Electric EDGE
Web Edition of
The Ragged Edge
March/April 1998

Electric Edge


Contents of D.R. Nation

Justin Dart, Jr. honored with Presidential Medal of Freedom

After an episode of heart failure, Justin Dart issues statement of conscience

Not Dead Yet confronts Hemlock in Denver

Activists defeat Maine 'right-to-die' bill

Life in a wheelchair, warns Calif. ombudsman

Many would rather die than use bedpan

Legal Services says NO

Greyhound Dirty Tricks in Georgia

Greyhound fails compliance tests

DREDF collecting Greyhound horror stories

Professor sues Orange County over access

New Penn Station may lack access

Woman wins over chemical terrorism

Access to single family homes

Calif. developers fight access rules

Justin Dart, Jr. honored with Presidential Medal of Freedom

Longtime disability rights activist and guru Justin Dart was awarded the Presidential Medal of Freedom - the nation's highest civilian honor - on the Jan. 15 birthday Martin Luther King, Jr., in a ceremony at the White House. It was the first Medal of Freedom for a disability rights activist.

In a message to movement activists, Dart said, "I accept this honor not for myself, but as a symbolic representative of the fundamental principles of democracy which I share with the President and with you. Most of all, I accept it as fitting tribute to your sacrifices and dedication over the years for the rights and empowerment of people with and without disabilities. This Medal belongs to each one of you. I am so proud to be one of you. I will fight at your side until the last breath."

Dart, who recently suffered a heart attack, received the Medal along with 14 other recipients, including civil rights activist James Farmer (who is now partly blind and in a wheelchair).

Calling Dart the "the father of the historic Americans with Disabilities Act," the White House noted that "Dart has profoundly influenced the public policy of this nation."

In the news . . .

Many news accounts of the Medal of Freedom awards chose to highlight James Farmer, recalling him as the activist who had led the first civil rights sit-ins. In some press accounts Dart was identified as a "polio victim."

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After an episode of heart failure, Justin Dart issues statement of conscience

"System coerces millions

to be caged in nursing homes"

On December 7th I suffered a serious episode of heart failure. The good doctors and staff at Georgetown University Hospital saved my life. During eight days in intensive cardiology care they pretty well exhausted the resources of science, but they were not able to cure the basic disease. These are world-class professional people. These people mean well. I thank them and I love them.

But they are underfunded and understaffed. Their obsolete hospital, system, and attitudes are significantly hostile to people with disabilities. I felt like a subhuman - a laboratory rat in a cage.

Against the advice of several doctors I made a decision to continue my life and my fight for life in my home.

Here I am surrounded by people I love. Here I am in command of my life. Here I am senior partner in my own health care. Here I can continue my politics of freedom.

I was told that I might not live as long. Maybe not. This is a matter of principle - to live free as human beings were meant to live.

This is my protest against a system that coerces millions of people with and without disabilities to be caged in hospitals, nursing homes, and other oppressive settings. There should be funding and social structure which enables people to take command of their lives, which gives them the choice of living and dying in their own homes or wherever they choose.

This is my appeal: Let us unite in a revolution to eliminate primitive practices and stereotypes, and to establish a culture that focuses the full force of science and democracy on the systematic empowerment of every person to live his or her God-given potential. FREE OUR PEOPLE! -- Justin Dart

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Not Dead Yet confronts Hemlock president's 'lies about real agenda' at death group's headquarters in Denver

Denver (DNS): Members of Not Dead Yet and American Disabled for Attendant Programs Today chained themselves together and occupied Hemlock Society national headquarters here in late January until Denver police removed them for trespassing.

The group was protesting Hemlock's December 3, 1997, press release in which Faye Girsh, executive director of Hemlock USA, called for a new lesser class of criminal homicide in cases such as David Rodriguez, who received a life sentence from a Louisiana court for shooting his 91-year-old father, who was terminally ill. (Canada has proposed a similar "lesser crime" for killing disabled people; see story below.)

"We suggest that, if these cases are to be prosecuted, they should be treated as special crimes of compassion and evaluated separately," said Girsh's press release. "Some provision should be made for a situation in which life is not being sustained by artificial means but, in the belief of the patient or his agent [his life] is too burdensome to continue." Girsh also recommended a legal procedure to hasten the death of a "demented parent, a disabled spouse or child."

