Yesterday I was delighted to read Stephen Drake's latest blog entry at Not dead Yet entitled "Ann Neumann and Vancouver Sun: Dissing Disability Activists Opposition to Euthanasia". I am a self described bad cripple but I am not one prone to polemics. I leave this to others as my aim is to change people's preconceived notions about disability. My goal is not easy and I shy away from engaging people like Neumann whose writing I find infuriating. Thus I was delighted to read Drake's post and effective skewering of her take on disability rights and assisted suicide. In my opinion Neumann states many interesting things but always seem to take a wrong turn in her analyses. She acknowledges the rights of disabled people and supports their efforts to gain equality. Yet when it comes to opposition to assisted suicide, as an advocate, she takes disability rights activists to task. Two passage below from her blog the Other Spoon should suffice as examples.
Example 1: In "A Look at Disability Rights in North America" Neumann comments on a "hit and miss" article in the Vancouver Sun:
In this increasingly bitter debate, disabled activists claim legalizing assisted suicide would be an ethical "slippery slope" that would lead to all disabled people, no matter the degree of their impairment, being devalued as human beings.
In turn, advocates for assisted suicide maintain the arguments of disabled-rights activists are a misplaced over-reaction to their proposals.
Example 2: In "Jill Stanek and Not Dead Yet Shake Their Fingers at Me, I Respond" Neumann writes:
Giving a mentally-sound, terminal patient with less than six the right to a lethal prescription that they may or may not choose to take when death approaches has nothing to do with the disabled community. Again, I sympathize with the fear and vulnerability the disabled community feels toward the medical industry, the state, and society. But conflating two separate issues is just bad advocacy. With a little (understandable) paranoia thrown in
As for the first example, I have news for Neumann: if I have learned anything in the last thirty years of using a wheelchair it is that all people with a disability are not valued to some degree. There is no slippery slope involved. Just ask any paralyzed person or anyone with a disability. Better yet go to a school board meeting and listen to one and all cluck about the need for equal access and then vote down the need for that expensive elevator or lift on the school bus. There is no over reaction here . Indeed, if disability activists are guilty of anything I would argue we are too passive. We need to be more vigorous in asserting our inalienable rights as citizens.
As for the second example, I doubt Neumann goes through the same mental gymnastics or experience the fear people with a disability do when they go to the doctors office or hospital. Perhaps Neumann can appreciate the difference between the terminally ill and disabled but I assure you most people, doctors included, do not. How else do I explain comments made to me such as "I would be rather be dead than use a wheelchair" or "Are you sure you wish to receive medical treatment" or "How longe have you suffered paralysis?" A clear message is being sent and it is not positive. Indeed, it is deadly and with the right spin can be lethal in some circumstances. My existence is open to question, my life less valuable. This is not paranoia but rather a social fact. Somehow I doubt anyone has openly questioned the value of Nuemann's existence or asked her if she really wished to receive medical treatment. Frankly I do not want Nuemann's sympathy or anyone else's for that matter. What I want is support; support for my civil rights. That support starts at the beginning, middle and end of life. I have not had that support from anyone aside from my family, friends and doctor or two. What an indictment on society. How can something as unimportant as the ability to walk have such profound social consequences. Worse yet when I assert my rights I get called "paranoid" by people like Nuemann with a political goal--the legalization of assisted suicide. This is depressing to me and I sincerely doubt I can sway the views of people such as Nuemann. Hence this why I write more about disability rights than the politics of assisted suicide.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Wednesday, March 17, 2010
Disability Rights and Opposition to Legalizing Assisted Suicide
Posted by william Peace at 10:32 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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Hello Bad Cripple,
My advocacy is for patients' rights. I don't know what it's like to be in a wheel chair, nor what it's like to be black or gay or old and feeble. But as a woman, I know what it's like to have my decisions about my health impeded by the government, society, and other groups. I'm not writing to offer sympathy but empathy, that quality that binds advocates to their objective of protecting individual rights in health care delivery.
