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Jewish World Review May 2, 2005/ 23 Nisan, 5765

Nat Hentoff

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Consumer Reports

Americans lost in the shadows | During Terri Schiavo's embattled final months, most of the media ignored that her most personally concerned supporters were members of many disability rights organizations. Among them was the largest of those groups, the American Association of People with Disabilities. Its president and CEO, Andrew J. Imparato, points out there are more than 56 million American children and adults with disabilities; and, I would add, many of us who are not currently disabled but may eventually join their number.

This past March, Imparato, speaking to CNN regarding Schiavo's plight, said that he feared that "when we start devaluing the lives of peoples with disabilities, we don't know where that's going to stop."

Tellingly, he added: "You also need to take into account the financial implications of all of this. We have an economy that is not doing as well as it once was and a lot of people are looking at how can we save money. One way to save money is make it easier for people with disabilities to die."

Since the final removal of Terri Schiavo's feeding tube, disability rights organizations have become increasingly involved with getting Congress to pass federal legislation that can begin protecting the voiceless — as Terri was — against guardians who have conflicts of interest. Their claims to know the wishes of persons who can't speak for themselves are often disputed by other members of the disabled's family.

While Terri Schiavo was still alive, moreover, Sen. Tom Harkin (D-Iowa), working hard to get congressional intervention in Schiavo's case, said: "There are a lot of people in the shadows, all over this country, who are incapacitated because of a disability, and many times there is no one to speak for them, and it is hard to determine what their wishes really are or were."

For years, I have relied on information and analysis on a deeply informed spokeswoman for disability rights, Mary Johnson, whose valuable Web site is As she says:

"The issue is much bigger than Schiavo, and it is not about the 'right to life' — it is about equal protection of the law. Constitutional protection."

The 14th Amendment guarantees every one of us that no state shall deprive "any person of life, liberty or property, without due process of law." And the tragedy of Schiavo was that — in all of the courts, up to and including the Supreme Court, she was indeed bereft of due process because those courts relied entirely on the rigid misunderstanding of the facts by one circuit state court judge in Florida.

That's why Congress must provide carefully designed federal legislation for Americans "in the shadows." As Harkin says: "Where someone is incapacitated and their life support can be taken away, it seems to me that it is appropriate — where there is a dispute, as there is in this case — that a federal court come in (outside of a state court's jurisdiction), like we do in habeas corpus situations, and review it and make another determination."

Those of us who are not incapacitated, but may only be "temporarily able," should also beware — Harkin warns — of guardians who feel "that their ward is as good as dead, better off dead, or that the guardian himself or herself would be better off without the ward."

Also in need of protection by federal law are the disabled in hospitals in those states where doctors and bioethics committees can and do decide to refuse intensive care to patients they consider "futile" to further treat. These abandoned human beings may include people diagnosed as being in a persistent vegetative state (a diagnosis that is not error-free) or in a minimally conscious state.

Two years ago, during my coverage of the Terri Schiavo case, I quoted her father, Bob Schindler, who turned out to be prophetic as to his daughter's ultimate fate: "We pay great lip service in this country to disability rights, but as the degree of a person's disability increases, the level of protection that person receives decreases."

Another valuable researcher and writer on disability rights whom I consult regularly, Wesley Smith, special consultant to the Center for Bioethics and Culture, warns:

"Unless people object strongly and legislatures take active steps to intervene, this new and deadly game of 'Doctor Knows Best' will be coming soon to a hospital near you."

Terri Schiavo's prolonged, unjust death shows that state legislatures cannot be relied on to protect the disabled, particularly the voiceless. In Congress, there are members on both sides of the aisle who recognize the urgent need for legislation to separate the lawful right to die of cognitive people who wish to refuse treatment from a "duty to die" imposed on those who cannot defend themselves from the steadily advancing culture of death.

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Nat Hentoff is a nationally renowned authority on the First Amendment and the Bill of Rights and author of several books, including his current work, "The War on the Bill of Rights and the Gathering Resistance". Comment by clicking here.

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