Self-Advocacy in India: Past, Present, and Future

SELF‐ADVOCACY IN INDIA: WHAT IT IS AND WHAT IT CAN GROW TO BE Leela Raj, December 2020 Brief History In India, the disability movement started primarily as a single disability movement. For example, the blind people's movement started as early as the 1930s. In the early 1970s, scattered voices demanded rights for people with disabilities. The 1980s then witnessed the amalgamation of demands from several groups and organizations under a cross disability umbrella. The cross disability movement grew from the initiative of the funding bodies ‐ some of the Viklang Manches (regional grassroots bodies in the community) across India were started by the initiative of Action Aid. Some fundraising organisations like DRF and Commonwealth Foundation prefer to support Disabled People’s Organisations (DPOs).

The disability sector gradually saw the birth of several Non‐Government Organisations (NGOs) and this fuelled the momentum of the Disability Rights Movement. The year 1995 became a benchmark year as it was then that the government passed the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act or PWD Act, 1995. It marked the beginning of a new era – an age in which people with disability earned visibility in educational and government institutions.

The last decade of the millennium also signified the slow but sure beginnings of the self‐advocacy movement of people with disabilities that called out for protection and recognition of their human rights. An important milestone in the disability advocacy efforts was the success in getting the Central Government to formulate a new disability legislation in convergence with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) – that which India had signed and ratified in 2007 – rather than bringing amendments to the PWD Act 1995. In 2010, the government formed a drafting committee to make the draft law. This committee had representation from across the disability sector – professionals, parent organisations, persons with disabilities, and government officials. After more than three years of the draft law, the Rights of Persons with Disabilities Bill, 2016 was passed which then became the RPwD Act, 2016 that came into force with effect from April 2017.

Current Scenario – Gains and Pitfalls However it has not been all smooth sailing. Even within the cross disability movement not all disabilities are equally represented. People with intellectual and developmental disabilities (IDD), because of the nature of their impairments, are usually represented by parent groups comprising parents of people with such disabilities. Oftentimes, the actual voices of these disability groups are prone to suppression and are sometimes overpowered by their parents. This may be attributed to a structural issue, as the creation of SAFI (Self Advocacy Forum of India) was organized as an offshoot of Parivaar, a National Confederation of Parents Organizations (NCPO). Parivaar is a federation of over 245 parent associations and civil societies that work for people with IDD across India.

Parivaar, a full member of Inclusion International, initiated a pilot project in 2008, to train persons with IDD in advocacy skills with the support of Christoffel Blindenmission, South Asia Regional Office, Bangalore (CBM SARO). Enthused by the success of this program, the program was offered in Andhra Pradesh, Karnataka, Kerala, Tamil Nadu, and West Bengal and later extended to Maharashtra, Odisha, Jharkhand, Madhya Pradesh, and Rajasthan. Today, Parivaar offers training in self advocacy in partnership with CBM International through a cadre of master trainers across India. Parivaar has tremendous presence and a growing membership and network in India. This cannot however be said for SAFI. SAFI continues to remain in Parivaar’s shadow, unable to come into its own, and continues to be under Parivaar’s tutelage and control. Most of the states in India today boast of a self‐advocacy presence yet this remains splintered and disorganized. Organizing and unifying their efforts will help lend them a strong voice and empower them to build a powerful identify independent of Parivaar.

Self‐advocacy in India is still mostly parent driven. Mentorship and leadership still rests in the hands of parent bodies. For people with intellectual and developmental disabilities to take over the driver’s seat, they require inspiration, training, mentorship and modelling from people with disabilities themselves and not their parents. This, however, shines the light on another inevitable reality and that is the power of valued

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social roles especially those roles that bestow financial independence. People with disabilities without such roles are economically dependent on their parents and families, ergo lack the independence and therefore the confidence to voice their opinion and wear the mantle of a self‐advocate. Subsequently, parents automatically take charge of the person’s lives.

