DISABILITY ADVOCACY ORGANIZATIONS VOICE SUPPORT FOR TERRI SCHINDLER-SCHIAVO
Florida Woman's Case Could Impact Millions with Disabilities
October 29, 2003

Contact: Mariana V. Nork
202-458-0046

Washington, DC - The American Association of People with Disabilities (AAPD), the nation's largest cross-disability membership organization, whose mission is the political and economic empowerment of all people living with disabilities in the U.S., today expressed strong support for Terri Schindler-Schiavo, a Florida woman with severe brain injuries who has been at the center of an emotional human rights debate for several weeks. We believe that decisions involving the refusal of a medical treatment, or nutrition and hydration, when such refusal will result in the death of the individual, which has been the case with Ms. Schiavo, must be severely limited.

We are joined in this statement by UCP (United Cerebral Palsy) and the The Arc of the United States.

The statement of support is as follows:

AAPD is making this statement in support of Terri Schindler-Schiavo and her human and civil rights. We come together for everyone who will be touched by disability in their lifetime and call on the general public to join with us in ensuring that Terri Schindler-Schiavo and others like her enjoy nothing less than the full advantage of all human and civil rights.

First and foremost, we assert that the courts, the political system and the general public must not allow public policy to develop that will de-value any individual, no matter what the extent of that individual's disability or incapacity. Correspondingly, the provision of medical treatment must always be non-discriminatory and never denied, delayed or withheld due to the existence of a disability. Treating people differently based on health or disability status violates their basic human and civil rights.

When an individual is unable to give informed consent, to make her/his own decisions to accept or refuse medical treatment, and when there is no advance directive stating the individual's preferences, it may be appropriate that the individual has a legal surrogate decision-maker such as a guardian. In such instances, it is of utmost importance that decisions made by the surrogate always be consistent with the best interests of the individual.

Decisions involving the refusal of a medical treatment, or nutrition and hydration, when such refusal will result in the death of the individual, must be severely limited. We wish to state clearly the very narrow parameters that we believe a surrogate decision-maker, such as Mr. Schiavo in his capacity as Ms. Schiavo's legal guardian, must honor when making decisions about Ms. Schiavo's medical treatment that will affect her very existence. Specifically, the authority to withdraw nutrition, hydration or medical treatment should be confined to those situations in which an condition is terminal, death is imminent and any continuation or provision of treatment, nutrition and/or hydration would only serve to prolong dying.

Terri Schindler-Schiavo is often said to be in a "persistent vegetative state." Whether or not this is the case, no one other than Ms. Schiavo, not even a guardian, has the right to make assumptions about the quality of her life. Nor do they have the right to make presumptions about the future of medical advances that might change that condition.

The need for limits on the powers of surrogate decision makers is nowhere clearer than on questions as fundamental as life or death, because the consequences of abuse or misjudgment are both ultimate and irreversible.

As advocates for all Americans with disabilities and their families, we stand with Terri Schindler-Schiavo to protect her civil and human rights as a living American.

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