Hope.
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!”
Umm… what?
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?
Miss Nomered 
Hi! This is wonderful. Thanks also, for pointing out the post from “cripchick”. I just wrote a few days ago about a common experience I’ve had with my family–four kids, two with disabilities (one whose disabilities are pretty obvious). People tend to think our life as a family is awful, and yet they miss out on some pretty great kids with that kind of thought. In fact, the thing that can be awful is that so many people seem to be afraid to get close!… (We do try to work on that, though.)
You are young, and it gives me hope. You write well, and you have a great vision. And by the way, as my son’s psychiatrist put it just today, there are a lot of people with Asperger’s doing great things at Harvard and MIT.
We’ll keep on working, and my hope is not that we can all be more accepting of differences of all sorts, and that we respect and honor the many human experiences. We are, after all, only temporarily abled.
Well said!
Hope — yeah. The kind you are talking about, the kind of feeling I get from reading the posts for today. Because with all of us speaking out, I can believe in change.
WCD
I do think we have come a long way. More than ever we expect people with disabilities to be able to participate in life like everyone else. But I’m sure most people never think about the pity attitude. So good for you for furthering the fight and making people more aware.
Btw, Toronto sounds kind of exciting. I like the country though. Have you heard the Ontario government is working on creating a gender studies optional course and maybe equity studies too to pilot in high schools in a year? I was all on board with the gender studies but now equity studies sounds like it could be even better (if it would be how I imagine it) since I’m hearing more and more about the importance of analyzing how sexism intersects with racism, classism, etc. Of course the even better thing would be to have this as something mandatory in grade 8, 9, or 10. Looking at classism, sexism, ableism, etc is unfortunately an “academic” thing that really only some priviledged people in university get to do in school unless something sparks your interest in these issues. That something is often being affected by that issue so that those unaffected by the issue who need to change don’t hear anything about the problem. Ugh.
[…] Miss Nomered: Pity, Tubes and the meaning of “Hope” […]
Wonderful post! Spot on :o)
i get this about new technology, the belief (especially certain members of my family who just will NOT understand the nature of my deafness) that certain new technology will “cure” me. e.g. digital hearing aids, cochlear implants. Even though i *say* they won’t do any good or completely cure me, they nag and nag until i go. and get assessed. In the case of cochlear implants, i was told that it would be invasive surgery for no benefit. it was only once a DOCTOR had said it that they left it alone. my word isn’t good enough for them. drives me up the frigging wall. (and on a related note the demand “are your hearing aids working?” also drives me mad… yes, dear, i’m the one that uses them, i’d know if they weren’t. it just demonstrates so much about how they don’t understand my deafness..)
*climbs off soapbox*
thanks for an enlightening post…
keth
xx
Great post. Also, I’ve found that people have very simplistic (media-fostered) ideas about medical advances. I have severe Crohn’s and can’t count the number of times that some documentary has been on telly and resulted in me and my family getting phonecalls from well-meaning friends and relatives who have discovered that, OMG, all I need to do is have surgery/a transplant/whatever is media flavour of the month, and I’m sorted!
Er, no. What I find interesting is how this plays into peoples’ expectations; I’ve seen people look sad when I’ve told them my feeding tube is a for-the-forseeable-future thing. Well, I remember life without the feeding tube. I remember the daily struggle to get enough calories, my mum having to watch me waste away, the fights that happened when we were both tense about my eating… now eating can usually be enjoyable *because* the feeding-tube is providing baseline nutrition of the sort I cannot extract from the limited range of foods I can eat with my damaged digestive system.
The feeding tube for me is like… I don’t know; internet for the bowels? :p I mean in terms of offering freedom and possibilities and such.
I get something similar as you get with Crohn’s, only with chronic fatigue syndrome, which seems like the junk diagnosis to end all junk diagnoses, and in my case is applied as an imperfect name for part of something that might be a lot more specific than that, but that does not have a name and diagnostic code of its own yet.
The weird thing with CFS is that everyone seems to know the cure for it, even though it’s not just one thing, and even though most versions of it are not curable by modern medicine. I’ve been accused of not caring enough about my health because I still have it, and told that if I really cared about my health I wouldn’t have it anymore. If I attempt to point out that junk science won’t help me, this just confirms the idea that I “don’t even want to try”, and thus deserve any discrimination I get. If I point out that I’ve tried said junk science before, then I hear that I must not have done it right, or tried it long enough, even if it made me worse (because don’t you know you “have to get worse to get better”?).
