Electric EDGE
Web Edition of
The Ragged Edge
July/August 1997

Electric Edge

Blank space
Disability not a real culture, say critics
Tenure battle questions legitimacy
of disability studies

Rosemarie Thomson, a professor of English at Howard University with a background in American literature and culture, is well known and respected in disability studies. She's up for tenure. Both the Chair of the English Department and the Dean of the College of Arts and Sciences at Howard University have withheld endorsement of her tenure application.

Disability culture activists believe it's because her field is "disability studies." Thomson says those opposed to her tenure assert that her disability studies work "does not adhere to the mission of the English Department."

This dismissal of disability studies "echoes the unwillingness within the last two decades of some English departments to recognize African- American and women's studies as legitimate fields of inquiry," says Thomson -- ironic because Howard University is an African-American university and the chair of its English Department is African- American.

"No question has been raised about the quality or quantity of my research, publication, teaching, service, or professional development," notes Thomson. Indeed, both the College's and the English Department's Appointments, Promotion, and Tenure (APT) Committees voted in favor of Thomson's tenure application -- in her department, the vote was unanimous.


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Thomson's work with disability studies has put her on committees of major professional organizations such as the Modern Language Association and the American Studies Association.; her work has gotten her National Endowment for the Humanities and the Mellon Foundation grants. Her anthology on freak shows, Freakery: Cultural Spectacles of the Extraordinary Body, was published by NYU Press last year. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature, was issued this year by Columbia University Press. Thomson says objection to her tenure and promotion is "based solely on the fact that my area of research is disability studies."

Dr. Eleanor Traylor, Chair of the English Department, states in her letter that "African-American literature is a positive cultural product, rich in diversity." About disabilities studies, Traylor writes, "It seems questionable that there can be documented and evidently parallel culture of the disabled that is as extensive."

Thomson's application is now in the hands of Howard Provost Dr. Antoine Garibaldi. Her cause has generated nearly 50 letters of support from colleagues nationwide who are urging Garibaldi to recommend tenure for Thomson and arguing the legitimacy of disability studies as a "real" field of study.

ADAPT spends time in nation's capital
'Where's Newt?'
on attendant services

When Ragged Edge hits your mailbox, ADAPT will be in Washington, DC. Disability rights activists from many groups will be converging in Washington, D.C. all during June, says Mark Johnson from Atlanta. Most, but not all, will be wearing the ADAPT hat -- American Disabled for Attendant Programs Today.

There are lots of targets. "We figure people from all over the country can keep coming into D.C., stretch the protests out," says Johnson.

The main target is Newt Gingrich. "What happened to the Community Attendant Services Act?" asks Johnson. "Since 1994 Newt Gingrich has talked of his support for a national attendant services program based on ADAPT's CASA bill, yet once again the Speaker seems to have grown fainthearted in the face of his adversaries."

Despite repeated promises, Gingrich has yet to introduce a national attendant services bill. When activists saw a draft piece of legislation earlier this year, they were horrified to learn that, despite promises to the contrary, the bill would be only for "pilot" programs -- in no more than 10 states. And it would budget only a fraction of the $2 billion ADAPT says is needed for a meaningful program. ADAPT has continuously stressed that this money is to be "redirected" from the pot that currently is used to pay for people in nursing homes. "No new money!" has been the cry of ADAPT since 1990.

ADAPT wants folks to put the heat on Gingrich to "live up to his November 4, 1996 written commitment to us." They provided these numbers for contacting him:

DC office phone: 202/225-4501
DC office fax: 202/225-4656
e-mail: georgia6@hr.house.gov
Georgia district office phone: 770/565-6849
District office fax: 770/565-6824

In late May ADAPT sent yet another letter to Gingrich asking about the legislation. ADAPT's proposals, the letter reminded the Speaker, "Would cost the federal government and states no new money bout would allow individuals . . . currently in nursing homes and institutions the choice to move into the community utilizing existing funds." Gingrich's failure to respond to this point, the letter said, "leads us to believe you may be unduly influenced by the institutional providers and advocates."

