In discussions about quality of life or eugenics or disability pride, some nondisabled person often asserts that it’s obvious — despite all moral arguments on the value of disabled persons lives — that a body with impairments is just physically less desirable and not something any sane person would choose. Lacking something can’t possibly be better than having it, right? It’s an argument that always fascinates me.
It fascinates me because it seems like a very specific aspect of physicality to decide unequivocably that there is one obvious answer for when we recognize such biologically-based statements about sex or even body weight are problematic. Being one sex or the other means that each of us physically has some abilities and some lack of abilities that those of the other sex don’t. The ability to bear children versus absolute freedom from the “burden” of bearing children — we recognize the political and subjective aspects of those perspectives.
Of course a body that can do more tricks is physically superior, better, handier to have. And for past generations and people in different locations then and now, a tricksier body has been advantageous to survival. I don’t disagree with that, so far as it goes.
But often the added implication is that there can’t possibly be anything good about a body with impairments, and that isn’t necessarily true. I understand that this is hard for many people to accept. Maybe it helps if I accede that much of what I appreciate about my specific body and it’s abilities/inabilities is related to the technology that I use.
Individual physical experience is important, so my assertions of enjoyment are limited to my own experiences, which I’ll describe in a minute. But I’m not the only one. Wheelchair Dancer notes that her joy of dancing is inextricably linked to how she can make her manual wheelchair move and express what she’s feeling. And she’s certain this cannot be simply and completely mimicked by a nondisabled dancer using a wheelchair:
You can get a sense of how long it takes to turn in a chair, what it feels like to PUSH a chair, how to stroke, wheelie, etc. But you don’t know what it means to actually live in a chair and feel it melded to you as an extension of your body or, especially, what it means to actively use the chair instead of feeling it as a prop. And this means you won’t be able to move in it as we do. You won’t feel comfortable in it in the same way that we do; you don’t even see the texture and surfacing of the floor the same way. Our relationships to the space are different.
I’d argue that while a nondisabled body can eventually learn the dance moves so that they look the same as when a disabled wheelchair user does them, there is a psychological aspect to exercising the limits of your body’s abilities — regardless of what those limits are — that adds emotionally to the experience. I also believe a quadriplegic can be an athlete if she is pushing the physical limits of her body and experiencing all that goes with that. If individual experience is given value, it doesn’t matter with what body it’s achieved.
Here’s a Spanish ad with some dancing to consider. And Aaron Fotheringham’s athleticism seem obvious to me here, where his moves are similar to those of skateboarders and bikers. New Disability’s interview with Aaron reveals that he’s used a wheelchair virtually his whole life, explaining why he makes it look effortless — it’s a natural way of moving for him (not the flipping, but using a manual chair, generally).
As I said, technology contributes to all this. Even power wheelchairs provide unique joys. When I was in college as an undergraduate, my friends and I used to play around in our wheelchairs when the campus was quiet at night. I liked to drive my scooter in tighter and tighter circles until it tilted onto only two wheels. The challenge and thrill was to pull out of the circle just in time before tipping over. Also, many of the same joys people get from driving their cars can be found driving an electric chair. There’s skill to it, enjoyment of speed and mastery of a machine.
On a less athletic level, I used to have a large power chair with a tilt-in-space feature on the chair. It was a special pleasure to park anywhere on the campus quad and recline back, eyes closed to enjoy the morning sun. My portable Barkalounger and the social dispensation to do something strange like park and nap wherever I wanted were a perverse pleasure to me.
Surprisingly, I find moments of enjoyment in my ventilator and feeding tube now that I have both of them. If I exert myself doing something and get short of breath, I can simply lean back in my chair and wait until the ventilator helps me catch my breath. It’s not resting in the same way a nondisabled person does after he’s been working out. You might say it’s lazier than that, an anti-athletic recovery that doesn’t require me to do anything.
Likewise, at night, when my PEG tube is hooked up to a slow drip of liquid nutrition, there’s a physical comfort to knowing my body is getting protein while I sleep. I could get the tube pulled if I wished, now. It’s not absolutely required for my sustenance at this time. But it’s a comforting back-up, that, along with a low cholestoral count and no concern about my gaining too much weight means that I’m curiously free of all concerns about my diet that most other women struggle with daily.
It’d be easy for a nondisabled person to say these little joys I mention are really sour grapes about what my life is missing. Or that I’ve stirred up a bit too much lemonade from my supply of lemons. Fruit metaphors aside, I inherited my optimism and always find that here and there life is sweet. But the point is, there are aspects of this specific, highly-flawed body that are uniquely enjoyable, and I’m not the only disabled person to make that claim.
Crossposted at The Gimp Parade
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“…a body with impairments is just physically less desirable and not something any sane person would choose. ”
I’d go with this, having experienced both, and of course, living with the latter, for over 20 years now–yes, *not something any person would choose*. That one goes on to make the best of disability is no any argument against the truth of the above statment. As disabilities go, mine is minor, but has affected my life in devastating ways I would never choose, and had affected my family too. But I know I’m not telling you anything you don’t know and haven’t experienced.
And although they do not strictly fit your “physical” disability, I would mention the body with mental impariments. The brain/ mind is part of the body, no, and impariments there can affect the physical body. I seriously doubt we can find a person with schizophrenia who will agree with the quoted statement.
I’m so happy to see you blogging.
This is the money quote for me:
It’s that implication that is so pernicious and tough to work with… and this coming from someone who has some impairments that truly do not matter a damn, and others that affect me enough that I wish to Deity they’d take a long vacation…but even the ones I *hate* are inconvieniences…rather than reasons that an objective observer should ever decide not to value my specific existence. with all of its increasing limits.
But isn’t the whole premise of that “Not something any person would choose” flawed? We don’t GET to choose, no matter how much planning and testing we do, bodies are mortal, things break, and a natural diversity will be expressed in the shapes and functions of bones, muscles, and brains. That’s just life. Eugenic policies have killed or damaged millions, destroyed families and cultures, and still never won any higher “perfection of the race.” Instead of chasing that ridiculous dream, energy can better be put into making a world that respects and expects how many interesting ways human bodies and minds can work.
More: On the joys, Harriet McBryde Johnson has this passage in the final chapter of _Too Late to Die Young_ (2005):
“But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about pleasures that may seem a bit odd. Let me give some examples. John Hockenberry rolls across the Brooklyn Bridge self-propelled in a manual wheelchair. As he describes it, it’s a high no one but a hotshot para can really know. A nation within a nation, of Deaf people, capitalizes its name to demand recognition as a language group, equal to any other in dignity and ferocious beauty….After decades of torment, Professor John Nash recognizes his delusions for what they are and lets voices and visions and mathematical creativity cohabit in a mind unlike any the world has ever known….”
And soon after that passage, this: “Throughout my life, the nondisabled world has told me my pleasures must only be mental, never physical. Thinking to help me, it has said my body is unimportant. I respectfully disagree. For me, the body–imperfect, impermanent, falling apart–is all there is. Through the body that needs the help of hands and machines to move, that is wired to sense and perceive, comes all pleasure, all life. My brain is only one among many body parts, all of which work through one another and cooperate as best they can.”
I think there is some merit to the premise, but one has to dig it out: it is all too often used to justify performing medical procedures on disabled people that are not really in their best interest. And even if the procedure does not make the recipient just as abled as the norm, the argument will inevitably run that because anybody would choose to be abled rather than to be disabled, anybody would choose to be more similar to abled people than to disabled people.
The case I’m (only vaguely) familiar with is cochlear implants, which many deaf people criticize, IIRC on grounds that it’s a serious medical procedure that does not turn a deaf child into a fully hearing child, and is used to justify mainstreaming the child into a school where they’re worse off than among other deaf kids.
I know many schizophrenics, both functional and dysfunctional. Some of them live on the streets…but many of those people like the flights of fancy on which their brains send them, and at least one woman I know really enjoyed having the “company” of her voices and avoided her medications so that she wouldn’t lose that. One of the most functional schizophrenics I know has been living on the streets for years. She has close friendships, she gets a shower and laundry done regularly through homeless services, she has places to go when it’s too hot or too cold, and she is held in high esteem by the large homeless population in the city, as well as by many of the people she knew before the illness struck her. She spends much of her days and nights working on her research, and feels very fulfilled by it.
I really like this point. I remember when I first read about the difference between impairment and disability, and what a revelation that was.
My friend has severe arthritis, and there is no relationship between the food she eats, and the amount of fat her body accumulates – she also has the most psychologically healthy attitude I know. I find this upsetting and depressing more than I can articulate. I’m not begrudging you your freedom – but mourning its rareness.
