Too Late to Die Young by Harriet McBryde Johnson

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Another book bought on Oct 25, this one at Modern Times bookstore.

She opens the book by telling us about what it was like for her, growing up with a congenital neuromuscular disease, and then having to watch the Jerry Lewis telethons every year, talking about all the children with muscular dystrophy who were surely going to die (even with the help Jerry was asking for).
Her parents had tried to say, for example, that the boy they talked about on the telethon who had died had some sort of other muscular dystrophy, the kind that kills people (similar to mom trying to tell us her cancer was not the kind that was so harmful).
It just sounds very hard to grow up as a kid - but she did grow up, outside of most expectations, and now has been protesting against Jerry's telethon's regularly for years, and working as a practicing lawyer (and author!) in Charleston, SC.

The other big point she makes here is the "false necessity" of the nursing home and other care centers for the disabled. She is arguing for increased aid for those who need it, so that they can have caregivers in their homes. It sounds like having a small team of trusted people to help with things that she can't do alone, must be cheaper than a nursing home, especially since she can keep working as a lawyer to fund this team.
At one point in the book she falls out of her wheelchair and has to unexpectedly go to the hospital in a town she doesn't know. There's a very real danger that she could fall into needing a nursing home, since the hospital won't take care of her for as long, and she wasn't able to physically get home to be near her team.

And the book is not all policy and argument, by any means, although she loves to talk.
It's also mostly funny. She gets a whole lot of butts out of her face in the crowd at the Democratic Convention, (they end up building a little cage around her to keep people away) and it made me think of how crushed I feel in a crowd, just being short.
She writes also of the joys of zooming along in her power chair on her way to the courthouse in Charleston, and just generally living life, a life that she didn't think she would have this long. She keeps thinking throughout her childhood and adolescence, "Well, I'm not going to live that long, but when I die, I might as well die educated," for example, or "I might as well die a lawyer"...

She just wrote a YA novel about two girls at a "crip" summer camp, which also looks quite good.