When Ragged Edge went to press, Gingrich had still not formally responded, although questions to him in late May indicated the Speaker was still thinking in terms of only a pilot program in a few states. The Clinton Administration as been no better. Promises of a meeting with Clinton were shelved; and Clinton's latest efforts to curb Medicare costs (see "'Homebound' for real," below), say activists, show that he still doesn't get it about the need for a national attendant services program.

Gingrich's office, says Johnson, "has been telling local folks that ADAPT keeps moving the goal posts. That is patently untrue."

Last November, Gingrich signed a pact -- ADAPT's Mike Auburger was the other signee -- to "pass a bill (and get it signed into law) which will create choice so people with disabilities can get attendant services instead of being forced into nursing home care" and to do it "as early as possible in 1997." His statement pledged him to "introduce the bill in January" and "request hearings in February and March" -- none of which happened.

Flood help still needed

Options, the Interstate Resource Center for Independent Living in East Grand Forks, Minnesota, was hit hard by this spring's flooding of the Red River and lost "just about everything" Donations are being gratefully accepted. Checks should be made payable to "Options" and mailed to them at their temporary home at: 1010 Central Avenue, NE, East Grand Forks, MN 56721 (218) 773-6100.

Administration backslides
"Homebound" for real

Current Medicare rules say the only people entitled to home health services with Medicare money are those who meet the rules' definitions of 'homebound." In May, the Clinton administration floated a proposal to change the definition of "homebound." Good, you think? Think again.

The Administration's proposal calls for a change in the definition of "homebound" that would limit a person's trips out of the home to no more than 5 a month, of no more than 3 hours each. If a person left home more than that (16 hours) they would no longer be defined as "homebound" -- and would no longer be eligible for "home health services" under Medicare.

Current rules, though bad enough, are more vague and therefore allow more flexibility. They simply say to meet the definition of "homebound" (and thus remain eligible for "home health care"), one's trips from the home should be "infrequent" and of "relatively short duration."

Rather than doing away with the entire odious concept of having "homebound" be a criteria for what are essentially attendant services, the Administration seems to want to make sure that nobody who can get around outside their home at all gets any assistance. With such thinking in the Administration, it's no wonder Clinton aides are in no hurry to see a bill for a national attendant services program made law.

The proposed "homebound" change -- a point that remained part of the currently proposed Administration budget as Ragged Edge went to press -- is meant to curb what officials call "skyrocketing costs" in home health care. They believe the program is growing too fast, too many people are using it. Analysts suggest the growth is due to hospitals sending people home sooner -- primarily elderly people -- people who then need some attendant services (or "home health services," as everyone calls it).

To control costs, they might try passing a national attendant services law.

Alleged misquote
causes outrage at
Catholic official

"I had to make it clear that this was not the position of the Catholic Church, the pope or the National Conference of Catholic Bishops," Mary Jane Owen, head of the National Catholic Office of Persons with Disabilities said of the April 9 remarks by Bishop Javier Echevarria, head of Opus Dei.

Echevarria's remarks, reported initially by the Italian press, caused a furor both in Europe and among disability groups in the U.S.

At an April 9 meeting in Sicily of 1,500 Opus Dei followers, Bishop Echevarria was quoted as saying that "a poll says 90 percent of the handicapped are children of parents who did not come to marriage in purity." The story was later disseminated via the Internet.

Opus Dei officials, contacted by the press to explain the remark, only solidified the organization's reputation as a cloak-and-dagger right-wing organization when they reportedly insisted that Echevarria had been referring "not to handicapped people in the broad sense" but to AIDS and "HIV-infected children born to HIV-infected parents."

The Italian Down Syndrome Association expressed "horror and unease" and called on the bishop to apologize "to the handicapped and to those who care for them."

Echevarria insisted to reporters he'd been misquoted, and that "solidarity with the disabled" was an important part of Opus Dei. "[T]he thought that even one parent of a disabled child may have felt . . . ill treated . . .pains me deeply," he said.

