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PAN Discussion Group Wednesday April 30th 2008

Subject: Disability - How much allowance for emotional, physical in society?”

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Location:  Logan Square

  

 

Time: 7pm to 10pm - ish

 

Bring drinks and snacks to share 

 

General:

The articles are the basis for the discussion and reading them helps give us some common ground and focus for the discussion, especially where we would otherwise be ignorant of the issues. The discussions are not intended as debates or arguments, rather they should be a chance to explore ideas and issues in a constructive forum. Feel free to bring along other stuff you've read on this, related subjects or on topics, especially topical ones, that the group might be interested in for future meetings.

 GROUND RULES:

* Temper the urge to speak with the discipline to listen and leave space for others

* Balance the desire to teach with a passion to learn

* Hear what is said and listen for what is meant

* Marry your certainties with others' possibilities

* Reserve judgment until you can claim the understanding we seek

  

Any problems let me know...

 

The Articles:

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First a criticism of liberals attitudes to disability ……….

http://www.raggededgemagazine.com/departments/closerlook/000947.html

Liberals and disability rights: 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."

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."

Liberals and disability rights, Part 2

 

"It wasn't just one person carrying me up the stairs. It would take one person behind me and one person in front, and many times another person telling the person behind me when to step up." Tennessee court reporter Beverly Jones is a plaintiff in the suit which the Supreme Court heard on January 13. She, George Lane and four others sued their state under the Americans with Disabilities Act because they couldn't get into their courthouse -- unless they were carried.

"Year after year," Jones said, "the same situation would occur." She simply got tired, she said, of being on "public display." The Supreme Court Five seemed singularly unimpressed with her attorney's argument, that the inability to get into a courthouse without asking to be carried involved "fundamental rights of citizenship." What was wrong with having to be carried up the steps, Chief Justice Rehnquist asked. That didn't mean a person was being denied anything, he said.

The whole debate irritated Justice Antonin Scalia: "It depends on what's meant by discrimination," he insisted. Being "turned away because there is no elevator is not a constitutional violation.

"An inaccessible voting place means nothing at all," he went on. "It merely means the state didn't go out of its way to accommodate the handicapped." States "may not have made it easy for handicaps [sic] to vote," he went on, but that was no reason for Congress to subject states to lawsuits. Nor was it a constitutional violation to deny public education to disabled children, he added in an aside.

As outraged as liberals may be by the states' rights mantra of the current Court, we might privately agree with Scalia and Rehnquist that the denials of justice disabled people say they face are not on a par with the real denials of equal rights African Americans faced. We may concede that disabled people's lives are difficult, says leftist Marta Russell, author of Beyond Ramps: Disability at the End of the Social Contract, but many of us don't believe "disability is an oppression that belongs on a theoretical par with race, gender or class." We "don't see basic underlying institutional relations at work when it comes to disablement."

Progressives have marched for civil rights, women's rights. We've taken up gay, lesbian and transgender issues. We speak out to oppose the death penalty. We publicly denounce rollbacks in environmental protections. But disability rights remains on the fringes of our consciousness. We are "oddly reluctant to see disability rights as part of a program of egalitarian civil rights," says Michael Bérubé, author of the 1996 bestseller Life As We Know it, about raising his disabled son Jamie. He says it's "weird" that liberals "see disability as a simple question of deficiency rather than stigma, and thus somehow different from race and gender."

Perhaps the disability rights movement is still too small, says Russell. Leftists who have disabilities do not force their ideological peers to take on the issues. Or perhaps we believe that disability rights are laudable but cost more than society can afford; that they provide treatment. to a tiny group at the expense of the rest of us. These arguments were made by right-wing interests throughout the 90s and have formed most of what has passed for public discussion about disability rights. The majority on the Supreme Court seem to believe them.

Our wrists hurt from typing on flat keyboards; we put the TV on "mute" when it gets too noisy in the bar, so we can follow the action by reading the captions; we slip into the "handicap stall" at the airport because it's big enough to accommodate us and our rollbag and computer bag safely. Yet we don't protest against the conventional wisdom that says the disabled cause problems by wanting "special treatment' at work for repetitive stress injuries; or by suing for accessible public restrooms, or by pressing for more television captioning.

