 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... and more. |
Why don't they 'get it'?
By Mary Johnson
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 was just the latest round of a recurring tune: activists say progressives and conservatives are equally dense when it comes to understanding, much less embracing, disability rights.
Liberals, in particular, came in for a drubbing. Whether called progressives, leftists, or liberals, these are folks who should understand and support disability rights issues and make them part of the liberal rights agenda, said almost everyone we talked to. But they don't.
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."
"What happened to the liberal clergy that supported the civil rights movement in the 60s?" asks Mainstream magazine website editor Bill Stothers. "You don't see them on ADAPT marches."
A month before the Schiavo fiasco, there was the Free Our People march. For two weeks, stalwarts with the movement's direct action arm, ADAPT (whose all-purpose acronym most recently has served to mean "American Disabled for Attendant Programs Today") marched from Philadelphia to Washington, DC to push for passage of the Medicaid Community-Based Attendant Services and Supports Act, or MiCassa.
"The left doesn't pay them much attention," Astra Taylor wrote, reporting on the march for The Nation's online edition. Taylor's sister Sunny, a wheelchair user, made the 144-mile trek; Astra joined on the march's last day to file her report. It did not seem, she wrote, that onlookers watching the group roll through the DC suburbs "saw the connection between these 200 wheeling radicals and their own lives."
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."
Russell, a longtime disability activist and author of Beyond Ramps: Disability at the End of the Social Contract, takes pains to point out that she is talking here specifically about "leftists." Although people usually use the terms "liberal," "leftist" and "progressive' interchangeably, there is distinction, she says. By "leftist," Russell means "anti-capitalist": "Liberals think capitalism is largely a beneficial thing needing but a few reforms to iron out the crinkles," she explains. "Lefties think capitalism is the problem." However, her comment that leftists "don't see basic underlying institutional relations at work when it comes to disablement" applies to progressives and liberals as well.
"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.
"Public employee unions all over the country have fought against -- and in many states have succeeded in stopping or slowing down -- any movement to close or downsize facilities that warehouse people with disabilities," says ADAPT's Bob Kafka, writing on ZNet.
Liberals "may understand that a ramp is needed or that Braille is appropriate; they might even think of it as a rights issue," says Diane Coleman. "But they say, 'the government should have taken care of that.' They see it as a government responsibility, but not really as basic civil rights. And that's about the best I can say in terms of the level of understanding . Once you get beyond the very simplistic access issues, we find a tremendous lack of understanding."
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.
"I was on the fringe of the anti-war movement in the 1960s, and the leftist men of that era were mostly male chauvinist pigs, just like feminists said we were." They needed to broaden their analysis of oppression to include women back then, he continues, and "leftists today need to broaden their concept of 'everyone' to include disabled people." This is "no more radical than broadening it to include women and non-white races." But, he adds, including women took lots of agitation from women themselves.
Historically, says Blaser, going back to the roots of the term "leftist" from where people sat in the early days of the French parliament, "parties on the left generally believed more in equality, science, community, cosmopolitanism, universalism, good human nature and the potential of government to improve the human condition." 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."
The progressive era in America politics paralleled the rise of the freak show, Lewis reminds us. "The two most frequent kinds of people presented as freaks were 'normal' non-Westerners, people of color, and 'abnormal' Westerners, disabled people."
She continues, "Cultural icon Alexander Graham Bell, touted for his dedication to the deaf, believed that sign language was evil and would result in a rise of depravity in the deaf people. Bell insisted that the deaf must be normalized by oral education and learn to speak."
In the socialist and communist Workers Theater Movement, Lewis adds, "the disabled figure is most vigorously employed as the victim of capitalist wars or inhumane factory practices, and is used to arouse pity and engender guilt."
Some would argue that while liberals don't understand the disability perspective on rights and access, they DO understand the disability rights take on "assisted suicide" -- they just don't agree with it.