"Whether the inital story was true or not," Owen told the Catholic News Service in Rome, "its mere existence undermines" church outreach efforts to people with disabilities. Owen says the mission of her office is to "'build welcome, access and inclusion."

Abuse at institution is caught
by TV camera -- but Center
continues operations as usual

An inmate being beaten on the head with a clipboard. Another forced to sit in an uncomfortable position on the floor with his head against the wall -- for nearly two hours, viewers learned. These facts came to public attention when reporters aired footage from the hidden video camera WISH-TV of Indianapolis took into the New Castle Developmental Center 55 miles east of the city. The news report, aired in May, also showed New Castle employees yelling insults at residents.

WISH-TV reportedly started its surveillance after a former worker was charged with felony abuse last fall for stomping on the foot of a 43-year- old male resident and trying to punch him.

Despite the abuse (The institution houses 165 inmates labelled "retarded"; records show 167 incidents of unexplained injuries in the past year; four inmates have died under unusual circumstances since 1995; the center has had repeated Medicaid violations), the center was not shut down but given time to correct the problems.

A win for accessible housing

In late May, Baltimore Neighborhoods, Inc. (BNI) settled one of the six lawsuits the group had filed against Baltimore area builders (D.R. Nation, May/June).

The developer and builder of the Falls Gable Condominiums, Falls Gable Limited Partnership and Gables Development Company agreed to pay the plaintiffs $75,000. Of that amount, $7,500 will be available to pay ground-floor unit owners for the cost making their units accessible.

Looking for disability lawyers
The American Bar Association has started a project to gather names and addresses of attorneys who specialize in disability rights law. They'll compile a disability lawyer database, they say, and a website. Their goal, they say, is to link lawyers with disabilitiesi so they can address mutual concerns; and to link persons with disabilities to attorneys able to deal with their needs. The project was the idea of the ABA's commission on Mental and Physical Disability Law.

BNI's suit alleged that the Falls Gable Condominiums violated the Fair Housing Amendments Act of 1988. The suit had been joined by two residents. One owns a ground-floor unit that has no accessible pathway to it, making it impossible for friends who are wheelchair users to visit. The other uses a walker and cannot fully use the bathroom because it is too narrow.

Other provisions of the settlement include funds to be used to add curb cuts and parking spaces, replace door handles with levers and provide access to common use areas such as trash bins, mailboxes and the clubhouse.

"Just as the 'separate but equal' doctrine was ruled inherently unequal for blacks, so is it inherently unequal for people with disabilities," said BNI associate director Martin Dyer. Disabled people "can no longer be ignored by builders, developers, designers, architects."

For more information, contact Martin Dyer of BNI at (410) 243-4400.

Activists deplore UCPA statement on 'physician-assisted suicide'

This spring the United Cerebral Palsy Association passed a resolution on what activists call "physician-induced death." The group said it was "committed to protecting the civil rights of people with disabilities in the face of prejudice, discrimination and devaluation."

"Legalizing physician-assisted suicide," read its resolution, "may foster disability discrimination relating to quality of life."

After a great many other "Whereas's," the resolution said that "UCPA and its affiliates" would "advocate for the right of people with disabilities to have access to needed services and meaningful options with regard to adequate health care, reliable home-based support services, non- institutional living opportunities, and control over their lives and services"; would "support and defend people with disabilities from discrimination and harm resulting from physician-assisted suicide practices through development and implementation of public policy" and would "advocate in all arenas to assure that the life of a person with a disability is never regarded as less valuable or viable than that of individuals without disabilities."

Not Dead Yet activists quickly called the resolution "a total sidestep of the issue."

"It doesn't much differ from what some supporters of assisted suicide say," said Steven Drake, who manages Not Dead Yet's website. Drake called the UCPA statement "a disservice to the disability community" because it "assumes that legalization of assisted suicide is something that will happen."