Perhaps we're in denial, suggests Bérubé, for sooner or later, it's likely either we, or someone in our family, will find ourselves thought of as "disabled" in some situation or another. We will encounter stigma. We'll be excluded, shut out by a barrier that is illegal under disability rights law but exists because the law's never enforced.

Sooner or later, we will likely need some accommodation. Whether the accommodation is considered something "special" "for the handicapped" or something entirely normal depends mostly on whether society considers the item something for everyone -- like electric garage-door openers -- or "for the handicapped" -- like a house with a ramp.

Rehnquist walks around the courtroom during oral arguments because his bad back hurts, but he does not see this as an accommodation he is able to make to his disability because he is, after all, a Chief Justice. He does not consider that someone with a bad back who can't sit at a desk all day without pain might have a right as well to an accommodation-such as a different chair.

"Though we are conditioned to think otherwise, human beings do not really exist in two sharply distinct groups of 'people with disabilities' and 'people without disabilities,'" said a 1985 U.S. Commission on Civil Rights report, Accommodating the Spectrum of Individual Abilities. Disability is "a natural part of the human condition resulting from that spectrum -- and will touch most of us at one time or another in our lives." That report paved the way to the creation of the Americans with Disabilities Act. The law was intended to present a set of new ideas for people -- that equality means, in fact, that sometimes people have to be treated differently, given different accommodations, in order to achieve equal rights. The real goal of the disability rights movement in the U.S. is to provide equal opportunities for all Americans -- not to identify individuals who are entitled to some kind of special treatment.

But we are conditioned to think in terms of "us," normal folks, and "them" the disabled. We are taught that what needs to be done for "the disabled" is to help them get themselves "fixed" -- through medical intervention, or, if they can't be cured, then to help them adjust, as Ruth O'Brien points out in her book Crippled Justice. This medical-model view prevents the disability rights vision from taking hold. And as long as people do not understand the disability rights vision, they do not try very hard to understand the morality of access and accommodation, either.

No large grocery or hotel chain, no home-and-garden supply center would consider designing an entrance without automatic doors. They are standard in hotels and discount stores. Not, of course, for the people who literally can not open doors by themselves-such people are "the disabled"-them, not us. Hotel, grocery and building supply store operators fight regulations that require they accommodate "the disabled." Automatic doors that go in without complains are meant for us, the fit, the nondisabled, to ensure that we will continue to shop at the grocery or building supply center; to make it easy for us to get our grocery carts out, our lumber dollies to our truck loaded with Sheetrock for the weekend project. So the bellhops can get the luggage in and out of the hotel easily. When an accommodation is for "them," it is resisted; when it is for "us," however, it is seen as a design improvement.

Is it better for society to carve off "them," labeling people as "disabled" -- in order to certify them for special benefits or to tell them they are not able to work in our factories, as the Supreme Court Justices seem to want to do -- or better to see them as, simply, part of us? To take the latter view requires that we go beyond the liberal directives of merely including the "less fortunate" in our society, for that is the charity model.

The disability rights model takes a different direction, offering a way of ensuring that we ourselves will remain included in our families, our neighborhoods, our communities, when we become one of those "less fortunate" persons by acquiring ALS, having a stroke or bearing a child with a disability.

We should view disability rights in the same way we view the push for environmental regulation in order to protect our biosphere, our plants and animals, and our own ecological futures. Disability rights is more akin to environmental rights than anything else.We fight logging in the Amazon rain forest not just to preserve the diversity there, but to stabilize the world climate for all of us. We fight for people in nursing homes to have the option of living in the community, because winning that battle will insure that we too will have that option when we need it.

We should make the drive for access our own, never holding a meeting, scheduling a concert, setting up an office or store in an inaccessible building. Besides being illegal, it's immoral. Inaccessible courthouses shouldn't be just George Lane's and Beverly Jones's problem; they should be our problem -- a public problem. We should never create or approve an inaccessible website; accessible websites are easy to create; they work for everyone. Let's pass local laws requiring basic "visitability" access in all new homes.

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." Winning these battles would help both disabled people and women.

"I hope that eventually leftists will become aware of the exploitation involved in restrictive government programs like nursing homes," says the University of Hawaii's Ron Amundson. Medicaid, by law, pays for care only in nursing homes -- even when people want to stay at home and get care, and even when that's cheaper: that's because nursing home operators get Medicaid dollars for every "bed" they fill. Their lobby blocks any change in Medicaid law.

