Guest Opinion
All Lives Are Equal Under The Law

By Steven Eidelman, Executive Director,
The Arc of The United States, and
Stephen Drake, Research Analyst,
Not Dead Yet.

From Washington Watch: Volume 3 (2005) published by United Cerebral Palsy. Reprinted with permission.

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Terri Schiavo died on April 1. Her fate was a topic of intense debate for months, and it is clear now that her death will not end the dialogue. In fact, Terri Schiavo's death may propel end-of-life issues even further into public consciousness. If there is anything positive to emerge from her ordeal, perhaps it is that more Americans will consider having the difficult end-of-life conversation with all of their loved ones.

The case of Terri Schiavo raises a number of troubling questions for Americans. For people with disabilities and their families, the case represents a "slippery slope" and raises the possibility that the right to life of people with significant intellectual and/or physical disabilities might one day be questioned.

It was just 20 years ago that many of us were enmeshed in the "Baby Doe" case when the starvation and dehydration of a newborn infant with Down Syndrome exposed this all-too-common practice in the United States. In that case, two separate judges sanctioned the death of the infant, an infant whose life could have been saved without heroics. Although few would agree with those judges' rulings today, they were fiercely defended as a protecting a private matter between families and doctors back in the mid-1980s.

Today, there are thousands of people with disabilities who use feeding tubes. For them, a feeding tube is not life support or heroic intervention, but the normal way they get food and water. When they are hospitalized for any reason -- however minor -- they risk having their normal means of eating and drinking being classified as "extraordinary treatment" or "life support."

Few of us have enough experience with severe disability to make an informed choice in an advance directive, but clearly, having a significant disability does not mean you are "pre-dead." People with disabilities agree with the Americans with Disabilities Act -- that "disability is a natural part of the human experience." Indeed, so is death.

The persistent vegetative state diagnosis is another matter, however, one fraught with unreliability. The fair and just allocation of health care and long term support resources is often in the back of our minds, whether we talk about it or not. These are ample reasons why we must put aside the partisan posturing and have an open and inclusive discussion of the issues at hand.

The disability community today is troubled by the possibility that Terri Schiavo's life -- and death -- may cause legal protections for people who have guardians to be dismantled, making it easier for guardians to kill by withholding food and water. There must be a way to balance a person's right to expressly refuse treatment against a person's right not to be deprived of life without due process of law. Due process of law must appreciate the wishes and interests of people with disabilities, even if their lives are devalued by other people. Today, we fear that is not the case.

Terri Schiavo's wishes were not documented, and her husband and family had many conflicts. Advocates for people with disabilities would never have wished to deprive Terri Schiavo of her right to self-determination regarding the end of her life, had her wishes been documented in a living will and/or power of attorney. But they were not.

Given these ambiguities, the disability community feels that the courts should have ruled on the side of sustaining her life, not allowing her to die. The disability community, from many years of grappling with these issues, feels that in such cases, it is best to assume that life is preferable over death. This is the position of 26 national disability groups, many of which represent people like Terri Schiavo who have guardians.

State laws governing surrogate decision-making vary and are often the result of well-funded advocacy from a narrow group of professionals, not involving the viewpoint of people with disabilities. When a guardian is needed -- particularly a state-appointed guardian -- the possibility for conflicts of interest is clear. Thus, the Schiavo case has focused attention on the need for a "federal floor" to protect people under guardianship. Research indicates that people with living wills and advance directives frequently change their minds when the time comes to implement those directives. Once people experience severe disability, their sense of horror about disability usually fades. We also know that people who "cannot speak for themselves" are often able to use assistive technologies that allow them to communicate their wishes, hopes, fears, and good-byes even if they can no longer speak. In today's climate, it might be even more important to write down what you do want than what you do not want.

In addition, we must, as a society, stop using the term "persistent vegetative state." Too many people with significant disabilities have been called "vegetables," and this needs to stop. It is beyond demeaning. It is dehumanizing. In fact, some of the people who use the term most freely are doctors, and what often comes next is a discussion of the death or warehousing of the individual with such a pejorative label.

For a person with serious disabilities, the debate should not be about whether or not they are going to "get better" some day. Disability is a fact of life, every day of our lives. Millions of Americans are disabled, and for millions more, it is just a matter of time. None of us is guaranteed an able body or mind for life.

People with disabilities sometimes have wonderful lives, and sometimes they have lousy lives. They are just like other Americans. Just because a person has a significant disability does not mean that he or she does not love life. It does not mean that they should be assumed to be better off dead.

It is time for a call to conscience to both the Right and the Left. Guardianship should not be a death ship. People like Terri Schiavo, people with disabilities, are persons under the law, and they deserve constitutional protection.

The disability community is grateful that so many in Congress stepped up to support Terri Schiavo's right to live, even though we are concerned about the precedent that was established. We would like to see Congress follow up with the same level of concern in making sure we can provide care and support for the millions of Americans with disabilities by supporting Medicaid Community Attendant Services and Supports Act, legislation that would allow thousands of adults with disabilities who have Medicaid funded services to have a life in their communities, not just stay to alive in an institution. We call on the Congress to ensure continued support for Medicaid and other programs people need; and we look forward to the passage of the Family Opportunity Act, to allow families of children with significant disabilities to buy into the Medicaid program in order to help their sons and daughters live at home in the community, rather than being banished to a nursing home or institution.

Terri Schiavo's case is every family's nightmare. But disability doesn't have to be a nightmare. Even if our nation disagrees on how we define compassion, we must certainly agree that all lives are equal under the law.

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