Cover Stories: 1. Rethinking the Social Security policy wasteland. By Marta Russell..
2. Social Security: What it does, what it should do. By Harriet McBryde Johnson.
Letters: 'Care Juggernaut,' '90 days,' election.
News: Euthanasia, Wendland, visitability, Disability Studies at the Crossroads.
Poetry: Dwelling, by Constance Merritt.
WHAT?! Department: Olympics, hunting, detachment.
FEATURE Story: OASIS and the 'Bath Aide' by Adrienne Rubin Barhydt.
Book reviews: Prenatal Testing and Disability Rights, Expecting Adam, The Little Locksmith, Life Prints.
The Media Edge: When disability issues were news.
by Mary Johnson.
WE WISH WE WOULDN'T SEE" 'Help,' says the advertisement.
"Over the edge" Department: Crip Cam Survivor by Bob Mauro.
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Editorial: The benefits mess.
Ever think of the actual meaning of the words "social security?" They seem pretty simple. But nobody's ever taken them at face value, it seems, since the 1930s when the Social Security Act was passed as part as FDR's New Deal and we saw ourselves as one nation.
That was a long time ago.
We start off 2001 trying to re-examine the principles underlying the Act, asking why disabled people "routinely get conceptualized as non-productive, dependent freeloaders," as Marta Russell, longtime leftist disability activist and author of Beyond Ramps: Disability At The End of the Social Contract, puts it in our cover story.
Even if we change the view of Congress "from 'disability means dependent and unemployable' to the view that 'all people with disabilities can and should work,' it will not change the view of society," disability scholar David Pfeiffer tells Russell.
"Some disability policymakers, conceding that this is the prevailing view and that not much can be done to change it, have bought the line that, in order to be seen as having any value in this society, disabled people must be gotten off the benefits rolls," Russell continues. But "short of a revolution, unemployment is simply going to be the condition for millions in our market economy -- and disabled people will continue to be disproportionately affected," she says in her story. ""Until we address the matter of full employment and the right to a job or a guaranteed livable income in its place for all citizens, disabled or nondisabled, disability policy will remain in a incremental-reform policy wasteland."
When Harriet McBryde Johnson isn't writing for disability magazines, she's a lawyer whose practice includes Social Security. Johnson gives us an overview of what Social Security does, and her view of what it should do.
"The Social Security system irrationally divides the world between those who can work and those who cannot," she writes in her story. "Perhaps that division made some sense in the work world of the 1930s," she writes; today, "with the right resources and job accommodations, almost anyone can work." But "the current disability benefits structure too often gets in the way of responsible work, savings, and investment. It pushes people into ever more expensive, dream-killing dependence."
Medicare and Medicaid are Social Security programs, too. The disability rights movement has focused on Medicaid reform. But for many on Social Security disability benefits, this program "for the poor" doesn't affect them. Medicare, though, is even more mired in the medical model than Medicaid. Adrienne Barhydt's story of her efforts to get some personal assistance services through Medicare would be funny if it weren't so tragic. Though she's legally entitled to 28 hours of services a week, she simply can't get any, no matter how she tries. Her experience speaks for many.
About our revised print format and content: The new format of this issue reflects our effort to recognize the changing way in which most of us are handling information today. We hope to offer subscribers to our print edition a more substantial publication, focusing on issues readers have told us are important to the disability rights movement.
Between issues, our website -- raggededgemagazine.com -- will give readers information and commentary on breaking news, as well as links to disability rights movement activism, commentary and news features. The stories you read here in the print edition will eventually make their way onto our website -- but we make sure that our subscribers get them first.
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Letters Department:
Doesn't feel good, but feels necessary:
"The Care Juggernaut" (Nov./Dec.) is an incredibly powerful article, and I plan to direct lots of people to it.
As a Medicaid employee involved in our state's Olmstead planning efforts, this article gives me a much-needed perspective. We have to find more ways of putting the person with the disability at the top of the decision tree. The article forced me as a person with a disability to confront my tendency to rely too much on my wife for certain kinds of assistance.
Thank you for challenging me. It doesn't feel good, but it feels necessary.
Bill West, Administrator
Consumer Directed Attendant Support Program
CO Dept. of Health Care Policy and Financing
Denver
Sainthood:
I have never liked the term "caregiver." I notice that it is used as if to say, "this person is a saint/hero to do all this giving of care." In life we all need to do what we need to do. When you give you also get.
Brenda Klauditz
60 days, 90 days, too long:
Do Wendy Stewart and I live on the same planet (Letters, Nov./Dec.)? She says, "None of us needs for people to drive around the countryside looking for non-compliance in businesses that cannot afford to be sued." Who would need to drive around looking? Inaccessibility is in my face every day.
In my community, there are no food stores, government offices, doctors offices or hospitals accessible to me. The best I have been able to do is to get some of them to bring products or services to me outside their door.
She says, "Being inconvenienced is not equal to losing your business or your livelihood through a long court battle." I do not call the lack of food, medical care, or government services "being inconvenienced." They are life supports. As Ragged Edge pointed out, the ADA specifies that businesses don't have to make changes that will drive them out of business or even be a financial burden.
Doctors, hospitals, and government can refuse me service outright by not making their buildings accessible. However, many of us with disabilities lost our livelihoods when we became disabled, by the actions or inactions of the inaccessible businesses.
Part of the problem is the two-tier structure of the ADA. Some of us are covered only on a case-by-case basis, which amounts to no coverage. Buildings will never be modified, nor new buildings constructed with our needs included. But even for people whose needs are codified into the ADA Accessibility Guidelines, when the courts are inaccessible, then suing for access is not workable.
If I have to wait 90 days, or even 60 days, before I get food or medical care, I'll be dead by then. These businesses have had ten years to comply with the law. Ignorance of the law is never an excuse.
Perhaps Stewart needs to rethink just who is really being served here by her 60-day notification proposal.
K. Munson
Election mess:
The results of this election have been a mess. The disability rights records of George W. Bush and of Albert A. Gore have also been a mess. We need to give them (either one!) a honeymoon of non-cooperation they will never forget: strikes, more of the Rev. Jesse Jackson and so forth by mid-March, 2001. Let's not forget that we are the nation's current "majority minority" -- over 54 million, at least. It is past due for us, as The Disability Rag suggested in its September, 1982 issue.
Marquita V. Doohan
Doohan has a good memory -- yes, we did say that in Sept. 1982! -- ed.
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News from the Disability Rights Nation"
Dutch legalize doctor-assisted death:
In November, Holland became the first nation to formally legalize "physician-assisted suicide, approved by a vote of 104-40 in the Dutch parliament.
In 1993, Holland's legislative body approved guidelines under which it was understood doctors would not be prosecuted, even though it remained a crime punishable by a maximum 12-year prison sentence.
Those guidelines say that a person must be "undergoing irremediable and unbearable suffering," be aware of all other medical options and have sought a second professional opinion. The request must be made voluntarily, persistently and independently while the patient is of sound mind. Doctors are not supposed to suggest it as an option.
The new law also allows one to leave a written request for a doctor-induced death when one becomes "too physically or mentally ill to decide" on one's own.
No other country has attempted to legalize euthanasia, although, according to news reports, it occurs without punishment in Switzerland, Colombia and Belgium.
Texas HMO suit settled:
Do health maintenance organizations discriminate against people with disabilities? A potentially far-reaching suit filed under the Americans with Disabilities Act against HealthTexas was settled in November, with HealthTexas insisting they had not discriminated. The HMO had made 30 motions to the court to dismiss the case.
HealthTexas encouraged patients with disabilities and chronically ill patients to leave the health plan in order for the group to maximize its profits, attorneys for the disabled people charged. Their suit contended that HealthTexas' contracts with some managed care organizations called for capitated fees and provided other financial incentives for HealthTexas physicians to minimize care.
Plaintiffs said they were made to wait for longer periods to see doctors, receive prescriptions, and gain referrals to specialists, than nondisabled patients receiving less costly care.
Dr. Jorge Zamora told jurors he was fired by HealthTexas Medical Group in 1996 for insisting on expensive tests and referrals for patients with disabilities.
Calif. will re-introduce death bill:
California Assemblywoman Dion Aroner is expected to reintroduce her bill to legalize "physician assisted" death this January, according to information from Not Dead Yet.
Her bill last year, modeled on Oregon's legislation, made it through two committees before being defeated by opponents.
Urbana becomes 'visitable':
After two years of hard work by advocates of "visitability," Urbana, Illinois became the first community in Illinois to pass a visitability ordinance, modeled on ordinances in Atlanta and Austin, Texas.
These laws ensure that people with disabilities can visit others in their homes by requiring:
-- One no-step entrance at the front, back, side or through the garage
-- Doors (including bathroom) at least 32 inches wide
-- Passageways (halls, small rooms) at least 36 inches wide
-- Reinforcements in bathroom walls around the toilet and bathtub/shower to permit installing grab bars when needed
-- Light switches and other environmental controls between 15 and 48 inches from the floor.
The Urbana law, going beyond the mandates of the other communities, covers duplexes as well as single family homes constructed with City funds.
Although many projects that have already been planned in the City are grandfathered and are not required to be "visitable," said the Illinois advocate who worked on the law, "all future projects that involve funds flowing from or through the City are covered."
Advocates file brief supporting Robert Wendland
Sometime soon, the California Supreme Court will consider the case of Robert Wendland.
Seven years ago this past fall, Robert Wendland, then 42, rolled his pickup truck; he was in a coma for 16 months. He remains "severely cognitively impaired," say advocates. He is paralyzed on the right side. He communicates using a "Yes/No" communication board. He receives food and fluids through a feeding tube.
Wendland, in rehab sessions, has been able "to grasp and release a ball, operate an electric wheelchair with a joystick, move himself in a manual wheelchair with his left hand or foot, balance himself momentarily in a standing frame, draw the letter 'R' and choose and replace requested color blocks out of several color choices."
His wife, Rose Wendland, says that before the accident Robert had told her that he never wanted to be dependent on life support; she has repeatedly sough to have the Lodi Memorial Hospital withdraw the feeding tube. the California Medical Association has sided with Rose.
Robert's mother, Florence Wendland, went to court to block withdrawal of the feeding tube. She won in the local courts, but in February three appeals judges ruled that the evidence backed Rose.
Then, before the local court could hear the case again, the Supreme Court agreed to hear it.
Disability advocates have filed a friend-of the court brief; those signing the brief include Not Dead Yet, ADAPT, The ARC, Brain Injury Association, Inc., Center For Self-Determination, The Center On Human Policy At Syracuse University, The Disability Rights Center, The National Council On Independent Living, The National Spinal Cord Injury Association, Self Advocates Becoming Empowered, and TASH.
"The Wendland case comes at a crucial time in U.S. social history as we confront issues related to allocation of health care resources, human rights and liberties, advancing technology and an aging population," says the brief. Wendland's situation, "involving significant cognitive disabilities and reliance on others for basic needs, is not unique, and will become increasingly common. The issues his case presents must be resolved using a progressive analysis that carefully considers the policy implications involved. Society must not give surrogate decision-makers virtually unfettered authority to kill."
Eagles and Turkeys go to friends, foes
ADAPT, Microsoft and the Bank of America got "Eagles" from Disability Rights Advocates this fall; The Cinemark movie chain, Alabama Gov. Donald Siegelman, Rep. Mark Foley (R-Fla.), and Chuck E. Cheese pizza got "Turkeys." The Eagle and Turkey Awards have become an annual event for the Oakland-based disability law firm; this was their fourth year.
Microsoft won its Eagle for efforts to recruit disabled employees and build access into its products. Bank of America won for installing more than 2,500 "talking" ATM machines. ADAPT earned its award for years of activism.