"Assisted suicide and 'right to die' issues are a matter of personal choice" -- that's the initial reaction of groups working for healthcare reform, says Diane Coleman.  Coleman heads Not Dead Yet, a national organization that fights against legalizing assisted suicide  "Why do we 'respect' the suicidal wishes of disabled people, yet treat the same wishes of nondisabled people as cries for help?" asks New Mobility magazine's Barry Corbet. "What we confront usually isn't homicidal hate, it's that pervasive assumption that our lives are inherently bad," says writer  Harriet McBryde Johnson. "That attitude can wear us down to the point where we want to be killed." "It takes connecting the dots for most progressives to see why someone like me, someone severely disabled, might have a problem with the 'right to die' and might see it as not so terribly compassionate or progressive," says Coleman.

And Michael Bérubé says, "I'm frankly surprised that more liberals don't latch onto the idea of 'reasonable accommodation' as the standard for all civil rights law."  The Americans with Disabilities Act revived "disparate impact" theory, he points out (lawsuits over employment practices that have a disparate impact on women or minorities -- and thus, said plaintiffs, violated the Civil Rights Act -- had been losing in the Berger and Rehnquist Courts).  But the ADA goes even further: it "requires employers to make 'reasonable accommodation' for all employees, thus giving them a bargaining power that they would not otherwise have in an 'at will' employment system -- and indeed more bargaining power even than many unionized employees have. It is the only civil rights law that imposes positive obligations on employers."

Liberals "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," he continues.  He suggests "putting the perspectives of people with disabilities front and center in a second wave of civil rights activism."

It's a kind of personal investment strategy: we press for the disability rights vision to be realized in our communities, in order to ensure that the components of an accessible society -- accommodation, personal in-home assistance, houses we can get in and out of easily, public buildings with automatic doors and no steps, usable websites, captioned television programs --  are there not merely for "the disabled" but for us when we come to need them.  As does protecting the natural environment, creating an accessible society helps all of us in the long run, erasing the us-vs.-them zero-sum mentality that has propped up the case against disability rights.

So what is a person worth if they can’t work …..?

http://www.raggededgemagazine.com/departments/closerlook/001095.html

The Stigma of Not Working  by Nancy Foley.

A man is a worker. If he is not that he is nothing. -- Joseph Conrad

Not everyone can work. This will be true no matter how hard we push employers to make "accommodations." It will be true no matter what types of adaptive equipment we invent. After trying so hard and losing so much, it is frustrating to encounter people who suspect that we really could work full time.

 

In the fall newsletter of the American Association of People with Disabilities, President and CEO Andrew J. Imparato endorsed "a sustained social marketing campaign aimed at increasing society's expectations about the capacity of people with significant disabilities to work and otherwise participate in the mainstream." He also wrote, "If we can build stronger expectations that disability need not equate to retirement and a lifetime of subsistence-level benefits, we can improve the motivation of more working-age people with significant disabilities to participate in the workforce. At the same time, we can have an impact on the key 'influencers' in the lives of adults with disabilities so they are not allowing themselves to reinforce low expectations that many disabled people may have about their employment possibilities." The newsletter reports that the idea for this campaign came from Mark Bagshaw, a manager in IBM's global Accessibility Center.

 

I run an advocacy organization for injured workers, and I joined AAPD to learn from the broader disability community. Before I criticize this point of view, I must try to understand it. Some people with disabilities (particularly those with visible disabilities) have been denied employment opportunities because society underestimates their abilities. They are angry when others try to help them with tasks they can do themselves. They want the world to know how capable they are.

Many of us fall into another category. We suffer from invisible injuries, such as chronic pain, or have poorly understood diagnoses, like chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivity. Nondisabled people do not believe us when we say we cannot work. They think we are lazy. The last thing we need is a marketing campaign that stigmatizes us further.

I have been interviewing injured workers for a book about the Massachusetts workers compensation system. Our stories are so similar. We are people who loved our jobs and tried hard to hold onto them. Losing our careers was among the greatest disappointments of our lives.

I continued to work in pain for years as a newspaper reporter and copy editor until I could not make it through the day. After going out of work, I still thought I would recover and return. When that did not happen, I spent thousands of dollars to retrain to be a schoolteacher. A car accident left me in more pain, however, and when the time came to student teach, I lasted only three weeks. The college had been very accommodating, allowing me to student-teach half-days, but I still could not do it.

