"I have a friend with a disability who ..."
These few words begin a conversation that goes one of two ways. One, is a simply about a person, a person's experience or what the relationship between teller and subject learned together. The other is the dreaded "he hates being disabled, so disability is a bad thing, so everything you've said about disability pride and disability identity is wrong. So there!"
I had the "you're wrong" conversation the other day and in it I had to listen to a story about a hugely bitter person who is hugely angry at his disability, who attributes all that is wrong in his life to his disability. I have no trouble believing that the person talking to me was telling the truth. I have no trouble believing that the person in the story is simply the person in the story.
I responded with a true story about a woman I knew who was very pretty but felt that her relationships all failed because she had crooked teeth. I pointed out that her logic didn't make sense. She managed to get into relationships easily but that they never lasted. Maybe she should think about what happens after attraction not before. She stated, firmly, that the problem was she got a lower class of men because they were men who were attract to a woman with crooked teeth. I know, right now, you are thinking I've made this up. I haven't. And, in fact I've run into varients of this theme across my lifetime. Anyways, she got her teeth fixed. Next time I saw her, she was convinced that the problem was that she had toes that slightly pointed in. Seriously.
People always seem to want to attribute responsibility to a 'thing' or a 'circumstance' and not go any deeper. I know that disability brings with it a lot of difficulties, barriers and frustration. But I think it is important to not attribute to disability what doesn't belong to disability. In the same way that one becomes racist by attributing to race what doesn't belong to race. Or one becomes homophobic by attributing to sexuality what does't belong to sexuality. Or one becomes sexist by attributing to gender what doesn't belong to gender. In the exact same way, one becomes disphobic by attributing to disability what doesn't belong to disability. False attribution, to me, is always the beginning of a social evil.
I know gay people who don't like being gay. That doesn't make 'gay pride' wrong.
I know women who feel that women are inferior to men. That doesn't make 'Girl Power' senseless.
Individuals will always be, resolutely, individuals. But I think the conversations that I have with non-disabled peopel who want to negate the ideas of 'pride' and 'identity' as they relate to disability aren't really about their friend's, even though I believe the friend to be real not a conversational contrivance, experience. I think that these ideas, these concepts are so foreign to how people think about disability that minds snap to someone or to some situation that will negate the idea and return a world view to the 'status quo.' Disability is tragic and that's that.
What's interesting, though, is that these conversations are happening at all. That people are beginning to intellectually wrestle with a new way of seeing disability. I wonder if the very first feminist who had a discussion which began "I know a woman who just loves submitting to her husband," walked away thinking "HooRah!!" The topic has be raised. Or if the very first gay activist who had a chat which began, "I know a lesbian woman who is in therapty to change," walked away thiking "ALL Right, now we begin."
Eventually, I believe that we will begin to attribute to individuals what belongs to individual's, and leave it at that. Yep, there are going to be miserable unhappy people who attribute to an aspect of themselves what doesn't belong there. It's easier than doing self examination. It's easier than personal growth.
But in the meantime, I welcome the "I have a friend with a disability who ..." discussions, primarily because they are discussions and that means, that oh Lordy, Lordy, the conversation has begun.
Hmm. Interesting point: when people bother to counter a view, it means they're starting to take it seriously. True, I think! (The opposite is certainly true. Nothing more infuriating than being entirely ignored, or metaphorically patted on the head.)
One of the things I notice over and over again is that people imagine disability in terms of the first shock of *becoming* disabled, and expect that that is the lasting experience. They don't, generally, imagine divorce only in terms of the first shock.
Equally, it seems reasonable that there should be people who attribute misery to disability because their particular disability makes them miserable. Merely being in a wheelchair and miserable might need unpicking, in good social model fashion, as might the wretchedness of often not being seen as a citizen, or a person at all.
People do adjust significantly to almost any condition of life, given time, and some do so so excellently as to be a model for lesser souls to aspire to; but frankly, a lack of energy or the perpetual presence of pain can be real dampeners on a life. There seem to be limits to building ramps for exhaustion.
I don't think that at all negates your general argument; perhaps tempers it a little.
(Random thought arising: the medicalised discourse around depression seems to boil down to an idea that a depressed person's misery can never be rational. How bizarrely opposite are the ways society regards psychiatric and 'physical' disabilities.)
Profound and thought provoking, thank you Dave. As always, I thoroughly enjoyed your post. :)
What I notice about those conversations, is they rarely go the other way around.
It's always "I know someone who fits the expectations I already had about disability, so you're wrong in trying to change those expectations."
What gets really messed up is when it becomes "Bob is more miserable than Alice, therefore Bob is more severely disabled than Alice."