Pacific Bell Park was recognized for building what DRA calls one of the most accessible ball stadiums in the nation.
Chuck E. Cheese got its Turkey for firing a mentally retarded man in his first day on the job cleaning toilets and bathrooms at a Wisconsin restaurant. (A jury awarded Perkl $70,000 in damages and $13 million in punitive damages, which were later reduced to $300,000, the maximum allowed under the Americans with Disabilities Act.)
Foley's Turkey was awarded for introducing the ADA Notification Act, which would require a business be given 90 days' notice to "correct access violations" before being sued (see "10 years and 90 days," July/August, 2000).
Alabama Gov. Donald Siegelman won his Turkey for asking the U.S. Supreme Court to strike down Title II of the ADA in the case Univ. of Alabama v. Garrett (Sept./Oct.) The Court is expected to rule on the case in the near future.
Cinemark USA Inc. nabbed its Turkey for putting all the accessible seating down in the front. The Department of Justice has filed suits against Cinemark.
For more news and updates, visit us online at www.raggededgemagazine.com
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NIDRR Conference aims at global perspective
Disability Studies
at the Crossroads
by Mary Johnson
"Disability studies is about discrimination,"
Harlan Hahn, professor of political science at the University of Southern California, told the over 200 people who crowded into the National Press Club conference room in October.
What is "disability studies?" What is its relationship to rehabilitation? Is it "studies" or "indoctrination?" Who should teach it? At last October's National Institute on Disability and Rehabilitation Research-hosted conference, "Disability Studies: A Global Perspective," the questions were raised but not answered.
"It's referred to as an 'emerging' field," panel moderator Carol Gill of the University of Chicago at Illinois told her audience. "That word gets attached to things that elude definition because they're complex, or because their parameters are open to interpretation, or because we know the thing in question is different from the more traditional things that it resembles, but we're not exactly sure how it differs."
Disability studies evolved along with the disability rights movement, David Pfeiffer, resident scholar at the University of Hawaii at Manoa, reminded the group. "Viewing the disability experience as one of discrimination is the most fruitful for both research and advocacy," he said. "It unifies both the disability movement and disability studies."
The disability rights movement has been "absolutely crucial" to the development of disability studies in Britain as well, said Mike Oliver of the University of Greenwich, "providing the main ideas and shaping the academic agenda.
"But as disability studies becomes codified and encapsulated and buoyed by its own success, it spawns conferences like this one," he continued. "The very point at which women's studies was accepted as a legitimate academic discipline in its own right was precisely the point at which it seemed to lose its radical, cutting edge."
David Mitchell, an associate professor in the Department of Disability and Human Development at the University of Illinois at Chicago, questioned whether the field of disability studies would be able to evolve without "oppressing those it studies." Mitchell, like many of the speakers, was a past president of the Society for Disability Studies, or SDS. The group had the same acronym as the 1960s radical student group, Students for a Democratic Society. "It was not by accident that the Society for Disability Studies chose that name" with its imitative acronym, Wellesley college bioethicist and former SDS president Adrienne Asch told the group.
Disability studies "has to be based in our own experiences, and that means that we, disabled people, have some priority, some privilege, in writing about and theorizing about and teaching about disability," said Hahn.
"We have an 'experience' that hardly anybody else has. With the emergence of chronic health conditions as a medical priority, we can offer a wealth of material on how to get from here to there -- we can tell future generations how to resolve these questions. And it's terribly important that we keep this notion central."
"We can't pretend that rehab science and disability studies are just different ways of saying the same thing -- in fact they are really at loggerheads," said Oliver.
"It's a war," said Thomas Strax, Medical Director of the RFK Johnson Rehabilitation Institute in Edison, New Jersey, "and you're either on one side or the other."
"In trying to speak to two communities, the academy and disabled people, disability studies faces the difficult task of producing work that the disabled person on the street will understand as well as trying to satisfy the academy of its academic credentials," said Oliver, who edits the British academic journal Disability and Society. "Writing for two such diverse audiences is not always easy and disability studies has not always succeeded."
"We talk about a 'disability community,'" Asch told the conference. "But we have to face the fact that plenty of people who have impairments don't think of themselves as part of the disability community; don't know of it; and don't want to be part of it. Yet they too have things to tell us; we are studying this group of people as well.
"We need to spend less time arguing about 'who has the right model' and more time figuring out where each model works best in which situations."
We've heard a lot about how we should teach but we do not talk about what we teach," Hahn observed at the meeting's end. The conference had heard panelists discuss access, administration issues, and concerns that online "distance learning" might be used to duck campus accessibility issues. They'd heard discussions on disability studies in developing nations, where the issues, they were told, were quite different. But there had been a "serious lack of discussion as to the content of disability studies," Hahn pointed out.
"What are the substantive issues of disability studies?" he asked. "We have talked all around that; but we have not addressed this central issue.
"I have a serious concern that this may be about an effort to steal our name," he continued. "We have an established body of literature in disability studies that is quite different than the literature of rehabilitation. I find very little relation between the two. And I think the worst possible outcome of this conference was that we talked about disability studies and rehabilitation and we confused people with the idea that they have something in common."
Earlier in the day, the World Institute on Disability's Simi Litvak had remarked that she feared disability studies would "come to be like 'independent living,' where we have nursing homes that are called 'independent living centers.'"
"There's almost come to be a consensus that disability is a detriment to the 'quality of life,'" said Hahn, who last year received a NIDRR Switzer Fellowship to study the use of "quality of life" measures. "A lot of people think that the 'solution' to disability is to 'cure 'em or kill 'em.'
"This is why the experience of people with disabilities needs to be at the core of the discipline."
"Disability studies has got to get off its backside and do something to change the conditions in which people with disabilities find themselves," said Oliver. "The purpose of disability studies is to change the world."
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Video available
Video of the conference sessions are available online for viewing with RealPlayer software (free; downloadable at site); there are captioned and un-captioned versions. Go to http://www.connectLive.com/events/disabilitystudies
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Rigor
At the 3-day conference on Disability Studies, more than one speaker noted the need for academic rigor to forestall critics.. And the newly emerging field certainly has its share of those. Scholar Leonard Cassuto wrote to the Chronicle of Higher Education that the field needed "to choose openness as the way to legitimacy. " Salon.com writer Norah Vincent called disability studies theory a "surreal ideology," "useless to disabled people" and "self-contradictory."
"Does the empowerment model enlighten us about disability's real role in the lives of individuals and society? Or does it simply obfuscate an unpleasant truth with feel-good oxymorons?" she wrote in her Aug. 18, 1999 story.
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When establishing a disability studies program at a university, one needs to ask...
-- What's in it for the institution? Colleges and universities no longer establish new programs just because they're a good idea. The general worth of the proposition isn't good enough. You have to know the strategic plan for the university, and be able to show how this fits into it.
-- How will the program attract new resources? How will a disability studies program bring in revenue through grants, contracts and increased tuition?
-- How will the program attract new and highly qualified students? Enrollments and SAT scores count.
-- How will the program raise the level of scholarship at the institution? It must insure that the scholarship generated by the faculty of the new program will be excellent.
-- How will the program increase the institution's national, international reputation? We must hire the most visible scholars.
-- Will the proposed structures be flexible enough to promote interdisciplinary study? We must be able to attract scholars from varied fields. Virtual structures tend to promote interdisciplinary approaches.
Edna Mora Symanski, Dean, College of Education,
University of Maryland
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You could look it up maybe
It may be an emerging academic field, but it's hard to find online.
"Disabilitystudies.org" isn't even a website yet. The www.disabilitystudies.com site is home to Disability Studies Online Magazine. SDS.org takes you to a religious organization; SDS. com is a technology company. The Society for Disability Studies' official website -- www.uic.edu/orgs/sds/ -- is anything but intuitive.
And it's nearly impossible to locate disability studies departments on university websites. At some schools, it's part of the Rehabilitation Department, part of the medical college. At others, it's under Sociology, or Political Science, or Humanities. At a number of universities, "university affiliated programs" on developmental disabilities host the school's disability studies program. In yet other places, it's part of the speech therapy department.
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Programs in disability studies
Canada
Ryerson Polytechnic University
United Kingdom
Suffolk University
University of London
University of Leeds
University of Sheffield
United States
Georgetown University
Northern Arizona University
Syracuse University
Temple University
University of Arkansas
University of Hawaii at Manoa
University of Illinois at Chicago
University of Maine-Orono
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Cover Story section:
Rethinking the Social Security
policy wasteland
by Marta Russell
Marta Russell is author of Beyond Ramps: Disability at the End of the Social Contract (Common Courage Press).
My friend David just
went through a noxious and unproductive bout with the Social Security Administration.
David, one of the autistic individuals Dustin Hoffman spent time with while developing his "Rainman" character, works for a large chain electronics retail corporation. He remains qualified for Supplemental Security Income (SSI) even though he has a job, both because he is disabled and because he earns so little money. When David wanted a computer he saved for six long years before he was able to have the funds to buy one.
The story is a simple one. After the Los Angeles earthquake, David and his mother had to move out of their apartment for earthquake repairs. David went to stay in board-and-care facility while his mother made other arrangements for herself for the months it took to do the repairs. Prior to this move, David had been sending the Social Security Administration the required reports of his earnings so SSA could calculate deductions. But due to the disruption of the earthquake, David's routine was upset and he did not send the required copies of his paychecks to SSA during the months he was not living at home. So SSA put a stop on David's SSI check.
David and his mother got a hearing before an administrative law judge; David's mother presented the judge with proof of his earnings. As caretaker of his SSA account, she pled that although she is ultimately responsible for sending in the copies of his paychecks, she has given David any and every possible means of being self-sufficient and independent in keeping with independent living philosophy -- and has allowed him to make and send his reports himself. David was very capable of doing this, and had done it without failure prior to moving into the group home. As it turned out, David thought that he did not have to send the paycheck copies, because he was living at the group home, not at his home. "David is not capable of lying, he doesn't know what that is," his mother told the judge.
David's mother told the judge she had explained to each of the three workers at the board-and-care facility that David needed to send SSA the copies of his paychecks each month, but that they had failed to see that he did it.
The judge made no allowances for any of this, and ruled that not sending the reports was enough reason to discontinue David's SSI payments for the period in question.
Later, SSA reinstated David's SSI payments -- but made no back payments for those months during which David had failed to send his paycheck copies.
David had his mother to fall back on for financial support in the interim -- but what about others who do not have such support, who innocently make mistakes and get penalized? A loss of a few hundred dollars to some may mean losing one's apartment and winding up on the streets. It may create conditions where one can no longer hold a job.
It can even end in death. Some may recall Lynn Thomson's story. She tried to earn some extra money by stuffing envelopes at home.
Unbeknownst to Thomson, the work she did was in violation of SSA regulations. When she reported her income to SSA, they responded with a letter stating that she had received an overpayment and that her benefits would be terminated until it was paid back. SSA claimed that her Medi-Cal and attendant benefits would also be cut off. Losing one's attendant is a ticket for a nursing home, but loss of Medi-Cal is a death sentence to a quadriplegic.
SSA was wrong about this part; she would not have lost her Medi-Cal. But she was never told this, and after a protracted and demeaning contest with SSA, Thomson killed herself, leaving a recorded message saying that the reason for her suicide was that SSA had put her through hell and she could no longer live with the anxiety.
Laura Hershey, who often writes about SSA and the pitfalls of work, quotes a colleague: "A co-worker of my sister killed himself last week. He had been working part-time while receiving disability benefits due to his visual impairment. He had gotten a letter from Social Security saying he should never have gotten disability benefits, and that he would need to pay back all that he had received."
