Sufficient Scruples

Bioethics, healthcare policy, and related issues.

July 26, 2006

Progressive Obliviousness to Disability

by @ 3:14 PM. Filed under Access to Healthcare, Autonomy, Disability Issues, General, Healthcare Politics, Medical Science, Personhood, Provider Roles, Theory

An old article by Mary Johnson that I just stumbled across in Ragged Edge Online asks why liberals “don’t get it” on disability rights:

During the debate over Terri Schiavo last fall, disability activists and scholars groused about both right-to-life and right-to-die advocates not understanding disability rights issues. . . . 

It’s “downright weird,” says Michael Bérubé, whose 1996 book, Life As We Know it,about raising disabled son Jamie, became a bestseller.Bérubé calls liberals “oddly reluctant to see disability rights as part of a program of egalitarian civil rights.” . . .

Many leftists, says writer Marta Russell, simply think there is no movement; some believe the disability rights movement is too small to qualify as a real “movement.” There are more substantive reasons as well. “Some leftists don’t believe disability is an oppression that belongs on a theoretical par with race, gender or class. They may think disabled peoples lives are difficult and social justice lacking but they don’t see basic underlying institutional relations at work when it comes to disablement.” . . .

“I wish they understood that it was civil rights,” says Cyndi Jones, head of the Center for An Accessible Society. “Talk to progressives or liberals (which I use interchangeably): they just don’t see it as civil rights.” . . .

Jones talks about attending progressive media conferences and being the only one there concerned with disability rights. “They never think about making sure the meeting site is accessible, either,” she says. ” When you complain, though, you’re seen as a ‘whiny cripple.'”

An activist invited to be on a liberal talk show on public television finds the producer resisting the need for a sign-language interpreter, even when the activist offers to pay the cost. A progressive bookstore owner provides a ramp to a locked entrance and offers a doorbell; he is offended when local activists protest the segregated treatment. Liberals involved in election reform organize to stop new accessible computerized voting machines, arguing that they’re open to fraud.

These are good points.

It’s possible to question both the pervasiveness of the problem and the specific examples of it given here. For instance, I would be surprised to find that most “liberals” (however we define that term) don’t think anti-disability discrimination is a civil rights issue. And, while I agree that inaccessible public facilities are unacceptable, I think you can optimistically attribute much of the continuing problem to building owners’ reluctance to spend money fixing it until they are prodded, which, while disheartening (and a violation of the ADA), is hardly the same thing as banning blacks from your lunch counter. As for voting machines, that is a straightforward trade between democracy for all voters and voting access (to compromised machines) for some; I think the voting integrity problem is very significant and I also support banning electronic voting until the machines are proven secure, but that’s certainly not a preference against voting by the disabled. (Nobody is arguing that we should insist on non-accessible machines, only on accessible machines that are honest and reliable.) It seems to me like both mischaracterizing and overstating the problem to insist that people are against disability rights simply because they have a different resolution of these competing priorities (or because they don’t prioritize disability issues as highly, among all progressive concerns, as disability activists do!).

I’m also concerned by the conflict many disability activists seem to see between disability rights and autonomy-centered rights to termination of unwanted treatment or life support. I am trying to understand the depth of concern there obviously is in many quarters of the disability community on this issue, and to put it in the context of historical abuses and neglect of the disabled. But I am also very concerned about any attempt to roll back, block, or interfere with the rights of informed patients to make and act on any authentic preference they have for their own care (and I don’t regard it as a legitimate aspect of “informed consent” that activists with their own agendas try to convince patients to agree with them before they are allowed to carry out their decisions). From my perspective, disability rights and the right to terminate unwanted treatment are two instantiations of the same broad moral principle: the right of self-determination. Of course the disabled should have full access to whatever facilities and opportunities society offers, and support in maintaining their independence as far as possible; at the same time, it is equally obvious that no one should be forced to undergo a treatment or intervention that they do not want, or that does not support goals they choose for themselves – which includes unwanted life support in some cases. It worries me that an important group, whose needs progressives should by sympathetic to, has in some ways set itself in opposition to the needs of another, in many cases even more vulnerable, group whose rights hang by the thinnest of threads. I think that “Not Dead Yet”, for instance, has to some extent become the PETA of the patient autonomy movement – disruptive, self-centered, and given more to displays of anger than cogent advocacy. At a time when autonomy and individual liberty in all its forms are under vicious assault from the right wing, it hardly helps to have one segment of the population at need trying to block another segment’s rights, especially when those rights are grounded on the same principle the first group needs to secure its own interests.

