Toolkit

By Unnati
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TOUCH AND FEEL

SEE AND ABSORB

Methods and Tools for Conducting Situation
Analysis and Capacity Assessment by Disabled Persons
Organisations (DPOs) in India
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Logo of UNNATI

Logo of Sightsavers

Presented by:

Unnati and Sightsavers

Produced by:

Unnati Organisation for Development Education
G 1/200 Azad Society, Ahmedabad 380015, Gujarat, INDIA
PH: 91 79 26746145/ 26733296

Email: sie@unnati.org

Project cycle: October 2012 – March 2014

Project Coordinator: Ms. .Deepa Sonpal

Support: Ms.Sandipa Nelson, Ms.Geeta Sharma and Mr.Venkatesh Prasad

Layout: Mr.Ramesh Patel

Illustrations: Mr.Ranjit Balmuchu

Accessible D Format: Saksham Trust, New Delhi

Advisory Committee: Mr Binoy Acharya (Director, Unnati), Prof Neharika Vohra (Professor, IIM-A), Dr Yogesh Kumar (Director, Samarthan), Prof T V Rao (Adjunct Professor, IIM-A), Dr Rajesh Tandon (President, PRIA), Dr Kaustuv Bandhyopadhya (Director, PRIA) and Dr Harish Vashistha (Independent Senior OD Consultant).

Partner NGOs/ DPOs

1. Action on Disability and Development (ADD ) and Anna Theresa Disabled Development Trust (ATDDT): Mr. Sashi Kumar, Mr. Subramani Muralidhara, Mr. N V Ranganatha, Ms. Bhuvneshwari and Mr. Venkatesh Balakrishna

2. Disability Advocacy Group (DAG), Gujarat: Ms. Kinneri Desai, Mr. Parag Panchal and Ms. Neeta Panchal

3 . National Association of the Blind (NAB), Sabarkantha district branch: Ms. Vishlesha Jani, Ms. Praveena Mehta and
Dr. Bhaskar Mehta

4 . Rashtriaya Viklang Manch (RVM) , Rajasthan and Madhya Pradesh state branches: Mr.Sonu Golkar, Ms.Rajesh Nimole,
Mr.Om Prakash Sharma, and Dr Victor John Cordeiro

5. Sama Foundation and KARO : Mr. Devaraju Rangaswami, Ms. Sudharani Annayappa, Mr. Paul Ramanathan and Ms. Prascila Christopher

6. Sanchar A.R.O.D and Disability Rights Group (DRG) : Mr. Sujeet Karmakar, Ms. Asmita Banerjee and Ms. Tulika Das

7. S PARC India and Utt ar Pradesh Viklang Manch (UPVM) : Mr. Suraj Yadav, Ms. Shraddha Singh and Mr. Amitabh Mehrotra

Guidance and support from Sightsavers:

Mr. Cyrille Evini and Ms. Susan Pieri

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Disclaimer

This toolkit has been developed based on the assumption that organisational development (OD) or institutional building processes have largely remained the domain of experts and professionals. As a result, the existing tools on OD or institutional development have not been demystified and made accessible, limiting the participation of persons with different kinds of disabilities, i.e. persons with visual impairment (totally blind and low vision), persons with hearing impairment and other disabilities to take charge of conducting their own situational analysis and capacity assessment and advocate for their rights. This toolkit aims to offer a preliminary set of tools adapted from the existing set of tools available in the literature. The set of accessible tools has evolved through field-based interventions conducted through three trainings each at eight locations in India. The case studies developed by groups/ DPOs/ NGOs have been drawn up based on real-life examples and have no intent to hurt the sentiments of any particular group/s or communities. There may be many more tools that could be similarly used to conduct situation analysis and capacity assessment of DPOs in the regional context. The experiences from other regions and other tools could be added to this toolkit to offer a wider range. A continuous use of such tools over a period of time will enable an organisation to critically asses and modify the existing tools in the context of disability and perhaps a new set of tools may evolve through practice.

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FOREWORD

Organisational Diagnosis and Change was something that I heard for the first time about fifteen years ago when I ventured from Psychology to Organisational Behaviour. As part of my training in psychology I had learnt that diagnosis was a very important aspect of the process of helping someone wanting to work with self or receive help in improving mental health. The Diagnostic and Statistical Manual of Mental Disorders (DSM) defines and details how to diagnose mental disorders. The DSM goes through frequent revisions and to be able to use it one has to have relevant educational background, extensive training, supervision, and continuous learning. The mindset around diagnosis was that of following a manual, avoid any errors, and reduce subjectivity.

As I moved from psychology to organisational behaviour in my field of teaching, research and practice, I realised that there was a whole area of study and practice around Organisational Diagnosis and making interventions. I dived into the area and read accounts of practitioners and met them. I was always in awe of them and wanted to find out what was their background and training. I was immediately able to see that making an organisational diagnosis was more complex than individual diagnosis. The impact of it was very wide and deep and thus there was heightened need to make the correct diagnosis. However, there was a sense of disbelief on my part that there was no equivalent manual (to DSM), no specific method, and no specific training, and no internship required to undertake such diagnosis. It took me a while to understand the wisdom of multiplicity of method and delink myself from the positivist mindset I had imbibed from my training in psychology. As I worked and trained in the area I could see that if someone with perspective, experience of working in organisations, and wisdom was engaged in the process they derived meaningful insights and were able to sharply diagnose and intervene.

When Deepa Sonpal and Geeta Sharma from Unnati approached me to help with developing a module for training persons with disabilities running Disabled People Organisations (DPOs) in organisational diagnosis and change I was a bit taken aback. I was aware that most of the people who were going to be trained and run diagnosis had no real experience or training in this process. I had already been through one transition and here was a new one, I was being asked to partner with. However, the process was immediately started with exploring methods, meeting experts in the field, thinking deeply of application, ways and means of training, documentation. The team at Unnati worked tirelessly on the development of the Toolkit. The outcome of the work is in your hands.

I must say that I have read through some of it, browsed through other parts, attended the meetings where members of the DPO’s shared their experience of using the methods detailed in this Toolkit and I feel confident that this is very well conceived and

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executed document. In the times to come it will not only be useful for DPOs it will also be useful for people wanting to engage in organisational diagnosis and change in other sectors. It will also be a good document for students of organisational diagnosis. I am happy to have been taken through one more transition in my mindset of who can do and what is the best way to do organisational change and diagnosis. The Toolkit is detailed; it provides useful information, and give ideas to use methods and tools of diagnosis in various organisations. The illustrations are of very high quality and it will make it easy for the reader/user to use them or find ways of modifying to suit their context. The detailed methodology followed in some of the workshops will provide standardisation for users in diverse context.

The Toolkit marks an important milestone for practitioners and students in the area of organisational diagnosis and change and wish and hope many will use it in ways they deem fit.

Ms. Neharika Vohra

Professor, Organisational Behaviour

Indian Institute of management (IM), Ahmedabad, India

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FOREWORD

This project carried out by Unnati is an excellent example of creating something innovative that can be scaled up in a cost-effective and efficient manner. The toolkit developed as part of this endeavour is a much-needed tool in the area of disability empowerment. It will ensure that the development of disabled persons organisations (DPO) will not only be in a professional manner, but also they will be aware of their shortcomings and strengths. This would certainly guide them to work towards their empowerment in a time-bound and effective manner.

The efforts undertaken with 8 different kinds of partners, across India is a testimony to the hard work put in by the staff of Unnati and the eventual product developed by them as it fills an important gap in the Indian disability movement. This innovation will surely go a long way in the annals of disability empowerment as the concept of DPO is relatively new in India and hardly any national level umbrella organisation of all disabled exists.

Nevertheless, it needs to be pointed out that this is a mere beginning in the long journey of empowerment and self-advocacy. There are very few tested tools available that could be used by the DPOs for their development and even those that were available were certainly not accessible for all types of disabilities; but the contribution of Unnati and their partners need special commendation since they have tried tirelessly to meet accessibility requirements to include all types of disabilities.

Sightsavers is proud to have been associated with this unique endeavour and we hope that this will be a mere starting point for the nascent self-advocacy disability movement in India and that more and more disabled people will be empowered and encouraged to organise themselves for the promotion and protection of their rights.

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The lessons learnt during the 18 months, process of developing the toolkit have put forth several challenges that need to be met squarely. This point to various socio-economic difficulties that is unique to countries like India and those that need to be tackled with some solutions so that future generations do not have to work on the same failures. Overall, this is a great first step.

Another vital contribution of this kit is the fact that different phases/ approaches / models of disability models have been explained in very simple but pragmatic examples. The comparative merits of all the approaches and models have been discussed in a manner that is both lucid and at the same time comprehensive.

We hope that Unnati will make adequate efforts to take this movement forward and continue to provide guidance to newly forming DPOs.

Mr.Ketan Kothari,

Manager, Advocacy

Sightsavers India

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PREFACE

Unnati has a long history of providing educational support to build the capacity of people institutions promoted by disadvantaged sections of society, so that they are able to voice their needs and articulate their requirements. From 1990 to 1999, Unnati provided active support to groups working for their rights and entitlements. Organisational development or promoting institutional building is, however, not being undertaken actively now. The changing scenario prompted us to diversify and work on issues of social inclusion of dalits, mainstreaming gender, and promoting rural and urban governance from 1993. Since 2000 onwards it has made a strategic shift, and begun to focus more on promoting thematic educational interventions, expanding to include mainstreaming disability and disaster risk reduction. The institution building processes are now limited to responding to demands for specific organisations.

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) calls upon all governments and agencies working on disability to make a paradigm shift from viewing disability as a curse or a disease to a rights-based mode. Disability is now considered a result of barriers in the environment – social, cultural, eco-political and physical. With our experience on disability and institution building, we were very well placed to integrate our competencies and initiate the process of developing a set of accessible tools to be used by DPOs for their empowerment. With the timely support received from Sightsavers, we are happy to put together a set of accessible tools on situation analysis and capacity assessment developed in partnership with 8 DPOs/ NGOs in India. We hope that the use of these tools will inspire other DPOs globally and add their experiences to the growing body of knowledge on disability that will ultimately lead to empowering persons with disabilities and their representative organisations for inclusion.

We would like to acknowledge the contribution of Ms Vishlesha Jani, an executive member of the National Association of the Blind, Sabarkantha district branch, for her active participation. She passed away suddenly due to heart attack and her active contribution will be a loss not only for NAB but for the disability sector. She was a woman with visual impairment and will remain a role model to many women with disabilities.

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The final credit goes to our partners and all the persons with disabilities who participated in the field-level workshops/ trainings for cooperating ceaselessly and diligently undertaking the activities with attention to making the tools accessible.

We also appreciate the role played by the advisory committee members, in particular the organisational development experts, for patiently listening to our queries and guiding the process with great interest.

I would also like to thank the project team, the entire team of Unnati and particularly Mr. Binoy Acharya for taking great interest in guiding and supporting the process.

Ms. Deepa Sonpal

Programme Coordinator

Unnati, 2014

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1. THE INITIATIVE AND PROCESS

1.1 The Relevance of the Initiative

Situation analysis (SA) and capacity assessment (CA) are integral to the Human and Institutional Development (HID) processes. To truly develop an effective institution which is owned by all the primary stakeholders, including communities it works with, it must involve all the members of the community in organisational strategic planning and development. As many of the tools used for situation analysis and for capacity assessment are expert-led and do not provide opportunities for communities to participate, there is a need for developing SA frameworks and tools for direct involvement of communities in such processes.

A large number of participatory methods and tools have been developed to encourage the participation of communities in HID/OD processes. Experience suggests that the participatory methods are insufficient in ensuring effective and decisive participation of persons with disabilities. This is because (i) participatory methods, such as job card analysis, problem tree and resource mapping are based on visual presentation (ii) in participatory methods the embedded power structures work to reinforce hierarchies and persons with disabilities, especially persons with visual impairment, hearing impaired, women with disabilities and those with developmental disabilities, are forced to stay away or keep silent. Often, other persons in the community, family or neighbours and relatives speak on behalf of persons with disabilities instead of making an effort to elicit their views or decisions. As a result, the analysis and interests of persons with disabilities is not included in the HID/OD processes of situation analysis. Thus, there is an urgent need for adaptation of the existing knowledge into methods, tools and techniques in the field to ensure that persons with disabilities can participate effectively.

There are many capacity - building institutions and consultants in India like IRMA, PRIA, HRD Academy, CYSD, ASK which have developed training manuals and pedagogy on HID/OD. Internationally a lot of literature is also available on this. However, none of these organisations have designed their programmes targeting persons with disabilities, particularly persons with visual impairment and other disabilities. To the best of our knowledge, there are no specialist organisations working on building capacities of Blind Persons Organisations /Disabled Persons Organisations in India using a pedagogy (framework that can address questions of disability and methods that are universally accessible), which are also led by persons with disabilities.

The United Nations Convention on Rights of Persons with Disabilities (CRPD) and the proposed Rights of Persons with Disabilities Bill in India have opened new doors for the promotion of development which is led by persons with disabilities. Thus, there is an

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urgent need for building the institutional capacities of BPOs/ DPOs to strategically plan their HID. At the same time, accessible tools need to be created beginning with involving persons with all types of disabilities

Currently, most of the organisations working on disability in India are rehabilitation and welfare-based institutions. There is an urgent need to make a paradigm shift in institutional development processes that is led and managed by persons with disabilities particularly persons with visual impairment and other disabilities. This requires development of Organisational Development and Programme Planning facilitators from among persons with disabilities with appropriate knowledge and skill sets. Besides facilitating the participation of persons with visual impairments and other disabilities within development processes, there is a need to develop a process that is owned by them. This calls for an engagement by persons with visual impairment and other disabilities in an action-research mode at their respective institutional levels. This provides scope for creation of processes, developing inclusive tools of assessment and meaningful participation.

An 18 - month action research project entitled Towards Developing a BPO/DPO - led Pedagogy to Facilitate the Process of Social Change was initiated during October 2012 – March 2014. The project has envisaged wider outcomes that have wider applications, since the project involves developing a knowledge product developed, owned and used by persons with physical disabilities, particularly persons with visual impairment. The process was conceived, developed and led by a project coordinator who has low vision and emphasis has been placed in building the capabilities of persons with disabilities, particularly persons with visual impairment and other disabilities, that may play a lead role to promote socially inclusive development programming in their own and others organisations.  

The goal, purpose and outcomes of this initiative were as follows:

Goal:

Inclusive pedagogy (tools and techniques) for organisational development (OD) is developed that can be effectively facilitated by persons with visual impairment and other persons with disabilities for formulating inclusive development programmes.

Purpose:

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Persons with visual impairment and other persons with disabilities take a leadership role in situational analysis and capacity assessment leading to a paradigm shift in knowledge development processes in the area of organisational development.

Outcome :

1. Existing situational analysis frameworks are analysed from a disability perspective through a multi-stakeholder consultative process.

2. Inclusive situational analysis framework and tools are developed by the active engagement of leaders and professionals, mainly including persons with visual impairment and other persons with disabilities in an action research mode.

3. A pool of 25 trained facilitators, including 16 persons with visual impairment and persons with other disabilities are developed as facilitators for inclusive situational analysis.

4. Inclusive situational analysis tools are disseminated for wider use.

1.2 Identifying Partners and Working out Formal Relationships

The project has worked with 8 BPO/DPO/ NGO partners who have been involved in co-developing, field testing and finalising the resource kit. Some of the prospective partners were consulted at the proposal making stage itself through prior associations and relationships from across the country and the other partners were taken on board later. The willingness of the DPOs to participate was a primary consideration as the process was more focused on learning and specific adaptations of the tools identified.

Once the project was approved and the formal contract was signed with Sightsavers, an introductory note was sent to the groups who had agreed to participate in this process followed by personal visits. The purpose of the visits made to the partners was to clarify the roles and responsibilities and the processes to be followed. We also met the heads/ leaders of the organisations and some of the staff that were deputed in this process. A face-to-face interaction also helped to build greater rapport, and clarifications were sought more comfortably. We also built a greater understanding of DPOs and found that largely they are membership based and involvement of members in activities is on a voluntary basis. Hence, the membership is floating depending on the availability of time with particular individuals, and issues taken up by the DPO in a particular phase. Most of the members are engaged

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professionally elsewhere for their living. In cross-disability organisations we were only able to find 20-30% representation of persons with visual impairment. Representation of persons with hearing impairment is very less.

Preliminary meetings with partners – SANCHAR and SPARC

Preliminary meetings with partners – SANCHAR and SPARC

Visits were made to all the 8 partners to discuss the initiative in detail during November – December 2012.

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The partners in the process were:

After the heads of the institutions participated in the Inception Workshop and the nominated participants attended the Training of Trainers a formal contract was worked out with each for implementing field - based trainings elaborated in the following sections.

1.3 Literature Review Preparation of Compendium and

We collected literature on organisational development (OD) and particularly related to Situation Analysis and Capacity Assessment by contacting several OD experts globally as well as nationally. A 156 - page compendium of existing tools on Situation Analysis

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and Capacity Assessment was prepared to be used as resource material for the select participants from each DPO at the Training of Trainers (ToT) programme.

Cover page of the compendium

Dialogue and discussions were also held on various tools used in OD with several experts through personal visits and discussions over email. They were:

Prof Neharika Vohra, Indian Institute of Management (IIM), Ahmedabad

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Prof T V Rao, Adjunct Professor, IIM, Ahmedabad

Dr Rajesh Tandon from PRIA, New Delhi

Dr Kaustuv Kanti Bandhyopadhya PRIA, New Delhi

Dr Nivedita Kothiyal, Institute of Rural Management, Anand (IRMA)

Dr Yogesh Kumar from Samarthan – Centre for Development, Bhopal

Fr. Jimmy Dabhi, Behavioural Science Centre (HDRC), Ahmedabad

Mr Stephens, SEARCH, Bangalore

1.4 Inception Workshop with Partners and OD Experts

An Inception Workshop on Developing Accessible Tools on Situation Analysis (SA) and Capacity Assessment (CA) by Disabled Persons Organisations was organised at Ahmedabad, during February 14-15, 2013. The objective of this workshop was to develop a common understanding on the relevance and application of identified frameworks, tools and techniques on SA and CA and discuss the means to adapt them to enhance the participation of persons with visual impairment and other disabilities to conduct their own situation analysis and self-capacity assessment of their DPO. Presentations were made on the identified tools, and discussions were held on their adaptability with advice by OD experts who were present. Based on this feedback, the final learning material for the participants of the ToT was prepared as a compendium. On the suggestions by partners this material was translated also into two vernacular languages for the convenience of the participants (Hindi and Gujarati).

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Group photo of the Inception Workshop

In this workshop, the identified tools on SA and CA were shared and discussions were held on how these could be made accessible and be suitably adapted. The workshop also focused on discussing the modalities of operation. One resolution from the workshop was that it is not absolutely required that new tools be developed, but as a result of this process the existing tools would be modified to enhance active participation of persons with disabilities, particularly persons with visual impairment. The process should be conducted in such a way that the examples of SA and OD conducted by DPOs and BPOs from the disability sector would be articulated and clearly documented and made available in the form of a toolkit with steps and facilitation tips. This would be uploaded on the organisation’s website and be made available as Open Access globally. Moreover while attempting to make adaptations at the field level beginning from the ToT and then through the trainings conducted by the partners from June 2013 onwards, the steps and methodology for enhancing the participation of persons with visual impairment and other disabilities would be captured, documented and included in the final toolkit.

The other major learning was that there are no examples in the OD literature on disability. This initiative is therefore pioneering this and would be able to generate such examples. Secondly, the main aim of this initiative is to enhance the participation of persons with different kinds of disabilities and build effective DPOs, Hence, instead of organisational development, perhaps it would be

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more appropriate to say the that this process is about Institution Building which is a much broader term. In this case it is about Building Effective DPOs.

The definition of a DPO or SHG of persons with disabilities was discussed at the Inception Workshop. Some groups felt that only a group comprising persons with disabilities could be considered as a DPO, while some others felt the parents for children below 18 years or for those with disabilities who are not able to speak for themselves need to be included. Some felt that if 70-80% of the members, including the Executive Council, comprise persons with disabilities, then other members could be non-disabled committed to disability due to various reasons. This could be as a parent or a relative or an academician who has studied or worked on disability.

An advisory group of eminent experts on Organisational Development was also formed to guide and provide inputs to this research. This team comprises Prof T V Rao (Adjunct professor), IIM-A; Prof Neharika Vohra, Professor, IIM-A, Dr Rajesh Tandon and Dr Kaustuv Bandyopadhyay, PRIA, New Delhi; Dr Yogesh Kumar, Samarthan Centre for Development Support, Bhopal; Dr Harish Vashistha, Senior OD Consultant and Mr Binoy Acharya, Director, Unnati.

1.5 Training of Trainers (ToT) for Capacity Building of Partners

Training of Trainers (ToT) on Developing Accessible Tools on Situation Analysis and Capacity Assessment by Disabled Persons Organisations (DPOs) was organised during April 1-4, 2013, at Bengaluru for the participants deputed by the respective organisations. A detailed training design was prepared in consultation with senior OD consultants who are part of the advisory for this initiative and some of them were present for the ToT and also conducted some of the sessions. The objectives of the ToT were to:

Group photo of the participants at the ToT

Each organisation/ DPO had deputed two participants for the ToT and the resource persons for the programme were Mr Venkatesh Balakrishna, Founder Director, ADD India; Dr Victor John Corderio, World Blind Union; Prof Neharika Vohra, IIMA; Dr Yogesh Kumar and Mr Venkatesh Prasad, Samarthan, Dr Harish Vashistha, Senior OD Consultant; Mr Binoy Acharya, Director Unnati and the project team: Ms Deepa Sonpal, Ms Sandipa Nelson and Ms Geeta Sharma from Unnati.

During the ToT the focus was not only to simplify the tools but also orient the participants to the various usable tools on SA discussed and finalised at the Inception Workshop in February 2013, and could be used at the field level to enhance the participation of persons with visual impairment.

The participating organisations were expected to go back and conduct three training programmes at the field level with the core committee members of their organisations in the local language and extensively document the process:

i. Perspective building and situation analysis (SA)

ii. Building effective institutions and DPOs

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iii. Self-capacity assessment (CA) of their respective DPO


The above activities were conducted by the participants of the ToT with facilitation support from OD experts within a span of six months by each DPO.

In the ToT there were in all 17 participants from the DPOs/NGOs (6 persons with visual impairment, 1 with low vision, 1 with cerebral palsy, 5 with locomotor disability and 4 non-disabled) along with other resource persons and OD experts.

Material was provided to the participants in accessible formats: in Braille, tactile diagrams, text files in Word convertible through a text to speech synthetic speech software, and techniques like reading aloud all that was written on charts were followed. Most of the material was also provided in 2 vernacular languages – Hindi and Gujarati. The OD facilitators tried to observe and learn how persons with various disabilities learnt and participated in the process.

1.6 Facilitation Support for Three Trainings at the Field Level

After the ToT each BPO/DPO was assigned a mentor to guide, provide hand-holding support and to conduct three trainings/ workshops at the field level as follows:

All the 8 partners conducted three trainings each on:

The first part of the training on perspective building and situation analysis covered the approaches and models on disability viz. charity, medical, social and rights-based model/ approach for building the perspective of the participants and emphasising the differences between the approaches. It was discussed how persons with disabilities are viewed under each of these and the need for using a combination of these while making field based interventions. Each partner was supported to prepare 4 case studies on the approaches and some partners also developed skits. The scripts of some samples are translated into English and included in the toolkit. In all, 7 sets of cases were prepared.

Group photo of one of the 1st trainings at Sanchar

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Preparatory meeting with one of the partners (NAB) for the trainings

In the second part, emphasis was laid on situation analysis, on how society views/ why it excludes or denies participation of persons with disabilities in the development process. This was conducted by analysing the cause and effects of social exclusion of persons with disabilities by using the metaphor of a tree (Problem Tree Analysis). Case studies were prepared from life experience of persons with disabilities in India in consultation with the respective groups. The case studies focused on multiplicity of problems like poverty, discrimination on grounds of gender and disability, low awareness among persons with disabilities about their rights and in society about disability, limited access to basic services like health, education, access to schemes, justice, information in accessible formats and barrier-free environment. In all, 5 case studies were prepared. It was emphasised to the participants that it

was important to work on the root causes as they are structural in nature to promote inclusion instead of the effects in order to make a long-term impact. The examples developed during these trainings along with the case studies are included in the toolkit.

After analysing the causes and its effects the participants were enabled to select one cause and formulate an objective converting the causes or negative state into positive doable/ achievable statements. Taking one objective as a sample, Stakeholder Analysis was conducted to make a list of stakeholders, and in some cases, if time permitted, analyse the level of influence and control/ power the particular stakeholder had for achieving the objective identified on a three - point scale (high, medium, low). A long list of

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stakeholders, about 50-60, were identified from village to district to state to national level, to enable the participants understand the varied levels at which interventions are required. From a list of 50-60 stakeholders identified, some were selected to work out strategies of engagement/ participation. The idea was to explain to the participants that such an in-depth analysis is required with adequate planning for an intervention to be made effective.

Group photo of one of the 2nd trainings

ii. Building E ffective Institutions/ DPOs

In this workshop the participants were oriented to the elements of an organisation: vision/ mission, structure, strategy, human resources, programmes/ activities, culture and leadership. From these it was emphasised that the vision/ mission of an organisation, based on the socio-political, economic context, are the most vital elements as they define the purpose or genesis for the formation of an organisation. The difference between vision and mission was explained through a case study developed specifically for this group. Some organisations even developed a skit and the script of this has been translated into English and included in the toolkit. The groups were then facilitated to make a tentative vision/ mission of their own DPO, keeping in view the

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causes of social exclusion identified in the first training. After the workshop they were asked to share these processes with other members of the group at the grass roots and with the wider committee members before finalising them. Some examples have been generated and are included in the toolkit.

Group photo of one of the 3rd training at KARO, Bangalore

ii i . Capacity Assessment

The third workshop/ training focused on enabling the DPOs to assess their capacity in the context of the current reality/ environment/ challenges. The analysis derived from the first workshop on situation analysis and social exclusion of persons with disabilities was referred to as a base as well as the vision/ mission defined in the 2nd workshop/ training that defines the purpose of the DPO. For assessing the organisational capacity of the DPO, eminent OD specialist, Marvin Weisboard’s Six-Box Model was used to assess the relevance, gaps and what needs to be done for improving the DPO under the following heads: 1. Purpose 2. Structure 3. Relationships 4. Helpful Mechanisms 5. Rewards and 6. Leader. If time permitted, another tool, SWOT (Strengths,

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Weaknesses, Opportunities and Threats) Analysis, was also demonstrated with how to cull out some strategic directions. For assessing the individual capacities required, Job Analysis of the various office bearers as per the prevailing structure was done and the groups were asked to use the profile generated and then evaluate the performance of existing office bearers, and accordingly take decisions for giving rewards and electing new office bearers. It was felt that such analysis would enhance the efficiency and effectiveness of the DPO.

Prior to the workshops each DPO worked in conjunction with the OD facilitator to develop a detailed training design with session plans to facilitate each workshop. This process included preparing relevant case studies and learning material to be given to the participants in accessible formats. While conducting the workshops/ trainings, emphasis was laid on facilitating the participation of persons with visual impairment, low vision, hearing and speech impaired persons, persons with cerebral palsy and other disabilities. This process followed was extensively documented and facilitation support was extended whenever required. These are included in the toolkit in the process to be followed and in facilitator’s notes. It also contains the various examples generated during the process as future reference. All three workshops/ trainings were intellectually stimulating and exhausting too as most participants had never applied an analytical approach to their own lives and then transcending it to the DPO. The OD facilitators deputed to each group attended all the trainings carried out by the DPOs and supported the facilitation and documentation process.

All the 8 partners completed 3 trainings each. In all there was a total of 160 participants with 104 men and 56 women (24 persons with visual impairment, 6 with low vision, 14 persons with hearing impairment, 6 persons with cerebral palsy, 84 with locomotor disabilities, 14 with other disabilities and 12 non-disabled). This is excluding the facilitators and OD consultants

Extensive feedback was given on the modules prepared by the ToT participants/ facilitators and support was also extended to develop locally relevant material/ case studies, skits, in the local language. In places where the participants found it difficult to articulate the steps to be followed while conducting an exercise, the modules developed by some DPOs that were in order were shared for greater clarity and adaptation.

1.7 Lessons Learnt Workshop

A two day lessons learnt workshop was conducted on March 11-12, 2014 in which the groups shared the challenges faced, the lessons learnt and the emerging direction to be taken by the DPOs in their respective areas. It was acknowledged that the Toolkit was comprehensive and unique as it had clear steps for conducting the activities along with the facilitator’s note to guide the trainer. It has covered how the tools could be used with persons with visual impairment, hearing impairment and other disabilities. These need to be used again and again over a period of time in order to standardise the techniques and add experiences from across the globe. Several cases and examples from the disability field have been generated that would add values to the field of literature on organisational development.

Photo of Lessons Learnt Workshop

Group photo of Lesson's Learnt Workshop

The challenges articulated relate mainly to the nature of voluntary involvement of persons with disabilities who not only face social barriers for inclusion but also physical barriers that restrict their mobility. As the level of education and employment among persons with disabilities is very low, sustainable strategies need to be worked out for the survival and growth of DPOs to act as pressure groups for self advocacy and undertake activities that would combat social exclusion and enable persons with disabilities to lead a dignified life in society.

1.8 Monitoring Mechanism

A Programme Management Committee (PMC) comprising the heads of the organisation, the project team and OD experts in the form of an advisory committee was constituted to monitor and determine the direction of the progress made in the project. Two PMC meetings were held and all decisions regarding the nature of support to be extended and the plan of action in the next phase were taken at these meetings. The 1st PMC was held with the Inception Workshop and the 2nd one was held with the ToT conducted for the participants.

The 3rd round of PMC meeting was conducted informally through mail and meeting in person. The fourth PMC was held together with the Lessons Learnt workshop in March 2014, the end of the project period. The challenges faced and lessons learnt have been consolidated in a separate chapter.

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2. HOW TO USE THE TOOLKIT

This Toolkit has been developed based on centrality of participation of persons with disabilities with an aim to not only empower but also emancipate them from the current situation. The Tools used in the kit, the processes and facilitation notes have been elaborated so that the participation of different types of persons with disabilities could be enhanced. The tools aim to create an educational process wherein persons with disabilities have access and control over the process and its outcomes.

This Toolkit has the initial sections on Foreword, Preface, Contents, About the Initiative and Process and How to Use this Toolkit.

The main body of the Toolkit has been divided into three thematic parts. These are:

Training for Perspective Building and Situation Analysis

Training for Building Effective Institutions/ DPOs

Training for Capacity Assessment by DPOs


Each part contains the following:

How to use toolkit image- Suggested workshop

How to use toolkit image - approaches to disability

How to use toolkit image - session plan

How to use toolkit image - case studies

3. TRAINING FOR PERSPECTIVE BUILDING AND SITUATION ANALYSIS

This phase on ‘Perspective Building and Situation Analysis’ aims to first develop the perspective of the members of the disabled persons organisations (DPOs) on the current situation of persons with disabilities and the various approaches / models adopted for including/ mainstreaming persons with disabilities. The approaches / models on disability have been classified under four categories: Charity, Medical, Social and Rights Based. It is important to first build the perspective of the participants and then clarify their concept of functioning. Ideally, a people’s institution like a disabled persons organisation (DPO) is expected to work on a rights - based approach in combination with the social model that speaks about engaging the participation of all stakeholders.

As stated by the Convention on the Rights of Persons with Disabilities (UNCRPD), disability is a result of impairment and its interaction with the barriers in the environment. But most DPOs in India are essentially engaged in accessing benefits of social security schemes for persons with disabilities. In terms of advocacy they are mainly engaged in staging demonstrations/ protests for obtaining entitlements. It is important to understand the relevance and true meaning of rights-based approach, and the power in the collective strength of user groups for advocacy and accessing justice and rights. A combination of approaches is required as donations/ funds are also necessary for the functioning of a DPO along with medical assessment, corrective surgeries and aids and appliances. Therefore, all the approaches are necessary while operating at the field level to be used with discretion by members of the DPO.

The second step is to identify the root causes of social exclusion of person with disabilities as they are structural in nature. Only if the root causes are addressed will it be possible to make significant changes in society. It is seen that most often the interventions / programmes developed to address the deprived sections of society like persons with disabilities tend to address the effects or what may seem most apparent and evident at the surface. This holds the possibility of bringing about cosmetic changes and can be considered as symptomatic treatment. In the third step, it is important to make attempts to change the causes of social exclusion into achievable objectives. The fourth step is to make a list of stakeholders against each objective and assess the level of influence and importance / control/ power they may have for fulfilling the objectives: Based on this analysis, strategies of engaging their participation for fulfilling the stated objectives can be worked out. However, there may be several overlaps in this process and a couple of objectives may be achieved by allying with some stakeholders.

3.1 Workshop Design (suggested)

APROACHES TO DISABILITY

Time: 3 hours

Method: Case analysis or presentation of skits

Material s : Flipcharts/ whiteboard, markers, handouts 1 of cases [one each on charity, medical, social and rights - based models/approaches in Braille, large print, pictures depicting the story and Reading 1 on Understanding Disability.

Objective:

PROBLEM ANALYSIS OF SOCIAL EXCLUSION

Time: 6 hours

Method: Group discussion and enactment of skit based on cases and touch and feel method

Materials: Flipchart, markers, white tape, prints of cases in handouts 2 and in accessible formats, regular print, large print, Braille and picture story board, case study recorded in the form of talk theatre in the local language. Reading 2 on Exploring the Cause- Effect Relationship of Social Exclusion.

Objective:

ENGAGING STAKEHOLDER PARTICIPATION

Session I: Converting C auses of S ocial E xclusion into A chievable O bjective

Time: 1 hour

Method: Large group discussion

Materials: Flipcharts / whiteboard / blackboard, relevant pictures of some stakeholders, the cause-effect flow chart prepared in the previous session

Objective: The participants will be able to convert the problems or barriers to social inclusion based on their own experience into achievable objective/ outcomes.

Session II: Stakeholder Analysis

Time: 2 hours

Method: Small group and large group discussion

Materials: Flipcharts, whiteboard / blackboard / markers and Reading 3 on Engaging Stakeholder Analysis.

Objective s :

3. 2 Approaches to Disability

3.2.1 Understanding Disability (Reading)

The Census of India (2001) estimated that there are 2.13 per cent (21.91 million) persons with disabilities in India. The 58th Round of the National Sample Survey (NSS) reported in 2002 that there are approximately 2 per cent (18.5 million) persons with disabilities. A report by the World Bank (2007) ‘People with Disabilities in India: From Commitment to Outcomes’ estimated 4-9 per cent (40-90 million) persons with disabilities provided persons with mental illness and mental retardation were included in the definition of disability. The recently published and the first World Report on Disability (2011) estimates that about 15 per cent of the people live with some form of disability, of whom 2-4 per cent experience significant difficulties in functioning.

The limited availability of data and no clear estimation on disability reflect the low priority accorded to persons with disabilities. The variations and increase in the estimated global prevalence of disability may be attributed to the evolution in the definition of disability, improvements in the methodologies used to measure it, population ageing and the rise in non-communicable chronic diseases.

It has been widely recognised that persons with disabilities are the most marginalised and face exclusion due to barriers in the environment: social, cultural, attitudinal, and physical. This limits their participation in all spheres of life – social, cultural and political - and results in a denial of their rights. Among persons with disabilities, certain groups are more vulnerable on account of their disability type, age, gender, class, urban/rural and regional variations; persons with mental illness and mental retardation, persons with severe and multiple disabilities, children with disabilities, especially girls, the elderly and women with disabilities face greater exclusion on account of their special vulnerabilities.

The eradication of barriers is essential to facilitate human development to enable all persons to lead a dignified life and to ensure an equal access to opportunities.

The understanding of what constitutes disability has undergone a considerable change over the last 3-4 decades, and there is an increasing acceptance and recognition of disability as a development and human rights issue.

Globally, persons with disabilities account for more than 1 billion, of whom nearly 200 million experience considerable difficulties in functioning. Recent studies show that 85-90 per cent of persons with disabilities reside in developing countries. A majority of the persons with disabilities are not only poor but the poorest of the poor (Yeo, 2005). In India, due to a ‘stigma’, persons with disabilities are often secluded from public view; hence there are no correct estimates of the number of persons with disabilities.

I. Models and Approaches to Disability

Disability has for long been viewed as a specialised field and excluded from the mainstream development debates and practice. After the Independence in 1947, the Medical/Charity Model grew to address disability and informed policy decisions. Till date, the impressions of this model are deeply embedded in Indian society. The emphasis in this is on service provision and rehabilitation, the basic premise being to treat the ‘disease state’ or the ‘problem’ requiring medical intervention in the form of treatments, cure and rehabilitation. Persons with impairment are viewed as ‘abnormal’, as ‘patients’ and as dependent ‘objects’ requiring special medical help, care and at times segregation into special institutions or ‘asylum’ with the support of medical professionals to restore them back to ‘normal’ functioning.

The recent discourse on the Social Model considers disability as a social construct and a human rights issue. It is the interplay of social, cultural, economic, political and environmental factors that act as a ‘barrier’ to the impairment, requiring change. Disability is thus not only a pathological or health phenomenon but also about ‘discrimination’ and ‘exclusion’. This model, in any way, does not reject the requirement of the role played by rehabilitation intervention – efforts for minimising disability, cure, treatment, aids and appliances, access to basic social services (education, employment, transport) and a barrier-free built environment, but considers these as a basic right of all human beings.

Lately, the understanding on disability centres around the International Classification of Impairments, Disability and Handicaps (ICIDH-1 and ICIDH-2) and the International Classification of Functioning, Disability and Health (ICF-WHO, 2001) advocated by the World Health Organisation. This definition aims at integrating the medical and social model and is sometimes termed the bio-psycho-social model of disability (World Bank, 2007). This model begins with a health condition that gives rise to an impairment leading to activity limitation, consequently affecting the ability to participate due to barriers. Disability can be split into three components as are commonly used in applied disability research: (i) impairments like visual hearing, speech, mental and paralysis focus on the intrinsic limitations; (ii) functional limitations refer to difficulties experienced in undertaking personal activities with bodily functions like seeing, walking, speaking, lifting, irrespective of an impairment and; (iii) activity limitations are those that are experienced while carrying out activities of daily living such as bathing, dressing and participation limitations like going out to work, school, play or shopping. The first two, impairment and functional limitations, are consistent with the medical model and activity limitations relate to the social model.

The definition of disability adopted informs all policy matters and decisions influencing practice. The International Classification of Functioning, Disability and Health’ (ICF), the conceptual framework adopted by the World Report on Disability, 2011 combines elements of the medical and social models by emphasising the importance of the interaction between health conditions and contextual factors, both personal and environmental (bio-psycho-social model). Disability is the umbrella term for impairments, activity limitations and participation restrictions, referring to the negative aspects of the interaction between a person (with a health condition) and that person’s contextual factors (environmental and personal) (World Report on Disability, 2011).

The changes in the perspective and definition of disability have also resulted in a change in the nature of development interventions moving from medical and welfare-based interventions to mainstreaming persons with disabilities in all development processes aimed at inclusive development.

II. Legal Frameworks on Disability

The last 3-4 decades have witnessed various developments at the international level that have contributed to a change in the perspective of and approaches to disability and an emphasis on the inclusion of persons with disabilities in all development processes. . Some of the key developments are recounted here:

The first specific recognition and priority to persons with disabilities was accorded in 1981 when it was declared as the International Year of Disabled Persons. This led to a series of affirmative measures such as the adoption of the World Programme of Action Concerning Disabled Persons during the UN Decade of Disabled Persons (1983-1993). The World Programme of Action sought to promote effective measures for minimising disability, rehabilitation and realisation of equal opportunities for persons with disabilities.

This was followed by the drafting and adoption by the UN of the Standard Rules for Equalisation of Opportunities for Disabled Persons in 1993. These rules provided governments with guidelines on actions to be taken to promote equal opportunities for persons with disabilities for all aspects of human development, including education, economic and political.

In 2000, the Millennium Development Goals (MDGs), accepted by 189 countries as a set of quantifiable, time-bound goals required to achieve sustainable gains in human development by 2015, did not originally have any reference to disability. As a result of concerted efforts by civil society and Disability Rights Groups, the General Assembly at its 65th session adopted the resolution (A/RES/65/186), “Realization of MDGs for Persons with Disabilities for 2015 and Beyond”, an indication of the building momentum for mainstreaming disability in all aspects of development.