Sporadic or parttime work has many pitfalls.
In order to comply with the rules, individuals who rely on sporadic work need to have their personal assistance services, SSI/SSDI and Medicaid share of cost recalculated every month that they earn income, something these systems are not efficient enough to do without delays and shortfalls for the recipient. It would be "highly inadvisable for any disabled individual to work at part-time or sporadic employment, "warns Los Angeles disability activist Nancy Becker Kennedy; it risks "throwing these very sluggish benefit systems into confusion."
Experience shows that this often results in losing one's healthcare, living allowance, and money to pay the personal assistant -- for months or even years -- while SSA and other agencies sort it out (and hopefully get it right when they do).
Disability organizations have been working to
incrementally reform Social Security's work rules for these very reasons. The Ticket to Work and Work Incentives Improvement Act of 1999 is one such reform; SSI Plan 1619, which allowed more deductions, was an earlier one. The Social Security Administration has now proposed to make automatic adjustments each year to the current "Substantial Gainful Activity" (or SGA) level, which is currently at $700 a month for individuals with impairments other than blindness; this figure would now increase along with increases in the average wage index.
Even tied to the wage index, a SGA amount of $700 per month "is still out of step with today's marketplace," says Bryon MacDonald, Social Security analyst for the World Institute on Disability.
Who can support themselves on $700 a month? The $700 SGA cut-off is an at-poverty level subsistence. The Federal poverty guideline sets the poverty level for an individual at $8,350/year; a SGA of $700 a month works out to $8,400 a year -- assuming one would be consistently working for a full year, which is often unlikely.
What is "poverty" -- and who defines it? The current system of measuring poverty dates back to the 1960s; there has been no recognition of changes that have occurred over the last 30 years. At that time, Department of Agriculture research showed the average family spent a third of its income on food; therefore a "poverty income" was determined to be three times what experts thought the minimum food budget should be. Even so, that economy food plan was "for temporary or emergency use when funds are low" and was only 75 to 80 percent of a Department of Agriculture "low cost food plan" (which, "if strictly followed," could "provide an acceptable and adequate diet," wrote Mollie Orshansky in 1965).
Nonetheless, the government has never adjusted the equation to take into account the sharp rise in housing, medical care, and child care costs of the following four decades which have altered the average household's economic picture. A 1990 study by Patricia Ruggles of the Urban Institute concluded that, in order to be comparable to the original threshold, the poverty level would have to be at least 50 percent higher than the current official standard. If basic needs were re-figured to the modern market, almost a quarter of the American people would be deemed to be living in poverty.
Cutting disabled persons off from disability benefits when they earn just $700 a month does not lift one out of poverty, much less give one a chance to achieve a decent standard of living before shoving one off what the National Council on Independent Living calls "the earnings cliff." The proposed raising of the SGA level will make no real difference to SSI recipients.
However, two meaningful reforms would be to end earnings limitations entirely and to raise the SSI resource limit from $2,000 -- and raise it substantially.
Others have made suggestions for SSA reform. Pointing out that the disability rolls have grown since passage of the ADA and employment expectations have not been met, leaving too many dependent on government benefits, Andy Imparato, head of the American Association of People with Disabilities, locates part of the problem in how "disability" is defined by SSA. To be disabled under Social Security regulations, one must pledge that one can't do any work at all.
Imparato calls for a redefinition of disability. "We need to reform disability benefits laws and systems so that people get the supports and services they need, have maximum choices and opportunities regarding employment, place to live, transportation, health care, long-term services and supports -- and never, ever, have to swear to the government that they cannot work in order to establish eligibility for long-term supports and services," says Imparato.
Yet even if we change the view of Congress "from 'disability means dependent and unemployable' to the view that 'all people with disabilities can and should work,' it will not change the view of society," says scholar David Pfeiffer of the University of Hawaii. "People with disabilities will still be seen as dependent and unemployable."
In large part, unemployment and poverty are the by-products of our economic system. Unemployment is not an aberration of capitalism; rather, it is a built-in component of a market economy that requires many people be unemployed and impoverished.
U. S. monetary policy as carried out by the Federal Reserve illustrates how U. S. capitalism preserves unemployment. The Federal Reserve is a system of quasi-independent banks overseen by a Board of Governors appointed by the President which sets interest rates. For many years now, it has essentially been running the economy of the nation.
Last April, the Bureau of Labor Statistics put the official unemployment figure in the U.S. at 5.5 million. But the real numbers are much larger: Another 3.1 million people work part-time although they would rather have a full-time job; still another 4.4 million who need jobs do not appear in this unemployment figure because they gave up looking for work, and thus are not counted anymore as part of "the labor force." The real jobless rate is closer to 13 million -- or 8.9 percent of the population -- more than twice the official rate.
Large numbers of people are left jobless because mainstream economists believe that a threshold of unemployment is necessary to avoid inflation and maintain the health of the American economy. The theory of a natural rate of unemployment (or "nonaccelerating inflation rate of unemployment" -- "NAIRU") has dominated macroeconomics for about 25 years. The Full Employment and Balanced Growth Act of 1978 (the Humphrey-Hawkins Act) mandates that the Federal Reserve promote full employment. But the Federal Reserve connects low unemployment with inflation, and has virtually disregarded the Humphrey-Hawkins Act, fighting inflation by raising interest rates, slowing economic growth, and keeping employment in check. When the unemployment rate drops, the Fed adjusts interest rates upward to discourage more growth -- employment -- believing this prevents inflation.
There are central bankers who reject the NAIRU theory, and these have adopted the "Taylor Rule," making their anchor of economic policy the "sustainable rate of growth." Under this theory, growth becomes "unsustainable" when unemployment drops below three percent. Under either theory, mainstream economic policymakers assume that at least three to six percent of the population must be unemployed at any given time to maintain a sound economy. And among those unemployed, perpetually, are "the disabled."
Disabled persons routinely get conceptualized as non-productive "dependent" freeloader members of society. Some disability policymakers, conceding that this is the prevailing view and that not much can be done to change it, have bought the line that, in order to be seen as having any value in this society, disabled people must be gotten off the benefits rolls.
A reality-based understanding, however, would acknowledge that, short of a revolution, unemployment is simply going to be the condition for millions in our market economy -- and that disabled people will continue to be disproportionately affected by monetary policy. This view challenges the notion that the problem is one of economic "dependency," and the solution "independence."
The political Right uses "dependency" as a way to pathologize and degrade populations which rely on government supports. Should we follow their lead? Most Americans benefit from government supports, whether they are CEOs of corporations or homeowners. Some of the wealthiest people in this country are "dependent" upon corporate subsidies. Middle-class homeowners are "dependent" upon mortgage interest rates being tax-deductible. Why not view disability supports as part of the same largess, rather than framing them negatively as leading to dependency, paternalism or "welfare"?
Labor market discrimination is a steady reality for most significantly disabled persons. A 1998 Survey by the National Organization on Disability/ Louis Harris found that among working age adults with disabilities, three out of ten work full- or part-time, compared to eight of ten of those without disabilities, a gap of fifty percentage points. The unemployment rate for disabled people, at 65 percent to 71 percent, depending on what source one uses, remains much higher than for the population as a whole. A recent Rutgers University study shows that most working disabled persons are twice as likely to be self-employed or in part-time or temp jobs. That means that income may be sporadic.
The Census Bureau shows a negative association between earnings and disability: in 1995, workers with disabilities holding part-time jobs earned on average only 72.4 percent of what nondisabled part-time workers earned annually; such wage differentials were observed for those working full time as well.
Median monthly income for people with work disabilities averaged about $1,511 for women and $1,880 for men -- as much as 20 percent less than the $1,737 to $2,356 earned by their counterparts without disabilities.
To achieve a decent quality of life, significantly disabled persons who face labor market discrimination will need ongoing support from government, regardless of how SSA defines disability.
MacDonald says, "I would argue that ALL persons with disabilities should be able to move in and out of public disability programs the way mainstream America goes to an ATM machine."
There is a case to be made for never ending
disability benefits, once one qualifies for them. Last year President Clinton signed The Social Security Earnings Test Elimination Act which permits seniors to earn as much as they want -- seniors can earn $100,000 or more a year and continue to receive their Social Security retirement benefits in full, without any deductions.
The same should be done for disabled people. Disabled persons are nearly three times as likely to live below the current poverty line -- 29 percent disabled live in poverty compared to 10 percent of nondisabled persons, according to a recent National Organization on Disability/Harris poll. During 1999, nearly 600,000 households filed for bankruptcy in the aftermath of a serious accident or illness. Those who manage to successfully become employed will not likely make up for the financial losses suffered during years of lost employment.
Historically those groups of persons who experience high labor market discrimination and cannot as readily get jobs in the market remain compulsorily unemployed and require more support from government. Framing the issue as one of "independence" versus "dependency" seems to miss the mark. Until we address the matter of full employment and the right to a job or a guaranteed livable income in its place for all citizens, disabled or nondisabled, disability policy will remain in SSA's "incremental-reform" policy wasteland. People like David, Lynn Thomson, and those battling SSA who too often go unknown and unnamed, will continue to pay a terribly high price.
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Social Security:
What it does,
What it
should do
by Harriet McBryde Johnson
Harriet McBryde Johnson is a lawyer and disability activist in Charleston, SC. Her practice emphasizes disability issues including Social Security.
It's called the American Dream.
A nice home. A strong family. People working hard to pay the rent and put food on the table. Beyond that, the dream means having the "little bit extra" it takes to buy a home, launch children into a good life, and cover the losses and setbacks that happen from time to time.
For most people it includes some non-essentials like an occasional family vacation, music lessons or a home computer. A good quality of life.
During the 1930s New Deal, the Social Security Act was passed to bring that dream closer for millions who had previously lived on wages that, at best, kept them at the precipice of catastrophe. In good times, they could pay rent, buy food, and keep the children clothed, but any setback -- an illness, a job loss, even a bad storm -- could mean destitution. When a worker died or became unable to earn even subsistence wages, there was no cushion. Sometimes aged parents and orphaned children found shelter with relatives, but too often the relatives had nothing to spare. By ensuring basic income protection to wage earners and their families, the Social Security Act brought a new level of stability to families and to the economy as a whole.
So what went wrong? Why does it seem that Social Security is telling us, people with disabilities, not to dream that American dream? Why is it saying that a hand-to-mouth existence, in poverty or at the brink of poverty, is all we can hope for?
I set out here to give a "big picture" answer to that question, but in the wonderful world of Social Security, the devil is in the details. Therefore, I have to start with a very lawyerly, very sincere disclaimer: This article is a discussion of public policy, not a source for how-to advice. It tells how the main Social Security programs work for most disabled people. Your individual situation is probably different. If you want to escape regulatory bondage and chase either the American Dream or your own personal dream, there are lots of creative things you can do. At most, this article may suggest some questions to ask a good benefits consultant. End of disclaimer.
Now, some background. I've prepared a table (see facing page) summarizing Social Security provisions that are key for people with disabilities. As the table shows, Social Security has evolved a lot since the 1930s.
The original program is now in Title II of the Social Security Act. In the disability community, Title II is often equated with SSDI, Social Security Disability Insurance. In fact, it is more than that: The correct acronym for Title II (and this is a world that lives and breathes acronyms) is RSDI: Retirement, Survivors' and Disability Insurance. Disabled people are among the beneficiaries of all three arms of Title II.
Working the acronym back to front:
DI, Disability Insurance, covers wage-earners who become disabled later in life. It pays these disabled workers and their qualified dependents.
S, Survivors' benefits, go to deceased wage-earners' minor children, their disabled spouses (along with some other categories of spouses), and their adult children who became disabled before age 22.
