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Dispreferred

The following post sums up very well what anti-disability rights views look like:

I find the parallel between the two situations [pro-life stances and stances against the operations on Ashley X and Katie Thorpe] significant in the similarity of the “pro-disabled” side with proponents of the pro-life philosophy: There is very little distinction drawn between those who are severely disabled — or UN-abled — and those who are only somewhat disabled and those who aren’t disabled at all; this is much like how the pro-lifers don’t discriminate between people who are actually born and alive, and those who are merely gestating.

It’s all the same to these people. The default position — if you’re pregnant, go on being pregnant; if you’re disabled, go on being disabled in the way nature intended you to be — is the ‘right’ position for these folks. To contemplate anything else is to ‘play God’, interfere with nature, trample on people’s rights, and so on.

Their moral stance is the same not because blastocysts and living humans are the same thing, but because when their prejudices are touched, they find the one right answer, and they want to impose that on others. They’re both pro-lifers, in that, the arbitrary value assigned to any kind of human life over any kind of non-human life, has taken over their minds and emotions absolutely — nothing else matters. The living human must be sacred, it must be preserved, it must be accorded rights.

I think, however, it is fundamentally wrong-headed to think that preferring ability over disability is discriminatory in a bad way. It’s also a mistake to talk about Ashley and Katie as ‘disabled people.’ They aren’t merely disabled — they’re barely alive, hardly conscious. The return on affection or care they make is less than that of the average pet. And yes, that matters. It’s why babies make it out of infancy alive. It’s why so many thinking adults want to be euthanized if they ever lose their higher brain functions.
There's more at the linked site, but I just want to call attention to some of the language being used here.

First of all, I think we need to be very careful when we say things like "not discriminatory in a bad way," particularly when you're not a member of the disadvantaged group being talked about.

First of all, not-bad discrimination has to be morally neutral. If I don't want non-tennis players coming to my tennis club, that's perfectly fine. The event has nothing to do with them, and also there is no systemic discrimination of non-tennis players. There is no history of exclusion. There is also no history of making decisions for non-tennis players, and particularly no history of deciding what to do with non-tennis players' bodies. More importantly still, there is no history of altering non-tennis players' bodies for reasons that are not medically indicated. There is no history of things being imposed on them for the convenience of those who make the decisions for them.

The case of Katie Thorpe is very different than the case of the non-tennis players. It's situated in social history in a relevant way. Even if, in the end, this actually is not the bad kind of discrimination, the burden of proof is on those who say it's not, and it's a massive burden indeed.

All this is not to say that a nondisabled person cannot be right about a disabled person's situation. I don't think it's impossible for the oppressed to overreact or to overreach in their conclusions. However, I do think that it's often a facet of privilege to think you know when discrimination against others is warranted and when it is not. Because of this facet of privilege, I think the burden of proof on a nondisabled person to prove that invasive medical procedures that are not medically indicated are discriminatory in a morally neutral way.

And I think the scare quotes around "pro-disabled" are very revealing here. What does this person know about the disability rights movement? Can she meet us on our own turf and answer our concerns? (So far, in conversations I've watched, I've not seen it.) If she can't, then dismissing us is calling us a foolish little special interest group.

And that's quite clearly not all we are. We were, historically, and are, today, a civil rights movement. The ADA was passed in the US due to our protesting to be recognized. To write us off as over-emotional Luddites is totally ridiculous and totally ignorant of history.

Furthermore, I find the "preferring ability over disability" language here discomfiting as well. How are we defining "ability" and "disability?" If we use a medical model of disability, the answer to that is easy: ability is what a body or mind that has developed in the usual way can do, and disability is something going wrong with that development or wrong with that body or mind later. The proper thing to do is to correct what we can and lament what we can't. If we use a social model, "disability" means what happens to a person when society does not accommodate people who differ from a statistical norm.

This model does indeed allow that there are also impairments, as well, that are not socially induced -- if I cannot move my leg, for example, I am in fact impaired in that way. I'm not disabled unless I also live in a world built for people who walk. If I live in a world built for people who roll, I may rarely notice that my leg doesn't move, just as I don't often notice that I can't bend my elbow backwards. The point is that the impairments, by themselves, are more or less disabling based on whether they matter, and whether they matter depends at least in part on whether the world is constructed in such a way that they do.

So I think what she's saying, clumsily, is something like: Look. Katie Thorpe is impaired, any way you slice it. And being impaired is not entirely neutral, if we're making value assessments. If a person had the option to move her leg, even if she usually rolls, she'd probably take it, simply because she'd be able to do more. Even if, as a member of disability culture, she'd much rather roll, thanks, she still can if her leg now moves. That ability vs impairment comparison seems clearly to indicate that not having the impairment is preferable.