The Convention on the Rights of the Child, 1989 makes specific note of the rights of disabled children to education and training to achieve the greatest degree of self-reliance and social integration possible. The Jomtien World Declaration on Education for All, 1990 stresses education for all and recognises individual differences as a challenge and not as a problem.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD), 2006 is the first international treaty that has created space for a paradigm shift in the approach to and understanding of disability. The CRPD moves forward from a charity-based medical model perspective of rectifying/ curing the impairment to changing the social, attitudinal and physical environment that obstructs the full and equal participation of persons with disabilities in all aspects of development, including the decisions that affect their lives. It does not offer any definition of disability nor has it classified the types of disabilities; instead, it states that “disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others”. India is a signatory to the Convention and has ratified it in October 2007.

These developments have also prompted action by United Nations Economic and Social Commission for Asia and the Pacific (UNESCAP) at the Asia-Pacific regional level for promotion of the rights of persons with disabilities. In 2005, the Biwako Millennium Framework for Action towards an inclusive, barrier-free, rights-based society for persons with disabilities in Asia and the Pacific provided a mandate and guidelines for governments and other stakeholders for addressing the goals of the 2nd Asian and Pacific Decade of Disabled Persons (2003-2012). The Incheon Strategy, to “Make the Right Real” for Persons with Disabilities in Asia and the Pacific, has now been adopted to ensure a disability-inclusive post-2015 development agenda with a set of regionally agreed time-bound, measurable goals and targets to address the challenges, that have not thus far been addressed, in the new Asian and Pacific Decade of Persons with Disabilities (2013-22).

Since the late ‘80s, India has expressed its intent to promote the development and safeguarding of the rights of persons with disabilities by enacting four pieces of legislation, viz. the Mental Health Act, 1987; Rehabilitation Council of India Act, 1992; the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999; and the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995. Being a signatory to the CRPD, India is now attempting to bring its laws on disability in consonance with the understanding espoused by the CRPD for which a Draft Bill on Rights of Persons with Disabilities, 2012 has been prepared and is under consideration. A National Policy on Disability was prepared and launched in 2006, following which States are expected to formulate their respective policies on disability.

III. Status of Disability in India

i. Citizenship

Persons with disabilities experience profound exclusion and are isolated from community life on a daily basis. This is reflected in the low enumeration of the prevalence of persons with disabilities in the country at around 2 per cent while the recent WHO estimates it to be around 15 per cent, if a more comprehensive definition of disability is considered. The differences in enumeration of disability can be attributed to the reluctance of dominant forces in keeping ‘perpetuating’ the invisibility of persons with disabilities, as employing appropriate counting measures will provide the required information and knowledge base for further policy research.

This clearly indicates that persons with disabilities have not been viewed as a significant vote bank. This denial is clearly related to fulfilling the demands and needs of emerging groups, being also excluded from the socio-political discourse in the country. In a right’s mode of operation, it is persons with disabilities and their families, through Disabled People’s Organisations (DPO), that are best equipped to demand their civil, political and social rights. As there is no proper enumeration, the goal of universal suffrage remains incomplete. The names of many persons with disabilities do not even appear on the electoral list. Even if they do, the inability of exercising choice is hindered by inaccessibility to polling booths, with no transport facilities to reach these booths and lack of availability of information in accessible formats. Thus, persons with disabilities are disenfranchised from having a ‘voice’ in the selection, representation and influencing the political decision-making process in the country.

The scope and meaning of citizenship not only relates to rights and entitlements, but implicitly assumes certain duties and responsibilities to be fulfilled by the citizens by contributing to their own welfare and the welfare of others. The very denial of civil, political and social rights alienates the individuals from the role of a citizen and participating as an equal member of society. Thus, accounting the prevalence of disability in any society or, for that matter, of any oppressed group helps to ‘centre stage’ their contribution and informs and shapes the policy environment for investment in capacity building. This will not only enable their contribution but also reduce the development costs shared by care givers.

Factors such as physical inaccessibility to polling booths, limited transport facilities to reach them and lack of availability of information in accessible formats affect the exercise of choice by persons with disabilities during elections. Advocacy by a few groups of disabled persons has led to measures being taken by the government to provide ramps and information in Braille. These measures need to be taken from a holistic perspective as partial accessibility will have a limited effect on their ability to exercise their choice in the selection of candidates. A change in the mindset of people and ensuring through legal measures that persons with disabilities are not discriminated against are equally important factors for the full realisation of their citizenship and political rights.

Persons with disabilities also do not have the space for representation in and influence over the decision-making process in the political arena. Their access to decision-making forums, from the local to the national level, is extremely limited. There is provision for representation in panchayats and nagarpalikas for women and SC/ST but there is no such space for persons with disabilities to represent in the governance system. This restricts their ability to place their demands in such forums. The representation and voice of women and girls with disabilities are especially low and neglected in the political arena.

ii. Socio-cultural Attitudes and Beliefs

It is the culture of a community that influences the attitude, beliefs and values that society holds towards a particular section or category of people that determines the image portrayed about the particular section. The world over, generally, persons with disabilities are viewed negatively as individuals to be ridiculed, looked down upon and a burden on society as they are incapable of contributing productively.

The highly stratified and complex society in India puts persons with disabilities in the lowest rung of the ladder. The nation is predominantly influenced by Hindu religious philosophy; hence, the ‘Theory of Karma’ plays a vital role in perpetuating a derogatory and subordinate status, where disability is a misfortune due to bad deeds in previous births or the misdeeds of parents. At a profoundly serious and spiritual level, disability represents divine justice. This attribution to metaphysical factors has played a major role in developing a fatalistic attitude among persons with disabilities and their families and in compelling them to accept the conditions as ‘God’s will’ and to take a back seat.

This is reinforced by religious texts, as in the laws prescribed by Manu in the ancient religious scriptures and the local sayings and proverbs; often persons with disability are not called by their name but by their type of disability and in a derogatory manner. The media and, to a large extent, the Indian cinema have played a dominant role in reinforcing these beliefs. In the past two decades several films have attempted to project the needs of persons with disabilities to transgress the boundaries traditionally defined. Apart from experiencing restrictions on mobility due to an inaccessible physical environment, persons with disabilities experience ‘social restrictions’; due to the stigma, they are barred from attending occasions considered culturally auspicious like marriages. This is especially evident in cases of persons with intellectual disabilities and persons affected by HIV/AIDS. A negative attitude towards persons with disabilities also has an impact on the development interventions.

Although the family and the community are the primary agencies of oppression for persons with disabilities, they are also the source that can provide the support and encouragement required to overcome the barriers. In India, most families are of an extended nature and the culture of looking after the ill and the infirm prevails. This attitude can be harnessed to recognise the need for compassion and care at the same time for enabling persons with disabilities to contribute towards their own welfare/development. As emphasised by the social model, persons with disabilities, their families and the community need to be enabled to understand that disability, like gender and caste, is a social construct and a change in the mindset is essential. This will not only enable persons with disabilities to positively contribute to the development process but also cut the development costs entailed.

iii. Health Care

Poverty is found to be both a cause and consequence of disability worldwide; persons with disabilities account for one-fifth of the global poor. Extreme vulnerability and ill-health as a result of poor access to nutritional and health services results in disease, impairment and disability, leading to low productivity and low participation in economic, social and political development process. This setting - in of an ‘exclusionary’ process is a vicious cycle, not only exacerbating poverty but also furthering marginalisation and exclusion. Around 70 per cent of the causes of disabilities in India are a result of communicable diseases. The 360 million people who live below the poverty line are more susceptible to impairments as they are more likely to suffer malnutrition, living in crowded and unsanitary conditions, have limited access to medical care, consult traditional healers and are poorly educated. The Census further enumerates that 75 per cent of persons with disabilities live in rural areas, 49 per cent of this population are literate and only 34 per cent are employed. The male - female ratio of 58:42 reflects the gender disparity owing to a high prevalence of female infanticide, foeticide and a low preference given to girl child.

A large number of disabilities in India are preventable but a large number of children suffer from malnutrition. The National Family Health Survey-3 (NFHS-3) indicates that almost half of the children under age five are too short for their age, 20 per cent are too thin for their height and 43 per cent are underweight due to chronic malnutrition. Access to health care during pregnancy and early child care are poor as three out of every five births in India take place at home. In the three years preceding the NFHS-2, conducted by the Union Ministry of Health and Family Welfare, 35 per cent of pregnant women received no antenatal care. Full immunisation coverage declined from 59.2 to 48.5 per cent in 5 years. Access to delivery of health services remains an issue of concern due to reasons of awareness, attitude, physical access, communication and poverty.

The need for health services by persons with disabilities is much higher than that for the non-disabled and they also tend to incur much higher expenditure. The arena of mental health is greatly neglected, both in terms of policy and implementation, and there is very little data available on this issue. Despite a proliferation of health insurance agencies in the market, only five per cent of households report that they have any kind of insurance that covers at least one member of the household and persons with disabilities technically do not get coverage under most insurance schemes in the country.

Using NSSO sources, the World Bank has estimated that accidents comprise 18 per cent of disabilities where for men over 35 per cent of these injuries occur at the place of work and for women 60 per cent occur at home. The census further enumerates that 75 per cent of persons with disabilities live in rural areas, 49 per cent of this population is literate and only 34 per cent are employed. The male female ratio of 58:42 reflects the gender disparity owing to high prevalence of female infanticide, foeticide and low preference is given to girl child. The NSS data (58th round) indicates that among persons with disabilities, women are around 13 per cent less likely than men to seek treatment viz. assessment, diagnosis or rehabilitation. The need for health services by women with disabilities is much higher than that for women without disabilities and they also have to incur much higher costs due to inaccessibility in transport, health services and information and communication.

iv. Education

Educational status is a key human development indicator that is used to assess the status of a particular population. The educational attainment rates are much lower for persons with disabilities, with 52 per cent illiteracy against a 35 per cent (Census, 2001) average for the general population. The illiteracy rate is particularly high for children with multiple, visual and intellectual/mental disabilities. The share of out-of-school children with disabilities is five and a half times the general rate (World Bank, 2007). Among children with disabilities the attendance at school never rises above 70 per cent for boys and around 66 per cent for girls. (NSS, 2002). The report clearly identifies that this is due to several barriers of inter-agency/ inter - departmental co-ordination. The system of early identification of children is weak with discrepancies in data of identified children by the Sarva Shiksha Abhiyan and the Census. The physical accessibility from home to school is a barrier, especially in rural areas, as there may not be proper roads. Even if the children do manage to reach school, the premises are not barrier free with no accessible toilets and water points. The prevailing attitudes of the teachers as well as those of the parents and community members are particularly not encouraging towards inclusive education. Literacy rates among women with disabilities (32 per cent) are lower than for men (68 per cent). These rates are even lower in rural areas and for specific groups of disabilities (mental illness and retardation, multiple disabilities and speech and hearing).

v. Employment

The level of education is directly related to employment; with poor educational background there will in any case be limited opportunities for employment. The World Bank report has clearly stated that a large number of persons with disabilities are capable of productive employment with the support of aids and appliances. The employment rate is 60 per cent lower, on an average, than the general non-disabled population. Contrarily, there was a decline in the employment rate from 42.7 per cent in 1991 to 37 per cent in 2002 (NSSO 58th round) as the employment status of persons with mental illness and mental retardation had not been covered. The general prevailing attitude in society is that people with disabilities are unproductive; hence they are compelled to stay at home and are not exposed to employment opportunities. In fact, often, it has been found that one member of the household stays back at home to take care of the ‘sick’. This adds to the double burden cost of disability.

Despite a three per cent reservation on all public employments, only certain stereotyped jobs have been identified as suitable for employment, leaving only 0.44 per cent of posts filled (World Bank, 2007). Employment reservation in the government sector is applicable for only three types of disabilities – locomotor, hearing and visual impairments. For the private sector, there is no quota system that is followed, but the PWD Act 1995 provides space for an incentive policy. The National Centre for the Promotion of Employment of Persons with Disabilities (NCPEDP) conducted a survey of ‘top 100 multinational companies’ in the country in 1999 and found that the rate of employment of persons with disabilities in the private sector was a mere 0.28 per cent, 0.05 per cent in multinational companies, and only 0.58 per cent in the top 10 IT companies in the country.

There are some examples of companies showing a better performance where persons with disabilities have been employed. The link between the national network and special employment exchange and private establishments is poor as a result of which the job placement ratio is low. The National Handicapped Finance and Development Corporation (NHFDC) was established in 1997 but till 2005 it managed to support less than 20,000 persons (World Bank, 2007). The limiting factors were low awareness and a wide gap in the loan disbursement procedure. The Vocational Training Centre offers stereotype options and no effort is made to update the skills in view of the changing demands. NGOs are entering the arena of imparting vocational training with no accreditation process being followed.

Amartya Sen, in his argument for fairness and justice for persons with disabilities, emphasises the two types of handicap related to disability. One is the ‘earning handicap’ as a person with a disability may find it harder to get employment and may also receive a lower compensation. They may also be engaged in an employment not suited to or much below their level of skill and qualification. The other is the ‘conversion handicap’ i.e. to live in the same way or do the same things as the non-disabled; persons with a disability may need more income – the disadvantage of converting money into a good living – like buying essential support services.

vi. Access to Justice

Rights of persons with disabilities do not find explicit mention in all laws pertaining to human rights. Experience has indicated that unless specifically mentioned, their rights are often overlooked by administrators of justice. Persons with disabilities are not consulted fully and concertedly in the development of legislations, amendments, and formulation of rules and policies. Their representation, if at all, is negligible and not inclusive of persons with all types of disabilities.

The Persons with Disabilities Act, 1995 provides for a Commissioner in every State to safeguard the rights and facilities made available to persons with disabilities, receive and address complaints of denial of their rights and non-compliance with the legal provisions, by-laws, regulations, etc. made for their protection. This mechanism, an affirmative measure, has not received adequate publicity (especially in accessible and user - friendly formats in vernacular language) or been effectively decentralised for its optimal utilisation. Often, the Commissioner is appointed without the requisite background and understanding of disability. Free legal aid and support mechanisms are not easily accessible for persons with disabilities, especially in rural areas, for women with disabilities and for high support groups (persons with mental illness, multiple and severe disabilities).

vii. Community-based Inclusive Development/ Rehabilitation

The shift in perspective from a charity or medical model situates the problem in the individual needs to be rectified, to a social and human rights-based model that identifies barriers in the environment, i.e. social, cultural, economical, political and physical, that interact with the impairment leading to disability. This entails a shift in control and power from the hands of experts and professionals and institutional care to community-based inclusive rehabilitation/ development (CBID) wherein all stakeholders are responsible and accountable for the inclusion of persons with disabilities. The economic cost of providing for the care of persons with disabilities is very high that includes the direct cost of treatment and travel. The indirect cost includes the cost of care giving as most often it is the immediate female family members, i.e. mothers and sisters that are expected to take care of the person with disability at home. This may take away valuable time of adult female members of contributing to the family income and also refrain the girl child from education. The other is the opportunity cost of income forgone by the unutilised potential and capacity of persons with disabilities by not engaging them in the development process. Rehabilitation measures traditionally focused on the impairment aspect, neglecting the other two aspects, of activity and participation limitations. Most often women and girls with disabilities are the last to receive services in a male - dominated and patriarchal society. The vulnerability is further compounded by factors of poverty, caste, class, gender, religious ethnicity and rural-urban disparities.

viii. Access: Barrier-free Environment
a. Access to Built Environment

The rights and entitlements for and by persons with disabilities in the country cannot be realised unless and until the environment, a means through which these can be so realised, is made accessible and barrier free.

Accessibility, in general, is still perceived as a specific need and requirement for persons with disabilities. The current approach relies more on creating separate facilities for persons with disabilities that require special design, adaptations and modifications. The development of standards is not informed by the users due to limited interface and dialogue between user groups and implementers.  The scene is worse in rural areas where limited efforts have been made to explore the possibilities of accessibility. There is limited understanding of the principles of universal design that are inclusive and can help create accessible environments benefiting all, regardless of ability or disability. Without this, the need for accessible environments cannot be broadbased.

Most public as well as private buildings have not used the principles of universal design and are inaccessible for persons with disabilities. This includes buildings for public use as well as independent housing. The situation is far more critical in overcrowded areas where the lack of accessibility both in homes and toilets makes it difficult to live independently and with dignity. The provisions for creating a barrier-free environment in the PWD Act 1995, especially where access to public buildings is concerned, are not mandatory and lack accountability mechanisms.

While standards for accessibility, based on universal design, are available and evolving, limited awareness, technical skills and resources for implementing these standards act as constraints. Technical courses do not incorporate the principles of universal design in their curriculum, leading to a large vacuum in informed and skilled professionals.

There are a few groups that have acquired the skills for conducting audits of buildings and plans but the available expertise is not adequate to meet the requirements. In the few initiatives taken to incorporate the accessibility features, the attempts have been partial with a focus primarily on ramps. The maintenance of such features is not attended to, reducing their usability in the long run.

Both access to information and a barrier-free built environment are a prerequisite for providing opportunities to persons with disabilities to exercise self-determination, avail themselves of their entitlements and citizenship rights and for fulfilling obligations.

b. Accessible Information and Communication

Mainstream information and communication materials, mediums and systems (print, audio-visual, face to face and/or technology based) are generally not designed to be accessible. Inaccessible information and communication not only restricts the access and opportunities of persons with disabilities to various goods and services but also limits their independent functioning, participation and productivity. This is especially true in the case of persons with communication difficulties and learning disabilities.

Persons with low vision and persons with speech and hearing impairment are unable to access information at most places used by the public due to very limited use of large print, contrasted colours, captioning, audio and video descriptions and sign interpretation. Persons with intellectual/ learning disabilities are unable to understand information presented in a complex manner. Very few public and even fewer private websites are accessible. Assistive devices are usually not available at cost-effective and affordable prices. The lack of inter-sectoral coordination and research leads to problems such as incompatibility of assistive devices and technology used by persons with disabilities with mainstream ICT devices such as TV and the Internet.  Research in ICT and accessible technology for vernacular languages are extremely limited. In the limited instances of the use of features to create accessibility, standards are not usually adhered to.

c. Access in Transport

The way the modes and nodes of public transport (road transport and pedestrian infrastructure, buses and bus stations, rail transport and platforms, air transportation and airports, maritime transport and sea ports, traffic signals and signage) are currently designed makes it extremely difficult for persons with disabilities to use them. Private transport is inaccessible to most on account of design as well as economic reasons. In rural areas, the situation is exacerbated due to poor quality of roads and means to reach the nearest points for using transport. Inaccessible transport not only restricts the access and opportunities of persons with disabilities but also affects their independent functioning, participation and productivity. It limits their contact with the outside world and restricts their visibility.

d. Access to Goods, Services and Facilities

Persons with disabilities are unable to access many goods, services and facilities that they are entitled to due to several factors, including inaccessible designs of public places, transport and information and communication, non-sympathetic as well as discriminatory attitudes of service providers, including the government and the private sector, and their own low levels of awareness of their rights as well as redressal mechanisms. The first basic premise of obtaining the access to basic service for a person with disability is the disability certificate. Apart from low awareness due to the unavailability of information in accessible formats (large font, Braille and audio), the medical centres/ hospitals responsible for issuing this certificate are not accessible. In rural areas, due to a weak transport system, it is rather cumbersome to bring the person with multiple/ severe disabilities to the centre; this is compounded by the cost of transportation that has to be borne by the family members as most of them happen to be living in abject poverty. This is further exacerbated by the non-sympathetic attitude of the staff issuing the certificate as, due to procedural reasons, persons with disabilities may have to visit them more than once. Reservations have been provided for persons with disabilities in some schemes; however, disaggregated data is not collated for persons with disabilities for most of the schemes. Support systems for ensuring that reservations and other affirmative actions are implemented are mostly not in place.


ix. Concerns of Specific Groups
a. Girls and Women with Disabilities

The intersectionality of caste, class and religious ethnicity in the Indian society further creates a nexus of an oppressive structure. This particularly affects the status, condition and position of women with disabilities as they experience triple burden on the basis of gender, disability and developing country status. Both gender and disability are socially constructed; hence a political process of challenging the existing power structures is required to bring about change. Women in Indian society hold a subservient position and are victims of violence and discrimination. This is evident in the unequal sex ratio which is 940:1000 (India) and 918:1000 (Gujarat); low preference for the girl child as is evident in the practice of female foeticide and infanticide. The health and nutrition of women is low and women and the girl child experience discrimination with regard to the sharing of food in the family and access to health services. In this scenario a girl child with disability is likely to face more discrimination than a boy with disability. In many cases the parents even admit that if a girl child with disability is fed less she would die sooner.

More men with disabilities are married and are able to find non-disabled partners while women with disabilities are more often single or married to another person with a disability from a lower family status. The NSS data indicates that the incidence of widowhood among women with disabilities is four times higher than that among non-disabled women. The share of women with disabilities who are married is half that of women without disability. The role identity of women with disabilities poses considerable challenges for them. Marriage and motherhood are difficult achievements for women with disabilities due to prevailing socio-cultural attitudes, creating a situation of ‘rolelessness’ for them in a society where these two aspects contribute significantly to a woman’s role and status as a woman. Most often girls with disabilities are married in the same household as her sister to a consecutive brother or even to the same man as marriage is likely to protect her sexuality. Persons with disabilities are often not seen as ‘normal’ human beings and are considered ‘sexually incompetent’, especially women with disabilities are considered incapable of leading a ‘normal’ family life and bringing up children. Disability after marriage for a woman with disability leads to conflict and in many cases she is a victim of abuse and domestic violence despite working hard. A disabled woman from a lower class and caste background is likely to be more affected as being landless; her main occupation is agricultural labour and cattle rearing which require considerable physical work.

Globally, women make up three-fourths of the persons with disabilities in low and middle income countries and between 65 and 70 per cent of them live in rural areas. Conversely, the International Labour Organisation (ILO) states that women are at an increased risk of becoming disabled through their lives due to neglect in health care, poor working conditions and gender-based violence. However, there is very little research carried out in developing countries to understand the condition of women with disabilities.

In a patriarchal society like India many of the gender-related issues faced by women are experienced also by women with disabilities. The UNDP, Human Development Report, 1995 states that women with disabilities are twice as prone to divorce, separation and violence as non-disabled women. Women with disabilities, especially with intellectual disabilities, are more prone to sexual violence. It has also been frequently reported that hysterectomies are forcefully conducted on young adolescent girls by families and in government-run institutions to save them from unwanted pregnancies.

Women with disabilities are not able to access the benefits of government services like health, education and vocational training due to their immobility. They are also refrained from reaping the benefits of rehabilitation programmes, even if these are delivered at their doorstep through community-based rehabilitation (CBR) services, if the CBR worker happens to be a male.

The impact of violence and constraints experienced by disability type also varies, e.g. a woman with a physical disability may experience limitations in physically escaping from the situation, while a woman with intellectual disability may be doubly victimised as she may face problems in communicating what has happened to her. For the gender and caste dimension, it would be useful to make attempts to learn lessons from the dalit and women’s movement and also for disabled people’s movement to ally with them to gain strength in numbers. Research on the status and concerns of women with disabilities will also enable in throwing light on the realities at the grass roots.

Effective strategies need to be devised where systematically undertaken research Informs policy. Advocacy also needs to be carried out so that existing policies can be implemented. The Convention on the Elimination of all Forms of Discrimination against Women (CEDAW) has adopted General Recommendation No.18 on women with disabilities, requesting State parties to include reports on the violation of rights for women with disabilities. However, a sample survey of periodic reports shows little consistent reporting on discrimination experienced by women with disabilities.

b. Persons with Mental Illness

Mental illness forms 13 per cent of the global burden of disease (WHO, 2001). Unipolar depression is the third largest contributor worldwide to the global burden of disease (Global Burden of Disease, 2004 updated). 450 million people suffer from mental and behavioural disorders. Its prevalence is far higher than what is apparent. With an increase in the complexities of life and the dwindling of stress reduction mechanisms, mental disorders are on a steady rise. Census, 2001 estimates that mental illness comprises 10 per cent of all disabilities in Gujarat. Co-morbidity with physical disorders is common.

Less than one per cent of the health budget is spent on mental health. Most of this is spent on hospital and institutional services for severe mental illnesses. Not sufficient attention has been paid to common mental disorders. Preventive and promotive services for mental health are almost non-existent. Private ‘out of pocket’ accounts for 90 per cent of the total spending on mental health.

There is an acute shortage of trained mental health professionals in Gujarat (4 psychiatrists for 1,00,000 population; less than 50 clinical psychologists and very few trained psychiatric nurses and social workers) and NGOs working on mental health. This is exacerbated by the inadequate training capacity of existing institutions in the State. Most of the mental health services are provided at hospitals for mentally ill or hospitals that have a medical training component. Community-based approaches have been piloted in 2004, but are not commonly practised.

Mental health is neither integrated in mainstream health programmes nor is there inter-sectoral coordination. Absence of advocacy groups affects the demand for more services. Low levels of information and awareness and the stigma attached to mental illness lead to even a lower utilisation of services. Less than 5000 persons sought services at the district level in 2001. At the PHC/CHC levels, there are no records of utilisation.

In Gujarat, 16 districts have been covered under the District Mental Health Programme. A draft Mental Health Policy was developed for the Department of Health and Family Welfare in 2004.

c. Persons with Multiple Disabilities

Persons with multiple disabilities are affected by two or more disabilities (cognitive, sensory, movement, eg. deaf blindness, mental retardation with cerebral palsy) and require interventions by specialists more than one. According to NSSO, 2002, 10.63 per cent of all disabled persons have more types of disability than one. The effect of multiple disabilities is more than a combination of two individual disabilities.

Majority of the training of special educators has focused on single disabilities and the attempts to provide training for multiple disabilities are very recent. A National Institute for Empowerment of Persons with Multiple Disabilities was established in 2005 that focuses on creating awareness and developing human resource for providing services to persons with multiple disabilities. Since there can be many combinations of multiple disabilities, it is difficult to cover the entire range of combinations. The educational needs of persons with multiple disabilities are different from non-disabled children or children with single disabilities. The integration of children with multiple disabilities in mainstream schools or in special schools for single disabilities is challenging. Although multi-disciplinary teams are required for their assessment and rehabilitation to develop individualised plans and monitor the progress, such coordination and collaborative planning and action is rarely seen.

The levels of awareness and understanding about the needs and issues of persons with multiple disabilities are low, both among their families as well as service providers. Networking among families or service providers working with persons with multiple disabilities is very poor. Special educators have limited opportunities for in-service exposure and training to equip them with the necessary knowledge and skills.

d. Disability and Disasters

Disasters, man-made (situations of conflict and war) or natural, are known to result in injuries, consequently leading to disability. They also have an adverse impact on persons with existing disabilities. For both these groups, the process of overcoming the short-term and long-term consequences of disaster is rather cumbersome due to their already vulnerable states – their socio-economic status, lack of voice and the inaccessible evacuation, response and recovery efforts in most disaster situations. There is a greater likelihood of their being abandoned due to lack of planning, inaccessible transport, facilities (camps/ shelters) and services. Disaster situations create new impairments and disabilities. While persons impaired during a disaster may be visible, those that are more likely to be neglected are persons with disabilities existing before the disaster.

Disruption of post-disaster services affects all and particularly persons with disabilities as they are excluded from the mainstream services as well as processes of relief and rehabilitation. Moreover, their needs are likely to be ignored, more because other survival needs assume a higher priority both among people as well as relief organisations. Also when resources are scarce, there is a possibility that they face neglect and discrimination. The kind and degree of follow-up and referrals that they require for physical and psycho-social rehabilitation is difficult as people relocate and tracking processes are not so organised. Re-integration into normal activities of the community like attending formal /informal education centres or earning livelihood, accessing services of health and education is much slower due to the impairments and issues of accessibility.

Efforts for community-based disaster risk reduction and disaster preparedness are recent and the role of vulnerable groups in disaster management processes, including that of persons with disabilities, remains unexplored. The needs of persons with disabilities continue to be excluded over the more long-term recovery and reconstruction efforts; thereby the opportunity to ensure that towns /cities are accessible and inclusively resilient to future disasters is often missed. In Gujarat, after the 2001 earthquake there was an attempt by civil society groups and Disabled Persons Organisations to advocate the inclusion of accessibility in the designs of all the buildings that were reconstructed.

Disability is not as yet a part of the agenda of most development organisations, even though the social model has led the focus away from the person–centred health and welfare approach followed until very recently. Most examples of mainstreaming disability in disaster situation are reactive and not proactive wherein persons with disabilities need to be included before, during and after the disaster. Even the Hyogo Framework for Action (2005 – 2015) adopted by the World Conference on Disaster Reduction to make the world safer from natural hazards is not inclusive of disability.

However, the Sphere Standards launched by a group of international NGOs for humanitarian aid has developed several tools to improve the quality of assistance to people affected by disasters and accountability of States and humanitarian aid to beneficiaries and donors. The Sphere Standards have included persons with disabilities along with children, elderly, gender and HIV/ AIDS. The specific standards relate to participation and representation of all groups in assessment, response, targeting and monitoring and evaluation. The standards also refer to aid workers’ competencies and responsibilities, management and support of staff. At the mid-term review of the Biwako Millennium Framework in 2007, an explicit strategy was formulated for disability inclusion in Disaster Risk Reduction (DRR), including in the Hyogo Framework for Action with concepts of universal design to be incorporated in infrastructure development in disaster preparedness and post - disaster reconstruction activities. Article 11 of the CRPD focuses on Situation of Risk and Humanitarian Emergencies covering persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies, and the occurrence of natural disasters.

Even in normal situations, there is a dearth of trained rehabilitation experts, the more so in rural areas. Mustering adequate human resource in disaster situations is even more difficult, especially on a sustained basis. Community-based skills in these areas are not honed to be able to fill in the gap. Girls and women with disabilities and persons with mental illness and multiple disabilities are the most vulnerable in disaster situations.

IV. Disability Rights Movement in India and the Emergence of DPOs

The advent of the disability rights movement could be traced back to1887 with the setting up of the first centre for the visually impaired in Ludhiana and the first school for the visual /hearing and speech impaired was set up in 1902 at Mysore. Following this the trend for initiating special schools/ centres/ vocational and rehabilitation centres for catering to various types of impairments continued. The Alma Ata declaration in 1978 accepted community-based rehabilitation (CBR) as a global strategy to address the issues and concerns of persons with disabilities. Since the ’90s CBR is being implemented by NGOs to reach out to persons with disabilities in rural areas too at their doorstep.

The concept of self-advocacy by disabled people’s organisation could be traced back to the formation of uni - or single - disability group called the National Federation of the Blind (NFB) that was formed in the ’70s and advocated the rights of the blind as well as other persons with disabilities. Seeing this other uni - or single-disability organisations and several parents groups of children with disabilities were also formed. The All India Confederation of the Blind (AICB) was set up in September, 1980. It has now emerged as a premier self-help national level-organisation of the blind with vide recognition within and outside the country. The Confederation is engaged in a wide array of activities for addressing issues and problems concerning persons with visual impairment (blind and low vision) in the country. It runs schools for the visually impaired, produces material in accessible formats, provides vocational training and is engaged in lobbying and judicial activism. Its membership constitutes of 24 local organisations working for the blind in 13 States (website: www.aicb.org.in)

In the early ’90s the first cross-disability organisation that was set up to advocate the rights of persons with disabilities was the Disability Rights Group (DRG). It was also motivated by the limited efforts towards inclusion of disability in laws and policies. It is primarily a Delhi-based loose network of people with disabilities, their families and supporters, which enjoys a pan-India support through the National Disability Network. DRG's objective is/was realising equal opportunities for persons with disabilities as a matter of right as opposed to the charity model that was prevalent in the ‘90s and continues to exist in society's general outlook towards disability. It is consistently engaged in advocating the rights of persons with disabilities and is actively engaged in influencing the policy environment.

A group of people with different disabilities established Action on Disability and Development in India as an NGO in 1989 in Bangalore. The main purpose was / is to enable persons with different disabilities advocate their rights for inclusion and to mainstream disability into existing structures. Recognising the phenomenal potential of the mainstream NGO sector in India, especially in rural areas, it developed a strategy and a methodology to influence and equip them to work with persons with disabilities as they do with other people living in poverty and with discrimination. It motivates persons with different disabilities to form self-help groups (SHGs) in villages and at the block level. Over the years, it has successfully equipped over 200 NGOs to work with over 100 thousand persons with disabilities to improve their quality of life. ADD India is a resource agency. ADD India works in partnership with NGOs engaged in various issues such as education, livelihood and health. Presently it is partnering with 45 NGOs and DPOs. It has formed federations of disabled people in one district each in Andhra Pradesh, Karnataka and Tamil Nadu.

Since then, with the support and efforts of several international and national NGOs and some State governments, collectives/ self-help groups of persons with disabilities from cross-disabilities have been initiated. These groups of persons with disabilities initiated with the intent of promoting self-representation and advocacy for their own rights and entitlements are also recognised as disabled persons organisations (DPOs). For the past two decades DPOs from various parts of the country have been active and have achieved some legal changes like the Persons with Disabilities Act 1995, the National Trust Act 1999, the ratification of the UNCRPD, formation of the Rights of Persons with Disabilities Bill 2012 and suggested amendments to the Right to Education Act to include the rights of children with disabilities. They have influenced policy making like formation of the National Policy on Disability and subsequently several States have formed their respective policies. Advocacy efforts have also facilitated the inclusion of persons with disabilities in the Census 2001 and 2012, ensuring accessible electoral process, specific budgetary allocation in the 11th and 12th Five-year Plans and formulation of Rights of Persons with Disabilities Bill in line with the CRPD.

While there is a varied understanding on what DPOs should be and what they should be doing, for our purpose we examine here the nature of their organisation and what they are currently engaged in doing.

V. Nature and Challenges Faced by BPOs/ DPOs in India

Overall the spread and the number of uni-disability and cross-disability organisations are sparse in the country. Most BPOs or uni-or single-disability organisations and DPOs’ cross-disability organisations are semi-structured informal collectives. They do have an operational informal structure to facilitate the implementation of activities undertaken. But very few have bye-laws or statuses and Memorandums of Association. Neither the groups nor the federations are registered, but some of course have begun this process. Most DPOs are either supported or mentored by INGOs or NGOs or by the State government. These are membership-based organisations or self-help credit and thrift groups and the members offer their services on a voluntary basis as activists. The INGO/ NGO/ Government staff are deputed to provide support on an on-going basis and also extends financial support for conducting the activities undertaken by the DPOs.

The following could be some of the challenges faced by the BPOs/DPOs that have been derived from secondary literature and personal interaction. These could, however, vary from region to region based on experience. The challenges have been enumerated below to enable other stakeholders who do not have direct interaction with DPOs. This brief will enable them to devise a suitable methodology and identify participatory tools to enable the DPOs conduct a Situation Analysis and Self-Capacity Assessment. When the DPOs will conduct the exercises at the field level with their core committee members, it is hoped that we will get a more vivid picture of their situation and what they want to be and become and the challenges faced.

References

___Adlakha, Renu and Others (eds.). (2009): Disability and Society: A Reader, Orient Blackswan Private Limited.

___Albert, Bill (2004 a): ‘Briefing Note: The social model of disability, human rights and development’: Enabling Disabled

___ People to Reduce Poverty, Disability KaR (Knowledge and Research) Research Project.\

___Amartya Sen (undated), Disability and Justice

___Coleridge, P. (1993): Disability, Liberation, and Development, OXFAM (UK and Ireland), Oxford.

___Dalal, A.K. (2000): 'Social Attitudes and Rehabilitation of People with Disabilities: The Indian Experience,' Journal of Rehabilitation, Vol. 5, pp 15-21.

___Department for International Development (2000): Disability, Poverty and Development, Issues Paper, DFID.

___Elwan, Ann (1999): Poverty and Disability: A Survey of the Literature, The World Bank.

___Gill, Mehar Singh (2007): ‘Politics of Population Census Data in India’, Economic and Political Weekly, January 20, pp 241-249.

___Government of Gujarat (2003): Priorities for Mental Sector Development in Gujarat: The Mission Report; Care Department of Health and Family Welfare

___Government of India:

- Census of India. (2001)

- Provisional Population Totals (2011)

- National Policy for Persons with Disabilities (2005), Ministry of Social Justice and Empowerment

___Handicap International and European Commission: (2009): Mainstreaming Disability into Disaster Risk Reduction: A Training Manual

___Hans Asha and Patri Annie (2003) et.al. ‘Women Disability and Identity’, Sage Publication, New Delhi

___Ilagan Venues M (2003), ‘Ensuring the Inclusion of the Gender Dimension in the O ngoing W ork for Disability Rights

___ Convention’ UNESCAP, Meeting Document, August 18-22, 2003, Bangkok, Thailand.

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Vikalpa Vol 29 (1) Jan. -Mar.

___Jeffery Roger and Singal Nidhi (2008), ‘Measuring Disability in India,’ Economic and Political Weekly, March 12.

___Mehrotra Nilika (2004); ‘Women, Disability and Social Support in Haryana; Economic and Political Weekly, December 25.

___Miller, Carol and Albert, Bill (2005): ‘Mainstreaming Disability in Development: Lessons from the Women’s Movement’

Disability KaR Research Project.

___Mitra Sophi and Sambandhmurti Usha (2006), ‘Disability Estimates in India: What the Census and NSS Tell Us,’ Economic and Political Weekly, September 23.

___Mohapatra Sruti and Mohanty Mihir (undated), Abuse and Activity Limitation; Study on Domestic Violence Against

Disabled Women in Orissa, India, Swabhiman, Orissa, India.

___Oliver, Michael (1996): Understanding Disability: From Theory to Practice, Palgrave, New York.

___Sayer, A. (2003): Equality and Moral Economy, Lancaster University, Department of Sociology

___Sightsavers (2012): Policies and Schemes of Central and State Governments for People with Disabilities

___Sightsavers and Christian Blind Mission (2012): Voicing Concerns: Road Map and Strategic Document on Advocacy

and Campaigning.

___Thomas Maya and Thomas M.J. (2003), ‘Addressing Concerns of Women with Disabilities in CBR, UNESCAP Workshop on Women with Disabilities August 18-22, 2003, Bangkok, Thailand.

___Thomas, Phillippa (2004): ‘DFID and Disability: A Mapping of the Department for International Development and

Disability Issues, Disability Knowledge and Research Programme.

___United Nations

___UNDP (1995), Human Development Report 1995, Geneva, 1995.

___UNESCAP (2005): Biwako Millennium Framework for Action, Asia and Pacific Decade of Disabled Persons 2003 – 2012.

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___UNESCAP (2005): Biwako Millennium Framework for Action, Asia and Pacific Decade of Disabled Persons 2003 – 2012.

___INISDR (2005): Hyogo Framework for Action 2005 – 2015: Building the Resilience of Nations and Communities to Disasters

___UNNATI and Handicap International (2008): Civil Society Engagement for Mainstreaming Disability in Development Process

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___World Health Organisation and World Bank (2011): World Report on Disability

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Website: http://www.who.int/healthinfo/global_burden_disease/GBD_report_2004update_full.pdf

___Yeo, Rebecca (2005): ‘Disability, Poverty and the New Development Agenda’, Disability Knowledge and Research Programme.

25

3.2.2 Session Plan and Facilitation Note – Approaches to Disability

Time: 3 hours (do this exercise with suitable breaks)

Method: Case analysis or presentation of skits

Material: Flipcharts/ whiteboard/blackboard, markers, handouts of cases [one each on charity, medical, social and rights-based models/approaches] in Braille, large print and pictures depicting the story and Reading 1 Understanding Disability; and one set of cases from Handout 1

Objective:

Process:

Photo of Skit performed from the cases

Photo of skit being performed from the cases

Facilitator ’s note:

26

3.2.3 Cases for Approaches to Disability (Handout)

i. Safia’s Story (orthopaedic disability) – Charity Model

Safia lives with her mother and two elder brothers in a remote village of South 24-Pargana district of West Bengal. Now 15 years old, Safia lost her mobility due to spinal cord injury at the age of 8 years. Her family tried their best, but with limited income it was not able to continue her treatment for a long time. Safia became completely dependent on her mother. After a few years, the brothers refused to take any responsibility of Safia and her mother, and began to live separately with their own families. Safia and her mother now live in a small hut.

Due to aging and ill health, Safia’s mother is not able to do any work to earn a living. There is a belief within the community that if one helps the aged, ailing and disabled persons, then one is freed from sins. Many times the neighbours would give them food and old clothes out of mercy, but this was not enough for their living. This forced Safia to start begging. Gradually, with the help of her mother, Safia started begging, sitting beside the main road of their village. With her earnings, they can only manage one meal a day.

During Durga Puja (a major Hindu festival in West Bengal), Safia heard that one of the Puja Committees of their village would be distributing new clothes and blankets among the poor households. The place was far from Safia’s house but somehow she managed to reach there and got the clothes and blankets. Knowing her condition, one of the members of the Puja Committee gave hundred rupees more to Safia. Safia’s life continues like this.