To be fair, the articile addresses this point insightfully:

In the May, 2003 New Mobility, Barry Corbet looked at that right-to-die argument for autonomy. “Disability rights are about autonomy and self-determination,” he quoted the late Drew Batavia as pointing out. “Why shouldn’t that freedom of choice extend to end-of-life decisions?” Batavia, a disabled man and one of the founders of the right-to-die group Autonomy, argued that people with disabilities should be given the choice to end their lives — with assistance, if need be.

But “the current state of institutionalized prejudice against people with disabilities turns that choice into no choice,” Corbet went on, explaining the reasons behind Not Dead Yet’s opposition to that idea, which he concluded makes a great deal of sense. “Because nondisabled people seem to fear disability more than death. Because doctors are fallible in diagnosing and treating depression and estimating life expectancy. Because the current rush to cut health-care costs conflicts with our need for lifelong care.” . . .

“Since virtually all people who request hastened death have old or new disabilities, we’re essential to the debate,” writes Corbet. “Death-with-dignity laws are about us.”

I am not convinced this justifies Not Dead Yet’s position, but the points made above are well taken.

Leaving aside the right-to-die question, there is a real issue here, and the onus is on liberals to acknowledge and address it. As I said, I don’t suspect most liberals would deny that disability rights are a form of civil rights, but I think it is probably fair to say that most liberals don’t think much about the issue until they are confronted with it. The complaint about non-accessible meeting rooms rings true: how often do most non-disabled persons even notice whether a given building or room is accessible? How often, in planning an event, do people specifically insist on accessible facilities unless they happen to know a disabled person is coming? And how often is that seen as an “extra effort” or an inconvenience, where refusing to patronize a racially-segregated facility, or one that discriminates against gays, would be reflexive? I suspect most people don’t pay much attention to the issue unless they are reminded, or have been personally sensitized to it.

Johnson’s article offers a sophisticated multi-origin analysis of the problem:

Coleman, who runs the Progress Center for Independent Living in suburban Chicago, says that when it comes to people living in their homes rather than institutions, liberals see the issue “as one of social services, government programs — not as a civil rights issue at all.” Liberal decision-makers in state legislatures and administrative branches of government “are clearly looking at these issues as social programs — without an understanding of the rights basis at the core of the issue.

“Our issues are seen as medical issues,” she adds.

“Neither the Left nor the Right sees disability as a rights issue,” agrees Not Dead Yet research analyst Steve Drake, who rather than “medical issues” uses the term “clinical issues” –“who gets to live where, who gets to get education, who gets to work where.” And folks turn to professionals instead of us to learn what disabled people “need,” he said.Bérubé is getting at something similar in a essay in the Spring, 2003 issue of Dissent when he writes that “our society’s representations of disability are intricately tied to, and sometimes the very basis for, our public policies for ‘administering’ disability.”

The Left hasn’t done the theoretical work needed to understand disablement, Russell says.

“The disability community is still not recognized as part of the project of diversity and multi-culturalism in American theater,” says Victoria Lewis, “in spite of the fact that the disability culture offers a radical critique of key democratic concepts such as autonomy, community, care-giving, and quality of life.” Lewis, who founded the Other Voices project at the Mark Taper Forum in Los Angeles, now teaches theater at University of Redlands. Her comment can be made of almost any field of endeavor.

One of the reasons leftists don’t “get it,” Chapman U. political science professor Art Blaser thinks, is that they “tend to prioritize inequalities and reason, ‘if I fight most of them isn’t that enough?'” For a long time, sexism wasn’t considered important to the Left, he says. Nor was homophobia. Things started to change when women leftists themselves began feeling gender inequality and gay leftists came out of the closet. ‘We’re not there yet,” he adds, echoing Russell’s point that the disability movement is not only not large enough yet but that leftists who have disabilities by and large do not seem to identify as disabled and thus do not force the Left to take on the issues. “The second wave of feminists came out of the Student Nonviolent Coordinating Committee and CORE, she points out, “and they drew explicit parallels to Black Power.”

“Leftists have the same problem everyone else has with new civil rights movements,” says philosophy professor Ron Amundson of the University of Hawaii. “They believe in the same rights and protections for ‘everyone’, but they’re not sure who ‘everyone’ includes. Thomas Jefferson didn’t include slaves in his ‘everyone,’ for example. . . .

