updated 3/29/2005 5:54:09 AM ET 2005-03-29T10:54:09

Grabbing attention with a brief, dramatic demonstration, disabled activists have been raising their voices throughout the final stages of the Terri Schiavo drama to send a message: that Schiavo, too, is a disabled person who is worthy of living.

“There is a perception that death is better than living with a disability,” says Mary Lou Breslin, a senior policy analyst with the Disability Rights Education & Defense Fund, based in Berkeley, Calif.

And that, she says, should not be the case.

Disabled activists went to great lengths over the weekend to make their point, a few of them laying on the ground outside Schiavo’s Florida hospice next to their wheelchairs.

“They’re saying, ‘This is who I am. This device here allows me to get around — but this is who I am,”’ says Stephen Drake, a spokesman for Not Dead Yet, a group based in Forest Park, Ill., that focuses on end-of-life issues for disabled people.

Drake’s group is one of a number of disabled advocacy groups that — though even divided within their own ranks — have taken a public stand in the Schiavo case. The groups include the American Association of People with Disabilities and the National Council on Independent Living.

Federal court reviews?
Among other things, they’re asking Congress to consider requiring a federal court review in disputed cases where the wishes of a legally incapacitated person are not in writing and when family members disagree about whether to withhold food and water. They’re also using the issue to push Congress to drop proposed cuts in Medicaid, which many say would decrease the quality of life for disabled people who cannot afford their own care.

The federal review Congress allowed as a special circumstance in the Schiavo case caused a backlash from many Americans uncomfortable with the government intervening in a family matter. But activists say such reviews are necessary to safeguard the incapacitated person’s rights.

“We obviously want people’s private life to be private. But to say there should be no review is not practical,” says Harriet McBryde Johnson, a disability-rights lawyer in Charleston, S.C., who’s been physically disabled since childhood.

McBryde Johnson says that, since Schiavo was not suffering from an illness or condition that threatened her life, removing her feeding tube was a decision to kill her.

“This belief that withdrawing a feeding tube is different than other killing — why is that a reasonable distinction? I haven’t heard anybody say it would be OK to kill Terri Schiavo if she weren’t on a feeding tube,” McBryde Johnson says.

Uncomfortable juxtaposition of groups
Taking such a stance has placed disabled activists alongside religious conservatives, who have pegged the Schiavo case as a right-to-life issue. Many disabled activists say it is an uncomfortable juxtaposition, since many do not want to be tied to the abortion issue.

But Marvin Wasserman says the terminology he’s heard disabled activists using in the Schiavo debate — calling removing the feeding tube “murder” and referring to Michael Schiavo as Terri’s “so-called husband” — has angered him and others.

Wasserman, a New Yorker whose quadriplegic wife told him of her wish to die after she also got cancer, says it’s wrong for people to second-guess Michael Schiavo and his push to have her feeding tube removed.

“I have a very strong feeling that he probably knew her better than anybody else and that he knew what her wishes were,” says Wasserman, whose wife was removed from life support after she was declared brain dead.

“We should be more concerned about fighting for retaining and improving the quality of life for people who are conscious of their physical state,” he adds, “so they know that at least there are some options for having a decent quality of life.”

'Latent prejudice'
Next week, the Senate health committee has scheduled a hearing to discuss the Schiavo case and to examine what committee chairman Sen. Michael Enzi, R-Wyo., called “current health care practices used in the care of non-ambulatory individuals.”

Some hope the hearings will provide an opportunity to discuss the broader issues facing disabled people — one of which is discrimination, says Lennard Davis, a professor English, disabilities studies and medical education at the University of Illinois at Chicago.

He recently wrote a piece in response to the movie popular “Million Dollar Baby,” which received top honors at this year’s Oscars. In the movie, the trainer of a quadriplegic boxer, played by actress Hilary Swank, removes her from life support in secret, at her request.

“The issue that it’s better to be dead than to be a quadriplegic indicates that there’s discrimination in this country,” Davis says. “And the Terri Schiavo case is just bringing out that latent prejudice, too.”

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