R is the granddaddy of them all -- the big Retirement program. It covers not only the retired wage-earner and but also disabled adult children of the wage-earner.
To sum up, if you're disabled, you might get Title II benefits based on your Social Security account from your own work, or based on your spouse's account, or based on a parent's account. The common thread is that entitlement to benefits -- and the amount of your check -- is always traced back to someone's contribution into the system in the form of FICA tax. These benefits are not means-tested or adjusted based on financial need. You can have a million dollars in the bank and still qualify for monthly benefits. However, to qualify as "disabled", you must be unable to work. If you "earn" more than $700.00 per month, you will be presumed non-disabled by Social Security. Disabled recipients of Title II also get Medicare coverage after a waiting period.
Title XVI, Supplemental Security Income, came later to the legislative scheme. One arm, SSI-D, covers disabled people. The other covers elderly people. SSI evolved when it became clear that Title II had failed to rescue many disabled and retired workers and their families from destitution.
Because all Title II benefits are keyed to someone's paying into the FICA system over time, millions of people -- people who lacked that FICA history and failed to qualify as a disabled adult child or disabled widow(er) of a Title II beneficiary -- were completely left out of Social Security's promise. Others found that years of intermittent low-wage work produced a Title II check of only $50.00 or $100.00 per month. SSI was designed to "supplement" Title II by guaranteeing a minimum income to disabled and elderly people.
Title XVI's SSI, targeted at disabled and elderly people, was part of the same broad anti-poverty policy that produced Aid to Families with Dependent Children (AFDC, commonly known as "Welfare"), targeted at poor single parents. A political consensus had emerged that these three groups -- people who were disabled, elderly, and single parents -- were not to blame for their poverty and therefore deserved a minimum income without working. As to single parents, the consensus has eroded. In 1996, "welfare reform" ended AFDC as a long-term entitlement.
To qualify for SSI requires proof of poverty similar to what is required under Welfare. The rules are complex, but in general, you don't qualify if you own "resources" (SSA's word for what accountants call "assets" and most of us call property, wealth, or money) worth more than $2,000.00. Your home isn't counted, and in some cases your car isn't counted, but most everything else is.
If you meet the resources test and have no income, your SSI check will be $512.00 per month in most states. (A few states supplement the federal SSI amount.) After a small exclusion, the $512.00 benefit is reduced by one dollar for every dollar of unearned income you get, including any Title II check. To encourage you to work, the government reduces your SSI by only 50 cents for each dollar you earn. If you get even one dollar per month in SSI, you are covered by Medicaid.
So the basic scheme is two programs for two kinds of people. Upon disability or old age, middle- and upper-class wage-earners get Title II and Medicare, usually supplemented by private pensions, insurance, savings, and investments. The very poor aged and disabled remain very poor -- but stay alive -- under Title XVI (SSI) and Medicaid.
For vast numbers of people, these two programs work reasonably well. Any Social Security lawyer will tell you about very grateful clients -- winning a difficult Social Security claim can be the difference between life and death. But when you factor in the real-world lives of some of us, especially those of us with expensive disabilities, fundamental irrationalities in the system become clear.
First, the Social Security system (both Title II and Title XVI) irrationally divides the world between those who can work and those who cannot. Perhaps that division made some sense in the work world of the 1930s, dominated by an uneducated labor force concentrated in manufacturing and agricultural jobs. However, since then, advances in technology, the growth of service industries, and the rise of part-time and temporary work, and self-employment, have changed what workers do and how they do it. With the right resources and job accommodations, almost anyone can work.
Second, the rules usually cut off entitlement before the individual is reliably earning enough money to replace the steady monthly income and medical coverage offered by Social Security -- for many people, working would be an unreasonable, self-destructive choice. This is the irrationality addressed by most of the Work Incentives that have been written into the law over the past few years. By allowing certain income and resources to be excluded from SSI calculations, allowing certain people to keep medical coverage after leaving the rolls, and so forth, Work Incentives have enabled many Social Security recipients to work and keep the safety net intact. But these Work Incentives are difficult and complex. Most recipients don't even know they exist. They remain narrow exceptions to the general rule that you get benefits if and only if you're unable to work.
Third, poor people's Medicaid is in many ways better than middle-class people's Medicare. Medicare was based on 1940's thinking on what basic medical coverage should look like. It covers a portion of doctor and hospital charges, and has an acute-care focus. Medicaid was based on 1960's research on what people need. While low reimbursement rates limit the number of participating doctors and hospitals, the consumer gets full coverage of a broad range of services. If you have expensive needs like kidney dialysis, HIV drugs, or full-time attendant services, Medicaid can be worth tens -- or even hundreds -- of thousands of dollars a year.
Fourth, the income and resource limits of Title XVI are too low to guarantee economic stability, even at the level of bare subsistence. Living on $512.00 per month is a delicate balancing act requiring ingenuity, persistence in locating other benefits, and considerable good luck. Any disruption -- the loss of that cheap rented room, the death of a loved one or even the death of a car -- can make the whole structure come tumbling down. When that happens, there's a need for more public support. When public support fails, people who can't survive on the streets typically wind up in institutions. We know all about the irrationality of institutions.
Do we have to accept a public policy that is aimed at helping us, but doesn't reflect the reality of our lives? What can we do? There are lots of options.
The most radical -- and rational -- option would be to sweep away the categories that divide us. Don't restrict Medicaid to poor disabled and elderly people. Make universal, comprehensive health coverage a right of citizenship so no one has to trade a good job or a nest egg for the services they need to stay alive. Don't restrict minimal income support to those defined as unable to work. Assume people are rational. They will work if benefits are structured so that work makes them better off than not working.
For those who think more incrementally, here are some more modest proposals:
First, make Medicare more like Medicaid so Title II recipients with expensive medical needs will not be forced to impoverish themselves to fund the services they need. Generally, Title II recognizes that both individuals and the broader public good are served by encouraging private savings and investments. To the extent that Title II recipients have private pensions, IRA's, and other resources, they enjoy a better quality of life with lower public investment.
Second, allow more people to buy in to Medicaid and Medicare without being poor or unemployed.
Third, restructure monthly benefits to reflect the reality that disability is not all-or-nothing. Allow people with work-related impairments to earn what they can, when they can. Over the course of our lifetimes, people who can work occasionally should be able to fall back on the rolls during periods of unemployment or get a partial benefit when working part-time.
Fourth, make sure that benefits are not cut off until the individual's income is of greater value to the individual than the benefits in question.
Fifth, raise Title XVI income limits above the poverty line. Raise the resource limit to allow a reasonable financial cushion to prevent poverty over the individual's life. Make sure the limits keep up with inflation.
Sixth, also under Title XVI, expand the categories of income and resources that are excluded from the limits. For example, just as home equity is excluded, so might home maintenance, taxes, and insurance.
Seventh, push SSA and the disability community to make full use of the Work Incentives, those lovely loopholes that already exist.
In pushing for a more rational Social Security system and a way out of the poverty trap, we need to be mindful that the effort is fraught with difficulty and danger. It's tempting to hammer on the simple message that "All disabled people can and should work." It makes people admire us so much!
But the more complicated truth is that for most of us, disabilities do limit the amount and kinds of work we can do. Many of us cannot hope to fund our expensive lives solely through work, at least not all the time. We cannot afford to lose our basic claim on the public largess or trade secure benefits for forced "workfare." We need to be wary of what happened to single parents when AFDC was revamped in 1996.
Like Welfare, the current disability benefits structure too often gets in the way of responsible work, savings, and investment. It pushes people into ever more expensive, dream-killing dependence. But we need to be sure everyone knows that the benefits are not the problem. Our beef is with the irrational restrictions that come with them. What we are after is a system that lets us do all we can for ourselves and our families. Nothing more, nothing less.
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Real life
Letitia is a research scientist with a unique combination of professional skills. A combination of chronic medical problems made her give up university teaching two years ago. Now a former colleague desperately wants her to be a consultant on an unusual government contract. Because her unique knowledge is what's needed, she will actually do very little work, and that mostly at home. They are ready to pay whatever she asks. At this stage, she's ready to jump on the opportunity. The problem is, the contract lasts three years and she doubts whether she will ever have another opportunity to work like this one. How will she go back to SSA and prove she "can't work," when she will have worked for three years, with her disability, at a very high salary?
Leon and Marge retire after operating a corner grocery Leon inherited from his father. Over many years, the store barely turned a profit, but they hung on. At age 65, they closed the store and sold the store building. Their Title II benefits are a pittance, but they figure the proceeds of the sale will see them through if they are careful. Then Leon becomes disabled. He needs full-time attendant services and even with Medicare, the medical bills are staggering. They are told they can qualify for SSI and Medicaid if they spend their nest egg down to $2000.00. That's not enough to pay the taxes on their home for the next year. They decide to deed the house to their son, who will pay taxes, insurance, and upkeep and let them live in it for the rest of their lives. Then they are told that living rent-free in someone else's home is "income" that keeps them off SSI.
June has Down syndrome and lives on her own. She has a job structured to let her retain a small SSI check. She gets a rent subsidy under another government program. She can function independently with supports -- Medicaid pays someone to come to her house to help her manage her money, plan her shopping and meals, and manage her asthma. Medicaid also pays $250.00 per month for her asthma medications. Her parents, still working, encourage her independence. They give her little extras, like the big fish tank she loves. Her father dies suddenly. She gets a Title II check as his survivor. Because of that check, she loses SSI and Medicaid. Her income is a few dollars higher, but not enough to pay for her own prescriptions and support services. She's devastated about losing her father and doesn't really understand what's happening.
Maybe a good benefits counselor could come up with a workable plan for each of these beneficiaries, and slug it out with SSA. However, for most people in these situations, dreams simply die. They accept dependence, poverty, and unemployment because that's what the system seems to have in mind for them.
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TITLE II (RSDI) TITLE XVI (SSI)
Programs Old age retirement, Supplemental Security
survivor's and Income (SSI) for
disability insurance (SSDI) disabled & elderly
Eligibility Age or disability Age or disability
plus history of working plus extreme
and paying FICA tax poverty
Basic policy goal To protect family income To help one category
when wage earner retires, of the "deserving
dies, or becomes unable poor"
to work
Beneficiaries Disabled/retired wage Disabled or elderly
earner and certain poor person (no
dependents and survivors, family benefits
including disabled adult provided)
child, disabled widow/er
Benefit amounts Wage earner's history of Amount of individual
based on paying into FICA system and household income
Maximum monthly $1,536 individual $530 individual
benefit (as of Jan. '01)
Linked medical Medicare (29-month wait Medicaid (no waiting period before
coverage after disability to be covered) coverage), full payment for
co-pays & deductibles, approved charges/
no drug coverage, no providers, 3 Rx/month,
long-term (PCA) services long-term (PCA) services
Disability defined Severe physical or mental Same
impairment (or combination)
that makes the individual
unable to perform "substan-
tial gainful activity"
Substantial gainful If earning $700 per month Same (for eligibility
activity (SGA) or more in employment purposes)
presumed
Unearned income Except for workers' comp, After small exclusion,
does not reduce benefits reduces benefits,
dollar for dollar
Earnings from work Do not reduce benefits, After small exclusion,
until SGA is reached; reduce benefits,
then benefits eventually fifty cents for each
stop dollar earned
Resources (wealth) have no effect on benefits With some exclusions
millionaires may get (mainly home equity),
monthly checks and if you have resources
Medicare worth more than $2,000,
you lose SSI & Medicaid
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Poetry
Dwelling
Mortals dwell in that they receive the sky as sky. They leave to the sun and the moon their journey, to the stars their course, to the seasons their blessing and their inclemency; they do not turn night into day nor day into a harassed unrest.