Bérubé suggests that it's "a genuine philosophical and political disagreement about the value and meaning of autonomy." "There are some liberals who know perfectly well that persons with disabilities are no less worthy, as humans, than any other persons," he says, but "who support prenatal screening and euthanasia anyway, on the grounds that individuals' autonomy over such decisions must be respected, and that there is no transcendent moral value in (a) compelling people to bear children against their will or (b) compelling people to continue to live if it can reasonably be ascertained that they do not wish to do so."
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."
"The problem is that our desires are so malleable and manipulable," disability rights activist and author Harriet McBryde Johnson told Corbet. "You know how easy it is to internalize other people's expectations, how exhausting it can be to oppose them, especially when you're sick. What we confront usually isn't homicidal hate, it's that pervasive assumption that our lives are inherently bad. That attitude can wear us down to the point where we want to be killed."
"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."
"The word 'dignity' derives from the Latin for 'worthy': that which is deserving of social respect,' wrote John Kelly in an article for Ragged Edge. "But while it may look like it belongs to the individual, 'dignity' really comes from the shared judgments of other people. For there to be any general agreement on what dignity means, this must be so.
"Dignity is in this way just like its opposite, disgrace, which also comes from others' judgments," he writes. "Titles of existing and proposed assisted-suicide laws prominently display the word 'dignity' -- for example, Oregon's 'Death with Dignity Act.' To preserve dignity in such a situation, to stay worthy in the eyes of others, demands that autonomy and control be reclaimed by dying. And since dignity seems to carry courage in tow, escape from a humiliating circumstance gets characterized as a courageous act of the will. In fact, the only will on display is the social one."
"Why do we 'respect' the suicidal wishes of disabled people, yet treat the same wishes of nondisabled people as cries for help?" asks Corbet.
Activist Eleanor Smith made the same point in a letter to MS magazine over a decade ago: that a group like the National Organization for Women "rightly assumes that a gay teen suicide rate triple that of non-gay teens is an unacceptable result of homophobia, not a result of rational personal decisions" but that "NOW officially and actively supports the 'right to die' for old, ill, and disabled people."
"If suicide is such a great 'choice' then why not offer it to everyone -- including teens distraught about acne, middle aged ABs who've lost their job, women who've shown they aren't good at killing themselves (most women who attempt fail, most men who do so die), and of course those who are incarcerated?" asks Carol Cleigh. Asking this question "usually gets the lefties to thinking about who gets what 'choice' in our society and why," she says. "Then we can start discussing why it is discriminatory to offer this 'choice' only to members of one minority group -- us."
"Back in the early 1980s, when the ACLU was fighting for the so-called right to die for Elizabeth Bouvia, the 26-year-old woman with cerebral palsy who'd had a miscarriage, a marriage breakup and wanted a hospital to cooperate in starvation, the ACLU was also fighting to keep death-row inmate Gary Gilmore from halting his appeals," says Coleman. "They argued that he would be committing suicide, but that it would not be truly voluntary because he was affected by being in prison." She was "a card-carrying member of the ACLU in L.A. at the time," she says, but, frustrated that the ACLU would not see the parallels in the two situations, she eventually resigned.
"One problem with American leftists is that their ideology includes a dose of libertarian thought mixed in with their social conscience," says Amundson. "And they don't notice the difference between their social-conscious-based beliefs and their libertarian beliefs. They tend to be libertarian on things like drug use and sexual morality, on the theory that these crimes have no victims.
"When they start to recognize that social policies actually do have social consequences and victims (because drug addiction harms people, or certain kinds of sex are exploitative) they may start to reconsider, and their socially-conscious tendencies may allow them to accept social restrictions on exploitation.
"At the moment, leftists are libertarian on things like assisted suicide," he continues. "They don't notice it -- they think they're thinking 'progressively.' But they're only buying the childish 'you're not the boss of me' doctrine of libertarianism."
Coleman points out that few liberals have "taken their understanding of health-care issues and applied it" to the context of what she calls "legalized medical killing." Among progressive organizations working for healthcare reform, she says, "the first reaction they have is that assisted suicide and 'right to die' issues are a matter of personal choice. They've bought that rhetoric.