I have to admit I do find it hard to apply the impairment/disability distinction to pain impairments. Then it seems that it can be that the impairment is disabling, no matter what the environment (obviously where pain is stress induced, or exacerbated by the environment it is about the intersection of the environment the person with the impairment lives in and the impairment, but is also pain that just is). I’m thinking of a woman I know whose back pain keeps her from sleeping, concentrating, or sitting too long.
I know more than a few schizophrenics too, and had a dad who was bipolar, a sister who was (briefly) psychotic — there’s no doubt that society contributes to their misery by expecting too much in the way of normality and withdrawing too much in the way of support unless a person is willing to accept exactly what is offered in the way of treatment, with all of its horrible side effects. But I have to say that the schizophrenics and other seriously mentally ill people I know prefer a state that is closer to normal. And what makes a mentally ill person feel good often creates misery and terror in their families, and not because their families are expecting too much. Being mentally ill isn’t only about one’s interior status, it’s about how one interacts with other people. You try being the child of a seriously mentally ill person who has legal control of your life.
I agree that *some* people with schizophrenia and *some* people with mania would not choose to give up their disorders if they could do so. People with mania love the energy. Some people with schizophrenia have hallucinations or delusions that are pleasing instead of frightening. However, I have never met one single person with severe depression who would choose to remain depressed. (I’ve worked in mental health for 17 years now).
bean, I agree that generalizations about mentally ill people are usually or at least often off the mark. But so are generalizations about normal people and their “unreasonable expectations” vis a vis their mentally ill parents.
There is, especially, this belief that “mania” gives rise to euphoric productivity, in the manner of Robert Schumann. For more ordinary folk, it is just as likely to give rise angry destructiveness. Also, mental illness often takes over, alienates and prevents people from being reasonable — as in, being able to weigh choices or even other people in the light of reality, and by that I mean, the illness places a template of understanding on top of whatever objective facts might actually exist, typified, for instance, by someone who sees a conspiracy in everything, or who believes that wearing certain colors is a certain sign of specific messages that someone is trying to impart.
Mental illness is very hard because it is mostly manifest in the perception of others, while to the ill person it is simply a reflection of reality. Being dependent on the illusions and energy associated with your illness is all too real of a phenomenon. Is it good? Perhaps, for some people, it is, just as, I believe, not all use of illicit drugts is inevitably destructive. But considering the obstacles to treatment and other services faced by the mentally ill, I don’t think we are doing anyone favors by romanticizing mental illness.
I have never met one single person with severe depression who would choose to remain depressed.
I guess it’s time to introduce myself, then.
Yes, the depression turns my life upside-down (although how much of that is, like bean said, caused by other people’s expectations I’m not so sure), and yes, I’m hoping and praying the current course of medication will put me into a kind of remission and keep the worse symptoms at bay, but I’m pretty sure I will never be just like an un-depressed person. And that’s a good thing, because I don’t want to be. I want to stay as my own self, and the depression is part of that. When I catch myself thinking it would be better if the depression could be surgically removed from my personality, I recognise that I’m getting too frighteningly close to wishing myself dead.
This argument really takes on meaning when it gets applied to testing pre-birth and the resulting changes in proportion of some disabilities. The question seems most relevant when talking about people who aren’t born yet, i think. It would be offensive to imply that adults are unable to judge their own existence. Perhaps none of us are (but how would we know?) Maybe we’d all be happier as and will never know it.
On the other hand, we can have the argument in the abstract (thus reducing, though not eliminating, personal offense) when talking about testing prebirth. It is offensive to say to someone “you would be happier if you were different” but it is less so to say “you are happy, but the majority of people who are like you are less happy.”
Perhaps this discussion needs some new language? DRAs tend to use “eugenics” when discussing testing which reduces disabilities in the population they support (trisomy 13 testing comes to mind). But fewer people use the word “eugenics” when discussing genetic testing for cancer, or Tay-Sachs, or Parkinsons.
I am a schizophrenic stabilized on the second generation antipsychotic drug
Zyprexa. I had two years of medical school before my illness got out of control
and have kept up in the field since that time. First, what Barbara says is
true. It is not just the schizophrenic or manic-depressive himself and whether
he wants treatment. It is also how his behavior affects other people (the mental
illnesses are behavioral disorders), especially his family. Also, as far as the
side effects of drugs are concerned, the new second generation antipsychotics
(SGA’s) are far more effective with far fewer side effects (mainly weight gain).
The main problem is that the SGA’s cost an arm and a leg.
I have ADD, inatentive type. ADD has been called by at least on expert I heard a “fun disorder”: There is a limited control over the executive functions of the brain, and so you tend to follow impulses more than what you know you should do, or sometimes just do not do anything instead of what you should. So there are aspects of it that can be enjoyed. I would much rather have ADD than depression, for example, because when I’m not getting work done, I am plotting the abolition of poverty or calculating the probability of extra-terrestrial life instead of ruminating on what a failure I’ve been. And there are things I can use to my advantage. I am excellent at pretending not to notice stuff because I so often actually do not notice obvious things.
Still, it is hard for me to imagine someone prefering to have this illness than not having it. A lack of control over my executive functions means that I not only have trouble doing what I *should* do, it also means that I have trouble doing things I *want* to do. The drugs do not CHANGE my personality, they allow me to EXPRESS my personality.
Blue and bean are suggesting that it is presumptuous to assume that disabled people want to live lives without their disabilities. They are probably right for the vast majority of disabilities. But how could a person logically want to have a disability that, BY DEFINITION, prevents you from living the life you want to live?
Ampersand. Is this remark aimed at me. I had stated I would shut up if it
were desired of me. I had simply wanted to blog and part of the blog is talking
about my disability since we are talking about disabilities.
William, I’m not sure which remark you mean. No remark on this thread is aimed at you, as far as I know.
An impaired body is so much less desirable. I have neither a tail nor retractable claws, and clearly any sane person would prefer to not have these horrific disabilities. My cats feel such great pity for me. Likewise, I can hardly see anything in the dark. What use is continuing life in this miserable, worthless, body?
My husband is very fond of the glasses he has worn for astigmatism, lo, these many years; they tend to keep splinters and such out of his eyes. Wound anyone think him strange for that?
I wonder if we really have a choice. We’re going to age (or are aging,) and with aging come changes to our bodies, limits, difference.
I know someone who lived so healthily that they literally consciously demanded of themselves that they never face age, chronic ilness or disability.
They ate extremely healthily, stopped smoking when they were quite young, rarely drank, didn’t do drugs, and constantly involved themselves in the correct amount of excersise.
They now have aging, chronic pain, emotional distress, and at least four specific physical impairments not automatic to aging.
It happens.
I don’t believe we have a choice to definitively “rule impairment out” no matter how we live.
Since I’m mainly using individual subjective experiences to make my point, I’m hesitant to make any statement about impairments I haven’t experienced, though I think my logic, such as it is, could be applied to any impairment, physical or otherwise.
The Cochlear implant issue is an excellent example though, where Deaf people have made the same basic argument I am making here.
Sailorman, my approach with this particular post is meant to avoid having this discussion in the abstract. At least right here. Not to squelch what you want to say, but so often this is dragged into the abstract and suddenly we are theorizing again about who is a person and which impairments it’s best to abort when found in fetuses. All of that is important to think about, but usually individual experiences of disabled folks get dismissed when we go there.
I think Sailorman’s suggestion is off the mark. It’s not just an issue of whether someone should have been born, that seriously ignores how perceptions of disability affect the lives of disabled people on a day to day basis, quite apart from whether they could have been avoided through pre-birth intervention. If you perceive a disabled person as being literally unable to obtain enjoyment out of life, you might wonder why anyone should bother trying, for instance, through accommodations in employment, education, and so forth.
As for cochlear implants, I think this is a perfect example of of showing how we draw a line between an illness state that should be treated and disability as a static condition that cannot and perhaps should not be changed. Cochlear implants are a treatment for what is usually viewed as a static condition. I know that many see this as devaluing the experience of deaf people, but it appears that more and more parents of hearing impaired infants are opting for cochlear implants.
blue: I understand, i think. But let me ask a question in response: When you say you want to “avoid having this discussion in the abstract” does that mean that it would be appropriate to challenge your personal feelings as someone who experiences your disability? i would not ordinarily do that. I mean, that seems like it could go downhill fairly rapidly.
But if you want a real, fair, discussion, I think you need to accept that some of the things people say (on both sides) may be impolite. Not intentionally rude–merely impolite by necessity, as “good manners” don’t let you talk openly about these things.
