Electric EDGE
Web Edition of
The Ragged Edge
Sept/Oct 1997

Electric Edge


Play "Tympani!"
Yeah, MDA's Jerry Lewis is still on board, despite Orphans' 1990 vows to oust him. But he's now ridiculed well beyond disability circles.

An Internet-hyped beerdrinkers' game, Tympani ("designed for play during the Jerry Lewis Telethon"), gives players points for downing swallows at virtually every predictably sappy moment: 3 drinks "every time Jerry sings You'll Never Walk Alone"; 3 drinks "whenever a performer who has done nothing new in the past 15 years comes on (e.g., Glenn Campbell, Wayne Newton)"; 3 drinks when "a toady from a large corporation gives Jerry a big check" (and another swallow for each additional million).

And, of course, swallows every time Jerry yells "Tympani!"

Rules can be found at http://www.realbeer.com/games.

Labor Day Weekend's just not the same
'Pityfests' a thing of the past? Maybe
A "celebration, not a telethon."

"We call it a Star Fest now."

These were responses Ragged Edge got when it asked the National Easter Seal Society and United Cerebral Palsy Associations about their telethons.

Though the Telethon We Love To Hate -- the Muscular Dystrophy Association Jerry Lewis Labor Day Telethon -- is still cranking it out, telethons for cripple cures may very well be dying out.

That's what disability scholar Paul Longmore suspects, and calls this summer seemed to prove him right. Fewer hours, fewer "markets" (cities that carry the shows). This past spring, says Longmore, activists in Chicago never even heard about the Easter Seal telethon being on the air -- and Chicago is the home of Easter Seals. There's no more national UCP telethon either -- only a 4-hour nationally produced video that UCP chapters can use at hometown TV stations to pep up local fundraisers.

Nobody admits to raising less money, but Longmore's convinced the "return on investment is not that good" anymore.

MDA says it raises more $$ each year, though it didn't supply figures, despite repeated requests from Ragged Edge.

Maybe they are raising as much money as ever. Tote-board histrionics has always been a shell game. Fundraising charities include all sorts of money sources when they ring up those grand totals at the end of the teary hours. What does seem clear is that the teary hours themselves are getting -- well, less teary. And though nobody says so, it also seems clear that what did it were the telethon protests of the early 1990s by Jerry's Orphans, aided and abetted by the late Evan Kemp. Longmore, who has miles of video of MDA telethons of years past, says he can trace patterns in MDA's approach based directly on public criticism. When critics protested, the Telethon changed. When protests waned, reforms MDA trotted out -- advisory groups, achievement awards -- waned as well.

Telethon criticism has had an effect beyond MDA. A staffer at UCPA volunteered that "historically people with disabilities have been treated as secondary people." (Though she didn't come out and say their telethon had done this.) "It wasn't bad before, but we have moved with the times," she said.

An Easter Seals staffer said that the organization was in the process of phasing out their telethon, candidly nothing that "we feel it's not an effective strategy anymore. We want to position ourselves as a service provider for people with disabilities, rather than a charity." They wanted to avoid "pity," she said, in a tone that made pity sound like a 4-letter word.

Evan J. Kemp, Jr.
At press time we were saddened to learn of the sudden death Aug. 12 of Evan Kemp, who died at home.

Evan had fought for disability rights for decades, from his founding of the Disability Rights Center to his fight against Jerry Lewis's pitythons to his pivotal role in getting the ADA into law and his work as chair of the EEOC. Recently, he spoke out eloquently against physician-assisted suicide. Evan's presence strengthened disability rights. Our movement will miss him deeply.

Treasury avoids obvious solution with $50 bill
A redesigned $50 bill hits the street this fall amid much U. S. Treasury hoopla about the note's alleged "feature making the note more accessible" to the "low-vision community." It and subsequent bills will have "a large dark numeral on a light background on the back of the note that will make it easier" to see.

Fine. What the Treasury doesn't mention is its ongoing refusal to make bills that would help not only low-vision but all people who can't see: bills of different sizes to denote different denominations, or bills with raised (embossed) symbols or Braille identifications, something blind activists have wanted for years. Although other countries routinely issue paper currency of different sizes, making it easy to know the bill's denomination, the U.S. calls this "impractical."

HUD to Austin, TX:
Accessible housing or else
The U.S. Department of Housing and Urban Development has entered into a "Voluntary Compliance Agreement" with the city of Austin, Texas, requiring the city to make "significant changes" in its accessible housing policy "or risk losing federal funds," says ADAPT of Texas, which filed the HUD complaint in 1995. The agreement makes Austin fund access modifications to 500 units "occupied by people who need access and do not have it" and amend its city building code to include access requirements. It also provides for training and education. ADAPT charged that Austin had failed to provide access in housing projects funded with public money.

Disabled immigrants' benefits restored
Congress's end-of-July budget deal lets legal immigrants in the U.S. when the welfare bill took effect last August stay eligible for disability payments, restoring SSI benefits to nearly 500,000 legal non-citizens.

