We all make decisions in life- about what we want to do, what we want to study, which doctor to visit, how we spend our money and so on.. Making our own decisions gives us a sense of independence, solidarity, even individuality.
Adults with an intellectual disability also like to make their own decisions. When given an opportunity they also express their desire to do specific things, interact with specific people or go to a specific place. They too can dream.
However, in today's society they are often not given the opportunity. They are not given a voice. Even when given a voice, they are not allowed to make decisions about their own life, or future.
Take it a step further. A bank often does not allow a person with an intellectual disability to manage his own finances. The doctor does not get consent from , or a landlord will not enter into a contract with a person with intellectual disability.
That is where Guardianship came into the picture. A guardian being , ideally, a caring adult who makes good decisions and enters into a contracts on behalf of the person with disability. The guardian manages the person's money and property, decides where he should live and what he should do with his life.
Guardianship posed a problem. The person with interllectual disability no longer had a voice. The guardian talked to the community on his behalf , even thought and decided on his behalf.
Is that fair? Doesn't every human being have a right to make their own choices? The UN convention on the rights of persons with disabilities protects the rights of people with interlectual disability and states that they enjoy legal capacity on an equal basis with others. It also mentions, that the state will also provide them support, when required to access their legal capacity.
Supported legal capacity starts with supported decision making, a process where you support individuals with intellectual disability instead of making decisions for them. How can we support? It can be through providing a way to communicate, or also by helping the person go through the entire decision making process.
Inclusion International has been working on creating awareness and legal systems to allow for supported decision making and are starting a pilot project in association with Inspiration , right here in Dehradun.
In the project, the aim is to help the person with intellectual disability choose a few trusted people to form a network. This network in turn, helps the person think about his future and make decisions.
A group of people consisting of parents, professionals in disabilities ,and representatives from different NGO's in Dehradun ave now designed an outline for this pilot project to be carried out in the coming year. The pilot will hopefully, give us many answers about how this concept works in India- is it feasible? Acceptable by the Indian society? Will it work? We hope that during the course of this project, as we face problems and find solutions, we will find a suitable model of supported decision making that will encourage people with intellectual disabilities in India to dream, and to live out their dreams.
What are your opinions on this concept? This project? Can this blog be a place for us to think aloud?
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I'm really glad to see this discussion started. I was at the workshop to begin planning for this initiative in Dehradun and I have to say I had/have some misgivings about the idea. Not that there is any problem with supported decision making as a concept - just that I'm not sure we are ready for it here in India. I think until we have the basics in place (early identification, school for every child, medical care, job possibilities, access to public spaces) talking about this kind of decision making seems a bit frivolous.
ReplyDeleteBut Sharon, from Anugrah, who also attended the meeting, pointed out that this kind of approach may at least help parents and professionals begin to think differently about adults with mental handicap. "Maybe," she said, "they will start to include them in the conversation, introduce them to people instead of ignoring them, stop talking about them as if they weren't even there. It could be a beginning."
Sharon is young and still hopeful and idealistic. She made me remember when I was like that. After all, that's how the world changes, isn't it?
Decision making about one's own life - on whatever level, from the food I want to eat to where I want to spend the next stage of my life - enables someone to meet their wants and needs, express their individuality and to gain some sense of personal purpose. And that's even more, not less important for someone who happens to have a learning disability or mental handicap and whose life, in consequence, can end up surrounded by constraints of others' making. Intellectual capacity is not somehow correlated with personal integrity!
ReplyDeleteSo how come we think of teaching disabled children to speak or to move, but we don't give parallel experience in learning how to make decisions? Learning how to make good and not-so-good choices, dealing with consequences, taking others' needs into account - these are all things which can be learned, if only we give children the experiences and the support for them to do this. But we have built 'care' so heavily into our concept of what disabled children need (maybe especially in India, for all sorts of reasons) that we've lost sight of the critical importance of decison making in their own lives - both now and in the future. And special schools are places who could and should be taking this on, working in ways which encourage choices - and the risk-taking whch goes with that - whilst the support and guidance is there.
And yes, making decisions. We HUGELY understimate the capacity of children and adults with mental handicap, by treating them so often as incapable of even contributing to the process, let alone making the final decision. (Talk about a self-fulfilling prophecy: don't give them the experience and the practice just so they'll find it tough like we said they would!) But that's about our limitations in perception, and our failure to give them the building blocks of experience or the means to understand and express the issues. That's about us, not them. Listen to them; don't just dump a process or model on them but recognise that making decisions is something learnt through practice; accept mistakes (don't we all make them?); trust them, and give them the respect they are no less entitled to than ourselves. And get schools, including special schools, on board with engaging and supporting children in participation and decision-making as part of their growth.
And apologies if this sounds like a bit of a 'high horse', but I am saddened at times by our failure to recognise what people CAN do, and to make the connection between how we treat disabled chidren and the capacities they develop as they grow into adulthood!
(By the way, this post comes from someone who's not 'young', is probably 'idealistic' but has also seen mentally handicapped young people acting as capable participants, making sensible, sensitive decisions for themselves and on behalf of others - and who grew in the process, along with the rest of us.)