Even so I think disability (like, say, race) is a tricky subject to discuss among well-meaning liberal types who don’t especially like offending others. That’s why I think abstract discussions are often more honest. In other words, maybe you’re not being “marginalized” to the extent you think in these abstract discussions. Maybe you are simply unable to use the benefits which you would ordinarily get from politeness.
But I will defer to your request in this thread and avoid abstractions from now on.
So. Back on topic.
I do not think you are writing about “sour grapes”. And I certainly acknowledge that disabilities can focus one’s senses and/or awareness on things which are both extremely wonderful and often disregarded by those who do not have the disability.
However, I stick somewhat on the “disability as ability” claim.
And if I look at things from an empirical standpoint, it seems there are really only two groups who KNOW both sides of the coin: Able folks who have become disabled (“A>D”), and disabled folks who have become able (“D< a >D people, both in random life and in the times I worked in hospitals. I don’t think there’s a single one I can recall who wouldn’t trade back. Many, for that matter, would give a significant sum (or body part) to “go back to how it was.”
Did they learn to accept it? Sure, in most (not all) cases. I’ve met people in a wheelchair who had been there for most of their natural lives. They didn’t hate life. But they sure would have liked the use of their legs back. I went to school with a blind student who used to be able to see; he was quite bitter about it.
Of COURSE many A>D folks lead very happy lives, which is great. I don’t see the question as “are all disabled people miserable?” That’s a straw man. And of course not: Many abled folks are miserable, and many disabled folks are happy. Everyone is as happy as possible, to the best of their ability: We’re all people. But I see it as a relative issue: Would that person, in general, be happiER without their disability? Certainly for the A>D folks the answer seems to be “yes.”
I have not met many D>A folks. To be honest, I’m not exactly sure who would be in this group. i don’t know that I’d include cochlear implant kids or not; I don’t know enough about them. Perhaps the best bet may be people who have eye surgery. Glaucoma (I think?) can be reversed; I recall reading an article on surgeries which would, essentially “restore” sight to those who have lost it. Nobody was unhappy; most were ecstatic. Can you think of who (if anyone) would be in that category?
Your point seems to be that abled folks cannot judge the lives of disabled folks because we’re not disabled. OK, then: You can’t judge the lives of abled folks, either, because you’re not abled. Only one group can really judge both, and it’s pretty clear what their vote is.
Isn’t there some selection bias there? People who go from TAB to disabled have different–if overlapping–injuries than people who live all their lives with disabilities. People aren’t born with schizophrenia; people don’t develop spina bifida. Disabled people may well be pressured to identify in different ways, and might develop different relationships with their disabilities, based on the nature and progression of their condition.
A disability studies perspective would say that, if someone is “happier” with the use of their legs than without, it’s because we’ve made a world where walkers’ lives are *easier,* and *cheaper* and *freer*–it’s the social and built environment that makes lives harder and more expensive and more limited, not the impairment itself.
You forgot one large category, Sailorman–there are people with disabilities that are intermittent–some people with MS, for example, experiences periods of more and less impairment, and varying impairments.
Finally, there are many, many people with acquired disabilities who assert that they would not “trade back” (as if anyone is making that offer). Here’s a discussion thread that includes a variety of answers to the “would you take a pill” question:
http://www.washington.edu/doit/Newsletters/Aug04/10.html
Some excerpts that say “No”:
“I’d take it as long as it wasn’t retroactive. I’ve had so many good things happen in my life because of my disability, I would never change the past.”
“What might I miss out on if I was no longer disabled?”
“No, I wouldn’t take the pill under any circumstances. I don’t like the idea of somebody deciding we all should be a certain way and then creating a pill to make us that way.”
“While it may make me ‘fit in’ better, not fitting in has been one of the main things that has enabled me to have different and original views on things.”
“I would not take the pill…I love having my disability…I can do so many things able-bodied people have never dreamed of doing. Do you know how great of a feeling that is?”
“I have no desire to be ‘fixed.'”
If a magical fairy could come along and make me strong, beautiful, healthy and brilliant, I’d remember my fairy tales which always told me that blessings come with curses, and that sometimes the curses are worse than the blessings are good.
We don’t have magical fairies. What we do have are doctors who can cut us open and implant prosthetic devices that only approximate what the original part was supposed to do or give us medications that can fix one problem while causing others. Sailorman, probably you had read about cataract patients. Indeed, they are happy to have their cataracts removed. But people who keep developing cataracts eventually find that being blind is better than an increasingly dubious surgery–you can’t just keep cutting on human bodies like you would a rose bush.
I don’t doubt that disability can have its joys, and I also don’t doubt that many disabled folks wouldn’t trade the experiences they’ve had while disabled, but I don’t see how that means we can’t say that disabilities are indeed disabilities on some not-completely-subjective level. Every phenomenon no doubt has its joys for some people. I’m sure there are some cancer patients who wouldn’t trade the experiences they’ve had because of their illness, but I also wouldn’t hesitate to call cancer an illness or to support research that would provide a cure for this illness.
On a more general note, if we’re afraid to label some conditions as being, on the whole, bad (even if some people with the condition accept it or even rejoice in it) then we sacrifice a lot of ground in the struggle for a more just society. To give an example: if disabilities aren’t really disabilities, then what reason do we have to seek justice and compensation for those who have been disabled because of toxic waste dumps or other environmental pollution, or because of workplace accidents? Or, for a different but related example, take poverty. I have plenty of friends who are poor (not because they’ve taken vows of poverty, just because they ended up that way) and would not take steps to change that if they could; I know even more people who are not rich (while also not being poor) and would not become rich if they could. They don’t consider themselves disadvantaged because of their financial situations, and I respect and do not contest their assessment of their own situations, but this doesn’t stop me from considering poverty in general to be a disadvantage.
Sailorman said: In other words, maybe you’re not being “marginalized” to the extent you think in these abstract discussions. Maybe you are simply unable to use the benefits which you would ordinarily get from politeness.
I’m too tired tonight to give a full response to your comments, but to the snippet above, I’ll refer you to an example of the way moving into the abstract often goes — follow the general trend of the comments. And this was my reaction to that then. IMO, this problem is similar to why there’s always on-going discussion about whether men can be claim to be “feminists.”
Apologies for the brief reply(and the long posts at those links). I’ll clarify if needed when I can.
Hmm, so what kind of “bad” label do other groups need to carry in order to claim justice? People with disabilities don’t demand civil or human rights on the basis of pity–it can’t be “They suffer so much, their lives are so terrible, let’s toss them some parking spaces.” Rather, “Public spaces need to be accessible, because ‘the public’ includes disabled people.” See the difference?
blue,
thanks for the links. I read both of them completely but didn’t have time to follow the included link trees. In the context of those links, I can see why you might shy from the abstract. (Though as I hope you understood from my response above, I steered towards the abstract NOT because I think you are equivalent to, um, a fetus (WTF?) but merely for the sake of politeness.)
Piny & Penny: I don’t think there’s selection bias, as the spectrum of A-D folks is drawn from all walks of life, ages, and personality types.
I do agree that people dislike sudden no-choice change in their life, so I think there is bias in that respect. Which is to say: Even if I would be just as happy disabled, an involuntary change would piss me off.
There is also “reinforcement” bias. For some annoying reason I’m forgetting the real term, perhaps someone can help. This reflects the fact that, like “sour grapes”, we ALL tend to value what we can have more highly than what we cannot have. Thus people’s self assessments are generally biased towards reinforcing their current existence.
In more precise (but simplified) terms, disabled people** can:
1) Dislike their disability and be unhappy because they have/are what they do not like
2) Like their disability and be happy because they have/are what they like.
Most people will choose option 2. This reduces the cognitive dissonance and resulting unpleasantness. And from the perspective of the particular disabled individual, it makes perfect sense. But is does not mean empirically that the disabled person would like their disability if such a choice could be made “abstractly” such that they would not then have to dislike themselves. Everyone wants to feel validated.
Abled people have similar options, though they could also technically choose to become disabled. Someone who really, really, wants to be disabled would probably not be forced into option #1.
**blue: Would you prefer I use different terms? I don’t know what the acceptable language is, sorry.
Penny, maybe it’s that simple for parking spaces, not even really: someone has to designate you as “handicapped” in order to issue the tag.
But in other settings, like school, perception that a particular condition must be addressed through specific intervention usually requires some admission that it puts you at a disadvantage vis a vis the rest of the class. If you read sites for parents of “snk’s” (special needs kids) you will see a litany of “my kid can’t do this, my kid needs special intervention for that,” and so on. It’s not just about making things “equally accessible.”
