Same old, same old

[nightengalesknd]

Today I attended a conference largely aimed at parents of children with a particular condition. The specific condition doesn’t matter here. The information sheet handed out about the agency that sponsored the conference, an agency which, I might add, does a lot of great things, wrote that this condition is “one of the most devastating of all”

Comments

[wotyfree]

Have you ever read _With Love From Karen_?

That book meant a lot to me because... _Karen_ was all about therapy and miraculous recovery. How she learned to walk, and learned to walk up stairs and how she learned to write.

And then _With Love From Karen_ was largely about the price of that being very, very high. And their decision to stop therapy. And the book ends with her deciding not to walk anymore.

I didn't understand why that meant so much to me. I do now.

[nightengalesknd]

I have read both Karen and With Love From Karen many many many times. Most recently, last month

[wotyfree]

Yes. It was an honorable mistakes at the time, I think. I think Karen got hurt badly by it. But it wasn't the same as someone doing that now. They didn't know better.

(I think insisting that she learn to write before letting her get a typewriter was much less defensible though.)

[nightengalesknd]

Yes.

And both things still happen now. Well, for typewriter, substitute computer/iPAD/dictation software. But yes.

And as badly as Karen got hurt, I suspect she fared better than many many of her agemates with disabilities because her parents generally made a good faith effort to consider her as a whole person. They even sought the input of disabled adults - something we still have difficulty getting most parents to do.

[wotyfree]

Yes, definitely. I didn't mean that as an attack on them. I think they pretty clearly did the best they could.

I wish parents would learn from that part of what they wrote. They were always very, very clear on the fact that she was a person. (Much more so than the people who would get all offended by this book because everyone calls her a CP.)