What you and I disagree on is the definition of death. Until about 40 years ago, death meant the almost simultaneous cessation of breathing, heart beat and brain function. But not so today.
With respirators and defibrillators we can sustain the first two indefinitely. CPR, 911, paramedics can make our hearts beat and our lungs breath. This is a brilliant thing; yet only 15% survive resuscitation to leave the hospital.
My point is that we have the technology to sustain life but also prolong death. And so the definition of death has changed; natural death is less and less common as we are given feeding tubes, respirators, pace-makers and increased artificial means of maintaining the body. In a world where something like 75% of society says it would like to die at home, 80% die in facilities.
What does this have to do with disability? We will all be disabled at some point. By age, by disease, by other health issues. But we all deserve the ability to make our medical choices. It is this ability - this right - that I advocate for.
What Not Dead Yet, Alex Schadenberg at Euthanasia Prevention Coalition and you miss in my writing is my support for Death with Dignity as legalized in Oregon and Washington (US). DwD involves only the terminally ill with 6 months to live, of sound mind, getting a prescription from their doctor that allows them to choose when and where they die. They are dying of their disease. They are not suicidal.
This is not at all different from a family member honoring one's advance directive to remove a respirator or forgo a feeding tube, nor from a patient's choice to end experimental treatments for cancer. It is a choice for as natural a death as we can have. It is a choice to not lie in a hospital, fully sedated for the remaining 6 weeks of life.
We, as members of developed countries where life-prolonging treatments can simply keep us "alive" for longer than God's planned, must now legally struggle with this new definition of death. And we must do so in a way that honors every patient's choice. Regardless of their race, economics, age, or medical condition.
This is my advocacy: To end futile, unwanted care which prolongs suffering; to educate patients' on what their rights are; and to work to help all of us plan for the end of life so that the decisions are in our hands.
In my work for patients' rights, I'm more of a fellow traveler than, unfortunately, you realize.
However, with legal assisted suicide combined with other circumstances in today's society, it also has more than the potential to become something like the T-4 Euthanasia Program. As Bad Cripple aka William Peace has said, disabled people, no matter of what kind, are devalued in today's society. In addition, the way the medical system works, one's immediate family(/spouse) has complete control over a person's medical decisions if the person is a minor or if they are so incapacited that they can't make those decisions for themselves. As a result, people in those two broad-category situations I just described are at risk of being murdered by whoever is making their legal decisions due to the absolute authority of these people in charge of their medical decisions combined with society's devaluation of disabled people. In the case of a disabled child, their parent or guardian can have them euthanized and they would be able to do so legally because they are in charge of all the child's medical decisions and it would also be socially acceptable due to the aforementioned devaluation of disabled people. It wouldn't matter if the child him/herself wants to live or not because they cannot legally consent to any medical decisions for themselves. It is also the same case with people who become disabled in such a way that they need extensive life-support systems to keep them alive or so that they can't speak. Because of this, their families would be able to legally have them euthanized regardless of what the person in question may desire. It is already done to some degree sometimes when a person's family has a DNR set up for them without their involvement. A DNR order is a direction to not resuscitate that person if they need it. Legalized assisted suicide would not just cover people that express a wish to die due to an incurable condition. It would cover all these cases as well because of complete control by family members over medical decisions combined with societal devaluation of disabled people. For that reason, I say that we should not legalize assisted suicide/euthanasia at this point in time.
Legalizing aid in dying - as was done in Washington and Oregon - in no way affects medical decisions made by parents for children. Nor does it allow family members to make decisions for terminal patients. You're making assumptions based on justified fears, but not on facts.
What is important is enforcing rights for all patients, regardless of who they are. And allowing individuals to make their own health care decisions. I believe in strengthening advance directive compliance (not weakening it as is being done by "pro-life" legislators in Idaho) and taking consent out of the hands of doctors. Society has lots of vulnerable groups that should be protected from discrimination. But, simply put, aid in dying does not pertain to those who aren't actively dying.
As a society, we are quite capable of establishing laws and policing them. And as has been found in those two states, the end of life process is more closely scrutinized.