Those who go through IEP/504 process often find that their requests are rejected because the student’s academic achievement is considered adequate, never mind that it could be much better. In this sense, the whole concept of disability can seem very malleable, and dependent on circumstance — not disabled as it pertains to calculus or physics, but definitely can’t participate in an able bodied gym class. Should a separate gym class or gym experience be fashioned specifically for that person? Doesn’t that depend a bit on whether you think it matters that the person can get something from it?
Barbara: exactly. And to elaborate, when I wrote my last comment, I was thinking specifically of getting compensation for disabilities caused by human agency (like toxic materials or an unsafe workplace or something). In order for me to file a lawsuit or otherwise seek compensation for damage done to me by someone else, I need first to be able to claim that it is indeed damage.
Barbara: Yep, been there, read the manual. Saying “My impairment puts me at a disadvantage in this particular situation” does not lead inevitably to the conclusion “therefore, my disability is a bad thing.” A kid whose disability requires accommodation at school should have that accommodation, not because they have something dreadful, but because the school is responsible for educating *all* the kids in the district, across a range of abilities. Some need a ramp, some need a “specific intervention.” Holding schools to their full responsibility to all children *is* about making education “equally accessible”.
Grouch–nobody would argue that losing an arm in an industrial accident (for example) is fun. Obviously, compensation is appropriate; it’s written into contracts and the law and insurance policies for good reason. But the loss of a limb’s function (for example) doesn’t necessarily translate into a life of lesser happiness, worth, or desirability.
Well, you have to define “equally accessible.” That’s where I think many parents disagree — because the effectiveness of intervention is judged by whether a kid is achieving on average, not whether additional intervention could bring out his or her full potential.
At any rate, I am not one of those who claims that a disability is a “bad” thing, however, more than a few people consider any disadvantage to be “bad” in some form or fashion, probably without really examining why.
Right–and I think that’s where any kid of advocacy gets powerful–when you start to see the ‘disadvantage’ as something imposed from without, as an injustice that *can* be addressed, rather than an inevitability based a personal characteristic (be it race, class, gender, ethnicity, sexuality, disability, whatever).
Barbara – WORD! My cousin has been battling with the school system over this concept for years, as her son has a mild learning disability. He functions just fine without accommodation – that is, he isn’t failing, he isn’t in detention a lot, and so on – but just one or two small tweaks to the classroom environment would probably let him excel (I say probably because designing accommodations for certain kinds of learning disabilities is still a fine art).
As for getting the label, even things that are not technically disabilities can have an adverse impact if attention keeps getting called to them. For instance, my father was left-handed. He is now right-handed – he taught himself to do everything right-handed one summer because he had a teacher who made a point of saying, “Now everybody – except Bob – use their right hand to …” and then giving him a separate set of instructions to accommodate his left-handedness. He was the only left-handed kid in the class, and this was called to everyone’s attention every time they did something chiral.
Some of the discussion above leads me to think about how people on all sides of this debate would react if we discussed the possiblity of correcting “normal” conditions. Suppose in thirty years, the scientific consensus is the following:
1. There is a feminine style of thinking that is utilized by the vast majority of women, and a masculine style of thinking utilized by the vast majority of men.
2. The origins of these different styles are primarily biologically based, deriving from genetic differences between men and women.
3. There exists certain cheap-to-produce medications that when taken regularly can transform masculine or feminine thinkers into androgynous thinkers.
Under these conditions, would society be correct to veiw masculine and feminine styles of thinking as epidemic mental illnesses caused by currently maladaptive evolutionary changes that should be regularly treated? Should people who wanted to remain thnking in masculine or feminine ways be viewed as living in denial becuase they do not wish to treat their mental illness and have access to a broader range of thinking styles?
Now, I do not acually put a lot of faith into EvPsych, but if the assumptions I described were true, I would actually be inclined to answer “yes” to my above questions. Would most Abled who think that any sane Disabled person would want their disabilities cured agree with me? And, as I also find myself sympathetic to Blue’s arguement, does that mean I should have more sympathy for those who would resist the push for androgynous homogeneity?
Not to derail, but:
It’s not the respect for difference that feminists have any problem with; there’s no feminist argument against the idea that some people have graphing calculators in their heads and some people are poets. It’s the fact that these differences are generalized and assumed to be biological despite a wealth of evidence of cultural separation. That’s the fucking problem. Take out all the premises about how that’s not problematic in the slightest, and the feminist irritation goes away.
Yes! My wheelchair was beautiful. In it I was a sleek oiled wheeled seal. I could balance on my back wheels, a feeling like a handstand. Perky and quick, turning on a dime, feeling like an athlete skateboarder bonded with my machine-body. Part of me was a beautiful machine. I could trust it.
I was not even that athletic. But the feeling was there.
The moments of betrayal, feeling betrayed by my body, and then realizing that I was not my body, I was not in control of it, and no one really was. Mortality. Limitations. Having to go slow. The pride of having battled body-shame and won. Desire and longing. Where was the thing that I identified as “I”? Ultimately, I was where I chose to locate myself. My body was not me. I was me.
Also – people not in chronic pain also don’t realize the absolute bliss of the absence of pain, moments to be treasured.
piny: I’m confused– Which comment are you replying to?
Penny: do you ever “fix things in place” so you can really evaluate them on the same plane? I sometimes feel that these conversations use too flexible of a hypothetical worldview.
Of course I agree that some of the problems of being disabled are imposed by the strictures of society. But since I also process things with some awareness of how things work and how changes have been made to happen, I don’t think that the “oh, this problem would be solved easily by ____” solutions are always realistic.
Solutions have costs. And the mere fact that they have costs isn’t per se a bad thing, but it DOES affect both their likelihood and also their priority. So it’s easy to say “but just one or two small tweaks to the classroom environment would probably let him excel (I say probably because designing accommodations for certain kinds of learning disabilities is still a fine art).” But that doesn’t really mean the disability isn’t a problem. It just means it can be compensated for. Because, of course, those “small tweaks” will possibly make the classroom less suitable for someone else and/or take budget away from someone else, and so on.
So in one respect I agree: It is, theoretically, possible for a society to make it such that a given disability or condition–I’ll use paraplegia for a moment–is compensated for. Society could choose to make it so paraplegics have the same (or better) quality of life as everyone else. The same (or better) opportunities, education, social life, access, transport, legal protection, etc etc. But that’s theoretical.
Not really. Illness is generally regarded as a deviation from normal. Normality is pretty much defined by prevalence. thereofe it would be pointless to define this as an illness. also, in a simplistic sense illness is a deviation from normality with BAD CONSEQUENCES. Being extra-resistant to bruising is not an illness; being extra-susceptible to bruising is. So unless “thinking male” or “thinking female” were judged to be “bad” then it’s also not an illness.
I’m losing track of your hypothetical, as I need more clarification to answer.
This is an interesting subset of abled folks. But not representative, I think. For example, I view disabilities as negative, all other things being equal. But I by no means think others who disagree with me are insane. Indeed, it is perfectly rational for people to have a different view.
Um, that’s the problem. There’s a big group of human beings whose equality is considered a choice–not a right. We “could choose” to extend equal rights to people with disabilities–huh? But we don’t absolutely need to, because…. ?
Society could choose to make it so paraplegics have the same (or better) quality of life as everyone else. The same (or better) opportunities, education, social life, access, transport, legal protection, etc etc. But that’s theoretical.
And in many if not most cases, a cure is a hell of a lot more theoretical. What Penny said.
Responding more to Sailorman’s comment #23:
I’m not so concerned with “politeness” as I am with discussions that get so abstract that the experiences and lives of actual people become unimportant.
Even so I think disability (like, say, race) is a tricky subject to discuss among well-meaning liberal types who don’t especially like offending others. That’s why I think abstract discussions are often more honest.
As with race, I think the best way to discuss is straight on, with nonmembers of the minority group understanding they may take some hits because of their ignorance or approach from the dominant cultural perspective. I think concerns about politeness and good manners do not necesarily lead directly to honest discussions.
Everyone is as happy as possible, to the best of their ability: We’re all people. But I see it as a relative issue: Would that person, in general, be happiER without their disability? Certainly for the A>D folks the answer seems to be “yes.”
There’ve been many studies that have found that people with severe disabilities rate their quality of life as highly as nondisabled folks do, despite evidence that the nondisabled people misjudge the disabled people’s QOL all the time.
Your point seems to be that abled folks cannot judge the lives of disabled folks because we’re not disabled. OK, then: You can’t judge the lives of abled folks, either, because you’re not abled. Only one group can really judge both, and it’s pretty clear what their vote is.
It’s true I wouldn’t call myself nondisabled or “able” now, but I have been. Despite a congenital condition, I ran, climbed trees, did cartwheels, played classical piano for ten years, and played intermural basketball as a child. Does that qualify me to judge? What’s the cutoff point?
