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I Have Arthrogryposis, and I Started Personal Trainer School Today!

[image is a really strange 3 tile collage of my enthusiastic made up mouth  overlayed over a white male trainer body coaching push ups on the cover of the NASM textbook]

As of now, I'm a choreographer, dancer, biology and medical anthropology history nerd, and I am just crawling and tinkering and pirouetting and punching and moshing and line kicking my way through life, trying to find the best ways to teach my brain about bodies. I want to know everything about them. Every kind of body. As a personal trainer (and later as an Occupational Therapist, shhh it's not an announcement yet but it's a thing I wanna do), I don't ever want to use ignorance as an excuse for providing inadequate or harmful care. And, I think that as individuals, we should all be armed with the power of our own bodily knowledge. We should get to be the mamas of our own miraculous bodies, and then share the tools to accessing that knowledge without pretense.

The other day I had a really horrible doctor's appointment with an orthopedic surgeon at UW who nothing about my body and didn't do the one helpful thing he could have done as a doctor in that situation, which was read or even bring in my medical chart. When I corrected his resident about a fact about arthrogryposis she had misspoken, he was pleased. But when I corrected him (god/dess forbid!) about a mistaken assumption he had made, he turned to his resident and sardonically remarked,

"Arthrogryposis kids tend to be hyper intelligent, because as children they don't run around like other kids do. They generally sit in one spot and use their brains."

I had a problem with this statement for a few reasons. One, was that I was being spoken about condescendingly as if I wasn't in the room. Two, was that I was getting the "arthrogryposis kids" phrase. Arthrogryposis multiplex congenita is a fairly diverse orthopedic condition which affects about 1 in 3,000 fetuses/infants. There are about 400 different kinds. The two things that all people with arthrogryposis have in common, is the contracture of two or more joints, and the fact that medical professionals don't have much to say to us after we become adults. There are not really arthrogryposis specialists outside of the pediatric realm. When physicians happen to know anything about arthrogryposis, which is rare, they tend to revert to thinking in a pediatric context, drudging up what they remember from medical school, before they definitively chose their discipline. Another quotation I memorized from an orthotist who was fitting me for orthopedic leg braces in 2015 (I was 25) was this,

"You're the oldest arthrogryposis kid I've met. Most of them die really young."

Now, there are some forms of arthrogryposis with fatal complications and outcomes, and this is saddening and matters to me. However, the mistaken idea that most of us die young, comes from the invisibility of adults with arthrogryposis in the first place. Where do we go? We don't access arthrogryposis specific care anymore, so we must be dead.

If I am not dead, then I am a child, a "kid". The other problem with the doctor's statement, is that it forces me to either engage with or ignore my infantilization.

I wondered what he would do if I took it as a compliment,

"Thank you, I am really smart."

"Pretty smart." And my effort to preserve my dignity backfired, because he didn't want me to have it for some reason.

The final issue with his already seeping, infected wound of a remark was that it contradicted another theory of his. He had been disappointed that my feet didn't flex up, that ankle and foot muscles didn't work that way. He didn't ask if I had had surgery on my ankles and feet which would partially prevent this kind of movement (I have), but he also didn't seem to know that the kind of arthrogryposis I have affects muscles as well as joints. Again, he didn't know, and he didn't ask. He just said, "Why can't you lift your feet up? Why can't you kick your legs with more power? Did you used to be able to do that? Arthrogryposis is only supposed to affect the upper body." (According to whom? Amyoplasia most iconically affects the upper body, but if he knew about amyoplasia, he would also then know that amyoplasia affects the muscles as well as the joints.)

Everyone is ignorant sometimes. We are not taught to be very science literate, let alone body literate. It should be surprising that doctors can be this ignorant, but it is not. But what we do when this ignorance is brought to our attention, this is a choice, and this choice matters.

After this weird and triggering experience, I told my partner,


"I want to be an orthopedic surgeon! I'm going to be the best orthopedic surgeon and then that that doctor is going to hear of me and be embarrassed!"

After this weird and triggering experience, I told my partner,

Unfortunately, the truth is that when I say orthopedic surgeon I am imagining Callie Torres, because I do a lot of writing and emailing and blogging and data entry and website editing from home, so I watch a lot of Grey's Anatomy in the background. I want to believe being a surgeon actually involves that much dancing and sex and intrigue, and that I could adapt surgical settings enough to meet my needs as a person who can't stand for an hour at a time, and who has occasional muscle fatigue and loss of control in my hands and wrists, but I wouldn't want to figure that out with an open body in front of me, my anxiety would be through the roof! I can accept that some folks are suited to some, but not all parts of a job. Maybe the orthopedic surgeon I saw last Tuesday is not so great at the talking, listening, and learning with humility aspect of his job, but is really great with his hands and a knife.

I love my body. And therefore I don't need a doctor to give my dignity or self respect to me, but it's hard for my medical trauma body/mind to remember that every time. I love other bodies. I love the way they move, how they don't move, how we can strategize with them and for them. I respect them and the people who operate them and inhabit them, the earth which houses and supports them. I wish to be a part of that inhabiting, operating, loving, and support.

So I'm going to become a NASM (National Academy of Sports Medicine) certified personal trainer for now. I'm going to be a disabled personal trainer who loves bodies. Not to be an inspiration, not to overcome someone else's expectations or to dismantle assumptions, but because I know that I'll love this job. I'm hoping to continue to make good choices on my learning journey. I'm so excited to get started!

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