"These are people who know that the system is willing to kill for money; that's what they deal with every day in their advocacy work; but it takes a discussion, it takes connecting the dots for most of them to see why someone like me, someone severely disabled, might have a problem with legalized medical killing and might see it as not so terribly compassionate or progressive."
Disability rights leaders are fond of pointing out that disability rights appeals to both liberal and conservative strains in American government. That's the good way of looking at it. A different analysis, which Russell offers, is that the conservative rhetoric used by disability rights leaders has distanced leftists from the movement, from seeing it as one with other efforts to end oppression.
"The disability rights movement's history is clouded by right-wing ideology and rhetoric that doesn't appeal to the left," says Russell. "In the name of 'independence,'" some disability rights leaders have "attacked the welfare state" -- that is, the system of providing disability benefits -- "as creating dependency for disabled people."
Leftists, she says, believe society should provide certain benefits to every human without obligation. Disability movement leaders in the 1980s were more interested in self-reliance and individualism, she says. "The disability rights movement was big on government not interfering in disabled people's lives," in "drawing attention to the high public cost of dependence on disability benefits" and arguing for the Americans with Disabilities Act "in terms of cost effectiveness.
"Those at the top of the movement hierarchy adhered to the line of personal responsibility, independence, rugged individualism -- but without a clue of what that meant under capitalism," says Russell. "Their rhetoric of 'independence' was void of analysis of capitalism, the market, labor relations, perpetual unemployment" -- all issues she deals with in her book.
Drake says neither the left nor the right truly claims disability issues as their own. Both "are really just invested in their broader culture war -- with neither side seeing us as part of the culture they're defending. We're simply collateral damage.
"Liberals say, 'we support the social programs that you depend on, that you agree with -- and because we do that, we should have your unqualified support, even when we support every 'better dead than disabled' cause that comes along.' Folks on the right say, 'Look, we're out there on the protest line in Florida; we're fighting for the lives of people like Terri Schiavo, so we should get your unqualified support, no matter how much we cut the social programs you need to function and even survive.'"
Maybe the reason progressives hold the views they do about the right to die, muses Amundson, is "because it's so scary for a non-disabled person, on the left or right, to imagine themselves being disabled."
Bérubé wonders much the same thing about liberals' reluctance to get behind the issues of access and disability rights in general. He says that precisely because a nondisabled person can become disabled, they are in denial. And "there's an odd thing about being in denial, you know," he says. "When you're told you're in denial, you tend to deny it."
Those we talked to told us how difficult it was -- "lonely" was how more than one described it -- to push to get liberals to take up disability rights causes.
"It's kinda like bein' the last kid picked for the kickball team," wrote MaryFrances Platt. "Sometimes you get to be on the team, but everyone knows you're not really welcome. One can be happy about being on the team, but there's always that mortification at being last."
When she works on healthcare issues with progressives, says Coleman, "some seem to eventually 'get it' -- but most don't. "I don't spend a lot of time talking with them about it because it's uncomfortable," she says. " I don't feel excluded or ousted from these groups; I continue to have my involvement welcomed." But most of them see her leadership of Not Dead Yet as peripheral, she says; that "while they understand that I've got this 'other issue' going on that's central part of my work, they don't see it as important to the discussions we're having about managed care and rationing and distribution of funds" that are part of their work. When she's tried to get them to "connect the dots between right-to-die initiatives and the desire to contain costs, things often get a little bit tense."
Jones says disability activists feel the loneliness every time they attend a meeting and have to press for access. "It's the hypocrisy that really gets me. They want to say they're 'inclusive,' but if they truly were inclusive, they'd make sure their meeting was accessible. Why is it that they always forget access? They say they don't really mean not to include you, but the truth is they don't set up an environment that makes it possible for us to participate. They don't really see us as partners. "
"In the 1950s, blacks had their churches. Women had each other as well," she continues. "But people with disabilities are isolated. You are likely the only person in your house, in your family, with a disability." In most families, even today, there's an aura of shame about being disabled, she says; a subtle or not-so-subtle message that "you have to pull yourself up by your bootstraps, that you have to succeed by and large by yourself." She compares this to the isolation and shame a gay or lesbian often felt before the growth of the gay rights movement.
