Sometimes I have something to say, and here is where I say it. Lots of talk about disability, Ehlers Danlos syndrome, general geekiness, family and friends, and whatever shiny captures my attention at the moment.
I am impressed with Kellie Lim, who was just graduated from medical school at UCLA. When I think of all the people who must have stood in her way, especially while she was getting her education, I am impressed with her ability to get things done. The biological sciences department at the institution where I work is notorious for declaring ahead of time that people with severe physical disabilities simply can't do the lab work. I'll be sure to pass Dr. Lim's story on to them.
Before MD was diagnosed with HEDS, she was seeing a podiatrist who, not otherwise knowing what he was looking at, was at least able to say that under no circumstances was she to either run or jump until she had finished growing. (At that point, she was walking on the outsides of her feet, with her soles turned inwards.) Armed with this doctor's order, and soon by other doctors giving the same order, we were repeatedly assured that she would only be given activities that were safe for her to do.
That never happened. She constantly was told to do what the other kids were doing, which was always running and jumping. There were so many injuries, I begged that she be allowed to substitute some other activity for PE. Eventually, the school district conceded, and I paid for activity lessons privately, getting the teacher to sign off on the proper forms. I always thought it was foolish to require a child who had to spend an hour every day doing physical therapy to also have to do a "proper" activity, but that was as far as I could get a couple decades ago. It wasn't helped by the fact that, back then, even though I had access to the internet, there was virtually no information on EDS available on the web, and even less on IEP. MD's school district made it plain that no "special" services were going to be offered to her unless she transferred to the "special" school.
It didn't help that the best advice the doctors could come up with regarding HEDS was to avoid doing anything that put impact on the joints. It was hard to go to the school with such vague recommendations. It also didn't help that I was a single parent, trying to keep things together and still expected to somehow find time to jump through each and every one of the school district's infinite number of hoops. Or that genetics had caught up with me and I was also falling apart physically.
I hope that schools have changed, and also that the newly available information makes some difference. While the opportunity for education and socialization in the schools is wonderful, when MD and I look back on her childhood, neither one of us feels any nostalgia for the school bureaucracy and its drive to make sure all the pegs were round.
I found, via Grand Rounds, a post at Universal Health all about the problem of Villainizing the Vulnerable in medical care. I have to say, I had never before thought of the problem in terms of Milgram's Obedience to Authority, but it sure does explain a lot.