I am not, from what you or William would perhaps call my physical position of privilege, advocating for killing anyone and aid in dying advocates don't think any less of life than you do. But they have sat at the bedside of a loved one, a mother or brother, who is actively dying, who is in pain, who has fought their disease with a strong will to live and has had to finally accept that they are dying - as indeed we all will. Instead of being kept unconscious in a hospital for the last weeks of their life, hooked up to machines, in pain - as our medical technology allows - they are ready to accept death.
That's what Death with Dignity is, accepting inevitable, unavoidable death.
I believe in DNR orders. As I said, CPR on a dying person is abuse. We have come to a place in our understanding of medicine that we think we can cheat death, avoid it inevitably. Resuscitate the heart, respirate the lungs. These can be done endlessly. But at some point it becomes abuse and prolonging death.
But again, this has nothing to do with the disabled because they are not actively terminal.
Discrimination exists in health care and it is directed at many vulnerable groups - all of which have justified fear of discrimination. But a patient, any patient, should have the right to be informed of their medical options and to make their decision according to their conscience. Not according to yours or mine or the president's or the senators'.
This is a right worth fighting for, not against.
I know what it's like to have my decisions about my health impeded by the government, society, and other groups.
Do your health decisions involve murder?
Well. At least you're consistent.
You toss this murder word around too casually. Who is murdering whom in your summary of aid in dying?
I apologize that my writing is not up to par right now--pain. Delving in feels as entangled for me as a plate of spaghetti and I can't be linear/detailed as I want.
I do agree that our lives are not valued by most--becoming visibly disabled was a culture shock to me; those who don't see us as less find that perspective difficult to imagine. The suggested health care rationing of people like Peter Singer does have many of us worried.
There is a woman in Oregon who had cancer--insurance refused more chemo but said they would pay for her to commit assisted suicide. Dignitas in Switzerland also takes people who are disabled but not terminal (quadriplegia) or not yet even close to terminal (multiple sclerosis, ALS). The practice is not matching the theory; while I know people are idealistic about the right of people to decide when they die (and I admit to some mixed emotions about it), I am worried that expensive people like me are going to be encouraged to off ourselves so as not to be a burden and crucial services withdrawn.
Two questions I have:
At what point is someone considered terminal? My friend with muscular dystrophy has been on a ventilator for 7 years and is a productive person. If a person is denied a technology or life saving drug, they could be considered terminal. While I understand that most assisted suicide proponents aren't suggesting this (Peter Singer excepted), a clear definition of terms by the assisted suicide movement (physicians, lawmakers especially) is crucial to prevent abuse, though it may still occur. Otherwise insurance companies and doctors could permit many people who are not terminal.
Another question I have is about the dichotomy between interventions and assisted suicide: does there have to be one? In other words, palliative care rather than extraordinary measures that aren't going to work (though insurance increasingly denies coverage in either case). It would be nice if we moved toward a home death movement similar to the home birth movement--less technology, more being with family, supported by hospice. My grandfather died this way and I think it's superior to life being extended on machines. I am not afraid of death after being there, seeing his desires and what happens as the body shuts down, talking to the care workers about what was typical.
There is a journal article I came across recently about nonterminal patients choosing to end medical care as a form of suicide (that could be treated).
When I say mixed feelings, I mean that I do believe people should be able to self-determine as they would if they were not ill, but I think people also have a lot of fear of dying and of dying naturally. I can't support the new laws until there are greater clarifications and more protections in place--for example, if there were attempts to treat for depression, end of life counseling, etc. (Or more major interventions if someone were not truly terminal but needed say, a wheelchair (me, drowning, not waving), or autonomy or caregiving or visitors.)
"But again, this has nothing to do with the disabled because they are not actively terminal."
I am appreciating this discussion. Re: the words above by Ms. Neumann...I would like you to understand that there are quite a few people out there who do perceive disabled people as being "actively terminal" by virtue of their disability. Just sayin'.
I agree with Claire on two counts: great discussion and yes, many do see the disabled as terminal but this is a horrible discrimination that we must all work to combat.