And, she continues, even within families that are "pretty progressive politically" and who would never see themselves as oppressive, there is an expectation that the family member's disability should be minimized; that the child should work to become "normal." In this way, even for most families who have disabled members, disability issues are downplayed as a broader political cause. She points out the almost unquestioning acceptance in the progressive community for what's called "eugenic abortion," the "I don't want a disabled child so I'll have an abortion" approach to thinking about disability.
"Maybe disability rights activists could do a 'better job' of making the case for disability rights, but at some point I have to think it's incumbent upon liberals to educate themselves," says Bérubé.
"I'm frankly surprised that more liberals don't latch onto the idea of 'reasonable accommodation' as the standard for all civil rights law," he continues. "Far from marginalizing the ADA as a law pertaining only to 'special' populations who need 'special' services, liberals could very well put the ADA front and center as the very model for a new paradigm in thinking about civil rights and citizenship."
Liberals should be offering "compelling defenses and extensions of the ideal of reasonable accommodation," he continues. "In the built environment, we need a new generation of planners and architects familiar with universal design and capable of explaining to nondisabled liberals how 'access' is truly is a universal issue.
"And is there any better place than the disability-rights platform from which to argue for the absolute necessity of universal health care? Here, too, liberals should be putting disability front and center."
"I hope that eventually leftists will become aware of the exploitation" involved in both assisted suicide and restrictive government programs like nursing homes, says Amundson.
Writer Josie Byzek, referring to Peter Singer's utilitarian philosophy which holds that parents should have the right to end the lives of their disabled newborn, adds, "True utilitarianism ought to result in real healthcare, real civil rights, not some sort of glorified eugenics."
Disability rights issues could redefine the women's movement, says feminist Ingrid Tischer. "The battles are huge. They include access to affordable healthcare, long-term community-based care and living wages for the workers (a largely female population) who provide personal assistance." And, she adds, the women's movement's progress is doomed if it fails to include women with disabilities." She wants" women who generally 'get it' to get over their tizzy about what-if-it-happened-to-me. Start listening to women and men with disabilities."
"Liberals -- and progressives, as I'd describe myself," saysBérubé, "have lost so much ground and so much public legitimacy over the past 30 years that it's quite clear we need new ways of thinking about the public sector and the common good. People need to begin to "read liberal theories of social justice in terms of disability issues -- putting the perspectives of people with disabilities front and center in a second wave of civil rights activism."
"To really 'get' disability politics means also to be a leftist," says Blaser, "to have a radical belief in human equality globally, across gender, ethnicity, sexuality -- and disability."
Posted Jan. 26, 2004.
Mary Johnson edits Ragged Edge.
Readers respond...
I think a big reason why the general public just does not "get it" as far as disability rights being a civil rights issues is the lack of anything resembling an organized effort on our part. We lack strong national organizations; we have no state and local organizations. If there was a Supreme Court case that was potentially going to have a strong negative impact on the rights of African Americans you would see tens of thousands of people in Washington demonstrating in front of the Supreme Court. How many people with disabilities showed up to demonstrate? If the Supreme Court had gutted the 1964 Civil Rights Act we would see hundreds of thousands in Washington and tens of thousands in cities across the country demonstrating and demanding that Congress take action. How many people have shown up at demonstrations demanding that Congress pass an ADA Restoration Act?
Civil rights movements are just that, movements. Masses of people representing oppressed minorities demonstrating and demanding equal rights. Were are the millions of people with disabilities gathering to demand our rights? When a child was being returned to Cuba against the wishes of the Cuban American community thousands of people demonstrated in Miami and in Washington. They did not prevail but they sure made sure that they were heard. Where are the masses of people with disabilities making sure that our voices cannot be ignored. We only have the ADA because members of Congress cared more about our rights than the vast majority of people with disabilities seem to care. The number of activists who worked with Congress was a rather small number and we were not supported by tens of thousands gathering outside of the Capital pushing for the passage of our civil rights law. Do you remember the television coverage of the masses of people in Washington pushing for the passage of civil rights laws in the 60's. Do you remember the "Million Man March" of just a few years ago that did not result in a million men marching in Washington but that had tens of thousands more people than any demonstration for disability rights?
