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December 02, 2005 | Read comments | Post a comment

The 4Ws

Soon the Supremes will rule on Gonzales v. Oregon, the case about Oregon's right-to-die law.

And so I'm back to blogging about the issue, as I threatened to do a month or so ago.

Disability rights groups who oppose Oregon's "Death with Dignity" law-- and who have as a result sided with the decided anti-rights Bush Administration (Gonzales) because the Administration opposes the law -- have come under fire from others in the movement. And the rancor became public late last summer.

It's rare that disagreements within disability rights circles ever draw the attention of the larger society, so it was interesting that this one did.

Awhile back I talked to Professor Lennard Davis, the UIC disability studies scholar who'd gone on NPR with his frustration at the movement's anti assisted suicide wing.

But for me the issue hasn't ended with listing Prof. Davis's concerns.

And so I've been thinking about the issue, thinking about what Lenny Davis says, and about what Prof. Paul Longmore says on the other side of the debate. I'll devote a full blog entry to Prof Longmore's thinking in a little bit.

But today I want to blog a little bit about a way in, a way of understanding this issue in a larger context than simply the facts about Oregon's law (about which more in a later blog, also).

Any minute the Supremes could rule. Or they could put it off till late next spring, as they sometimes do with big controversial decisions.

I have my thoughts as to how they will rule, as does everyone, but this isn't a blog about point spreads, so I'll leave that alone.

The safe thing to say is that no matter how they rule the issue isn't going away, any more than the abortion "debate" would go away if the Supremes overturned Roe v. Wade.

Both abortion and assisted suicide are similar in that they are issues that have to do with our culture rather than our laws. And so legal maneuverings one way or another simply form the field upon which the skirmishes occur. At least that's how it seems to me.

In looking for a way in, the thing I find myself returning to is something I heard first from Diane Coleman, head of Not Dead Yet. Nearly a decade ago, I heard her refer to the people driving the right-to-die movement as the "4Ws": the "white, worried, well-off well." I don't know if she coined the term but it's stuck with me all this time because it's so apt.

The demographic which continues to drive the right-to-die movement is made up of people who are largely white middle class, certainly liberal ("progressive," as we call them in progressive circles -- go figure!). The people behind the laws are for the most part -- no, not entirely, but for the most part -- people who as yet are healthy, without disabilities, and nowhere near death.

But they worry. That's the 4th "W." The worry about an "undignified end." They worry they'll get cancer and "the pain will be unbearable." They say they worry about being "hooked to machines" in a big impersonal hospital, all but dead but with the medical rules not allowing them to be unhooked. They worry.

OK, you say -- but so what? Why does the fact that 4Ws are behind this issue seem so significant? The significance, for me, is that the breakdown seems fairly stark: they're for it, and other groups are against it.

The disability rights movement has railed publicly and privately about how this issue is framed by the media as the right to die vs the "right to life" groups, leaving out disability rights opposition as its own distinct voice. But the public framing of this debate leaves out a bunch of other group, too. Surveys show that African-Americans tend to oppose legalization of assisted suicide. So do Hispanic groups. So to people in lower income levels.

Taken together, that's an awful lot of different kinds of demographics. It's really simplistic to say that these folks are all driven by conservative and/or religious values.

I think there's something different driving them: a lack of trust in the U.S. healthcare establishment. Even more broadly: I think it's driven by a fear that legalization of assisted suicide will mean it could somehow be used against them. Somehow. Even if not through this particular law, or that one. Even if it can't be proven. Just because it's an inchoate fear doesn't mean it's not a valid one.

Or maybe it's not valid. But to me that's not really the point. That their fears may be unrealistic -- as people like Prof. Davis have suggested -- does not mean that they're not real fears. Another way of saying this: reassurances that x or y will not happen, or that the laws have safeguards, does nothing to mollify such fears. The fear is really about a lack of trust in the establishment, a real -- and valid -- knowledge that they are for the most part powerless against "the establishment." Minorities and the poor tend to view things this way. And it seems a brief look at history is more than enough to show us why.

But the 4Ws on the other side are also driven by fear. They fear, they say, the end of life "tethered to a machine." They fear loss of autonomy, they say.

That both sides are operating out of fear interests me a lot. It makes me start thinking about the role of the fear itself.

More later.

Posted by mjohnson on December 2, 2005 09:09 AM


For those who think being "kept alive by machines" isn't a steady state condition I dare to point out that if you think you're not already in the "hands" of "life support systems" (often prefaced with "artificial"), you are delusional.

In fact the people shown on the huge farming machines that clearly support us are now essentially passengers with no control over the process or its means.

It's oft-repeated that we have gone from a life wherein 8 people were needed to feed 10 to one where it takes 0 to feed millions. The state is as obsolete as "jobs". The idea of "meaningful employment" has become absurd as we find increasing time to comment on one another's comments!