Here’s the quote at the top of my blog: “Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, ‘normal,’ and sane….If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.” — Susan Wendell, author of The Rejected Body: Feminist Philosophical Reflections on Disability
Piny said: Disabled people may well be pressured to identify in different ways, and might develop different relationships with their disabilities, based on the nature and progression of their condition.
I do find this to be true. Look at the changing identification of Chris Reeve or Teddy Pendergrass to their paralyses. Note Michael J. Fox’s perspective, which became public only after he had had ten years to adjust to knowledge of his Parkinson’s. There’s a learning curve, and no doubt other psychological trends that differ depending on nature and progression. But the variation of experience is endless.
Sailorman: In more precise (but simplified) terms, disabled people** can:
1) Dislike their disability and be unhappy because they have/are what they do not like
2) Like their disability and be happy because they have/are what they like.
Most people will choose option 2. This reduces the cognitive dissonance and resulting unpleasantness.
I understand your point, but I don’t think asserting that there are joys in my life caused by my impairments reduces any cognitive dissonance when conventional wisdom — and the medical world — asserts that I need a cure.
On terms: I have strong opinions but I try my best not to be the language police. I like “disabled” and “nondisabled.” I especially like the double-negative of “nondisabled” that supports the temporary reality of ability.
IMO, “handicapped” is like “negro” or “colored.” I generally view usage of outdated terms as a sign of how tuned-in a person is to current politics and culture. Not every disabled person agrees, but that’s my view.
… the cost of the solution may outweigh, in the eyes of those who make decisions, the benefits. Given the wealth is limited, you have to choose between projects. If you can make life for one single, blind student easier instead of a new desk for the principal, would you do it? At the cost of a new computer room? At the cost of a redesigned parking lot that may save lives?
Or even at the cost of lectures being interrupted by his constant questions?
IMO, “handicapped” is like “negro” or “colored.” I generally view usage of outdated terms as a sign of how tuned-in a person is to current politics and culture. Not every disabled person agrees, but that’s my view.
There’s also a correlation, IME, between the age of a term and how likely it is to be imposed on rather than adopted by the group in question. “Homosexual” vs. “gay,” for example.
It costs money to educate girls too–but we don’t argue that the money would be better spent on giving the boys better computers. Education is expensive–but it’s an investment. The alternative–leaving some kids uneducated, or undereducated–has been tried for centuries. It doesn’t work, and it doesn’t save any money in the long run.
What is the difference between a blind person and a seeing person who elects to often wear a blindfold? What is the difference between a paraplegic person and an ambulatory person who elects not to use his/her legs?
If an impaired person without the usual uses of his/her body learns to thrive without the usual physical capacities and gratifications, he/she has definitely transcended “cultural mythologies about the body.” Why is the same not true of an “able” but ascetic person who elects never to indulge in physical or bodily gratifications?
On a shallow glance, non-impaired persons would probably think that the disabled possess no unique experience, because any abled body person could decide not to use a faculty or ability (some would take more discipline to shirk than others). But I guess that assertion is allegedly invalid because these hypothetical non-impaired persons are not actually feeling the experience of the impaired because their condition is voluntary. They always have the option of just using their legs or taking off their blindfolds or gratifying their flesh. Although they could mimic the experience of an impaired person, it’s not the same experience because they have a choice in controlling it.
It would seem that the unique, non-replicable, and equally valid life experience of the impaired is contingent upon them not having a choice. It’s not enough that a person decides to plug their ears and not hear sound or music. To experience the bona fide life a deaf person, one must be incapable of ever hearing sound or music. The person cannot have the option to experience sound floating in the back somewhere.
If inability to change the impaired condition lies at the heart of the unique impaired existence, then one should find all medical science abominable. Natural vagaries and accidental events impose upon humans a drove of conditions which would be involuntary save for scientific and technological intervention. Prior to pacemakers and cardiac surgery, persons with cardiomyopathy or congenital irregular rhythms were probably unable to do the same phyical tasks as persons with “normal” cardiac conditions. Medical artifice means that that is no longer the case and many persons with those conditions can do the same physical things as persons without cardiomyopathy or angina. Perhaps some persons with a cardiac condition may refuse such surgery or medicine and prefer their condition as it is, finding some sort of unique dignity in it. They’re free to do so. Does that mean that persons who develop such treatments which give the option of exercising non-cardiac impaired capacities are genocidal and racist, driven by some condescension or arrogance? Is it disgusting that they try to pioneer such things? Is it disgusting to pioneer a “cure” for paralysis which would be available for those who want it? Or is it just disgusting to impose it or declare that the paralyzed OUGHT to take it.
Maybe someday they’ll develop a mimetic pill which allows a person of one sex to morphologically become the other sex, actually generating the genitals, organs, glands and hormones of the sex that they want to try. Maybe some people may market is as the “cure” for being female. And maybe it will just be available for people who want to experience something which physical strictures once denied them. Does it actually degrade the experience of a man or woman if there is a pill that allows them to physically opt out of that role?
… the cost of the solution may outweigh, in the eyes of those who make decisions, the benefits. Given the wealth is limited, you have to choose between projects. If you can make life for one single, blind student easier instead of a new desk for the principal, would you do it? At the cost of a new computer room? At the cost of a redesigned parking lot that may save lives?
Or even at the cost of lectures being interrupted by his constant questions?
Have you ever sat in a lecture hall? If that kid interrupts with “constant questions,” the professors will love him forever. At least he’ll be showing them that he’s awake.
First of all, this scenario shows a pretty marked ignorance of what things actually cost. Most of the time, accomodations are not terribly expensive–they certainly aren’t the crippling financial burden that anti-disability-rights alarmists pretend. It is extremely unlikely that the education of a single blind student, or even several blind students, would deprive everyone else of a new computer room. Nor is the benefit of those accomodations hypothetical–disabled kids with accomodations do not typically remain unable to learn. It’s also worth pointing out that a blind adult who hasn’t been admitted to school will have far less options in terms of supporting himself; that cost needs to be taken into account as well. And given his eagerness to learn, who knows what contributions he might make given the opportunity?
That having been said, this is a horrible argument. There is no plurality of cheap people, no one whose welfare does not involve serious community investment. Most people are special; many if not most people are injured or ill or otherwise preoccupied at some point in their lives; all people age. Need in one sense or another is universal, and a mature society recognizes that. It helps no one to project infirmity on one group such that they are deprived while the majority lives in fear of joining them.
Some biogerontologists disagree with the supposed inevitablity of senescence.
http://en.wikipedia.org/wiki/Engineered_negligible_senescence
I’m sorry? Are you saying that girls are harder to teach that boys? Are you saying that there is a worse return on teaching girls that boys? Are you saying that it is a better investment to educate boys? Unless you have data to support these claims, then what you said is irrelevant to the discussion.
I am saying that a city with a limited transportation budget may decide that it makes sense to leave one metro station without wheelchair access and spend the money on replacing obsolete cars. I am saying that I would not support a school board that requires its teachers to choose between describing, for the benefit of a blind student, everything they draw on the blackboard or not using it at all.
I would not respect parents who do not do their best to get as much support and accomodations for their handicapped child as possible. I would also expect the people who allocate the funds to consider whether the money could do more good elsewhere.
As an example of a real life choice, I remember reading that some school’s administration forced a track team to let a girl on a wheelchair compete with everyone else. Whether you agree or disagree with the decision, you must admit that it is just may be possible that the best runner did not like to be beaten by someone using mechanical assistance. That it just may be that some insensitive jocks felt the contest was rendered meaningless. That it just may be that some people’s interests were disregarded in favor of the handicapped girl’s.
I do not know enough about that particular case to tell whether the line was crossed, but I feel that there is a line. That at some point, the cost to society outweigh the benefits to the disabled.
Of course not–and I don’t think any of these statements are necessarily true of kids with disabilities, either. They’re not always harder to teach, there’s not always a “worse return” (depends on what counts as a return), and I don’t believe any kid is a bad investment. If you prefer, switch around the genders in the original; the point remains the same: all kids need to be educated; no category of kids should have their education sacrificed for the benefit of another category’s education.
Nothing is “automatic” now. In the US, the proccess is all spelled out in the IDEA, which was originally passed in 1975, with frequent reauthorizations–so there have been over THIRTY years of a system in place to decide how to spend school funds equitably. The law isn’t perfect–no law is. If you don’t like the way the system works, that’s what activism is for–learn more, get involved, make it better. Better than relying on a few publicized cases to give you a sense of how the system really works.
I learned some things about decnavada. On this, I have to agree with E.
