Bioethics, healthcare policy, and related issues.
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.
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