No. No. No. Not even if you look at severity in the (medicalistic) way most people do, and don't question that at all. Most people I've known who are utterly miserable about being disabled, would be considered less severely disabled than I'd be considered (under standard views of severity, which I don't go by, so just assume I'm making this disclaimer in the rest of this discussion).
Yet they'll swear up and down that they have way more difficulty doing various things than I do, not because they know how difficult I find any given thing, but because they just assume that the more difficulty you have with something, the more miserable you get.
Sometimes it seems like they feel like they have to believe this, because if they didn't... then they might find that it's not actually being disabled that's causing their misery, and that would be really scary to not know what really is. I get this sense of desperation off of them when these conversations happen, and I really wonder if that's what causes it.
As for not being able to "ramp" exhaustion... I get what you mean, but I'm not sure it's that simple. (I'm not sure if you think it's that simple either, so these are just my thoughts on the matter.)
People seem to find it easier to imagine things like building ramps -- something straightforward and easy -- than they find it to imagine building a society that is truly and completely okay for disabled people.
Right now, we have a society where many of the problems commonly faced by nondisabled people are very accommodated for. People see these problems as universal, as part of the human condition. Not always a fun part, but part of it. And society has all these different ways built in to help people cope with these problems to the best of their ability. (And by "society" I mean just about any society has this, although which problems are accommoated for like this varies depending on the society.)
Imagine a society where any possible level of exhaustion is completely and utterly planned for in a way where people don't stand out in a negative way just because they have the more severe forms of exhaustion. Where people do not grow up with the expectation that they will have a certain amount of energy. Where people therefore don't have the expectation that many people here do, that certain goals for themselves have to happen or else... they won't be happy, they won't be okay, they won't be able to feed their kids, etc. Where people acknowledge that the goals we have for ourselves are often dictated by the society around us, we don't just come up with them in a vacuum and become inevitably miserable if we can't do them.
Where other people completely step up their support for you if you can't (do the dishes/take a walk/walk across the room/turn over in bed/move your arms/move your eyes/listen to things/breathe on your own) without having to rest for hours or days. So there is no pressure -- from inside or out -- to do more than you can do at that point in time. (With understanding that much pressure "from inside" is heavily affected by pressure from the outside, even if we can't see the route it took to get there.)
Then yes, severe exhaustion will still feel unpleasant, but it won't necessarily cause the abject misery people currently expect it to. Because a lot of that misery is due to culturally-learned expectations and lack of support, and people really don't get exactly how much of it is that.
I've been through exhaustion severe enough to affect breathing, where all I could do was lie in one place doing nothing for long periods of time. At a time when I was quite the workaholic. And I wasn't thrilled with the situation but I wasn't miserable either. In fact there were experiences I had because of this - good ones - that I could not have had if I were moving around all the time. Self-pity would have made those experiences impossible for me to notice.
It's really easy to think that changing society won't affect how bad something feels, when you haven't ever lived in a society that does that thing better than the one you're living in. There are certainly things that won't totally be changed by changes in the society, but I can't think of anything that can't be changed substantially for the better, especially with a little more creativity than ramps take.
I love it when you make me think. Great points expressed in this post.
Dave, when you wrote "But I don't think it is important to not attribute to disability what doesn't belong to disability" did you have too many negatives? I think I get what you mean, but that sentence is really confusing me.
I agree that giving disability (or any attribute) more credit than it deserves for whatever misery is a bad move and part of (or a potential cause of) ableism/disableism.
I can also see how it's a good thing to have these discussions. By bring it up, the people with these stories are admitting it's worth talking about. This is a lot better than those negative views being so presumed true that they're not even worth mentioning. And whenever one says, the floor is open for teaching them different. I had a similar talk with my mother last night about disability and safety and accomodating my space for my needs being a point of pride rather than shame or sadness.
Baba Yaga: Yes! When people imagine disability, they imagine the first shock, not life after that. I love the contrast of how people think of divorce.
Many of my (acquired) cognitive disabilities, people can't imagine. I can understand that, but I wish most wouldn't say they'd rather be dead even if that meant suicide. There's no discussion with me that people with disabilities are or should be bitter, as far as I can tell, because the people that would say that don't think I should miserable but rather that I shouldn't be alive. Lovely. I'd much rather hear that kind of "I have a friend with a disability who..."
Yikes, Beth, thanks for pointing that error out. My normal process for writing a blog involves me writing furiously, editting slowly and then reading it aloud to Joe. It's in the reading aloud that I catch most errors. This one, I wrote quickly, went over it once or twice and then published. It was early in the morning so Joe wasn't there to be read to. With your assistance I have fixed that sentence, which I agree was very confusing, it now reads: But I think it is important to not attribute to disability what doesn't belong to disability.
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