Martin Heidegger
I wished as men wish: "May this day be different!"/ The birds were wishing, as birds wish -- over and over,/ . . . / "May this day be the same!"
Randall Jarrell
Dear God, this dusk
your sky has gone
salmon and slate blue,
and this alone
would be blessedness --
to lie here in the quiet
intent upon a page
I cannot read,
yes,
this alone
would be blessedness
not only salmon sky
and this your bluest hour,
but more so, grace
that turns these tired eyes
windowward to search
the common day.
I think that I could live
joyfully in days,
in seasons and in days,
but it's a long walk to freedom
and history's a blood
hound at my heels.
(The river is wide
I can't cross o'er
Neither have I
Wings to fly . . . )
Meanwhile, the future
loads its shiny revolver,
holds cold metal flush
against the temple
of blessedness; the present
shatters:
fear
and worry,
hope
and scurry,
plans,
plans, plans, plans, plans;
the gift a burden, a stone
in the belly where breath
and sun had been . . .
*
The day as gift, the day as burden;
Whose wish she woke with: bird's or man's
What could all that matter
After the shattering
(Shuddering)
She imagined?
And it was not the future
She so feared,
Nor was it the past,
But the world that waited
(Rowdy commerce
And loud
Clamoring)
Crouched, she would have said,
Crouched like some soul-
Hungry mechanical beast
Just outside her door,
A beast that would
(Of this she was quite sure),
Were she to rise
and take the staircase down . . .
*
Long since,
Her eyes have drained
The final dregs
Of color from the sky.
Inside the colors
Warmed her;
left her calm.
No,
She would not rise,
Would not go down,
But would remain
In the house of light,
Where birds chitter
And sing each morning,
Their passionate wish
Her wish.
Constance Merritt
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WHAT??? Department
Watch out for Mom
"I think Mr. Latimer was a man of mercy. If I had a suffering child I'd do the same thing he did. It's pretty sadistic to keep a child in that condition alive." Jean McNeely, 82, former editor of the Friends of the Disabled newsletter in Alberta, Canada, commenting on the protest by the Alberta Association for Community Inclusion. The AACL was working to get the Provincial Museum of Alberta to change its "Anno Domini" exhibit which featured a video based on Christ's Beatitudes, which cited Latimer in a section titled, "Blessed are the Merciful." Robert Latimer was convicted in 1997 of murdering his 12-year-old daughter, Tracy, who had cerebral palsy.
McNeely, who has a 43-year-old son with Down syndrome, told reporters she supports "mercy killing."
Better dead than disabled, no. 732
Joan answers the telephone, and it's an emergency room doctor. The doctor says, "Your husband was in a serious car accident, and I have bad news and good news. The bad news is he has lost all use of both arms and both legs, and will need help eating and going to the bathroom for the rest of his life."
Joan says, "My God. What's the good news?"
The doctor says, "I'm kidding. He's dead."
From the internet joke site HumorNetwork.com
Justice at work -- without a ramp
"But there might be a rational basis for refusing to hire a teacher who was in a wheelchair . . . if only that the school is not properly equipped to accommodate such a teacher." Supreme Court Justice Antonin Scalia, commenting during the oral arguments in the case Univ. of Alabama v. Garrett.
Why hesitate at one slur?
"Surely physical competition is about finding the best -- the fastest, strongest, highest, all that. It is not about finding someone who can wobble his way around a track in a wheelchair, or who can swim from one end of a pool to the other by Braille . . . It is time to suggest that these so-called Paralympics . . . are -- well, one hesitates to say 'grotesque'. One will only say 'perverse'." Mary Ellen Synon of the Dublin-based Sunday Independent -- one hesitates to call Synon a "journalist" -- writing in October about the Sydney games.
"Yet we are supposed to imagine that there is some kind of equivalence in value between what the cripples do and what the truly fastest, strongest, highest do," Synon continued. "There isn't."
Detachment
"I've become mentally detached from it." Clint Hallam, the New Zealander who underwent the world's first hand transplant, who now says he wants the limb amputated. "As it began to be rejected, I realized that it wasn't my hand after all," Hallam told The Times of London. "If this is what I'm going to have for the rest of my life, I'd rather not have it.''
"We gave him the chance of a lifetime and he ruined it,'' Surgeon Nadey Hakim of St. Mary's Hospital in London told The Times. "I feel sorry for him, for us and for everyone who gave him so much and then found he was such a bad example.
Disabled, as in 'can't work'
"Many fat people want to argue not that they are disabled, but that they are perfectly able to do the same work as thinner colleagues." New York Times reporter Carey Goldberg, in a Nov. 5 article about discrimination against fat people.
Blind, as in 'stupid'
"One would have to be blind not to see that we are being hoodwinked." Susan Baker of Louisville, in a letter to the Courier Journal complaining about post-election tactics of a Presidential candidate.
As well dead as disabled
"But it's a kid who's a paraplegic who's out there hunting, 'cause there's nothing that says back to the nature like a wheelchair in the brush." Bill Maher, host of ABC's 'Politically Incorrect.' "And this kid, like many like him, can go into the forest and he shoots by blowing into a tube, like, you know Christopher Reeve has that tube to -- so he's literally blowing away Bambi. Now, I have heard and seen a lot of twisted things in this twisted country, but this takes the gosh darn cake.
"Talk about drawing the line, why do you draw the line at just paraplegic hunters? Why not let the dead hunt? We could drop coffins from trees on a passing herd of elk"
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OASIS &
The 'Bath Aide'
by Adrienne Rubin Barhydt
Adrienne Rubin Barhydt is a freelance writer.
When I decided to have surgery to place a suprapubic catheter in my bladder I knew that I would need assistance every morning with many basic functions that the jargon calls ADLs or Activities of Daily Living.
I began to research what resources would be available to me as a Medicare recipient. I have a degree in economics and a master's degree in library science; I've worked as a reference librarian, a computer programmer and systems analyst. With more than 20 years' experience as an information professional, I have the knowledge and background to research things like Medicare regulations. So I did.
I found that under Medicare, I would be able to receive up to a total of 28 hours per week of "skilled nursing, physical and occupational therapy." Due to the fact that I needed a nurse to change my catheter once each month, I learned from the regulations, I was entitled under Medicare to also receive up to 28 hours per week of assistance from a "home health aide," as long as the catheter change was needed.
I have multiple sclerosis. What I can do, I do very slowly. I find even the simplest things exhausting. I need assistance with the things that I cannot do, including catheter care, dressing, range of motion exercises, transferring from my bed to my wheelchair and back to bed, preparing food. I need assistance to and from the toilet.
Although the regulations explained what I was entitled to, it was unclear to me how to arrange for these services.
First I phoned the local agency that assists Medicare recipients. Unfortunately, all they were able to do was to read me the same Medicare regulations that I had already found on my own.
After consulting with several of my doctors, I learned that the person to contact was the hospital's discharge planner. When I phoned the hospital and spoke to someone who said that was her role, she assured me that I would be able to get the services I needed, and that they would be able to make all the arrangements during my very brief visit to the hospital for the surgery.
While I was in the hospital, my husband and I met with two women who made the arrangements for my in-home services following my discharge. The agency they set me up with provided a nurse who handled the initial care of the surgical wound, a physical therapist and an occupational therapist. They told me that the agency would only be able to provide me with a home health aide (whom they referred to as a "bath aide") three mornings a week.
When I left the hospital, my husband and I believed that I would receive the services I needed three mornings a week and that we would have to provide for me in some other away for the rest of the week. I did not understand why I could receive the agency's services only three mornings a week when the Medicare regulations clearly allowed 28 hours of total services per week.
When I got home from the hospital and spoke further to the agency, it became less and less clear that they could even really provide the "aide" services I needed.
My husband was able to change his work schedule, though, and he handled my morning routine while we continued to discuss the situation with the agency. Yet in the end -- and it took a large number of phone calls to get to this -- in the end, the agency told us that the only assistance they would be able to provide was someone to give me a bath three times a week -- in the afternoons. This was of no use to me at all.
They stated quite clearly that they were not obligated to provided any more care.
I continued to do research, but could not honestly determine whether their Medicare certification did require them to provide more hours or not.
With the knowledge that I could have all of my Medicare services "transferred," I began calling other agencies. What I began to suspect was that there was no Medicare-certified agency in my geographic area that provided both the skilled nursing I would need once a month under the regulations, and the home health aide I would need daily.
A social worker from the agency I was using came to assist me with finding someone who would be able to provide all the services I needed. He called several of the same agencies that I had called on my own. He used my speakerphone, and I heard all of the discussions. Talking professional to professional, he was able to get information that none of the agencies would give me.
What we learned was that all of the large agencies that in the past had provided both skilled nursing services and home health aides had dropped the home health aide portion of their businesses because of the reporting requirements of the OASIS (Outcome Assessment Information System) and the lack of availability of people willing to work as aides. Although they never said so, I learned later that Medicare reimbursement rates figured largely in the agencies' decisions to drop the home health aide portion of their businesses.
The social worker was told that the smaller agencies that had picked up the business that the larger agencies dropped had all deliberately had themselves "decertified from Medicare." In short, the services that I needed -- and still need, and am entitled to under Medicare regulations -- is simply not available in the Portland, Oregon metropolitan area.
In one last attempt to find what I need, I phoned Medicare's Regional Home Health Intermediary for Oregon. I asked them if they could tell me of any agencies in the area providing skilled nursing and home health aides. They told me that they did not have such information, and I should consult the Yellow Pages of the phone book! Because the Regional Home Health Intermediary pays for home health care provided under Medicare, I find it hard to believe that they did not have the information.
Resigned now to the fact that I would not be able to use Medicare for any of the services I needed, I began calling agencies as a private-pay customer. The next lesson I learned was that almost all agencies have a three- or four-hour minimum for their aide services. I finally found an agency with a two-hour minimum, which is all that I need.
Our weekly cost, using this particular agency, was more than we could afford on a long-term basis; still, we decided to use the agency for one month.
During that time I learned still more. In five weeks I had four different aides, and had to train each one in how to perform my routine needs. In five weeks, I had two occasions on which the aide simply did not show up. Speaking to others since that time, I have learned that this is not an unusual occurrence. I began using a different agency, a nonprofit one; it charges considerably less but still more than is affordable.
It is clear now that the only way the services I need will be affordable over the long term will be for me to hire individuals to work for me directly, rather than hiring through an agency.
I began to research Medicare's reimbursement rates for agency-supplied home health aides. As a result of the Balanced Budget Act of 1997, all Medicare "home health" funding was cut, not just the part pertaining to home health aides.
I learned that the amount paid to an agency was " per visit" -- and that visit could be any length of time. It would make little sense to an agency to allow a worker to work for eight hours, when the agency would get the same reimbursement rate if the "visit" were only one hour. The rate paid is adjusted by some bizarre formula that takes into account location and other factors , but the numbers that popped up in examples seemed to put the rate at $36 to $48 per visit -- clearly not enough for an agency to break even, let alone make a profit on anything more than about an hour, given that they were also charging administrative overhead compounded by the workload of OASIS reporting.
But with $48 I could hire my current attendant on my own and have her for four hours a day.
I can see why the agencies have dropped the home health aide service, and why, in those cases where it is still provided, it is limited to a one-hour visit at the agency's convenience.
Still, I question the legality of this limit.
Medicare is paying to support a bureaucracy of intrusive paperwork and unneeded supervisors, rather than services to Medicare beneficiaries. The agency's reimbursement is not enough to pay for their bureaucratic overhead. Yet that figure is far more than it would cost a beneficiary to hire the aide directly.