After trying so hard and losing so much, it is frustrating to encounter people who suspect that we really could work full time. Some people mean well. I have had friends suggest I become a lawyer or run for elected office. They intend a compliment, not understanding the difference between mental and physical ability.

When I try to explain, they look confused and mutter about "accommodations." The push for reasonable accommodations has left the impression that every barrier to full-time employment can be removed. Furthermore, we live in a society that makes it difficult to say, "I can't." We have been taught that we can do anything if we try hard enough.

Do we really need a campaign to encourage family members to push people with disabilities to work? Imagine how awful that is for the individual who cannot meet these expectations. I know one woman whose husband reminds her frequently that when they married he had expected both of them to work. Insensitive comments from family, friends and strangers hurt. When these attitudes are shared by judges who decide workers compensation or Social Security disability cases, our survival is at stake. As we lose our homes, deplete our savings, file bankruptcy and consider suicide, the slogan, "People with disabilities have lots of abilities," has little meaning. We need help.

There are valid reasons why some people are likely never to be part of the economic mainstream. These include chronic pain conditions so severe that completing daily household tasks is difficult. Some injured workers do not come to our monthly meetings because driving and sitting for two hours would be too painful.

Yet, during the years that I have been advocating for injured workers, I have learned that many people do not understand how anyone can be incapable of working. When we were interviewing to hire another advocate for injured workers, one candidate said that he would challenge anyone who claimed to be unable to work. "It's probably psychological. They are too depressed to get out of bed," he said.

A guest speaker at one of our meetings, a lawyer offering financial advice on how to avoid losing our houses, said, "Some of you might have to make some tough choices. You might have to go back to work."

A vocational rehabilitation counselor told us that the alternative to retraining is "sitting on the couch," and another reminded us that the first question people often ask each other is, "What do you do?" Imagine how embarrassed you will feel if you have no answer, he said.

Most nondisabled people equate what they do with who they are. They are proud of their professional accomplishments. Many injured workers do feel a loss of identity initially. With time, we realize that we still have value apart from our professions. Having to figure out how to survive is a far greater achievement than any professional accomplishment.

Chronic illness can also give us a new perspective. Before my chronic health problems, I was focused on status and material success. I am closer now to friends than I was when I was able-bodied.

Many injured workers interpret their disability as having a reason and a purpose. One woman told me that being out of work allowed her to help her mother who was dying of cancer. Another said it allowed her to care for her sick husband.

Clearly, we can "contribute" in ways other than work. People with disabilities share something in common with homemakers. A homemaker may feel that she is making an important contribution and living a full life, while others regard her as the lowest of the low because she is not part of the paid labor force.

The last thing we need is a marketing campaign that stigmatizes us further. Let's be honest: employment is not the only means of improving the economic status of people with disabilities.

Often, this push to employment is presented as compassion, a desire to save us from poverty. Living on "subsistence-level benefits" is not great, but it is better than the year I spent with no income.

Furthermore, living on disability benefits (plus income from part-time work) allows me to live without excruciating pain. I am never without some pain, but I can adjust my life to my body's limits. My fight to get disability benefits was largely a fight for the right not to be in terrible pain. Although I am living on much less money than when I worked full-time, I am also living with much less pain.

We make a choice as a society to give people with disabilities only subsistence-level benefits. We could give them more money. I know this would raise concern of providing an incentive not to work, but let's be honest when we discuss the issue. Employment is not the only means of improving the economic status of people with disabilities.

Of course, I favor any attempt to break down barriers to employment. We also need to make the public understand that there are indeed circumstances where not working is appropriate and justified.

Nancy Foley lives in West Springfield, Massachusetts, and is the director of the Alliance for Injured Workers, a project of the Western Massachusetts Coalition for Occupational Safety and Health. Her email is nancywrote@aol.com.

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ADHD is associated with significant costs for both those treated and untreated for the condition, which underscores its considerable burden in the US. Estimates here of the costs of treating children with ADHD are consistent with the literature.^[40,42] The contribution of our research is to also include the healthcare costs of adults with ADHD, as well as the healthcare costs of family members, and the work loss costs associated with ADHD. Based upon this definition, the total cost associated with ADHD in the US in 2000 was estimated at $31.6 billion.