Script for skit - Safia’s Story (orthopaedic disability) – Charity Model

Scene I

( A t the home of Safia who has locomotor disability)

Safia’s Mother (Alema): What happened?

Safia: Mom, please come here!

Safia’s Mother (Alema): Oh God! We haven’t done any harm to anybody. Then why did this happen to me? My two sons are not looking after me. My only daughter has become disabled at the age of eight years. We have taken her to many doctors and spent a lot of money, still she is not able to stand and walk. Now we have to beg for our survival.

Safia: Mom, why are you calling names to God? Does he hear you at all? If he did hear, then we wouldn’t be in such a poor condition. You didn’t continue my education, then I might have been able to earn some money. Now we have no other option but to beg.

Neighbour: Alema, how are you and your daughter?

Safia’s Mother (Alema): It’s going on as you see.

Neightbour: Did you get rice and dal for today?

Safia’s Mother (Alema): No, we didn’t get much for today. Tomorrow we will go near the main road, then we might be able to get a little more…

Neighbour: You take this packet of rice and dal and have your meal.

Safia’s Mother (Alema): Thank you. May God bless you!

Neighbour: Safia, how is it going on?

Safia: Yes, it’s fine….

Neighbour: Alema, I have to go now, I still have to cook some food….

Safia’s Mother (Alema): All right…

Scene II

(Next day)

Safia’s Mother (Alema): Safia, let’s go to the main road and see how much we can gather….

Safia: (on the main road) Mom, we can sit here…..

Safia’s Mother (Alema): Yes. Many people go by this road…

Beside the main road….two pedestrians are discussing the coming Durga Puja (a festival celebrated in October, specially in West Bengal)

Pedestrian: Do you know Durga Puja will start next week. I have heard that Mukul Sangha Club will give blankets and new clothes during the Puja to the poor and disabled people of our village…..

Safia’s Mother (Alema): Can you tell me who will give blankets and new clothes?

Pedestrian: I have heard that Mukul Sangha which is located near the big ground will distribute these during the Puja. You can go there with your daughter….

Safia’s Mother (Alema): When will they give?

Pedestrian: After five days…..

Safia’s Mother (Alema): Will we also get blankets and clothes?

Pedestrian: Yes, you and your daughter will also get them. You should go there together.

Safia’s Mother (Alema): OK…Safia, we will go there and then we will get new clothes and blanket.

Scene III

(At the premises of Mukul Sangha Club after 5 days)

Safia’s Mother (Alema): Safia, let’s go….We have become very late…the van driver took a long time to come…

Safia: Mom, if there is a big crowd there, then how will I go?

Safia’s Mother (Alema): What will you do Safia? We still have to go…

Safia: No, mom….I can’t go further. Please call someone from the club…..

Safia’s Mother (Alema): Oh God! What a crowd is there…Hello, can you tell me where to go to collect blankets and new clothes?

Member of Mukul Sangha Club: Yes, you have come to the right place….from here you will get blankets and clothes. For whom did you come?

Safia’s Mother (Alema): I have come for my daughter…She can’t walk…I have asked her to sit outside the club…

Member of Mukul Sangha C lub: Come, let’s see….Oh God! How did you bring her with you?

Safia’s Mother (Alema): What shall I do? We came in a van…otherwise it is difficult for me to bring my daughter….

Member of Mukul Sangha Club: OK, I will see what we can do for you…we will do one thing, help her to sit in this chair….
(With the help of her mother and the club member, Safia sat on a chair)

Member of Mukul Sangha Club: Safia, sit here for a while….I will bring the new clothes and a blanket for you… Take it…. Keep this 100 rupees and enjoy your Puja with your mom…. We are feeling very sad for you. This year we could only do this much, but next year we will definitely try to give something more….

Safia’s Mother (Alema): May God bless you!

Member of Mukul Sangha Club: Safia, enjoy your Puja with your mom….

Safia: Yes, sir… of course…. We will come back again next year.

27

ii. Safia’s Story (orthopaedic disability) - Medical Model

Safia lives with her mother and two elder brothers in a remote village of South 24-Pargana district of West Bengal. At the age of 8 years, Safia lost her mobility due to spinal cord injury. Her family tried its best for her treatment and contacted an Orthopaedic Surgeon attached to the National Centre for the Orthopedically Handicapped. The doctor suggested a surgery for Safia. But after the surgery Safia’s mobility did not improve. She could stand with difficulty but was not able to walk.

As per the doctor’s instruction, Safia contacted the rehabilitation unit that receives assistive devices through a government scheme. She found that the manufacturers produced assistive devices one size larger than required. The scheme did not provide for fitting of these devices as per the individual needs of children and persons with disabilities. The rehabilitation unit gave her a wheelchair and a pair of crutches and shoes free of cost. After coming back home, Safia found that she was not able to use the wheelchair comfortably either in her small room or on the uneven roads of her village. Before the surgery she was able to do her daily activities by crawling on the ground, so she again started doing the same. Now her crutches and wheelchair are left in a corner of her hut and she has given them up.

Script for skit - Safia’s Story (orthopaedic disability) – Medical Model

Scene I

Safia’s Mother (Alema): Oh God! How can I manage all this…the room is very dirty and I have to clean it….Safia is growing but can’t do anything on her own, even combing her hair …..

Safia: Mom, please help me in combing my hair…. But slowly

Neighbour: Safia’s mom…. How are you?

Safia’s Mother (Alema): As usual ….

Neighbour: And how is Safia?

Safia: Oh aunty, please come and sit here….

Neighbour: Do you know, there is a big hospital in Kolkata for those who are unable to stand and walk….

Safia’s Mother (Alema): What shall I do by knowing all this?

Neighbour: They provide treatment free of cost…

Safia’s Mother (Alema): We have spent a lot for her treatment….still there is no improvement…..

Neighbour: But you can take her to this hospital… they will provide a wheelchair, crutches and special shoes free of cost…

Safia: Mom, please talk to my elder brother…. Please ask him to take me to this hospital….

Safia’s Mother (Alema): OK…I will talk to your brother…let’s see, if he is willing to go with us…

Neighbour: Alema, I have to go now…but you should definitely visit the hospital….

Scene II

(Safia arrives at the Hospital for Orthop a edically Handicapped in Kolkata with her mother and elder brother)

Safia: Mom, I am not able to walk any more…

Safia’s Mother (Alema): Doctor, I came for the treatment of my daughter…

Doctor: What has happened to her?

Safia’s Mother (Alema): She met with an accident at the age of 8…since then she has been unable to stand and walk…

Doctor: Did you consult a doctor for treatment before?

Safia’s Mother (Alema): Yes, we had taken her to a local doctor in our village…

Doctor: We have to do an operation immediately…. Then she will be fine…

Safia’s Mother (Alema): Oh God! Do we have to spend a lot for this operation?

Doctor: You don’t worry about the expenses….here we operate free of cost and after the operation, she will be able to walk

Safia’s Mother (Alema): Really! Will she be able to walk?

Doctor: Yes. I have done many operations….now you can see these people moving around….before the operation they were like Safia ….but now they are able to move around, Safia will also be able to walk around like them.

Safia: Doctor! Will I be able to walk?

Doctor: Yes, you will be able to…but you need to do some diagnostic tests before the operation…I am giving you the prescription…you talk to one of our Hospital Staff (Deben) for these tests….Deben, please come here…

Deben: Yes, sir…

Doctor: You take this patient and her family members with you, keep a record of her name and address and let them know the date of the operation…. You please go with him….he will give a date for the operation.

Deben: Please come with me… What is the name of your daughter?

Safia’s Mother (Alema): Safia Khatun…

Deben: How old is she?

Safia’s Mother (Alema): 10 years

Deben: Please come with your daughter on the 15th of this month for her operation… you have to come by 10:00 a m

Safia’s Mother (Alema): How many days are left for the operation?

Deben: Come next Saturday…

Scene III

(After Safia’s operation at the hospital)

Doctor: How are you, Safia?

Safia: Still having pain in my leg…

Doctor: You are still having difficulty in standing up and walking…isn’t it?

Safia: Yes…

Doctor: Don’t worry… the pain will gradually reduce. But she needs to wear a pair of shoes and has to use a wheelchair…. You please take it from Deben… Deben, come here….

Deben: Yes, sir…

Doctor: Listen, give a pair of shoes and a wheelchair to Safia and instruct her on how to use them… Safia, please go with him…now I have to go for an outdoor visit.

(Safia is given a wheelchair from the hospital)

Safia: Mom, I will go home in my wheelchair….

Safia’s Mother (Alema): Oh! How nice…

Safia: Mom, now I will be able to go out and roam in the neighbourhood like others on my wheelchair…

Deben: It will be very helpful for you…

Safia’s Mother (Alema): Now you don’t need to spend the whole day sitting inside the home…

Safia: Yes, mom, I will go to Zarina aunty’s house… how do I use this wheelchair?

Deben: I am helping you…now see how you can use it…

Scene IV

(Safia arrives in front of her house…)

Safia: Brother, why does this wheelchair not go inside the house? Please try…it will go… Oh no it’s not going in!

Safia’s brother: Mom, government aids are of no use…

Safia: Let me try to stand up…

Safia’s Mother (Alema): Yes, it will be better…

Safia: Oh God! I can’t stand… the shoes are bigger than my size…

Safia’s brother: I told you earlier that we are wasting our time…you will not be benefited…

Safia: Mom, now what shall I do?

Safia’s Mother (Alema): All our efforts have gone in vain…the shoes and the wheelchair will now sit in a corner of the house…

iii. Safia’s Story (orthopaedic disability) – Social Model

A few months back, a young lady who was the community-based rehabilitation worker (CBR) of a local NGO working with persons with disabilities, visited Safia’s house. After a long discussion with Safia’s mother, she became aware about her condition. Thereafter, she started visiting Safia’s house once in a week to work with her and help her in doing her activities of daily living. This was the first time when Safia received support to manage her disability on her own and enjoy her life like others.

With the help of the CBR worker, she started using her crutches and wheelchair which were modified as per her requirements. This support helped her to gain self-confidence. From then on, she began to receive information on the entitlements of persons with disabilities.

Gradually, the field staff started working with her family members and neighbours to remove social barriers (physical and attitudinal barriers) which restricted Safia’s inclusion in mainstream society. A slope/ramp was made at the entrance of the hut to enable Safia come in and go out in her wheelchair. The CBR worker met the panchayat head (Pradhan) to discuss the levelling of the village road so that Safia could use her wheelchair. The CBR worker also discussed all the poverty alleviation and livelihood schemes so that Safia could also access these. Safia started visiting her neighbour’s house and got the opportunity to meet other people including persons with disabilities living in the same village, by using the wheelchair.

Script for skit - Safia’s Story (orthopaedic disability) – Social Model

Scene I

Safia: Mom, What shall I do now?

Safia’s Mother (Alema): It’s our fate….you can’t do anything…..you have to be confined to the home…

NGO worker:Is anyone there in this house?

Safia’s Mother (Alema): Who is calling?

NGO worker:I am Uma. I have come from an NGO…(sanstha)

Safia’s Mother (Alema): Please come in!

NGO worker:Is she your daughter, Safia?

Safia’s Mother (Alema): Yes, sister…Please sit here…

NGO worker:Does she do anything on her own?

Safia’s Mother (Alema): No, sister…I have to do everything for her…but I am getting old and now it’s difficult for me to do all this….she can’t do anything on her own…

NGO worker:If you can give some time for her, then I will teach her some activities of daily living…

Safia’s Mother (Alema): She will be able to do the daily activities! But how is this possible?

NGO worker:You will see…. She will be able to take care of herself and also help you in cooking as her hands are functioning….

Safia’s Mother (Alema): Let’s see…if anything happens with your effort….

NGO worker:Only you have to spare some time for Safia, initially….

Safia: Umadi, will I be able to do things on my own?

NGO worker:Yes, you will….you don’t need to depend on anyone else…. What is this? (points out to the wheelchair lying in one corner)

Safia: I have got this wheelchair donated by a big hospital in Kolkata….

NGO worker:Why don’t you use it? Is it bigger than your size?

Safia’s Mother (Alema): Yes, sister…We brought it with great difficulty, but she couldn’t use it…it’s difficult to take it out from our house.

NGO worker:The condition of the road is also very bad…Safia, today I will help you in using this wheelchair….

(With the help of her mother and Umadi, Safia was put onto the wheelchair…)

NGO worker:Alemadi, do you know how to move a wheelchair on the road?

Safia’s Mother (Alema): I don’t know, Sister….

Scene II

NGO worker:Oh God! The condition of the road is so bad…Why don’t you visit the panchayat for improving this road?

Safia: Why do we not visit the panchayat? They will not do anything….

NGO worker:the panchayat is for the development of your village….I would like to talk to your brother…please ask him to meet me…

Scene III

NGO worker:Your sister could not use this wheelchair…but if you make a ramp in front of your house, then she will be able to go out….

Safia’s brother: Ramp! What do you mean by this?

NGO worker:We can make a ramp with mud, this means a slope… once this is made it would be easy to take the wheelchair out from the house and then Safia will be able to go out on her own…

Safia’s brother: But for this we need to spend a lot….

NGO worker:You don’t have to spend money….the only thing you have to do is to gather some mud from your village…then you and I will make a ramp…

Safia’s brother: OK, I will do that…

NGO worker:OK… we will do it on Monday…

Scene IV

NGO worker:Safia, how are you? Are you using your wheelchair?

Safia: Yes, Umadi …

NGO worker:Alemadi, are you facing any problem in using this wheelchair?

Safia’s Mother (Alema): No, not at all…It is because of you that my daughter is able to go out now….

NGO worker:Does Safia help you in the household work?

Safia: Do you know? I can now use the wheelchair on my own…

NGO worker:Oh, very good! Alemadi, I told you that you only have to give some time for her, then she will be able to do everything on her own… Safia, today I will take you around the neighbourhood… will you introduce me to your neighbours?

Safia: Yes, of course… let’s go to Jarina aunty’s house…

NGO worker:Could we go this way?

Safia: Yes…Jarina aunty is sitting there…

Jarina: Safia is coming in her wheelchair….Safia, will you work with us?

NGO worker:All of you are involved in zari (embroidery) work…

Jarina: Safia, who is she?

Safia: She is Umadi. She helped me in learning the activities of daily living…

NGO worker:I have come from an organisation which works with children and persons with disabilities. Safia’s mother is getting old…. So, I am helping Safia to do everyday work on her own… with our help she will become independent like others. Could she join you and learn zari (embroidery) work?

Jarina: Yes, she can learn and do the work with us…

NGO worker:She is having difficulty in walking but her hands are all right…

Jarina: Safia, from tomorrow onwards you can come here…

Safia: OK aunty, tomorrow I will certainly come…

NGO worker:You may not know that there is an Act for persons with disabilities and they also have equal rights. They have to fight for their rights…

Safia: Umadi, what are my rights?

NGO worker:You have the right to education, right to employment…But you were not able to continue your education….I will teach you at home…. But you should help other children with disabilities in your village to continue education…

Safia: Oh, that’s great! If you help me to complete my studies, then I will help other children to go to school…

NGO worker:OK, now we have to go…

Safia: Jarina aunty, I will come tomorrow…

28

iv. Safia’s Story (orthopaedic disability) – Rights-Based Model

Safia became aware about a government scheme Mahatma Gandhi National Rural Employment Guarantee Scheme (MGNREGA) that aimed to provide employment to any person demanding work so she visited the gram panchayat for collecting information about the scheme. The panchayat pradhan behaved very rudely and said that she was good for nothing and it would be better for her to stay at home.

Safia shared her experience with her friends who had other disabilities. One of her friends with hearing impairment also shared that although the pradhan behaved well when he asked for the information on the status of job allotment under this scheme, he had to sit there for hours, and till date he had not been given any employment.

Suddenly, it struck Safia that they were all trying to get their entitlements, ensured by the State, through Disability Law individually. The Pradhan who is powerful was ignoring their needs and rights. So she proposed that if they would go to the panchayat as a group then the pradhan may take the necessary steps for distribution of Job Cards, as per the law the panchayat is bound to do so.

So they all decided to visit the panchayat as a group. On seeing a group of adults with disabilities the pradhan gave time to listen to their demands and assured them that he would personally look into this matter for early distribution of Job Cards and other entitlements.

Script for skit - Safia’s Story (orthopaedic disability) – Rights-Based Model

Scene I

(Safia goes to the panchayat to collect an application form for applying for a Job Card under the MGNREGA Scheme…)

Joydeb (Panchayat Member): Sir, please sign in this income certificate

Panchayat Pradhan: Joydeb, did you check all the documents? Is everything all right?

Joydeb (Panchayat Member): Yes, sir…everything is fine

Panchayat Pradhan: Be sure that everything is fine…otherwise we may be in trouble…who has requested for this income certificate?

Joydeb (Panchayat Member): This girl, sir (Pointing out to a woman standing near by)

Panchayat Pradhan: Who is she?

Joydeb (Panchayat Member): She is the daughter of Panchu…

Panchayat Pradhan: Oh! She has become a woman now… What will you do with this income certificate?

Panchu’s daughter: I have to submit this certificate in my college to get concession in fees….

Panchayat Pradhan: OK it’s fine… Joydev, have you noticed that our panchayat is growing… girls are now studying in colleges….

Joydeb (Panchayat Member): We are doing well…isn’t it?

Panchu’s daughter: Thank you sir… I have to go now…

Panchayat P radhan: OK. Continue your studies, we are there for you…. Joydev, whatever the opponents say, but we are working for the benefit of the people…

Safia: Sir, please give me an application form for the job card…

Joydeb (Panchayat Member): Application form for a job card!

Panchayat Pradhan: Are you Safia?

Safia: Yes, sir…

Panchayat Pradhan: You are living in north colony… what will you do with a job card?

Safia: I will work under the MGNREGA scheme…

Joydeb (Panchayat Member): Too many non-disabled people are there in the queue and till date we have not been able to give them a job at all…and you are saying that you will work…

Panchayat Pradhan: OK, now tell me one thing…is getting a job very easy nowadays? Is it like a fruit? Whoever will come will, we will pluck it from the tree and give it? Joydeb, let’s talk to her and make her understand that it’s not so easy…

Now you listen, Safia, you are a disabled girl… you go home… If anything (facility) will come for people like you, I will let you know. OK. Now you go… What will you do if you get a job? Will you be able to do it? You should think before you come to us…go, go home…

Safia: Then, I will not get the form?

Panchayat Pradhan: Many people are sitting here for a job. Instead of giving them, how can I give an appointment to a girl with a disability?

Joydeb (Panchayat Member): You are absolutely correct… How is this possible?

Panchayat Pradhan: Listen, if anything will come for disabled persons, then I will help you to get it. We always help you in getting things…during the Puja, you have got new clothes and blankets… now you go… we have a lot of work to do…

Joydeb (Panchayat Member): Go… and let us do our work…

Scene II

(Safia shares her experience with other young adults with disabilities living in her village…)

Safia: Do you know? They refused to give me an application form for applying for a job card…

PWD 1: I have got a job card, but haven’t got a job till date…

PWD 2: I have also had the same experience…

Safia: I think, we all have to go to the panchayat together and demand our rights.

Other PWDs (Together): You are right…we will go together…

Scene III

(Safia and her friends c o me to the panchayat….)

Joydeb (Panchayat Member): Sir, we have to finish all these pending tasks

Safia and her friends: May we come in, sir?

Panchayat Pradhan: We are doing good for the people, but still they are saying that we are here for making money and for our own benefit…

Joydeb (Panchayat M ember): This is true…if you work for your country, you have to face all these comments…

Safia and her friends: May we come in, sir?

Joydeb (Panchayat Member): Yes, come in…Sir, Safia has come with all her other disabled friends…

Panchayat Pradhan: What do they want?

Joydeb (Panchayat Member): Sir, Safia had come before for a job card…

Panchayat Pradhan: Oh yes, Safia came earlier… Joydeb, you will do one thing…You note down their details, I mean names, addresses etc. of all of them and give them to me…Listen, you are the people for whom I am sitting in this chair… I always think how I can help you…next time when some work will come under MGNREGA, all of you will get a job…Joydeb, did you speak to the BDO (Block Development Officer) about employment of persons with disabilities in our panchayat?

Joydeb (Panchayat Member): No, sir, I was busy in some other work…

Panchayat Pradhan: No, you have to do it first. How can you forget that we are sitting here for them?

Joydeb (Panchayat Member): OK sir, today I will speak the office

Panchayat Pradhan: Don’t worry, all of you will get a job… now you go home.

Safia and her friends: OK, sir…

PWD 1: Safia, you were refused because you came alone… today we have come together and that is why the Pradhan has taken immediate steps for our employment. Now we must demand our rights collectively….

29

v. Shiva’s Story (visual impairment) – Charity Model

Shiva is a boy with visual impairment by birth and lives in South India. There is very little acceptance of his disability by his family and community. His mother has sympathy, but is tired due to constant nagging and stigma extended by the family and the community members. He is not allowed to participate in any social gathering/occasion; the family’s economic condition is weak. One day a Swamiji (ascetic) from ashram for the disabled visits the village to create awareness about the activities of the ashram, Shiva’s parents approach the Swamiji, and Shiva is admitted to the ashram. In the ashram the Swamiji provides shelter, clothes, and food. The parents visit the ashram once in 2 to 3 months, and never take Shiva back home. Shiva lives in the ashram as a burden for his entire life.

Script for skit - Shiva’s Story (visual impairment) – Charity Model

Scene I

Shiva: (sitting in a corner of the house with his hands on his head) I am a burden on every one

Mother: Why are you sitting here my son Shiva?

Father: Why are you consoling him? You are always behind him. He is a useless burden on us and has made our life miserable. (Looking at his son) Your mother does not have any other work. She is always thinking about you.

Shiva: Dad, please take me to the toilet!

Father: Hey, don’t call me Dad, you are always like this, learn it on your own. Don’t be a burden on us. I am fed up of you!

Neighbour (approaching Shiva’s mother) : Why are you crying sister!

Mother: My husband always harasses me due to my son’s disability.

Scene II

Neighbour: (Meets the Swamiji visiting the village and briefs him about Shiva)

Swamiji: Please take me to Shiva’s home. We provide food, clothing and everything free for such people at the ashram. We will provide him with a comfortable life.

Scene III

(Swamiji visits Shiva’s home)

Mother: Swamiji, please help us, my husband always scolds me, I don’t know what to do with my child.

Swamiji: Send your child to our ashram; we will take care of him.

Father: (pleads to the Swamiji with folded hands ) Please! Take my child there, I am fed up of him, everything should be done for him, take him, please take him away!

Shiva: My father always scolds me, please take me to your ashram Swamiji!

Swamiji (looking at the parents) : I will take him but you should come to the ashram and see your child often.

Father: Is it okay if I come once in a year?

Mother: (crying) I don’t want to send Shiva away.

Neighbour: (holding the mother’s hand) Please let your child go, they will take care of him. You are not able to take care of him.

Father: (scolding the mother) Let him go, so that we will be free!

The child goes with the Swamiji.

vi. Radha’s Story (cerebral palsy) – Medical Model

Radha is a three-year-old girl, she is suffering from cerebral palsy as a result of which she is not able to walk, speak properly, recognise others, and is always sleeping in bed and has stiffness of muscles. She was born in Chimmanakatti village, Badami taluk, Bagalakote district of Karnataka. In this village there is no access to medical services and her father and mother work as labourers on the farm. Radha’s parents noticed that their child was not able to walk at the age of 3 years and took her to the Bagalakote district hospital at the behest of the ASHA Workers (Health Worker). When the doctor assessed the child, he told the parents that she suffered from cerebral palsy and she would not be normal like other children. The doctor provided medicine for her fits/seizures and taught some physiotherapy/ exercises to be done at home every day for lifetime. After this the parents lost interest in their child, and the mother would do exercises and give medicines to Radha whenever she found time.

One day Radha told her mother that she would like to play and sing with the other children in the village. But the mother replied that the doctor had asked her to take medicine and some exercises every day and nothing more; so she should keep quiet and stay in bed all day long.

Script for skit - Radha’s Story (cerebral palsy) – Medical Model

Scene I

(At h ome)

Mother: (tells the father) Please give water to Radha.

Father: (grumbling) You are always ordering me.

Mother: Oh! She is not eating, she is very adamant!

ASHA Worker: (visits the home) How are you?

Father: Oh! My child had fever, she is three years old but she is not able to do anything on her own,

Mother: We have visited so many temples and are praying, nothing is improving.

ASHA Worker: You should visit the hospital and get a check-up done.

Mother: I want my daughter to be fine, I have only one child.

Scene II

( A t the hospital Out Patient Department (OPD)

Doctor: (looks at the parents) What is the problem?

Mother: My child is very sick, she is only lying down all the time. She cannot do anything on her own, cannot hear, get up, walk, her hands are always stiff, we are fed up in life, we have visited so many temples but there is no improvement

Doctor: Did you show your child to a doctor before? Now the child is three years old, what were you doing all these years?

Mother: No, we do not know what we should do?

Doctor: (examines the child) Yes, the child has a serious problem. You have to do exercise for this child, and give medicines regularly all her life. The child will not improve fully but the problem might reduce.

Father: Oh! Then for our entire life we will have to serve her, feeding the child is also such a difficult task.

Doctor: What is the child’s name?

Mother: Her name is Radha.

Doctor: Give this medicine every day, and the physiotherapist will teach you some exercises that need to be done every day for the child.

Physiotherapist: How are you Radha? (looks at the parents) OK, you should always move the legs and hands, allow the child to move her legs in the water while bathing. The child may not cooperate, but you should continue to do these exercises. Come and show her to me after three months.

Father: When should we do the exercise?

Physiotherapist: Every day morning, and at least 10 times in a day, you should keep doing it throughout the day.

Scene III

( A t home)

Father: (to the mother) What are you doing?

Mother: I am making Radha do her exercise, you go and eat. She is very adamant and is not letting me do her exercise.

Other children: (visit the house) Let Radha play with us kaki (aunty) (sign language)

Mother: No, she cannot play with you, you go and play, let her eat medicines, do exercise and rest, she cannot play or go to school. Go away!

vii. Murali and Revathi’s Story (hearing impairment) – Social Model

One day a CBR worker from an NGO identifies two children, Murali and Revathi with hearing impairment in Siddapura village. The CBR worker discusses with the parents about the children’s future. Along with the parents, the CBR worker approaches and requests the school headmaster for admitting these children to the local school. The headmaster shares his concern that the school does not have any qualified/equipped teachers to teach these children. The CBR worker sends a sign language teacher who regularly visits the school. After completion of education the children join a computer training centre. The centre is equipped to train persons with hearing impairment. Murali and Revathi successfully complete the training and they get jobs in a mutlinational company.

Script for skit - Murali and Revathi’s Story (hearing impairment) – Social Model

Scene I

( A t home)

CBR Worker: I am from an NGO, please give me your details as I have come to do a survey.

Father: I live with my wife and two children. My children do not go to school, because they cannot hear and speak. Murali is 8 years and Revathi is 12 years old.

CBR Worker: We should enrol your children in a school. Why have you not been sending them to school so far? We will speak to the school authorities, and help them to go to school. Every child should go to school, and develop equally like other children. The government provides facilities for children with disabilities through the programme called Sarva Siksha Abhiyan (SSA).

Scene II

( A t the school)

CBR Worker: Good morning, sir!

Headmaster: Good morning!

CBR Worker: We work with children with disabilities. This man is Basavaraj, and his children have speech and hearing impairment. It is always essential that children go to school and develop fully. So we request you to kindly admit these children to your school.

Headmaster: But these children are disabled! We are not trained to provide education to children with such disabilities.

CBR W orker: We have volunteers, they will train your teacher in sign language. We will also send a sign language interpreter to regularly visit your school and support the teachers and these children

Headmaster: OK if you will be sending a sign language interpreter, then we are willing to enrol these children.

Scene III

( A fter 6 years , at the multinational company)

CBR W orker: (Introduces the two children) I saw your advertisement in the newspaper, and so have brought Murali and Revathi for a job here. They can speak/communicate through sign language and they have very good skills in operating computers.

Multinational Company O wner: We provide employment opportunities to the persons with hearing and speech impairment. We want persons with disabilities to improve in life. We are happy that you have brought them here. If they perform well, we will offer them a promotion too.

viii. Kariappa’s Story (orthopaedic disability) – Rights-Based Approach

Kariappa, a young man who works in an iron factory, met with an accident while at work and lost his right hand. The employer terminated his job. Kariappa began to feel sad and miserable sitting at home. One day he came to know about a disabled persons organisation (DPO) called Sabalikaran and requested its help. The leaders of the DPO went and met the employer with a request to re-employ Kariappa but the employer refused. Then the DPO and Kariappa filed a case against the employer with the Commissioner for Disabilities. The Commissioner for persons with disabilities summoned the employer and explained to him about the PWD Act 1996, Sec. 47 (1) which states that if any person becomes disabled while at work, he/she cannot be removed from the job and from the grade at which he/she employed. The employer understood and re-employed Kariappa. Kariappa also became a member of the DPO and began to work for the rights of other persons with disabilities.

Script for skit - Kariappa’s Story (orthopaedic disability) – Rights-Based Approach

Scene I

( A t the employers office)

Kariappa: Sir! I have lost my hand at your factory. I have incurred a huge hospital bill. Kindly help me in settling it. Also please assign some other work that I can do with one hand.

Employer: Please go back home. Don’t come back to work from tomorrow. I have nothing to offer you.

Scene II

( A t home)

Kariappa’s Father: What happened, my son?

Kariappa: I approached the owner of the factory where I had been employed for the past 10 years but he has sent me back home and has refused to pay the expenses incurred at the hospital.

Father: Let us go to the organisation working for the rights of the persons with disabilities.

Kariappa goes and complains to the DPO. The DPO representative approaches the factory owner along with Kariappa to talk to the employer.

Scene III

( A t the factory with the owner)

DPO representative: What happened, why are you not letting Kariappa work in your factory? It is not correct that you are refusing to support him after he met with an accident at your factory. He is an old employee too.

Employer: He has lost one hand, what will he do? How can we keep him for work now? The machine he operated requires accuracy and he needs to use both his hands.

DPO representative: He has lost his hand while working for you, so you have to take the responsibility.

Employer: Now he is disabled, he cannot work, I will not take him back – please take him away!

DPO representative: (consol e s Kariappa) OK, let us go to the organisation in Bangalore; we will fight and get back your job.

Scene IV

( A t the Office of the Commissioner for disability)

CBR worker: (introduces Kariappa, and briefs about his difficulty)

Commissioner for Persons with Disabilities: OK, let us meet the employer and negotiate; otherwise, we could challenge them legally and get justice.

Scene V

(The Commissioner for Person s with Disabilities summons the Employer again along with Kariappa and CBR worker)

CBR Worker: What compensation are you going to give?

Employer: We cannot give anything as he is unable to work.

Commissioner for Persons with Disabilities: Do you know the rule? There are policies regarding disability. You cannot remove the worker because he lost his hand. You should pay for his treatment, which you have not done, and you have also terminated his services. Now you have to take him back, otherwise we will file a case in the court and take legal action against you.

Employer: I am not aware of such rules. I will re-employ him in that case

ix. Rita’s Story (intellectual disability) – Charity Model

Rita is a young girl with mild intellectual disability. Her disability is not accepted by the family and community. Her mother has sympathy but is tired due to negative comments and stigma. Rita helps her mother in household work, feeding cattle, etc, Though Rita is not a burden on the family, due to stigma and myths attached with her disability, Rita’s family decided to send her to a residential home/school as she would become a hurdle for the marriage of her two elder sisters and brother. At the residential school Rita is given some work according to her capacity. After being admitted to the residential school Rita never comes home. She works hard to contribute each penny being spent on her without complaining. All her basic needs such as food, shelter and clothing are being fulfilled by the school. Her family comes to meet her once in 2/3 months but she will have to spend her entire life at the institution, away from her family. She is never asked what she would like to do or become.

x. Seema’s Story ( visual impairment) – Medical Model

Sima is born with paediatric cataract in both her eyes in a remote area of Kutch district (Gujarat, India), where no medical services are available. Her parents work as wage labourers, Sima’s problem was diagnosed at the age of 2 years, she was operated at the age of 2 ½ years. As she is not able to see properly, after functional and clinical assessment, she has been diagnosed as a person with low vision. She is not able to read the regular print but is able to read large fonts after magnification. She has not got admission in the local village school as the teacher thinks that she will not be able to study in the regular classrooms with other children. She is admitted to a special school at Palanpur so that she can study with other students like her. She has got the benefits related to disability but has never had the chance to showcase her abilities in her village. After the Std.10th exam she is admitted for vocational training at a centre to become a telephone operator.

xi. Sejal’s Story (locomotor disability) – Social Model

Sejal is a young and enthusiastic girl of 24 years. She has locomotor disability and is unable to walk as both her legs are paralysed due to polio. As the school is sensitised and made accessible, she is easily admitted to the local village school. She procures assistive devices and benefits from the nearby rehabilitation centre with the support of her teacher who has undergone a foundation course in disability management. Sejal performs well at her school and motivates other girls with and without disabilities. She even represents her school in district and state-level singing competitions. Gradually, she and her mother begin to be invited for parents-teachers association (School Management Committee) meetings. Besides her schooling, she decides to learn computers from a local vocational training centre. At present she is studying in college pursuing B.Com and is giving tuition to primary school students.

xii. Sheela’s Story (cerebral palsy) – Right-Based Model

Sheela is a young girl with cerebral palsy, and lives in a remote village of Banaskantha district in Gujarat, India. Earlier she did not have control over her neck movements and was not able to speak properly. At the age of five years she was identified by the Community-Based Rehabilitation (CBR) worker who linked her with speech and occupational therapists. Her parents were also made aware of her disability and about ways to support her in different activities. Gradually, her speech improved and she also gained sufficient control over her neck muscles. Sheela was then admitted to the local primary school and provided extra support by the teachers in the school for her education. She was provided with assistive devices and accessible educational material from the school itself. From the 10th standard she started attending block-level meetings of persons with disabilities organised by the local disabled persons organisation (DPO). She also attends various seminars related to disability: Acts, leadership training through the Banaskantha district’s DPO. Currently, she is pursuing her graduation and has become an active member of the DPO. She guides and supports other persons with disabilities for getting admitted to the village school and access social security schemes etc. She is also actively working with the local civil society organisations to motivate other persons with disabilities to access their right to vote.

xiii. Sheeba’s Story (cerebral palsy) – Charity Model

Sheeba is an 11-year-old girl affected by cerebral palsy (CP). She lives in a slum at Lucknow in Uttar Pradesh, India, with her mother, grandmother and younger sister. Sheeba’s mother is the sole earning member in the family and she works as a domestic help in nearby affluent households. She often falls ill and hence several times the family has to go hungry. Often, other people come to distribute food and other things like blankets in the slum. This family readily takes it/is as they are not able to buy warm clothes in winter. Once a social worker came to know about its situation and began to provide it with food and other items on a regular basis. The family survives partly on the charity given in cash and kind by the social worker.

xiv. Ria’s Story (cerebral palsy) – Medical Model

Ria is a 13-old-girl and is affected by CP. She is an only child of her parents. Ria’s family was not able to diagnose her disability. It approached many doctors for several years. Later the doctors advised it that Ria should wear calipers and these were provided by the hospital. As the calipers were uncomfortable Ria often cried and insisted that they be removed. Ria was not able to speak and was not mobile, so her family did not send her to school. Then Ria’s uncle, who is a teacher in the local primary school, encouraged the family to send her to school. But when it went to admit her to a nearby school she was refused admission. So her uncle found a special school and admitted her to it. In this school there are many children like Ria and no one teases her. She has been provided with a wheelchair by the school and is also provided the support of a physiotherapist. With the help of the wheelchair she is able to move around the house and inside the school. But she is not able to move outside the house as the roads are not compatible for the wheelchair.

xv. Shyam’s Story (visual impairment) – Social Model

Shyam is a 14-year-old boy with visual impairment and lives with his parents and brother. He goes to school with his brother where initially he had to face a lot of difficulties. But since his parents became members of the School Management Committee (SMC) they shared his difficulties with the school authorities. Since then a ramp has been built with guiding strips to facilitate his mobility inside the school. Now Shyam is fairly mobile and is able to commute to and from the school. The teachers speak aloud and explain what they teach in the class. A special educator has been assigned to the school and all the teachers began to learn Braille so that they could teach other visually impaired children. His friends and classmates do not tease him in the school. Shyam has begun to learn computers and wants to become a computer engineer.

xvi. Ramesh’s Story (orthopaedic disability) – Rights-Based Model

Ramesh is a 25-year-old young man who lost his leg in an accident four years ago. After the accident he stayed at home for one year and did not like to come out of the house. One day he met a CBR worker who encouraged him to participate in the activities and meetings of a disabled persons organisation (DPO). Slowly he began to participate in the meetings of the DPO and take interest in its activities and enjoyed solving the problems faced by other persons with disabilities. He has become an active member of the DPO. He has got his disability certificate and also his pension. Now he has begun to disseminate information about schemes for persons with disabilities to other members of the DPO. One day he came to know about a girl called Zoya who was affected by locomotor disability. Even though she is qualified, her application for the job of a teacher at the local school was not accepted on the pretext that she would not be able to look after the rowdy children. This incident was brought to Ramesh’s notice and he approached the principal. But the principal refused to listen to him. Ramesh then approached the panchayat and explained the provision of 3 % reservation for persons with disabilities. The principal was forced to accept Zoya’s application. Now Zoya is employed as a teacher at the primary school and she encourages other children with disabilities in their studies. She is also an active member of the DPO.

xvii. Laxmi’s Story (visual impairment) – Charity Model

Laxmi is a young girl with visual impairment born into a poor family that resides in an interior village in Sabarkantha district of Gujarat. The family is used to receiving alms from the neighbours and would often be seen begging at the nearby temple. As Laxmi grew up, the parents found it difficult to keep her at home as someone had to stay back to look after her. So she was admitted to a residential school for the visually impaired girls at Ahmedabad. When she was old enough, the residential institution where she grew up arrange for her to get married to a visually impaired boy. The couple now survives on alms given by the nearby temple and lives in a small flat donated by a philanthropist.

xviii. Darshana’s Story (hearing impairment) – Medical Model

Darshana is a girl with hearing impairment. With the support of relatives and others in the community she was operated on and a hearing aid was provided. The parents felt that now their problem was solved and expected that she would now begin to speak. To their dismay this did not happen as speech therapists were not available in the region to train her. The teachers in the school were also not able to communicate with Darshana and the children in the school often teased her. Darshana was found sitting in a corner of the classroom in the school.

xix. Shailesh’s story (visual impairment) – Social Model

One day a community-based rehabilitator (CBR) worker from an NGO saw Shailesh, a young boy with visual impairment, walking without slippers on the road, accompanied by a man. The CBR worker called out to the man and began to speak to him. She found out that he was a teacher in the local primary school and Shailesh was his son who accompanied his father to school. She found that the boy was intelligent and with support he would be able to study in the same school. With the aid of Braille books, Shailesh began to study and even participate in various competitions at the school. With the support of his father, the CBR worker, teachers and friends, he was able to complete his schooling and graduate as a qualified teacher. Today he is employed as a teacher in a government primary school and supports his family.

xx. Sushila’s Story’s (visual impairment) – Rights-Based Model

Sushila lost her eyesight in childhood as a result of high fever. She was sent to a residential school for the visually impaired but as she was not comfortable there she was admitted to the local primary school. With the support of the local NGO, CBR worker, parents, teachers and friends she was able to study well. While in school she developed partial deafness. As Sushila was a bright child she enthusiastically participated in the different activities conducted in the school: sports, cultural events and various inter-school competitions. She completed her school education and as she was keen on learning computers she went on to receive professional training. Sushila also takes interest in supporting other women and persons with disabilities in completing their education and address the issues faced by them. She is a member of a local association of persons with disabilities. After completing her education, she faced problems in getting employment. With the support of the local disabled persons association she filed a case under the PWD Act 1995 and was finally recruited in a public sector enterprise. She continues to hold office in the disabled persons association and support young enthusiastic persons with disabilities.

xxi. Ram’s Story (orthopaedic disability) – Charity Model

Ram is a 40-year-old truck driver and resides in a village called Rampur in Uttar Pradesh. He is married and has two children. His family is very caring and he is respected by the community. Last year he met with an accident while driving, as a result of which his left leg was injured and it had to be amputated. He is now unable to drive the truck and has lost his means of livelihood. His family has to struggle to meet its basic needs. His wife knows tailoring but has never used her skills to earn a livelihood. She tries to explore the possibilities but is not confident. Ram began to sit near the temple as he was very depressed. Soon people began to take pity on him and gave him money and other things in kind from which he could partially meet the needs of his family. Slowly, this became a habit and a means of living. His wife has become complacent and has begun to depend on this income for survival. Whenever there is a community function the leftovers are sent to his house.

xxii. Ram’s Story (orthopaedic disability) – Medical Model

After a few months an NGO worker passing by the temple sees Ram and speaks to him about his condition. She advises him to visit the State hospital where he can get surgical treatment and some support for prosthesis and orthotics. With this support he would be able to start work again and regain his mobility. Ram visits the hospital with his wife and the doctor advises him a surgery after which he would need to use an artificial limb. With the support of a Trust a surgery was conducted and Ram was provided with an artificial limb. He began to feel hopeful and went to meet his ex-employer for a job. The employer was very rude to him and refused to take him back even though Ram was willing to do anything he would let him do. He also tried elsewhere but the response was negative. He once again began to feel depressed and remained confined to home most of the time. He stopped using the artificial limb on a regular basis and hence when he tried to use it once in a while for going out, it causes him a lot of discomfort due to recurring sores.

xxiii. Ram’s Story (orthopaedic disability) – Social Model

After several months when the CBR worker visits him she is happy to see that Ram has undergone the surgery and has also received an artificial limb. When she inquires about his livelihood she finds that he is unable to engage himself in gainful employment, is still at home and is not even using the artificial limb. She realises that it is not because he does not want to work, but due to insensitivity of the employers. The CBR worker puts him in touch with a rehabilitation centre that provides him support for mobility training. This agency also speaks to his ex-employer and convinces him to provide Ram with an alternative position, at par with his previous salary package. The employer is initially reluctant but agrees to keep him on a temporary basis. Gradually, Ram begins to take initiative in orienting new drivers on safe driving. The employer is also pleased with Ram’s performance and slowly become more open to employ other persons with disabilities. Ram has applied and got a disability certificate and also becomes aware about concessions and loans available for the disabled at low interest rate. The CBR worker facilitates the obtaining of a loan and Ram begins to avail a travel pass and applies for a loan.

xxiv. Ram’s Story (orthopaedic disability) – Rights-Based Model

Ram begins to meet other persons with disabilities and together they discuss certain entitlements that they could avail. The group realises that if they assert their rights collectively, much could be achieved. They discuss various options and based on the experience of the group members and the local needs, they decide to buy a few tempos/ auto rickshaws and lend them for services and delivery of goods and supplies. Initially, they face a number of challenges for registration, purchase, etc. During this process they meet many stakeholders and have dialogue with them. They have to convince them about their efficiency and performance, more so because they were a group of persons with disabilities. A few years later they become a role model and a source of inspiration for other such groups in the neighbouring region. This group also advocates the rights of persons with disabilities in making the built environment barrier free, making the rickshaw meter audio enabled, etc. The group has also has begun to take up other social issues of the community.

xxv. Kumar’s Story (quadriplegia) – Charity Model

Kumar is the eldest son of Nagaraj and Nanjamma who live in Kanakapura Taluka of Bangalore South district. Kumar has two younger sisters and a younger brother. The parents’ major source of income is through bangle selling in the rural areas and the family is managing with the income received through this petty business. As Kumar grows up he regularly attends school. During this period, along with his parents he participates in a car festival in a nearby village. The family travels to the festival by an auto (3-wheeler vehicle), which unfortunately meets with a road accident. Due to this accident Kumar’s spinal cord is damaged and his lower limbs are paralysed. Medical treatment / regular physiotherapy has not helped him to recover normalcy. He has become dependent on others, as he always has to remain in a lying down position in the bed. He has developed bed sores, and due to loss of bowel and bladder movement, he has been advised to use a catheter to prevent urine infection. Even though the parents are attending to his medical and personal needs as far as possible, Kumar is frustrated at being unable to do anything and has even tried to commit suicide two or three times.

xxvi. Kumar’s Story (quadriplegia) – Medical Model

Kumar has been identified by a Christian Missionary, Kanakapura, who has come forward to provide residential care, and necessary nursing assistance to him on a day-to-day basis. But for this Kumar has to travel down to St. John’s Medical College Hospital at Bangalore once in every three days to replace the catheter. He is not able to use the public transport system as it is not accessible and he has to hire a vehicle, which is very expensive. This has further deteriorated the financial condition of the family.

xxvii. Kumar’s Story (quadriplegia) – Social Model

This situation continues for a few years until he is identified by a CBR project Sourabha working in the Kanakapura taluka. Through the CBR project he has begun to receive support for physiotherapy treatment through its technical team and a vehicle is being sent to enable him to visit St. John’s Medical College Hospital at Bangalore regularly. This has given him new insight into life, and he starts using these facilities. He has been provided with a foldable wheelchair and training on daily life skills in managing his disability and vocational training to become independent.