Under the current system, Medicare beneficiaries have no control over who provides their services. They get fewer hours than they need. Most of us end up doing all the training of aides ourselves. Many of us simply don't receive the services we need and are entitled to under law -- we either pay for the services ourselves or do without.
One could argue that Medicare should pay agencies an amount large enough for them to afford to provide this service, as they did in the past. Based on my experience and what I have learned from others, though, I now believe this would be a step backwards. Instead of paying to support a useless bureaucracy, it would cost far less to provide the funding directly to beneficiaries for hiring their own attendant services. Independent living centers could be funded to enable them to enhance the work they are already doing in providing both aide referrals and training to clients in hiring and managing their own services.
You might suppose that Medicare certification is a guarantee of the quality of the services received, but from what I've been able to learn, that's simply not the case. Training requirements are minimal, workloads are far too high and turnover is rampant.
No matter the level of skill of the aide I've been sent from any agency, I have had to train each one in the specifics of what I need.
Nothing that I need done is difficult. What is essential is dependability and willingness to follow instructions and learn new routines. I can pay an agency outrageous rates and perhaps get this service; perhaps not. Or I can interview and screen someone myself, pay someone I choose a living wage and do at least as well, if not better, at getting what I need.
The disability rights movement often focuses on Medicaid, but the Medicare aspect of this situation reflects the tip of an iceberg. People on Medicare, people with multiple sclerosis and other disabling conditions who have worked and paid into Social Security, need assistance now -- assistance that can be difficult to find and unaffordable.
And much as they wish to deny it, the baby boomer generation is getting older. Soon many of them will need assistance, too.We need to find a way to make the services we need affordable, and pay the attendant a living wage as well.
I am still using the nonprofit agency two mornings a week. My attendant is excellent. But she tipped me off that the agency is very likely to go out of business in the next few months.
I had another attendant -- one I hired myself -- who came one morning a week and weekends, so my husband could have a break once in awhile. But she moved to Alaska yesterday.
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A former college professor of political science with MS tells her experiences
To end aide shortage, improve pay and status
by Sue Rhodes
Sue Rhodes serves on the Portland Metropolitan Human Rights Commission's City/County Advisory Committee on Disability and am also a member of ADAPT.
Even during a period with a much higher unemployment rate than the nation is currently experiencing, in a college town where there was generally an adequate labor supply, the low wages, poor benefits and lack of respect associated with "home health care" occupations made it very difficult to hire good people for these jobs.
The first "bath aide" who came to work with me, provided by the only home health care agency in Bloomington, Indiana, stole and attempted to cash a $900 check. She was apprehended and later prosecuted and convicted for the crime. The agency had continual trouble finding an aide physically able to do what I needed done; I was dropped and mishandled a number of times.
In 1995 I moved to Portland, Oregon.
I have been the client of six different home health care providers. All have either stopped providing the type of service I need or have completely gone out of business. On my own, I have hired at least eight different individuals, some competent, some incompetent and unreliable. I am currently lucky enough to have an excellent PCA, whom I employ privately.
I have private health insurance; I am not on Medicare or Medicaid. My insurance covers a certain number of visits by a home health aide each calendar year, but I am currently paying for the service myself because I am unable to find an appropriate provider whose services would be covered by my insurer.
In-home services are much less expensive than institutionalization, and it enables recipients to have a much higher quality of life. It is crucial that the U.S. invest in building a strong in-home services infrastructure by improving the pay and status of workers in this industry.
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Empowering
Service
Delivery
Adrienne Barhydt writes, "Instead of paying to support a useless bureaucracy, it would cost far less to provide the funding directly to beneficiaries for hiring their own attendant services. Independent living centers could be funded to enable them to enhance the work they are already doing in providing both aide referrals and training to clients in hiring and managing their own attendant services." That's been proposed before.
In his article, "Empowering Service Delivery" in the September/October, 1998 Ragged Edge, ADAPT's Bob Kafka says, "People with disabilities should take over the pieces of the health care delivery system that for years have controlled our lives. Independent living centers should become delivers of personal attendant services.
If a person with a disability calls up an independent living center today and wants to get out of an institution, what can the majority of them offer? Classes? Information and referral? Peer counseling?
"To begin the process of becoming independent, that person first needs to be able to get out of the institution. Getting someone out of an institutionor keep someone outis truly what the independent living movement is about."
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Is your Medicare agency cutting you off?
Each year, the Center for Medical Advocacy assists thousands of individuals in appeals of Medicare denials, particularly for home health care.
Staffed by attorneys and paralegals, the Center's advice, written materials and legal services are free to Connecticut residents and are available for a fee to others.
When Ragged Edge was going to press, the Center was looking for Medicare home health beneficiaries "with large supply needs (i.e.,wound care patients) that are being told their home health benefits will be reduced or terminated because they are too costly to serve."
Contact the Center in Connecticut at (860) 456-7790, or in Washington, D.C. at (202) 216-0028, or online at www.medicareadvocacy.org
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Reading Department: Book Reviews:
Airing the 'disability perspective' but getting few converts
A review by Mary Johnson. Mary Johnson is Editor of Ragged Edge magazine.
Prenatal Testing and Disability Rights Edited by Erik Parens and Adrienne Asch. Washington, D.C.: Georgetown University Press. 352 pages. Paperback. $29.95.
Their picture is of a line of babies waiting to be born, and a quality control officer coming along and throwing 'people like them' out of the line so they never make it to earth. My picture is of a 'disembodied soul,' the sense of my yet-to-be-born child, waiting to be inserted into a baby-shaped container, with me standing there to make sure my child's soul gets into a well-functioning container."
Mary Ann Baily, a fellow at the AMA Institute for Ethics, admits that what she has said is "utter nonsense from the scientific point of view." Yet her description is a good way to understand the split that exists between those who see prenatal screening for "defects" as wrong, and those who welcome it as an unmitigated good. We get both views -- all their varying manifestations -- in "Prenatal Testing and Disability Rights."
Does prenatal testing for genetic defects "send a message" to disabled people? Adrienne Asch, the Henry L. Luce Professor of Biology, Ethics and Reproduction at Wellesley College, insists that it does. For two years, Asch and Hastings Center bioethicist Eric Parens engaged a group of scholars, philosophers, ethicists, biologists, physicians, sociologists and educators under the auspices of the Hastings Center to grapple with that question, and the disability rights perspective on prenatal testing in general. This book is the product of that project.
After listening to all the opinions expressed by project members, Asch writes in an essay late in the book that she has not changed her mind. She says that people who choose to abort based on a diagnosis of disability are "allowing a single trait to stand in for the whole, to obliterate the whole."
People like Baily -- and they are in the large majority in society -- simply do not believe that aborting a fetus because it will likely have a disability "sends a message" that is bigoted; most do not believe that it sends any message at all. Many do not agree that the provision of more accurate information about disabilities or about living with particular disabilities would make any great difference in their decision to abort a fetus they feared carried a "defect." Even knowing about disabled people and their lives, she would still not want to bear a disabled child if it could be avoided, says Baily. Nor do they buy the "any/particular" distinction articulated by Asch, who has been writing about the disability perspective on reproductive choice for decades.
The "any/particular distinction" refers to the difference between the decision to simply not have any child at all at the time -- the decision of someone who becomes pregnant when they were not planning a family and thus seeks an abortion, for example -- and the decision to abort a particular fetus, even when the woman in fact wants a child, when prenatal testing has revealed disability in the fetus.
The project, funded in part by a grant from the National Institute on Disability and Rehabilitation Research, did not reach unanimity on any of the "major claims" of the disability rights movement -- not after five intense two-day intense meetings, not despite ongoing email correspondence among participants, notwithstanding meetings with members of the Society for Disability Studies.
So are we simply at that juncture in history in which almost no one outside one's tiny community of thought believes one's critique; before one's ideas are accepted? Is this what it was like in the 1800s to hear perfectly nice, logical people say things which we now we see as hopelessly racist? It's hard to tell.
This is an important, though academic, book. It lays out both the disability rights critique from Asch, Marsha Saxton and others, and the reasons why people just don't "buy" the argument that life with a disability is alright, which is really what it comes right down to.
"Using prenatal tests to prevent the births of babies with disabilities seems to be self-evidently good to many people," Asch writes. No matter that critics argue that these beliefs stem from unexamined attitudes about disability; this project shows that when the attitudes are examined they are often found to be fine attitudes -- by those who hold them.
In her piercingly honest essay "Somewhere A Mockingbird" (which also appeared in the anthology Bigger Than The Sky: Disabled Women on Parenting (Ragged Edge, Jan./ Feb. 2000), Deborah Kent reports what happens when she and her husband begin to plan having a child, knowing it may be born with Kent's genetic blindness: Despite the closeness of the couple, writes Kent, she had failed to convince her husband, even after their years together, "that it is really okay to be blind."
"I will always believe that blindness is a neutral trait, neither to be prized nor shunned. Very few people, including those dearest to me, share that conviction... They cannot fully relinquish their negative assumptions...."
"Though they dread blindness as a fate to be avoided at almost any cost," she writes of her family and friends, "they give me their trust and respect. I don't understand how they live without discomfort amid such contradictions."(emphasis ours.) Yet many of the project's participants live with this contradiction seemingly quite well and without question.
If there is a theme to be taken away from this volume, it is that society can quite easily live without examining such contradictions. In one of the most sobering essays in the book, Nancy Press writes that "certain silences in the public discourse have actually enabled the routinization and rapid growth of prenatal testing,.... by obscuring or limiting the need for public debate about two topics about which Americans are deeply conflicted but which lie at the heart of prenatal testing: abortion and disability."
This book arrives at a time in our society when prenatal testing is becoming routine -- and a duty. As tests for finding ever more genetic traits and predispositions become ever easier to administer, our country's legal hubris being what it is, women will be told to get them done, or else.
Sociologist Dorothy Wertz contends that "even if some lines might be drawn in practice they will not make a difference since market and political forces will determine which prenatal tests are offered and in what kind of an atmosphere they will be offered." Biologist Pilar Ossorio points out that "when prenatal tests become part of routine [medical] practice, courts will find that physicians have a duty to offer them."
Detailing the strange and horrific outcome, today's "wrongful birth" and "wrongful life" lawsuits (in which the disabled child argues before the court "that her life is worse than non-existence"), Ossorio's chapter is a sober reminder of the road we head down when we reject the disability rights critique of prenatal testing.
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No consensus
Given the controversial nature of the subject and the diversity within our working group, it is not surprising that we could not reach consensus about all of the questions we discussed. We did not achieve unanimity on the major claims of the disability perspective -- most specifically, that prenatal diagnosis is based on either morally problematic views about desirable parental attitudes and morally questionable views about people with disabilities, or on misinformation about the nature and consequences of disability.
We did not reach consensus about what weigh to give or how best to use the disability arguments about prenatal genetic testing in making public policy. Nor did we concur more specifically about whether it is wise public policy to draw lines between reasonable and unreasonable tests.
Nonetheless, our project achieved two important aims: First, we aired and seriously considered the concerns of the disability community. Second, to the extent that we achieved consensus about the merits of some of its claims, we recommended changes to ameliorate some of the problems associated with the customary ways of providing prenatal testing.
-- from the Introduction, Prenatal Testing and Disability Rights, Edited by Erik Parens and Adrienne Asch
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Conflicted
In what has to be one of the most fascinating reports yet of true mainstream attitudes about disability, Oregon Health Sciences University's Nancy Press discusses data she and a colleague collected through interviews with a group of pregnant women who had no real likelihood of bearing a child with a disability but who had nonetheless all been offered prenatal screening.