Of the total costs, persons with ADHD incurred $16.3 billion (52%). While 10% of this $16.3 billion was directly related to ADHD treatment, a substantial portion (nearly 75%) was attributable to the excess costs of treating other medical conditions. These excess costs were likely associated with the treatment of conditions more common among ADHD patients than their matched controls (e.g., anxiety disorder, depression).^[41] The result here is consistent with other administrative data analysis findings regarding the prevalence of co-morbidities among persons with ADHD, as well as the higher rates of sickness absence among employed adults with ADHD than their controls.^[31]

The current study estimated that 16% of the $16.3 billion cost estimate for persons with ADHD was attributable to work loss costs. However, this result likely underestimates the workplace burden of ADHD because it omits costs associated with reduced productivity.^[62] Moreover, the work loss estimates reported here also are low relative to those based on analysis of self reported NCS-R data that include short-term absenteeism as well as presenteeism costs.^[43] Recent research by Biederman et al .,^[63] considers lost household income, based on a telephone survey of persons who reported a diagnosis of ADHD, also suggests that our work loss estimates may be low.

Family members of persons with ADHD incurred the remaining 48% of the $31.6 billion costs associated with ADHD. In particular, adult family members experienced substantial excess healthcare and work loss costs, in part as a result of caring for a family member with ADHD. These costs were likely associated with higher than average rates of conduct, mood, and anxiety disorders among the family members of people with ADHD, as well as resultant incremental work absence. However, because persons with ADHD may have a family member with undiagnosed ADHD, some of the family costs estimated here may be more appropriately attributable to the cost of persons with ADHD.

While these first estimates of the cost of ADHD to the nation are suggestive of its substantial economic burden, future research needs to refine and build on this analysis. Selecting a sample of patients that had a single claim with an ADHD diagnosis is very broad, although this ICD-9 strategy is consistent with other research.^[64,65] This approach may have included more patients than those with true ADHD, since some may be rule-out diagnoses; however, an opposing tendency was also present since some persons with ADHD likely were misdiagnosed with another or no condition. A related clinical point is the uncertainty about the extent to which an aggregation of costs from non-ADHD conditions is actually related to ADHD itself, as well as uncertainty in allocating these costs to family members. These uncertainties derive from several sources, including the fact that ADHD may not itself be the cause of excess costs. Family units with widespread mental health problems may experience a host of related conditions, any of which can result in additional healthcare treatment costs. Similarly, undiag nosed ADHD may result in misallocation of costs to family members. Children or adults with ADHD may have other family members who suffer from the condition unknowingly. As a result, the excess costs of these family members are not properly attributed to ADHD. One additional reason for uncertainty is the use of claims data that inherently contain ambiguities in the coding of diagnoses, as well as the role of related co-morbidities. Future research should address these issues particularly in the context of a model to control for other related co-morbidities. Similarly, since these results are based on data from a single company for the period 1996-1998 the analysis may not be generalizable and should be validated with more representative, current data.

Additional societal burdens imposed by ADHD were not included here. For example, students with ADHD impose a burden on the school system as they may require customized lesson plans. Moreover, ADHD is also associated with a higher likelihood of delinquent behavior, adding to the costs of law enforcement and social service systems.^[66,67] ADHD is also likely to negatively impact the earnings of adults with the condition. Children with ADHD may achieve less academic success and have more adjustment problems as they age when compared with other young adults.^[68,69] Research regarding other mental health conditions, including those associated with ADHD, has found similar results.^[70]

Conclusion

More on less obvious disability ..

On the Job, Learning Disabilities Can Often Hide in Plain Sight By EILENE ZIMMERMAN  December 17, 2006

When Donna Flagg was growing up in suburban New Jersey, she struggled through reading and math in school and had trouble following directions. It was not until she took a college course from an instructor who was dyslexic — and who sensed that Ms. Flagg might also have a learning disability — that she discovered she had a form of dyslexia. The disability affects her brain’s ability to process what her eyes see.

 

“If I could be tested verbally, or if we could talk about the chapters I’d read, I performed well,” said Ms. Flagg, 42. “If I can put a sound to something, I’m fine. But if I read something only with my eyes, it doesn’t sufficiently register.”

 

When she got her first job as a sales representative for Chanel in Manhattan in the late 1980s, Ms. Flagg kept quiet about her disability. She phoned her father frequently for help with sales-related math and closed the office door to talk out loud.

