I do not think that the
Terri Schiavo case was about "right-to-die" or
was easy, and lazy, to report it that way. As able-bodied busybodies
fought in the media and viewers gawked at mysterious animations of
feeding tubes, there was little attempt to hear the true experts on
guardianship and tubes. I
don’t mean bioethicists. I
mean people with disabilities. This particular case had to do with
guardianship and advance directives. It sparked anxiety by reminding us of
the fact that nearly all of us will become disabled at some time, some
permanently, and that no one gets out of life alive. Most of us will
not become incompetent, however, except when we are already actively
Some of the public debate
Schiavo case was about costs, the expense of caring for Terri Schiavo
and/or her body. The focus on costs underlies many of the "futile
care" laws which have been passed in several states. The Texas futile
care law, which was signed by George W. Bush, was used to justify the
"let him die" death
of a baby over the wishes of his mom during the height of the media focus
The reason so many
disability rights activists are against "death with dignity"
laws is because the culture has not discussed "life with
dignity" yet. Personal care assistants, assistive technology,
employment accommodations and independent living resources are not special
privileges, but basic civil rights. It is 2005 and few Americans
seem to think that way. There is an appalling tendency to focus on
costs and privatization without even examining most of the options.
There is also a tendency for monied interests to simply lie about costs.
For example, personal assistive care for a person living in their own home
is often cheaper, and certainly more controlled by the individual and more
supportive of independence, than is living in a nursing home.
But Medicare funds, the federal funds that cannot be easily capped, are
what pay for nursing home care. Block grants to states and Medicaid
are what pay for PAS (personal assistive services) and they are subject to
rethinking, caps, redistribution. They
are vulnerable and limited in ways that nursing home payments are not.
Americans still cherish the idea that no one is against "the
disabled", and therefore folks with disabilities are not considered a unique
minority community - like Blacks or GLBTQ so disability rights
is not recognized as a civil rights issue. The
concerns and perspective of disability activistswere generally ignored in
the media circus around the Schiavo case, perhaps since it is easier to
present it as a simple dichotomy of the "culture wars."
Disability activists were assumed to be an exploited wing of the
"right-to-life" movement, when they are noted at all in the
Schiavo coverage. When the voices of folks with
disabilities were presented, it was usually only as prop to one of the two
sides of this one case. While the Schiavo case has had the
potential for some genuine democratic discussion, I think it has shown how
unpracticed Americans really are in useful, thoughtful debate, how
unpracticed we are in democracy.
Guardianship is not the
simple privacy, keep-it-in-the-family, issue that many of us wish. Most elder abuse, and most abuse of people with disabilities, is
carried out by family members and guardians. Spousal abuse, child
abuse...when folks are hurt by folks they know, it is usually by folks who
have the power of love and/or livelihood on the victimized party.
Because of the potential for abuse by guardians, some disability activists
are pushing for precision in laws to insure that all means available are
used to be certain of the wishes of an "incompetent" person,
including being very sure that the person IS incompetent. When there
is a perception of incompetence due to inability to communicate, we must
bring to bear all the newer assistive technology that has allowed some
folks, previously unable, to clarify their thoughts to those around them.
And, in doing so, we must be wary of such wishful thinking quackery as "facilitated
Our social awareness of
disability is still steeped in unexamined myths, such as:
including telethons and footraces; Tiny Tim needs help from the
they are all buggered up and need to be fixed; it is not an issue of
justice, but of medicine; Tiny Tim needs an operation,
---Overcoming/Inspiring: "Wow, look how much that poor sap has
accomplished even though he's all buggered up, what courage, what an
inspiration!" Tiny Tim can still smile, bless his dear little heart,
"Wheelchair-bound" is a personal peeve. "Confined to
a wheelchair"? Wheelchairs are technology that free people to be
mobile, independent, on your street and in your face. If I did not
have eyeglasses I could not drive, but no one laments that I am
"spectacle-bound". If someone uses a Braille display
instead of a computer screen, is she any more dependent upon her computer
than you reading this?
of our fear of severe disability is fear of the unknown. I know some folks who use urinary
self-catheterization to empty their bladders. Some of them are
partially paralyzed, but most have "invisible" conditions.
Well-meaning people lament, "Oh, that's too bad. Every time they
pee? I wouldn't want to do that, that's awful!" And so on. If
folks are so dismayed, grossed out, and afraid of something easier
and quicker than flossing their teeth, how can they think they know what
they would feel like with various disabilities? Yet nearly everyone
holds assumptions based on small imagination and a lot of fear.
Very often folks' fears are related to poop. There is an unexamined
idea that, once potty-trained, pooping is shameful, and exponentially
more so if we, as individuals, need help with any poop related activities.