At this point of time, active members of the local DPO cum-self-help group of Sourabha CBR project approaches his family members and influences them to become a member. Since Kumar is unable to take part in the SHG meetings, first his younger sister represents him. Later on when he starts using the wheelchair, his parents assist him in participating in these meetings.

xxviii. Kumar’s Story (quadriplegia) – Rights-Based Model

Once Kumar becomes independent he is nominated as a member in the federation of the SHGs/DPO supported by Sourabh CBR Project. He contests the general election of the federation, and becomes the President. The federation initiates a day care centre for children with severe disabilities and starts a computer training unit. Kumar’s personal experience is aired by the All India Radio Station.

In his interview, Kumar shares the challenges faced and how he has overcome them. Many people with similar disabilities telephone and share their feelings with him. Many others also assured him of support. One of the listeners supports him with a telephone booth, another installs the telephone. Once he starts his own telephone booth his financial condition improves.

Through Kumar’s efforts, income generating activities are being initiated and now the federation offers employment to persons with disabilities. Kumar has arranged for his sister’s marriage and has also assisted his brother in setting up a petty shop. He has even applied for a house under the Indira Awas Yojana and has not only been able to build a house for himself, but also secured similar benefits for some of the members of the federation.

Consolidation of Responses on the Models/ Approaches

Responses to Cases Classified Based on the Models/Approaches

CHARITY MODEL

Considered as an obstacle/hurdle in sibling’s marriage

MEDICAL MODEL

SOCIAL MODEL

Children with disabilities get a chance to go to regular school and stay with the family

RIGHTS-BASED MODEL / APPROACH

Persons with disabilities able to hold dialogue /negotiate with stakeholders

CHARITY MODEL

Parents especially the mother burdened and helpless

MEDICAL MODEL

Provided with aids and appliances

SOCIAL MODEL

RIGHTS-BASED MODEL / APPROACH

Persons with disabilities play a motivational role to other persons with disabilities and provide an example to society

CHARITY MODEL

Not all persons with disabilities can be accommodated at the ashram/residential institutions

MEDICAL MODEL

SOCIAL MODEL

RIGHTS-BASED MODEL / APPROACH

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3.3 PROBLEM ANALYSIS OF SOCIAL EXCLUSION

3.3.1 How to do Problem Analysis (Reading)

This tool is for identifying the cause and effect relationship of any local problem. This could be used at any stage in the project cycle. This could also be used as a complementary technique to Stakeholder Analysis. The main purpose of this exercise is to understand the underlying development causes of the issues that continue to exclude certain sections of the population and the impact they have on their lives. This exercise is usually done in a workshop setting. This technique is best used in small groups of 6-8 persons and helps in building stakeholder consensus. This technique could be used with a variety of stakeholders and in this way consensus could be built on the issues to be addressed, the potential constraints and challenges in addressing the issues or problems, the resources required to address the problems and build meaningful relationship among them.

To begin with, the main/ focal problem is identified and placed in the centre. It is important that the participants discuss and pinpoint one focal problem. The attempt must be to identify an existing problem and not a possible, imaginary or future one. A problem is not the absence of a solution but an existing negative state. For example, the problem could be that the transport department is not ordering low floor buses and not that low-floor buses are not available. Another example could be, the paucity of sign language interpreters and not that there are no persons with hearing impairment in the community. While conducting the exercise, if more than one focal problem is articulated by the group, then temporarily begin with one, and park the others on the side and revisit them at a later stage. Avoid voting to arrive at a consensus for finalising the focal problem for discussion.

The next step is to list the direct causes related to the focal problem finalised by the group in parallel in a row below the focal problem as it is for the roots of a tree. Each problem is to be written on a separate card so that it could be moved, when required, as many possible causes need to be identified and listed here. The next step is to identify the implications or consequences/ effects of these causes and place them on top of the focal problem as the branches, leaves and fruits of a tree. These could be further discussed and the causes and effects relationships are deepened and modified.

Example 1

Focal Problem - Mud on one of the participant’s trousers

  1. Bad condition of road - Panchayat or municipality not working properly - Municipality used the grant received for its own benefit

  2. Residents of the locality are apathetic

Example 2

Focal Problem – Poverty

  1. Forced to sell assets (land and house) for survival - Unable to do treatment - Become malnourished and ill - Become poor and not able to have enough food - Not able to get jobs - Not able to study further

Example 3

Focal Problem - Students with disabilities are not able to appear in secondary level board examination

Higher Secondary Education System does not have arrangements for conducting examination of students with disabilities - Absence of proper rules for examination of students with disabilities - Authorities of School Education Board not sensitive towards disability - Other eminent persons involved in the education system are not sensitive towards disability

It is important to stress that working on effect would not change the situation unless they change the root cause. For situational analysis it is important to go up to the root cause, as it would be easier for the group to decide how it should strategise and address the problem.

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3.3.2 Session Plan and Facilitation Notes – Problem Analysis of Social Exclusion

Time: 6 hours (This exercise to be done with suitable breaks)

Method: Group discussion and enactment of skit based on cases and touch-and-feel method

Materials: Flipcharts, markers, white tape, prints of cases in accessible formats, regular print, large print, Braille and picture story board and case study recorded in the form of talk theatre in the local language and rectangular cards, Braille slate and stylus, Reading on How to do Problem A nalysis and any one of the cases from Handout.

Objectives:

Process:

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Facilitator ’s Note:

The following explanations may be given:

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3.3.3 Case Studies for Problem Analysis (Handout)

xxix. Asha’s Story (visual impairment)

Asha is a 20-year-old visually impaired girl who was born in a small village in West Bengal, India. Her father Dinunath and mother Rasila work in the fields as farm labourers and brother Raju studies in the local primary school.

When she was five years old Asha was affected with a condition described by doctors as ‘d ry eyes’ (xerophthalmia, or nutritional blindness) which is the most common cause of childhood blindness. This disease is caused due to vitamin A deficiency. Sources of Vitamin A are available from fruits, vegetables, milk, meat, and egg. Due to poverty, her parents were not able to provide her nutritious and healthy food. As the village is remotely located, the government para-health workers do not reach out to such households for counselling and health advice. Without such support early detection and identification is also not possible.

After Asha contracted this disease, whenever she would accompany her parents to the agricultural fields or for a social function, people in the village would look at her strangely and laugh at her. Other children and neighbours keep away from Asha and their house. Once Asha asked her mother, “Why doesn’t anybody make friends with me?” Her mother replied, “Because you are cursed.” Her parents thought that blindness was sent to a family as a punishment for their sins, perhaps committed in their past lives and so people look down upon them.

Asha’s brother, Raju, goes to school. On several occasions Asha asked her mother, “Ma, why can’t I also go to school?” To which her mother would reply angrily, “Because we do not have so much money. Whatever we have, we have to spend on Raju. In our old age Raju will be our support. What can you do? Anyway, no school will admit you. And even if they do, who will take you to the school and bring you back and what about your books and clothes?” These remarks would make Asha very sad.

At times, she would touch and feel Raju’s books wanting to explore them. This made her father very uncomfortable and he would scold her, “Leave that book! Who will get married to a blind girl anyway! Even if you learn to read and write, it will be impossible.”

As Asha grew older her mobility got more restricted. Her parents instructed her not to step out of the house on her own. She was unable to participate in any village events. When she expressed a wish to go and participate in the annual village mela, a grand event, her parents said irritably, “Why should we take you? What will you go and see there? It is so crowded there.”

No one included her in the village gatherings and functions. Asha was totally ignored and confined to her house. She remained alone, sad and silent yearning to go to school and study like her brother, play with other children and attend village functions.

One day, a community-based rehabilitation (CBR) worker from an NGO approached her parents and suggested to them to admit her to school under the government’s Sarva Siksha Abhiyan programme. Asha’s parents did not know anything about the programme and were reluctant. Asha herself felt unsure and hesitant. It was only after several visits and meetings by the CBR worker that her parents agreed to send her to the local primary school.

Asha began to attend school along with other children from the village. At the school, she faced a tough time as she was older than her other classmates and the teacher made her sit in one corner of the classroom with a Braille kit. There was no guidance provided to her on the use of Braille as the teacher did not know the Braille script. She had to rely mainly on whatever the teachers and other students spoke aloud. At school during the recess, the children, particularly the boys, would make fun of her and tease her. Some would pull her hair and some would try to pull away her school bag. With great difficulty Asha managed to study with support from her brother and other friends in the village who would read aloud while they were studying for their own exams so that she could listen to them.

Finally, the day came when Asha was ready to sit for her Std. X exams. On the first day when she reached the school to write her exam, she was not provided with a writer and hence she was unable to write her exam. On the second day, a junior student volunteered to write her exam and she was able to appear for the remaining subjects. On the last day she had to appear for the music exam as she had opted for this instead of mathematics. The school conducting the exam had not received any instruction for offering this option to her. Hence, on the last day too, Asha was unable to complete her exam.

When the results for the school were declared a few months later, Asha had not been able to clear Std. Xth. Even though she had scored well in most of the exams, she was marked absent for the first and the last exams that she was unable to appear for.

Asha was shattered as she had many hopes and aspirations that she would have liked to fulfil after passing her Std. Xth exams. Her parents and brother were also at a loss and wondered why they ever sent her to school.

With the support of the community-based rehabilitation (CBR) worker, Asha was finally able to complete her education. She gained access to learning material in Braille. Asha aspired to support her family by becoming economically independent and qualified to become a teacher. Even though she was qualified, it became almost impossible for her to get a job. Along with Asha, a group of persons with visual impairment have together filed a petition in the court for employing persons with disabilities under the 3 per cent reservation as stipulated under the PWD Act 1995. But till date they all await the final judgment and are feeling despondent.

Text of talk theatre of Asha’s Story (visual impairment)

I am Asha. Now I am 20 years old. I live with my parents and younger brother in a small village. Our village is very far from the city. Doctors do not visit the health centre of our village. Villagers do not get necessary medicines and no information on nutrition, health and hygiene is available for our community. When I was 5 years old, I began to face problems with my vision. Gradually, the condition deteriorated and I completely lost my vision. I came to know that my vision was lost due to lack of intake of nutritious food, like egg, milk, meat, fruits and vegetables.

Do you know that? I wanted to become independent like others through higher education and employment? With great difficulty I completed my education but am unable to find employment due to my disability.

I still recall my childhood days…

One day I asked my mother, “Mom, why do you not send me to school?”

Asha’s mother: “We don’t have enough money to spend for your education. The little money that we have, we need it for the education of your brother Raju, because in our old age he will take care of us. You are not able to see and will not be able to do anything. By the way, no school will admit you and, even if they admit you, who will take you to school and drop you back home?”

That day I was very upset…

Once I was holding on to my brother Raju’s books, trying to know and feel what would be written in these books. At that time, my father came and scolded me,

Asha’s father: “Why did you take Raju’s books? I warn you not to touch his books anymore!”

Then I began to think that I would be a burden on others for my entire life. Oh! What a life I am living! I began to hate myself.

Nobody wanted to speak to me in my neighbourhood. Do you know why? That was because I am not able to see at all. My parents also thought that I was a curse to the family.

I can remember a few more incidents which influenced my parents to think that my disability was due to their sins committed in past lives.

Once our neighbour visited us and began to advise my mother about me

Ramala Aunty (Neighbour): Asha’s mother…. Are you there in the house?

Asha’s mother: Yes, I am here, Ramaladi…

Ramala Aunty (Neighbour): Your daughter is growing older now. Moreover, she is not able to see. So don’t let her go out on her own. If anything happens to her, then what will you do? It’s not your fault… everything is your fate… We all know you and your family, but all this is due to your past sins….

As I was growing, my movements were restricted. I was not allowed to go outside….

Every year in April, a big fair is organised in our village… Once when my parents were going to the fair with Raju I asked my father if I could also go with them. But my father sharply replied,

Asha’s father: What will you do in the fair? You can’t see anything… there will be a huge crowd in the fair… who will look after you in that crowd?

Despite loneliness, neglect and rejection, one day I saw a ray of hope when Shantidi (who worked in an NGO) came to our house

Shanti Manna (CBR Worker): Is there anyone in the house?

Asha’s mother: Who is there? Raju, open the door and see who is calling?

Shanti Manna (CBR Worker): My name is Shanti. Sister, can you come outside for a while?

Asha’s mother: Who are you? From where have you come?

Shanti Manna (CBR Worker): I have come from a non-government organisation (sanstha)….

Asha’s mother: From where?

Shanti Manna (CBR Worker): Sister, we work with children with disabilities… with those children who cannot see, cannot hear and speak, who have difficulties in moving around and with those who have retarded development and are not like other children of his/her age.

Asha’s mother: Just a moment… I am bringing the mat…please have a seat…What is your name?

Shanti Manna (CBR Worker): I am Shanti Manna…Do you and your husband work in the fields?

Asha’s mother: Yes. He is our son Raju… Raju, please come here… He goes to school… Raju, please show your books to Shanti aunty…

Shanti Manna (CBR Worker): You also have a daughter?

Asha’s mother: Yes, she is not able to see since childhood

Shanti Manna (CBR Worker): That’s not a problem…Do you send her to school with Raju?

Asha’s mother: She is blind. She cannot read and write… She is useless and nothing can be done about her….

Shanti Manna (CBR Worker): As a mother how can you say something like this? She can also continue education like other children and in the future it may happen that she may look after all of you. Here she is…please come here my child…What is your name?

Asha: My name is Asha.

Shanti Manna (CBR Worker): Oh! What a nice name. Don’t you want to go to school and learn?

Asha: Yes, I too want to go to school. Many times I have thought that I could also learn many things like my brother…

Shanti Manna (CBR Worker): Have you heard about the government programme called Sarva Siksha Abhiyan…through this project disabled and non-disabled children together get opportunity to study in the village school free of cost. Besides this, especially for disabled children, there are special arrangements / facilities in each school….

After several visits by Shantidi and discussions with my parents, at last I began to go to school. One teacher from Shantidi’s organisation used to come to our house to teach me Braille (reading – writing)…

I started going to school with my brother. But the school-going days were not very nice and happy. The school teachers did not know Braille. I was asked to sit in a corner of the classroom with Braille slate, stylus and other materials. When the teachers would teach in class, I used to listen very carefully and try to understand and learn the content.

During the recess/break, my classmates used to humiliate me in several ways; try to snatch my bag and pull my hair. I used to prepare my lessons with a lot of difficulty by listening to the lessons by my brother and some of the friends in my village. In this way I continued my studies till the 10th standard and appeared for the Board examination.

On the first day of the Board examination, I found that at the examination centre there was no arrangement for a scribe/writer for me and the teachers didn’t know anything about it. So despite all the preparations, I could not appear for the first exam. From the second day onwards, a student of a lower class helped me to write the rest of the papers. I had chosen music as an optional paper. But no order mentioning this optional subject was communicated to the examination centre by the Secondary Board of School Education. So, the examination authority didn’t allow me to appear for my last exam.

When the results came, I found that I had scored good marks in all the subjects but as I could not appear for the first and last exams, I had been disqualified in the Board examination. All my efforts were in vain. I realised that my dream of becoming independent would never come true. Now my parents thought that it would have been better if they had not allowed me to enrol in school and continue education.

With the support of the community-based rehabilitation (CBR) worker, I was finally able to complete my education. I was able to gain access to learning material in Braille. I wished to support my family by becoming economically independent and so studied hard to become a qualified teacher. Even though I was qualified it became almost impossible to get a job. Together with a group of persons with visual impairment we have filed a petition in the court for fulfilling 3% reservation for employing persons with disabilities as stipulated under the PWD Act 1995. But till date we all still awaiting the final judgment by the court and are feeling despondent.

Picture Story Board of Asha’s Story – Problem Analysis for Social Exclusion

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Asha's story, illustration 1 Figure 1: ASHA IS A 20-YEAR-OLD GIRL WITH VISUAL IMPAIRMENT

Asha's story, illustration 2 Figure 2: HER FATHER AND MOTHER RASILA WORK IN THE FIELDS. AND HER BROTHER RAJU STUDIES IN THE LOCAL SCHOOL Figure 3: ASHA IS AFFECTED BY DRY EYES. THIS CONDITION IS CAUSED DUE TO VITAMIN A DEFICIENCY

Asha's story, illustration 4 Figure 4: AS THE VILLAGE IS REMOTELY LOCATED THE GOVERNMENT PARA HEALTH WORKERS DO NOT VISIT IT

Asha's story, illustration 5 Figure 5:: THE VILLAGERS WOULD LOOK AT ASHA STRANGELY AND LAUGH AT HER. Figure 6: HER MOTHER REPLIES, “BECAUSE YOU ARE CURSED”.

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Asha's story, illustration 7 Figure 7: IN OUR OLD AGE RAJU WILL BE OUR SUPPORT. ANYWAYS, NO SCHOOL WILL ADMIT YOU.

Asha's story, illustration 8 Figure 8: AT TIMES SHE TOUCHES AND FEELS RAJU’S BOOKS WANTING TO EXPLORE THEM. Figure 9: AS ASHA GROWS OLDER, HER MOBILITY BECOMES MORE RESTRICTED Figure 10: ASHA IS TOTALLY IGNORED AND CONFINED TO HER HOUSE.

Asha's story, illustration 11 Figure 11: A CBR WORKER APPROACHES ASHA’S PARENTS AND SUGGESTSTO ADMIT HER TO SCHOOL.

Asha's story, illustration 12 Figure 12: ASHA’S PARENTS DECIDE TO LET HER CONTINUE STUDIES

Asha's story, illustration 13 Figure 13: ASHA HAS TO SIT IN A CORNER IN THE CLASSROOM

Asha's story, illustration 14 Figure 14: BRAILLE IS NEW TO HER AND SHE DOESN’T KNOW HOW TO USE IT

Asha's story, illustration 15 Figure 15: THE TEACHER DOESN’T KNOW ABOUT BRAILLE EITHER

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Asha's story, illustration 16 Figure 16: THE BOYS MAKE FUN OF HER AND TEASE HER.

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Asha's story, illustration 17 Figure 17: ASHA MANAGES TO STUDY WITH SUPPORT FROM HER BROTHER.

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Asha's story, illustration 18 Figure 18: SHE IS NOT PROVIDED WITH A WRITER AND HENCESHE IS NOT ABLE TO SIT FOR HER EXAM.

Asha's story, illustration 19 Figure 19: A JUNIOR STUDENT VOLUNTEERS TO WRITE HER EXAM.

Asha's story, illustration 20 Figure 20: ON THE LAST DAY TOO, ASHA IS NOT ABLE TO PERFORM HER MUSIC EXAM.

Asha's story, illustration 21 Figure 21: ASHA IS NOT ABLE TO CLEAR STD. X.

Asha's story, illustration 22 Figure 22: ASHA IS SHATTERED AS SHE HAD MANY HOPES AND ASPIRATIONS

Asha's story, illustration 23 Figure 23: HER PARENTS AND BROTHER ARE ALSO AT A LOSS.

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Asha's story, illustration 24 Figure 24: WITH THE SUPPORT OF THE CBR WORKER ASHA IS ABLE TO COMPLETE HER EDUCATION.

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Asha's story, illustration 25 Figure 25 A GROUP OF PERSON WITH VISUAL IMPAIRMENT HASFILED A PETITION IN THE COURT.

PROBLEM ANALYSIS FLOW CHART ASHA’S STORY–1

Focal problem: Social exclusion of persons with disabilities or marginalisation

CAUSES:

LIMITED ACCESS TO HEALTH SERVICES – Anganwadi & ASHA (health) workers not going to the village – Parents not aware – Limited awareness

NEGATIVE ATTITUDE OF SOCIETY – Disability considered a burden by parents – Superstitious/ beliefs by family – Discrimination between boys and girls – Limited awareness

LIMITED ACCESS TO EDUCATIONAL SERVICES - Low implementation of RTE – Insensitive teachers - Limited time spent by parents for disabled child - Low participation by child with disability

LIMITED ACCESS TO EDUCATIONAL SERVICES– Apathetic School Management/admin – Discrimination by School – Misbehavior by teacher – Low participation by child with disability

LOW ACCESS TO BASIC SERVICES AND AIDS & APPLIANCES– No provision of scribe/ writer hence not able to give exam – Limited availability of aids

LOW ACCESS TO BASIC SERVICES AND AIDS & APPLIANCES – Village located far from school – Limited access to accessible transport

EFFECTS:

Not able to express one’s thoughts and feelings – Despondent / Unsuccessful – Feeling of despair

Low self confidence – Remain closed within 4 walls of the house - Feeling of despair

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PROBLEM ANALYSIS FLOW CHART ASHA’S STORY– 2

Focal problem: Social exclusion of persons with disabilities or marginalisation

CAUSES:

DISCRIMINATION IN THE FAMILY AND COMMUNITY– Karma and sin – Family not supportive – Isolated and confined inside the home – Non acceptance– Not able to get married – Low participation in games/sports

POVERTY – Less income – Limited access to nutritious food

LIMITED ACCESS TO INFORMATION – Limited access to health services – Limited access to resources and schemes – Limited aids and appliances

LIMITED ACCESS TO INFORMATION – Limited access to health services – Limited access to nutritious food

LIMITED BARRIER FREE ENVIRONMENT – No access to education –Limited access to resources and schemes – Limited access to health services - Limited aids and appliances

EFFECTS:

Limited encouragement – Dependent – Helpless

Limited relationship - Less confident – Helpless

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PROBLEM ANALYSIS FLOW CHART ASHA’S STORY– 3

Focal problem: Social exclusion of persons with disabilities or marginalisation

CAUSES:

LIMITED AWARENESS ON DISABILITY – Limited information – Negative approach and attitude of society– Non acceptance by parents – Superstitions – Karma theory –Traditional rituals

LIMITED AWARENESS ON DISABILITY – Limited information – Negative approach and attitude of society– Non acceptance by parents – Limited knowledge on rehabilitation – Limited knowledge of rules

LIMITED ACCESSIBILITY TO BARRIER FREE BUILT ENVIRONMENT – Tribal area/interior region

POVERTY – Illiteracy – Malnutrition

UNEQUAL DISTRIBUTION OF RESOURCES – Limited access to health facilities – Limited early intervention (for disability)

UNEQUAL DISTRIBUTION OF RESOURCES – Limited access to education system (RTE) - Prejudice against children with disability – Limited knowledge of teacher on disability – Unavailability of writer

DISCRIMINATION BECAUSE OF DISABILITY – Low demand of rights by persons with disabilities – Gender discrimination

EFFECTS:

Isolation – Restrictions on mobility /person with disability not allowed to go out – Teasing by friends –– Inferiority complex – Needs and aspiration of persons with disabilities not met – Stress

Isolation – Restrictions on mobility /person with disability not allowed to go out - Not able to get married - Inferiority complex – Needs and aspiration of persons with disabilities not met – Stress

Rejection by parents - Not able to get married – Inferiority complex – Needs and aspiration of persons with disabilities not met – Stress

Rejection by parents - Hesitation – Stress

Persons with disabilities struggle to demand their rights – Hesitation – Stress

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xxx. Chandramathi’s Story (intellectual disability)

Chandramathi is an 18-year-old girl affected with intellectual disability. She lives in Kamatigi village in Bagalakote district of Karnataka, India. Her father Ramappa and mother Annamma work at construction sites as daily wage labourers. Chandramathi has one brother and a younger sister. Her brother, Anjanappa, studies in Std 2nd at a local primary school in the village and younger sister, Rathna, works as an in-house maid.

Chandramathi was 3 years old when her parents noticed that she was not able to speak, walk and eat properly. At times she was not able to recognise her parents and often she would get seizures (fits). When the parents finally noticed that she was not like other children, they approached a health worker in their community to understand about the sickness of their child. The health worker discussed in detail about the family and came to know about its poor economic condition. The mother had no access to nutritious food during pregnancy, had not gone for regular check-ups to the health centre and the children were delivered at home.

The health worker guided the parents to the district hospital as there was no health centre in their village. The district health centre was very far from the village and they had to walk several kilometres as there were no proper roads or facility of transportation. The parents approached the owner of the construction site for financial help and were given only a sum. The parents took the child to Bagalakote district hospital, where the doctor prescribed medicines for managing seizures (fits). He clearly communicated to the parents that their daughter would never be like other children. Chandramathi’s parents were shocked and nervous when they heard this.

Chandramathi remained confined to the house as a recluse and her brother, sister; friends and other children would never play or talk to her as her clothes were always wet and smelt of defecation. When Chandramathi’s parents’ would go out of the house they would lock her inside and the neighbours, children would tease and bully her by throwing things at her from the window and holes in the house. Chandramathi’s parents were afraid to let her out of the house also as she might lose her way or someone might do something shameful to her and it would affect the family’s status. Often, her parents would be cursed by the neighbours that they were undergoing all these troubles as God had punished them for their sins/misdeeds committed in their past lives. The parents would feel sad and dejected after such quarrels with the neighbours and would often beat her up.

One day Chandramathi expressed a wish to accompany her brother to school but her mother scolded and pulled her back saying, You can’t go to school, if you go to school, there is no use. You need to be sent to a special school, but we cannot afford to do so. We have to spend a lot of money for your medicines and have to feed you. You are of no use to us.

One day a community-based rehabilitation (CBR) worker from an NGO got information about Chandramathi from the health worker and visited the family. She discussed with her parents about sending their young girl for vocational training so that the family would have some income and she would be fruitfully occupied. At first the parents did not agree, but after several visits by the CBR worker they agreed.

Then the parents took Chandramathi to the vocational training centre but at first the instructor refused to admit her as she had difficulty in climbing the steps and was wobbly in her movements. She would often roll on the floor instead of walking. The instructor was afraid that she would fall and hurt herself. Later, the CBR worker explained to the instructor about Chandramathi’s condition and also informed her about the Rights of Persons with Disabilities Act. The instructor reluctantly admitted her to the vocational training centre. Here she received vocational training and picked up skills in making baskets, candle making and plastic flower making. During the training too she faced many problems like being spoken to rudely by the instructor, less cooperation from co-mates not being given enough time to learn and complete her task, teasing and so on.

After the training, with the help of the CBR worker, Chandramathi’s parents tried to find a job for her, but unfortunately they were not able to do so as the skills taught by the vocational training institute were outdated and new products were available in the market. Then Chandramathi and her parents tried to apply for a loan so that she could start a small business on her own and sell her products in the local market, but the bank refused to give loan to a girl with mental retardation. Now the family’s status is worse than before as her parents are growing old and are not able to go out and do manual work, prices of essential food items are increasing and they would often remain ill due to paucity of nutritious food. Chandramathi’s younger brother dropped out from the school to earn a living as he was the only one who could do something. The younger sister had run away with someone long back.

One day Chandramathi’s father met Raju, who was a 21-year-old young adult with hearing impairment since birth. He was fortunate enough to go to a school for the hearing impaired and had passed the 10th Std. He had completed one year’s diploma course in computers at an NGO that worked with persons with disabilities. After the training Raju began to look for employment but was refused by several employers as they were not able to understand Raju’s means of communication in sign language, Often the employers said that they were not equipped to hire him and that he should find work in special places where they employed persons with disabilities like him Through Chandramathi’s brother, Raju met the CBR worker who informed him about 3 per cent reservation for persons with disabilities in government jobs under the Persons With Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act 1995 (PWD ACT). Raju decided to apply for work in the local post office but here again when he appeared for an interview the panellists were not able to communicate with him and he was not selected. Both Raju and Chandramathi’s brother are left in despair and are not able to figure out what they could do to overcome their family’s situation from abject poverty.

Picture Story Board - Chandramathi’s Story (intellectual disability) Chandramathi's Story, Illustration 26 FIGURE 26: CHANDRAMATHI IS AN 18-YEAR-OLD GIRL AFFECTED BY INTELLECTUAL DISABILITY

Chandramathi's Story, Illustration 27 FIGURE 27: CHANDRAMATHI’S PARENTS APPROACH THE HEALTH WORKERTO UNDERSTAND ABOUT THE SICKNESS OF THEIR CHILD

Chandramathi's Story, Illustration 28 FIGURE 28: THE MOTHER HAD NO ACCESS TO NUTRITIOUS FOOD DURINGPREGNANCY

Chandramathi's Story, Illustration 29 FIGURE 29: DOCTOR INFORMS THE PARENTS THAT THEIR DAUGHTER WOULDNEVER BE LIKE OTHER CHILDREN

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Chandramathi's Story, Illustration 30 FIGURE 30: CHANDRAMATHI’S BROTHER, SISTER, FRIENDS AND OTHERSWOULD NEVER PLAY OR TALK TO HER

Chandramathi's Story, Illustration 31 FIGURE 31: OFTEN THEY WOULD TEASE CHANDRAMATHI BY THROWING THINGS AT HER FROM THE WINDOW

Chandramathi's Story, Illustration 32 FIGURE 32: OFTEN HER PARENTS WOULD BE CURSED BY THE NEIGHBOURS

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Chandramathi's Story, Illustration 33 FIGURE 33: CHANDRAMATHI’S MOTHER SCOLDS AND PULLS HER BACK SAYING, “YOU CAN’T GO TO SCHOOL”

Chandramathi's Story, Illustration 34 FIGURE 34: COMMUNITY WORKER SUGGESTS TO THE PARENTS TO SEND THEIR YOUNG GIRL FOR VOCATIONAL TRAINING

Chandramathi's Story, Illustration 35 FIGURE 35: THE COMMUNITY WORKER ALSO INFORMS THE FAMILY ABOUT THE PWD ACT 1995

Chandramathi's Story, Illustration 36 FIGURE 36: AT THE VOCATIONAL TRAINING CENTRE CHANDRAMATHI IS SPOKEN TO RUDELY BY THE INSTRUCTOR

Chandramathi's Story, Illustration 37 FIGURE 37: THE BANK REFUSES TO GIVE LOAN TO A GIRL WITH MENTAL RETARDATION. THE BROTHER IS FORCED TO EARN A LIVING.

Chandramathi's Story, Illustration 38 FIGURE 38: THE LOCAL POST OFFICE IS NOT ABLE TO COMMUNICATE WITH RAJU A BOY, WITH HEARING IMPAIRMENT AND HE IS NOT SELECTED.

PROBLEM ANALYSIS FLOW CHART – CHANDRAMATHI’S STORY

Focal problem: Social exclusion of persons with disabilities or marginalisation

CAUSES:

va. LIMITED STATISTICS / CENSUS – DPOs not pressurising – PWDs not considered a vote bank

vb. LIMITED STATISTICS/CENSUS – 3% Budget allocation not fully utilised –Limited Access to Resources (PHC/ Schemes/Health) – Limited Aids/Appliances – Limited monitoring

EFFECTS:

ia. Isolation (within house) – Limited interaction with friends/peer group/neighbour – Less opportunity for participating in social events – Teasing – Low confidence of persons with disabilities emotionally disturbed

ib. Isolation (within house) – Limited interaction with friends/peer group/neighbour - Low confidence of persons with disabilities emotionally disturbed

iia. Less opportunity for livelihood – Chronic Poverty

iib. Lack of treatment leads to secondary problems – Chronic Poverty

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xxxi. Picture Story for Case Analysis

FIGURE 39: SHOW THIS SINGLE PICTURE AND ASK THE GROUP TO LIST OUT THE CAUSES AND EFFECTS Picture Story for case analysis, Illustration 39 FIGURE 39: SHOW THIS SINGLE PICTURE AND ASK THE GROUP TO LIST OUT THE CAUSES AND EFFECTS

xxxii. Khurshida’s Story (visual impairment)

Khurshidabanu was born and brought up in Kaprada village in Gujarat. She has been visually impaired since her birth. She has four elder sisters and no brother. One of Khurshida’s elder sisters is also visually impaired. Her three other non-disabled sisters are married and well-settled. The family always faced financial stress because her father Jamiyat Miya is a farmer and the only earning member in the family. As agriculture is heavily dependent on erratic rainfall, the income generated was never enough. Hence, the family was always indebted to the local money lender for one or the other reason like marriage, illness, etc. All the members of the family were engaged in earning and none of them was sent to school.

Once Khurshida grew older, she wished to share the responsibility of the household with her father but was not aware about what she could do. She helped her mother in the household chores and played with her sister’s children when they visited them. Fetching fuel wood and water from the well were the most tedious tasks for Khurshida as many times people would leave unwanted stuff on the pathway and she would bump into them. She often felt very miserable when the neighbour’s children teased her and laughed at her when she passed by. She was never invited to functions in the village like marriages or naming ceremonies of new born babies. In fact, even if she happened to accompany her mother to one of them, she would hear people whispering behind her back that now an evil shadow would be cast on their child as Khurshida had participated.

One day through a radio programme Khurshida came to know about the life stories of a couple of women with visual impairment who had been able to get education and were now gainfully employed. One of them was earning a decent salary as she had a government job and a couple of others were engaged in home-based activities with the support of loans from the local bank. These women with visual impairment who had aired their experiences over the radio were being supported by an NGO.

With the help of a local NGO Khurshida was able to get a disability certificate and bus pass. This was however not easy, as initially her father vehemently objected to the CBR worker taking Khurshida out of the village as he was a male worker. He gathered the village community on this proposition and they all beat him up. On his next visit, the CBR worker came with his boss who was a woman and finally Khurshida’s father agreed to let her go out for getting a disability certificate.

After her mobility training, Khurshida approached the panchayat to apply for work under MGNREGA but was promptly told that there was no work available for blind people, and that too a woman. There was only manual work available and not fit for women. She also applied for a disability pension but this has not yet been approved. She approached the local Mahila Mandal but said that it was not ready to take a blind woman in the group as she would not be able to contribute anything. She was also informed that she should be a member of a disability group where she would find other people like her.

Khurshida then came to know that there was possibility of getting a loan from the local bank under the Swayam Sidhha Microfinance Scheme to start a self-employment venture. She discussed this with her family and they decided to open a petty shop of grocery items in the front yard of the house so that she and her elder sister, who is also visually impaired, could manage it with the support of their parents. Her other sisters also pitched in and began to support her by supplying some saleable items available in their place of residence. Within a couple of months the petty shop began to show signs of profit. This became a source of envy for the neighbours and they all ganged up to try and sabotage her flourishing business by spreading rumors like, if people purchased things from her shop then perhaps their children would be disabled, that she was doing some magic to attract people to buy from her shop and was perhaps selling unhealthy food products, etc. Even though Khurshida’s business was flourishing she faced several obstacles from the community and she began to wonder about what she should do and whom she should approach for help.

PROBLEM ANALYSIS FLOW CHART – KHURSHIDA’S STORY

Focal problem: Social exclusion of persons with disabilities or marginalisation

CAUSES:

POVERTY – Inadequate agricultural yield –Indebtedness of family - Limited resources – Malnutrition – Limited use of services

iia. LIMITED INFORMATION –Limited availability of support service – Limited use of services – Malnutrition

iib. LIMITED INFORMATION – Inaccessible environment –Limited use of services – Malnutrition

iic. LIMITED INFORMATION – Superstitious belief – Disability a stigma – Discourteous behavior – Non-acceptance by society in social functions – Non-acceptance of women with disabilities in women’s groups

iid. LIMITED INFORMATION – Limited data by development organisation

iii. GENDER DISCRIMINATION – Insensitive towards women with disabilities – Limited opportunities for education and employment for women with disabilities - Non-acceptance of women with disabilities in women’s groups – Non-acceptance by society in social functions

EFFECTS:

ia. Limited help/support from society – Jealousy – Low self confidence – Dependent and sub-human living / chronic poverty

ib. Limited help/support from society - Low self confidence – Dependent and sub-human living / chronic poverty

Low economic condition - Health Issues – Dependent and sub-human living / chronic poverty

Empty Heading

xxxiii. Pramila’s Story (visual impairment)

Pramila is a 30-year-old woman with visual impairment who lives in Harangoan village of Barwani in Madhya Pradesh, India. She was brought up in a poor family with five elder sisters. Her family earned a living as agricultural labourers. As she was visually impaired and the youngest child, she was not expected to work in the fields. Hence when an NGO worker approached her family to provide rehabilitation support, the family agreed. She was educated at the local high school with the support of teachers, friends and family and scored the 1st division in school as well as at the college. She went on to complete her B.Ed. and a certificate course in Computer Application from IGNOU. After completing her education she was informed about a vacancy of a Computer Teacher at the local secondary school through the district Special Employment Exchange of the MP government. This was a golden opportunity for her. She was keen to seek employment so that she could not only support her family, as her father had a huge debt to repay the money lender, but also this would increase her prospects for marriage.