For most liberals and progressives in general today, he says, there’s “an uncritical optimism about technology as the force for making a brilliant, egalitarian future. That means that you need to make deviants fit –or if they won’t, you use electroshock or other scientific methods to ‘help’ them. And if they refuse to be helped. there’s something wrong with them. Doing this means creating a state that doesn’t accept independent living.”

All of that seems likely, to varying degrees. And it locates the problem, as it should, with the liberal activists who haven’t “expanded their circle” widely enough yet. In the same way that white feminists had to recognize their obliviousness to people of color, or anti-war activists were called out for dismissing women’s issues, many liberals need to put “Disability” on the mental check-list of discrimination they maintain when analyzing and criticizing social institutions (and themselves). I am one of them, to a much larger degree than I like.

The last quote, above, is particularly interesting. For a long time – still today, in fact – “curing” disabilities was a quintessentially humanitarian, progressive act, and the seemingly-progressive nature of science reinforced this perspective. (I recall reading a quote from a hearing parent who wanted a cochlear implant for his deaf infant, to the effect that he couldn’t understand why anyone would object to such a thing – it was like a “Biblical miracle, making the deaf to hear”, and what could be wrong with that?) It requires a sea change in our understanding of what “health” is and what goals we properly have for ourselves and our use of science to accept the view of many disabled persons that “disability” is not something to be avoided or cured. (The word “disability” is problematic here, as many have recognized.) A fundamental tenet of disability activism is that disabled persons’ lives are just as valuable as those of non-disabled persons – a sentiment no liberal would reject. But along with that comes the view that life with a disability is no more to be denigrated than life without one – a view that many non-disabled liberals (who surely do not want to be disabled – nor should they) would find hard to understand. (And it becomes even trickier teasing out the question whether parents can legitimately choose to avoid children with disabilities, by abortion or pre-implantation genetic diagnosis, from the question whether being born with a disability is a bad thing.) It requires understanding that belief – one voiced by many people with disabilities – to see that scientific attempts to remove the disability condition from those who have it can be interpreted as an assault, rather than a benefit. Making that leap in perspective, I think, inevitably carries with it a surge of sympathy for other disability-rights concerns.

Johnson’s article provokes much thought. I don’t agree with all the sentiments it conveys, but I do with much of them. And I suspect the problem it identifies is real, and significant. The ball is in the court of we who claim to stand for empowerment to understand what that means for the disabled, as well as for other disenfranchised minorities.

10 Responses to “Progressive Obliviousness to Disability”

  1. Dan Says:

    As a fully-abled (?) person, the idea that a disability should not be prevented is absurd, and it sounds like sour grapes for the disabled to claim so. Clearly, fixing a disability involves changing defining characteristics of the disabled individual, so there’s some sense in eschewing that, but to not avoid or to even encourage misfeatures is at best extremely short-sighted and more likely morally objectionable.

    By the way, what happened to the term “handicapped”? It’s odd to me that now the term “disabled” (to be incapable of something) is preferred over “handicapped” (to be sufficiently able so as to overcome a significant obstacle). I’ve heard the complaint that “handicapped” replaced “cripple”, but then acquired the same negative connotations as “cripple” had had and thus was in turn discarded. That would suggest that the connotations had some real basis and will eventually attach to “disabled” and yet another term will be needed.

  2. Pejar Says:

    I’m afraid I have to agree with Dan that it seems bizarre to say there is something wrong with trying to cure disabilities. Obviously, no-one should be forced into cures but if we have a debilitating illness, we would expect people to want to cure it. Why is it different with disabilities?

    The major problem with making places disabled-friendly is that a lot of older buildings just cannot be changed that way without compromising the structure and / or spending incredible amounts of money. With other groups it is simply a question of preventing bans (at most, women’s toilets had to be added). With disabled people, major structural alterations may be needed.

    A progressive bookstore owner provides a ramp to a locked entrance and offers a doorbell; he is offended when local activists protest the segregated treatment.

    See this is the problem. This is not the same as requiring a different entrance for black people. This is doing one’s best to solve a problem. Taken to its logical conclusion that there must be no separation, this ideology would require braille in every book alongside text (because braille books would be too separate), people signing in the corner of every TV programme (because having the programs separate would be a violation) etc.

    I have every sympathy for disabled people and agree that efforts must be stepped up to give them the best chances possible. But to frame it in terms of them having rights to everything the fully abled can do seems troublesome. Cruel as it is, nature has dealt a blow. Society should do its best to temper the blow, but it cannot be blamed for every consequence of it.