Fuller Torrey that if one thinks that his brain is implanted with a
microchip and thinks he is hearing CIA voices normal or if one thinks that he
is receiving messages from alien beings normal then he lives in a fantasy
world. I do not know of any society in the world that considers this normal
behavior.
I could not interpret his original attack on me but now the nature of the attack
is clear. I thought the moderator intended to keep things civil. I know that
among certain parts of the left it is “politically correct” to pretend that
psychiatry does not exist. I am wondering who the real failure is, and I
consider myself a leftist. It is true, however, that Lysenko in the Soviet Union
did not believe in genetics (and killed millions of people in the process when
Stalin put him in charge of Soviet science and agraculture).
I am assuming that this attack is not from someone at Bazelon because I have
assumed that they had too much scientific integrity.
Hmm… yes. I’ve sat in halls in which professors did not have to wonder whether people were paying attention. And frankly, I was not concerned about the professors’ interests. I was thinking about the other students who had paid about about a buck fifty to hear someone ask a question that was answered on the blackboard.
As for the costs, at that time there was exactly one blind student. The hard costs of accomodating him may not have been staggering. I know that the traffic lights, the hallways, the gatekeeper terminals started talking. It the costs were less than his tuition, I’d be surprised. I also know that in two of the three classes I had in common with him, he was hated by a significant number of people. I do mean hated. The third class was a humanity requirement, so no one cared.
And anyway… I started posting on this topic because one of the posters had a problem with someone deciding that a particular student did not need anymore spent on him, because it looked as if he was doing just fine. I think that someone has to be allowed to make that decision.
I remember hearing about this case and being cheesed off thinking the same thing Petar thought. This thread reminded me of it, so I googled a bit and found this Washington Post article. And the article goes to show that I really need to stop basing my opinions off crap I hear on the internet.
Tatyana McFadden, the wheelchair athlete, sued to race alongside the other students. Before, she was allowed to practice and travel with the team but she had to race in the wheelchair races. And as she was usually the only wheelchair athlete, she usually raced alone. She didn’t like that very much, hence the lawsuit. The judge gave her a temporary injuction allowing her to race alongside the runners. But the school thought it required her to race with, i.e. compete against, the runners. So, there was some confusion over that, but the judge clarified his ruling; she would still be in a wheelchair race, but she would be wheeling alongside, not competing against, the runners.
Also, if a (non-motorized) wheelchair doesn’t count as “mechanical assitance” because it’s powered by muscles? Then bicycles and unicycles shouldn’t count either. Runners, bicyclists, unicyclists and wheelchair atheletes all in the same race. Won’t that be fun?
How exactly do you bifurcate between “illness” and “disability”? They have comparable effects upon a person. The causes of either cannot be separated. Things traditionally considered “illnesses” can be caused by genetics, and chronic disability can be caused by pathogens and other acute agents (Elephantiasis, River Blindness). What traditionally separates the categories is the acceleration and rate at which they affect the person. Is the only separation that “illnesses” result in death and disabilities usually do not? Persons with cystic fibrosis live to about 35-40 years. Before they reach that terminal point, they do shoulder physical debilitation, fatigue, pain, respiratory impairment and taxing therapy. But because their condition is usually terminal, they are among the “ill,” not the disabled? It’s totally unacceptable to compare Parkinsons and disability?
When Parkinson’s begins to have its effect upon a person, is that person “ill” rather than “disabled,” even though that persons shares a great deal of aspects with a physically disabled person? Some cancers take decades to kill their victim, though in the meantime the cancer patients may suffer a progressive loss of physical capacity and an increase in pain and discomfort. Where exactly is the illness/disability division? It’s an illness if it kills or damages at one rate, but a disability if it damages and leads to death at another rate? Why are Cancer patients in an entirely different boat? Why is it “insulting” to be likened to that boat?
I am sorry, I keep messing up quotes, and I cannot figure for the life of me why. So I will quote you the old fashioned way:
Bean wrote:
> but I would bet any money that the girl was not using a motorized
> wheelchair, and was relying on the stength of her upper body. So,
> I’m not really sure that there is any “mechanical assistance” going
> on at all.
Do you think that runners and cyclists should compete in the same events? Or that some javelin throwers should be allowed atlatls?
Bean said: I also find it very telling (and insulting) that anyone would think that comparing a disability with an illness like cancer is an acceptable comparison.
The difference between disability and illness is on my short mental lists of topics to write about sometimes soon since I was most definitely ill recently and I’ve been thinking through how that was different from my identity as a disabled person.
I haven’t figured it all out, but “disability” seems relatively static and “illness” is more about change. My personal detector for the difference is when some stranger says “God bless you,” do I want to flatten them or not?
I want to go back a long way for a while.
In these terms, I’m an A>D. I am happier with my disability. My disability itself does not make me happier, but I am happier in my disabled body than I was in my TAB body, and I am happier in my disabled life than I was in my TAB life. I write about it here.
My impairments did not prevent me from living my pre-dancer life. I could have continued to function at a very high level in that world; success was dictated by my facility with words and by my critical thinking skills. The disablement of my body did not affect that.
So, by definition, I was not prevented from living that life. There were environmental factors that made it difficult, but I was able to sit easily, depending on how you argued it, in any of the top 3 positions in my field. If I was “disabled” at all, it was by those around me or by the world I lived in.
[Broken link fixed – with a little guesswork – by Amp. Please let me know if I got it wrong. –Amp]
The cost/benefit issue in the school system is emotional and probably impossible to resolve. What I find interesting is when parents of children in need of intervention come up against the belief that so long as their child is displaying average achievement, the school has done its job. I know I already said this, but in terms of how we define disability, I do think you have to consider that there are many disadvantages that schools are not required to ameliorate, and certainly do not have funding to address — I was the child of a mentally ill parent, one of four, and there is no doubt in my mind that our school achievement would have been greater if we had counseling services, because our home life sure interfered with our school performance, but it would never have occurred to me that the school should or would provide such a service.
Some disadvantages have the weight of federal corrective mandates behind them. We call these disabilities and people who have them are entitled to services that people who do not have them are not, presumably because the non-disabled do not need those specific types of services. But please spare me the idea that IDEA is simply levelling the playing field. Certainly, it is needed, it corrected horrendous neglect of children, but there are many children whose needs are not met simply because they do not fall into a category that can be conventionally described as disabled.
This is why, in some cases, the parents of the disabled meet resistance for more or sepcific types of intervention. Would that we had the wherewithal to achieve the full potential of every student, both socially and academically, and the issue is not always financial. Case in point: I live next to a very large school district, probably one of the larges suburband districts in the country, with close to 200,000 students (that’s not a typo), and this district is pretty well managed. Because it is so large, it runs its own programs for the disabled and consistently wins cases in which parents seek private school tuition. But every so often a parent sues because the district recommends private school — and the parent wants mainstreaming, for social not academic reasons. And there the battle is joined: to what extent is it appropriate to put someone in a class with other children when his needs are so great that he will clearly need much more attention from the teacher and assistants? Is the school justified in factoring in the impact of his inclusion on the other students? If the school has funds to hire an attendant just for him, that might work, but at any rate, the fight is usually over whether that should be necessary when the school has “appropriate” alternatives.
Petra wrote “Do you think that runners and cyclists should compete in the same events? Or that some javelin throwers should be allowed atlatls? ”
Okay, so the choice was between a girl who cannot run, and must use a wheelchair racing alone, or racing against running students. And you are saying she should be left by herself because otherwise it might hurt the other kids feelings? WTF? It was a piddling little race in a piddling little school, for FUN. It’s not like it matters if she won, or lost or came in the middle because she got to use a wheelchair – coz let’s face it, ever kid she races against would be pretty sure of beating her without one.
Megalodon writes in comment 60:
this is fascinating stuff, and thank you…but it won’t be at the corner drugstore for quite a while yet, so until it is, the effects of aging, difference exist.
Barbara, I’ve been thinking about this very issue a lot lately, not just because of my cousin’s situation. I think the answer has to be, it depends. In large school districts like the one you talked about, the Big School District probably has enough kids with particular kinds of disabilities that they can have a whole wing of a school, or even a whole school, dedicated to, say, kids with ADD, ADHD, and autism. Small School District, on the other hand, might only have enough students with ADD, ADHD, and autism to put them all in the same classroom, and I think that’s where you start running into the resource cost/benefit limits. So in Small School District, the principal and the teacher would have to look at the level of resources needed to mainstream an autistic child vs. a blind child, because that autistic or blind child might be the only one in the whole school, and they might decide that they can accommodate the blind child more easily than the autistic child. Impairments perceived as mild might be more easily accommodated than severe ones in Small School District, I think (although I might be wrong) because of the whole economy of frequency thing. As to fairness, I think if you get to the point where having the disabled child in the classroom means that the other kids get to slide on behavior and academics because the teacher is spending a lot of time dealing specifically with the disabled child, then that is too disruptive and unfair to the other children. But if the teacher needs to do some extra preparation (say, 15-30 minutes a day) and give separate instructions for some activities, then this is not terribly disruptive and the effort to accommodate should be made. The problem is, you can’t really tell most of the time how much effort it will be until you actually do it, or unless the disability fits into a category where it has been done before, so you already do know roughly how it should go. But this is just my opinion.