The women were asked about "their images of disability and their attitudes toward being a child with a disability" -- two very different things, as it turned out.
"Striking discontinuities were seen," writes Press, between the "upbeat, strongly positive and almost romanticized attitudes" the women expressed when asked in general about "people with disabilities" and the extremely fearful and negative attitudes they exhibited when asked how they would feel if they bore a child with a disability.
When asked in general about their "attitudes about people with disabilities," many referred to people as "triumphing," as Press puts it; the women brought up things like the TV series Life Goes On. When questioned about bearing a disabled child, though, responses changed dramatically. A woman who had told Press that "handicapped children were the most beautiful beings in the world" said that if a child born to her had a disability she would 'cry.'" The result of the interviews, writes Press, showed "a dynamic and somewhat confused mix of old images of mental retardation and incapacity juxtaposed with new images of different but 'special' children" -- and absolutely no way to sort them out.
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'Wrongful life'
France's highest court ruled in November that 17-year-old Nicholas Perruche could demand compensation for having been born -- the 'wrongful life" case argued that doctors should have prevented his birth, but that a medical laboratory had failed to diagnose his mother's rubella and advise abortion.
The public prosecutor, arguing against the ruling, had said that paying damages to Nicholas and his family would "amount to deciding that some lives were not worth living."
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Adam's angels
a review by Lisa Blumberg
Lisa Blumberg writes about eugenics issues.
Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic, by Martha Beck. New York: Berkley Books. 328 pages, Paperback. $13.95.
In l987, Martha and John Beck were doctoral candidates at Harvard. Driven to excel, they were eager to be everything they thought Harvard wanted them to be. Classes, dissertations and teaching duties kept them always busy; they traded off toddler Katie from one to the other between classes, often making the switch several times a day. Then John takes a consulting job that requires constant commuting to Asia.
It is not the right time for another child. Yet when Martha learns that she is pregnant, she realizes she wants the baby.
Although only 25, she is urged to have amniocentesis when a blood test indicates there's a one in 895 chance her fetus has Down syndrome. Pro-choice Martha finds she's pressured to think of abortion starting even before prenatal diagnosis: Hurry and have the testing done so there will still be time to terminate, her nurse practitioner tells her.
Amniocentesis shows that Martha is indeed carrying a Down syndrome fetus; and when, despite her fears and prejudices and the misinformation she has been given (her nurse practitioner warns they'll never get a babysitter), she decides to continue the pregnancy, she crosses a line and becomes too pro-choice for Harvard. "The doctors I would interact with," writes Beck, "would have considered it wiser to do away with the baby they were helping me protect."
Before the pregnancy has come to term, the Becks will have angered John's faculty adviser, ruffled the students in Martha's Sociology of Gender class and defied most of the obstetricians at Harvard University Health Services, including the eminent and appropriately dubbed "Dr. Grendel," who compares the fetus to a malignant tumor. During delivery, she feels that the somber and regretful medical team attending the birth "would have rather have delivered Adam dead than alive."
Back in class, carrying Adam in a baby pack, Martha Beck gets no congratulations from student or teacher on his safe arrival. Six months later, the Becks abandon Harvard for a university in the West, on the road to a calmer, more grounded lifestyle.
As an account of the ferocious community pressure placed on a young couple to do away with a fetus deemed "a detriment to society," Expecting Adam raises valuable points. But using a child's disability to explain why two academic whizzes ended up in Phoenix, Arizona smelling the flowers makes Beck's book preachy and saccharine.
An engaging read about engaging people, Expecting Adam falters in trying to cover too many themes. Beck wants to debunk the myth of perfection at Harvard, describe the pressure placed on women to make certain choices, show that a family with a disabled child can be a happy family and suggest that there are angels among us.
The angel agenda wins out. Coping with constant nausea, with John away more than at home, Beck is sustained during pregnancy by what she comes to think of as ethereal beings, crediting them with giving her the resolve to trust her own judgment. While she acknowledges the beings may be imaginary ("It makes good sense to me that the human brain would cook up a few reassuring fantasies in conditions of extreme duress," she writes), there's a supernatural gloss to the book, with Beck implying that Adam is a magnet for angels.
Martha Beck is not quite the protagonist I would have liked. Adam clearly has been integrated into the Beck family, which now includes three children, and some of her stories about him are funny, such as when Adam puts one over on a psychologist giving him innumerable tests. But others are mawkish and sentimental -- Adam refuses the chance to buy candy so he can buy a flower to present to his mother with his first spoken word. Beck refers to him as "retarded" a little too much; and there is nothing in the book to indicate Beck fully realizes that Adam may someday chart his own course as her daughters will.
Beck, who lets us know that she is of pioneer stock and sees herself as a pioneer here, too, doesn't seem to realize she could benefit from native guides on the new frontier. Though published in 1999, the book seems dated. Since Adam was small, Beck has lectured on medical ethics. But she gives no indication she's aware of work done by women with disabilities on the topic. She seems strangely naive about why pre-natal testing was developed. Expecting Adam, with its intermittent focus on angels, does not deal as much as it should about the earthly concerns generated by prenatal diagnosis, for women or for people with disabilities. n
Voices past and present
A review by Sally Rosenthal
Sally Rosenthal reviews books frequently for Ragged Edge.
The Little Locksmith: A Memoir by Katharine Butler Hathaway. New York: The Feminist Press, 2000. Softcover, 258 pages, $14.95.
Life Prints: A Memoir Of Healing And Discovery by Mary Grimley Mason. New York: The Feminist Press, 2000. Hardcover, 223 pages, $19.95.
Confession, as the saying goes, is good for the soul. The American public, disabled and nondisabled alike, seems to have embraced that edict, as a trip to any bookstore or library will confirm. Everyone has a story to tell.
But which of these stories will last? What books will stand the test of time to become classics? Which memoirs will, however good, go out of print and be lost to readers? Does this dilemma have even more relevance for tales by disabled authors, denied a voice more often than their nondisabled counterparts?
I found myself pondering these questions recently when I received the two books reviewed here. The Little Locksmith, by Katharine Butler Hathaway, was rescued from obscurity by The Feminist Press and hailed as a lost classic of disability. Life Prints, by Mary Grimley Mason, seeks to preserve the life experiences of a contemporary writer.
What do each of these women have to tell modern readers about living as women with disabilities in different parts of the 1900s? Are their voices, disabled and feminist, more likely to be heard and acknowledged today, assuring that their books will be available for future generations?
The Little Locksmith is a curious book. First published in 1943 just after the author's death, it was a bestseller. Yet, as Nancy Mairs writes in an afterword, less than 60 years later it would seem as if the book had never existed. Mairs, a feminist scholar and disabled writer, admits to having never even come across so much as a footnote about The Little Locksmith. Its current rebirth is due to another feminist writer, Alix Kates Shulman, who discovered a copy in a used bookstore and promoted its republication.
So, what is it about this work that both caused it to fade into obscurity and now to be praised so highly as a lost classic of early 20th century disability experience?
The answer, I believe, lies in the fact that it is a book about being a disabled woman. Its popularity was no doubt due as much to the reading public's fascination about the author herself as to the elegantly simple prose. At the age of five, Hathaway developed a tubercular spinal tumor. For the next 10 years, in accordance with the best medical treatment of the day, she was strapped to a table in order to prevent kyphosis (more commonly referred to, at the time, as hunchback.)
During her confinement, Hathaway sometimes watched the kyphotic locksmith as he came to work at her home, feeling both revulsion and kinship. When, at fifteen, she was allowed to stand up, she discovered that her sense of kinship had been appropriate: Despite her "treatment," she, like the locksmith, had become kyphotic.
The memoir that emerges from her experience is a singularly prosaic work that combines a sense of otherworldliness with spirited rebellion. The author's descriptions of medical treatment, family dynamics and societal discrimination have the ring of truth about them for any time, yet The Little Locksmith is steeped in its era with its isolation and lack of support for the author. Realizing that a disabled woman could fit nowhere into the world around her, Hathaway forged her own identity as a creative person and free spirit. Buying a house on the Maine coast with a financial inheritance, she lived alone there before joining a group of American expatriate artists in Europe.
The Little Locksmith was actually only the initial work that Hathaway had planned to write about her life after returning to America, marrying, and embracing a spirituality-based lifestyle. But, due to her early death, The Little Locksmith remains her only published book. Despite its popularity, it failed to remain in print or become part of the body of feminist academic writings that emerged from women's studies programs. Were it not for Shulman's discovering the book, Hathaway's life and art might have been just a flash in the pan, a curiosity that engaged the public for a short period of time. And, indeed, other than Helen Keller's autobiography, I can think of no other memoir of feminine disability in existence from that time. Perhaps, like The Little Locksmith, they remain waiting to be rediscovered.
The Little Locksmith tells the story of an early 20th-century life; Life Prints by Mary Grimley Mason progresses through the 1900s. Mason also became disabled as a young child and entered upon a long period of medical treatment designed to return her to "normalcy." In Mason's case, the disability was polio -- she was the nation's first "poster child," dining with President Roosevelt at the Warm Springs rehabilitation center and posing in her wheelchair for publicity shots. The rehabilitation she received at Warm Springs, Georgia, like Hathaway's table confinement, never yielded the hoped-for results.
Like Katherine Butler Hathaway's, Mason's life too had its sense of isolation. Despite marriage, parenthood, and an academic career, Mason always felt set apart as a disabled woman. As did many polio survivors, Mason lived her life on two levels -- the rehabilitated overcomer striving to be "normal," and the real person underneath left to the isolation of disability.
Mason's growing awareness over the years of the feminist movement eventually led her, in 1990, to attend her first disability rights movement meeting. In her memoir, Mason acknowledges her identity as a disabled feminist, even though most of the book deals with her life prior to 1990. The more recent part of her life, as a single parent, cancer survivor and aging disabled woman, receives far shorter treatment than her earlier, more traditional life. Mason appears to have led a well-rounded life and grown comfortably into her current role as a disabled feminist, proud of both parts of her identity. I would like to have known more about her recent life, but that might be my own bias. After all, the story is Mason's, and, if, as a 72-year-old polio survivor, she wants to reflect more on the past than the present, the choice is hers.
Hathaway and Mason believed in the worth and value of their lives, even though they lived in a society that discounted them as disabled women. The Little Locksmith and Life Prints are vital links across generations of disabled women, encouraging others to also tell their unique stories, to ensure that disabled women's voices never be stilled.
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The Media Edge Department.
Those few wonderful months when disability issues were news
by Mary Johnson. Mary Johnson is Editor of Ragged Edge magazine.
Half The Planet. We Media. Access Life. I Can Online. Names dreamed up by marketers or parsed out on the backs of envelopes, they were the "supersites" -- the websites that got the tens, the fifty millions of dollars or more in venture capital, all on the sweet hope that the Internet was really the village without barriers, where crips and friends of crips, families of crips and crips who had never heard of ADAPT or Mouth or Ragged Edge -- or the Americans with Disabilities Act, for that matter -- would come and browse and buy products.
Especially buy products. Wheelchairs. Screen readers. Catheter supplies. On this floated the hopes of an increasing group of entrepreneurs.
It seemed like such a good idea; such a sensible idea. Crips had money to spend, too. They could spend it on the Internet as well as the next guy. And it would be so easy for crips, too -- no need to get out of the house, into the van or find an accessible bus, go to a store that might or might not have what you wanted -- one you might or might not be able to get into; no need to worry that a sales clerk couldn't understand ASL. Not to worry: the global village for the crip was now online.