And there's something to that point, of course. One professor I had stressed the fact that most people consider folic acid for pregnant women a good idea. If disability is purely social, and impairments should be judged neutrally, why would any pregnant woman take folic acid? If she does, is that eugenics on a far smaller, less precise scale? After all, she's taking it to lessen the likelihood of mental retardation in her child.

But I don't think the quoted post makes these points from a neutral perspective at all. I don't think this person is engaging with any kind of critique when she coins "un-abled." (And bear in mind that even if we uncritically accept that Katie Thorpe's "mental age" is eighteen months, a one and a half year old is hardly the same as what we think is going on with someone in a PVS. One and a half year olds are curious and engaged with their world.)

And it's this refusal to engage, more than anything, that makes the disability rights activists angry. Our movement can't matter because we don't see the obvious. Our history doesn't exist. And all of these assumptions, in the end, justify people's bodies being cut into for reasons that are not medically necessary.

That's what's so disturbing about all of this. Surgery that isn't medically necessary, surgery that only has an apparent benefit (in Katie's case, no one knows whether menstruation will cause her any distress, as she never has), or surgery clearly designed for the benefit of the caregivers (Ashley X's growth was stunted in large part to make her easier to carry; Katie's caregivers may be considering menstruation a messy new hassle they'd rather avoid), is somehow not only the right thing to do but the obvious right thing to do. If you don't see this as obvious, you're one of those "pro-disability" people who aren't making any sense.

Comments

( 16 comments — Leave a comment )
lilairen
Oct. 13th, 2007 10:56 pm (UTC)
Quickie note -- your link seems to be broken. (It appeared to point first to my friendspage and then to this reply window when I hovered on it, so it seems to be pointing at wherever one's reading from.)
fierceawakening
Oct. 13th, 2007 11:05 pm (UTC)
Fixed.
ravenmn
Oct. 13th, 2007 11:38 pm (UTC)
Trinity, this is really well argued. Thank you for taking the time to spell it out.

Later in the linked thread, I found this:

"I am nothing without my mind. Others who don’t match my mental capabilities, at least to some degree, are nothing to me, infants included. "

That's not just fucked up. That's very sad. To restrict one's life to nothing but intellectual equals? As if it is impossible to learn or grow from contact with anyone else? For someone who claims intelligence, that would be a phenomenally stupid and incredibly limiting way to experience life.

But, of course, it's not even remotely true. We all learn and grow from interactions with human beings of all abilities. Leave aside questions of ability, and just look at people who are stupid. We learn a lot from them as well, if only how not to behave in the world.

I have to wonder what benefit she gets by pretending she concerns herself only with people above or at her intelligence level.

belledame222
Oct. 14th, 2007 02:44 am (UTC)
i figured. smartest kid in the room syndrome. tiresome, that. especially past a certain age. y'know, given a choice between a brilliant psychopath and a "not smart" person with a lot of empathy, i'll take the latter.
fierceawakening
Oct. 14th, 2007 02:48 am (UTC)
yeah. and how do we ever know if we're the smartest in the room, really? I mean, okay, in the case that we're in the room with Ashley or Katie, assuming that yes, every possible method of communication HAS been tried, maybe we're the most cognitively capable in the room. But to extend that out and say "I don't want to be around anyone dumber than me," when your word choice indicates you think everyone is...

bleh
nightengalesknd
Oct. 13th, 2007 11:41 pm (UTC)
Forgive this half-baked thought - this is in response to Ashely and Katie and disability rights in general, something I've been thinking about lately as I delve into my research about physician attitudes about disability. . .

It seems to me that the biggest difference in the way I, and non-disabled people outside the disabilty community view disability (and I'm thinking mainly but not exclusively about medical people here), is this:

I see it as a neutral trait. They see it as a solely negative trait.
fierceawakening
Oct. 14th, 2007 12:59 am (UTC)
Yes.

There's a really amazing essay in the prenatal testing anthology I've got. In it, a woman blind from birth talks about having a child. She mentions that all her life both she and her parents treated her blindness as a neutral trait. But when it came time to have a child with her sighted partner, all these issues came to a head. She went to the doctor to find out the likelihood of her child being blind, and he said (I think) it wasn't likely, but then said "Why does this matter? Have a hundred blind babies if you want!" She went home, feeling great.

They had the baby, and her husband waved his hand over the baby's face at one point, and then excitedly exclaimed "She can see! Yay!" The mother was perplexed and sad and somewhat angry, wondering why it should be exciting or be some sort of relief that her daughter can see, and wondered what that meant her husband thought of her.

I feel similarly. Well... I don't know exactly what "neutral" means here, so maybe I don't exactly. I don't think my CP has never been an issue or a problem or an impediment. There are in fact times my body gets in the way of certain things, and sometimes I don't like that.

