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Monday, March 29, 2010

Not Curing Doesn't Mean Not Helping

I was reading a blurb in Newsweek about Ari Ne'eman and how his nomination to serve on the National Council on Disability has a hold on it, presumably because he is against finding autism "cures." I read this comment trying to justify why parents would be upset at his stance:
....we love and accept all the beauty and complexity of our autistic children, and yet we also long to see them achieve at their fullest potential in the world.  We need to work to make the world a more accommodating place for disability; but we also need to help our children perform more independently in this demanding world.


You know what? That's a total misunderstanding of what it means to be against finding a cure. I've met Ari Ne'eman, so I've (hopefully) got some clue about his stance here. Ari was given therapy and supports as a child, and he supports doing that for others. Aversives and restraints, notsomuch. You might say that he longs to "let autistics achieve their fullest potential in the world" and would support helping children "perform more independently in this demanding world. "

Seriously folks, the goals of the neurodiversity movement are not so different than the goals of the average parent. The average parent doesn't want to cure adults comfortable with themselves, and the average ND advocate doesn't want to keep your child from developing and growing.

The difference is that ND folk usually think that "cure" means genetic testing and aborting autistic fetuses.  Parents often think "cure" means finding some super effective treatment for their child, and when they hear someone is against cures, they think they're also against treatment of any sort. That is usually not the case, and it's certainly not the case with Mr Ne'eman.

If we face reality, there is no magic pill or super therapy that will turn an autistic child into a non-autistic child. There is unlikely to ever be such a thing. It would be lovely to have an "easy" button to take what we see as severe hardships and make them go away, but such a thing is a fantasy. What we all really want is to help our kids live up to their best potential and become as self sufficient as possible. That's what disability rights advocates want, too.

6 comments:

  1. Thank you! I noticed you just said some very similar things. GMTA. ;-)

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  2. yes it is well said..I hope that people actually listen.

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