Protesters serve notice on Greyhound
Tired of Greyhound bus lines' continuing refusals to equip buses with lifts, activists in dozens of cities blocked Greyhound buses Aug. 9 in a return to the 1980s tactics that had made lifts on buses the law of the land. ADAPT, going back to its old name of American Disabled for Accessible Public Transportation, stopped traffic in Chicago, San Francisco, Pittsburgh and other cities and stormed Greyhound Dallas headquarters.

Greyhound's whining about the cost of lifts got them exempted from the ADA for 7 years. When a study found that the least expensive way for bus companies to comply with the ADA was by using lifts, Greyhound lobbied Congress for more time. "City bus systems have bene buying and using lift-equipped buses since 1990," says ADAPT. "Greyhound continues to buy inaccessible buses." The August protests were a reminder to Greyhound that their stalling tactics were not appreciated.

The actions, involving dozens of protesters in each city, drew some news attention to Greyhound's continued balking, but the day ended with no commitment from the company to change its practices.

FDR wheelchair now law
Franklin Delano Roosevelt will be in a wheelchair at the Roosevelt Memorial. A bill signed by Pres. Clinton in July calls for "addition of a permanent statue, bas-relief, or other similar structure ... to provide recognition of the fact that President Roosevelt's leadership in the struggle by the United States for peace, well-being, and human dignity was provided while the President used a wheelchair." Michigan Rep. David Bonier called for the unreadable, outsized Braille (What? July/August) to be remedied, too.

Court votes accesss
In July the U.S. Court of Appeals unanimously affirmed a lower-court ruling in the case against MCI Center sports stadium last year by the Paralyzed Veterans of America ("Sports stadium renovations disregard access for disabled spectators," D. R. Nation, Jan./Feb.) A lower court had ruled wheelchair seat spots must let spectators see "as much of the action as anyone else"; MCI appealed. The appellate court decision against MCI "is the first of its kind and thus, it will likely have a direct impact on other pending similar lawsuits," said PVA's Lawrence Hagel. Ellerbe Beckett Architects, responsible for MCI, have designed other stadiums that have also been sued for similar reasons, including one in Buffalo, NY.

Four years later, ho hum
This summer, twins Kevin and Kyle Scherzer and Christopher Archer finally went to jail -- four years after their 1993 conviction in the highly-publicized sexual assault case involving a young woman in Glen Ridge, N. J. consistently described in news reports as "retarded." Lawyers' appeals exahausted, the twentysomething trio were whisked off to a campus-style prison; parole's in two years or less.

Long-awaited bills on attendant services now in Congress
A bill letting Medicaid money be spent on in-home services was finally introduced into the House of Representatives by Speaker Newt Gingrich in late June, during the second of two week-long stints in the nation's capital by members of American Disabled for Attendant Programs Today, who've been pushing a law for several years ("Where's Newt?" D. R. Nation, July/August). Organizing efforts turned to getting local and national disability organizations to formally back the legislation. At press time, nearly 100 disability groups had issued endorsements. ADAPT plans to return to Washington the week of Nov. 8.

The Medicaid Community Attendant Services Act, HR 2020 -- activists call it MiCASA --requires that anyone now "entitled" to nursing home or other institutional services through Medicaid be given "a choice where and how these services are provided." As ADAPT has long advocated, the bill lets "the money follow the individual." "There is no known medical reason why help with dressing, bathing, eating, toiletting and ventilator care has to be provided in an institutional setting," says ADAPT's Mike Auberger.

Though the bill would effect an historic change in how this country treats people with severe disabilities, there has been virtually no press coverage of either HR 2020 or a similar Senate bill, S879, which would also require Medicaid to fund in-home services. S879 is more attractive to many activists because it seems to offer more "consumer control" than the MiCASA bill does. Congressional insiders give it less chance of passage, though, simply due to partisan politics.

"Hopefully this doesn't become a contest," says ADAPT's Mark Johnson. "Let's get hearings. Let's testify. Let's draft language that would make both bills better" with the goal of getting a law "signed by the President in 1998."


Beleaguered Access Board takes show on road in November

The Americans with Disabilities Act, passed over seven years ago, was supposed to ensure access to buildings. But when the Architec-tural and Transportation Barriers Compliance Board (the group responsible for writing the access rules for the Act) decided to take a road trip to Louisville, KY (home of Ragged Edge) for a town meeting this Nov. 12 and 13, Louisville organizers worried that no hotel in the city could accommodate a large group of folks with disabilities -- and said so, publicly.

An article in last January's Courier Journal, though, didn't do much to put the fear of the law into area hotels. When an ATBCB staffer arrived weeks later to check out Louisville hotels for access, says Nancy Durham of Louisville's Metro Disability Coalition, a downtown Holiday Inn out-and-out told him they were "doing the bare minimum under the ADA. They said it twice!" recalled Durham, surprised that the hotelier didn't seem to grasp that the ATBCB was responsible for the rules on access laws! No hotels were spurred to beef up access for the group, although the Hyatt Regency did come through with the requisite number of rooms as well as TDDs and other access items.