In the past, Hemlock members have claimed that the disability community's opposition to legalized assisted suicide was based on unfounded fears. The Society has maintained it only supports legalized assisted suicide in the case of terminally ill, competent adults, who request assistance to end their lives.

"We were in there to draw the attention to the fact that the Hemlock Society has lied about what their real agenda and goals are," says NDY's Steve Drake "The press release was clear evidence that their claims to want a narrow right to assisted suicide was a lie," Drake added.

Last year the U.S. Supreme Court cited a legal brief filed by NDY and ADAPT in its ruling that there was no constitutional right to assisted suicide.

The 25 activists remained in the offices of the nation's oldest and largest right-to-die organization until police removed them. Ten were arrested and later released.

- Leye Jeannette Chrzanowski.

©1998 The Disability News Service, Inc.

Hemlock 'clarifies' position

The Hemlock Society USA endorses physician aid in dying for mentally competent adults who are terminally ill and request it.. . . We do not advocate legal help in dying for incompetent people, chronically ill or children. . . . . Because legal options are not available to many who are desperately ill and who wish to hasten their death, loved ones and caring physicians become involved. In December two cases were tried in which a compassionate family member ended the life of a loved one who was suffering. One was Robert Latimer in Canada . . .

Clarification of Hemlock Statement on Mercy Killing issued in late January, 1998 by Faye Girsh, Director, Hemlock Society USA

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Activists help defeat Maine 'right-to-die' bill at 5-hour hearing

The disability rights perspective was heard loud and clear at a legislative public hearing held in late Janaury to debate a bill to legalize assisted suicide in Maine. After a five hour hearing, a legislative committee voted 12-1 against the bill. It is given little chance of passage.

Alice Conway, who has spina bifida, publicly disclosed that her doctor had called her just a month earlier and told Conway that her recurring kidney infection would no longer be treated, telling her the decision was "the best one for you." Conway has since changed doctors.

Dennis Daigle, from Brunswick, testified that he'd have been eligible three times under the proposed law. The quadriplegic man said he'd been diagnosed three times - - incorrectly - as having less than six months to live. Many doctors, Daigle testified, erroneously believe that conditions such as quadriplegia and cerebral palsy "are considered terminal."

Many disability activists statewide have worked against the bill. National Not Dead Yet activist Diane Coleman submitteded five pages of testimony.

Dozens crammed a small room in the Maine State Office Building in the state capital to testify for and against the bill. State Rep. Joseph Brooks had introduced the bill after his father had died of cancer.

- Mike Reynolds

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" Well, what if he had to spend the rest of his life in a wheelchair?"

- Sheila Abernathy, Ombudsman

Orange County Council on Aging

By Ken Stein

I was in Southern California visiting my 87-year-old father, who was in the hospital recovering from a broken hip. He'd had a second heart attack which had left him pretty weak; he also has Parkinson's. His memory is not very good. But his spirits are great; he remains a sweet, great guy.

The hospital social worker called a meeting of the family to sign legal papers. My mom, dad and I met in my father's hospital room with the social worker. An ombudsman from the Orange County (California) Council on Aging was also present. State law requires an ombudsman's presence whenever documents are signed in a hospital regarding "durable power of attorney for health care" (dealing with who will speak for the person if they are not able to speak for on their own) or regarding decisions about how far the hospital is to go with resuscitation and subsequent life support. The ombudsman, says state law, must witness the signatures.

An Orange County Council on Aging brochure calls the ombudsman "an impartial mediator, an advocate of basic human rights."

This ombudsman, Sheila Abernathy, was under the mistaken impression that my dad was currently a "no code" - meaning that the hospital would take no steps to either resuscitate him or prolong his life by any artificial means In fact, he rightfully was and still is a "full code" - requiring that all steps be taken to resuscitate him and do whatever necessary to keep him alive should he have another heart attack.

Abernathy was not impartial. As the four of us gathered around the three sides of his hospital bed, Abernathy recited a nonstop litany of reasons why a "no code" was a "really good choice":

-If someone had a heart attack, you wouldn't know what they'd be like after they were resuscitated.

-The man could be a tremendous burden on his family, emotionally and financially; he probably wouldn't want to go on living.

-There was no point in keeping someone alive whose quality of life was real lousy.

