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How About the Right to Live?

By Diane Coleman DC

John Williams is a regular and distinguished contributor to Independence Today , but I was still shocked that his article “Can't We Make Our Own End-of-Life Decisions?” ( made it into print in an independent living publication.

The article's title is not the problem. We can indeed make our own “end-of-life” decisions, pulling the plug, refusing medications and treatments, writing advance directives, appointing a surrogate to speak for us when we can't, and more.

But Williams was talking about something else, conveyed by describing an encounter with an 82-year-old man in a doctor's waiting room. After talking about how the gentleman was using various assistive technologies such as a CCTV and voice recognition, Williams' forte, the conversation turned:

“Despite all this technology and medications, my quality of life sucks. . . [F]or all the pills I pop daily, I go through the humiliation of having my wife or son dress me daily. It's embarrassing to have my wife put my underwear, socks, shoes, shirt on me most mornings. It's disgusting to wet myself, and I'm unable to change wet underwear. I want to die. However, I'm Catholic, so suicide is not an option.

"A day after my conversation with Harold, my 80-year-old father-in-law died. He had been sick for a number of years. He had told me numerous times over several years that as he aged and confronted numerous ailments – he took 18 medications daily – that he saw his quality of life deteriorate, and he wanted to die. Like Harold, my father-in-law questioned the wisdom of keeping seniors alive when they could no longer live with independence and dignity.

"For years, I have questioned the policies of keeping people alive who are a burden to themselves and their families. I know that I do not want to live if I become a personal and financial burden to my family and community ... " [ Emphasis added.]

Like a deer caught in the headlights, I confess I was too shocked to know how to respond on behalf of those of us who need attendant services. This newspaper gets national circulation. What about all the young people with disabilities who need Medicaid attendant services who might read this?!

With miraculously good timing, one approach to a response came to me through a listserv message sent by a much wiser advocate than I, another IT contributor, Mike Ervin, aka Smart Ass Cripple.

"Every time I take a leak, it costs the state of Illinois 38 cents. The state pays $11.50 per hour to the people I hire to help me take a leak. That's about 19 cents a minute. I guesstimate that on average, each leak takes about two minutes, from unzip to zip. If I leak four times daily, on average, that's $1.52. Extrapolate that out over a year and that's $554!

"Each time I sit on the crapper, that's about 20 minutes. So that carries a price tag of $3.80 a day or $1387 a year. That's $1941 of taxpayer money eaten up by one man's bodily functions!

"And that doesn't even count all the other stuff my workers do for me, such as putting on my pants ($208 a year), brushing my teeth, ($244) and making my armpit smell like a cool sea breeze ($226).

"There's no doubt about it. The numbers don't lie. I am a burden to society ..."


Too bad this satire, and the “smart ass” attitude about disability that it reflects, hasn't hit mainstream culture yet. Thirty-five percent of people who died from assisted suicide in Oregon reportedly requested a lethal prescription because they felt like a burden on family and others, while 56 percent had issues pertaining to loss of control of bodily functions, and 84 percent were concerned about loss of dignity. In fact, almost all of the reported assisted suicide concerns are not about dying, but about disability. (Oregon Reports,

If feeling like a burden is viewed as justifying a state-sponsored and doctor-prescribed suicide, in contrast to the suicide prevention that people get if they are not old, ill or disabled, what does that say to others who need attendant services? How many articles have I seen about the burdens of care giving, written from the perspective of a family member or service provider? Should I feel guilty? Do others see the costs of my existence as too high? If a social worker offers me a do-not-resuscitate order, do I have a duty to sign?

For years, most assisted suicide proponents repeatedly assured us that costs would never be an issue. But now, with attendant services facing budget cuts across the country, some people who would rather die than go to a nursing home may already face that so-called “choice.”

Even back in 1998, the co-founder of the Hemlock Society, Derek Humphry, and Mary Clement were bold enough to write, “[O]ne must look at the realities of the increasing cost of health care in an aging society, because in the final analysis, economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.” ("Freedom to Die: People, Politics, and the Right-To-Die Movement ," p. 339)

The National Council on Independent Living adopted a policy position against legalization of assisted suicide in 1997. The issue is controversial. The pros and cons can be discussed.

But when a prominent writer in the disability community says, “ I do not want to live if I become a personal and financial burden to my family and community,” and that message is published without caveat in an independent living newspaper, then there's cause for concern. I hope that Independence Today's editors will conclude that there's a duty to counter the potential effect on people with disabilities, young and old, who should not have to see such a devaluing message in a respected disability movement publication.

Diane Coleman is president and CEO of Not Dead Yet (

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