It seems as if you’re supposed to devote your entire life to “getting better,” and nothing to just living your life. If you try to just live your life, then that is oddly enough called “giving up”.
I also remember a very odd conversation I heard a long time ago.
Someone had said that assorted autistic people had no right to speak about such-and-such, because we hadn’t had such-and-such experiences (which ranged from sorts of discriminatory treatment, to additional conditions that aren’t autism to begin with). And that, basically, we shouldn’t be listened to, because we had not had these experiences, supposedly.
A few of us wrote an article saying basically, “First off this sort of catch-22 nonsense about ‘If you can’t talk we talk for you and if you can talk you’re irrelevant and continue to talk for you’ is nonsense, and second off here’s a bunch of the experiences we’ve actually had that you’re telling us we haven’t had.”
Some guy looked down the list of medical conditions we’d described in the course of all this.
And his response was something like, “But… all of those things are highly treatable. They can be cured so easily. Why should we listen to anyone who has them and hasn’t bothered to get better?”
So, basically, the things we’d described in ourselves, which ranged from epilepsy to severe migraines to autoimmune diseases to movement disorders that have only recently entered the literature at all and have no name yet to assorted forms of physical “deformities” of bones and joints, are all so easily cured? Then why isn’t there some millionaire doctor out there raking in all the money from this cure? Why isn’t any of this hitting the medical journals?
And, basically, another catch-22: If you don’t have these things, you ought not to be listened to because you’re too inexperienced with these matters, and if you have them and haven’t been cured, you’re too dumb to be listened to. (And what any of these things have to do with autism is anyone’s guess.)
Sorry for the extended rant, I just find this obsession with “Either you spend all your energy heroically searching for a cure or you’re Doomed For Life and probably Really Stupid,” to be bizarre and insulting.
And, BTW, I find catheters really uncomfortable, personally (and came partway out of a delirium in the hospital recently to find that I was yanking hard on my catheter while someone was nervously saying “Yep, that’s a catheter”) but I’d way rather live with one than die, and I do not at all grasp the idea that it’s somehow better to die than to use a catheter. I’d way rather live with the discomfort of a catheter than the absolute hell of not being able to get pee out and feeling it build up in there and knowing what that’s going to do to my system. Yecch.
That was supposed to be a closed parentheses. Not a winky face.
[…] Nomered has written a fabulous an introspective article about ‘disabledism’, assistive technology, and the state of the social […]
keep writing, keep speaking. never stop.
thanks for your activism on disability issues and rights. people often fail to realize that many times it is our human diversity in condition that bring about so many great developments, talents, and changes in peoples way of thinking. we are all put here for a reason.
http://www.queersunited.blogspot.com
Yeah, what’s so bad about using tools, anyway?
Nice post. Thank you. 🙂
Wow, has BADD given me a few good days of reading: this post is insightful and such a critical look at the power of language in developing change.
well-spoken and powerful, as usual. I wish that I had been raised around people with disabilities, because it is sometimes hard for me to eliminate the “pity” factor when i look at a severly disabled person. Luckily I have known for a long time that this pity is hurtful and isolating towards people with disabilities, and for me, only serves as a defense mechanism that detatches me from another human being and takes away my open-mindedness. Still, thank you for the reminder; I think it is needed.
On a sidenote, when I was reading the post by Crip Chick that you linked, this quote made a lot of sense to me: “…we often pin the oppression we face as disabled people as “misunderstanding” and a need for awareness, I would say moreso than other movements. Now this may be largely because much of the movement is still run by nondisabled people, it is convienient for the people in charge to have us think awareness only, or perhaps the fact that we are taught to want to be “just like everyone else”. I think that that applies to parts of the gay rights movement as well, specifically the gay rights movement as it is avaliable to young people, through PFLAG and the like. In one of your posts on facebook, you discussed how a lot of people divide the queer community into “normal” gays and “freak” gays, and I was thinking about how assimilation ties into all of that; well, from what Crip Chick is saying, I think that the pressure to assimilate must be TEN TIMES worse for the disabled community.
Sigh. I get so scared sometimes that all the progress that oppressed people in America have made in the past 30 years could evaporate in exactally that amount of time. In the course of history, what’s 30 years? Who’s to say it won’t snap right back, given the right circumstances and global events?