It was recently brought to my attention that a young man with Aspergers has been appointed to the National Council on Disability. But apparently, many parents are upset because Mr. Neeman apparently has expressed concerns about people trying to "cure" autism instead of embracing autistic people for what they are. Apparently, a lot of people think Mr. Neeman is not really autistic enough and that he will somehow use this position to block genetic research. Mr. Neeman, however, it appears is worried that people are traveling down a eugenics path to prevent the birth of people who are autistic.
This seems to be such an unfortunate reason to fight Mr. Neeman's nomination. How wonderful that someone has been so successful despite the difficulties that come with autism. How I would love the idea that some day my son could form a nonprofit group that would fight for federal legislation to limit abuse of restraints in public schools, that some day my son could possibly be so proud of himself and who he is. That some day my son could form friendships with others like himself.
The National Council on Disability has nothing to do with searching for a cure, and everything to do with opening up society, with fighting to stop ostracism of the disabled, with championing the rights of the disabled.
Mr. Neeman is only 22! A child! Of course some of his opinions are over the top, of course he is too sure of himself.
And of course he's wrong if he thinks that most people with autism won't benefit from medical intervention. Most people with autism have a lot of struggles and difficulties in life that are 100% biologically based. Because -- although we like to forget this -- we ARE 100% biologically based. Everything we think, feel, do, is a direct result of something happening in our body, which includes our brain. So ... of course people who can't do the most basic functions that really are important to surviving and thriving in this world without needless anxiety and pain ... they deserve all the help we can afford to give them. Once they are adults they are free to refuse it, of course. And we must be careful not to pathologize temperament, which is of course also biologically based. It is a fine line.
But at the end of the day, does it really matter if Mr. Neeman is wrong about something? He has no power to keep anyone from searching for a cure. But he can do a lot of good. For starters, he can give a lot of people like me hope. And I really need that.
I say, let him be wrong. Let him be gloriously, wonderfully, totally wrong. Let him be on the council, and be wrong.
Thoughts on Newtown
12 years ago
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