October 6, 2004

ACLU of Florida
c/o Yvonne Nau
507 SE 33rd Terrace
Cape Coral, FL 33904

To the Board of Directors:

The purpose of this letter is to urge the ACLU's withdrawal from representation of Michael Schiavo in his efforts to carry out the starvation and dehydration of his brain-injured wife, Terri Schindler-Schiavo. This representation is inconsistent with the ACLU's established mission to protect the Bill of Rights.

As you should already be aware, seventeen national disability rights organizations joined in an amicus brief in the recent Florida Supreme Court proceedings in the Schiavo case, the third disability amicus brief filed in support of the Schindler family's efforts to ensure that their daughter continues to receive food and water.

The main point of the first disability brief was to urge the courts to require a genuine application of the due process standard that Terri's wishes be proven by clear and convincing evidence, consistent with the Cruzan standard set forth by the U.S. Supreme Court. That standard is vital to the survival of hundreds of thousands of people with severe disabilities in guardianship because, as numerous studies prove, guardians too often value the life of their ward far less than the ward values his or her own life. (See, e.g., Psychiatric News July 16, 2004, Volume 39 Number 14 © 2004 American Psychiatric Association p. 32.) This is not rocket science -- it is social science and, moreover, common sense.

The findings of the lower guardianship court that Terri would have rejected tube feeding in her present circumstances are so powerfully contradicted that they cannot meet the Cruzan standard. The following are some of the reasons why this is so obvious to organizations as prominent as the National Spinal Cord Injury Association, the National Council on Independent Living and The Arc of the United States (formerly the Association for Retarded Citizens):

Michael Schiavo pursued and won a large malpractice settlement after testifying that he would use Terri's portion of the proceeds on her rehabilitation. Only after securing the settlement did he then allege that Terri would refuse food and water by tube. Over the subsequent years, he spent over $550,000, the majority, of her rehabilitation funds on attorneys to secure a court order that would result in her death. If she had been dehydrated to death when he first requested it, if her family had not resisted, he would have received $700,000 in Terri's rehabilitation funds.

At the time when Terri allegedly stated that she would not want to be kept alive on life support (before 1990), the widely held public concept of "life support" was a ventilator. The general public did not think of simple tube feeding as "life support." So, even assuming for the sake of discussion that Terri made the alleged comment, she is highly unlikely to have meant it to include food and water by tube.

The original guardian ad litem brought into the case long ago at Michael Schiavo's request found that the evidence of Terri's wishes was not sufficiently credible due to Michael's conflict of interest.

One friend of Terri's has stated on CNN that they once argued over the Quinlan case, involving a New Jersey woman in PVS, because Terri objected to the friend labeling Quinlan the "state vegetable." The legal dispute was about Quinlan's ventilator, which was ultimately removed, but not her feeding tube, and she lived for ten more years.

The only witnesses to Terri's alleged statement against life support are from Michael Schiavo's side of the family.

The affidavit of a speech pathologist from the Rehabilitation Institute of Chicago, the number one such facility in the country, asserts that Terri swallows her own saliva and should, therefore, receive a new swallowing test and, if indicated, swallowing therapy. Michael Schiavo has opposed all efforts to attempt this course and wean Terri from the feeding tube.

In short, in our view, Michael Schiavo's conduct does not pass what might be referred to as "the smell test," and his assertions are not sufficiently credible to support the lower court rulings in this case. The failure of the appellate courts to overturn this life-and-death error is deeply disturbing to people with disabilities. We would compare this case to a death penalty conviction in which the courts dotted all their "I's" and crossed all their "T's", but have been proven wrong, as the courts were in numerous cases here in Illinois. In such cases, the legislative and/or executive branches should step in to protect the individual's life. In the context of the death penalty, you obviously agree. In a press release yesterday, the ACLU of Florida "asked the Governor to suspend further executions during the commission's review of Florida's death penalty." That was the point of the third disability brief filed in the Schiavo case -- the legislature and Governor needed to correct the errors of the judicial branch. We were deeply disappointed that you not only failed to defend Terri's due process right to be protected from a wrongful decision by a surrogate and the courts, but actually supported the surrogate trying to kill her.

In addition to the insufficiency of the evidence to prove what a legally competent Terri Schiavo would have wanted in her present circumstances, people with disabilities would urge you to reconsider the wishes of the disabled Terri Schiavo. On two or three occasions, we have seen video of Terri and Michael taken in the early years after her injury, when they were pursuing the malpractice case. She was up in a wheelchair, wore make up, and was clearly alert and attempting to speak. Since deciding that his wife should die, Michael Schiavo has deprived her of the basic stimulation of life that anyone needs, especially someone who has had a brain injury. Reportedly, she has not been permitted out of her room in three years; she has not been allowed TV; and Michael has required care-giving staff to "do their business and leave the room." As a direct result of this horrible neglect of her basic human needs, it is not surprising that Terri's condition has deteriorated. What is surprising is that Michael Schiavo has been permitted to use the increasing listlessness resulting from years of this crushing neglect to substantiate the assertion that Terri is in PVS, which is arguably a statutory prerequisite to a Florida guardian removing a feeding tube. Why is he allowed to legally profit from this grotesque wrongdoing?

People with disabilities look at Terri Schiavo and see a severely disabled woman with a powerful will to live. Competency is not an all-or-nothing thing. That's why the law provides for limited guardianship, which seeks to respect the choices of people who may not be fully independent in decision-making. The early videos clearly show a disabled Terri, choosing to live. The Terri of today, and all people in guardianship, deserve protection of their rights not to be deprived of life without due process by a guardian who feels 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.

An ACLU that is true to its mission would stand for the constitutional rights of the individual against the statutory rights of a guardian under such questionable circumstances as are evident in this case. And in balancing Terri's due process rights to refuse or consent to tube feeding, when in doubt, place a strong burden of proof on the surrogate who would kill. A formal and public withdrawal from representing Michael Schiavo is the only course consistent with the fundamental principles of the Bill of Rights.

Sincerely,

Diane Coleman, J.D. President

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