NDY encouraged activists to contact UCPA with their objections. NDY activist Laura Hershey sent an email letter to UCPA officials that said the document "demonstrates a profound lack of resolve, and a complete failure to confront the real implications of this issue.

"Since UCPA claims to be a leading disability advocacy organization, it should take its lead from people within the disability community who truly understand this issue," she wrote. "Economic pressures and societal prejudices will act as powerful coercive forces upon people with disabilities and their families." she said -- UCPA's "weak statement" had said only that "people with disabilities and their families may be victimized. . . ."

Hershey wrote that the UCPA statement noted that "there is great concern that no adequate safeguards can protect people with disabilities from abuse of . . . physician-assisted suicide" yet "the resolution never comes out explicitly in opposition to legalization of this practice.

"In fact," she continued, "the language in the resolution seems to imply that legalization is inevitable and acceptable. It says, 'UCPA and its affiliates will support and defend people with disabilities from discrimination and harm resulting from physician-assisted suicide practices through development and implementation of public policy.' These are contradictory messages," she said, "first, that safeguards cannot protect us; then that UCPA will participate in the development of policies to protect us."

"This waffling seems to be a Washington-style effort to say what the public wants to hear; and an attempt to avoid, at all costs, taking a real position on this issue," wrote Hershey.

Neither Hershey nor others who have protested to UCPA have received a response from the organization, said Drake.

UCPA, said Drake, was mostly run "by parents and professionals" which he felt might explain what he called the "ambivalence in regard to the value of life of people with disabilities." Or perhaps, he said, it was "just the usual business of not wanting to do or say anything controversial."

Despite the name, UCPA deals with people who have disabilities other than cerebral palsy. In many communities UCPA groups run sheltered workshops. NDY was urging its activists to contact UCPA affiliates in hope that some were "more progressive" and might adopt a position stronger than the national one, said Hershey.

Not Dead Yet activists are cheered that some independent living centers are starting to speak out against what they call physician-induced death. But as the push to speak out intensifies, there are some who praise the efforts of groups like UCPA and the National Multiple Sclerosis Society even as they admit those positions fall far short of activists' ideals. A year ago, one person noted, UCPA would "certainly have done nothing at all."

One advantage of such groups' statements, however muted, was that "nobody will say they are pawns of right-to-life groups." (Many activists are concerned with media characterizations that they are mere puppets of right-to-life organizations.)

But other disabled people have disliked UCPA so long that they cannot find much good in the group's recent action. "I cannot accept disability /human rights advocacy from a so-called non profit with a multi-million dollar budget raised by the absolute worst of stereotyping telethon pityfests, which uses that money to operate segregated schools, recruiting diagnostic 'clinics,' perpetuation rehab, and sheltered workshops," said one critic.

The National Multiple Sclerosis Society's current position "clearly states that suicide and assisted suicide are fundamentally inconsistent with the Society's mission," said someone who said they had input into the process, and noted that this new position was much stronger than a previous one.

"Bringing groups like UCPA and the MS Society on board" on the issue has been difficult; the easy way would be to dismiss such groups, but ultimately the movement's cause is better served by having such groups make public statements, one said.

When the National Council on Disability released its statement opposing PID this spring, activists offered praise. It was "unambiguous," explained Drake.

The statement reads, in part, "After reviewing U.S. Supreme Court briefs and current research and consulting with organizations with various views, NCD found that the interests of people who would benefit from legalizing physician-assisted suicide are heavily outweighed by the probability that any law, procedures, and standards imposed to regulate physician-assisted suicide will be misapplied to unnecessarily end the lives of people with disabilities, and that such decisions would also entail an intolerable degree of intervention by legal and medical officials."

The Council statement concluded that the "status quo regarding physician-assisted suicide is preferable to the limited benefits to be gained by its legalization."

To critics who found the Council's longer report verbose, one NDY supporter noted that the group was "a good mix of IL/rights people and Beltway insiders" who had to "report to Congress and the President" and who therefore had to couch the message in terms that "make the point without creating a dangerous political backlash that could ruin everything."


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