And on. And on.

Although Abernathy continually stressed that "we have to ask him what he wants," she never asked him. She just kept singing the praises of "no code."

I began to challenge her arguments for "no code." Then she looked at me and said, "Well, what if he had to spend the rest of his life in a wheelchair?!?!"

It is hard for me to be articulate when I am furious. But I did my best. I let her know her attitude was horrific. It was wrong, I told her, to be saying those kinds of things to family members when she was supposedly acting as an advocate for the patient. She got huffy. She wasn't an "advocate," she said; she was an impartial witness - there only for the signing of the documents.

My father opted to sign the standard Natural Death Act Declaration: if he is ever "in a persistent vegetative state" with no hope of coming out of it, and his life is being prolonged solely by artificial means, they can pull the plug. But not until then.

In advocating death, Abernathy is not living up to her obligation to be an "advocate of basic human rights. The most basic human right is the right to live. Orange County's ombudsmen should be better trained.

Ken Stein is the Manager of the ADA Technical Assistance Unit for the Disability Rights Education and Defense Fund. He can be contacted at kstein@dredf.org.

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Marjorie Wichorek's death a reminder

Many would rather die than use bedpan

Marjorie Wichorek, at age 82, was "disgusted with her incontinence."

Late last year, psychiatrist Georges Reding of Kalamazoo , who had reportedly begun a "fellowship in assisted suicide." under Kevorkian, took the life of the Detroit woman. Wichorek was a "fervent assisted suicide activist," wrote Detroit Free Press Staff Writer Raja Mishra, who "believed that anyone over 80 years old should have the option of assisted suicide, regardless of their health.

"In her suicide note she complained that her health deprived her of taking walks, gardening, watching television, and many activities she enjoyed. Her friends disputed this," wrote Mishra. But Wichorek's "disgust with incontinence" is emerging as a major reason a number of elderly contemplate suicide.

Incontinence is "the most common reason the elderly are put in an institutional setting," Detroit Medical Center's Dr. Paul Werner told the Free Press.

Detroit Free Press writer Raja Mishra can be reached at 1-313-222-6487.

Death speedup

By now Jack Kevorkian has "assisted" in over 100 suicides, according to his attorney, Geoffrey Fieger - a third of them last year.

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(Just A Crip Killer)


sobriquet suggested by

anonymous crip wag

Activists applaud Canadian gov't.'s appeal of Latimer's reduced murder sentence

As Canadian disability activists had called for, the Saskatchewan government prosecutor in December appealed the reduced sentencing of Robert Latimer for the murder of his 12-year-old daughter Tracy, who had cerebral palsy (see D.R. Nation, Jan./Feb.)

Jim Derksen, of the Council of Canadians with Disabilities' Human Rights Committee, said the CCD had feared the case would set a precedent endangering the lives of Canadians with disabilities. The group is seeking to intervene in the appeal on behalf of Tracy.

A move underway to create a new legal category of murder - "compassionate homicide" (with a lesser sentence than other murder charges) - has enraged Canadian disabilty rights groups. Hugh Scher, chair of CCD's Human Rights Committee, said CCD would continue to fight the move to what he calls "state sanctioned killing of vulnerable individuals in our society."

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Legal Services just says 'no'

The Legal Services Corporation has announced that its funding cannot be used for legal assistance or advocacy of physician-assisted suicide, euthanasia, or mercy killing.

On Martin Luther King's Birthday
Georgia TV catches Greyhound's dirty tricks on film

ADAPT-Macon and ADAPT-Atlanta hooked up to get media coverage statewide in Georgia during two actions that lasted over 8 hours in a bitterly cold January rain, said ADAPTactivist Zen Garcial.

"Macon-ADAPT fired up the action by press interviews as they were 'loaded' by Greyhound - Macon's Channel 13 videotaping the entire 100-mile Macon-Atlanta trip and back.

"In Atlanta we waited, waving our posters an extra hour for their bus, which was late. Ten of us experienced that new Scal-O-Mobile, but no one really knew how to use it. At past actions, no TTY's been available - but suddenly here was one. There were signs this time, too: 'We welcome people with disabilities. If you need any accommodations, just ask us.' We said, 'lifts, not 'helping hands'!"

"Pieces of chairs scattered across the sidewalk and one chair stuck in the middle of the luggage compartment, the TV cameras rolled."