Master trainers who are typically parents and special educators require a paradigm shift in their mindset and this calls for ongoing training and mentorship in universal best practices.

Voices of Self‐advocates A brief chat with a few self‐advocates with IDD revealed some important insights:  Impact on the individual: o Self‐advocacy has highlighted the importance of self‐awareness, awareness of their rights and self‐reliance. o Being a self‐advocate has energized them to become independent and to be of help to others, and has increased their self‐confidence. o It has created better opportunities and enhanced their image  Impact on community and society: Self‐ advocacy has enhanced and valorized their identity in society and drawn people from around them to support them  Accomplishments: o Self‐advocacy has brought them recognition and accolades in the form of interviews in the media, awards, community support, training, and empowerment. o It has enhanced their competence and encouraged them to move toward more positive changes in their life  Vision for the future: To create a platform to help empower others  What more to be done: o More people need to join the self‐advocacy movement. Create awareness in the rural areas through training and campaigns and form linkages between rural and urban movements o Strengthen local level support at the community level o Government and non‐government bodies must collaborate and support each other o Parents must focus on building their children’s skills and abilities to help them become self‐dependent which can them help in advocating for themselves The Udaipur Declaration of the 2nd SAFI National Convention, 2015 (Appendix) helps throw some light on what self‐advocates want and are entitled to, especially in terms of their right to personal liberty, civic and political participation, relationships, education, employment, recreation, and legal freedom.

The self‐advocacy movement has been initiated in India. However, as is evident from the self‐ advocates themselves, it needs a meaningful direction and guiding force to help fortify it to make it a movement truly owned and navigated by the people it is meant for.

Keystone’s Role As a part of our long‐term set of goals and activities through our current RIST grant, we have identified that we will strengthen organized activism by people with developmental disabilities, building on the work that has already been done. This is a first effort to understand the current situation and propose relevant actions that we will incorporate into the 2021 activities, extending into 2022. We have generated some recommendations below about what could or should be done, and now are ready to assess if any of these actions, or others not yet proposed, would be a good fit for us to take on.

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Organize facilitated sessions including SAFI leaders, people with disabilities, and other disability advocates and supporters to establish a blueprint of the future Engage one paid person with disability to lead a project to focus and strengthen the movement along with a support partner

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Evaluate the materials currently developed for both non‐disabled coaches/supporters/master trainers and people with disabilities Foster connections between SAFI self‐advocate leaders with other Indian disability activists to strengthen pan India disability advocacy movement Enhance competencies of potential self‐advocates to be their own voice Identify and strengthen services and opportunities that can help people with intellectual and developmental disabilities to move into valued social roles Link grassroots organizations and movements with urban movements and government bodies

References:

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https://thediplomat.com/2016/12/the‐history‐of‐indias‐disability‐rights‐ movement/#:~:text=The%20last%20decade%20of%20the%20millennium%20brought%20drastic,for% 20protection%20and%20recognition%20of%20their%20human%20rights.

Voices from several Parivaar members and parent advocates Voices from several self‐advocates and disability rights advocates

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Appendix UDAIPUR DECLARION OF SECOND SAFI NATIONAL CONVENTION 2015 We, the Self advocates gathered at Udaipur, Rajasthan, after careful deliberations and discussions issue the following statement that we wish to pursue categorized in broad areas as indicated below: DECISION MAKING AND LEGAL CAPACITY: We are aware of the consequences of the recommendations that we have made. This can be achieved only when we have the support of the family, community, government and other stakeholders.  Right to marriage: This is a subject that our families have a lot of ifs and buts. We want our families to think about this issue with all seriousness and openness. We need legal protection and adequate safety measures by the government. We should have the right to select our partner when proposal for marriage.  Extensive use of internet for communication: People with Intellectual and developmental disabilities have different levels of communication. They must be provided with various options for communication.  Opportunity purchase of essential needs: Seldom families trust us when it comes to making choices for buying essential needs – not only for self but also for families.  Opportunity to travel independently: Many of us can travel independently or with our friends.