One of the issues in our school district has been resource allocation. To meet No Child Left Behind Act requirements, a chunk of resources that used to be dedicated to mild impairments has had to be moved into helping the bottom 10% of each class improve their scores. There is also now a limit on resources for more severe impairments – for instance, there are only 20 slots for ADD/ADHD/autistic children in the whole school district; the kids with that label are ranked by severity of disability, and the 20 worst get into that program. The rest are mainstreamed, and the parents who object to that and send their kids to private school generally do not get reimbursed (even though the school is supposed to do that) because their kids have been rated as able to be mainstreamed. In this situation, kids like my cousin’s son lose out completely, because they are comparatively closer to “normal” than these others and what’s wrong with being average, anyway, says the school district.
You seem to be echoing Fukuyama’s argument, that human equality is contingent upon a shared vulnerability and weakness. That is, all humans are physically mortal and will succumb to senescence if not some other means of death. His alleged reason for attacking transhuman scientific advances, developments that would minimize or eradicate physical vulnerabilites and impairments, is that these developments will create genuine and fundamental inequality. Persons who through scientific intervention can leave indefinitely live with few and fewer physical/natural confinements will actually be superior, according to Fukuyama.
I think it’s dangerous to predicate human moral equality upon a temporal biological reality, no matter how permanent that biological reality may appear to us. Even if one accepts that there’s no qualitative distinction between the capacities of “normal” and “impaired” persons because all humans eventually succumb to impairment (death), that’s placing the tenet of equality on the basis of a supposedly universal, but now potentially reversible biological reality. If this senescent alteration therapy comes about (as Grey hopes it will), would that change your outlook about the moral perspective between persons of different capacities?
I guess I’m a little simpler than that.
As of now, impairment happens in life,
As of now, impairment often begins/increases/multiplies with age.
Is impairment inherently negative? Blue says no…and I’m chewing on that.
What you learn with difference or impairment is another thing or two
Interdependence will become a universal, for the moment, until the therapy you cited comes to pass. Not “frailty” Not “weakness”
Adaptation, I think, as well as itnterdependence, We either figure it out or are shown it through results of experience.
I honestly don’t have a reaction as to how my perceptions would be altered if the “reality” of aging, or difference changed.
I’ll admit, I’m wary of anything that smacks of eugenics.
Eugenics involves the controlling and manipulating whatever genetic traits are passed to offspring, which requires reproduction. If any individual has an indefinite biological lifespan, reproduction is redundant and vestigial, suiting only recreational curiosity and amusement.
It’s one thing if persons coerce the reproductive acts of others to reify their vision of better offspring and continuity. If individual persons endeavor to and succeed in overcoming physical previously inevitable physical “realities” (since you refuse to call them “weaknesses”), is that as horribly offensive as a coercive eugenic campaign? Have they broken some bedrock of human equality by attempting or doing so?
Megalodon said: Some biogerontologists disagree with the supposed inevitablity of senescence.
Eh. That some scientists think aging isn’t necessarily inevitable doesn’t mean much so long as the actual methods to make that happen are still complete science fiction. The theoretical aspects of a society where people live for centuries is interesting to contemplate but really isn’t relative to a discussion about what people need today in practical terms. A red herring, in other words.
How practical is a discussion about perfectionist and normative notions of the human body which are unlikely to change bigoted conventional widsom? You tread upon philosophical ground, not just funding apportionment stats. Other persons proferred links between the practical matter of impaired persons in society and the theoretical universality of human mortality and vulnerability. If imfunnytoo’s link is valid, then theoretical discussion about the perpetual universality of impairment and senescence is relevant to philosophical discussions about perception of humans and is not a red herring.
No, the actual methods are in practice already, they just have not been applied in concert. The theoretical aspect involves coordinating the regimen of stem cell injections, immunotherapy filtrations, and telomerase therapies. The actual methods themselves are already fully extant.
How practical is a discussion about perfectionist and normative notions of the human body which are unlikely to change bigoted conventional widsom?
I have no illusions about ending ableism, but I think discussing “perfectionist and normative notions of the human body” is not only practical but vital to saving lives that are not valued under normative standards.
You seem to be presenting the biogerontologist view as another “someday there will be a cure” argument. My stance on that as a disability activist is that I don’t need a cure, don’t expect one and wouldn’t want the quest for one to divert from the immediate, practical needs of people today.
I believe I’ve been policing this discussion a bit and it’s not my intention to do that. Carry on, if you like.
No, somebody asserted that because all humans currently succumb to senescence, if not some other means of death, that all humans eventually encounter impairment and cannot escape it and that this current fact was of normative significance. I merely wondered if the alteration of this temporal biological reality would change this normative significance.
If such a thing came about, I’m all for individual decisions in whether or not to accept it. Though the persons who chose different paths may come to deride each other. The mortality-choosers may view the humans with indefinite longevity as criminals against nature or renegades against God, and the indefinite lifespan humans may view the mortal ones as suicidal luddites.
I haven’t the theoretical or scientific expertise to discuss a potential future in the abstract, so I will bow out,saying that my preference is for examination of what impairment means to individuals that experience it today, now, and what easy assumptions about it may need heavy examination and even overturning.
The mortality-choosers may view the humans with indefinite longevity as criminals against nature or renegades against God, and the indefinite lifespan humans may view the mortal ones as suicidal luddites.
The God renegades against the Luddites. Politics is always such fun.
I do wonder if “disability” is the right conceptual category here. Different disabilities impose different limitations and abilities. My disability is complex partial seizures, and I find it hard to believe that, at least for me, there are any benefits whatsoever from that. Periodicly becoming unaware of my surroundings, followed by exhaustion and head-splitting headaches? I’ve never seen any benefit from that, nor do I see how I could.
I’ve occasionally had generalized tonic-clonic seizures while sleeping, which make me sore all over and my tongue, which is seriously bruised and bloodied, all but unusable for days, and painful for weeks.
Tony: I’ve tried to distinguish “impairment” from “disability,” the latter being the social effects of cultural ideas about impairment. But it’s certainly true that not every situation will show benefits (or joys) for people. It’s also true that not everyone with an impairment will agree with me. I’m simply challenging the assumptions about impairment as a universally bad situation.
Prosopagnosia. A few years ago, I saw a webpage by a woman who has it, with a really interesting visual explanation of what people look like to her, and how she succeeds and fails at recognizing them.
Wonderful post, thanks Blue. And I’m impressed with the level of the comments. So often I have to walk away from discussions like this which end up with people airing their prejudices about how it’s simply obvious and common sense that it’s bad to be disabled. OK, there are some people here who are not quite clued in, but the general standard of politeness and open-mindedness is really refreshing.
Penny’s comment at 41 made me feel like cheering, thank you so much. It’s not a calculation about whether it’s “worth” using resources to generously award a few accommodations to poor disabled people, because we as a society are so nice and feel sorry for them. It’s about rights.
My theory (completely pulled out of my hat) of how there might be an advantage to a disabled body is like this: there are a great many psychological mechanisms in place to create a sense of continuity over long periods. It’s not actually obvious why we should have a strong sense of connection with one’s self of 10 years ago or ten years in the future, but that sense is extremely important for most people to be able to function as humans.
If someone has been disabled for a long time, or for their whole life, that’s part of their sense of self, of who they are. In fact, it’s just the same with able-bodied people: your physical body, with all its imperfections and disadvantages in society, is part of who you are. Most people don’t want to erase their own histories.
Add to that that most “cures” for disabilities and chronic conditions are far from the magic wand which makes the condition go away as if it had never existed. A person with a cochlear implant is not a person with normal hearing. A person on anti-depressants is not a non-depressed person. Many such cures are painful, debilitating, expensive and so on, and even then don’t work entirely. I know some disabled people who say they would take the magic pill, as Penny mentioned. But they wouldn’t go through actual, realistically available procedures for the sake of possibly achieving a fraction of the ability that society considers normal. And some, as she mentioned, wouldn’t even take the hypothetical pill.