The Wall Street Journal trumpeted it as "handicapitalism." "These people are here," wemedia.com president Cary Fields insisted to The Wall Street Journal's Joshua Prager just a year ago. Wemedia.com was running ads in the likes of the New York Times, crowing that the "disability market" had "$1 trillion in consolidated buying power." Maybe, maybe not. But it sounded good. And it drew the venture capitalists like vultures, which was, of course, precisely what it was intended to do.
The sites were called, in the self-inflated jargon of the Internet, "web portals." Heidi Van Arnem, head of icanonline.com, was quoted in the New York Times: Ican would "partner" with grocery delivery sites, restaurant delivery sites, real estate firms, the Brave New World of Online Everything Delivered.
In order to create interest for visitors, so they'd remain on the site long enough to wander around and buy something, the sites had to have "content" -- something that in pre-Internet days used to be called writing and reporting.
And so, because the conventional Internet wisdom decreed that sites had to have content, and because the sites had millions to spend, the supersites began covering the disability rights movement. For it, indeed, could provide them with all the "content" they needed.
And so they reported. They covered events. They sent entire news teams to cover events. News teams! At the ceremonies at the FDR memorial during that week of events in Washington in late July that marked the 10th anniversary of the signing of the Americans with Disabilities Act, the "media tent" for once actually had "media" in it -- not just one or two stringers, but entire crews of people, with vans, tape recorders and cameras. Real media, treating the event as real news.
A news team from I Can Online had outfitted a van and followed the ADA Torch Relay across the nation. The Torch Relay was news because the disability megasites treated it as news.
This, of course, is no different than any event that becomes news or even super news: would Elian Gonzales have been news, have remained news, week after week after week after week, had no televisions stations provided coverage?
The Torch Relay was tailor-made to provide "content" for the websites; and the websites had enough money to hire people who actually had backgrounds in news reporting to treat this not that far differently than the reporters from the newspapers in the 1960s that covered civil rights issues in the South. No; this was celebratory, not dangerous. There were no firehoses or Klu Klux Klan robes; there crips running and wheeling with an Olympics-style torch and making speeches. It was the 00s, not the 60s. But the coverage was just as real. It existed not in the pages of the Charlotte Observer or the Nashville Tennessean but on websites. But it read as real news, the same as real news always reads.
The websites reported on the Clinton ADA Anniversary speech. They reported on the White House's disability initiatives announced in late July. When the Bush campaign announced its own proposals, they reported those, too. Macy's dept. store was sued for access; it was reported on the websites. Clicking around the web from halftheplanet.com to icanonline.com to accesslife.com, one could almost believe that the disability movement, its ideas and opinions, had finally begun to get the kind of coverage many of us had long hoped for but believed would never happen. Real news, breaking news, ongoing news, news that was followed up with more news.
The sites were reporting news, offering commentary, treating disabled people as a real audience. There were stories on lawsuits and interviews with the lawyers. There were articles about web access, articles about the Supreme Court and disability rights. There were reports on Harris polls done by the National Organization on Disability. There were articles about employment problems; access problems. There were features and profiles and movie reviews and book reviews and sports coverage.
If a little voice in the back of one's head suggested that the stories would exist only so long as the websites could attract the millions of dollars in venture capital that paid their staffs, it was easy to ignore the voice. After all, wemedia.com had told the Wall Street Journal the crip market was a trillion dollar mecca. Who worried?
Well, plenty of people worried behind the scenes. A report from the Disability Statistics Center noted that people with disabilities in general were far less likely to go online -- or to even have computers, for that matter -- than the general public. A warring study, done for halftheplanet.com about the same time, reported that in fact disabled people were online more than nondisabled people. One didn't know what to believe. But the highly-guarded proprietary website traffic statistics were telling their own truths.
After the breaking-news pace of those heady days surrounding the ADA anniversary, it wasn't surprising that coverage had slowed, particularly in the always-slow-news month of August. But as summer turned into fall, a careful observer would notice that website "front pages" were changing less often; fewer new stories were appearing. Wemedia.com, with the deepest pockets of all, had moved to become the "official" webcaster of the Sydney Paralymics, with streaming video that relatively few crips could access, given the high costs of high-speed access. Other sites covered the Paralymics, too -- but the frenzy was slowing.
As fall moved toward winter, the Internet chill that was cooling the e-commerce frenzy could clearly be felt. News stories, a necessity to "build traffic" and provide "stickiness" to web pages, were being jettisoned for a harder sell. Sites like cando.com changed their look -- now they clearly looked like online product pushers; news was secondary. There seemed to be a kind of desperation as sites tried to prove to venture capitalists that they would indeed make profits from selling those bath chairs and voice-input systems.
Signs of trouble were apparent to those who looked. Despite the brave front pages of the sites, a click to most of their discussion forums showed the real story: just one or two postings; on a hot topic maybe a dozen or two, no more. People, it seemed, simply weren't using the sites as places to visit with friends -- not in the numbers that had come to matter on the Internet, where success was measured in millions of visitors, not the hundreds that most of the sites were, in truth, getting.
Despite broad smiles at July's Washington galas, website executives had known the party was almost over. Staff was cut, cut, and cut again. The terms one heard were "reorganization" and "re-focus," but the terms fooled no one.
The Nasdaq tumbled in the fall, and sites tumbled with it. Halftheplanet.com, bleeding staff for months, laid off its last few dozen. Although its website remained, president Patricia Vance told reporters the venture had not been able to secure a new round of capital. Like many Internet start-ups, halftheplanet.com executives had bragged about their "burn rate" -- indeed, they had run through millions of dollars in mere months.
KTV.com, website of the Kaleidoscope TV network started years ago for the Deaf community, laid off the rest of its staff about that time too; in early December, bankruptcy notices were mailed to creditors.
Like ghost towns, the sites remained -- it's dirt cheap to keep a site online -- and only repeat visits and a careful eye would clue the visitor to the fact that nobody was home anymore. Some would continue with skeleton staffs; others would simply remain, the online equivalent of an abandoned house, broken shutters flapping in the wind.
Just a year earlier, Cheryl Duke, president of W.C. Duke Associates Inc., a disability-consulting firm in Woodford, VA, had bragged to The Wall Street Journal that "targeting disabled people for purely altruistic reasons" wasn't going to bring any "return on investment."
"If you do it because it's a moneymaking project, it will continue," she said. And if it isn't, she should have added, it won't. zzz
Side Bar:
Reporting the ADA anniversary
During a few short weeks in July it seemed that much of the nation's mass media was covering disability rights as a real news story. The occasion was the 10th anniversary of the signing of the Americans with Disabilities Act, and the nation's media really did take notice. There were good, substantive stories in most all the major papers, and on their news websites as well. "Collecting on a Promise: Disabled say they are still in fight for rights 10 years after disabilities act," ran the headline in the July 26 San Francisco Examiner. That same day, the anniversary of the ADA, similar stories ran in the New York Times, The Washington Post and many other papers; CNN and ABC TV did specials (for a list of stories, visit www.raggededgemagazine.com/mediacircus/annivnews.htm).
A Washington Post online photo gallery feature on ADAPT is still there at www.washingtonpost.com/wp-srv/photo/onassignment/adapt/intro.htm -- although it is marred by the lack of access to blind people, and oddly set off the day we wrote this story by an ad for cosmetic surgery.
M.J.
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Side bar:
'Drooling, misshapen husk of former self'
Nike ad causes furor
The ad, for the Nike "Air Dri-Goat" running shoe, read, in part, "How can a trail running shoe with an outer sole designed like a goat's hoof help me avoid compressing my spinal cord into a Slinky on the side of some unsuspecting conifer, thereby rendering me a drooling, misshapen non-extreme-trail-running husk of my former self, forced to roam the earth in a motorized wheelchair with my name embossed on one of those cute little license plates you get at carnivals or state fairs, fastened to the back?"
Responding to a flood of emails and calls from outraged readers in October, Nike issued an apology ("That ad should never have been approved, much less written, and we are examining our internal approval system to make sure such a mistake does not happen again. We offer a sincere apology" ) and pulled the offensive ad from future issues of outdoors magazines; unfortunately, the ad did appear in a number of publications this fall.
More about the Nike Dri-Goat controversy can be found online at our website. Go to www.raggededgemagazine.com/extra/nikead.htm
zzz
"Over the edge" Department.
CripCam Survivor
By Bob Mauro
Bob Mauro's latest book is The Landscape of My Disability. Visit his website at http://idt.net/~mauro
I've finally found a way we folks with disabilities can eliminate disability discrimination. It hit me while watching "Survivor."
My idea would put us before millions of nondisabled Internet users and TV couch potatoes. It would show exactly what it's like to be disabled: CripCam Survivor!
We won't need to be castaways on some desert island in the middle of the South Pacific with nothing to eat but rats. We won't even need to be locked in some big made-for-TV house on some studio lot with Big Brother watching our every move. All we need is a small digital video cam mounted on our wheelchair and a few "CripCams" around our home.
We'll put some CripCams in our offices, and mount several in an "accessible" restroom in a suburban shopping mall or federal office building.
Imagine yourself a member of the CripTribe
DAY 1: TIME TO GET UP: Once again your PCA hasn't arrived. Your bedroom CripCam scans you trapped in bed. Your alarm clock is going off. It's 6 A.M., so you still have plenty of time to get up, take a shower, eat breakfast and get to work -- that is, you would have enough time if your PCA had arrived on time. But your PCA is nowhere in sight.
DAY 2 THE NEW JOB INTERVIEW: You've applied for a job with large corporation. It's "totally accessible," says the human resources person. When you get to corporate headquarters, your wheelchair-mounted CripCam shows that there are 37 steps to the entrance. There is no curb cut, no ramp and no accessible entrance. You and your 120-pound motorized wheelchair are required to use the freight elevator, which smells like a dead person (Is this where they buried Jimmy Hoffa??).
Before the actual interview, you need to use the firm's "accessible" restroom. The first thing your CripCam notices is that the door to the "accessible" restroom is too narrow for your power chair. The next thing your CripCam picks up is your urinal. Then the TV station breaks for a commercial. It's the one for adult diapers. (If viewers simply click on www.CripCamSurvivor.com and type in any major credit card number, they can see you live via the Internet actually using your own urinal and cursing loudly about so-called "access".)
DAY 3 YOU DECIDE TO SHOP WITH YOUR PCA: After you've purchased several new outfits for your new job and filed that ADA grievance, you're at the checkout. The salesperson ignores you and talks to your PCA. You conveniently forget you're on national TV and the Internet -- being viewed live by millions. You run over the salesperson's toes with your new 320-pound motorized wheelchair.
Finally, the salesperson notices you. You smile for the CripCam.
DAY 4 YOU HAVEN'T BEEN ELIMINATED YET from "CripCam Survivor." You're about to attempt to go out for a night of unbridled sex with your newest lover. She'll meet you after work at the local "Love Motel with Cable and Jacuzzi." Your only job now is to get to your rendezvous on time.
You decide to take the "accessible" lift-equipped city bus. The first one passes without stopping. The second has no working lift. The third has a working lift, but a driver who can't work it. The fourth "accessible" lift-equipped city bus picks you up. But you can't exit once you reach the transfer point in your love journey; the bus's lift has malfunctioned.
The driver calls 911. The police, the fire department, and several EMTs arrive within the hour. They and the driver stand around looking at you and your 320-pound power chair as they scratch their heads. Finally, a guy with a forklift just happens by and helps you and your 320-pound motorized wheelchair out of the bus. You manage to find another "accessible," lift-equipped city bus, but by the time you reach the "Love Motel with Cable and Jacuzzi," your new lover has gone, leaving an angry note.
DAY 5 (the final day) YOU HAVE TO EAT A DEAD RAT: That's the easiest feat for you so far. After all, you're a survivor!
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0101edgetext. mary johnson mary johnson