The bible thumpers would have it an essential to have some prescriptive basis for our existence, which guidance comes from books written long ago in another unused language at the behest of those who claim a special connection to some supernaturality whose existence is clearly impossible but not unthinkable!

On the other hand somebody wins the lottery, it just doesn't turn out as expected because somehow inside, despite the prevalent secular humanism we share, we want to end war and feed the starving babies.

We have operated from a zero-sum illusion of being ruled by scarcity that we can't even accept that there's not just enough for everyone, there's likely too much.


Posted by: William Loughborough on December 2, 2005 10:10 AM

I've thought a lot about this issue and I don't know where I really stand, personally. I can see both sides and I think there are concerns on both sides that are valid. Having a living will is the easiest way to deal with this issue, I think. If you're conscious and want to die, like in the case of lingering cancer patients...I guess a part of me says you should have that right and another part says that nature should take its course.

Tonight I just went to the wake of my next-door neighbor, who has cerebal palsey. She died of esophegeal cancer - dehydration, actually, because she couldn't drink anymore. It was a relief when she died, because she suffered so much. She's a very Catholic woman and I know she'd never got for assisted suicide. However, if she hypothetically felt different and that's what she wanted - I think that her wish should have been granted. It would have saved her a lot of suffering.

Personally I am pro-choice, but I can respect the views of those who are not. So I guess it would be logical to say that I am pro-choice for people at the end of their lives as well. When it's appropriate or not and how that's done is so individual and fuzzy that it's really hard to make a blanket statement about it. All I know is that whatever the decision, the government shouldn't be making it. And if they shouldn't be making the decision, then they shouldn't be preventing it either. They should just butt out.

Posted by: The Angry Gimp on December 2, 2005 11:13 PM

There is another way to look at the beginning of life/end of life arguments.

There is a group called The Seamless Garment Network who are too busy and inclusive to thump books, much less just the Bible.

Their stance is that of a consistent ethic. If one is against abortion, then you would also be against the death penalty - even one you give yourself or a loved one.

Some believe all life is precious. Some believe that you don't have the power to either begin or end life. For these folks the proper response is respect for all the living - disabled or not.

The consistency is appealing to some crips who see the ADA and section 504 on paper and then see the Oregon Right to die stuff in vogue, too.

I personally try to stay out of it all now. That painful choice came after I wrote basically the same article about the facts of the Schiavo case for the Florida Humanist Society newsletter, the Right to Life newsletter, and a disability publication in the same month a couple of years back.

Individuals in each group then spent weeks tearing I and my family apart personally for belonging to one of the other groups that was not them.The situation would have been funny had it not been so sad, incorrect and small a response.

Having realized that there was no way to truly convey what it was like to live at Ground Zero of the Right To Die debate at the time, I gave up.
This is the first time I have written almost anything since.

Perhaps, a crip who can see more than one viewpoint at a time - while at the same time knowing the "quality of Life" sword remains dangling over all our heads - has no real community.

Last thought -
It truly is the educated, upperclass, white folks full of "Feararrongance" pushing the Right To Die Agenda. They have the arrogance to believe disability can never really happen to them while also knowing in a very deep way the fear that it mostly certainly can and will.

There you go then...a few words from one whose fate as a baby crip once was at risk of being decided by a future bioethicist family member and a younger pre-disabled Dr. Paul Spiers of Hemlock fame.

Posted by: Rus on December 3, 2005 05:01 PM

Nonsense, Rus.

Most of us who support the right to end our lives if we become severely incapacitated or terminally ill are simply realists. We know that the quality of life under such circumstances is not worth maintaining.

As for this:

Some believe all life is precious. Some believe that you don't have the power to either begin or end life. For these folks the proper response is respect for all the living - disabled or not.

Nature gives everything a "life sentence" if you really want to use that biased language. Real pride and arrogance is to try to ignore when someone is no longer functional enough for it to make sense to continue living. Or, to have that non-functional person maintained on life support wasting needed resources. Most people grasp this intuitively. That is why there was so little support for the charade of Terri Schiavo being a just a disabled person who needed therapy. Continuing to keep a body alive on life support after the brain ceased all but basic functions 15 years earlier struck most folks as a rejection of common sense. There wasn't a person there, just an empty shell. Having embraced that extreme position, you prove yourself to not really be part of a dialogue about when it is time to end life support, but a pro-life zealot.

Posted by: June Gordon on December 4, 2005 08:46 PM

Okay, so it's a "right to personal choice" to decide to kill yourself. After all, we support a right to choice.

How about a teenager? What if he turns 18 or 19? After all her boyfriend just broke up with her. How can she go on? That pain is real to her even if it isn't real to us.