What I don't think, though, is that I got the short end of the stick in some life lotto. So my body doesn't do certain things as well as others? As Belle puts it, someone play "Melancholy Baby"... ;)

I do have a lot of chilling, harrowing memories of abusive caregiver types, and I don't like that. And I do have chilling memories of orthopedic surgeries going wrong, which made my life hell for a while. I have PTSD.

But all of that is not about the CP -- it's about the world I live in, and the abuse that's sanctioned because it's supposed to be care, and about stupid asshole orthopedists who don't know what they're doing and don't care for their patients and coast on past success with "scary" cases.
nightengalesknd
Oct. 14th, 2007 03:22 am (UTC)
Sure my CP gets in the way of stuff. It's affected my career options. It's affected my ability to persue certain hobbies. Those are real affects, not social constructs. I mean, I can't be a neurologist. I can't dance like I used to. Or climb stairs. I miss climbing stairs, and it is inconvenient to be hunting up the elevator when everyone else at work is trooping up or down.

It's affected my social and professional relationships in ways that are definitely social constructs. I mean my entire medical school experience was shrouded in the clash between my disability and the establishment.

I guess what I mean about it being a neutral trait, though, is that it doesn't make me any worse of a person than a person without a disability. (It doesn't make me any extra inspriational, heroic or special, either, mind you.) It doesn't give my life any less value. It doesn't make me in some way inferior to a person who is non-disabled, even though my muscle strength, say, or balance or pancreas function ARE inferior to the population norms.

I see it in the same way I see my other "diversity" characteristics. I'm female, asexual, Jewish/athiest, geeky. In my book, none of those things are worse than being male, gay or straight, Christian, mainstream. Or better. They are just what is. They are neutral traits. (And BOY have some of them given me social and professional difficulties at times!)

I had a whole conversation last week with a neonatologist. Of course, one of her goals in life is to prevent babies from turning into people like me, although she doesn't quite think of it that way. I said that I especially enjoy taking care of children who have developmental disabilities to children without, given the choice. She said that I like pathology. I answered that it wasn't that, really, but that I don't place any particular value on "normalcy" I think that goes part and parcel with viewing disability as neutral rather than tragic. Something I need to blog about myself at some point, I suppose.
fierceawakening
Oct. 14th, 2007 02:41 pm (UTC)
*nodding vigorously* Yes, that's what I thought you meant by "neutral trait" and in that case I totally agree. I've just noticed that people get ridiculously tripped up by the word "neutral," thinking that it must mean I'm saying I've never had anything bad result from having CP. People don't really understand that, well, bad things result from all kinds of characteristics we're not generally frightened of.
(Deleted comment)
fierceawakening
Oct. 14th, 2007 02:38 pm (UTC)
The majority of violence in the world is caused by healthy, physically capable, able-bodied people. Period. But we aren't talking about thinning the able-bodied population, due to the ability to wreak havoc, now are we?

Exactly!

But if anything makes it crystal clear that able-bodied people are indeed in charge, with power over the class of disabled people, it's exclusive discussions regarding who is physically good enough to be born, and who isn't.

Yes. Which is why the endless "you're a pro-lifer" stuff bothers me so damn much. The larger abortion issue isn't about who deserves to be born, about wanting a child and then pruning and picking. It's about whether a woman has any right or say in what goes on in her uterus, and whether the state has any right or say in it.

That's NOT THE SAME as the essay in the prenatal testing anthology I already mentioned in which a woman says "I'd abort a fetus with disabilities because the body is a house for the soul, and I'd want my child's soul to have a better container," as if souls float around and then get stuck in "bad" bodies if we aren't ever vigilant about it.
(Deleted comment)
fierceawakening
Oct. 14th, 2007 02:43 pm (UTC)
I'm not so much engaging with THEM in this post (I haven't bothered to comment at Apostate's for example) as I am quoting her and explaining in the hopes that people who are wavering will read this and see why it is that people like you and me answer these sorts of things with mocking sieg hiels...
thegimpparade
Oct. 15th, 2007 10:50 pm (UTC)
This kind of crap is so exhausting to read, nevermind comment on, dispel the ignorance disguised as "truth", and fight the good fight for over and OVER again. I can't even finish your post. There is no sane response to being subjected to ideas like this over and over again.

But I'll come back and try again, Trin. Thanks for writing about this. We need some sort of tag-team thing to just keep up with this shit.
fierceawakening
Oct. 15th, 2007 11:29 pm (UTC)
WE need a task force.
shidoikarji26
May. 5th, 2008 02:26 am (UTC)
Interesting. Condsidering I posted things on self-advocay awhile back. These issuses need to be put in the forefront.,
( 16 comments — Leave a comment )

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