Individ-ewe-al, I agree with most of what you have said. But what you seem to be saying–correct me if I’m wrong–seems more along the lines of “the cure is worse than the condition”. I can easily see that. Some “cures” are horrible; some disabilities are minor. But do you think this answers the question of whether the disability is objectively desireable? It seems to me it’s more an answer to the question of whether the disability is subjectively the best option given that it already exists.
blue, I was thinking more about the “disability like cancer” comment someone wrote above, esp. with reference to the effects of choice on classification. I’m curious if you think this is accurate:
I think the tendency to conflate disability and illness focuses on the involuntariness. And I agree it is a poor analogy.
There are certain conditions in life that are chosen voluntarily by some but abhorred by others who are forced to endure them: abject poverty, pregnancy*, isolation, togetherness, etc.
Then there are conditions that are INvoluntary, but about which most people are reasonably equinimical or happy, because they can’t change them: family status, height, sex, race, disability.
Finally, there are conditions which are INvoluntary, and make the “owners of this condition pretty unhappy, by and large: cancer, disability, etc.
I think folks who equate cancer=disability are focusing on the third group only. Top be honest, I probably would have done so myself a decade ago. And in a limited respect they are correct: you don’t get to choose either of them, and nobody “seeks out” disability. Furthermore, a distinct subset of people who have disabilities are unhappy about it (and I assume most people who have cancer are unhappy about it).
But what that argument MISSES is that disability ALSO shares the ‘involuntary’ and ‘unchangeable’ MIDDLE category with such diverse things as what sex you are, whether you are heterosexual, and where/when you were born. In fact, because disability is more who one is than, say, cancer, and the middle category is more of “who one is”, disability is much more similar to the middle category than the bottom category. That is why cancer=disability is incorrect.
Do you agree with this analysis?
**(way OT, I know, but: This line of thought is the reason that I find the “pregnancy as parasite/disease” argument problematic; some folks seek out pregnancy, but nobody seeks out parasites and disease.)
I have complex-partial seizures too. I do treat them. But in the past, both my seizures and my migraines (another “all-bad” thing by most people’s standards) have involved euphoria. I can easily see why some people would choose not to treat those things.
I’ve lived my entire life with a kind of pain that is considered among the most severe possible. While, again, I treat it, I can’t say that experience has been wholly negative either.
But I’m uncomfortable with the idea of neatly parcelling out parts of my body as negative and parts of my body as positive. I do accept medical treatment for some things, and not others, but I still don’t view all these things as separated rather than complexly intertwined.
I’m also autistic, and this (in me) appears to be connected to a genetic trait that in my case shapes several aspects of my body beyond my brain. It’s the same gene, doing all kinds of different things, some of which I like, some of which I don’t like, some of which I’m indifferent to, and some of which I both like and don’t like in various ways. How can anyone truthfully reduce all complexity to add up to negative just because it’s not normal?
As for schizophrenia, there are too many different things that can get called that for the term to have any meaning — not all of them involving hallucinations or delusions. Autism was once considered childhood schizophrenia, and was moved out of the category more for historical and political reasons than because autistic people don’t meet the criteria for schizophrenia (we almost always do, except for the “excluding autism” clause). In that sense, I suppose I’m also a “schizophrenic” (was even actually diagnosed with childhood schizophrenia by some medical throwbacks) with no desire for a cure.
(I don’t consider “autism” to be separate from “schizophrenia” or part of “schizophrenia”, because I don’t consider “schizophrenia” to be anything more than the remnants of someone’s miscategorization of a whole lot of totally different kinds of people and experiences, including those of some autistic people. Autistic people may have escaped that category earlier than some, but the category is still such a totally mixed bag as to be meaningless. E. Fuller Torrey is as dangerous as Bernie Rimland in my book, which is to say both have made bits of contributions and then tried to roll human rights back several decades.)
I use a wheelchair most of the time. Both the way my body moves in the wheelchair, and out of it, are valuable to me. I am relatively indifferent to whether I need it or not, though — if I suddenly didn’t need it, I wouldn’t mind, and if I suddenly needed it for everything, I wouldn’t mind.
Basically I see a lot of things as happening in the flow of life and all this splitting up of life into word-world-good and word-world-bad seems meaninglessly abstract to me. Some things just are.
Just as a quick note as I’m the one who made the cancer analogy–I agree that it’s not even close to 100% analogous to disability. I was using cancer as an extreme example to illustrate that “some people enjoy, come to terms with, or derive benefits from Situation X” does not equate to “Situation X is a good thing.” I’m not attempting to argue that disability (or impairment, if that’s more accurate for the purposes of discussing Blue’s post) is a universally bad phenomenon.
Though I do agree with Megadolon that illness and disability, while not 100% analogous, are also not 100% disanalogous, and I absolutely do not agree that it is insulting to make that comparison.
Individ-ewe-al: Well said.
Sailorman: I think the tendency to conflate impairment with illness isn’t as well thought out as you suppose. I think our culture teaches people to mentally react “Oh, look at that poor thing!” to any body that fails to meet standards of normalcy. I suppose a belief that it’s involuntary is built into that since the same reaction does not generally occur when seeing people with blue hair or piercings all over their faces.
I would agree that a lifelong — or decades long — experience with impairment has more to do with who one is than an illness like cancer, though that can be a decades-long experience too. Or it can resolve itself but leave behind impairment. For example, bone cancer that leaves someone with an amputated limb.
Ballastexistenz: You are my latest internet crush. You’re always saying something that fascinates me and keeps me thinking.
Okay, if it’s a given to make the discussion “correct,” to drop cancer off the list, I’ll do that, even though I dislike doing so, because: The cancer *isn’t* just about the cancer, as someone said above: It can leave consolation prizes “You’re alive, but *guess what!* Tell them what’s behind door number three, Johnny!
Brittle, weaker bones. Higher risk of mouth cancer, and weakened cracking teeth..permanently weakened immunity…and a resurgence of other preexisting stuff because the whole body got so smacked around by the chemo, as in sudden, random bouts of intestinal unacceptability, with little time to manage it. Amelioration is sometimes possible, but only sometimes.
But, I’ve got others. Others that fit Blue’s paradigm.
I love sitting still. And I’m better at it than my able counterparts at work.
My body’s had a lot of time to get used to being still. If I’m not chatting up at the water cooler or flying over to my best friends cube to chat, I’m at my desk figuring stuff out. It gives you time to think. Be more self aware. Understand tasks, relationships, beauty, discussions, more completely. Which is why I wouldn’t give up cerebral palsy for nuthin.’ Because I wouldn’t have been able to get through my life up to now without long bouts of sitting still and thinking.
The able seem so “motion hungry” sometimes.
Penny:
But the loss of a limb’s function (for example) doesn’t necessarily translate into a life of lesser happiness, worth, or desirability.
Well, no, and I don’t think I was arguing that it does. I was saying it was a disadvantage–but a disadvantage doesn’t have to destroy the worth of a life or the happiness of an individual.
Right–and I think that’s where any kid of advocacy gets powerful–when you start to see the ‘disadvantage’ as something imposed from without, as an injustice that *can* be addressed, rather than an inevitability based a personal characteristic (be it race, class, gender, ethnicity, sexuality, disability, whatever).
This is where these discussions start to get really interesting from a theoretical POV, IMO, because most disadvantages of any kind are to a large extent culturally constructed rather than “inevitable”. But for most of these supposed disadvantages, there are no groups advocating that society adapt so that they are no longer disadvantages. This is because we think many of these disadvantages should be disadvantages. So what tools do we use to distinguish between something that should remain a disadvantage (like, say, being an asshole) and something that should definitely not (race, gender, sexuality, disability, etc.)? There’s a point at which the distinctions become very fine and nuanced.
I love sitting still. And I’m better at it than my able counterparts at work.
My body’s had a lot of time to get used to being still. If I’m not chatting up at the water cooler or flying over to my best friends cube to chat, I’m at my desk figuring stuff out. It gives you time to think. Be more self aware. Understand tasks, relationships, beauty, discussions, more completely. Which is why I wouldn’t give up cerebral palsy for nuthin.’ Because I wouldn’t have been able to get through my life up to now without long bouts of sitting still and thinking.
The able seem so “motion hungry” sometimes.
I know pretty much every inch of a tree that was outside my window when, due to a combination of mobility impairment, wheelchair-inaccessible apartment, and severe migraines, I spent nearly all my time lying on the exact same couch. I know how it changed with the seasons, I know various subtle differences in how it looked day to day, etc. This is not stuff that people who walked by it on the way from their apartments to work were going to be noticing.
And I always think of that when people claim that they cannot imagine living like I’ve lived, that there are no advantages to living how I have lived, that basically all these things have done is make me miserable and nothing positive at all.
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