Hi FridaWrites: I think your comment IS well organized! I'm only speaking to US laws regarding aid in dying. There are strong regulations of DwD in Oregon and Washington that include confirmation of the terminal diagnosis (by two doctors) and screening of the patient for mental illness and depression.
Even Compassion & Choices has robust resources for suicidal and/or depressed patients. Their position is that aid in dying is only for those who have exhausted treatment options, are actively dying, and are mentally competent. Then the patient must (or may choose not to) self-administer the medication. The law really exists to prevent doctors from being prosecuted.
Refusing treatment that will have no meaningful outcome is not suicidal; in fact it is life-affirming to choose not to suffer.
I agree that a home-death movement is necessary but only possible via education of society about the current dying process. CPR and 911 calls continue for those actively dying even when resuscitation is painful and will not prolong life.
Time for me to jump into this vibrant discussion head first.
Ann, I appreciate your willingness to engage in open minded debate. I suspect we share similar views and both have a passion for what we believe. I know all too well the meaning and significance of death. I grew up on neurological wards with morbidly ill children many of whom died. More recently my father died and witnessing his slow deterioration was the hardest thing I ever endured. So, yes, some people live too long and have a poor quality of life. And yes some people suffer at the end of their life. Yet this does not mean we should legalize assisted suicide. What needs to be done is change our ideology in terms of death. Foremost among this ideological change would be an acceptance of the hospice care.
In terms of disability, the fact is many equate disability with death and some prefer death to life with a disability. As Claire pointed out many do not separate the disabled from the terminally ill. You agree this is "horrible discrimination". Great but that does not help people with a disability that may be encouraged if not pushed to end their life. I have no doubt I could find an MD today that would declare me terminally ill. I would go further and state that many people with a disability that are not terminally ill could do the same thing. Hence any contention that there is a clear dichotomy between the terminally ill and disabled is erroneous.
As for the laws that supposedly enforce my rights as an American citizen, they are routinely ignored and broken. You may have faith in the legal system but I do not.
Ugh must end now as the internet/TV repairman is here. To be continued.
Back on line and to Continue:
The entire idea of terminally ill and 6 months to live is misleading and subjective. Is a man with ALS in need of a respirator terminal? With a respirator, no. This person could live many years. So should this person be given the alternative of assisted suicide or the resources to live. The idea of a so called natural death is illusive and matter of luck or happenstance. Combine this with what has taken place in Europe, i.e. Dignitas and all sorts of alarm bells go off in my mind.
WP wrote: "I have no doubt I could find an MD today that would declare me terminally ill. I would go further and state that many people with a disability that are not terminally ill could do the same thing. Hence any contention that there is a clear dichotomy between the terminally ill and disabled is erroneous."
Anecdotal experiences are understandably persuassive but when they are over-generalized, they turn into straw man arguments. Look at your own. You proceed from "I could find AN MD today who..." to "hence ANY contention" with nary a shred of evidence to support your claim. With due respect, I would bet you a tidy sum that you could't find 3 MD's in 1000 to certify that (A) your paraplegia itself constitutes a terminal disease, or; (B) you have 6 months or less to live -- unless of course you actually have a previously undiagnosed terminal disease.
I think it is unfortunate to believe that a productive way to advocate for disability rights is to deny the rights of an even more socially vulnerable group: the actively dying. This, to me, is ironic paternalism.
There are strong arguments against assisted dying but continuing to push an indiscriminate and ill-defined analogue between disability and terminality isn't one of them, in my opinion.
Assisted dying should be a last-resort mechanism, avaialable only after all other palliative interventions have (repeatedly) failed. If you don't think so, I would challenge you to sit bedside with the family of a patient dying of end-stage AIDS with refractory diarrhea -- intermittantly screaming and sobbing in pain for hours and hours at a time, with maximum levels of sedation providing only brief and fitfull respites to his agony.
Anecdotal? Yes. Enough evidence to argue that assisted dying should become the law of the land? No. But compelling enough to not dismiss the notion out of hand as a eugenics trojan horse? I think so.
