Monday, January 5, 2009

“I used to have Down Syndrome”

Last year I posted about a yearly speech I give at a local institution. Well, this week I WAS invited back. The content of my talk was the same, but I had a few rough moments. You see, there was a young lady with Down syndrome in the class.
This young woman is quite accomplished, and is sitting in on the classes of teacher education. So during those few tines that I was quoting certain studies, and needed to mention the amount of “retardation”, I felt rather bad. (I apologized for using the term, and said that I was using it purely in a clinical way.) I certainly didn’t want to hurt her feelings.
She surprised me by approaching me after the class (even though she had slept through part of it). Then she appraised me that “I used to have Down syndrome.”, explaining to me when she had been cured.
This gave me real pause. I refused to say “How nice”, not wanting to be a party to the lie, but felt that it was certainly not my job to set her straight.

-What parent lets their child think that they have been “cured”? Why do they feel the need to do this?
-Doesn’t this actually show an unwillingness to identify with the reality of who you are?

This lady volunteered to come spend some time teaching Ricki, and I accepted. I know that she has had experience teaching teens with Down syndrome. But I think I am going to ask her not to mention to Ricki that she was “cured”. I don’t want Ricki to pick up this attitude. And I hope to unobtrusively keep an eye on what goes on. I warned her that Ricki might not be so nice to her at first. But by all counts, I am looking forward to seeing more of this young woman. This should be very interesting. And I am pleased that Ricki will gain exposure to someone with Down syndrome who, for once, is smarter than she is.

1 comment:

Anonymous said...

I have never heard anything like this! I recall in the book "Let me Hear Your Voice" when the mother received gasps of disbelief when she said her daughter had been cured of autism, since the listeners were sure it was incurable. (I don't necessarily agree with the author of that book. My rational response is that while autism may indeed be incurable, the diagnosis of autism is not a sure thing, unlike the diagnosis of Down Syndrome, so that children who may have appeared autistic may not be, or may only be autistic to a small degree.) But I've never heard of anyone claiming to be cured of Down Syndrome!