Volume 8 Issue 2 - January 15, 2011

“The law drafters have made it clear that they are on the side of care givers’ interests,” Bhargavi Davar

Bhargavi Davar
Bhargavi Davar

In a Nation that has archaic notions on people living with mental illness, where so-called people with unsound mind are not even allowed to vote, finally a user survivor was able to serve on a Government Committee the one set up to draft the new disability law. However, Bhargavi Davars stint at this new found progress was not only short lived but also very bitter. In this write up for D.N.I.S., she gets candid about her experiences in the Committee heavily dominated by caregivers and veterans who are supposedly writing a law upholding the letter and spirit of U.N.C.R.P.D. while crushing the voices of people with disabilities.

As a member of N.A.A.J.M.I., I was euphoric to be nominated by D.R.G. and friends in the disability sector, to the new disability law committee. Earlier events and supports received from various groups, particularly, H.R.L.N., C.B.R. Forum, D.L.U., D.R.F. partners, human rights sensitive M.H. groups and various other allies in the country, made me confident that I would be able to contribute to the disability law as a representative of persons living with a mental illness (P.L.M.I.) and other psychosocial disabilities. I knew there were huge differences to be settled across the disability sector, but friends and peers in the disability movement as well as the M.H. sector were open to listening.

The first months in the committee were productive. I felt useful contributing to the section that mattered most to high support needs group: legal capacity and civil political rights (L.C. and C.P.R.). The sub group meetings and working with Rajiv, Syamala, Dr. Govindarao, Jayshree, Gadkariji, Pavan, Meenakshi and others led to enriching development of thoughts and ideas on L.C. and C.P.R.. These have gone in as such in the final draft legislation, with the legal consultant searching out new legal solutions to embody some of the rights we were asking for: As promised, so delivered, in this instance.

I had raised questions about participation from the start. The committee leadership had given out ambiguous messages to civil society: kabhi hahn, kabhi na! I asked for clarity on participation and chalking out a clear route to process. As a P.L.M.I., participation and inclusion is the most sensitive issue for me. Given that the committee was from the start imbalanced in terms of representation by persons with disabilities, leadership should have been most sensitive to the issue.

But things just got worse, despite many of us asking questions: Why people should not attend the committee meetings, or N.A.L.S.A.R. meetings; what are we doing about the suggestions received, where are they getting embodied; are we being fully transparent about our decisions, such as on the hybrid law; etc. The disastrous September meeting led to further defensiveness from the side of the committee.

In the meantime, N.A.A.J.M.I. consolidated its position on full legal capacity and one comprehensive law. The numerous questions that came from the sector on the comprehensive law were not frontally addressed. There was great confusion on what exactly is the mandate of the committee. Again, kabhi hahn, kabhi na... in typical care givers style, we were left confused as to where we stood in the relationship! Sometimes discussion allowed, sometimes not. Why allowed, why not allowed... dont know. Our critical questions, asked as professionally as possible, were doused with administrative or personalised responses.

As a P.L.M.I., I am acutely sensitive to such strategies, where people leave you hanging in the air with their silences, circuitous responses, mixed messages, directives without explanations, or just solid muscling using the powers vested in them. E-mails, s.m.s. texts, etc. sent were not answered. Silence is powerful, as every child who has lived in an oppressive household will know. I realised that questions that came with integrity and thoughtfulness from the sector were given some superficial response on the Auto-responder. My suggestions on bridge building with D.P.O.s were not considered important. Anyway we are all circulating everything, na, so why are people complaining? was the standard response.

Some effective leaders of the disability sector were demonised, and labels were stuck on them (again, labelling is something I am extremely sensitive to). If a criticism was raised within the committee room, we were running the risk of being branded as belonging to that group. My point was, if that group has so many supporters from around the country, the committee should stop and listen to that group instead of demonising them. Such negative communication just led to more us and them feelings. When openly demonising e-mails started going out, I felt that personal vendettas should not be brought in within the committee room. Disabled people were angry for very justified reasons, as every P.L.M.I. knows. If that anger is going to be misunderstood and misinterpreted by care givers, that is a bad situation. The reactiveness of care givers who are committee members and executing a responsible public function cannot be condoned.

Soon, I realised that the majority vote was going to win the day, and we were, like, a handful of people who were with a disability along with one or two very strong supporters of disability experiences. Since the committee did not have a clear and minuted process on decision making (kabhi hahn, kabhi na...!), and it was largely left to what was heard the maximum from around the table, it was going to be win-lose on critical issues such as inclusive education and full legal capacity. Things just became worse with committee members (care givers) sending out really negative vibes and strongly worded e-mails reacting to people with high support needs. Some senior committee members put out contradictory e-mails on the one law, many laws issue with so much force that it all became so very confusing. I feel that some care givers who are committee members have to apologise for their really deprecatory e-mails.

All in all, my expectations from process have not been met. In neglecting the comprehensive law question, and greatly resisting legal options of putting in the National Trust Act, the R.C.I. Act and the Mental Health Act in the mother law, the law drafters have made it clear that they are on the side of care givers interests: viz. overprotectionism, use of force, protecting the established turfs and fiefdoms under the Mental Health Act and the National Trust Act. People with turf issues on these laws are sitting in the committee today: some 6-7 care givers of so called high support groups, including the chairperson. We have left and will not go back. The dice was loaded against us.

I will not work for any government committee in the years to come, especially one which is evidently powered by care givers. The P.L.M.I. of this country, along with brothers and sisters who are intellectually disabled, are my friends and peers. I will work more to mobilise them, and build the self advocacy movement. Please excuse us if we work very hard in future to bring down the familial barriers. The committee room is an excellent example of how those paternalistic barriers hugely exist. I thought this was peculiar to the M.H. system: evidently not.

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