Poop is the surrogate for all our fears of loss of bodily control. I
once had a patient express suicidal wishes right after a
colostomy. He would not even look as I did his colostomy care, and
did not want to have anything to do with learning how to do it himself.
Yes, he got over it, and did great colostomy care.
I have helped folks with
poop who have had both temporary and permanent conditions that precluded
poop and pee self-care. I have taught men to self-cath after cancer
surgery. Nearly all of these people were matter-of-fact about it, as
was I. Hell, most folks do not know how to floss their teeth until
someone works with them. Or tie their shoes. There is
nothing in assisting someone with homecare that is essentially
undignified. Yet much of the webchatter around Terri Schiavo, and in
talk about what a drag some disabilities are, including progressive
disabilities common to people getting old, obsess about poop. I know
that poop can cause problems (skin
breakdown, abdominal distension, et cetera, depending on you particular
poop deficit), but almost no one who worries about poop in the abstract
seems to be worried about such actual health issues with poop; they
are concerned, rather, with the physicality of poop itself. They
dread something they imagine, not something they experience. Yes,
poop smells, whether it comes out of a baby, a dog or an adult human.
Do we think of poop-scooping and diaper-changing as
From a 2003 essay by
Ingrid V. Tischer
my opinion, the women's movement doesn't know how to be revolutionary
anymore. Even worse, they are ignoring the connection between stigma,
silence and oppression. Where once it taught us to say "vagina,"
now it gets stuck on "poop." Women who understand the political
importance of talking openly about menstruation start looking at the floor
when talk of incontinence comes up. Women who comfortably disclose their
race, age, and sexual orientation at work hide their psychiatric
medication.... Disability rights issues could redefine the women's
movement. If the women's movement avoids the Schiavo case, it will be
choosing not to grapple with the issues that will be facing more and more
women in the coming years. They are issues of dependence and control, the
classics of the women's movement that, unfortunately, never go out of
style. The issues .......are the headlights of the car speeding right at
every older woman, every chronically ill woman, every woman with a
disability in this country. You don't have to tell me it's scary as hell
to be standing in the middle of that dark road. What gets to the point
faster than hearing a woman with a disability say, "Incontinence is
not all incongruous with my having a dignified, meaningful life"? Is
it possible not to respond, even if all you do is mutter, "Oh my god,
I can't believe she just said that,"? Just try to find a more daring
example of self-worth than a woman telling the world she deserves what the
dainty call "help with personal hygiene."
There is the
"burden" fear: "I don't want to be a burden" and, “I
don't want to have to see/care for my beloved ‘that way’ “.
Yes, caring for another is a burden. Not always an onerous burden, certainly
a most rewarding chore to some folks, but still a chore. And a social
burden. A century
ago, families were ostracized for having a disabled member.
Care and expense were considered the responsibility of the family
alone. In an era that widely
held the myths that congenital disabilities were due to bad breeding and
later misfortune was the wages of sin, folks with disabilities were often
kept out of sight. Today, we
still, as a society, do not acknowledge our interdependence, nor our
responsibility to one another. The
welfare state, conceived for the welfare of all, is slashed under the myth
of promoting “personal responsibility.” We are told that we are no
longer “my brother’s keeper.” Or
that our unfortunate brothers need our charity. Disability rights is a
class war issue, but rarely acknowledged as such.
While the Schiavo case
does not apply to most "death with dignity" acts written specifically for lucid, competent, terminally ill
folks, perhaps we can use the publicity over this one case as an opening
to discuss the reasons we, as a culture, should be having conversations
about severe disabilities so we do not end up with a system like
Holland's, open to abuse. I used to think The Netherlands had a good idea,
but I really knew little about it. In
practice, palliative techniques may have stalled in their development, and
some people are declared incompetent so guardians may have them euthanized.
Crazy to Live
Many in the disability
community are concerned that a desire to live will be used as evidence of
incompetence, since they have repeatedly heard that "no one in their
right mind would want to live like that". This scares many
disabled activists. It scares me. As they read blogs where folks say
"Michael Schiavo has been chained to a drooling shitbag for 15
years", our fellow citizens who are themselves "drooling
shitbags" take notice. http://www.commondreams.org/views05/0322-20.htm
When folks in rehab are
told, by people involved in their care, “If
what happened to you happened to me, I'd kill myself,” how
frightening to think that someone you cannot run from might think they
were doing you a favor putting a pillow over your face. http://www.nwherald.com/StyleSection/338073232987325.php
Individuals must be
respected as individuals. No, there is no monolithic Disability POV,
but there are far too few folks with disabilities even involved in the
discussion. People like to project their own fears and imaginings
onto severe disability, but seldom talk to those living with them. This is why
I find those "disabled for a day" exercises so dumb (where
non-disabled folks wear mittens or blindfolds or use wheelchairs).
