Disability Pride Parade Rally 

July 18, 2004

EDITOR'S NOTE: Diane Coleman is the President and Executive Director of Not Dead Yet. On July 18, 2004, Ms Coleman gave this speech at the Disability Pride Parade Rally in Chicago.

By Diane Coleman

When I was six, my doctor told my parents that I would not live past the age of 12. The diagnosis changed later, but respiratory weakness would be an issue. I have friends who use nighttime ventilators, so I knew the symptoms, and started using a breathing machine at night two years ago. Before I came to Illinois, I had two friends, one in her 30's and one in her 50's, who needed the same thing. But their doctors discouraged them, and didn't tell them what would happen as a result. Eventually, they each went into respiratory distress, and died within a month from infections. 

Some pro-assisted suicide and euthanasia advocates have accused Not Dead Yet of being a puppet of religious or pro-life groups. We respect the efforts of our allies, but it's always been an uneasy alliance. From our point of view, this is not about sanctity of life, and we object to those on either side who frame this as a pro-life vs. pro-choice issue. But for many of our civil rights allies, it's been hard for them to understand. Isn't assisted suicide about individual autonomy and rights, they ask? No, we say, it's about discrimination and a profit-driven health care system. 

People with disabilities live and die on the front lines of that system and, frankly, we don't trust it. Eleven national disability organizations have joined Not Dead Yet in opposing assisted suicide. Why? Shared, collective experience. People could think of us as the canaries in the coal mine of a health care system that openly denies us necessary health care in order to save money, including services older and disabled people need to live in our own homes instead of being forced into nursing homes. 

The growing assisted suicide and euthanasia movement is just an extension of a familiar devaluation. An individual's right to refuse treatment is one thing, but legal immunity for your doctor, caregiver or someone else to kill you is not a right, it's a threat. 

How could we be considered paranoid when Princeton University hired Peter Singer for its bioethics Chair. He advocates the killing of disabled newborns, and that families should be able to kill people of any age who don't meet his mental test for personhood. 

In 1997, Not Dead Yet rallied at the Supreme Court. In a way, we won, because the Court found that there's no federal right to assisted suicide. But in a way, we lost, because the Court allowed states' rights. The Court also gave states rights to guardianship laws. 

We recently learned of a Kansas guardianship law that allows any guardian to remove any form of "artificial" life-sustaining treatment from a person, just by showing that the person needs the treatment to live, even just tube feeding, nothing about being terminal, nothing about an advanced directive, nothing about any form of best interest. The Kansas judges say they're already issuing the required court order every time somebody asks for one, in other words, large scale killing of people with disabilities in guardianship. It's unconstitutional, but it's happening. 

Frankly, the Kansas statute has shaken me. The only way it could have been enacted is by stealth, no public notice, no public hearings, just some people with a very clear agenda working behind closed doors. This is when the end-of-life care movement is distorted into ending lives seen as unworthy. 

Not Dead Yet has addressed three court cases about starving and dehydrating individuals with cognitive disabilities. None of them was terminally ill, none appointed their own surrogate, or left clear evidence of their wishes, but two are dead, and Terri Schiavo in Florida remains under the continued threat of starvation. The evidence about her condition and what her wishes would have been is so conflicting that it could not justify taking away her food and water, but the lower court has decided otherwise... This past week, 16 national disability groups (including ADAPT, NDSU & NCIL) joined Not Dead Yet in filing a friend of the court brief to uphold constitutional limits on guardianship, and feed Terri Schiavo.

States' rights are states' wrongs. We don't need to die to have dignity. We're not better off dead, and society's not better off without us. This is not the first time some people have thought otherwise. But now people with disabilities are fighting back. Some would say we're too late, but we're not dead yet. 

-Diane Coleman