We, the community of people with disabilities, don't even care enough about our civil rights to enforce the rights that the Supreme Court has yet to take away. How many people reading this email have ever taking action to enforce their rights under the ADA. Every time a store owner replies to my complaints about inaccessibility with the comment that no one before has ever complained I wonder if I am the first person with a disability to ever enter that place of business.
I watched a 900,000 square foot shopping mall open in my neighborhood in October with so many ADA violations that it took me 10 typed pages to detail all of the architectural barriers. I have waited through October, November, December, and January for some individual who is disabled to want to do something about this blatant violation of our civil right to equal access. I have seen dozens of people using wheelchairs in that mall. I have seen many people using canes, crutches, and walkers in that mall. I have seen a number of people who are blind in that mall. Not one person has done anything to enforce the civil rights that have been handed to us. When I spoke to the owners of this mall, something I typically do before I file a lawsuit, I was told that I am the only person who has complained. How is it that in a mall with 3,900 parking spaces and only 14 parking spaces for people with disabilities, nobody has complained? How is it that in a mall with several food services facilities that provide no wheelchair accessible seating, nobody has complained? How is it that in a mall with 6 large restrooms none of which has a toilet stall with transfer space next to the toilet for wheelchair users, nobody has complained?
The fact that society doesn't see our rights as civil rights is our fault, not the fault of society or the public in general. I have gone to celebrations of the anniversary of the ADA to find less than 20 people in attendance. I can go to a Holocaust Memorial on Miami Beach and find thousands of people there, including hundreds of people with disabilities, but almost nobody shows up from the community of people with disabilities to support our rights. During the Vietnam War the term "invisible majority" was coined to speak of the majority of the public who were not out in the streets demonstrating against the war. They were the unheard of masses. We are the largest minority group in the United States but we are the invisible minority.
Frederick A. Shotz, Fort Lauderdale
We're experiencing a phenomenon similar to what happened in the Gay community in the early 50s with the founding of the Mattachine Society. Its first two leaders, Harry Hay and Dale Jennings, were Marxists. They used Marxist analysis to recognize Gays as being an oppressed minority and did what communists like to do -- they organized. The Society became far more successful than either of the founders expected and drew a huge number of people from the LA area. Few of the new members were radical. The conservatism of the new members lead to the ousting of Hay and Jennings in one of the waves of Red Scare. A good book about what happened in the post-war era for Gays and Lesbians is Sexual Politics, Sexual Communities by John D'Emilio.
We're like the Society. Many of us who started in the Disability Movement in the 70s came out of the civil rights and anti-war movements. I know for myself that it didn't take long once I was exposed to disability rights to get it and become committed. What we had and still have is so valuable and compelling that it brings in more conservative crips. Their presence contributes to this not being a liberal issue. Like Gays and Lesbians, with time we should be able to get it on the liberal/progressive agenda. The African American civil rights movement goes back before Marcus Garvey at the turn of the century. These things don't happen quickly.
Anthony Tusler, Cotati, CA
I don't think the feelings we have are unique to our group. African Americans, gays, women for that matter, have all had issues with progressives talking the talk, but not walking the walk, so to speak. Another issue is that including us often costs money or inconvenience, whereas other minority groups can just "come as they are." This has often been a difficult conundrum for groups with small struggling budgets.
Then there is the difficulty our community has with participatory politics...we often don't "get it" either. This may be from a lack of experience, or that we are so used to being victimized that we look for it in every situation where compromises...or adherence to principled positions are called for in left coalition building.
None of this excuses the often blatant lack of interest or inclusion that many of us have encountered in our "liberal" circles, but it isn't just a one-way problem.
Alan Toy, Los Angeles
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