How About the Right to Live?
By Diane Coleman
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? (http://www.itodaynews.com/pdf/issue_31.pdf)
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
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
"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!
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 (www.notdeadyet.org).