Oh, she's depressed. So it's okay to want to die with a physical condition, but not if you have a mental illness? Why not?

What if this is a pattern that has lasted her 18 years? What if she's 30 and it is still there? She still hates life. She is still depressed. But for whatever reason can't kill herself, or doesn't want to, or wants a way that is less messy and painful? Why shouldn't she get help ending it? Why should we descriminate aganist her?

And why is it different now that she is 30 than when she was 18? Who are you to decide how long suffering must continue?

What about a mentally ill man? Is that okay?

Or someone who's mental facilities have deteriorated with age? No one wants to face that, after all. But can you make a good decision in that condition? Can you now - not having experienced it?

That's my problem. And, yes, I do agree with Rus as far as not having a place in the disability community if you happen to disagree with any part of the progressive platform. You feel very alone sometimes if you don't disagree with, for example, the war in Iraq. Nevermind that we should be fighting for disability rights...there are plenty of other groups fighting for and against the war in Iraq, but for some reason this and other progressive issues have become part of the disability movement.

Posted by: Joel on December 5, 2005 09:05 PM

Joel said:

And, yes, I do agree with Rus as far as not having a place in the disability community if you happen to disagree with any part of the progressive platform. You feel very alone sometimes if you don't disagree with, for example, the war in Iraq. Nevermind that we should be fighting for disability rights...there are plenty of other groups fighting for and against the war in Iraq, but for some reason this and other progressive issues have become part of the disability movement.

I disagree. Your arm of the disability movement is in bed with the Right. It became clear to me during the Schiavo saga. Y'all were right there with that nasty priest and Randall Terry. Ditto for abortion and asisted suicide. If an issue involves decisions made about the body, disability militants value maintenance of the body over personal autonomy. There's no respect for people's right to make their own decisions, or for the need to allocate society's resources as equitably as possible.

Nor do I find your effort to compare clinical depression to a vegetative state at all persuasive. Depression is usually short-lived, and can be treated with drugs and talk therapy. The person hss lost none of his abilities. Vegetative states are permanent. Most of the person's abilities are gone. There is no treatment. I hope you have not been laboring under the misconception that Terri Schiavo was no worse off than a depressed person. That would be pathetic.

Posted by: June Gordon on December 7, 2005 02:43 AM


While I respect your right to have a different opinion I find your arguments to be rather dogmatic and intent on mis-representing the disability movment rather than as you called it "participate in a dialog"

Perhaps it is an oversite on your part or a mis-understanding but frankly when my life was on the line (and it was) I could have cared less about what political background any of the concerned parties had, those things just don't matter any more. I like living and I like contributing to society. The failure of individuals like yourself to recognize the validity of and inherent authority of individuals with disabilities on the matter is a reflection of current cultural attitudes towards the disabled that ironically(?) started with the same sort of "common sense" arguments that you make.

This is why all these arguments for eugenics and "life unworthy of life" sound so similar and probably why, when I hear them I think of the Nazi T4 program (an idea, stolen from the American "scientists").

The ideas that you are expressing come from old school "layperson scientists" in the late 1800's who misinterpreted Darwins theores on evolution, and from early capitalist and socialist ideas of normalcy (ie. if you can't work 40 hours a week you are a "deviant", "invalid" and don't count or don't get counted as the case may be).

While all of these ideas are relativly recent when taken into historical perspective of human kind, they where originally concevied by a bunch of white slave owner males and used by them to try and create a world full of people just like themselves. The same guys ran around measuring sculls by filling them with beans or rice in order to prove how smart they where and how dumb everyone else was. That's the plain honest truth of the matter, all these ideas where founded in an environment of profound biggotry and ignorance and quite ironically where another mis-interpretation of Darwins theories only this time by the "scientists" of the time rather than some "right-wing christians" of today.

Certainly these guys where convinced they where doing the right thing but the results have been devistating on social, economic and political life for individuals with disabilities. They left deep scars still found in much of modern life, the way our school systems grade people, the fact that women and african americans where considered to be inferior and the idea that individuals with disabilities are considered to be burdens rather than the perfect examples of Darwins proposed evolutionary engine where all ideas that where defended and put forth as sound scientific reasoning and "evolutionary" thinking by this same group of men.

But the fact is that they are amazingly wrong, hurtful and highly damaging ideas and ultimatly lead the the Holocaust (after getting the techniques worked out on German children and adults who were blind, deaf, physically dis-abled or mentally handicapped, epileptics, orphans, juvenile delinquents, non-conformist youth, Children with cerebral palsy, other neurological conditions, Down Syndrome and so forth the Nazis only then began to widen the policies to include Jews and other groups of individuals they determined where inferior.) In fact the T4 "good death" program originally started out as a free community service" availible to Germain families only.