In Louisville, the Board will listen to comments about the constantly-evolving access rules the Board continues to work on (last spring it issued rules for access to telecommunications; next up are recreation sites). Organizers hope crips turn out in force to speak their mind.

Maybe the attitude of those who balk on access isn't surprising. Disability advocates rarely officially file comments on proposed access rules, say those close to the Board. The Access Board hears constantly, though, from groups opposed to access. With no ammunition supporting the fact that "the public" wants strong access rules, the Board has little choice but to follow the "public" they do hear from -- those who oppose access.

This, anyhow, is one explanation for why the Access Board appears to have wimped out, as was charged recently by one publication.

"Blueprint for Segregation," in the June/July issue of Mainstream magazine, fumed that the Board requires just half the entrances in newly built structures be accessible, lets newly built restaurants have inaccessible areas and lets existing buildings ignore access altogether in areas not serving a "primary function."

"It's time to stop congratulating ourselves on the passage of the ADA. It's time to stop being so damn grateful that we're allowed in the mainstream community at all, and start demanding real equality," says the article, calling the Board's work "sanctified segregation." Others say the problem isn't with the Board so much as with activists -- who grouse but fail to submit strong pro-access comments during the rulemaking process.

If you want to make comments about access, or come to the meeting, contact the Access Board at 800/872-2253 (TDD: 800/993-2823); email at ola@access-board.gov -- or by writing to 1331 F. St., NW, Suite 1000, Washington, DC 20004-1111.

Here's a side of the Medicare fraud story U.S. News & World
Report's Longman didn't see:

Louis Ferrer, paralyzed in a 1992 diving accident, recently
wrote to an official with the U.S. Department of Health and Human
Services about Medicare rules requiring individuals be "homebound"
to receive services (
"'Homebound' for real," D. R. Nation,
July/August) and sent a copy of his letter to
Paraplegia News,
which reprinted it in their August issue. Some excerpts:

Some things I can do [are]: feed myself, shave, brush my teeth, comb my hair, manage my finances ... travel anywhere my power chair will take me (once I'm up in it), type, make politicians and others aware of dangerous situations for people with disabilities ...

I cannot maintain and clean my residence, reach most places, walk, prepare my own meals, bathe, control my bladder and bowels, dress myself ... without assistance . ...

I ... require digital stimulation bowel care three times a week. ... Two home healthcare agencies have discharged me from Medicare coverage [for bowel care] because they have seen me going down the sidewalk in my wheelchair. Because of this they consider me "not homebound." They ignore the fact that I need someone to dress me and get me ... to [the] wheelchair ... I know of others who have been discharged from home healthcare (bowel care) because they attend job training or school on a regular basis. They are considered "not homebound." This makes no sense at all. Their training would eventually lead to a job and reduction or total elimination of their need for Social Security Disability payments. ...

Kevorky off hook again
NDY siege thwarted by Fieger antics
Not Dead Yet members' June encampment at the Ionia (Mich.) County courthouse ended as soon as it had begun when the judge declared a mistrial opening day after the ultra-inflammatory opening statement of rogue pathologist Jack Kevorkian's lawyer Geoffrey Fieger. A month later, frustrated prosecutor Ray Voet dropped the case altogether.

Kevorkian had been charged with assisting the death of Loretta Peabody, who had multiple sclerosis (Kevorky's Kosmos, July/ August). Voet had dropped charges against Kevorkian sidekick Janet Good, fearing a "circus atmosphere." He told reporters he suspects there'll never be a way to hold a fair trial with such folks.


"Millions of Americans are so eager to have the government pick up the tab for their own or their parents' long-term care that they are willing to bend the rules"

writes U.S. News & World Report's Phillip J. Longman in the Aug. 11 cover story "Who is the victim?" News editors contend that "ordinary families bending the rules" are the real culprits "fueling the explosion in home-care cost."

Oblivious to the disabilty rights movement's years-long tries to make the point that in-home care is only costly when it's considered "medical," the media this summer dutifully repeated charges that the home health industry is out of control, never thinking to ask why home-health upstarts might find it lucrative to have folks hire "nurses" to do stuff other workers with a lower billable-hour rate could do just as well.

Reporting on August's Senate hearings on fraud in the Medicare home-health program, Longman zeroed in on ordinary folks who bilk Medicare into giving them "fully subsidized care at home rather than a nursing home."

Longman's point? Mom-and-pop sleazes who try to get Medicare to pay nursing-scale wages to send someone to get them up and dressed really belong in jail; they're driving up Medicare costs for all of us.

What he misses: Medicaid's rule insisting that home services must be "medical," outmoded and economically unsound, has needed changing for years. Disability activists have bitched about this problem -- the "medical model," they call it -- for decades.

Are reporters listening? No evidence they are.


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