When her friends came to know of her decision to apply for a job, they said, “This is going to be very difficult for you. You better look for something else. Maybe, you can work from home – open a shop or something else. We know of many disabled persons who have applied but the recruiters are not easy to convince. Even if you somehow manage to get in, it won’t be easy for you to adjust to the school environment.” Despite being discouraged, Pramila was determined and she decided to apply. As predicted, the difficulties began even before she entered the examination hall. The admission card for the entrance exam was not provided to her in Braille and hence she had difficulty in locating the room allocated to her at the examination site. When she began to write the exam online, she discovered that the computer was not enabled with the text to speech software and a Braille keyboard. She then requested the examination supervisor for a scribe/ assistant. He angrily replied, “I have to attend to so many applicants. You are not the only one. What is all this you are talking about! I have never heard of this. You should go to a bigger centre where you may get all what you are asking for…” Pramila was unable to take this exam.

Pramila was a member of a local disability group so she approached the secretary of this group for help. The secretary promptly responded and they jointly filed an application with the State Commissioner for Persons with Disabilities. Based on the merit of the case, the Commissioner issued an order to the State Staff Recruitment Board of the Madhya Pradesh Education Department to arrange for a special examination. On-site facilities to enable Pramila to take the entrance exam were provided and Pramila passed the written test with flying colours. She was then required to appear for a panel interview. The interview panel was shocked and reacted when it saw her and asked her several questions about how she could perform her role as she was unable to see. Pramila defended herself well but the recruitment board was not convinced and openly told her, “We cannot appoint you. We don’t think it will be possible for you to manage your class of rowdy students. You should probably look for some other job where you do not have to interact with too many people.” While Pramila was leaving the room, she overheard the panel discussing that it had to fill this position with a person with disability and that it would rather select a suitable male candidate with locomotor disability.

With the support of the disability group, Pramila again filed a complaint with the Disability Commissioner seeking appointment under the 3% reservation of the PWD Act 1995. This time the verdict of the commissioner was not accepted by the Education Department. An appeal was then made to the State High Court which compelled the Education Department to offer her the position after several years.

As a teacher Pramila performed very well and was very popular with the students. She knew each child by name and was on friendly terms with the parents of the children. She also began to have a place in the community, where she was involved in enrolment campaigns of the girl child through the panchayats, counselled pregnant mothers and helped the ASHA health workers identify children for immunisation.

However, her fellow colleagues highly disapproved of Pramila’s style of teaching and interaction with the students and gave negative feedback about her to the school Principal. Pramila was denied a promotion that was due 3 years later as the school authorities were not agreeing to her style of functioning. This was very upsetting for Pramila and she began to wonder when she would have to stop fighting for her rights and how much energy she could muster up to keep on proving herself.

PROBLEM ANALYSIS FLOW CHART PRAMILA’S STORY– 1

Focal problem: Social exclusion of persons with disabilities or marginalisation

CAUSES:

POVERTY – Large family – Indebtedness of family - Agriculture dependent on rain/monsoon

LIMITED INFORMATION – Negative attitude of interview committee – Education department not convinced about abilities of persons with disabilities – Negative attitude of principal/teacher exam supervisor – No access to facilities in examination hall for disabled eg. Admission card in Braille, accessible software – Indifference/apathy of government machinery

WEAK ACCESS TO JUSTICE – Limited powers of Commissioner for Persons with Disabilities – Woman struggling for rights that are due to them – Policies not being implemented – Indifference/apathy of government machinery – Not aware about 3% reservation – No access to facilities in examination hall for disabled eg. Admission card in Braille, accessible software

DISCRIMINATION – Discrimination based on gender – Discrimination based on disability – Woman with visual impairment not being given a job – Not aware about 3% reservation

EFFECTS:

Use of person with disability by family based on their need – Investing in persons with disabilities considered wastage of time

iia. Investing in persons with disabilities considered wastage of time - Family not considering disabled person fit for participating in agri. activity

iib. Investing in persons with disabilities considered wastage of time - Promotion rules not followed – Despondent attitude

iiia. Restrictions on mobility – Low chances of marriage

iiib. Restrictions on mobility – Colleague /teachers uncooperative

iva. Colleague /teachers uncooperative

ivb. Greater effort required by person with disability to prove herself / himself – Despondent attitude

ivc. Long struggle for rights by women/ persons with disabilities

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3.4 Engaging Stakeholder Participation

3.4.1 How to Engage Stakeholder Participation (Reading)

A stakeholder is an individual or a group or an institution or a partner who is connected, has a stake, or has a vested interest in the

project. Stakeholders have the potential to be affected, gain or lose with the impact of activities carried out by the project. The participation and involvement of the stakeholder is essential in achieving the goal of the project and ideally they must be involved from the planning stage itself.

Conducting a stakeholder analysis is essential for identifying the issues involved, and for developing a strategic relationship with and between the partners. A Stakeholder Analysis (SA) helps identify the potential threats/ risks and challenges that could be posed to the project and also helps in identifying the actors who could play a positive role in the accomplishment of the project. SA indicates the opportunities and relations that need to be strengthened during the implementation phase. It helps to identify the groups that need to participate in the different stages of the project, devise appropriate strategies for stakeholder engagement and helps to reduce negative impact on project outcomes and on vulnerable groups.

Conducting an SA is an essential component of situation analysis as it enables in identifying the key actors, their importance and influence and how they could be involved in the programme. SA also provides space for examining the role, inclusion, representation and influence of target groups: the distribution of tasks, activities and rewards associated with division of labour between men and women.

SA could be undertaken by organising a workshop, focus group discussion and interviews. Follow the following steps in conducting an SA analysis:

i. Identification of Key Stakeholders

First, identify the key stakeholders whose participation could be sought for the successful implementation and completion of the project. The type of stakeholders could be beneficiaries, supporters, opponents, resource providers and vulnerable groups. Once the list is ready then the stakeholders listed could be prioritised.

TABLE FOR PRIORITISING STAKEHOLDERS

Stakeholders

Name

Priority level

Beneficiary

Supporters

Opponents

Resource providers

Vulnerable groups

Others

ii. Assessment of Importance and Influence

The next step is to assess the importance, influence and the level of impact each stakeholder has on the project. After the stakeholders have been prioritised, create a profile of each stakeholder. The detailed sheet of each stakeholder could contain all or some of the following information given below:

Once the individual sheets containing the profile of each stakeholder have been made, these could be compiled in the following matrix. The roles of all the stakeholders could be analysed in one matrix to assess the level of importance (interest) and the level of influence (power) it has on the project on a 1-10 scale with 10 indicating very high influence and high importance.

EXAMPLE: STAKEHOLDER PROFILE SUMMARY MATRIX–POLIO ERADICATION

Stakeholder Profile

Role in Project

Motivation

Perceived Expectations and Goals

Importance to the Project for its Success: Level of
1-10

Potential Negative Impacts of the Stakeholder

Influence on the success or failure of the project Level of
1-10

Planned / Intended participation methods

How they will use the project for their benefit

Minister of

Health

Overall decision maker

Status for CDC

funds

Success means keeping his job

In line with a

polio eradication project: a knowledgeable minister

10

Could pull the

project if another donor priority prevails

10

Provide project

document for signature

Status for new

project funding

District Health

Officer

Implementer responsible for outputs

Job-related

success or failure; no financial incentives

Helped design

project; informed and supportive of project goals and objectives

8

Could lose

interest or be assigned other priorities

2

Help with

implementation

Promotion if the

project is successful

Health

Professional: Doctor, Nurse, Clinic Staff

Implementer

Financial

incentive overtime

Believes in polio

inoculations agrees with the project

3 – This is part

of their job.

Minimal

1

Help with

implementation

Ease of workload

Religious Leader

Cultural

Influence

Beliefs based on

correct or incorrect information

Wants to be

certain that religious practices are not violated

10 – Parents will

follow what their religious leader says

High potential if

the religious leader says that polio inoculations

could cause harm

10

Help with

implementation

Possible

increased credibility

Parent

Beneficiary

Good heath of

child

Fear of illness

because of foreign medicines introduced to child

10 – must bring

their children to the clinic

Could refuse the

inoculations for the child

10 – Could

influence their child not to get the inoculation

Recipient

Peace of mind

for children

Child

Beneficiary

Health (no polio)

Fear of shots;

lack of

knowledge about polio

10 – must get the

inoculation to ensure the project’s numbers are good

Unlikely unless

the parents refuse the inoculation

1

Recipient

No polio

Once the list of stakeholders is ready with the level of importance and influence, they will have trust on the project. It will also reflect the relationship in terms of who has more influence and control over whom. The following example from a Polio Eradication Project reflects the stakeholders and the relationship it has with the identified stakeholders. This is very well represented through a Ven diagram. The project – Polio Eradication – is drawn as a big circle. The stakeholders inside and outside the project are represented in smaller circles. The stakeholders represented inside the project circle are: health care professional, child and parent. These are the main stakeholders and are interlinked to one another represented in overlapping circles in the Ven diagram inside the project circle. On the outer side on the periphery of the project circle there are other stakeholders: district health officer, Ministry of Health officer and religious leaders that have greater influence and importance on the project. These stakeholders are represented in larger circles.

iii. Engagement and Partnership with Stakeholders

The fourth step is in identifying the role and the level of participation of each stakeholder and the point at which each needs to be engaged in during the implementation phase for a meaningful collaboration. Based on who needs or wants to be involved and how; appropriate partnership strategies will need to be developed for the engagement of each stakeholder. Each stakeholder will be engaged in different ways at each stage of the project: giving and taking information/ advice, consultation, dialogue, working together, partnership and collaboration.

Participation of all stakeholders at each stage of the project is crucial for its successful completion and meaningful impact for the community or target group.

A ladder of participation was developed in the early, ‘90s to enable project planners and developers assess the type of participation/ engagement required from each stakeholder and at what stage. There are various stages of participation and the level of participation is determined by the scope and space for and level of decision making involved in the project by each stakeholder. The ladder could be explained as follows:

Finally, list out in a separate sheet the three main participation levels that will be used in your particular project and the purpose for which the stakeholder will be engaged.

iv. Developing Effective Strategies for Stakeholder Engagement

The final step in the SA is to link the stakeholders’ profile with the categories mentioned in the participation ladder and identify practical strategies for the engagement of the stakeholders. Various methods could be used to engage the participation of stakeholders like workshops, interviews, role plays, small group discussions (round robin method).

EXAMPLE : STAKEHOLDER PARTICIPATION - LEVEL MATRIX

Stakeholder Participation Matrix for Polio Eradication Project;

*Checked boxes apply to each Stakeholder in terms of his/her level of participation in the Project

Stakeholder Name /Ladder of Participation Ranking

Information- Sharing

Consultation

Provision of Material Incentives

Functional Group Formation

Collaboration in Decision Making

Empowerment and Self- Actualisation as a Decision Maker

Ministry of Health

xx

xx

xx

xx

District Health Officer

xx

xx

xx

xx

xx

Health Care Professionals

xx

xx

xx

Religious Leader

xx

xx

xx

xx

xx

Parents of local schools, children

xx

xx

xx

xx

Children

xx


Source: http://www.cdc.gov/globalhealth/SMDP/

References

http://www1.worldbank.org/publicsector/anticorrupt/PoliticalEconomy/PDFVersion.pdf

http://www.cdc.gov/globalhealth/SMDP/

49

3.4.2 Session Plan and Facilitation Notes: Engaging Stakeholder Participation

Session I - Converting the Problems of Social Exclusion into Achievable Objectives

Time: 1 hour

Materials: Flipcharts, markers, white board, Reading on How to Engage Stakeholder Participation

Method: Large group discussions in the plenary

Objective:

The participants will be able to convert the problems or barriers to social inclusion based on their own experience into achievable objective/ outcomes.

Process:

For example, the broad objective statement could be ‘To create awareness about persons with disabilities or on disability rights’ for the negative state – low awareness

Facilitator ’ s Note:

The following are 3 sets of examples of converting the causes into achievable objective statements and the negative state of effects into positive states:

Example 1

Causes Converted Positively

CAUSE : Limited awareness on disability

OBJECTIVE STATEMENT : Create awareness on rights of persons with disabilities

CAUSE: Poverty

OBJECTIVE STATEMENT: Promote livelihood for the families of persons with disabilities and for persons with disabilities

CAUSE: Limited access to information on health

OBJECTIVE STATEMENT: Promote access to information on health services

CAUSE: Injustice / discrimination

OBJECTIVE STATEMENT: Advocacy and lobby for promoting disability rights

Negative Effects Converted Positively

EFFECTS (NEGATIVE STATE) : Dependent

EFFECTS (POSITIVE STATE) : Independent

EFFECTS (NEGATIVE STATE): Isolation

EFFECTS (POSITIVE STATE): Increased association with friends

EFFECTS (NEGATIVE STATE): Neglect

EFFECTS (POSITIVE STATE): Empathy

EFFECTS (NEGATIVE STATE): Low self-confidence

EFFECTS (POSITIVE STATE): Confidence built

EFFECTS (NEGATIVE STATE): Non-acceptance

EFFECTS (POSITIVE STATE): More encouragement

Example 2

Causes Converted Positively

CAUSES : Violation of Human Rights

OBJECTIVE STATEMENT : Protection of Human Rights

CAUSES: Limited Accessibility – Physical and Communication

OBJECTIVE STATEMENT: Creating barrier-free built environment and access to information in accessible formats

CAUSES: Limited awareness

OBJECTIVE STATEMENT: Creating awareness on disability

CAUSES: Limited opportunity for Inclusive Education

OBJECTIVE STATEMENT: Compulsory inclusive education for people with disability

CAUSES: Limited statistics on disability

OBJECTIVE STATEMENT: Promote research and studies to make available data and experiences on disability

Negative Effects Converted Positively

EFFECTS (NEGATIVE STATE) : Isolation

EFFECTS (POSITIVE STATE) : Included with everyone

EFFECTS (NEGATIVE STATE): Low self-confidence

EFFECTS (POSITIVE STATE): Increased self-confidence

EFFECTS (NEGATIVE STATE): Less opportunity for participation

EFFECTS (POSITIVE STATE): Create more opportunities for participation in decision making

EFFECTS (NEGATIVE STATE): Teasing

EFFECTS (POSITIVE STATE): Respect for all

Example 3

Causes Converted Positively

CAUSES : Limited awareness/information on disability

OBJECTIVE STATEMENT : Create awareness on rights of persons with disabilities

CAUSES: Limited access to the built environment

OBJECTIVE STATEMENT: Create barrier built-free environment

CAUSES: Poverty

OBJECTIVE STATEMENT: Create employment/ livelihood opportunities according to skills

CAUSES: Aids and appliances not disbursed properly

OBJECTIVE STATEMENT: Improve access to aids and appliances

CAUSES: Discrimination

OBJECTIVE STATEMENT: Enable persons with disabilities to collectively demand their rights

Negative Effects Converted Positively

EFFECTS (NEGATIVE STATE) : Low self-confidence

EFFECTS (POSITIVE STATE) : Increased self-confidence / shyness

EFFECTS (NEGATIVE STATE): Frustration

EFFECTS (POSITIVE STATE): Encouragement

EFFECTS (NEGATIVE STATE): Loneliness

EFFECTS (POSITIVE STATE): Maintains relationships with friend and relatives

EFFECTS (NEGATIVE STATE): Disrespect the needs/aspirations of persons with disabilities

EFFECTS (POSITIVE STATE): Respect the needs, aspirations of persons with disabilities

EFFECTS (NEGATIVE STATE): Negligence

EFFECTS (POSITIVE STATE): Acceptance

EFFECTS (NEGATIVE STATE): Stress

EFFECTS (POSITIVE STATE): Balanced / peaceful/ contented

EFFECTS (NEGATIVE STATE): Unable to get married because of disability

EFFECTS (POSITIVE STATE): Get opportunity for socialising

EFFECTS (NEGATIVE STATE): Teasing

EFFECTS (POSITIVE STATE): Friendship/ companionship

Session II: Stakeholder Analysis

Time: 2 hours

Materials: Flipcharts, whiteboard / blackboard / markers, Reading 3

Method: Small group and large group discussion

Objective:

Process:

Facilitator ’ s note:

The following examples could be used to further explain how this could be done:

Example 1

Example 2:

The following are some of the enabling and hindering stakeholders for promoting inclusive education:

Enabling Stakeholder:

Hindering Stakeholders:

Stakeholders who will not do anything:

Political Leaders have great influence but medium importance/ power/control in bringing change in the examination system of the Secondary Examination Board. Similarly Secondary Examination Board has high influence and importance because this government body decides the exam schedule, conducts examination throughout the State and publishes result.

Four approaches to engaging stakeholder participation:

Neighbours and shopkeepers have low influence and importance. So the DPO should involve them in their activities, otherwise they may create obstacles in achieving this objective.

Example 2:

‘Creating awareness on disability rights’

Facilitator ’ s note:

50

TABLE OF STAKEHOLDER ANALYSIS (Example)

(√) symbol is used in the table for High, Medium and Low Influence and (O) symbol used is for High, Medium and Low control or power

Sl. No.

Stakeholder

High influence/ control or power

Medium

influence/

control or

power

Low influence/ control or power

Strategies for engaging participation

1

Stake holder

Persons with Disabilities

High influence

√

Low control or power

O

Strategies for engaging participation

Persons with disabilities should accept their disability, CBR training, contact with other persons with disabilities, be aware of their rights, develop role models of persons with disabilities, involve persons with disabilities in the activities of the DPOs/ Self-help groups

2

Stake holder

Parents

Low influence and Low control or power

O √

Strategies for engaging participation

Counselling for acceptance, creating awareness, ask for policy changes and advocacy

3

Stake holder

Family/ relatives/ community/ villagers

Medium

control or

power O

Low influence √

Strategies for engaging participation

Counselling for acceptance, creating awareness, share positive stories of persons with disabilities

4

Stake holder

Director of Disability Affairs Department/ Social Defence Department/ Department of Social Justice and Empowerment

High influence √

Medium

control or

power

O

Strategies for engaging participation

Sensitisation, press for implementation and monitoring of schemes, advocate with them to sensitise other departments

5

Stake holder

Media

High influence √

Low control or power

O

Strategies for engaging participation

Rapport building and regular follow-up and updates

6

Stake holder

Panchayat Representatives/ committees at all levels

High control or power

O

Medium influence

√

Strategies for engaging participation

Sensitisation on disability and advocate with the panchayat to implement schemes

7

Stake holder

Police /ACP

High influence

√

Medium control or power

O

Strategies for engaging participation

Invite them for meetings, follow-up and changing policies and practices

8

Stake holder

MLA / MP / MLC

High influence

√

Low control or power

O

Strategies for engaging participation

Invite them for meetings, influence and follow up for changing policies and practices

9

Stake holder

DC

High influence

√

Medium control or power

O

Strategies for engaging participation

Discuss issues and issue notice for action

10

Stake holder

Doctors/ health departments./ district and State civil hospitals

Medium Influence and control or power

√ O

Strategies for engaging participation

Sensitisation, counselling, guidance and confidence building, CBR

11

Stake holder

District & block level court / lawyers/ judges (High and District Courts)

High influence

√

Medium control or power

O

Strategies for engaging participation

Sensitisation, file cases and demonstrate case laws

12

Stake holder

DPOs

High influence

√

Strategies for engaging participation

Sensitisation, advocate for disability rights

13

Stake holder

Corporators/ counsellors

High influence

√

Medium control or power

O

Strategies for engaging participation

Conducting awareness programmes for the officials and provide suggestions to government

14

Stake holder

Chief Commissioner for Persons with Disabilities /Commissioner for Persons with Disabilities

High influence

√

Medium control or power

O

Strategies for engaging participation

Bring to notice disability issues, raise awareness about disability laws/ policies, provide suggestions to government departments

15

Stake holder

Department of Women and Child Development

High influence

√

Medium control or power

O

Strategies for engaging participation

16

Stake holder

Rural Development Department (Panchayat Raj)

High influence

√

Medium control or power

O

Strategies for engaging participation

17

Stake holder

Child Welfare Committee

High influence and control or power

√ O

Strategies for engaging participation

18

Stake holder

State Human Rights Commission

High influence

√

Medium control or power

O

Strategies for engaging participation

19

Stake holder

Juvenile Justice Board

High influence and control or power

√ O

Strategies for engaging participation

20

Stake holder

Chief Minister

High influence

√

Low control or power

O

Strategies for engaging participation

21

Stake holder

Child Rights Commission

High influence

√

Medium control or power

O

Strategies for engaging participation

22

Stake holder

Rotary Club

High control or power

O

Medium influence √

Strategies for engaging participation

23

Stake holder

WHO Rehabilitation Centre

High influence

√

Medium control or power

O

Strategies for engaging participation

24

Stake holder

Transport Department

Medium Influence and control or power

√ O

Strategies for engaging participation

25

Stake holder

Youth and Linguistic Club

High influence and control or power

√ O

Strategies for engaging participation

26

Stake holder

Religious leaders

High influence

√

Low control or power

O

Strategies for engaging participation

27

Stake holder

Women’s Commission

High influence

√

Medium control or power

O

Strategies for engaging participation

28

Stake holder

Rehabilitation Council of India

High influence

√

Medium control or power

O

Strategies for engaging participation

29

Stake holder

Celebrities from film and sports industry

High influence

√

Low control or power

O

Strategies for engaging participation

30

Stake holder

District Disability Rehabilitation Centre

High influence

√

Medium control or power

O

Strategies for engaging participation

31

Stake holder

Banks

Medium Influence and control or power

√ O

Strategies for engaging participation

32

Stake holder

Post Office

High control or power

O

Medium influence √

Strategies for engaging participation

33

Stake holder

Gram Panchayat – sarpanch, elected members, gram sevaks

High control or power

O

Medium influence √

Strategies for engaging participation

34

Stake holder

TDO/DDO/BDO/ Talati/ Mamlatdar

High control or power

O

Low influence

√

Strategies for engaging participation

Raise issues of persons with disabilities in the gram sabha, training /sensitisation on disability during their meetings (monthly), advocacy for pro-active disclosure

35

Stake holder

DPO, DEO, GCERT, NCERT, MHRT / Education Department/ school/ teachers/ students

Medium control or power O

Low influence

√

Strategies for engaging participation

Sensitisation, making available accessible books/ TLMs, promoting inclusive education, reviewing curriculum from a disability perspective

36

Stake holder

State Transport

Medium control or power O

Low influence

√

Strategies for engaging participation

37

Stake holder

Asha worker / Anganwadi / Balwadi worker/ ANMS/ Doctors /health professionals

Low influence

√

Strategies for engaging participation

Awareness and information through meetings, incorporate early identification and diagnosis in this curriculum, raise issues in the village health committee, enable persons with disabilities to be representatives on these committees

38

Stake holder

Post, bank, railway, courier

Medium influence

√

Low control or power

O

Strategies for engaging participation

39

Stake holder

Family and Child Welfare Department

Medium control or power

O

Low influence√

Strategies for engaging participation

40

Stake holder

Consumer protection units

High influence and control or power

√ O

Strategies for engaging participation

41

Stake holder

ITI

Medium influence and control or power

√ O

Strategies for engaging participation

42

Stake holder

Corporates

High control or power

O

Low influence √

Strategies for engaging participation

43

Stake holder

Religious institutions

High control or power

O

Low influence √

Strategies for engaging participation

44

Stake holder

Anti-corruption bureau

High influence

√

Medium control or power

O

Strategies for engaging participation

45

Stake holder

Bank officer

Medium influence and control or power

√ O

Strategies for engaging participation

Sensitisation, provide evidence-based data on exclusion or non-participation of children with disabilities in schools

46

Stake holder

Chairman block level

Medium control or power

O

Low influence√

Strategies for engaging participation

47

Stake holder

Counsellor block level

Medium control or power

O

Low influence√

Strategies for engaging participation

48

Stake holder

Depot manager transport

Medium influence and control or power

√ O

Strategies for engaging participation

49

Stake holder

Fire engine officer

High control or power

O

Medium influence

√

Strategies for engaging participation

50

Stake holder

Other NGOs in the block /Social groups

Medium influence √

Strategies for engaging participation

Network, support on other issues,

engage in advocacy on disability issue

51

Stake holder

Public works department

High control or power

O

Medium influence √

Strategies for engaging participation

52

Stake holder

Post

High control or power

O

Medium influence √

Strategies for engaging participation

53

Stake holder

Electric department

High control or power

O

Medium influence √

Strategies for engaging participation

54

Stake holder

Telecommunication

High control or power

O

Medium influence √

Strategies for engaging participation

55

Stake holder

Temple authority

Medium influence and control or power

√ O

Strategies for engaging participation

56

Stake holder

Employment exchange/ Employers (Public and Private)

Medium influence and control or power

√ O

Strategies for engaging participation

Sensitise on abilities of persons with disabilities, inform about incentives and provision of 3% reservation under PWD Act, advocate recruitment, equal pay for equal work, sharing of experiences of employers who have employed persons with disabilities

57

Stake holder

District rehab office

Medium control or power

O

Low influence√

Strategies for engaging participation

58

Stake holder

SC / ST Corporation

Medium influence and control or power

√ O

Strategies for engaging participation

59

Stake holder

District bank authority

Medium influence and control or power

√ O

Strategies for engaging participation

60

Stake holder

District transport officer

Medium influence and control or power

√ O

Strategies for engaging participation

3.4.3 Scope and Applicability

This section elaborates the rational, objectives and the pedagogical approaches for conducting ‘Perspective Building and Situation Analysis’ for persons with cross disabilities, particularly persons with visual impairment (the totally blind and low vision), hearing impaired, cerebral palsy and other disabilities. In each of the sessions specific mention has been made how the learning needs of each of the groups could be addressed. For persons who are totally blind, material is to be made available in Braille as well as in audio form as there could be persons with visual impairment who may not be familiar with Braille. All matter written on flipcharts/ whiteboard is to be read aloud more than once. For persons with low vision material is to be made available in large print and they should also be seated in the front row. Communicating with persons with speech and hearing impaired is a challenge as there are variations in using sign language; hence it needs to be ensured that the sign language interpreter knows the sign language that the persons with hearing impairment understands. Visuals are useful for persons with sign hearing impairment as sign language does not follow the grammar pattern of languages. The concepts and sentences need to be broken down and communication is in terms of objects or words with suitable day-to-day examples. Visuals are also useful for persons who are semi-literate or illiterate. If this is done with the tips mentioned in the facilitator’s note, the applicability and scope of this module could be universalised.

The only thing that perhaps needs to be done is to generate region-specific cases for the approaches as well as for analysing the causes and effects of social exclusion of persons with disabilities. In the current toolkit, cases have been made keeping in focus the situation of persons with disabilities from western, eastern and southern parts of India. Once the concepts and methodology and pedagogical approach are clearly understood, region / country-specific cases could be evolved by the members of the DPO who have some background in participatory training.

51

4. TRAINING FOR BUILDING EFFECTIVE INSTITUTIONS/ DISABLED PERSONS
ORGANISATIONS (DPOs)

The training on ‘Building Effective Institutions’ aims to enable the DPOs to clarify the purpose of their institution or the reason for its formation. For this, it is first essential to understand the elements or the essential components of an organisation and then move on to understand that Vision and Mission define the purpose and the direction in which the organisation will work. Hence the second section focuses on enabling the organisation to develop an understanding of the difference between Vision and Mission and how to form the Vision and Mission statement through a case study method.

Once the participants understand this, they are slowly moved toward framing the Vision and Mission of their own organisations, and the process of collectivising this is demonstrated.

Lastly, the other essential component is the Structure of an Organisation and the various forms available that can be adopted by the DPO. Once the groups understand the relevance and function of a structure, they can examine their existing structure and make necessary changes or modifications, if need be.

52

4.1 Workshop Design (Suggested)

Recap of the previous workshop: It is necessary to do a detailed recap of the previous workshop. This may take up to 2 hours, depending upon the participants and how many are newcomers in this phase.

Elements of an Organisation

Time: 1 hour

Method: Large group discussion, lecture and interaction

Material: Flipcharts, whiteboard, markers, Reading on Understanding Organisations

Objective:

Understanding Vision and Mission

Time: 4 hours

Method: Case study analysis and group discussion

Material: Flipcharts, whiteboard, Reading on Vision and Mission and Handout xxxiii. Vijaykumar’s Story for forming Vision and Mission or Somnath’s Story – Script of a skit for forming Vision and Mission or Alpa’s Story – Script of a skit for forming Vision and Mission

Objective:

Collectivising the Vision and Mission of a DPO

Time: 4 hours

Method: Group discussion

Material: Flipcharts, markers

Objective:

Structure of an Organisation

Time: 1 hour

Method: Group discussion and lecture

Material: Flipcharts/whiteboard, markers, Reading on What is the Structure of an Organisation?

Objective:

53

4. 2 Elements of an Organisation

4.2.1 Understanding Organisations (Reading)

i. Elements of an Organisation

A group of like-minded persons with an ideological base comes together and forms an organisation. This group is supported by donors with a grant or seed fund to start the organisation. The donors or resource providers can be local people who provide a place for the organisation to begin work. There may also be other similar organisations that help and support the organisation’s objectives. All the supporters, be they individuals or organisations, become the ‘stakeholders’ in the process of supporting the organisation. Founder members primarily, and the resource providers secondarily, help define the mission, core values and vision of the organisation. The missions of organisations are stated in various ways like “to work for the oppressed and the poor people for their emancipation” or “to bring about social change and reduce discrimination and inequality”.

Different operational strategies are chosen to accomplish these missions. Some start economic activities for the poor and organise them in the process. Some organise the affected community first and then decide the next steps or course of action to be followed. Based on the needs and concerns identified by the target community or group affected, different activities like social forestry, agricultural development, adult education, income-generating programmes, forming self-help groups, awareness raising, reaching out basic services and rehabilitation of disabled persons or displaced population are drawn up. The activities and strategies are to achieve the mission and are primarily drawn up according to the needs of the area, the concerns expressed by the community and the understanding of the situation analysed by the founder members (and sometimes other stakeholders).

After formulating a specific strategy for accomplishing the stated mission, it is essential to create an organisation capable of implementing that strategy. The organisation provides detailed mechanisms for implementing the said strategy and take action. The vision indicates why ultimately the organisation exists, the mission explains what changes it promotes to achieve the vision, and the strategy defines how it will use its resources to accomplish those changes, and the organisation spells out the details of who, when, where, and by which activities the strategy will be carried out.

The organisation consists of five different elements: tasks and programmes of activities, formal structure, informal culture, human resources, and leadership. These elements may be developed in a greater or lesser degree. In the NGO sector or DPOs, for example, an organisation often has a strong leadership and highly committed human resources, but a less elaborated formal structure. These elements together divide the work among the staff and co-ordinate the activities of the different roles and departments. The different elements interact with each other, and depending on how well they ‘fit’ with each other, determine the effectiveness of the organisation in achieving or fulfilling its mission.

Tasks and Activities

To carry out the mission the organisation implements programmes and activities designed to solve some social or development problem. An initial challenge in creating the organisation is to specify the tasks and activities critical to implementing the mission. In NGOs or DPOs the tasks may be broadly categorised under basic tasks and inherent tasks.

Basic tasks are directly linked to the organisational mission or objectives as, for example, organising people, conducting group discussions, training, etc. The inherent tasks are those which may not have direct bearing on the organisational mission or objectives, but are necessary for the fulfilment of the basic tasks. These are tasks like writing letters, preparing reports and proposals, accounts-keeping and financial reporting, typing, posting, etc.

For the purpose of effectively running an organisation, both types of tasks need to be performed with equal vigour. The important factor in the understanding of these two types of tasks and their relationship in the context of creation of structure is the inseparable nature of the two. The structure which is thus created should be able to respond to the inseparable nature of basic and inherent tasks. Any structure tending to separate the two will not be conducive to the organisation.

The nature of tasks carried out by organisations may vary. If a task is certain, simple and clear, then a rigidly specified structure may be required to ensure its implementation. On the other hand, if the task is uncertain, complex and ambiguous, then a more flexible structure may be needed. Thus, different types of tasks may necessitate different types of organising.

Formal Structure

Formal structure includes roles, hierarchies, departmental divisions, rules, and formally-defined systems and procedures that guide behaviour. The issue of structure has been a sensitive one in the voluntary sector due to some politico-historical reasons. In recent years a sense of acceptance of structure as a necessary evil has emerged which needs to be further refined.

Organisations that are based on social commitment and are mission-driven need to develop a distinct attitude towards the issue of structure. The structure should serve the mission. It needs to be seen as a mechanism for the accomplishment of the mission. For this purpose it is essential to consciously evolve structures coherent with the organisational mission and objectives, instead of borrowing or adopting the models of structures already existing around us in the wider environment.

The organisation does not exist in isolation and is affected by the various elements in the outside and inside environment. The first influence comes from the interaction with the wider environment, both statutory and non-statutory. If we choose a definite form of organisation made available to NGOs or DPOs, then the organisation is bound to the requirements of that particular statute. The forms which are popularly used are registered Society or Trust; and that requires some kind of defined structures like 'Governing Body' or 'Board of Trustees' and 'Chief Functionary' or 'Managing Trustees', etc.

Informal Culture

Informal culture includes values, norms, shared beliefs and expectations, and implicit aspirations and understandings that shape and give meaning to action within the organisation. Staff and stakeholders join the organisation as they share a vision of 'the reality to be’ and a commitment to the mission. They bring with them commitments to core values and beliefs of the organisation, or they learn them shortly after joining the organisation. This shared set of beliefs helps to define both activities appropriate to the organisation's mission and actions that are consistent with the larger vision of society, and so informally guides many actions of the staff.

Particularly in new and small organisations it is common for informal understandings and cultural expectations to be the most important influence on staff/ volunteers’ behaviour. It may not be necessary to have formal and written rules and procedures when all the members have been parties to the negotiation of informal norms and expectations.

Human Resources

The human resources of an agency are essential for carrying out both the basic and inherent tasks. In NGOs and DPOs, the human resources are often highly committed to the organisation's mission and willing to work long hours in difficult circumstances in the service of a vision for a better future.

In recent years many agencies have found that effective implementation of their missions requires upgrading the technical capacities of their human resources. By building in 'professionalism', is as if there is an inevitable contradiction between commitment to visions and high levels of professional training and competence.

Leadership

Leadership plays a major role in shaping organisations and the activities of their members. Many organisations take their visions, missions, and strategies directly from the commitments of their founders.

This reliance on leaders means that agencies can respond quickly to external and internal changes, because they need only await decisions by their leaders before they can act. On the other hand, dependence on leaders may lead to long delays for important decisions, if leaders are overburdened or their attention is elsewhere.

Besides, the dependence on a single leader or founder can present problems when the founder is ready to move on. If an organisation’s dependence on the founder has hampered the development of a second-line leadership, there may be no one available to take over the founder's role in the agency. All too often good agencies have collapsed or spent many years rebuilding after the departure of the founder because they relied too long on the leadership of a single person.

ii. Compatibility among Organising Elements

Ideally, the different elements of an organisation – tasks and activities, formal structure, informal culture, and human resources – work together and support one another. The implementation of programme activities, for example, is facilitated by formal structures that divide and co-ordinate work, by informal expectations and understandings, and by appropriate energies and skills among the human resources of the agency. When the elements of an organisation work together, it can very effectively implement the strategies required to carry out its mission.

Often, however, there is tension among organising elements. In NGOs, for example, there may be tension between the expectations of the informal culture and the demands of a formal structure, especially when it has a formal structure imposed by external regulations or adopted without a process that leads to widespread internal acceptance. When informal and formal systems come in conflict, a great deal of talent and energy and time may be spent unproductively.

Many organisations have began as small units of 5-10 people who organised themselves largely through informal interactions and divisions of labour that required everyone to do a little bit of everything. As a result, all members have an overview of the challenges confronting the organisation, and decisions are made with widespread participation.

When the organisation is successful, the demand for their work expands. They may want to add new services or extend their services to larger areas. In either case, the size of the agency will grow. When agencies grow, they inevitably experience difficulties in dividing and co-ordinating work for at least two reasons. First, the variety of work presses for more explicit specialisation and division of work. Each member may type his/her own correspondence when the volume is 3 letters a week, but it becomes a big drain of time when everyone has 15 letters a week and poor typing skills. It may be a better use of resources to hire a secretary to type the letters and free other staff to carry out basic tasks. So the growth of an organisation may encourage more specialisation for a better use of human and other resources.

Secondly, as the number of people in an organisation grows, the difficulty of making decisions in a participatory process that includes everyone increases rapidly. Decisions that can be made easily in a group of 6 become more difficult in a group of 10 and close to impossible in a group of 20. The sheer volume of relationships to be managed in decision-making in a large group makes participatory decision-making difficult. In addition, everyone may not have access to the same amount of relevant information, and information differences further complicate participatory decision-making in large organisations. In short, with growth there is inevitable pressure for more formal organisational mechanisms to guide activity, quite independent of the wishes of the organisation’s leaders or members.

iii. Participation in Decision-Making

Participation in decision-making is a major issue for many organisations. Over the years, it may be helpful to identify different types of decisions that are required to be made in the organisation in order to distinguish appropriate kinds of participation. In general, the staff may want to participate in the decisions that affect them most and to which they can offer relevant inputs. In small organisations, it often means that all staff members participate in important decisions. In larger organisations, however, staff-wide participation in all important decisions can consume more time and energy and may produce low-quality decisions at the end.

iv. Changing Organisations

Reorganising the need to deal with changing circumstances in which the organisation is currently operating in is common, particularly since NGOs or DPOs are committed to promoting social changes that alter the circumstances in which we must operate. Some changes emerge from learning at the operational level. As staff members find that tasks can be accomplished better by redefining roles or renegotiating expectations, they may introduce organisational changes that alter operations without any change at the level of strategy or mission. Changes in tasks or human resources will require alterations in structure and culture and vice versa, if the fit among them required for effectiveness is to be preserved.

In changing organisations, the fit among mission, strategy, and organisation needs continuous review and re-articulation. As external circumstances change and as organisational capacities evolve, agencies in our sector need to re-evaluate the ways they organise and use their resources. Since resources will probably always be in short supply in the social sector, we need to be as productive as possible in using them to carry out our missions and strategies.

It is especially important that we look with clear eyes at the advantages and disadvantages of different organising elements. We cannot afford to reject tools for organising, as some have rejected formal structure, without carefully examining how they might be adapted and used to achieve our missions.

v. Frameworks for Organisational Behaviour

Enabling organisations to operate effectively is one important managerial task. Getting organisations to operate effectively is a challenge. We know that it is difficult to understand the behaviour of an individual and it is even more challenging to understand the behaviour of groups that are made up of different individuals. Comprehending the many relationships among these individuals is even more complex.

However, organisational behaviour must be managed in spite of this overwhelming complexity. Ultimately the organisation’s work is completed by people, individually or collectively, on their own or in collaboration with technology. This means that the leader or the key staff members, particularly the senior staff involved in the management or functioning of the organisation, need to develop the capacity to understand the behavioural patterns of individuals, groups, and organisations. They need to develop the ability to predict the behavioural responses that are likely to be elicited by various managerial actions and finally to use this understanding and these predictions to ensure the completion of the task in a timely manner while also contributing to the said mission.

Given their inherent complexity and enigmatic nature, appropriate tools are required to unravel the mysteries, paradoxes, and apparent contradictions that present themselves in the everyday life of organisations. One tool is conceptual framework or model. A model is a theory that indicates which factors (in an organisation, for example) are most critical or important. It also shows how these factors are related, that is, which factors or combination of factors causes other factors to change. A model is a roadmap that can be used to make sense of the terrain of organisational behaviour.

The models we use are critical because they guide our analysis and actions. In any organisational situation, problem - solving involves the collection of information about the problem, the interpretation of that information to determine specific problem types and causes, and the development of action plans accordingly. The models that individuals use influence the kind of data they collect and the kind they ignore; models guide people’s approach to analysing or interpreting the data they have; finally, models help people choose their course of action. The model’s major premise is that for organisations to be effective, their sub-parts or components must be consistently structured and managed – they must approach a state of congruence.

vi. A Congruence Model of Organisational Behaviour

Nadler and Tushman describe a model that specifies the critical inputs, the major outputs, and the transformation processes that characterise organisational functioning. This model puts emphasis on the transformation process and stress on the interdependence of the various elements of organisations. It views organisations as made up of components or parts that interact with each other. These components exist in states of relative balance, consistency or “fit” with each other. The different parts of an organisation can fit well together and function effectively, or fit poorly and lead to problems, dysfunctions, or performance below potential. The congruence model of organisational behavior is based on how well components fit together. Put simply, we need to deal with questions of the inputs the system has to work with, the outputs it must produce, the major components of the transformation process, and the ways in which these components interact.