Her decision to work around, rather than reveal, her disability is common. Lynda Price, an associate professor of special education at Temple University, estimates that as many as one in 10 adults may have a learning disability and that the vast majority conceals it from workplace supervisors. “They are afraid their co-workers will think they are mentally retarded or that their employer will fire them,” she said.

 

In May, Ms. Price and a colleague, Paul Gerber, a professor of education at Virginia Commonwealth University, completed a two-year study of adults with learning disabilities. The study, financed by the Learning Disabilities Association of America, involved 70 adults throughout the country. The results showed that 90 percent had not heard of the Americans With Disabilities Act and did not know it protected them from workplace discrimination. Ms. Price said that even when the protections of the A.D.A. were explained to study subjects “most said they wouldn’t use it anyway.”

 

It took Ms. Flagg nine years to disclose her disability to her boss, the same one she had at Chanel, whom she followed to several other companies. A few years later she left to start a human resources training firm, the Krysalis Group, in New York.Ms. Flagg’s decision to tell her boss about her learning disability is unusual. “The majority of the adults in our study said they would absolutely never talk about their disability at work, and a quarter of them were in management,” Ms. Price said.Learning disabilities include dyslexia, which affects language processing; dyscalculia, which affects math calculations; and dysgraphia, which leads to difficulty with spelling and writing. These are neurological disorders that affect the brain’s ability to store, process or communicate information. These disabilities are frequently confused with mental retardation, Mr. Gerber said. As a result employees should look carefully at their individual situations before deciding whether to tell a supervisor or co-worker about their disability.

 

Some companies have a “culture of acceptance” where disabled workers feel comfortable, Mr. Gerber said. But in other companies, “the risks of disclosing are sometimes too great,” he said. Yet in order to receive workplace accommodations under the A.D.A., employees must disclose their disability. hen a 26-year-old literary publicist in Washington, with a language- processing disorder and attention deficit disorder disclosed her disability two and a half years ago to a supervisor at a previous job, it was not taken well. “I was told, basically, ‘We’re not going to hold your hand,’ ” she said.The publicist, who did not want her name used because she feared the reaction of current co-workers, switched to an entry-level job at the company, rather than continuing in the event coordinator position she had been hired to do.This kind of “underemployment” is common, Mr. Gerber said. “Employees with learning disabilities hold back as a way of protecting themselves and are often overqualified for the job they are doing.”  About nine months ago, the publicist landed her current job and a few months later told her new boss about her disability. “I was tired of struggling in silence,” she said. “Fortunately my boss was very accepting and open. Now we meet once a week to go over my projects because there is a lot of information to remember. I feel less overwhelmed and am more productive.”

Accommodations for those with learning disabilities are usually inexpensive, generally under $500, with many costing nothing at all. For example, Ms. Flagg at Krysalis reads everything out loud, either to herself or her partner, and organizes things by color rather than alphabetically. Other accommodations can include allowing employees to make audio recordings of information, having reading materials presented in an audible format or extending the time allotted for learning job tasks or performing work.

But Susanne M. Bruyère, director of the Employment and Disability Institute at Cornell University, said accommodations would not solve the biggest problem facing these employees. “It’s the attitudes of coworkers, supervisors and managers that are the biggest barriers to success in the workplace,” she said.Ms. Bruyère said corporate America had become a bit more sensitive toward workers with learning disabilities, but that the record was spotty at best. A positive sign, she said, is the number of companies opting to become members of the Business Leadership Network, a nonprofit trade association of companies that seek to hire and retain people with disabilities, as well as market products to them. The network now represents about 5,000 employers.

 

 

Highmark, a health insurance company based in Pittsburgh, joined the network in 2000. It took the company two years to create a corporate culture that encouraged acceptance of learning disabilities, said Tammie McNaughton, director of corporate diversity for the company. “Now employees feel safe in identifying themselves,” she said.

Companies that allow workers with learning disabilities to thrive may reap unforeseen benefits. Ms. Flagg said workers like her often brought a fresh perspective to the job. “I don’t see the world the way everyone else does and that has enhanced my ability to innovate,” she said.

