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Resource id #4 The ‘lesser’ among the less privileged - Volume 6 Issue 9: Disability News and Information Service for India

Feature

Volume 6 Issue 9 - October 15, 2009

The ‘lesser’ among the less privileged

Mental illness in India has a huge taboo, ignorance and terrifying superstitions attached to it. The memory of Erwadi, where 27 women with mental illness were charred to death as they were chained to their beds while the building they were in caught fire is long forgotten. While the fate of mentally ill people continues to be dismal, Dorodi Sharma of D.N.I.S. takes a hard look at the debate raging in the Indian disability sector whether or not mental illness should be included in the National Trust Act.

The Indian disability sector has many things to be proud of. Like the paradigm shift from charity and welfare mindset to a rights based attitude towards disability. Or the shift from the medical model of disability towards the social model. Even the whole mantra of inclusion, for that matter. But despite these evident paradigm shifts, there still are many things that we cannot be proud of. The condition of people with mental illness for example. Or the segregation that they still face. And segregation not only from the rest of the society but also from the so called champions of ‘inclusion’ within the disability sector!

If one goes by statistics, at any given point of time, around 5 percent of the country’s population is afflicted with mental illnesses. The change to a rights based outlook also brought about rights based legislations. While people with physical disabilities got the Disability Act of 1995 and those with autism, mental retardation, cerebral palsy and multiple disabilities got the National Trust Act of 1999, people with mental illness continue to remain ‘invisible’.

There is a huge stigma attached to mental illness in the society. The fact that a person has mental illness not only makes him or her an outcast in the society but also ostracises his/her entire family. While the Disability Act ensures job reservations for people with physical disabilities, people with mental illness run the risk of losing whatever employment they may have if their condition becomes known!

From small towns to metros, how many of us have seen mentally ill men and women roaming the streets and obviously vulnerable to exploitation? How many of us have read about people with mental illness being locked up like animals? Despite the undisputable fact that it leads to such obvious ‘handicaps’, this is what President, Parivaar, J.P. Gadkari had to say. “Mental illness is not a disability; it is an illness, a disease. It was a mistake to include it in the Disability Act!”

However, mental health activists strongly differ from this point of view.

“If you compare autism, cerebral palsy and treatment resistant mental illness, they all fall in the same category and need guardianship,” said Akhila Charagi of Nodal Association for Mentally Ill (N.A.M.I.). Gadkari feels that people with mental illness already have the Mental Health Act of 1987. In doing so, he neglects the fact that this Act is a medical one and not a rights based one.

While the National Trust provides guardianship and supported decision making structures, there is no legislation or statutory body at present that provides this to people with mental illness.

“Where do mentally ill people who are thrown into the streets – women, elderly, men included, go?” questioned Charagi. “Is anyone trying to understand the enormity of the problem?” she added.

So, why is there such a resistance to including mental illness in the National Trust Act?

“It is probably because the leadership of the intellectual disability sector is feeling threatened and believe that it will reduce their cause,” said Charagi.

Or, is it because of the Rs. 100 crore corpus fund of the National Trust that a few already in control do not want to share? If so, then all the paradigm shifts that the so called disability sector leaders do not tire of crediting themselves with, will come to a naught. If so, then the sector will be pushed back another 20 years, when cross disability was unheard of and each disability would look at the other as a possible competitor for grants and money. And if so, then it would be nothing short of a travesty.

In the last few months, the demand to include mental illness in the National Trust Act has become louder. Along with this, the pressure on National Trust to not include mental illness is also increasing. The National Trust has more than 800 N.G.O.s registered under it and all with voting rights. Apparently, these organizations are pulling the strings real hard, especially with the elections to the Board being in process! Although organizations working for mental retardation, autism, cerebral palsy, etc., vehemently refute this allegation, popular feeling in the sector seems to be telling a different story.

Disability sector leaders opposing the inclusion are now engaged in futile academic delusions and discourses which serve no other purpose but fill reams of papers with tongue twisting words and irrelevant information. And while the debate rages on, the National Trust has put up an opinion poll on its website with the question “Should National Trust Act include mental illness?” This has left people fuming.

“Is this a cruel joke or is it supposed to be a participatory exercise? It is a discriminatory question. It is against the spirit of U.N.C.R.P.D. National Trust is not an insensitive television channel. Fate of people with mental illness has to be a considered legal and policy decision and not the outcome of some public voting,” said Dr. Achal Bhagat, Director, Sarthak, in a strongly worded letter to Poonam Natarajan, Chairperson, National Trust.

Will the National Trust not include mental illness under its Amendments if there are 101 votes opposing inclusion against 100 votes advocating for it? And what about engineered votes? While the jury is still out, it is time for the disability sector to introspect. We lament the lack of inclusion in our society but have we risen above our own inherent prejudices? We talk about U.N.C.R.P.D. and jargons like ‘inclusion’, ‘social model’, etc., but have we ourselves moved beyond ‘We, the hearing impaired’, ‘We, the visually impaired’, and so on to ‘We, the disabled people of India’?

We want to be safely cocooned in our own bubbles, afraid that the other would take away our share of the pie. Isn’t it time for us to demand that the ‘pie’ be made bigger?

Yes, indeed it is time. Time to rethink, time to be less hypocritical and time to practice what we preach. After all, the only place a myopic vision will take us is a place the sector has been through decades ago. And a place no one wants to be now!

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