And, in post after post I have seen on the internet, folks are obsessed
with the "dependence" factors. As if we are not all
interdependent. I don't grow my own food or fix my own car; I pay
others to do that. If I had to pay another to help me brush my teeth
or drive my car or wash my "privates", how is that so
distinct except by habits of thought? It has become increasingly clear to
me that our culture still clings to myths which obscure the
individuals who happen to have disabilities. It seems so obvious to me
that there is a culture-wide discrimination, an institutional bigotry,
when it comes to disability, but folks hide behind their righteous
assumption that there is no "animus" involved, that "no one
is against The (Truly) Disabled", that my attempts to equate
disability discrimination with racism or sexism or homophobia are seen
as just silly. "They" need a fix, a cure, charity, and
some ramps. And if they have a disability that is not obvious to a
casual onlooker, then they need to just quit whining. The idea that there
could be a distinct minority of 53 million in the US just does not make
sense to most folks. Including most disabled folks.
This essay is meant to
ask more questions than it answers. I truly, perhaps stubbornly, have
no final opinion about what should have been done in the Schiavo case. I
am not any of the players, and I do not have all the information.
Much of the documentation, from several cases and many years, is
unavailable to the public. It is telling that 36 judges so far have come
to, or deferred to, the same conclusion: Michael Schiavo is guardian and
his choice should be carried out. My projection into this case
is just that, projection, speculation from where I stand. My
opinions are the under-informed musings of a working class citizen.
The Terri Schiavo case is
highly unusual. While aspects of it happen daily in the U.S., they are
rare, and this particular set of circumstances is unique even among
persistent vegetative state (PVS)
cases. We have laws and courts for unusual cases. Good, not perfect. But
the system of checks and balances is increasingly undermined by
executive branches throwing their weight around. And if the executive is
named Bush (Jeb or George W.) they seem to think the Constitution is just
an inconvenience easily ignored. Tom DeLay is, as Michael Schiavo said,
"a slithering little snake". The White House and Congress have,
to the disgust of the vast majority of citizens, stomped in like a bunch of
self-righteous windbags, using one family's tragedy, which has already
been drawn out to terrible lengths, for their hypocritical
grandstanding, further shredding the Constitution. They love to
think they are mesmerizing "their base" with the words
"God" and "life" and "right" but even the
most hypnotized of their followers are looking behind that
curtain, and seeing the fallible faker of a wizard who has been fooling
them. Every time I think the Christo-Fascist Bush Brigadiers have
gone as far as they can go, they go further. And further.
Vermont Death With
I am not very strongly in favor of Vermont's proposed Death With Dignity
Act (VT HB 168 link here)
is something my ACLU friends are
surprised at. That I am not very strongly opposed to it is something
my "Mouth" magazine and "Not Dead Yet" friends
are surprised at. It seems a carefully worded law that specifies true
end-of-life issues. From the bill: "This bill proposes to allow a
mentally competent patient who is expected to die within six months to end
his or her life in a humane and dignified manner by prescription
good. The concern some have expressed is the definition of
"terminal condition" is too vague. "Terminal
condition" means an incurable and irreversible disease which would,
within reasonable medical judgment, produce death within six months."
A friend asks, does someone who would die within six months include
someone who would die within six minutes without his vent or six weeks
without his feeding tube? This is truly a concern. The law should be
more clear. There is also a whole lot of wording about
"Immunities" that protect the medical doctor from any sanctions
at all as long as he/she acted "in good faith", which phrase is
a very vague and nearly impossible to disprove standard. My biggest
concern about the "right to die" idea is that it seems to let
society off the hook for providing the right to a decent life.
you want to have a say in the treatment of your body in case it survives
you, speak up, to family and friends, and in writing, now. With
witnesses, preferably notarized. You can find plenty of
state-specific links to customizable, downloadable advance directives.
Check your state's Secretary of State website, or any statewide
bioethics sites. have another motive in wanting you all to have advance
directives: ORGAN DONATION. My son, Flang, has a lovely kidney that
Jozef donated. Thousands of folks could use your
organs, including Flang in the future. If you no longer need them - a
situation that happens without warning in most cases - will anyone
know that you were willing to let them be used by others? Please
fill out that part of the advance directive about organ donation.
And if you have not gotten around to checking off and signing an organ
donor section on your drivers license, do it now. I mean now.
Go do it. Thanks.