Activists for disabled fear public perception

CHICAGO (AP) — 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 Mrs. Schiavo, too, is a disabled person who is worthy of living.

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

And that, she said, 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 Mrs. 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,’” said Stephen Drake, a spokesman for Not Dead Yet, a group that focuses on end-of-life issues for disabled people.

Mr. Drake’s group is one of many disabled-advocacy groups that — though divided within their own ranks — have taken a public stand in the Schiavo case.

Among other things, they’re asking Congress to consider requiring a federal court review in disputed cases where the wishes of an incapacitated person are not in writing and when family members disagree on care.

The federal review that 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,” said Harriet McBryde Johnson, a disability-rights lawyer in Charleston, S.C., who’s been physically disabled since childhood.

She said that, because Mrs. Schiavo was not suffering from an illness or condition that threatened her life, removing her feeding tube was a decision to kill her.

Taking such a stance has placed disabled activists alongside religious conservatives, who have pegged the Schiavo case as a right-to-life issue.

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

Mr. Wasserman, a New Yorker whose quadriplegic wife told him of her wish to die after she got cancer, said 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,” said Mr. 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,” Mr. Wasserman said.

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