I just watched a documentary about adults who have deformities due to their mothers taking thaldimide during pregnancy. For those of you who have never heard of this drug, it was given to some pregnant women to calm them down, and it was popular during the 1950s and into the early 60s- even after it was known to be dangerous and cause birth defects and deaths of babies.
So there are adults now who have almost no arms, and some with little to no legs. At the time of the filming of the documentary (within the last few years) the company who made (and profited from) the drug still had not apologized for keeping a drug they knew to be harmful on the market. The people on the film live in Germany and England, so they get some government funds for their disabilities, but they still have not received any compensation from the company for their injuries.
But my problem with this whole thing had nothing to do with the injustice done to these people or their families. My beef was completely with the spin on this- and almost every other documentary I have ever seen about disabled people. Person after person was asked, “If you could change your condition, would you?” And every one of them said no.
Now these are people who can barely live their lives. Some of them have managed to find partners or find hobbies, but a few were desperately lonely. Their day-to-day existence was fraught with torturous work-arounds for things most people take for granted, like lifting a cup to their mouths to drink, yet each person said they would stay the same if given the chance to have a “normal” body.
Sorry, but I call bolshevik on that. I can tell you that, at least in my own life not a day goes by that I don’t wish I was well, and you may say that means I haven’t accepted my condition, but in truth, why should I? Why should I accept that I have a substandard quality of life and if there was a magic pill to take that could fix that it wouldn’t be an awesome idea to take it? Why is it that people think suffering is inherently noble and that being at a disadvantage but then pretending you like it that way and it’s to your benefit is a good thing?
I would love to hear a disabled person say, “Honestly I would love to _________________________ (hear, see, walk, think better, not shake, whatever…), but I try to make the best of the life I have. Really this is hard stuff, but I don’t want to complain all the time.” Because I feel like that’s real life. That’s the truth. Is it true that some people wouldn’t feel like themselves without their hearing aids or their arm braces? Sure. and I know that in some communities where there are surgeries to correct certain things (like cochlear implants for some kinds of deafness) it is very controversial. But as a person who faces obstacles that are beyond my control every day, I will tell you that it’s awful. And if I could be better, I would feel like a better version of myself. Not like a sellout to who I am meant to be. Deep down, I don’t feel like I am a hero for staying in a compromised position. And I am not persuaded that I should.
I don’t understand at all why the only acceptable version of a disabled person is the one who smiles and sucks it up and tells you how A-okay they are with their lot in life. Please forgive me for this comparison, but it reminds me of the very old depictions of black people in movies where the only “good” black person was subservient boot-licking yessuh, nossuh… with no free will and no ability to voice discontent with their position in the world.
Forgetting for a moment how disabled people are treated by others in society (sometimes better, sometimes worse- often depending on how “ugly” their disability is), I am more concerned right now with how I, as a disabled person feel in my own skin. And I feel horrible.
I feel guilt and shame and disgust and sickness and pain and discomfort and any number of other unpleasant adjectives that people don’t like to discuss because they would rather see the sanitized movie version of the disabled hero who can climb the mountain in spite of being in a wheelchair (currently there is a commercial for a granola bar featuring a man climbing a mountain with his daughter and hanging over the edge appreciating nature. It’s all very breath-taking considering- as the commercial tells you- that the man is completely blind…), or be an Olympic swimmer in spite of having no legs, or doing some other fantastic feat that would be beyond the ordinary even if the person was able-bodied. But now it’s not enough for us people with disabilities to make it through the day- we also have to do it with a perfect 10 in gymnastics and wearing size 2 jeans. Oh, and we have to have a super-positive attitude while doing it too.
Sorry, but I don’t want to play that game. It’s hard enough to just be a person in the world with all the baggage that attaches to that. I don’t need every documentary about disability to also tell me (never outright, of course) what an abject failure I am for not embracing how fabulous it is to be disabled. Yeah! It’s the best thing ever! I wouldn’t give it up even if you paid me!
I don’t know where I’m going with this post, except to point it out and to call it out for what it is. Accepting yourself is great. Failure to embrace real people is a failure of us all. I think it’s important to be aware of the subtle messages we get so we have a choice to accept or reject them in a conscious way. This one, I reject.