Families should provide maximum support for us to travel. Government should also provide concessional travel facilities.  To be consulted when decisions are made for me: There is very little communication between the family and the individual with disability. All decisions are made without even the cursory consideration that I may have an opinion.  Education is my right: Most of us especially in rural and semi‐urban areas have very little opportunity for appropriate education. We want to go to schools that my brother or sister go to. Special education in segregated setting should be the last choice.  Job according to my interest & ability: 99.9 % of us do not have any access to meaningful employment. Those that of us who are employed are not even paid minimum wages which makes us very dependent on our families or other service providers.  Right to have an account, operate and spend my money: We do not have the right to hold bank account or bank card. We demand that we hold our own bank account and spend our money without undue interference.  Right to choose my friends and community: We are friendless and our only association has been with our family members and siblings. Families should let us to develop social network that will be more supportive of us in the future.  I have right to spend my time alone and whatever I want. Ex‐playing listening music, watching TV etc.

Privacy is taken for granted when it concerns us. We need our own space in the family, to privacy and freedom to enjoy what we like.  I have a right to choose my dress, food and everything should be my choice: My capacity to make choices begins with small things in life when i can make simple choices which leads to developing greater ability to make difficult decisions.  I want to do business independently: Open employment in government is absent in government or in Industry. Majority of us will remain outside the labor market. Therefore self employment in agro‐based vocations, SHGs will benefit many of us. Skill building programs should include such activities.  Lead independent life: It does not mean that we want to be left alone. Community based living options.  Law enforcement agencies should take the complaints of PwDs seriously and act upon it on priority.  Treat our parents/ organizations respectful manner‐ representation on all policy making bodies as our spokespersons/ allies.  We can fight against violations against us when we are united in group and result will come. Support promotion of SAFI at all levels.  We should have right to property and to buy or sell it.  Sexual harassment of PwDs should be treated as grave offence attracting maximum punishment under law.

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 We wish to be representative in legal matters that affect us.  Insurance policy as available to all.  Helpline should be established at the state level .  Free hospitalization in private & public Hospitals through appropriate Health policy.  Access to holy places and easy access.  Enforce 1 %reservation for persons with intellectual and developmental disabilities as proposed in the new RPD Bill.  Reservation of housing in all housing schemes of the state & central government.  To access inclusive education , appoint more special educators in schools.

POLITICAL PARTICIPATION:  Demand for National ID Card: This could be one window service.  There should be uniform pension across the country without income limit. We should be treated as individuals not taking family income into account.  Accessibility: Universal accessible design in all public places, clean toilets etc. Enforce building laws both private and public utilities that conforms to standards.  Right for equal wages  To be job holder: Equal right to employment  All PwIDDs should have a voter ID, voting right and choose my leader  Be our own spoke person: We should be consulted on issues that affect us at all levels.  Of course we want and we have right to be in politics for good things that we can do for our community. (if we come in politics) o we can do our best to fulfill the aspirations of Pwds o We will work towards employment of PwDs o Ensure equal opportunities to all people with intellectual and developmental disabilities. o We will ensure opportunities to study in inclusive education system/ or special education as may be needed. o Appoint a self‐advocate as a member/representative in all consultative bodies of the government. o

Recognition of SAFI as a legal representative of PwIDDS by governments at State and Centre.

PROMOTION OF SAFI:  Expand SAFI in all states supported by government  Create awareness about capabilities of PwIDDs  Not to be neglected or over protected  Opportunity to train ourselves to be our own advocate/ spokesperson  Organize capacity building training program for PwIDDs  Leader should be us: We want to be our own leaders o skill training program and small workshops for self advocates  Publish SAFI directory all India level  use of twitter for group sharing  Gender specific events for male and female SAFI members.

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