Inputs

The first input is the environment, or all factors outside the organisation being examined. Every organisation exists within the context of a larger environment that includes individuals, groups, other organisations, and even larger social forces – all of which have potentially powerful impact on how the organisation performs. Specifically, the environment includes markets (clients or customers), suppliers, governmental and regulatory bodies, labour unions, competitors, financial institutions, special interest groups, and so on.

The environment has three critical features that affect organisational analysis. First, the environment makes demands on the organisation. For example, it may require certain products or services at certain levels of quality or quantity. Market pressures are particularly important here. Second, the environment may place constraints on organisational action. It may limit the activities in which an organisation may engage. These constraints range from limitations imposed by scarce capital to prohibitions set by government regulations. Third, the environment provides opportunities that the organisation can explore. When we analyse an organisation, we need to consider the factors in the organisation’s environment and determine how those factors, singly or collectively, create demands, constraints, or opportunities.

The second input is the organisation’s resources. Any organisation has a range of different assets to which it has access. These include employees, technology, capital, information, and so on. Resources can also include less tangible assets such as the perception of the organisation in the marketplace or a positive organisational climate. A set of resources can be shaped, deployed, or configured in different ways by an organisation. For analysis purposes, two features are of primary interest. One concerns the relative quality of those resources or their value in the light of the environment. The second concerns the extent to which resources can be reshaped or how fixed or flexible different resources are.

The third input is the organisation’s history. There’s growing evidence that the way organisations function today is greatly influenced by past events. It is particularly important to understand the major stages or phases of an organisation’s development over a period of time, as well as the current impact of past events – for example, key strategic decisions, the acts or behaviour of key leaders, the nature of past crises and the organisation’s responses to them, and the evolution of core values and norms of the organisation.

The final input is somewhat different from the others because in some ways it reflects some of the factors in the organisation’s environment, resources and history. The fourth input is strategy. We use this term in its broadest context to describe the whole set of decisions that are made about how the organisation will configure its resources against the demands, constraints, and opportunities of the environment within the context of its history. Strategy refers to the issue of matching the organisation’s resources to its environment, or making the fundamental decision of “What business are we in?” For analysis purposes, several aspects of strategy are important to identify. First, what is the core mission of the organisation, or how has the organisation defined its basic purpose or function within the larger system or environment? The core mission includes decisions about what markets the organisation will serve, what products or services it will provide to those markets, and how it will compete in those markets. Second, strategy includes the specific supporting strategies (or tactics) the organisation will employ or is employing to achieve its core mission. Third, it includes the specific performance or output objectives that have been established.

Outputs

Outputs are what the organisation produces, how it performs, and how effective it is. There has been a lot of discussion about the components of an effective organisation. At the organisational level, three factors must be kept in mind when evaluating organisational performance: (1) goal attainment, or how well the organisation meets its objectives (usually determined by strategy), (2) resource utilisation, or how well the organisation makes use of available resources (not just whether the organisation meets its goals, but whether it realises all of its potential performance and whether it achieves its goals by building resources or by “burning them up”), and (3) adaptability, or whether the organisation continues to position itself in a favourable position vis-à-vis its environment, that is, whether it is capable of changing and adapting to environmental changes.

The Organisation as a Transformation Process

So far, we’ve defined the nature of inputs and outputs of the organisational system. This leads us to the transformation process. Given an environment, a set of resources, and history, “How do I take a strategy and implement it to produce effective performance in the organisation, in the group/unit, and among individual employees?” In our framework, the organisation and its major components are the fundamental means for transforming energy and information from inputs into outputs. On this basis, we must determine the key components of the organisation and the critical dynamic that shows how those components interact to perform the transformation function.

Reference:

PRIA (undated). Management of Voluntary Organisations, New Delhi

David A. Nadler and Michael L. Tushman (1980). Organisational Dynamics, Autumn, by AMACOM, a division of American Management Associations.

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4. 2.2 Session Plan and Facilitation Note – Elements of an Organisation

Time: 1 hour

Method: Large group discussion, lecture and interaction

Material: Flipcharts, whiteboard, markers, Reading on Understanding Organisations

Objective:

Process:

Facilitator’s note:

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4.3 Understanding Vision and Mission

4.3.1 Vision and Mission - Reading

This reading explores the role of Vision and Mission in the formulation of organisational strategy. A clearly articulated and shared Vision and Mission is the foundation on which effective organisational strategies are built.

Background

Most development organisations are committed to changing some aspect of the current social, political, or economic reality. For instance, an organisation may be formed to provide literacy training to village women. In time, however, the organisation may find itself involved in a wide variety of other activities such as non-formal education, advising on small business development, and organising campaigns to protect the rights of self-employed women.

These expanded activities usually result from people’s real needs and from the people’s trust in the organisation’s past successes. However, the new activities may have little to do with the organisation’s original purpose, or with the existing skills or capacities of the organisation. If this happens, the organisation’s energies may be spread very thin, effectiveness may suffer, and organisation members may begin to wonder about the usefulness of their work, or about what they should be doing.

So what are visions and missions, and how can they be of use in maintaining an organisation’s effectiveness?

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Organisational ‘Vision’

An organisation’s vision often originates with an individual visionary founder, or with a group of people who have some ideas about how life could be better than it currently is. These ideas may spring from personal experience, or from a religious or ideological source. Whatever the source, visions are the lifeblood of effective development organisations in several ways.

A shared Vision is often the initial force that brings people together for collective action. People with visions of social or political change frequently decide they must join others who share their Vision if they are to have any hope of attaining it, and so join existing organisations or start a new one. Once joined together in an organisation, members may re-examine or refine their individual visions until a truly shared or collective one emerges. It is usually the role of the visionary founder or founding group to ensure that the Vision is kept alive, and stated in a way that it may be broadly shared by other organisation members.

Shared visions are vitally important throughout the life of a development organisation. Voluntary development work is often difficult, poorly paid, personally threatening, and results are sometimes invisible. A clearly articulated Vision can provide energy, momentum, and strength to individuals working in development organisations and can be continuing focus for their social commitment. A shared Vision can help bind an organisation together in times of crises, and provide the incentive to work through internal conflicts.

A Vision is only a starting point for building and maintaining an effective organisation. There are many ways in which a single Vision may be pursued, so it becomes necessary to decide more specifically what the organisation exists to do.

Organisational Mission

A statement of organisation Mission describes the organisation’s purpose for existing, given it Vision of the “reality to be.” It describes in general terms how the Vision is to be pursued. For example, one organisation whose Vision is to create “a world where no child ever dies of a preventable disease” has as its Mission “to reduce infant mortality by providing health services to women and children in underserved areas.” Another organisation with the same Vision might choose as its Mission to “engage in social mobilisation to change the economic conditions which foster malnutrition and disease.”

A clear Mission connects the Vision to a method for achieving that vision, and this has a number of benefits. A clear Mission can guide an organisation’s leaders in major policy decisions about alternative courses of action. It helps define both what the organisation will do and what it will not do. If understood broadly and shared, the Mission helps channel collective action in a common direction, so that people’s energy and organisation resources serve a common purpose. Otherwise, even people with a shared Vision may pursue individual paths to the Vision and the power of collective action would be lost. For people working on day-to-day operations, a shared Mission may provide meaning and motivation since it can help them see how their work contributes to attainment of the Vision.

The Mission is the starting point for keeping an organisation focused and effective. Shared Mission functions like a compass, bringing the organisation back on course despite constantly changing demands from constituents, shifting political and economic forces. As with the Vision, it is usually the role of an organisation’s leaders to articulate the Mission and help others understand it. But including other organisation staff, board members, and other constituents in formulating the Mission can be an effective way of building joint ownership and understanding of the Mission.

An organisation’s understanding of the social and political context is an important influence on its choice of Mission. This can be seen in the different missions of the two organisations described above. Different theories of social change and different understandings of the external context can lead to very different missions.

Only rarely, and usually after extreme organisational tension and pain, will an organisation change its Vision. Changing Mission is also a major shock to an organisation, and is a relatively unusual event. However, if there has been a big change in an organisation’s analysis of development problems, political space, or other constituent demands, re-examination of organisation Mission may be in order. A change in strategy is often sufficient to keep an organisation effective, even in the face of major shifts in its external context. But unless the Mission is occasionally tested against an analysis of the current situation, the organisation could cease to be an effective instrument for realising the Vision.

Source: Strategic Thinking, Institute of Development Research

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4.3.2 Session Plan and Facilitation Note – Understanding Vision and Mission

Time: 4 hours

Method: Case study analysis and group discussion

Material: Flipcharts, whiteboard, Reading on Vision and Mission and Handout xxxiv. Vijaykumar’s Story for forming Vision and Mission or Somnath’s Story – Script of a skit for forming Vision and Mission or Alpa’s Story – Script of a skit for forming Vision and Mission

Objective:

Process:

Facilitator’s note:

Example:

Vision: Economic empowerment of women

Mission:

“Every woman should have access to loan.” - Professor Yunus, Bangladesh

“Poor women will own a bank.” - Elaben Bhatt, Gujarat

“All nationalised banks will give loan to poor women without any collaterals.”

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xxxiv. Vijaykumar’s Story for forming Vision and Mission (Handout)

Vijay Kumar, a post graduate of Political Science from Durbhanga University, decided to start a group of young persons with disabilities in the eastern hilly regions of India in 2001. While studying at college he used to spend his spare time discussing politics with his college mates and also read aloud the textbooks, newspapers, local magazines for visually impaired students in the college. It was during his student years that the idea of starting a self-help group of visually impaired youth was conceived. After completing his master’s he got a job as a manager in a local tea estate. The salary package was decent and he had facilities of housing, etc. He stayed here for a while but was unhappy with the way the employers treated the workers and the working conditions extended to the daily workers who were employed as tea pickers. Distressed at not being able to improve the life conditions of the tea estate employees, he decided to quit this job after a year of service.

He moved on to join a national-level NGO that worked on Health and Nutrition. It had several outreach centres in the country and Vijay Kumar had the opportunity to travel around the country and meet several other NGOs, INGOs and government officials. While on tour, at times, he would suddenly come across a child with a disability, affected by polio or a child with visual impairment who, apart from belonging to poor families and facing malnutrition, had great difficulty in attending school due to long distances, unavailability of proper transport facilities, no learning material or teachers trained to teach especially children with visual impairment. Soon this began to bother him and he began to feel that perhaps children with disabilities were the most marginalised among the children from poor families.

During this period he read about the Rights of Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act 1995 that aimed to protect the rights of persons with disabilities. He read that this was a landmark Act and would now be able to grant basic education and employment for persons with disabilities in the country.

Vijay Kumar began to think how he could be more useful to this marginalised lot of persons with disabilities for whom perhaps not many would be working. He got in touch with his old college friends who were persons with disabilities. He found that most of them were unemployed despite having struggled to complete their post-graduation. He was very much affected by this and he recalled that his friends could obtain jobs in the public sector as well as the government under 3% reservation provided by the PWD Act. He got together two of his friends, Ismail, a person with visual impairment, and Abraham, with locomotor disability, and they filled in applications for various government jobs available. With some effort Abraham was able to secure employment but Ismail found it very difficult as he was visually impaired and no one wanted to take the risk of employing a person about whom they were not sure how he would be able to accomplish his tasks. Ismail became very depressed and began to feel that he was a burden on his family and society.

While reading the PWD Act 1995, Vijay Kumar and Abraham figured out that they could seek the help of the court as there was 3% reservation of seats in all government institutions and no person could be denied a job on the basis of disability. They decided to follow up on the last 2 positions that Ismail had applied for and began to seek legal advice. They figured out that the best way was to file a case with the State or the Chief Commissioner for Persons with Disabilities. After putting up a fight for several months at last Ismail was able to get a job of his choice. But the battle did not end here. He began to face several other problems of accessibility, especially those related to access to technology, as by now all documentation work was being done with the aid of computers.

Reflecting on their experiences of the everyday life difficulties faced in access to education and employment, by persons with disabilities, the three friends began to dwell on the thought that several other persons with disabilities would be facing similar difficulties and many more so if they belonged to poorer communities with limited access to basic services. They began to contact some of their friends and also met several institutions that worked for the rehabilitation of persons with disabilities. It was evident that access to basic services was a pressing need. Vijay Kumar began to explore in nearby areas and with great difficulty identified some persons with different kinds of disabilities – a middle-aged hearing impaired person who had never been to school, one visually impaired 8-year-old girl and several boys with locomotor disabilities. He found that the boys with locomotor disabilities were going to the village primary schools. Ismail and Abraham also took up villages near their homes and began to identify men, women and children with disabilities. Most of them resided in scattered locations and had not had any schooling. Some whiled away their time at home helping with the housework.

Seeing the secluded and isolated condition of persons with disabilities, the trio began to wonder how they could work with this deprived section of society and what they could do. The persons with disabilities and their families, with a strong belief in the theory of karma and fatalism, were not in a state of mind to do anything proactive. They were keener to get some benefits like a pension or concessions. But the three friends were keen to do something that would lead to finally restore the dignity of persons with disabilities.

At a Conference on Disability in New Delhi, Vijay Kumar happened to meet some academicians working on disability and while discussing with them he heard that India had signed a new international treaty – United Nations Conventions on the Rights of Persons with Disabilities (UNCRPD) in 2005, which has also been ratified by more than a hundred countries. This is a path-breaking convention that aims to restore the rights and dignity of persons with disabilities globally. In India, apart from the PWD Act 1995, there are other laws that aim to protect the rights of persons with disabilities – the Mental Health Act 1987, the Rehabilitation Council of India Act 1992, and the National Trust for Persons with Autism and Cerebral Palsy, Mental Retardation and Multiple Disabilities 1999. He was informed that apart from these Acts, as the country was a signatory to UNCRPD, all the existing laws would need to be aligned in consonance with the spirit enshrined in it. Also, if need be, new laws could be enacted, and in this light the Rights of Persons with Disabilities Bill 2012 has already been made and remains to be placed in Parliament.

While searching on the Internet, to historically understand the developments and shifts in approaches to disability, Vijay Kumar came across two books written by Michael Oliver, a British academician – ‘The Politics of Disablement’ (1990) and ‘Understanding Disability: From Theory to Practice’ (1996), that helped put in perspective the reasons for oppression of persons with disabilities. He clearly articulated that it is the disabling barriers in society – social, cultural, economic and physical - that limit the participation of persons with disabilities. While bringing to fore the denial of citizenship rights of persons with disabilities, Oliver questions the politics of oppression of persons with disabilities. This in many ways rang a bell in Vijay Kumar’s mind as in his student days he was very influenced by Paulo Frere’s theory, ‘Pedagogy of the Oppressed’ in which the efforts of a particular class (capitalist) or section of society is questioned to keep the majority in a sub-human position.

He shared these books with Ismail and Abraham too. The friends began to think seriously about what the self-help group formed of persons with disabilities could do in order to lead a life of dignity. Apart from access to basic services, education, employment, persons with disabilities had other needs and aspirations like being able to get married and have a family, participate in social and religious functions, participate in governance functions and contribute to decisions that affect their lives. In fact, he read on the Internet that the latest Guidelines on Community-Based Rehabilitation (2010) and the World Report on Disability (2011) emphasised the empowerment of persons with disabilities and their organisations.

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Somnath’s Story – Script of a skit for forming Vision and Mission

Characters

  1. Somnath – non-disabled person

  2. Boss - of MNC company

  3. Rejina – woman with disability

  4. Mother of a visually impaired boy

  5. Amol – Somnath’s friend who is visually impaired

  6. Kishore – Somnath’s friend who has locomotor disability

SCENE I

This year Somnath has passed M.A. He has got a job in a private company. One day something happened which made Somnath very sad and he left the job. Let us see what had happened.

Somnath: Good morning, sir!

Boss: Good morning! How are things going on? Within a short time you have picked up very well. If you want to know something, please don’t hesitate in asking me.

Somnath: OK, sir! Thank you very much for your support.

Boss: Rejina, what’s the matter? Have you finished your job?

Rejina: No, sir. It will take a little more time.

Boss (grumbling): You always say that it will take “a little more time”. It is almost a year now. When will you finish the job? Because you are handicapped, I have given you the job. This does not mean that you should take advantage. If you don’t want to do this work, you can look for another job. I can’t waste money on you.

SCENE II

Somnath (Speaks aloud to himself): It seems that the persons with disabilities are not human beings, they don’t have any respect. When I was in college, I had two friends Amol and Kishore. Amol was visually challenged whereas Kishore had difficulty in mobility. I used to read aloud the newspaper and books for Amol. No! Where people are not respected, it is not possible for me to carry on in this job.

When I was in school, persons with disabilities were not treated like this. Then why are they treated like this at the workplace?

SCENE III

(Somnath left this job and now works with a voluntary organisation working on women and child health. He is conducting a survey in Gongadharpur village)

Somnath visits a family on one of his field trips

Somnath: Sister, how many children do you have?

Mother: I have only one son and he is visually impaired.

Somnath: Does he go to school?

Mother: Sending him to school is beyond our capacity…we cannot even manage two square meals a day. Moreover, the school is located very far and we have limited access to public transport.

Somnath: Are there any other persons with disabilities in this village?

Mother: Yes, there lives a lame person at the end of the village.

Knowing the actual situation of the persons with disabilities, Somnath decided that he would discuss with his two friends, Amol and Kishore, and they would be able to decide how a change could be brought about in the lives of persons with disabilities.

SCENE IV

(Somnath is discussing with his two friends Amol and Kishore. He tries to understand the present situation of persons with disabilities)

Kishore: There is 3% reservation for the persons with disabilities in every field, but we are not able to get any benefits.

Somnath: Then what do you suggest?

Amol: Let’s do one thing. Let’s take the opinion of all other persons and children with disabilities and form a group.

SCENE V

(The three friends through a survey get the details of the number of persons with disabilities in the nearby villages. They discuss with them and prepare an action plan)

Somnath: Listen, through surfing on the Internet and reading books, I have been able to gather some data on the rights of persons with disabilities. Studying the United Nationals Convention on the Rights of Persons with Disabilities (UNCRPD), National Trust Act, Mental Health Act and PWD Act 1995, I came to know, that the persons with disabilities have the following rights:

- Right to marry and maintain a family

- Right to earn and lead a dignified life

- Right to education

  1. Right to participate in religious and other social occasions.

The change in the society that we would like to see is an inclusive society, where every individual, especially the people from marginalised sections, get equal rights and opportunities. If this is our objective, how can we reach the goal?

Amol and Kishore: We shall go to the villages, form groups in each village of all the poor persons with disabilities and work to enhance their socio-economic condition and work towards ensuring their rights.

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Alpa’s Story – Script of a skit for forming Vision and Mission

Characters

  1. Alpa – Non-disabled person

  2. Pratap – a person with visual impairment

  3. Daxa – a person with locomotor disability

  4. Owner – owner of the tea garden

  5. Director of non-government organisation

  6. Commissioner of persons with disabilities

  7. Director NAB, Mumbai

SCENE I

(College Campus)

Daxa: Good morning, Alpa. How are you?

Alpa: Good morning, Daxa. What is going on?

Daxa: Nowadays there is an election environment. Everyone is talking about politics.

Alpa: You are right. What do you say? Who will win?

Daxa: Seeing the environment I feel Bharatiya Janata Party (BJP) will win.

(Pratap walks in singing a colloquial song)

Alpa: Oh ho! ….Pratap you seem to be in college mood.

Daxa: It is true. But, Pratap, how are your studies going on?

Pratap: Nothing special, if someone reads aloud then only will I be able to listen and prepare for the exams.

Alpa: Not like that, Pratap. Whenever you want to study let me know, I will read aloud for you.

Pratap: Thank you, Alpa. Could you read this magazine for me please!

Alpa: Yes, yes, why not? Let me read it for you. (Alpa begins to read out the magazine)

Alpa: Pratap, don’t feel shy! Next time when you want to listen please feel free to say so.

Pratap: Many many thanks, sister!

Alpa: There is no need to say thanks, this is my duty. Oh, yes! I forget to tell you one thing.

Pratap: Alpa, what is it about?

Alpa: There is a tea garden nearby and I have got a job there. I am joining it tomorrow.

Daxa/Pratap: (together) congratulations, sister!

Alpa: OK. Now please excuse me as I have to prepare for tomorrow. We will meet next Sunday…Good-bye…

SCENE II

( O ffice of the owner of the tea garden)

Alpa: May I come in, sir!

Owner: Come in! Please sit!

Alpa: Sir, I have come to join work from today onwards

Owner: OK, I will brief you about what you have to do. You will be provided accommodation and as per rules you will get a salary of Rs.20,000/- per month.

Alpa: Right, sir, what would be my role and responsibilities? Also let me know the company’s rules and regulations

Owner: You have to supervise the labourers in the tea garden, disburse the weekly wages and maintain their logs. The key points to be considered while disbursing the daily wages are:

  1. If a woman comes with child/or children then pay only Rs.60/-

  2. Rs.50/- to be paid for children below 16 years of age

  3. If the person is absent then wages are to be deducted

  4. No breaks should be given during working hours except for a brief one for lunch

If you have understood the rules properly then you may join us today.

SCENE III

(A year passes and all friends meet once again)

Alpa: Today is Sunday. So I thought that we could all meet.

Alpa: How are you Daxa and Pratap?

Daxa/Pratap: Yes, everything is fine. How is your job?

Alpa: Pratap, what should I say? I have no problem in my job, the salary is good with accommodation, but I feel very sad to see the condition of the labourers. Their situation is very pitiable.

Daxa: Why, what is the problem?

Alpa: What should I tell you, Daxa? Labourers are already being paid poorly and they are also not being paid the stipulated minimum wage.

Pratap: Then what is the confusion? Talk to the owner about the condition of the labourers and discuss how their situation could be improved.

Alpa: Pratap, the owners are exploitative and not willing to hold a dialogue. I feel uncomfortable to see the labourers in this condition. I feel very sad for them and I may leave this job soon. I have applied at other places. I have received a call for an interview, if I get that job I will leave this. OK then, bye, see you. (All the friends say bye to each other)

SCENE IV

(Office of the NGO)

Alpa: May I come in, sir?

Director: Yes, come in! Please take a seat.

Alpa: Thank you. Sir, I have applied in your organisation and so I have come to meet you.

Director: After seeing the resume I see that you have some work experience. But here the work is different. You have to work on health and nutrition. Our branches are all over India, so you have to visit various cities like Kolkata, Mumbai, Ahmedabad, Delhi, Bangalore, etc. We may not be able to give you a high salary. If you are willing then you can join tomorrow.

Alpa: OK sir! I will join tomorrow. Thank you, sir.

SCENE – V

(All friends meet after a week)

Alpa: Daxa and Pratap, how are you? Are you fine?

Daxa: Yes, Alpa, I am fine but you look very happy today

Pratap: True, Daxa. Alpa, did you get a new job?

Alpa: Yes, I have got a new job and it is very nice. I am able to visit several cities in the country. During these visits I meet government officials, people in the community and I also come across several persons with disabilities.

Pratap: That sounds good. Now which city will you be visiting, Alpa?

Alpa: Oh, it is good that you reminded me. Tomorrow I have to visit Mumbai so I need to prepare for that. OK then, see you, to…bye….

SCENE – VI

( C rossing the street in Mumbai)

Alpa: (Reading a hoarding on the roadside) Looks like the office of the National Association for the Blind (NAB). This organisation must be working for the blind. I should go and visit it.

Alpa: (Goes inside) Sir, may I come in!

Director: Please come in, what brings you here?

Alpa: Sir, my name is Alpa. I want to know more about your organisation. Your organisation works for the visually impaired persons. What does it do?

Director: Firstly, you are welcome. Secondly, the name of our organisation is National Association for the Blind (NAB). We work for all types of persons with disabilities. First, we conduct a survey of children with disabilities residing in a particular area, then arrange for their certification. We then provide them with basic assistive devices and work out a plan for their education.

Alpa: But, sir, all these facilities are easily available to children with disabilities in the city. But the condition is pitiable for poor children with disabilities in the villages. Why is this so?

Director: Look, sister, there are limited resources at the village level. There are no skilled teachers. Because of this poor persons with disabilities are denied access to education and live in a pitiable condition.

Alpa: Sir you are right, but after the child is educated who will provide it with employment?

Director: Sister! You may read the PWD Act 1995, where 3% reservation is provided for persons with disabilities in education and employment.

Alpa: Sir, you have shared very useful information about the Act, I was unaware of this. Thank you for this and may I now take your leave?

SCENE – VII

(The friends meet 15 days later)

Daxa: Oh….It is 10 o’clock, why haven’t Pratap and Alpa come?

Pratap: Please forgive me, Daxa, as I am little late today.

Alpa: I am also late as I got stuck in the traffic, but I have some good news for you.

Pratap: Good news? Tell us fast!

Alpa: I had visited NAB Mumbai where I got information about the PWD Act 1995 under which there is 3% reservation for jobs for persons with disabilities in the government. Therefore both of you could apply for relevant posts and attach your disability certificate with it.

Daxa: Sister, I have applied at many places but have not yet been able to get a job. But as you are insisting I will apply.

SCENE VIII

(The friends meet after a month)

Alpa: Did you apply Daxa, Pratap?

Pratap: No, sister, still we haven’t got a chance. Let us apply to the District Education Officer, Collector and Sachivalay (State Government Offices located in State headquarters).

SCENE IX

(After one month)

Daxa: Pratap, I have got the job. What about you?

Pratap: No, sister I have not yet got a job anywhere. Alpa, you were saying one can get employment according to the PWD Act.

Alpa: Pratap, don’t get disappointed, have faith.

Pratap: What? Faith?

Alpa: Yes, Pratap! We will go with an application and meet the Commissioner who is specially appointed for persons with disabilities.

Pratap: Sister, will you accompany me?

Alpa: Why not, Pratap? Let us also include a few other persons with disabilities and meet the Commissioner of Persons with Disabilities.

SCENE X

(Office of the Commissioner for Persons with Disabilities. Pratap and Alpa enter the office with several other persons with disabilities)

Pratap: sir, good morning! May we come in?

Commissioner: Yes, please come in. Please have a seat. What makes you visit us?

Alpa: Good morning, sir! My name is Alpa and this is my friend Pratap. There was an advertisement regarding 3% reservation in government jobs. He has applied for it but he has not got a job till date. So we all persons with disabilities request you to file his case and ensure that Pratap gets a job.

Commissioner: I will note down the details and keep you informed.

Pratap: OK, sir thank you!

SCENE XI

(Pratap gets a job after 2 months and the 3 friends meet again)

Alpa: Pratap, many congratulations to you!

Daxa: Many congratulations, Pratap. We must have a party now!

Pratap: Why not, definitely! I will give a party when we meet next time. Don’t worry Daxa.

Alpa: OK, bye, we will meet next time.

SCENE XII

(All three friends meet again after a week)

Daxa: Pratap, you have not forgotten the party?

Pratap: No way, sister, today’s lunch is from my side.

Alpa: Good, Pratap. This all will continue. But first both of you let me know if any of you are facing any problems in your job.

Daxa: There is no specific problem. But because of my leg I find it very difficult to climb the stairs for taking classes.

Pratap: Sister, I am not able to see, even then I am asked to work on the computer. I also face a problem while going from one office to another.

Alpa: Pratap and Daxa, we face problems even though we are aware about the Acts and our legal rights, but the persons with disabilities who live in remote areas and are from poor families are completely ignorant about their rights. I feel very sad when I think of them.

Daxa: Sister, then let us work together for them. What should we do so that they face less problems and humiliation.

Pratap: Yes, sister, what you say is true. Brothers and sisters like us should live a dignified life. Let us try to work together.

Daxa: I feel that first we have to identify such individuals in the community.

Pratap: True! First we should find persons with disabilities from our taluka/block/province. Let us find out what problems they face.

Alpa: OK! Let us begin working from tomorrow onwards. We will meet again on Sunday with our findings.

SCENE XIII

(All the friends meet after a week)

Alpa: Welcome, Pratap, please come Daxa, tell me what you were able to find out. Were you able to identify other persons with disabilities during the week?

Pratap: Sister, I found a girl with hearing impairment. She is not going to school.

Daxa: I also found an 8-year-old girl with visual impairment and 2 other children with cerebral palsy who are going to school.

Alpa: I also found 3-4 persons. Most of them are not going to school and work at home only.

Daxa: When I see these children I feel very sad. Let us do something about this.

Alpa: You are correct. We feel sad to see persons with disabilities being isolated and confined to the house. The family is interested in getting some benefits from them but is not interested in improving their condition.

Pratap: We should think of a way by which persons with disabilities are able to lead a dignified life in society.

Alpa: I feel happy that the two of you are committed to this issue. Don’t be disappointed. I have to attend a conference in Delhi after two days. This conference is on disability. I will get more and new information then we will discuss further.

Daxa: OK, we will meet once again, bye….

SCENE XIV

(All friends meet after the Delhi conference)

Pratap: How are you, Daxa? How are you Alpa?

Daxa: Good, Alpa. How was your conference at Delhi? What new things did you learn?

Pratap: Yes, sister, we will talk about what all I learnt.

Alpa: Be patient, I will share everything. The PWD Act 1995 is for persons with disabilities and is ratified. Also India has signed an international treaty called the United Nations Convention on Rights of Persons with Disabilities (UNCRPD). Over 150 countries have ratified this.

Pratap: Sister, what is the benefit of this UNCRPD?

Alpa: This is a unique convention that has changed the understanding about disability. Disability is no more considered a disease to be cured. It is as a result of social, cultural, political, physical and environment barriers in society.

Daxa: You have provided useful information.

Alpa: Listen, I found some more information on the website about Prof. Michael Oliver who has written two books called ‘The Politics of Disablement’ and ‘Understanding Disability from Theory to Practice’. Through these books we get a new understanding on the issues faced by persons with disabilities. They are not recognised as the citizens of the country are denied the right to vote due to barriers in the environment. As they remain confined within the home they are not considered a vote bank.

Pratap: You have collected very good information. Please give these books to us to read also.

Alpa: Sure, I have brought these books for you too. Please read them carefully.

SCENE XV

(All meet again on the following Sunday)

Pratap: Alpa, are you fine? Come in, Daxa.

Daxa: Yes, I am alright. Alpa, we read the books given by you and have come to know many things. I feel that if persons with disabilities find it difficult to get employment then we should work on employment.

Pratap: I feel that people are finding it difficult to get married and set up a family. We should set up a marriage bureau.

Alpa: What you say is correct but, first their basic needs should be fulfilled. They should be able to go to school, be gainfully employed and be able to live independently. Together they will be able to demand their rights and be accepted /respected in society.

Daxa: For this we should start from the home

Pratap: What if we gather some persons with disabilities?

Alpa: I agree with both of you. I feel first, we should register an organisation for children with disabilities and understand their problems, review them collectively and then plan for their rehabilitation.

Pratap: This sounds perfect. Let us make preparations to call the parents of children with disabilities.

Alpa: But we must also remember that the final aim is to empower persons with disabilities so that they can demand their rights and lead a dignified life.

SCENE XVI

(Meeting with parents of children with disabilities)

Alpa: I welcome you all in today’s meeting, with all of your children, family and friends. Let us all discuss the difficulties / issues faced by you. We will definitely try and guide you.

Parent no.1: Whatever you say is true but my child is blind and if we go to work who will take care of our child?

Pratap: Look, brother, even I am not able to see but still I am working. You can see that I have a walking stick to see the whole world with its support and we will provide your children with mobility training so that they can go out alone and come back home from school

Parent no.1: But, sir, when he is not able to see how will he write his exams?

Pratap: Look, there is no problem if he can’t see, he can speak so he will get the facility of a writer/scribe with 30 minutes extra to finish his paper.

Parent no.1: All this is fine. If my child will be able to study then it will be beneficial but what is the benefit of so much of expense on education.

Alpa: Listen brother, what you are thinking is incorrect. Do all able bodied persons get a job? For persons with disabilities there in 3% reservation provided in the public sector and government jobs and if he/she is educated then he will get a job, or he can stand on his own feet by undertaking vocational training.

Parent no.2: My son has difficulty in his leg, how will he go to school?

Daxa: Look, brother, I have difficulty in my leg but I have studied and today I also do a job and I fulfil all the needs of my family members. If your child has some problem in his legs we will provide calipers and there are many hospitals that will be able to do surgery free of cost. So we could seek medical advice.

Parent no.3: Well, it is fine for these children but what about my son? He is deaf and dumb? What will he do by going to school?

Alpa: Sister, your son is not able to hear and speak. So it does not mean that he doesn’t have a brain. Hearing machines/aids are available for people who are not able to listen. If training in sign language and speech therapy is given to him then he will be able to communicate.

Parent no.4: My son is teased in school and everyone calls him mad.

Daxa: See, sister, for this also we begin from our house. First, we need to change our perspective. The necessary things in life should be taught according to the needs of the child.

Parent no.5: Sister, the doctor has said that my daughter has cerebral palsy, she can’t hold her pen also. How can she read or write?

Pratap: Sister, doing daily exercise will be beneficial. There is a pen available to write fast. With this a good grip will be there. And nowadays in this computer age objective-type questions are asked which are required to be ticked only.

Parent no.1: Brother these are our fingers and they are like eyes to us. We can write with Braille, can read Braille books, do mathematics problem through this mathematics slate, can do science experiment, we can learn through C.D players, we get a writer to write papers. We only need to speak while a writer will write for us.

Parent no.3: You are suggesting that persons with disabilities should study. But what after their education?

Alpa: Your non-disabled children may not be able to get a job but persons with disabilities may easily get a government job as per 3% reservation. They can be self-employed by undertaking vocational training.

Parent no.5: Sister, we all are thankful to you all for providing this information for our children; we will definitely send our children to school. If any guidance is required, we will approach you. Thank you very much.

Alpa: I thank you all for being present and participating in this meeting. Thank you all very much. We will be conducting such meetings in the future and will also try and address the various issues faced by children/adults with disabilities. Together we will try to find a way out. I hope that we meet again. (The group disperses)

(Alpa, Pratap and Daxa decide to continue meeting the parents of children with disabilities and also meet other persons with disabilities and evolve concrete activities of intervention)

Explanation of VISION

Explanation of MISSION

Examples of vision and mission statements from the case study above

Vision: Empowering persons with disabilities

Mission: Persons with disabilities network with other groups / other stakeholders to advocate and lobby for equal rights and access to health, education, livelihood and social inclusion within the family, community and government

Vision: A disabled friendly society where all persons have access to government services and live a respectful and barrier free life

Mission: Groups of persons with disabilities claim their citizenship rights and entitlements

Vision: A progressive and economically empowered marginalised section including disabled persons enjoy their rights and entitlements

Mission: Promotion of access to inclusive primary education, access to employment opportunities and space for political participation for persons with disabilities and other marginalised sections of society

Vision: Equal opportunity, equal rights and equal participation for person with disabilities to lead a dignified life

Mission: The situation of persons with disabilities is improved by organising groups and access to basic services of health, education and employment to lead a dignified life

Vision: Barriers in society are eliminated so that persons with disabilities lead a dignified life

Mission: Associations of persons with disabilities collectively participate in the processes and decisions that affect their lives

Vision: Persons with disabilities lead a life free of discrimination

Mission: Participation of persons with disabilities in education, employment, religious, social and cultural aspects is enhanced

Vision: Persons with disabilities (male and female) get equal right to live in the community without discrimination

Mission: Persons with disabilities are rehabilitated and their social and religious status is enhanced

Vision: All disabled are alleviated from poverty, injustice, exclusion and discrimination

Mission: Organisations of persons with disabilities are empowered to collectively demand their rights and entitlements

Vision: Persons with disabilities are self-reliant

Mission: Enable persons with disabilities to fight against injustice and access equal opportunities

Vision: Persons with disabilities have equal rights on an equal basis with others

Mission: Capacity building of groups of all types of persons with disabilities in rural areas at gram panchayat level to collectively demand for their rights and entitlements

Vision: All persons with disabilities lead a respectable life

Mission: Create disabled friendly learning environment and employment opportunities for all persons with disabilities

Vision: Each and every person with disability enjoys citizenship rights to lead a happy and responsible life.

Mission: Enable persons with disabilities to be self-reliant through training and capacity building

4.4 Session Plan and Facilitation Note – Collectivising the Vision and Mission of DPOs

Time: 4 hours

Method: Group discussion

Material: Flipcharts, markers

Objective:

1. Collectively form the Vision and Mission of the DPO

2. Understand the process of forming the Vision and Mission of the DPO with the members at the grass roots

Process:

Facilitator’s note:

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Examples of Vision and Mission S tatements of DPOs

Karnataka Angavikalara Rajya Okkuta (KARO)

Vision: In a democratic set-up all the citizens with disability have access to holistic development, opportunities; lead a dignified life on an equal basis with others

Mission:

Annai Theresa Disability Development Trust

Vision: All persons with disabilities enjoy their citizenship rights on an equal basis with others to lead a dignified life.

Mission: Groups of persons with disabilities to network and advocate with other Community-based Organisations (CBOs) and stakeholders access to inclusive education, health, employment along with their citizenship rights in Pudukottai district of Tamil Nadu.

Uttar Pradesh Viklang Manch

Vision: A barrier-free, equitable society, wherein persons with disabilities have equal opportunities to education, health, livelihoods and are mainstreamed in society. 

Mission: Empower persons with disabilities through capacity building at the State level so that they are able to advocate their rights and entitlements.

Disability Rights Group

Vision: An inclusive society with equal rights, opportunities and respect for all

Mission: All people have the right to accessible transportation, aids and appliances, employment and civic facilities

National Association for the Blind

Vision:

Mission:

Rajasthan Viklang Manch

Vision: An inclusive society where persons with disabilities lead a life free of injustice, poverty and exclusion.

Mission: Create awareness on citizenship rights among persons with disabilities and mobilise them to fight against injustice, exclusion and poverty in Rajasthan

Madhya Pradesh Viklang Manch

Vision: Persons with disabilities become independent and lead a dignified life.

Mission: Form associations of persons with disabilities by building their capacities, raise awareness about citizenship and mainstream disability through a political process in Madhya Pradesh

Disability Advocacy Group, Gujarat

Vision: Persons with disabilities are living a life of dignity at all the levels in society

Mission:

4. 5. Structure of an Organisation

4.5.1 What is the Structure of an Organisation (Reading)

An organisation’s structure describes its formal framework or system of communication and authority. Just as humans have skeletons that define their shapes, organisations have structures that define their shape. Structures are designed in organisations so that the stated goals are effectively achieved.

As a structure the organisation is the network of horizontal and vertical relationships among the members of a group designed to accomplish some common objectives. The horizontal dimension depicts differentiation of jobs into departments or divisions. The vertical dimension reflects the hierarchy of authority relationships with a number of levels from top to bottom.

A sound organisation structure design and practice has the following advantages:

Forms of Organisations

Functional Organisations:

Functional organisation puts individuals to work on the same function. For example, all the service delivery extension workers, or researchers, or administrative staff can be grouped together to form a work unit.

Example: The Executive Director is on the top with different units or groups under it like Research, Administration, Service, etc

Sectoral or Thematic Knowledge/ Skill-Based Organisations:

Sectoral or thematic knowledge/skills-based organisations put individual to work on the same sectoral or thematic knowledge/skills/and or discipline. For example, an organisation working on health, education and natural resource management can group all the individuals working on health in one work unit and likewise the education, natural resource management and so on under the Executive Director.

Constituency (Client/User)-Based Organisations:

People who are performing different activities and producing different output might be grouped together because they all service the same constituency or user or client. Different clients may use a service in different ways or require different types of services. For example, an organisation working on health may group its work units for children or women or men.

Geography or Location Based:

The organisation can group its resources by geographic location, i.e. where the target group is located. For example, an organisation can do similar kinds of function in different geographical locations like East, West, South. In each location there will be different units like Research, Administration, Service Delivery etc.

Multiple Foci or Matrix-Based Organisations:

Organisations with multiple foci are sometimes labelled as matrix organisations. Some competitive environments or organisation strategies require focus along several dimensions simultaneously. For example, an organisation might choose to organise the work unit by function and by sectoral/ thematic discipline. In this fashion, the organisation could maximise sectoral/ thematic competence as well as functional integrity.

Making Decision about Organisational Form

There is no optimal organisational form; each has its own strengths and weaknesses. How, then, does one make the decision about organisational form? The most central function of an organisation’s structure is to help the organisation attend to and deal with critical contingencies, and the primary factor in choosing organisation form is an organisation’s strategy.