Spectators saw the light. "It is a crying shame to discriminate - especially on King's birthday!"

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Greyhound fails activists' test of ADA compliance

Last September ADAPT members made 41 trips on Greyhound Lines to test the level of service and compliance with the Americans with Disabilities Act. Of those who rode . . .

36% had to get help from non-employees when Greyhound employees would not or did not know how to assist

29% were required by Greyhound to bring their own helper

25% were dropped or otherwise hurt being "helped" on and off the bus

18% sustained damage to their wheelchairs

22% of the riders were asked to reschedule their trip for the convenience of Greyhound, rather than when they needed/wanted to travel

58% whose buses stopped at rest stops were not given help to get off at the rest stops (Restrooms on the bus are not accessible)

At Greyhound stations, testers found inaccessible entrances, restroom, toilets stalls, phones, water fountain

Nearly 60 percent of all testers were treated rudely by Greyhound personnel. They heard, "people like you should not ride the bus" and "we don't know how to handle you kind of people." One tester, who was deaf, could never get an answer from the Greyhound ADA TTY assistance line.

"These tests are the mere tip of the iceberg," said ADAPT. They "represent a widespread failure by Greyhound to meet either the spirit or the letter of the law."

Nearly a third of those involved in the test were simply refused rides by Greyhound. - the comp-any either refused to honor tickets already purchased, said flatly that they'd be unable to accommodate the tester, or told the tester to schedule another time to ride.

More than one Greyhound station who did take riders in wheelchairs called "911"for assistance in getting the rider on or off the bus.

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dredf wants . . .
Your Greyhound horror stories

The Disability Rights Education and Defense Fund (DREDF) is collecting stories from people who are having problems with Greyhound. The group says it's "considering some kind of legal action."

DREDF wants to know if you were ever:

  • denied purchase of a ticket
  • denied help boarding or disembarking
  • denied service because you failed to bring along a non-disabled companion
  • denied your request to have the bus to stop at an accessible rest stop
  • told you couldn't bring along your service animal

Other questions DREDF is asking include:

  • Have you been boarded or deboarded in such a way that reflects insufficient staff training?
  • Did Greyhound ever ask for you to tell them more than 48 hours ahead of time that you'd need help boarding?
  • If you did not provide advance notice, did Greyhound personnel make a reasonable effort to assist you in boarding
  • How was your wheelchair accommodated?
  • DREDF also wants to hear from people who feel that Greyhound has retaliated against them for exercising their rights under the ADA, as well as people who have been charged more for a Greyhound service than someone who is nondisabled.

    If you have a disability, (or have accompanied someone with a disability who rode or tried to ride on Greyhound) and have had one of these problems, contact Mark Breimhorst at DREDF at 510-644-2555 Monday, Wednesday and Friday afternoons, or send an email to markb@dredf.org.

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    Professor sues Orange County over jury access

    "It was CLIPI's decision to frame the lawsuit and publicity around the jury service issue," says Ragged Edge reader Art Blaser, a Chapman University political science professor. With the help of the Center for Law in the Public Interest, based in Los Angeles. Blaser sued Orange County, Calif. in early January, "alleging that he can't serve jury duty because county buildings and services have not been made accessible to the disabled," according to reports in a number of local California newspapers.

    Blaser says it was the Center who contacted him. "They were hot to go with a suit that covers all county buildings," he said. "I jumped at the opportunity to be a plaintiff."

    Orange County has " filed a lengthy 100-plus page statement about the ways that their buildings were not in compliance with the ADA, and then did absolutely nothing to address the problems," says Blaser. A similar situation had occurred in Los Angeles, he said; a suit filed there was " settled out of court quickly. This case seems similarly open and shut." When Ragged Edge went to press, no settlement had been announced.

    When the suit was filed, the UPI reported that " A disabled political science professor has sued a Southern California county, alleging that he can't serve jury duty because county buildings and services have not been made accessible to the disabled. " The UPI story was, says Blaser, "pretty typical of the coverage." The UPI reported that the suit " accuses Orange County with failing to implement the Americans with Disabilities Act and seeks a court order to force officials to comply."

    The UPI story quoted CLIPI attorney Ed Howard: "The county identified enough barriers to fill volumes, but it never identified any solutions. That's the worst kind of apathy. The county...just seems to be placing (disabled citizens') civil rights on indefinite hold."

