It’s a term we hear over and over again in relation to disability.
As in, for example, gene therapy giving “hope” to the blind. Or ABA treatments as “hope” for “overcoming” autism.
Could it be that we’ve got it all wrong?
I’m in a unique position. You see, I’ve been recently told that I may possibly have a kind of invisible disability – asperger’s syndrome. And I’ve grown up around people with disabilities all my life. I went to an elementary/middle school with a sizeable Deaf department – I was even a reading buddy to two students in a primary Deaf class. When I went to high school, I went to a high school with an even larger Deaf department. In fact, a couple of my close friends are Deaf.
I think I learned from a young age that people with disabilities are just that – people, who happen to have disabilities. I didn’t see someone who was Deaf and used sign language as someone to be pitied – rather, I saw them as someone who simply communicated in a different way when I did. This also why I think I’ve been more relaxed than most in facing the posibility of having a disability myself – I’ve always seen it as just a different way to be.
I guess that’s why the ableist attitudes of the general population boggle my mind sometimes. I remember, a few months ago, I was watching some YouTube videos with a young girl a few years younger than I am. I’m not sure if “babysitting” is the right word – she was 13 years old at the time. We were going through our favorite YouTube videos, and I asked her, “Want to see this video of a really awesome wheelchair dance troupe?”
“Oh, no!” she said. “It would make me so sad!”
I was a little taken aback by this comment. Here I was, trying to demonstrate people with disabilities being involved in the arts, and all someone could see was a group of wheelchairs. And, automatically, using a wheelchair was deemed to be something depressing.
This kind of prejudice has seemed to extend to a phobia, of sorts: the fear of tubes. I can’t count the number of times some well-meaning (although ableist) liberal has said something to the effect of, “Someone who needs tubes to eat/breathe/pee must be suffering horribly! That’s not a life!”
Crip Chick wrote this brilliant post a while ago and I think it hit the nail on the head.
More often than not, wheelchairs/feeding tubes/catheters/ventilators make life better for people, not worse. Let me share a little story with you. I was born with severe kidney reflux and had a bunch of malformations in my urinary tract. I’m fine now, in case you were worried. But when I was really young (2 or 3 years old), I had surgery to fix my urinary tract. And, as I recovered from surgery, I had to use a catheter while my urinary tract healed.
That’s right, folks, peeing through a tube! (I realize this may be a little too much information, but it’s being used to prove a point).
Although I don’t remember much of that point in my life, I highly doubt I was miserable because I had to use some kind of assistive technology. Life is better when you can, you know, pee without excruciating pain.
The thing is, I don’t think anyone assumed my life was automatically miserable. Because, despite my medical issues, I was percieved as simply being another able-bodied kid. The truth is, most of us will end up using some kind of assistive technology in our lifetimes – if we get injured, contract an illness, have surgery, etc.
But for some reason, we assume lives of people with disabilities, especially if they have to use assisted technology, are not worth living. That’s called ableism. Or disablism, if you live in the U.K. Often, it’s purveyed by otherwise well-meaning people, who assume that it’s simply awful to live a life like “that”.
This brings me to the term that’s being tossed around – “hope”.
“Hope” to eradicate disability.
Attempting to make someone’s life easier is one thing, but often it descends into a ridiculous amount of pity. Pity is a useless emotion. And it’s often dehumanizing to the person being pitied. It’s as if to say “I’m going to pity you, because obviously you’re less of a person than me.”
I see a different kind of “hope” for disability. I wish we had a world where disability, perhaps, still exists, but people with disabilities are accepted. As people, not some specimen to study or something to be pitied. And I wish we had a world where we could accomodate people with disabilities, rather than expect them to conform to our ideals.
What kind of “hope” are we seeking?