  3. Stentor Says:

    people signing in the corner of every TV programme (because having the programs separate would be a violation)

    It’s called “closed captioning,” and most TV programs already have it.

  4. Dan Says:

    But that’s just the point. Closed captioning imposes almost zero cost to those who do not use it and a quite small cost to those who provide it. The cost-benefit analysis is obvious because the cost is miniscule. This is a Good Thing. Pejar is talking about the obviously absurd idea of imposing a significant cost (a chunk of screen real estate, some of the viewer’s attention, and a moderate portion of the broadcast bandwidth) on all non-users for the mere sake of sameness. This’d be a Bad Thing, since the moral obligation is equity, not equality. It seems pretty obvious that much of what the ADA requires is more of the ilk of Pejar’s suggestion, rather than closed captioning. (A building owner must install a ramp for wheel chairs rather than, say, allowing the handicapped to come in via the freight elevator.) Also, it appears to me that one can only fall under the delusion that disabilities “aren’t bad” once you’ve imposed the huge costs on the fully-abled so as to make the disabled have no additional cost compared to them. This smacks of communist authoritarianism.

  5. Brooklynite Says:

    Dan, I don’t think you’re right that the ramps vs. freight elevator distinction is a purely symbolic one — that the ramps are insisted on “for the mere sake of sameness.”

    If the freight elevator requires an operator, or someone with a key to unlock it, then a person in a wheelchair is going to be inconvenienced, at a bare minimum, by the wait. If the entrance to the freight elevator is an external one, then he or she may wind up waiting in the rain. If the person behind the counter can’t leave immediately to unlock the door, or can’t find a key, then he or she may wind up waiting in the rain for a long time.

    And it’s also worth noting that the ADA only requires those alterations to existing structures that are “readily achievable,” a term defined within the law as meaning “easily accomplishable and able to be carried out without much difficulty or expense.”

  6. Sufficient Scruples » Blog Archive » Disability: Care Without Cure Says:

    […] There was some head-squeezin’ taking place over my recent claim that many disabled persons believe “life with a disability is no more to be denigrated than life without one”. It’s just obvious to many people that having a “disability” makes your life objectively worse than otherwise, and presumably makes you objectively less happy than you would be without the disability. (A particularly stark example of this took place in an infamous encounter between utilitarian ethicist Peter Singer and disability activist Harriet McBryde Johnson, who uses a wheelchair, in which he insisted – against her objections – that having a “disability” was simply objectively worse than having some mere life difficulty such as being a victim of prejudice. I have always wondered at this in Singer, who, though controversial, is not usually unempathetic – at least, he feels chickens’ pain pretty intensely.) See the disabled as “the disabled” makes it very hard not to respond to them in a way that foregrounds both the disability (rather than the person) and the observer’s interpretation of its significance. […]

  7. Laura Williams Says:

    I must take exception to the statement that a person [or persons] with a disability are less “happy” than those persons without a disability. I for one, through active advocacy and support in the community am a decidedly better person after the disability than before. Would I have become the contributor without the disability? I cannot answer that fully – but my suspicion is that I may have continued my busy busy life that kept me busy [and happy] but was of no consequence in actual contribution to society. So I can honestly say I like the person I am today much better than the person I was pre-disability. I have absolutely redefined the value of life, the value of contribution, the value of ableness. I have met so many truly GREAT contributors to the disability community. I value them for what they have contributed – I do not devalue them for any ability they do not possess. In truth – all those abilities are so very fragile – as fragile as life. We should all be judged by what we accomplish with the abilities we posses, rather that dismissed as not normal. For you see we are as normal as all the great atheletes or all the masses of average abled. For all human life exists in one plane of normalcy, we are but one segment of the totality of normalcy. In fact the great atheletes are far rarer in quantity than those of us with missing abilities. So does that make us “more normal” than them? Of course not – no more than does our missing abilities.
    Thanks for listening….

  8. Cheryl Bergan Says:

    There’s a lot to debate in the above: Is access a civil right? And why if it costs a business owner money and they do something else to provide service? Should people with disabilities rejct or defend the “right to die” as the very epitome of choice? And I think there was something about voting in there–Gadzooks– each one of these could be a dissertation.

    Is access for people with disabilities a civil right? Access is THE civil right for all people. If you can’t get in– you can’t participate. You can’t vote. You can’t buy. You can’t be employed. Whether you are barred by a sign, by guys with billy clubs or by three steps leading to the entrance of a bank, if you can’t get in– you are not a part of the community. Going around back is not acceptable– because then your right to be there is less than the folks who come in the front door.

