The newest Make/Shift has a great interview with Mia Mingus, a “twenty-seven year old queer, disabled, Korean transracial adoptee” who is the co-director of Reproductive Justice Now!. Mingus’ interview is excellent and covers a lot of ground.
The whole interview isn’t available online, but Aaminah Hernández quotes a passage:
… I was taught to claim my body as a girl, female, woman, but not as a disabled person. When it came to my disability, my parents looked to doctors, health-care providers, medical experts, and brace makers. I was not the expert on my body; they were. No one ever connected that my experiences with teh medical industrial complex as a disabled child would ultimately discourage me from seeking medical services (reproductive or not) in the future. Or that standing in my underwear in front of male doctors as they studied me was no different from standing in my underwear in front of any old men as they studied me.
For years I wore a brace on my right leg. I had some that went from my foot to my knee and some that went all the way up to my hip. My braces were made of plastic and/or fiberglass. In the Virgin Islands Caribbean weather, they itched, pinched my skin, and gave me painful blisters. When I wore them, I could hear horrible brace makers’ voices in my head: ‘that’s an ugly walk,’ ‘walk down the hallway again – and this time, try to make it prettier,’ ‘don’t worry, you’ll be able to hide the brace under your clothes – boys won’t even know it’s there.’
The invasion of my body at such a young age by people who never engaged with me about what I felt being told that my body was ‘wrong’ and ’something to fix’ over and over again…The ownership and entitlement of the medical industrial complex of my disabled body is, in my mind, no worse than the ownership and entitlement of the system of white supremacy of my body of color, or the ownership of the system of male supremacy of my female body. In fact, they are so connected and mutually interdependent that they are impossible to separate…
… The way in which I was receiving care was not about actually caring for who I was, but about making me fit into the mythical idea of ‘normal’ – and of course it was assumed that being ‘normal’ is what I wanted. I think one of the key issues for me around receiving medical care is that it is already working from a paradigm of ableism that pathologizes bodies. It’s not to say that all medicine is bad, but more that the particular way that I got treated as a disabled woman of color was about ‘fixing’ my body, as measured against an ableist (racist, sexist, heterosexist, etcetera) standard of what was ‘right.’”
The interviewer was Irina Contreras.
Having worn an orthopedic brace for a year when I was thirteen, I can really identify with what Mingus says here. I have scoliosis, and when I asked my doctors what would happen if the condition got worse, all they had to say was about what I would look like. It wasn’t until years later that I found out that scoliosis can affect lung volume and damage organs if left untreated. I didn’t even realize what effect it could have had on my ability to walk, or that it could result in chronic back pain. All the doctors wanted me to know is that I would look misshapen and ugly and that “everyone would be able to tell” that I had scoliosis if I wasn’t treated.
It was definitely about “fixing” my appearance so that I would be acceptable, and not about treating a condition. Certainly appearance was important to me too, as a thirteen year old girl (and still is, I admit; I’m glad that I’m not seriously deformed). However, my doctors emphasized my scoliosis as an aesthetic rather than a medical problem. Because of them, I feel self-conscious when I think that somebody might notice that my shoulders aren’t straight or that my rib cage sticks out a little more on one side. These are things that other people have never pointed out to me and I don’t think I would have even noticed myself if doctors hadn’t obsessed over the aesthetic consequences of my scoliosis.