I would not for a moment propose that I have any right to speak for women or african americans, or any other group that I am not a member of but I suspect that you either have not been disabled very long or that you are not yourself disabled or you might have some very different opinions about "the right to a dignified death".

Where do you draw the line? Who gets to decide? How is this any different from the T4 program?

Posted by: Chris Steel on December 7, 2005 04:12 PM

There's another fear that hasn't been addressed: fear of government authority. The alternative to giving people the right to choose whether they live or die is to put the decision in the hands of the government. And that means either way: The government may not allow use of medical means to help you die, but it equally may not allow medical means to keep you alive. And if this is the government's decision to make, I have no confidence the powers that be will choose to spend much in the way of medical resources on older people or disabled people. (I suspect that if it were up to the government whether I got medical treatment, the fact that I'm 69 years old would count against me more heavily than the fact I am legally blind. My limited vision doesn't keep me from working, but my age means I won't be working a lot longer.)

I don't really think I would ever want to end my life. As Woody Allen put it, "I intend to live forever or die trying." But the only way to keep that option open is to insist that it's my choice and no one else's. Especially not the government's.

Posted by: W. A. Thomasson on December 8, 2005 02:12 AM

I feel a split approach to this issue.
It seems that it has both INDIVIDUAL as well as POLICY aspects to it. As an individual, I might feel a fear that my condition may feel unbearable and I would have "no way out."

But as POLICY, assisted suicide, seems very problematic to me, because it would exist in the context of an unjust culturally defined attitude that anyone who cannot produce goods & services, has no value and should want to kill themselves.

In such an unjust context, assisted suicide POLICY seems a way that the not-yet-disabled can get those who are, or who become disabled, to kill themselves. Then the non-disabled would not have to bear having disabled people in their midst. And what better way to rid society of "undesirable" disabled people than to have their elimination appear to be THEIR OWN CHOICE? (i.e. get them to will it themselves). This seems genocidal to me.

The "ugly laws" that said it was illegal for people with disfigurements to be seen in public because it would offend the sensibilities of "normal" folks was blatant, and most people would recognize that as terribly unjust.

But it may be harder to recognize that creating a culture that ingrains the attitude that those who can't produce have no reason for being, and then arguing for a policy to allow them to kill themselves, would also be unjust and genocidal in its effects.

Posted by: Dennis on December 8, 2005 05:08 PM

Much of the opposition to end of life choices for the terminally ill seems to come from misinformation.
The law gives ONLY the terminally ill patient to power to choose a compassionate end of life.
Individuals with disabilities DON'T QUALIFY, unless they are terminally ill.
People with disabilities are not eligible for this prescription.
Right now, the government makes the choice for all the terminally ill - individuals have no right to make their own choice.
It's the terminally ill who benefit from this law.
Opponents want to change that focus because they can't straight-up argue to deny those WHO ARE ALREADY DYING the right to choose to end their suffering a little sooner.
Also, public opinion polls in California and the U.S. consistently show that majorities of all ethnic groups, of physicians, and even of Roman Catholics support this choice.
Opponents want to impose their own personal or religious morality on all the rest of us.
That's not choice, and it serves no terminally ill individual.

Posted by: Steve Hopcraft on December 13, 2005 02:11 PM

Steve writes "Individuals with disabilities DON'T QUALIFY, unless they are terminally ill."

Funny, Jack Kevorkian and his supporters said basically the same thing. Then, as now, the news media and much of the dominant culture initially dismissed the disability rights opposition to assisted suicide as paranoid, unsubstantiated, fear-based.

Yet in the end Kevorkian's efforts to advance the 'progressive' right-to-die agenda resulted in the deaths of many non-terminally ill people with disabilities. That's a fact, "scientifically" proven through the autopsies. A bit late for the disabled victims though, eh?

So forgive those of us who opt not to wait around for more disabled body counts. If there is ever a time to pay attention to the lessons of history so that we avoid repeating the same mistakes, this would be it.

Posted by: Sharon on January 4, 2006 07:39 PM

Furthermore, history shows that terminally ill people have been able to hasten their deaths if they so desire for quite some time and without any help from 'progressive' do-gooders or 'well-intentioned' legislation.

Yet some now want a larger menu of suicide choices, including a “to go” entree. They want to make suicides more common (read: some don't want to feel guilty about opting for suicide) and they don't seem to mind taking down the lives of non-terminally ill disabled people with them.

Why does mainstream culture and even some who call themselves disability scholars/allies continue to expect people with disabilities to risk and to sacrifice our lives so that others, such as the 4W's, can "feel good" about having a wider range of suicide choices? When will we stop being seen as the expendable canary in the coal mine whose sole purpose is to calm the fears of others?

Posted by: Lamp on January 5, 2006 03:41 PM

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