    Back about 15 years ago, there was a law that forced businesses to have fire sprinklers. There were thousands of laments from the business community– we’ll go broke– it will destroy historic buildings– the lamentations were long and endless. And guess what? The buildings were fitted with sprinklers. It’s been a long time since I’ve heard any complaint about fire sprinkler requirements– it’s simply the cost of doing business, everyone knows it and I haven’t heard of a huge army of fire sprinkler avoiders. If it costs money to provide fire sprinklers in the unlikely event of a fire, should we not be looking to provide access in the likely event that someone with a disability may want to use a business that is open to the public? That they may want to go eat at a restaurant with their sweetheart without having to go through an inevitably stinking freight elevator? It is because many people without disabilities do not believe that people with disabilities have actual lives– that people with disabilities might want to impress a girl with dinner and a movie– or might want to paint their face and cheer for some football team– or might want to support their community by shopping at a local store instead of WalMart–or go to a concert–or visit a legislator or any thousand other things in the community– it is because people without disabilities cannot imagine a different perspective where wheelchairs are as natural as breath– or where breath from a respirator is as natural as walking– and there is still that niggle supported by society and the medical model of providing services that people with disabilities would be better off dead.

    Of course physician-assisted suicide naturally follows– how much worth do we put on the lives of people with disabilities when there seems to be this great confusion about the worth of people with disabilities and their right to use businesses in the same manner as anyone else? And there is an emphasis on “dignity” that is defined as needing help going to the bathroom? And this culture that wants to shut people with disabilities up in institutions which both shut them up (literally and figuratively) and close them out? When Krevorkian can kill dozens of people with the authorities turning a blind eye? When people with disabilities have a two-thirds unemployment rate and are three times as likely as the general population to live in poverty? When they have to jump through hoops to get assistive technology or community services? When people with disabilities are valued and get what they need and health care systems are not driven by dollars, then we can re-visit Physician-Assited Suicide. I’m not thinking that will be anytime soon…

  9. Deborah Kaplan Says:

    This question is pretty complex. As a long-time disability activist, I’ve thought about these issues quite a bit. It’s difficult to separate out the idea that people would logically seek medical treatment for a medically-related limitation – from the idea that people with disabilities then shouldn’t exist. From a personal perspective, the starting place is learning (often from other disabled people) to be happy with me as I am. It’s difficult to live your life fully and happily if you wish you were different in a core way, especially when that wish is reinforced by the outside world over and over. Having a positive identity as a disabled person requires the ability to ignore, or not take seriously, all of the explicit and implicit messages that come at you that your life must be unhappy or unbearable.

    Related to that is the realization that your disability may be regarded as a medical condition, and that is how many people regard it, but it is also quite possible to understand disability as a mis-fit between the individual and the environment. This is the idea that disability is a social construct; we decide which limitations are disabilities and which are not. As an example, many people who wear eyeglasses have a fairly significant disability or limitation without the glasses. (I need reading glasses, and I’m fairly visually impaired without them in certain environments.) Yet, a person who wears glasses is not regarded as disabled. Why not? It’s purely a social construct. From my point of view, in a totally wheelchair accessible environment, how is a person who uses a wheelchair disabled? What is it that they can’t do? Walk, sure. But all of us choose to get from one place to another in vehicles. If my vehicle is a wheelchair, why is that different from a car? Different enough to set me apart from people who walk. One can argue the fine points of this explanation; but I offer it as an explanation of the way that many people with disabilities regard this question. I don’t regard my identity as medically based. So, I’m not going to put much mental energy in seeking a cure.

    And, most “cures” are not neutral. There are side effects, possibilities of unsuccessful surgeries, requirements for ongoing treatment or drugs, etc. So, there are usually trade-off’s to consider, and if my life is fine for me, why would I want to go back to the world of doctors, hospitals and loss of personal autonomy for an existence that can’t be exactly predicted? So for now, the answer is “no thanks” to the idea of a cure.

    Just a short note on the question of why liberals don’t “get it”. I think most of us in the disability activist community are by political pre-disposition liberal ourselves. It isn’t whether most liberals do or don’t get it, so much as the disappointment we feel when they don’t. We don’t expect conservatives to “get it”, so we’re not as affected when they don’t. (And surprised when they do.) We have higher expectations of liberals and progressives.

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