This link appeared on a Facebook page that's used by people who want to talk about the development of the NDIS (National Disability Insurance Scheme) here in Australia.
http://www.nytimes.com/2013/10/10/garden/the-architecture-of-autism.html?pagewanted=all&_r=0
The person who posted the link wondered if the introduction of the NDIS might mean that places like this would be built here and asked what people thought about it. I posted in my usual smart alec-y way that it was an institution...didn't matter how lovely the building was...(the report describes it as 'visually stunning')...it was still an institution. The implication of my pithy retort being that institutions are A. BAD. THING.
Clever old me, eh.
Always willing to share my thoughts and ready with the bon mot! Subject closed, done and dusted...who could fail to be convinced by my penetrating insight...
Well, the Mother of a young man with autism disagreed with me. She wrote that there needed to be somewhere for him when she was no longer around and that where she lived the options around more independent living were very limited and only worked for people who are 'more able'.
I started a response to her via the Facebook page...and then stopped...
I can't imagine that what she needs is to hear another lecture. I'm pretty certain that she will have heard the arguments before. She just hasn't been convinced yet for her son. And I wonder how this can be...
What are we not getting right here?
The arguments against institutional life are compelling...research has blown apart the myths of safety and security.
If you are not convinced by the research, there are...right now...in the 21st Century of whatever country you live in...thousands of people who will tell you why they never want to go back.
They carry stories that will break your heart. Stories of separation, loss and loneliness.
They carry stories that will make you weep. Stories of indifference and invisibility.
They carry stories that will make you burn with anger and shame. Stories of cruelty, neglect and abuse.
They have new stories to tell now. Stories of warmth and understanding. Stories of love and family. Stories of freedom and potential. Stories of security and growth.
(Read 'No Going Back - Forgotten Voices from Prudhoe Hospital' by Tim Keilty and Kellie Woodley. No Going Back documents the experiences of people who lived and worked at Prudhoe Hospital in Northumberland)
Why are people not yet convinced that life lived fully (but not perfectly) in the company of the great swell of others living fully (but not perfectly) is, for most people, infinitely preferable to the shadow-life of institutional living.
Whose needs are being met in the concept and construction of this...institution?
In the article we can hear history repeating itself...founded by families...based on the idea of an extended family...people who are alike living together... 'they're definitely her tribe'...
I believe that it's important that people are safe. I just don't believe that institutions are more safe than people, in their own place, surrounded by people who care about them.
Institutions, no matter how attractive, are not good for people.
I have no doubt that this Mother loves her son. She loves him more than anyone else does. He is part of her and she feels the pain of his difference and the worry for his future.
Her preoccupation is with a safe life. She's not alone. That is the concern for many families.
What to say to convince her that a good life matters too...
'Tell me, what is it you plan to do with your one wild and precious life?'
Mary Oliver