Arlyn Roffman, a special education professor at Lesley University and author of “Meeting the Challenge of Learning Disabilities in Adulthood,” said employees with learning disabilities were often “incredibly hard workers.” “They also tend to be creative problem solvers,” Ms. Roffman said. “It’s the yin and yang of the disability — along with the challenges, there are gifts.” But despite the small steps forward, learning disabilities are still widely misunderstood, Ms. Roffman said, and until that changes, workers will remain reluctant to speak up.

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How can the work place be adapted to help disabled workers ?

Supported Employment

What is Supported Employment?

Supported employment facilitates competitive work in integrated work settings for individuals with the most severe disabilities (i.e. psychiatric, mental retardation, learning disabilities, traumatic brain injury) for whom competitive employment has not traditionally occurred, and who, because of the nature and severity of their disability, need ongoing support services in order to perform their job. Supported employment provides assistance such as job coaches, transportation, assistive technology, specialized job training, and individually tailored supervision.

Supported employment is a way to move people from dependence on a service delivery system to independence via competitive employment. Recent studies indicate that the provision of on-going support services for people with severe disabilities significantly increases their rates for employment retention. Supported employment encourages people to work within their communities and encourages work, social interaction, and integration.

Definitions

A job coach is a person who is hired by the placement agency to provide specialized on-site training to assist the employee with a disability in learning and performing the job and adjusting to the work environment.

Natural supports are support from supervisors and co-workers, such as mentoring, friendships, socializing at breaks and/or after work, providing feedback on job performance, or learning a new skill together at the invitation of a supervisor or co-workers. These natural supports are particularly effective because they enhance the social integration between the employee with a disability and his/her co-workers and supervisor. In addition, natural supports may be more permanent, consistently and readily available, thereby facilitating long-term job-retention.

Basic Components

Supported employment services should achieve the following outcomes: opportunity to earn equitable wages and other employment-related benefits, development of new skills, increased community participation, enhanced self-esteem, increased consumer empowerment, and quality of life. The types of supported employment services used depend on the needs of individual consumers. The following are the basic components of supported employment:

Paid Employment--Wages are a major outcome of supported employment. Work performed must be compensated with the same benefits and wages as other workers in similar jobs receive. This includes sick leave, vacation time, health benefits, bonuses, training opportunities, and other benefits. Employment must be for at least 18 hours per week.

Integrated Work Sites--Integration is one of the essential features of supported employment. Individuals with disabilities should have the same opportunities to participate in all activities in which other employees participate and to work alongside other employees who do not have disabilities.

Ongoing Support--A key characteristic which distinguishes supported employment from other employment programs is the provision of ongoing support for individuals with severe disabilities to maintain employment.

Supported Employment Models

Several supported employment models are being used to provide the benefits of work for people with severe disabilities.

Individual Placement Model--A person with a disability is placed in a job in a community business which best suits his/her abilities and preferences. Training is provided on the job site in job skills and work related behaviors, including social skills, by a job coach. As the employee gains skills and confidence, the job coach gradually spends less time at the worksite. Support is never completely removed. The private or public vocational rehabilitation agency furnishing the job coach is always available to the employer for retraining for new assignments, assisting in dealing with challenging behaviors, supplying periodic consultations with co-workers and employer, giving orientation and training for co-workers.

Enclave Model--A small group of people with disabilities (generally 5-8) is trained and supervised among employees who are not disabled at the host company's work site. Persons in the enclave work as a team at a single work site in a community business or industry. Initial training, supervision, and support are provided by a specially trained on-site supervisor, who may work for the host company or the placement agency. Another variation of the enclave approach is called the "dispersed enclave." This model is used in service industries (e.g., universities, restaurants, and hotels). Each person works on a separate job, and the group is dispersed throughout the company.

Mobile Work Crew--A small crew of persons with disabilities (up to 6) works as a distinct unit and operates as a self-contained business that generates employment for their crew members by selling a service. The crew works at several locations within the community, under the supervision of a job coach. The type of work usually includes janitorial or groundskeeping. People with disabilities work with people who do not have disabilities in a variety of settings, such as offices and apartment buildings.

Small Business Model--Within a small business, there may be up to six employees with disabilities, but not more than the number of employees without disabilities. The small business operates like any business, generating work and paying employees from revenues received. The small business is located within the community.

Benefits to Employers

• No fee to employer

• Thoroughly screened applicants

• Employees' abilities matched to job requirements

• On-site job training by professionals

• Additional training, as necessary

   

• Follow-up services for the duration of employment