At the organisational level of analysis, the choice of form should be based on critical strategic contingencies and key success factors. Strategy needs to drive the choice of organisation form. The organisation’s strategy should set the focus for all grouping decisions. Strategy should be derived from an assessment of competitive environments, organisational resources, and the organisation’s unique history. Strategy sets organisational priorities and dictates which issues and concerns need to be managed most closely. For example, if environment is uncertain, competition stiff, and fundamentally different client needs are identified, one might organise around user/client. If, on the other hand, innovation in certain service niches is of utmost concern, then it might be most effective to organise around output. If the most pressing strategic issues are cost and efficiency, then grouping by activity or function might be most appropriate. For any one strategy, management must weigh the strengths and weaknesses of the several choices of organisation form and choose that organisational form option that is most congruent with organisation’s strategy.

At the sub-unit level, choice of unit form must be driven by unit objectives. Again, the choice of sub-unit objectives should reflect competitive contingencies and environmental uncertainties. The choice of unit form should be consistent with the organisational strategies.

While the number of basic grouping options is limited, many combinations of forms can exist in one organisation. For example, the top level of an organisation might be organised by sector/theme, the next level by function, and the third level by user/client. The grouping decisions made at the top of the organisation are most critical because they constrain the configuration of the rest of the organisation. The complexity in organisational form will hinge on the complexity of the organisation’s strategy and its competitive environment. The greater the strategic and competitive complexity, the more complex the organisation must be to handle the different strategic contingencies.

*This write-up is an abstract from the article prepared by PRIA (New Delhi) adapted from Nadler, David and Tushman, Michael. 1988. Strategic Organization Design: Concepts, Tools, & Processes; Scott, Foresman and Company, Glenview, Illinois; London, England.

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4.5.2 Session Plan and Facilitation Note: Structure of an Organisation

Time: 1 hour

Method: Group discussion and lecture

Material: Flipcharts/whiteboard, markers, Reading on What is the Structure of an Organisation

Objective:

i. Understand the benefits of the structuring of an organisation

Process:

Facilitator’s note:

Example of Structure 1

In this on top is the State Level Unit of the Federation. Under this there are various themes like health, education, livelihood, social and environmental. Below this are the district level units with this respective staff/volunteers.

Note: Each district unit will have one Director, one Coordinator and three field workers

Note: To run such a huge structure, a lot of money is needed and group members have to think from where the Federation will arrange this amount. It has been found that this group considered the first two points, i.e. coordination and reporting but if needs to think about the use of limited resources and manpower.

Example of Structure 2

In this example the State Level Office is in the Centre of a circle surrounded by other small circles representing different units livelihood, health, education, empowerment, social.

Note:

Example of Structure 3

In this example the Chief Coordinator is located at the State Level. Under this are the different sectoral units like health, education, livelihood, social, empowerment, accessibility. Below these are the district units of each of these thematic ‘units and below this are the block level units.

Note: All this will run on a voluntary basis

SCOPE AND APPLICABILITY

In this module, stress has been laid on how to collectivise the process of formation of the Vision and Mission of an organisation or a DPO. The Vision and Mission define the purpose of the organisation. In this module too the case study method has been used for enabling the participants to define Vision and Mission statements and conceptually understand the difference between the two. The case study has been adapted into simplified versions and scripts of two skits have been prepared as this would be useful for persons with visual impairment. The case study could be explained to the hearing impaired by breaking down certain words with day-to-day example. The case study and skits have been prepared in the Indian cultural context hence, region-specific case studies and scripts of skits could be evolved once the concept and principle is clear. For persons with visual impairment familiar with Braille, the print formats of the case and skits will be relevant.

Examples of Vision and Mission statements from study as well as of various DPOs that have emerged out of this process have been inserted to enable other DPOs or disability organisations to develop and define the purpose of their organisation.

There are some flow charts in this module and tactile prints of these could be taken with the text in Braille. The text of the boxes could be inserted separately by numbering the boxes so that persons with visual impairment are able to comprehend the components of an organisation as well as different forms of the structure of an organisation.

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5. TRAINING FOR CAPACITY ASSESSMENT BY DISABLED PERSONS ORGANISATION’S (DPOs)

In this training on capacity assessment by DPOs an attempt has been made to simplify the tools for capacity assessment by disabled persons organisations (DPOs). It is however essential to do a recap of the previous two phases in order to make a more realistic capacity assessment. The first tool is a simplified version of Marvin Weiseboard’s Six-Box Model of diagnosing a organisation. The Six-Box Model focuses on the six most important elements of an organisation – Purpose, Structure, Helpful Mechanism, Relationships, Rewards and Leader. A set of simplified questions has been developed which could be used for discussion in small groups and then consolidated in the larger group for the organisation. Some examples have been given with the facilitator’s note for older and newly - formed DPOs.

The second tool is on SWOT analysis (Strengths, Weaknesses, Opportunities and Threats) that could be used after using the above tools to devise strategic directions of the organisation. It has been found that for this the participants need to be clear about the environmental or situational analysis, specially clarity is required on the opportunities and threats. A brief lecture could be arranged to be given by an eminent person in the disability sector.

The third section is about Job Analysis or articulating the job specification of the office bearers of the DPO. Most of the times, due to lack of clarity among the office bearers, some perform their roles and take on additional responsibilities and others may not perform due to overlapping roles and lack of clarity between persons at similar posts.

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5.1 Workshop Design (Suggested)

Spend at least two hours on recap of the previous two trainings as clarity is required on environmental or situation analysis and the purpose of the DPO. In this way if new members have joined in any of the phases then they would also understand the processes and be able to absorb the processes of the current training.

SIX - BOX MODEL OF CAPACITY ASSESSMENT

Time: 8 hours

Method: Small group discussions and large group discussions

Materials: Flipcharts, markers, Reading 7 on Six-Box Model and Handout 4 on Questions for group discussion

Objective:

The participants from the respective DPOs will be able to collectively assess and articulate their capacity, identify the gaps and means to address the gaps within their institution

SWOT ANALYSIS

Time: 2 hours

Method: Group discussion

Materials: Flipcharts, black/white board, markers, relevant visuals for explanation and Reading 8 on SWOT Analysis

Objective:

JOB ANALYSIS

Time: 2 hours

Method: Large group discussion

Materials: Flipcharts and markers

Objective:

5.2 SIX-BOX MODEL FOR CAPACITY ASSESSMENT OF THE DPO

5.2.1 The Six-Box Model (Reading)

The six-box model is a diagnostic framework developed by the American analyst Marvin Weisbord to assess the functioning of organisations and for diagnosing organisational problems. It is a generic framework and is intended for use across a wide variety of organisations. It is based mainly on the techniques and assumptions of the field of organisational development. The model represents a particular way of looking at organisational structure and design. It gives attention to issues such as planning, incentives and rewards, the role of support functions such as personnel, internal competitions among organisational units, standards for remuneration, partnerships, hierarchies and the delegation of authority, organisational control, accountability and performance assessment. The model also follows the basic 'systems' approach to organisational functioning, including the well-known inputs and 'outputs' categories. The six-box model comprises the following components (boxes):

Elements of the Six-Box Model

Purpose: 

What 'businesses' are we in? What are our mission and goal? Are the members of the organisation clear about, agree with and support them?

An organisation’s purpose emanates from a negotiation between what we want to do (our belief systems, values, competencies, etc.) and what we have to do (based on external demands and survival needs, etc). This helps determine the organisation’s priorities. The agenda may change from time to time based on resolution of issues taken up. Defining the purpose helps an organisation to cope with uncertainties and help develop a unique identity for it, one that becomes its distinguishing feature. Based on the purpose, an organisation designs its programmes to translate it into action. In the absence of a clearly stated purpose, an organisation cannot be expected to perform coherently and effectively.

Hence it is important to review:

To assess this aspect:

If there is little clarity or agreement of members with the stated mission or the mission is not relevant to the external environment, it requires a review and rearticulation.

Structure: 

How do we divide the work? How is the organisation organised?

Are people divided by the function they perform, with specialists working together to perform one function or are they divided to form multi-skill project or programme-based teams? Does the way we are organised help in achieving our goals/mission?

Organisations decide on their structures based on their purpose. Each has its own pros and cons. Organisations may organise themselves by (a) the different functions they perform (research and advocacy, service delivery, manufacturing aids and appliances, etc.) or (b) the programmes and projects they undertake, using multi-skilled teams or (c) a mix of these.

Function-based organisations consider ‘special competence’ for their functions important; functional goals are accorded a higher priority than organisational goals; few members have an idea of the ‘whole’ picture; members have the scope to optimally perform what they are good at, leaving general coordination to others. Such organisations resist a rapid change.

Programme/project-based organisations are more suited to fast-changing environments and technologies. Members perform multiple tasks to address the issues of a programme or project. In such structures, teams are more likely to get an idea of the ‘whole’ organisational picture; members have the possibilities of performing a wider range of functions and developing varied skills. On the other hand, in-depth competence is difficult to achieve in such teams. Inter-group conflicts are not as high as in function-based organisations.

Mixed organisations are more flexible and have the scope for using and developing special and generic skills and can shrink or expand with need. They require innovating and adapting new procedures and norms. Such organisations require two sets of budget lines, dual reward systems, etc. and are expensive to manage. It is important in such set-ups that the project group has its own budget, its goals are tied to the organisational mission and both functional and programme managers enjoy similar authority.

Relationships: 

What are the relationships between people, departments /programme teams and between people and the nature of their work? Do people/units function independently or, if there is interdependence, what is its nature? What are the sources of conflict? How do we manage conflict (coordinate) among people?

It is important to understand how much interdependence is required to achieve the goals/mission. There may be situations where people do not collaborate where they should or try to collaborate even if it is not required. Both these are dysfunctional. Also, it is useful to review the degree of conflict between teams, e.g. conflict between the finance and programme teams is common and inevitable as both have different ways of looking at things and different parameters of what they consider useful output. Such conflicts need to be managed by putting in place effective coordination mechanisms. Relationships are most critical in organisations that require interdependence between teams for the achievement of the goals/mission. It is important that they positively contribute to the self-esteem of individual members.

Some normally used informal styles of conflict management include forcing where the more powerful win, pretending or not according importance to existing conflicts, avoidance, bargaining or negotiating for personal advantage and confrontation. In situations where interdependence is high and the quality of relationships is low, the existing conflict management styles are likely to be inappropriate and need to be revisited. It may be necessary to identify and give responsibility to some people for conflict resolution, helping such persons to develop their conflict management skills, and/or setting up formal mechanisms such as monthly meetings for problem resolution.

Rewards: 

Is there an incentive for doing all that needs to be done ? What rewards does the organisation give? What are the rewards, both intrinsic and extrinsic, that people consider important to their work? Is there a discrepancy between the members’ expectations and organisational provisions? What does the organisation need to do to fit with the environment?

Formally rewarding individuals in no way guarantees people will appreciate it. Meeting the basic needs, viz. physiological, safety and belongingness (interpersonal supervisor relationships, working conditions, organisation’s policies, etc.) is necessary for boosting the morale but not sufficient to motivate people to creatively perform tasks. Such motivation comes if there are opportunities for personal growth, recognition, assuming responsibility and a sense of achievement. The latter contributes to enhancing the fit between people and the organisation. A reward system that offers fringe benefits and salary alone may not be adequate if their work is not valued and they do not see that it offers an opportunity for them to grow. Another point is that peer-approval and respect that the team informally offers to the individual also plays an important role in motivating individuals.

Leadership: 

Is someone keeping the boxes in balance? Do the leaders consciously define and pursue the goals and missions and clarify these in the programmes they manage? Do they manage conflict and defend the organisational integrity? What is the normative style of leadership pursued – participative or autocratic? Do the leaders have a task or relationship orientation?

Effective leadership requires balancing between tasks and people functions. Leaders need to learn how and when to solicit feedback and how to use it. Leaders need to understand the organisation and its requirements and then assess the extent to which their styles and norms hinder or facilitate meeting these requirements and the extent to which new skills can be learnt to address the gaps. Leaders need to assess the formal and informal problems in all the boxes and take corrective action. This can be a shared responsibility, especially in functional organisations, where specialists are focussed mainly on their own tasks and not responsible for the organisation as a whole. It is important for leaders to be able to identify the areas that are problematic and their impact on the organisation. This calls for periodic and systematic monitoring and tracking as well as initiating corrective action.

Helpful Mechanisms: 

Have we adequate coordinating technologies? Are our planning, control, budgeting, information and other systems in place? Do they help in achieving the organisational goals/mission or hinder it? What aspects hinder/help?

Helpful mechanisms are those that assist in coordination or integration of work and promote joint, collaborative work; assist in monitoring the organisation’s work to keep track of facilitative or hindering factors and help address problems in any of the boxes for which no existing procedure is adequate. Periodic and regular meetings, open information systems, etc. can help in coordination if they try to do what they are set up for.

Helpful mechanisms may include policies, procedures, agendas, meetings, trainings and formal events that help people work together; informal mechanisms, ad hoc solutions, inventions which are used to respond to problems and are not a part of the formal mechanisms; and the traditional management systems, viz. planning, budgeting, control and measurement (information). Existence of such systems does not automatically guarantee that they will be helpful. It requires both skill and the will of people to use them. Appropriate interventions may be required when existing systems and mechanisms are inadequate for dealing with problems. This requires an analysis of which formal and informal mechanisms are unhelpful and why.

A problem in an organisation can be caused by dysfunctional processes in any one of the six boxes. The problems can be due to flawed structures, poor leadership, poor conflict resolution mechanisms, etc.

Formal and Informal Systems

In addition to the above mentioned six boxes, it is important to examine the formal and informal systems in an organisation, i.e. what is supposed to happen in an organisation, as prescribed formally by an organisation for each of the boxes and its appropriateness to achieving the mission and what actually happens in the organisation based on informal systems and processes that usually emerge to overcome the gaps and deficiencies in the formal system. The wider the gap between the formal and informal systems, the lesser will be the organisation efficiency.

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Six Boxes

1

Purpose

Formal System

Goal clarity

Informal System

Goal agreement

2

Structure

Formal System

Functional, divisional or matrix

Informal System

Work done or not done

3

Relationships

Formal System

Who should deal with whom, and on what? Which technologies should be used?

Informal System

How well do they do it?

Quality of relations?

Modes of conflict management?

4

Rewards and incentives

Formal System

Explicit system

What is it?

Informal System

Implicit, psychic rewards.

What do people feel about pay-offs?

5

Leadership

Formal System

What do top people manage?

What systems are in use?

Informal System

How?

Normative “style” of administration?

6

Helpful mechanisms

Formal System

Budget system

Management information measures planning and control

Informal System

What are they used for?

How do they function in practice?

How are systems subverted?

The formal system can be understood through a review of the organisation’s charts, statements, reports and other documents about how it is organised and how it functions. The diagnosis entails matching this formal system with its environment to see whether it fits. Diagnosing an informal system requires a review of the frequency with which people do certain things in relation to their importance for organisational performance. Such a review will help identify if formal changes are required to change some normative patterns that exist but are not conducive to organisational performance.

Another important dimension to be considered is the environment of an organisation. Each organisation functions within a given environment. It is important that the organisation responds to the external demands/needs of stakeholders/context in which it functions. This refers to forces that an organisation needs to respond to but which are difficult to control from inside. It may be difficult for an organisation to respond appropriately to its environment at all times. However, it is important to know what within an organisation is problematic and needs improvement.

This model will help to rapidly expand the diagnostic framework from interpersonal and group issues to the more complicated contexts in which organisations are managed.

Power Dimensions in Organisations

While using any model, it is important to find out how the results of the diagnosis or identified issues could be converted into actions to be taken. Actions are very much dependent on the central question on who has the ‘power’ or influence on or to take action or the needed changes in the organisation, in the environment in which it is operating and the relationships or stakeholders it is working with. This implies that the organisation must take stock of the influence it has on in the external as well as the internal environment. To take action for initiating change or simply put the ability to do what it wants to do. The sources of power need to be identified and are not necessarily possessed or given but can also be acquired by handling problems in the environment or do tasks that others are not dealing with or performing. Power is used by all individuals or units / departments in an organisation to survive or exist. Power enables an organisation to ally with their realities. This is done by exerting control on critical resources, placing key allies in key positions and defining organisational policies and problems. The processes used to exert influence power determine the ‘fit’ of organisations to their environment or the ‘misfit’.

Those organisations or units that are able to face or adjust with the uncertainties or challenges posed in the environment acquire power. Within organisations power is shared among various persons and units performing different activities. Power is not based so much on the individual but more so on the set of activities performed by the individual or group and is related to the sub-group on which the main group is dependent for completion of the said task or activities. It is very likely that units that contribute to the critical resources of the organisation will gain more influence or power in the organisation. It is this critical influential power centre that bends the course of the organisation’s work in the future. This is, however, not a static position and the power centres within organisations may change, and may change rapidly, with changes in the external environment. The group or unit or leader that continues to adjust to the rapidly changing context will continue to be the individuals or unit to exercise maximum influence and power within an organisation. It may, however, be noted that individuals or groups that are able to retain consistent power or influence in the organisation are able to do so as they are able to retain the belief that they are performing critical tasks even if they may not be doing so.

In summary, Weisbord’s model focuses on internal issues within an organisation primarily by posing "diagnostic questions" which have to do with the fit between "what is" and "what should be." The questions he poses are not predicted by the model; rather, they appear to be based on his OD practice. These questions serve to convolute the model because they do not flow from the logic of the model. Moreover, it omits many interconnections between the boxes of the model. Finally, it addresses the impact of the external environment in the model.

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Steps for Using the Six-Box Model

Part I: Scanning the Organisation

  1. Begin by defining the organisation’s boundaries. List important units and functions of each unit. Identify who is inside the organisation and who is outside.

  2. List 2-3 context/environment-related demands that affect /influence your organisation’s mission (purpose for existence).

  3. What are the inputs (funds/resources, human resource, ideas and materials) that your organisation invests and what outputs (services, ideas, etc.) does it lead to? What are your major sources of feedback?

  4. Identify what makes your organisation unique.

  5. Identify one major output that you wish to examine and use the output congruity matrix (Peter Vaill, 1974) to understand the current situation and gaps. Ask questions like how satisfied are the beneficiaries / target group with the services and how satisfied are the staff members. If the answer is neither cell D then the organisation is in deep trouble. If one is and the other is not either cell B or C then there might be trouble that could erupt at any time.

  6. Identify the area that requires an intervention.

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Part II: Diagnosing the Six Boxes

Diagnosing Purpose

  1. What documents define the purpose of the organisation and what is it defined as?

  2. Examine the stated purpose against the demands and expectations of the target group / community and stakeholders.

  3. To what system the core committee members understand the purpose the way the head or leader of the organisation does and note the points of differences or areas of differences.

  4. Next consider how the purpose might be reframed to offer a better ‘fit’ with the environment to resolve the differences.

Diagnosing Structure

  1. List the different units and functions of the organisation.

  2. Try and identify the type of structure the organisation would relate to, either function based, programme/project based, or mixed organisation

  3. Rate the structure in relation to the ‘fit’ with the environment

  4. Has an attempt been made in the recent past to change the structure of the organisation, if so how and what?

  5. Are there currently any tasks left undone in the organisation? List the undone/ unattended tasks.

  6. Who is attending to the unattended task? What effect is it having on the individual as well as the others?

  7. Go back to the list of demands made by the environment in the previous section. For each of the demands locate who in the structure is responding to it and examine if this response is adequate.

  8. Take one unit/committee/task force in the organisation and examine:

Diagnosing Relationships

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Diagnosing Rewards

Table of Maslow’s Hierarchy

Formal System

Informal System

Need

Personal growth

Esteem

Belongingness

Safety

Psychological

Table of Motivation

Formal Example

Informal Example

Work itself

Responsibility

Achievement

Advancement

Recognition

Table of Hygiene Factors

Formal Example

Informal Example

Interpersonal and supervisor relations

Technical supervision

Working condition

Policies

Salaries

Diagnosing Leadership

  1. Characterise the informal behaviour of the organisation in terms of all the members ‘task oriented’, or ‘relationship oriented’ or both – participative, autocratic

  2. How appropriate is their behaviour to the organisation’s purpose?

  3. Put down the strengths and weaknesses of the leadership norms of the organisation as perceived by the members and list them down.

  4. Rate the extent to which the leadership makes formal attempts to monitor and make the boxes in order (Rate it on a scale of 1-5 from ‘to a great extent’, to ‘no extent’)

  5. Rate the extent to which the formal systems or leadership show an interest in relating formal systems and procedures and how well they reflect in the informal behaviours.

  6. How well is the leadership informed about the environment and what are the helpful mechanisms available for scanning the environment?

Diagnosing Helpful Mechanism

  1. Identify examples of formal and informal mechanism available in the organisation for enabling people to meet and list them down.

  2. Diagnose the management system-both formal and informal – how is it being done, who is in charge, is the mechanism helpful in enhancing co-ordination and is it adequate?

References:

Centre for Youth and Social Development (2003). Organisational Behaviour: A Framework for Non-government Development Organisations by Prem Chadha, Jagadananda and Gayatri Lal

Marvin Weisboard (1978). Organisational Diagnosis: A Workbook of Theory and Practice, Basic Books

5.2.2 Session Plan and Facilitation Note – Six-Box Model

Time: 8 hours

Method: Group discussions

Materials: Flipcharts, markers, Reading 7 on Six-Box Model and Handout 4 on Questions for Group Discussion

Objective:

The participants from the respective DPOs will be able to collectively assess and articulate their capacity, identify the gaps and means to address the gaps within their institution

Process:

Facilitator’s Note:

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EXAMPLES OF SIX-BOX ANALYSIS OF DPOs

Example 1: Karnataka Angavikalara Rajya Okkuta (KARO)

PURPOSE

PROGRAMME: Forming DPOs

ACTIVITIES: Survey of persons with disabilities, Orientation for forming SHGs, Form committees at district level, Conduct meetings, Contact local NGOs, Field visits and correspondence, Marriage bureau

PROGRAMME: Advocacy for Barrier-free Environment

ACTIVITIES: Conduct meetings with government officials and influence for changes in bylaws of City Municipal Corporation regarding accessibility, Advocate access audits at public places and tourist spots, Advocacy for 5% of budget utilisation

PROGRAMME: Advocate Inclusive Education

ACTIVITIES: Advocate access audit in government primary and secondary schools, Advocate with Sarva Siksha Abhiyan (SSA) for doing health programmes for children with disabilities instead of focusing on education only, File RTI applications to check the budgets spent on Inclusive education through SSA, Identification of children with disabilities, provide physiotherapy and other technical support, enroll them back into formal school, School visit and follow – ups, Monitoring of children with disabilities for retention, Advocacy with government to provide special teacher in government schools

PROGRAMME: Creating Awareness (Family and Society)

ACTIVITIES: Press meets, street plays, leaflets, posters, rallies, Protests, Collecting and dissemination of information, Celebration of World Disability Day, Celebrating conventions, Polio awareness programmes, Medical camps, Marathon

Sports and cultural programme for persons with disabilities

PROGRAMME: Capacity Building

ACTIVITIES: Legal literacy/ training, Training on schemes / programmes, Leadership trainings, Consultations, Training on creating barrier-free environment

PROGRAMME: Enhancing Women’s Participation

ACTIVITIES: Leadership training for women with disabilities, Identification of women with disabilities, Stop child marriage

Provide responsible positions to women with disabilities in the DPO, Address violence against women with disabilities

PROGRAMME: Ensuring Entitlements

ACTIVITIES: Linking with government departments, Bus pass, railway pass, pensions, loans, Support travel of persons with disabilities

PROGRAMME: Resource Mobilisation

ACTIVITIES: Write proposals to funding agencies, Approach local people and communicate the work and raise funds, Identification of persons with disabilities and approach government to fund their self – employment, Approach other NGOs to support small events

GAPs in the above listed Programmes / Activities

GAPS

WHAT NEEDS TO BE DONE

RELATIONSHIP

POSITIVE Incident 1 - Election of New Office Bearers

Incident 2 - Local Resources used to arrange 1 st quarterly meeting after a long time

NEGATIVE Incident 1 - Long Gap in conducting KARO meeting

Incident 2 - In 2–3 districts many wanted same post and had a heated discussion

WHAT NEEDS TO BE DONE

To minimise negative impact the following measures need to be taken

STRUCTURE

ENABLING FACTORS

- Helps in coordination

- Facilitate dissemination of information

- Effective implementation of programmes

HINDERING FACTORS

WHAT NEEDS TO BE DONE

HELPFUL MECHANISMS

FORMAL SYSTEM

DIFFICULTIES

INFORMAL SYSTEM

WHAT NEEDS TO BE DONE

REWARDS

ISSUES

WHAT NEEDS TO BE DONE

LEADER

What do you understand by Leader?

What support the leader requires

Do’s

Don’ts

Example 2: Disability Advocacy Group (DAG), Gujarat

PURPOSE

PROGRAMMES

ACTIVITIES

GAPS

STRUCTURE AND HELPFUL MECHANISM

ENABLING FACTORS

HINDERING FACTORS

WHAT NEEDS TO BE DONE

RELATIONSHIP

POSITIVE Incident 1: Managed to get a project for DAG

Incident 2: Training on OD

NEGATIVE Incident 1: Conflict between President and founding members of DAG

WHAT NEEDS TO BE DONE

REWARDS

Publishing of activities by members in the Newsletter

ISSUES

WHAT NEEDS TO BE DONE

LEADER

What do you understand by Leader?

Who is the leader in the DPO?

What support does the leader require to make the institution effective? The group responded as follows:

DO’S

Example 3: Madhya Pradesh Viklang Manch

Purpose

PROGRAMME : Matrimonial

ACTIVITIES: Conduct meeting, counsel the partners, fix the date and place and time, fill form, make a list of things to do/tasks, allocate responsibility, brief the media, invite the dignities

PROGRAMME: Employment Mela

ACTIVITIES: Conduct meetings, meet concerned government officers, fix time, place and date, promote awareness, raise awareness about providing jobs to persons with disabilities according to their skills

PROGRAMME: Mahasabha / Aamsabha

ACTIVITIES: Conduct meetings, list the problems and do analysis and identify issues, meet concerned officers, invite all persons with disabilities, fix the time and place and date, promote awareness, make arrangements to give memorandum to concerned officers for solution of issues

PROGRAMME: Do advocacy by conducting rallies/ dharna

ACTIVITIES: Conduct meetings, take permission from officers, fix date, time and place, fix the route of the rally, inform the media

GAPS in the above listed Programmes / Activities

GAPS

WHAT NEEDS TO BE DONE

RELATIONSHIP

POSITIVE

Incident 1: Dharna for issuing disability certificate

Incident 2: Increase in marriages because of marriage melas

NEGATIVE

Incident 1: Organise Mahasabha

Incident 2: Woman with locomotor disability fractured her leg and was not supported

WHAT NEEDS TO BE DONE

STRUCTURE

ENABLING FACTORS

HINDERING FACTORS

WHAT NEEDS TO BE DONE

Helpful Mechanism

HELPFUL FACTORS

HINDERING FACTORS

WHAT NEEDS TO BE DONE

Rewards

Kinds of rewards provided in your institution

ISSUES

WHAT NEEDS TO BE DONE

LEADER

Q-1 What do you understand by leader? Who is the leader in MPVM?

Q-2 What support does the leader require to make the institution effective ?

Q.3 What should the leader be doing and not doing?

DO’S

DON’TS

Example 4: Anna Theresa Disability Development Trust (ATDDT, Tamil Nadu)

PURPOSE

PROGRAMME: Awareness raising

ACTIVITIES: World Disability Day, Rally, Presenting memorandum, Street plays, School awareness activity, Care givers training, Providing medicine, Raise awareness among stakeholders on mental illness, Accessing schemes and entitlements

PROGRAMME: Promote and protect the rights of women with disabilities

ACTIVITIES: Training women with disabilities on rights, Health and education, sanitation, Forming women’s groups, Vocational training and support self-employment, Conduct office bearers, training on rights of women with disability

PROGRAMME: Promote and protect child rights

ACTIVITIES: Physiotherapy for severely disabled children, Early intervention for 0 to 14-year children with disabilities, Formation of parents group, Aids and appliances, Children’s summer camp, Parents meeting and training, Inclusive education, home-based education

PROGRAMME: Capacity building

ACTIVITIES: Form gram panchayat - level DPOs, Office bearers/ leaders training on disability rights, Exposure visits

PROGRAMME: Fund raising and local resource mobilisation

ACTIVITIES: Contacting business community, Seeking donors, Utilisation of 3% funds at gram - panchayat level, Collecting membership fee from members, Charging resource persons’ fees

PROGRAMME: Network and alliance building

ACTIVITIES: Network other CBOs, Govt, NGOs

PROGRAMME: Economic empowerment

ACTIVITIES: Forming SHGs /groups, Bank linkages, Campaign (rally, hunger strike) to avail 3% reservation from government

GAPS

WHAT NEEDS TO BE DONE

Relationship

POSITIVE

Incident 1: Election conducted and new office bearers elected

Incident 2: Cricket tournament organised by ADD India and ATDDT become runner up

NEGATIVE

Incident 1: Staff turnover

Incident 2: Decision to register the DPO as a Trust or Society. All legal consultants said to register in Trust Act

WHAT NEEDS TO BE DONE

REWARDS: Encouragement and appreciation

Types of Rewards

ISSUES

WHAT NEEDS TO BE DONE

STRUCTURE

ENABLING FACTORS

HINDERING FACTORS

WHAT NEEDS TO BE DONE

HELPFUL MECHANISM

ENABLING FACTORS

HINDERING FACTORS

WHAT NEEDS TO BE DONE

Capacity building of members on the following:

Monitoring and follow-up of programme implementation

LEADER

Q.1 What support does the leader require?

The leader requires the support of

DO’S

DON’TS

Not scold in public /give feedback in person

Example 5: Rajasthan Viklang Manch

PURPOSE

PROGRAMMES: Promote awareness about basic services

ACTIVITIES: Rally, dharna, Provide legal awareness, Participate in marriage melas organised by other DPOs

GAPS

WHAT NEEDS TO BE DONE

Relationship

POSITIVE

Incident 1: Changes in rules of pension scheme

Incident 2: Distribution of motorised tricycle

NEGATIVE

Incident 1: Protest/staged dharna when money was stolen at a bank from a person with disability

Incident 2: Application of motorised wheelchairs given for verification in case of 2 persons with disabilities

WHAT NEEDS TO BE DONE

HelpfHELPul Mechanism

ENABLING FACTORS

HINDERING FACTORS

WHATS NEEDS TO BE DONE

Rewards

TYPES OF REWARDS

WHAT NEEDS TO BE DONE

STRUCTURE

ENABLING FACTORS

HINDERING FACTORS

Practices applied to units/ persons within the DPO

WHAT NEEDS TO BE DONE

Scope of activities should be broadened on other issues – RTI, employment, women with disabilities, political participation, barrier-free environment

LEADER

Q-1 What do you understand by leader?

Q-2 What support does the leader require to make the institution effective ?

Support is required for all members in all aspects – raising funds, intellectual, conducting activities, support, faith, tolerance, surrender and obey/ fulfil the decisions taken

Q.3 What should the leader be doing to fulfil the purpose of the DPO?

Conduct the activities keeping the purpose in focus

Example 6: National Association for the Blind (NAB)

PURPOSE

PROGRAMMES

ACTIVITIES

GAPS

WHAT NEEDS TO BE DONE :

Limite d access to financial resources

Inadequate /unequal resources for different kinds of disabilities

Study the existing curriculum used in inclusive education, identify the issues faced by different types of disabilities and evolve strategies to address them:

RELATIONSHIP AND REWARDS

POSITIVE

Incident 1: Flag day

Incident 2: Music classes conducted regularly

NEGATIVE

Incident 1: Shifting of stuff from old building to new building where one group felt it worked more– two groups were made comprising persons with visual impairment and the other of speech and hearing impaired

Incident 2: Use of land allocated for construction of office building

WHAT NEEDS TO BE DONE

STRUCTURE AND HELPFUL MECHANISM

ENABLING FACTORS

HINDERING FACTORS

WHAT NEEDS TO BE DONE

REWARDS

LEADER

  1. Who is the leader?

Honorary general secretary / executive council

2. What support does the leader require to make the institution effective?

  1. What should the leader be doing to fulfil the purpose of the organisation?

Take decisions on behalf of the organisation based on experience and for the fulfilment of the Vision of the organisation

Example 7: Prayas Disability Rights Group

PURPOSE

Ensuring right to vote and access to employment for persons with disabilities

ACTIVITIES

GAPS

WHAT NEEDS TO BE DONE

RELATIONSHIPS

Steps to be taken to maintain good relationship:

STRUCTURE

Benefit of having a Structure:

This structure helps them in solving problems and dissemination of information among group members.

Helpful Mechanism

REWARDS

Method adopted: Verbal appreciation, Give more responsibilities

Type of rewards given: In monthly meeting group members share the achievements and all of them clap for doing good job. This helps in motivating group members and no issues come up from this kind of reward

WHAT NEEDS TO BE DONE

The decision of giving token gift should be taken with group consensus and all the members should know that if anyone among them will do good job he/she will receive this reward. This will help in resolving issues that come up from this reward system.

LEADER

  1. Who is the Leader ? President, Secretary and Treasurer are the leaders of the group

  2. Support needed by the Leader:

  3. Members should follow the leaders

  4. All information regarding group activities should be passed to leaders

  5. Regular attendance of members in group meetings for effective functioning of the group

  6. Role of a leader to fulfill the purpose of the group . Maintain good relationship with members

  7. Look after the relationship among members

  8. Give priority to the group’s needs instead of fulfilling personal needs

  9. Create an image to effectively run the group and make all the members follow him/her

Example 8: Nijera Kori - Disability Rights Group

PURPOSE

Purpose of the Group: To make persons with disabilities self-reliant

ACTIVITIES:

GAPS: Need more information on the needs of persons with other disabilities and other disability - related issues like creating barrier - free environment

WHAT NEEDS TO BE DONE:

RELATIONSHIPS

Steps to be taken to maintain good relationship:

REWARDS

TYPES OF REWARDS GIVEN: Clapping and verbal appreciation

WHAT NEEDS TO BE DONE: More responsibilities to be given to the members.

LEADER

Leader: This newly formed group does not have a leader.

Support needed by the leader:

Role of a leader to fulfil the purpose of the group: Leader will guide the group to perform well.

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Example 9: Nandabhanga Swanirvar Gosthi (DRG)

PURPOSE

Purpose of the group: Create barrier - free environment, to ensure employment opportunities and right to vote for persons with disabilities

ACTIVITIES

GAPS

WHAT NEEDS TO BE DONE

RELATIONSHIP

Positive experience:

Some members of the group are engaged in inter-loaning. They have involved themselves in various income - generation activities. This year they have included other members who are not engaged in inter-loaning in short - term skill development workshops. These members actively contributed in production as well as marketing the products.

Negative experience:

Some members do not repay the loan on time. This creates conflict with other members and for this they have become irregular in group meetings and other activities.

Relationship between leader and group members:

The leader has helped the members in production and marketing of products. She kept the record of expenses incurred on the production and amount received after selling and shared this with all the members to maintain transparency within the group.

Relationship with external stakeholders:

Positive experience:

Negative experience:

Steps to be taken to maintain good relationship:

STRUCTURE

The President and the Secretary jointly take care of the responsibilities of the Treasurer.

Benefit of having a Structure:

REWARDS: When a person does a good job, the kind of appreciation given by others to him/her is a reward

TYPE OF REWARDS GIVEN: Group members verbally appreciate for doing a good job and this helps in motivating group members. No issue comes up from this reward system.

LEADER

The leader: The President and the Secretary are the leaders of their group

Support needed by the leader:

Role of a leader to fulfill the purpose of the group:

5.2.3 Six - Box Model Questions for Group Discussion and Process

In small groups the following questions are to be discussed for assessing the capacity/ diagnosing the issues/ problems and working out an action plan.

Purpose

1. Make a list of programmes/ activities being undertaken by the DPO

2. Examine if these are in consistence with the purpose of the DPO and the current context/ situation

(The current situation is that of social exclusion of persons with disabilities due to poverty, discrimination – on the basis of gender and disability, inadequate access to inclusive education and access to health services, limited access to information and low awareness, limited barrier-free environment, limited access to physical and communication, unequal distribution of resources, low access to basic services and aids and appliances, weak access to justice and violation of human rights and limited statistics / census. We need to remember the approaches discussed in the 1st workshop: charity, medical, social and rights based).

3. If the activities are not aligned then what are the gaps and what needs to be done to fill it?

Relationship

1. Discuss one critical positive and negative incidents that have occurred in the past six months, examine the effect of relationships: horizontal among DPO members, vertical between the designated posts/ authority and with external stakeholders.

2. List what all needs to be done to minimise the occurrence of negative incidents and strengthen the positive ones.

Structure

1. Which aspects of our structure and systems facilitate and hinder our work?

2. Are there any differential practices applied to units/ persons within the DPO?

3. List what needs to be done to streamline anomalies or align the structure with the purpose

Helpful Mechanisms

1. Which factors/ formal and informal mechanisms/ processes enable you to do your work and which factors make it difficult?

2. What needs to be done to reduce the difficulties faced?

Rewards

1. What is the understanding about ‘rewards’?

2. What kind of rewards are provided in your institution and do these motivate you?

3. What are the issues in the pattern followed in your DPO and what needs to be done to improve it?

Once the above data from the 5 boxes is shared, one by one by, all the sub – groups, then the last one on leader could be discussed.

Leader

1. What do you understand by leader?

2. Who is the leader in the DPO

3. What support the leader requires making the institution effective and what should the leader be doing and not doing to fulfil the purpose of the DPO?

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5.3 SWOT ANALYSIS FOR CAPACITY ASSESSMENT OF THE DPO

5.3.1 What is SWOT Analysis?

SWOT is an acronym for Strengths, Weaknesses, Opportunities and Threats . By definition, Strengths (S) and Weaknesses (W) are considered to be internal factors over which organisations have some measure of control. Also, by definition, Opportunities (O) and Threats (T) are considered to be external factors over which you have essentially no control.

SWOT Analysis is the most renowned tool for audit and analysis of the overall strategic position of the organisation and its environment. Its key purpose is to identify the strategies that will create an organisation - specific intervention model that will best align its resources and capabilities to the requirements of the environment in which it operates. In other words, it is the foundation for evaluating the internal potential and limitations and the probable opportunities and threats from the external environment. It views all positive and negative factors inside and outside the organisation that affect the success. A consistent study of the environment in which the organisation operates helps in predicting the changing trends and also helps in including them in the decision-making process of the organisation.

An overview of the four factors (Strengths, Weaknesses, Opportunit ies and Threats) is given below:

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Advantages of SWOT Analysis

SWOT Analysis is instrumental in strategy formulation and selection. It is a strong tool, but it involves a great subjective element. It is best when used as a guide, and not as a prescription. A successful organisation builds on its strengths, corrects its weaknesses and protects against internal weaknesses and external threats. It also keeps a watch on its overall organisational environment and recognises and exploits new opportunities faster than its competitors.

SWOT Analysis helps in strategic planning in the following manner:

Limitations of SWOT Analysis

SWOT Analysis is not free from its limitations. It may cause organisations to view circumstances as very simple because of which the organisations might overlook certain key strategic contacts which may occur. Moreover, categorising aspects as strengths, weaknesses, opportunities and threats might be very subjective as there is a great degree of uncertainty in the outer world. SWOT Analysis does stress upon the significance of these four aspects, but it does not tell how an organisation can identify these aspects for itself.

How to Do a SWOT Analysis?

To get full benefits of a SWOT Analysis, it is important to use the tool correctly. The first thing to remember is that the analysis should provide you with information that helps in making decisions. As such, laundry-lists of strengths, weaknesses, opportunities and threats are not unto themselves helpful. It is only when the potential implications of this information on the organisation are assessed that you start to get any really meaningful analysis. Secondly, it is most beneficial to look at the strengths and weaknesses only with respect to the organisation, i.e. strengths and weaknesses should be internally focused. In addition, opportunities and threats should be externally focused, i.e. what the opportunities and threats outside of the organisation are.

The key steps in conducting a SWOT analysis include:

  1. Brainstorming lists of strengths, weaknesses, opportunities and threats (remembering to keep the focus internal for strengths and weaknesses and external for opportunities and threats).

  2. Take the laundry-list of ideas within each category and reduce them to the top 5 to 10 ideas (per category).

  3. Review each category separately and discuss each of these ideas and the potential implications to the organisation.

  4. Remember that the idea of SWOT Analysis is to gain a better understanding of how your organisation can relate to its external environment. As such, the next step is to look at the internal strengths and weaknesses of the organisation and see how they relate to the opportunities and threats external to the organisation.