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    "The lawsuit was filed on behalf of Chapman University associate professor Arthur Blaser, who suffered a stroke in 1993 that paralyzed one side of his body." UPI , Jan 12, 1998

    I wouldn't use the phrase "suffered a stroke", says Blaser. "But the media seems to love it. It's been in a lot of the coverage."

    Having the stroke was easy," Blaser continues. "If I've 'suffered,' it's been from the lack of access to buildings, from society's attitudes."

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    Activists want Clinton to intervene
    New Penn Station redevelopment may not have room for full access

    Wheelchair activists in New York City are pressing for full access when Penn Station is redeveloped into a glistening Amtrak Station to rival D.C.'s Union station. But access is already required by law (the ADA, etc.). Right? Well . . .

    The new station, planned for the huge, historic Farley Building at 33rd St. and 8th Ave., won't have room for full access to train platforms unless the Postal Service, currently ensconced there, cedes the full ground floor to the project. But the P.O. is balking, says Jim Davis of Disabled in Action's Ad-Hoc Working Group on Penn Station.

    Backers of the Penn Station plan, including N. Y. Sen. Patrick Moynihan, say the P.O. can shift some operations elsewhere - if they're told to. President Clinton can order them to cede the necessary space.

    Davis is urging activists nationwide to write to Clinton, urging that the Postal Service "give the entire ground floor and basement over to the Penn Station project - including access from the sidewalks" (Davis says postal trucks now block access.).

    Clinton's address is: The White House, Washington, DC 20500.

    Fax: 202/456-2461

    Email: president@whitehouse.gov.

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    Woman wins over

    'chemical terrorism'

    In what's been called a "landmark decision," a California arbitrator has told the Culver City School District to install surveillance cameras to catch students who have sprayed chemicals like bathroom deodorizer into the classroom of biology teacher Judith Sanderson. Sanderson suffers headaches and nausea when exposed to strong chemicals, a result of an accident with formaldehyde. Some students have taunted Sanderson for the disability, although most, she says, have been supportive, agreeing, for example, to refrain from wearing perfume class.

    The California State Mediation and Conciliation Service decision is binding. Students who are identified as leading the assaults will be suspended.

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    Georgia, other states press access in single-family homes

    A bill introduced into the Georgia state legislature in January calls for access features in the ground-floor bathroom of all new single family housing (and duplexes and triplexes) built by developers for sale "on speculation" - meaning, for example, homes developers erect in new subdivisions and then advertise for sale.

    The law will require builders to:

    • install a 34-inch bathroom door
    • provide a 32-inch clear passage space into the room to the toilet
    • add blocking in the walls around the tub, sink and toilet to allow the addition of grab bars at a later time by the home owner.

    New multi-family construction of 4 or more units already has such requirements, part of the Fair Housing Act.

    Bills to provide a basic level of access in new single-family homes have been in the works in other states, too. Illinois, Vermont and Wisconsin activists have had similar bills introduced in their state legislatures, says Eleanor Smith of Concrete Change, the Atlanta-based group responsible for the Georgia bill.

    HB 1277, the Basic Bathroom Standards Act, will, if passed, have the effect of extending the concept of "visit-ability" to all new home construction in the state. New homes built expressly for a specific homeowner will be exempted from this law; the bill applies specifically to homes built for immediate sale (built "on spec"). For more information, contact Eleanor Smith of Concrete Change at 404/378-7455.

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    California developers try to change state requirements for access

    In a "special interest proposal" backed by major developers, California hotels, motels and restaurants are trying to get the state Building Standards Commission to reduce access requirements, say disability activists.

    They don't want to have to provide "detectable warnings" for blind people; they don't want to have to provide visible strobe alarm systems in bathrooms;; they want to be able to eliminate the circle and triangle signs on restroom doors "which are are vital for visually and cognitively impairedsons," according to activists. The industry also wants to be "exempted from providing accessible paths of travel, restrooms drinking fountains and telephones in remodeling projects over $85,000."

    Other propesed changes would make sinks harder to get up under in a wheelchair; would "allow local jurisdictions to circumvent the requirement to provide accessible parking." and would change the height of door handles, making them out of reach for many disabled people.


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