  5. The final step is to look at the following areas:

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Example of SWOT Analysis:

Strengths: 

Weaknesses: 

Opportunities: 

Threats: 

How Do You Develop a SWOT Analysis?

Here's one way to proceed in a gathering to produce your analysis.

  1. Designate a leader or group facilitator who has good listening and group process skills, and who can keep things moving and on track.

  2. Designate a recorder to back up the leader if your group is large. Use newsprint on a flip chart or a large board to record the analysis and discussion points. You can record later in a more polished fashion to share with stakeholders and to update.

  3. Introduce the SWOT method and its purpose in your organisation. This can be as simple as asking, "Where are we, where can we go?" If you have the time, you could run through a quick example based on a shared experience.

  4. Depending on the nature of your group and the time available, let all participants introduce themselves. Then divide your stakeholders into smaller groups. If your retreat or meeting draws several groups of stakeholders together, make sure you mix the small groups to get a range of perspectives, and give them a chance to introduce themselves.

The size of these depends on the size of your entire group – breakout groups can range from 3 to 10. If the size gets much larger, some members may not participate.

  1. Have each group designate a recorder, and provide each with newsprint or dry-erase board. Direct them to create a SWOT Analysis in the format you choose - a chart, columns, a matrix, or even a page for each quality.

a. Give the groups 20-30 minutes to brainstorm and fill out their own strengths, weaknesses, opportunities and threats chart for your programme, initiative or effort. Encourage them not to rule out any ideas at this stage, or the next.

b. You can provide these tips for listing:

Decide beforehand how you will gather the input. There are at least two ways to do so:

a. Proceed in S-W-O-T order, recording strengths first, weaknesses second, etc.

b. Or, you can begin by calling for the top priorities in each category - the strongest strength, most dangerous weakness, biggest opportunity, worst threat - and continue to work across each category.

There are also at least two ways to take information from the groups:

a. Ask one group at a time to report ("Group A, what do you see as strengths?"). You can vary which group begins the report so a certain group isn't always left "bringing up the end" and repeating points made by others. ("Group B, let's start with you for weaknesses.")

b. Or, you can open the floor to all groups ("What strengths have you noted?") for each category until all have contributed what they think is needed.

Whichever way you proceed, the facilitator or recorder should keep writing until the input from all groups is recorded. Note repeated items across groups for "weighing" important possibilities.

You might want to discuss some of the items as they come up. In fact, cross connections between categories - "This strength plays into that opportunity"- is what you're pursuing, so a good facilitator will tease out those insights as they arise.

At the same time, you want to keep the process moving until all the chart is complete, so facilitator and recorder should work together to begin a fifth column or a new page for working ideas.

Encourage the participants to also make notes of ideas and insights as you build so the drawing - together process will continue to be creative and collaborative.

  1. Discuss and record the results. Depending on your time-frame and purpose:

  2. Come to some consensus about the most important items in each category.

  3. Relate the analysis to your Vision, Mission, and goals.

  4. Translate the analysis to action plans and strategies.

  5. If appropriate, prepare a written summary of the SWOT Analysis to give or e-mail to participants for continued use in planning and implementing your effort.

References:

_David, Fred R. (1993). Strategic Management, 4th Ed. New York: Macmillan Publishing Company.

_Jones, Bernie. (1990). Neighborhood Planning: A Guide for Citizens and Planners . Chicago and Washington, D.C.: Planners Press, American Planning Association.

Internet

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5.3.2 Session Plan and Facilitation Note – SWOT Analysis

Time: 2 hours

Method: Group discussion

Materials: Flipcharts, black/white board, markers, relevant visuals for explanation and Reading 9 on SWOT Analysis

Objective:

Process:

Facilitator’s note:

Provide examples of advocacy efforts done by various DPOs and their achievements

EXAMPLES OF SWOT ANALYSIS OF DPOs

Example 1: Disability Rights Group (DRG)

Strengths

Weaknesses

Opportunities

Threats

Steps to minimise weaknesses:

Steps to minimise threats:

Strategic Directions

Example 2: Disability Rights Group

Strengths

Weaknesses

Opportunities

take support from them

Threats

Steps to minimise the weaknesses:

Steps to minimise threats:

Strategic Directions

Example 3: Uttar Pradesh Viklang Manch

Strengths

Weaknesses

Opportunities

Threats

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5.4 Session Plan and Facilitation Note – Job Analysis for Individual Capacity Assessment

Time: 2 hours

Method: Group discussion

Materials: Flipcharts and markers

Objective:

The participants from the respective DPOs will be able to demonstrate and outline the roles and responsibilities of the office bearers of their institution for effective and efficient functioning

Process:

Some examples have been given below:

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EXAMPLES OF JOB ANALYSIS OF DPOs

Example 1: KARO

Post/Office Bearer: Members

Qualities/ Skills: Honesty, Unity concept/ attitude, above 18 years or represented by parents for below 18 years

Roles and Responsibilities: Mobilising people for making groups, Maintain relationships between taluka and district level groups

Post/Office Bearer: Taluka Representative

Qualities/ Skills: Honesty, Unity/concept attitude, Above 18 years or represented by parents for below 18 years, Basic literacy, Able to collect information, Able to build relationship with local - level groups / government departments

Roles and Responsibilities: Identify persons with disabilities from villages / panchayat and include them as members, Formation of taluka - level groups, Sharing information, Link / coordination between members and district representatives, Able to address the local - level issues / bring it to notice at district level, Linkages for accessing government schemes

Post/Office Bearer: District Representative

Qualities/ Skills: Honesty, Unity/concept attitude, Above 18 years or represented by parents for below 18 years, Basic literacy, Able to collect identification, Build relationship with local - level groups / government departments, Have basic communication skills, Be able to do a critical analysis of issues / social inclusion, Commitment to work voluntarily and provide support to taluka groups, Primary level of education

Roles and Responsibilities: Regular interaction between and among all the departments of the government, Build rapport with local DPOs, NGOs and donors, Put pressure on District Collector to conduct review meetings, Implement action plans made at the State level, Identify local resources and share information, Regular participation in quarterly State - level meetings, Bring issues to the State - level meetings not addressed at the district levels, Implement the decisions taken, File RTI to collect information at the district levels, Participate and motivate others to participate in district - level programmes of the government

Post/Office Bearer: Zonal Coordinator

Qualities/ Skills: Qualification – 10th std, Abel to travel from one district to another, Able to strengthen district - level groups, Should know sign language / different methods of communicating with different persons with disabilities

Roles and Responsibilities: Ensure that all representatives from district participate at State - level meetings, Ensure participation of persons from cross-disabilities, Organise leadership / capacity - building training for district representatives, Use RTI to collect information at State levels, Bring forth issues not addressed at district levels, Coordinate between district and State - level representative, Facilitate fact finding in cases of violation of rights / inform State - level bodies and government officials, Document inclusive practices and share widely

Post/Office Bearer: State Coordinator

Qualities/ Skills: Able to travel across the State, Minimum qualification – Bachelor’s degree, Updated about current issues / developments in the country, Basic legal literacy / aware about national, international policies and legal laws, Able to correspond in writing / email, Familiar with Internet usage, Be able to develop advocacy strategies, Documentation and management skills

Roles and Responsibilities: Advocacy with government and other stakeholders, Identify resources from district levels, Collect information about activities from district level and compile for sharing, Coordinate and monitor the activities of the Zonal Coordinators, Prepare newsletter (Quarterly)

Post/Office Bearer: Treasurer

Qualities/ Skills: Minimum qualification – PUC Commerce / B.com, Transparent and accountable, Honest / non-corrupt

Roles and Responsibilities: Maintain books of accounts / vouchers, Prepare reports for auditing, Present income and expenditure statements in quarterly meetings, Monitor budgetary spending, Be present in large - scale programmes

Post/Office Bearer: Joint Secretary

Qualities/ Skills: Able to travel across the State, Minimum qualification – Bachelor’s degree, Updated about current issues / developments in the country, Have basic legal literacy / aware about national, international policies and legal laws, Able to correspond in writing / email, Familiar with Internet usage, Be able to develop advocacy strategies, Documentation skills and management skills

Roles and Responsibilities: In absence of Secretary should play his/her role, Be present in large - scale programmes

Post/Office Bearer: Secretary

Qualities/ Skills: Able to travel across the State, Minimum qualification – Bachelor’s degree, Updated about current issues / developments in the country, Have basic legal literacy / aware about national, international policies and legal laws, Able to correspond in writing / email, Familiar with Internet usage, Be able to develop advocacy strategies, Documentation and management skills,

Roles and Responsibilities: Organise State quarterly meetings, Prepare the agenda after discussing with office bearers, Correspondence / minutes of meetings, Follow-up with Treasurer for audit, Visit districts regularly to strengthen groups, Resource mobilisation, Link / coordinate with Zonal / District Coordinator, Follow - up on collective decisions taken, Monitor implementation of programmes, Prepare annual report, Approve newsletter with the President of the DPO and core committee members

Post/Office Bearer: Vice President

Qualities/ Skills: Able to travel across the State, Minimum qualification – Bachelor’s degree, Updated about current issues / developments in the country, Have basic legal literacy / aware about national, international policies and legal laws, Able to correspond in writing / email, Familiar with Internet usage, Be able to develop advocacy strategies, Documentation and management skills

Roles and Responsibilities: Assume responsibility in the absence of the President, Ensure participation of women and cross - disability groups, Make a resource mobilisation strategy and visit districts

Post/Office Bearer: President

Qualities/ Skills: Able to travel across the State, Minimum qualification – Bachelor’s degree, Updated about current issues / developments in the country, Have basic legal literacy / aware about national, international policies and laws, Able to correspond in writing / email, Familiar with Internet usage, Be able to develop advocacy strategies, Documentation skills and management skills, Learn English

Roles and Responsibilities: Develop programme plan / advocacy strategy, Visit districts, Prepare proposals / presentations for fund raising, Participate in State / national - level meetings, Linkage with government department for policy - level changes, Initiate and conduct research, Promote innovative inclusive practices

Example 2: Madhya Pradesh Viklang Manch

Position: President

Qualities/Skills: Honest, tolerant, conscientiousness, trustworthy, skilled, service oriented, not discriminate between rich and poor; Ability, decision making power, have good social communication skills, should be educated

Responsibility: Take decisions after discussing with committee members and office bearers, Monitor and review the activities, Guide the members and the divisional heads, Call meetings, Programme planning, Monitor the budget utilisation, Clarify the purpose of the organisation, Disseminate work among the members

Position: Vice President

Qualities/Skills: Honest, tolerant, conscientiousness, trustworthy, skilled, service oriented, not discriminate between rich or poor, Ability, decision making power, have good social communication skills, should be educated

Responsibility: Assume responsibility in the absence of the president, Support the president

Position: Secretary

Qualities/Skills: Honest, tolerant, conscientiousness, trustworthy, Ability, decision making power, have good social communication skills, should be educated

Responsibility: Take minutes of the meeting, Give information to all members, Send minutes to all the members, Provide annual report, narrative and financial reports, Implement the activities

Position: Joint Secretary

Qualities/Skills: Honest, tolerant, conscientiousness, trustworthy, decision making power, have good social communication skills, should be educated

Responsibility: Assume responsibility in the absence of the Secretary, Support the Secretary

Position: Treasurer

Qualities/Skills: Honest, tolerant, conscientiousness, trustworthy, skilled should be educated, knowledgeable about accounts keeping, spend money as per requirement

Responsibility: Maintain accounts

Position: Members

Qualities/Skills: Be a person with disability

Responsibility: Participate in meetings/ events, Orient other persons with disabilities to become members

Example 3: Anna Theresa Disability Development Trust - ATDDT

Position: General Body Members

Qualities and qualifications: Person with disability, belonging to same block, no educational barrier

Roles and responsibilities: Learn how to sign to be a member of the SHG, Be a member of SHG/Federation, Be able to collect membership fee, Support conflict resolution, Bring unresolved problems to the federation

Position: CBR Worker

Qualities and qualifications: Be a person with disability or family member of a persons with a disability, Social service motto, Volunteerism, 10th pass or fail, Belong to the block or district, Punctuality

Roles and responsibilities: Home visit, conducting SHG meetings, Awareness raising in the community, Follow the decision taken by the federation, Abide by rules and regulations, Not take leave without permission from higher authority (President / Secretary)

Position: Executive members

Qualities and qualifications: Be a person with disability or family member, Social service motto, Volunteerism, 10th pass or fail, Belong to the block or district, Punctuality, Have cell phone

Roles and responsibilities: Answer and reply missed calls, Regularly attend meetings of federation, Involve in decision making, Information sharing, Fulfill the given /allocated responsibilities

Position: Treasurer

Qualities and qualifications: Be a person with disability or family member, Social service motto, 10th pass or fail, Belong to the block or district, Punctuality

Roles and responsibilities: Take responsibility of keeping records of savings, membership fee and financial matters, Keep books of accounts, Promptness, Accounts/ auditing, Fund raising and local resource mobilisation

Position: Secretary

Qualities and qualifications: Be a person with disability or family member, Social service motto, 10th pass or fail, Belong to the block or district, Punctuality

Roles and responsibilities: Inform about meetings to all concerned, Keeping reports, minutes of the meetings, Prepare report for donors, Take responsibility in the absence of the President, Monitoring and implementation of plans, Represent at national, State and district programmes, Fund raising

Position: President

Qualities and qualifications: Be a person with disability or family member, Social service motto, Volunteerism, 10th pass and above, Belong to the block or district, Punctuality

Roles and responsibilities: Be aware about the rights and Acts, Maintain relationship with the government and other stakeholders, Network and alliance building at all levels: gram panchayat, State and national, Programme planning, Fund raising and local resource mobilisation, Managerial skills, Know English/ willing to learn English

Example 4: Uttar Pradesh Viklang Manch

Position: President

Qualities / Skills: Leadership qualities, Representation competencies, Communication with stakeholders, Coordination with other DPOs

Key roles and responsibilities: Overseeing the programmes, Representing DPO, Linkage and alliance building, Coordination with other DPOs, Resolving organisational problems

Position: Secretary

Qualities / Skills: Good understanding of rights and Acts for the rights of persons with disabilities, Programme, management, Documentation, Meeting management, Relationship building

Key roles and responsibilities: Overseeing the functioning of the DPO, Inviting meetings and informing meetings, Communication with stakeholders, managing documents, implementing the decisions by the board

Position: Treasurer

Qualities / Skills: Mobilising resources, Book keeping, Fund flow management, Monitoring financial transactions

Key roles and responsibilities: Mobilising and managing budget, Getting budget approval, Account keeping, Supporting disabled persons

Position: Member

Qualities / Skills: Understanding of their rights, Helping other members to be part of DPO, Communicating the achievements of the DPO with other members, Identification of other members

Key roles and responsibilities: Strengthening organisations, Expanding the DPO, Gathering information about disabled persons and linking them to the DPO

Position: Executive body

Key roles and responsibilities: Implementing the decisions of the general body, Designing programmes Enhancing visibility of the DPO

Position: General body

Key roles and responsibilities: Taking overall decision for the DPO, Policy setting, Taking accounts of progress

Example 5: Rajasthan Viklang Manch

Position: President

Qualities / Skills: Honest, tolerant, conscientiousness, trustworthy, skilled, service oriented, non- discriminatory between rich or poor, Ability, decision - making power, have good social communication skills, should be educated

Key roles and responsibilities: Take decisions after discussing with committee members and office bearers, Monitor and review the activities, Guide the members and the divisional heads, Call meetings, Make a comprehensive programme plan, Monitor the budget utilisation, Clarify the purpose of the organisation, Disseminate work among people

Position: Vice President

Qualities / Skills: Honest, tolerance, conscientiousness, trustworthy, skilled, service oriented, not be discriminatory between the rich or poor, ability, decision - making power, have good social communication skills, should be educated

Key roles and responsibilities: Assume responsibility in the absence of the president, Support the president

Position: Secretary

Qualities / Skills: Honest, tolerance, conscientiousness, trustworthy, skilled, service oriented, not be discriminatory between the rich or poor, decision - making power, have good social communication skills, should be educated

Key roles and responsibilities: Take minutes of the meeting, Give information to all members, Send minutes to all the members, Provide annual report, narrative report, Implement activities

Position: Treasurer

Qualities / Skills: Honest, tolerance, conscientiousness, trustworthy, skilled, service oriented, not be discriminatory between the rich or poor, decision - making power, have good social communication skills, should be educated, knowledge about accounts keeping, spend as per requirement

Key roles and responsibilities: Maintain accounts

Position: Unit Heads

Qualities / Skills: Honest, tolerance, conscientiousness, trustworthy, skilled, service oriented, not be discriminatory between the rich or poor, decision - making power, have good social communication skills, should be educated, have information about their own unit

Key roles and responsibilities: Assume entire responsibility of their own unit, Address the issues and concerns of their own unit, Make new members, Inform other persons with disabilities about the activities of the organisation

Example 6: Disability Rights Group (DRG)

Position: Leader/ President

Qualities / Skills: Be patient, Punctuality, Should be able to maintain good relationship, Capable of communicating with others, Ability to communicate effectively and make other people understand, Able to allocate tasks among group members as per their ability, Leadership, Ability to communicate with persons with different types of disabilities, Should have knowledge on relevant issues

Key roles and responsibilities: Gathering information on different issues, Maintaining good relationship with stakeholders, Be updated with new things and information, Should not work for personal benefit, Give priority to the needs and demands of the group

Position: Secretary

Qualities / Skills: Be patient, Honest, Literate, Should know different languages and mode of communication with persons with different disabilities

Key roles and responsibilities: Should be able to make group members follow his / her instructions, Sharing of information among group members, Be updated about various activities and recent developments

Position: Treasurer

Qualities / Skills: Be patient, Should have concentration in maintaining accounts, Should know the system of accounts maintenance, Minimum education required for this post

Key roles and responsibilities: Maintaining accounts in a transparent way, Plan for future activities and keeping records of expenses for planned activities.

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5.5 Scope and Applicability

Capacity assessment has largely been the domain of organisational development experts. The tools administered for capacity assessment are often elaborate and complicated and time consuming. In this section simplified participatory tools have been elaborated so that the facilitators trained from among the members of the DPOs could administer them and cull out the areas of capacity assessment.

As most of the methods in this training are based on group discussion it is convenient for the participation of persons with visual impairment. For persons with speech and hearing impairment some effort would be required as the concept of an organisation and its components need to be clear to them. Illustration or picture sketches have been developed to explain the elements of the Six - Box Model.

If the tools elaborated in this training are applied to a large number of DPOs, a clear direction of the situation of DPOs and the areas of capacity building in a particular region may emerge. There may be many similarities in this as is evident from the examples provided in the toolkit.

6. CHALLENGES AND LESSONS LEARNT

6.1 Challenges

6.1.1 Extending Hand - Holding Support to Partners:

The main challenge was is in providing hand - holding support to the partners. It was visualised that after providing inputs to the selected deputed participants from the organisation who attended the ToT on OD/ Institution Building one visit to each partner would suffice. Most organisations do not have a culture of training and almost no exposure to participatory training methods and tools. Hence, tremendous effort is required to engage the partners in developing a detailed training design, extending on the spot facilitation support and support for documentation of all the three trainings, including the steps followed and recording the processes of communicating with persons with different types of disabilities. OD experts were assigned as mentors for extending facilitation support to partners. Since OD experts providing support had limited exposure to disability, trends and challenges in adapting to the paradigm shift, constant follow - up was required through email, phone and in person discussions before the commencement of each training. In person facilitation support was extended to all the 8 partners for all the 24 trainings conducted.

It is pertinent to understand that OD interventions need to be addressed by experienced senior-level staff/ consultants with a high sensitivity to the learning needs of different types of persons with disabilities. In such initiative it is an added advantage if the staff or professionals engaged are oriented to disability.

6.1.2 Addressing Diverse Learning Needs:

Maintaining a learning balance among participants from the DPOs is also a challenge especially, when there is a diverse group of persons with disabilities. For example, in a mixed group comprising persons with visual impairment and hearing impaired, when a group of persons with a particular disability is conversing, in this case, persons with hearing impairment, the other group does not know what is happening, in this case persons with visual impairment, and other disabilities have to wait in silence as each group learns at a different pace. For group exercises in certain cases disability-wise sub-groups need to be formed to enable all to participate and voice their thoughts.

Managing the diversity and the politics among DPOs based on disability was a challenge in some groups. Nowadays most DPOs are trying to represent persons with cross disabilities. It was evident that one or two types of disabilities tend to dominate for lack of enough vocal members represented from disabilities like hearing impaired. At times the hearing impaired tend to drop out of trainings.

It was challenging for persons with visual impairment to understand the root cause and link it to the effects. The understanding of the development perspective among the DPOs is less; hence that also posed a challenge. This was communicated using the metaphor of a tactile tree drawn using ropes/ strings of different thickness to depict the roots, trunk, branches, leaves and fruits of a tree. The cause and effects of social exclusion of persons with disabilities were demonstrated using colour-coded cards in Braille and in local language.

6.1.2 Managing Diversity of Language and Education:

In India each state has its own language with many dialects. Initially as the OD concepts are not easy to simplify, it was envisaged that the ToT would be conducted in English. It was expected that the participants would convert and simplify the concepts in regional languages while conducting the trainings at the local level. Based on the needs of the participants, the ToT was conducted in two main languages – English and Hindi, with scope for translations in other vernacular languages. An additional day was included for conducting the TOT as language translation would take up extra time.

For field-level trainings, particularly in South India – Karnataka and Tamil Nadu, during the trainings carried out by partners a line-by-line translation support was arranged by the partners and they also took on the responsibility for recording the proceedings and the methodology adopted during the trainings.

Among the participants there was diversity in educational/ literacy levels. Some held a Master’s Degree while some participants were semi-literate and some non-literates. Moreover, each type of disability had a different means of communication with them. The visually impaired required the learning material in Braille or audio. The persons with low vision required material in large print or audio. Persons with locomotor disabilities and cerebral palsy required material in regular print. The semi-literate and non-literate were more comfortable with reading aloud.

Even among the persons with similar type of disabilities there was great diversity as most persons with disabilities in rural areas are non-literates, e.g among the visually impaired there are some who read and understand Braille, especially those who may have been educated in a school for the blind, while there were some who are non-literates and did not know Braille so for them we had to read aloud. There is a variety of sign languages and not all hearing impaired are familiar with Indian Sign Language (ISL) as this facility may not be available at the school level. So in some cases the parents accompanied them. At times it also became necessary for the main facilitator to check with the sign language interpreter how much he/ she understood before communicating to the participants with hearing impairment.

6.1.3 Maintaining the Consistency of Participants for All the Three Trainings:

Members of DPOs are mainly contributing their time and energy as volunteers to the organisation/ institution with a commitment to emancipate persons with disabilities in their own communities. Hence many a time it was not possible to ensure the participation of all the members for all the three trainings. Although the three trainings are independent, they are very much interlinked. In some DPOs the turnover was not too high but even then in the 2nd and 3rd trainings a couple of hours used to be spent on recapitulating the previous training so that it was a revision for the participants who had attended the trainings and the new comers would be briefed about what had been discussed and covered in the previous training. The reasons for inconsistency were often genuine as the participants would not have got leave from the employer, or was appearing for an interview for employment or was caught up in some social obligation or was ill. Many of the trainings were thus conducted over weekends to avoid absentee participation.

6.1.4 Identifying an Accessible Venue for Trainings:

Most buildings or venues that could be used for training for persons with disabilities in India are not constructed based on the principles of universal design. In residential trainings particularly, the venue needs to be accessible for persons with disabilities. As this is hard to find many times additional expenses would be incurred to find reasonable accommodation in the vicinity that is centrally convenient for all the participants. Wherever possible, temporary modifications or solutions would also need to be made.


6.1.5 Eliciting the Participation of Persons with Hearing and Speech Impairment:

In most DPOs the participation and membership of persons with speech and hearing impairment is very limited. For the three trainings it was very difficult to seek the participation of persons with speech and hearing impairment for various reasons. Not many such persons are found to be in a position to conceptually grasp the concepts for want of sign language interpreters. It was seen that most of them are not familiar with ISL. Hence one has to tap local mechanisms of communicating with persons with speech and hearing impairment but, at the same time, their availability also needs to be checked so that they could be present during the trainings. As this was not possible for all the three trainings, some persons with speech and hearing impaired dropped out.

6.2 Lessons Learnt

6.2.1 Simplify Concept and Use a Variety of Learning Methods:

The facilitator needs to introduce the topic (situational analysis, vision and mission, capacity assessment) and its various methods in a simple way using simple local language instead of using jargons. This process has used a simple and self-explanatory mechanism to demystify the theories. For example, the evolution of models of disability has been explained through a common character in 4 case studies, where the situation of the character changes to reflect the disability model. The pros and cons of each model have been demonstrated through the cases. There is a need to use a mix of methods to address the diverse needs of group members; eg. in one group mikes were used to ensure that some groups can be properly heard, illustrations were used for others; picture cards were used to identify characters of role plays and so on.

Simplification of the application of existing tools for its effective implementation in the context of DPOs is very much required. A variety of methods need to be used to address the diversity of disability, educational background and cultural context of the participants through use of demonstration, mime, skits, role plays, group discussions and presentations or lecture in a question and answer mode. The handouts provided during the trainings need to be provided not only in local language but also be made available in accessible format (Braille, large font, audio, pictorial). Diversity of too many kinds in one group – age, education, rural/urban and diversity of disability – should be avoided. The readiness of the group members should be taken into account before including them as participants. Prior to finally conducting the trainings mock sessions need to be conducted to refine the proposed adaptations for the benefit of all and to guide the trainers how to effectively use the adaptations. The participants were also exposed to some concepts prior to workshops and trainings so that they could also follow the subjects and themes of the trainings.

6.2.2 Utilising the Spirit of Voluntarism:

Members of DPOs are sparing their time voluntarily for the cause hence they have limited institutional resources; availability of time and funds. This means we have to make the maximum use of their limited time and cannot expect them to travel long distances. Travel costs are higher in any such initiative.

DPOs are people’s institutions and do not have a fixed structure, system of operation and systems to manage. Most persons devote their holidays and spare time for the activities with a spirit of voluntarism and a deep concern for the issue. However, this has limitations of outputs as the consistency depends on time availability. The structure is loose but mostly they have created posts like President, Vice President, Secretary General, Joint Secretary, Treasurer, members, etc. These form the core committee members and these office bearers provide direction, take decisions and conduct the activities.

There is not much role clarity among the office bearers and members take on leadership roles as per capability and time available. Clarity of essential elements of an organisation helps build effective DPOs. It is important for the DPO to revise and reframe the Vision and Mission statements periodically to remain in tune with the changing scenario. As the membership remains floating, with different members taking on leadership roles at different points of time, it is important to collectivise the Vision and Mission statements with all the members at the grass roots to keep the momentum and participation of members.

It is also important to follow, review and revise roles and responsibilities of office bearers periodically for ensuring the efficiency of the institution. For all tasks the principle of RASCI viz. who is Responsible for the task, who is Accountable, who can Support, who needs to be consulted and who should be informed about could be followed. This helps develop role clarity among members. DPOs need to focus more now on the mechanisms required for following and reviewing the roles they have identified as part of this process followed in the third training for different members. Although, clarity in roles is important; however one needs to guard against the attitude that ‘this is not my job’. Extra clarity has to be avoided, especially in DPOs where numbers are few and overlapping of responsibilities is required. It needs to be ensured that even if members are contributing voluntarily to the DPO the output is professional and of a high quality to be effective. With this process a sense of ownership of the DPO by its members has been initiated.

6.2.3 Building Capacity of DPOs:

The concept of participatory training as a way of learning is again new for this group of NGOs. Hence, it would help to build a module on participatory training for DPOs while considering the adaptability of participatory training methods and tools to orient/train persons with different types of disabilities for other DPOs if this initiative is to be adopted by others. In this way participants would find it easier to develop a training design and be clear on the use of participatory methods and be equipped as facilitators. The other major areas of capacity building that came up during the third trainings are:

6.2.4 Build Understanding on the Paradigm Shift as a Crucial Stepping Stone:

As regards persons with disabilities and their organisations, DPOs have mostly been governed by a charity approach that are always receiving benefits, concessions through government schemes, bus and rail pass, scholarships and pension. Needless to say, that these are essential basic services required by any marginalised population. Most participants admitted that in India 90 % of persons with disabilities subscribe to the charity approach and are isolated/ secluded within the household or community or in residential institutions, due to stigma, no accessible environment, negative attitude of society and limited awareness on rights. About 5 – 7 % receive medical interventions, including certification of disability and another 2 – 4 % get covered through the Community - Based Rehabilitation (CBR) approach practised by disability institutions and less than 1 % are members of DPOs and less than 0.5 % assert their rights for seeking justice.

With low levels of awareness on rights among persons with disabilities as well as the society, a long - drawn process of ‘concentisation’ is required. It may take a couple of decades before persons with disabilities and their representative organisations will truly be able to apply the human rights - based approach. Great efforts need to be made by organisations supporting DPOs in building their capacity and also reorienting their own ideological perspective as they will be instrumental in educating other stakeholders.

It is important to address the structural causes of social exclusion of persons with disabilities: It is essential to drive home that by only working on the causes of social exclusion will an impact be made by any intervention. Most often there is a tendency to work on the effects which may bring about only cosmetic changes in the lives of persons with disabilities. Addressing the structural causes of exclusion and the dynamics of power struggle will only lead to minimisation of discriminatory processes.

Clarity is required in engaging stakeholders as all players are in a position to play a positive role for promoting inclusive practices/ mainstreaming disability. This can only be done by strategically devising their role and engagement.

6.2.5 Empowering Persons with Disabilities to Claim Their Citizenship Rights:

A stir and rise in political consciousness of persons with disabilities is needed to enable them to assert their rights. For this it is first essential to obtain franchise (right to vote) and the exercise of it. Influencing political parties for including disability on their agenda will enable the disabled to become a vote bank.

The concept of citizenship needs to be understood clearly by persons with disabilities and the DPOs. It is essential that persons with disabilities change their behaviour from being mere beneficiaries or recipients to more responsible citizens contributing to the development process and viewed as consumers by the market. It is then that they will be able to participate on an equal basis with others. Rights will always come with responsibilities and that needs to be propagated. All disability models have their own strengths; they all have their own advantages and disadvantages; rights and charity are both welcome. All models need to go hand in hand to address the needs of the diverse groups. Any intervention by, for and with persons with disabilities would be futile unless and until it is emancipatory – aims to change the position/ status of persons with disabilities in society.

In this context DPOs need to value importance of the OD process and invest in institution building. Widespread leadership of different types of persons with disabilities need to be developed and not be restricted to only one or two kinds of disabilities. The voices of persons with disabilities from the most neglected and not so visibly obvious disabilities need to be raised from the interior regions of the country for the disability rights movement to create space for themselves in the mainstream process as the strongest and largest minority group.

6.2.6 Up-scaling Efforts and Replication for Standardisation:

DPOs comprise mostly poor persons with disabilities who are less educated and poorly employed. Hence, it may be difficult to organise DPO-level meetings and then also participate in planning meetings that lead a network of DPOs to advocate their rights. Minimum financial support is required for DPOs to regularly conduct monthly/ quarterly and annual meetings to maintain the membership and some funds to conduct capacity - building activities and advocacy efforts. Initial investments need to be made in building the capacities of persons with disabilities for more than a decade with a rights - based approach before results or outputs could be expected wherein persons with disabilities become active citizens of the country. When the DPOs use a capacity assessment tool like the Six-Box Model, it brings to light the gap between reality and desired situation. At the next level it is important to go beyond the diagnosis/ gaps in capacity to understand the misalignments between the core elements of the organisation – purpose, structure, helpful mechanisms, relationships and rewards, in its action with the larger environment or context to not only be relevant but also pay an influential role in emancipating the lives of persons with disabilities. For effecting changes in the existing system, thinking through and hand-holding is required. Groups have assessed their capacities and for capacity building extra effort is required.

6.2.7 Communicating with Persons with Visual Impairment:

Acknowledging diversity requires adaptations. Appropriate use of tactile training materials is very helpful. While facilitating in a group with a high level of diversity the facilitator needs to be very specific while giving instructions. If in any group discussion, visually and hearing impaired participants are together, then the Interpreter should help all the participants to understand one another’s views verbally and through sign language.

As mentioned before, the same format may not be accessible to persons with different disabilities. The demands of different persons in the same group are very different and catering to all is a challenge. Even for the members of the ‘so-called same disability’, different formats are required. For the different types and degrees of visual impairment - low vision and blind, 3-4 formats are required viz. Braille, audio, large print, electronic soft copies, etc. Conveying graphics in these formats is a major challenge; it may be possible in large print but not in other formats. For the hearing impaired, sign language and graphics are helpful.

The solution for such diverse requirements calls for following the standards developed for digital formats. The universally accepted format is DAISY – Digital Accessible Information System popularised by the Daisy Consortium which has developed such common universally applicable standards. It recognises that content developers and format designers need to be separate.


Some Important Considerations for Developing Accessible Formats:

Resources for Accessibility Guidelines:

EPUB 3 Accessibility Guidelines
http://www.idpf.org/accessibility/guidelines/

Tips for Creating Accessible EPUB 3 Files
http://www.diagramcenter.org/standards-and-practices/54-9-tips-for-creating-accessible-epub-3-files.html

Enabling Technologies Framework Guidelines
http://www.editeur.org/109/Enabling-Technologies-Framework/

EPUB3 Accessibility Developments
http://www.daisy.org/daisy-epub-3-developments/

So for making documents, visuals and audio-visual learning material compatible to assistive technology means adhering to standards, following best coding practices look into the treatment of non-textual content (images, video and audio)

6.2.8 Communicating with Persons with Speech and Hearing Impairment:

Different ways have been used to communicate with persons with speech and hearing impairment. As mentioned earlier, just as with spoken languages there is no uniformity of using sign language. Hence tools were adapted in different ways in the trainings. Some of the examples and learnings for adaptations for the hearing impaired are as follows:

Paradigm Shift: Presentation of skit has been proved to be very effective for persons with hearing impairment to understand such abstract concepts. Placards with large font placed on individual help to understand the characters, locations and sequence of the skit.

Problem Analysis: Illustrations have been developed on the basis of case studies – Asha’s story and Chandramathi’s story in this Toolkit for analysing the cause and effect relationship of the main problem / situation. Picture cards were also developed to communicate issues like malnutrition, poverty, absence of health services and discrimination.

Stakeholder Analysis: Pictures of different stakeholders and graph were used to clarify the importance and influence of each stakeholder.

Some useful tips that have emerged during the trainings are as follows:

Additional References:

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About the Partners

Action on Disability and Development (ADD), India supports Annai Theresa Disability and Development Trust (ATDDT), ATDDT is a cross disability DPO operational in three blocks, namely Kunnandarkoil, Gandarvakottai and Viralimalai of Pudhukottai district of Tamil Nadu. ADD India is a cross disability organisation operational for 25 years. ATDDT was informally set up in 2005 and was registered in 2010. It covers 3353 persons with disabilities and their families.

Contact:

Mr. S. Muralidhara

ADD India

Senior Programme Coordinator

Phone no: 09880946413

Email Id: muralidhara@addindia.org.in

ADD India address:

N0. 4005, 19th Cross, Banashankari, 2nd stage, Bangalore – 560 070.

Mr. T. Sasikumar

Secretary - ATDDT

Phone no: 09787418113

Email Id: atddt2010@gmail.com

Annai Theresa Disability and Development Trust

No. 74/14 D, Ist Street, Velayudha Nagar, North Car Street, Near EB Office, Keeranur – 622 502

Disability Advocacy Group (DAG) is a DPO in Gujarat informally set up in June 2005. It was formally registered in April 2010 and is a cross disability organisation with a total membership of more than 800 persons with disabilities.

Contact:

Ms Neeta Panchal

Secretary - DAG

Block No. 46/541, Nandanvan Avas Co. Op. Housing Society,

Nr. Nirnay Nagar Garnala, Nr. Madhavbaug, Nirnay Nagar, Ahmedabad- 382481, Gujarat, India

Mobile: 9879003981

Email id: daggujarat@gmail.com

Web: www.disabilityadvocacygroup.org

National Association for the Blind (NAB), Sabarkantha district branch in Gujarat has been operational since 1985. Currently it is working in Sabarkantha and Aravalli districts of Gujarat. It is a cross disability organisation with a membership of 391 persons with disabilities and reaches out to more than 7,000 persons with disabilities and families.

Contact:

Dr. Bhaskar Mehta

Hon. General Secretary - NAB

Old Swastik Vidya Mandir, Nandanvan Society

Anandnagar Area, Idar - 383430,

Sabarkantha, Gujarat

Contact No: O.(02778)250298, [R.](02778)251658, Mobile-9426060659

Email: NAB - nabsabarkantha@gmail.com


Rashtraya Viklang Manch (RVM) was initiated in 2006 and registered in December 2011. It has a membership of 10,000 persons with all types of disabilities. RVM is operational in 10 States of India: Jharkhand, Uttar Pradesh, Madhya Pradesh, Chhattisgarh, Odisha, Maharashtra, Bihar, Karnataka, Andhra Pradesh and Rajasthan.

Contact:

Mr. Sonu Golkar

Secretary General - RVM

Mobile: 08103416711

Email: secretary.rvm@gmail.com

Web: www.rvmindia.in

Sama Foundation, Bangalore, supports Karnataka Angavikalara Rajya Okkuta (KARO) a network of DPOs in 30 districts of Karnataka. Sama Foundation has been operational since 2005 and KARO has been working since 2000 as an informal federation of DPOs in Karnataka. KARO was registered in March 2014. It is a cross disability organisation with a membership of 2,500 persons with all types of disabilities covering 7,000 families of persons with disabilities.

Contact:

SAMA Foundation
No. 47/48, 59th cross, 17th, 'A' main, Rajaji Nagar, 5th Block,
Bangalore - 560 010,
Karnataka, India
Ph: 08023146058 
Email: samafoundation@sama-foundation.org
Website: www.sama-foundation.org

Mr.Devaraju.R – President – 09902984341, Email ID – devaraju2007@gmail.com

Mr.Arunkumar – Vice President – 07411520526, Email ID - arunkumarsama21@gmail.com

Ms Basavaraj – Secretary – 07411497625, Email ID: - basu.ramareddi@gmail.com

SANCHAR A.R.O.D supports Disability Rights Group (DRG) that is operational in 110 villages of South 24 Parganas district of West Bengal. SANCHAR has been operational for last 25 years and DRG for more than 10 years. DRG is not registered and consists of 179 persons with all types of disabilities as its members reaching out to 850 persons with disabilities and their families.

Contact:

SANCHAR A.R.O.D.

A2/6, Diamond Park, Kolkata – 700 104

Contact No. (033) 2497 5625

E-mail: sanchararod.india@gmail.com

Website: www.sanchar-india.org

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School for Potential Advancement and Restoration of Confidence (SPARC), India. SPARC - India is a non-profit organisation dedicated to the development of children/ persons with disabilities operational in Lucknow, Uttar Pradesh, since 1996. SPARC-India has supported the formation of Uttar Pradesh Viklang Manch (UPVM) since 2009. UPVM is a cross disability organisation and has a membership of 500 persons with disabilities and their families and is operating in 17 districts of UP.

Contact:

Mr. Amitabh Mehrotra

Director and Founder Chairperson, SPARC-India, Lucknow

Phone: 8795828720

Email: sparcindia95@gmail.com, sparcindia@rediffmail.com

Mr. Suraj Kumar Yadav

Secretary - UPVM, Lucknow,

Phone: 8795828703

Email Id: yadavsuraj94@yahoo.com

Address:

SPARC-India

Guru Daya Niwas, 26, Sachivalaya Colony, Mausambagh, Sitapur Road,

Lucknow - 226020. Uttar Pradesh

Unnati Organisation for Development Education is a voluntary non-profit organisation registered under the Societies Registration Act (1860) in 1990. It aims to promote social inclusion and democratic governance so that the vulnerable sections of society – dalits, tribals, women and persons with disabilities – are empowered to effectively and decisively participate in mainstream development and decision - making processes.

It is an issue - based, strategic educational support organisation, working in western India with people’s collectives, NGOs, elected representatives in local governance and the government. Collaborative research, public education, advocacy, direct field - level mobilisation and implementation with multiple stakeholders are the key instruments of our work. The interventions span from the grass root level to policy - level environment to ensure basic rights of citizens. In this, inspiration is drawn from the struggles of the vulnerable and strength from our partners. Presently, all the activities are organised around the following programme centres:

The learning derived from our field experiences are consolidated and disseminated in print and electronic forms for wider sharing through a Knowledge Resource Centre.