I represent the strange breed of a disabled person who supports legalized assisted dying. Before anybody gets to excited, you should probably hear my reasoning.
People with disabilities are justifiably and legitimately concerned about the implications of right to die legislation. We are going to be pressured into taking this option, insurance companies will deny treatment creating circumstances where death seems desirable, our families will attempt to influence us, non-disabled parents will make death choices for their disabled children, and our very existence will be threatened. As disabled people, we know this reality to be a true reflection of our devalued status within society. With many people considering disability to be a fate worse than death, there is no societally held distinction between terminal illness and disability status. Furthermore, given that getting simple accommodations for our disabilities is a constant battle, there is much evidence that points to us being in this struggle for a long time to come.
If I place all these social implications of this public policy on one side of a scale, you would think nothing could balance let alone tilt the scales toward legalizing assisted dying. For me, our right to self-determination trumps all the potential negative consequences of such legislation. No person let alone government has a right to tell me what to think, feel, or want. I alone should decide if I live. I alone should decide if I die.
To make assisted dying legislation more palatable people often point to safe-guards that will supposedly prevent abuses. Unfortunately, most people with disabilities know such measures will not stop what we fear. Assisted dying legislation opens up a can of worms that is terrifying no matter how carefully crafted.
And I still cannot find a way in my head or heart to deny somebody the right to decide about their own life. In point of fact, I wish I could.
Supporters of assisted dying need to stop telling disabled people our fears are unfounded. You will not ever win that argument. Mentioning safe-guards will not bolster your position. Declaring terminal illness utterly separate from disability will not help your cause. Acknowledging the validity of our fears and directly addressing ways to counteract them on a societal level would be an excellent step in a better direction. How are you, a supporter of assisted dying, addressing the devaluation of disabled people?
While I support the right of each person to decide about their own death, I am sickened at the thought of what actual legalization means to my community. This is why I take no active steps to fight for assisted dying laws. My energy is better spent trying to change how people view disability. When my value as a person is obvious to everyone, the implications of assisted dying legislation will terrify me less.
Jen: What an eloquent and profound post. All points well-taken. I will reflect in particular on your statement:
"Acknowledging the validity of our fears and directly addressing ways to counteract them on a societal level would be an excellent step in a better direction. How are you, a supporter of assisted dying, addressing the devaluation of disabled people?"
Thank you for sharing & enlightening.
Yes, Jen. Like Okakura, I think your point is profound. I wonder if this helps: I think of our objective as patients' rights: the autonomy of all patients to make informed decisions according to their conscience. I would like to see women's rights, elders' rights, disability rights, gay rights (and even marijuana rights) to be better considered under the rubric of patients' rights.
For two reasons: We're up against a juggernaut of discrimination in society, among the medical industry, among legislators; and because only with a coalition of those who work for patients' rights do we have a chance of better educating/motivating the public. Our voice is bigger.
As with every rights movement, protecting laws only came when one branch of the government (legislative or judicial or presidential) received enough pressure from society to make changes.
And from these posts I've learned that I do not effectively articulate my support for disability rights when advocating for patients' rights. Thank you all.
Jen, What can I say except wow--great contribution and thought provoking. May I point out however that we are fragile creatures and do not need laws that enable us to end our lives. We can choose to that any time and many do this every year.
Okakura, I am referring to finding an MD that is a zealot. I am sure they exist, paging Dr. Kevorkian! Would I want such an MD to treat me. Not a chance. My point was that extreme solutions exist--for instance 23 yr old Daniel James in the UK whose loving parents brought their recently paralyzed son to die at Dignitas.
Ann, Great phrase--juggernaut of discrimination. Anyone that is opposed to rampant discrimination as a great fight on their hands. I am delighted this exchange has sharpened your thinking on disability rights.
Thanks for the compliments.
Peace Man: Yes, we are fragile creatures. I would hate to see somebody with either lack of access to means or functional limitations have to refuse food and water in order to cause their own death. However, without a law preventing prosecution, anybody who administers medication leading to a "easier" death may have a problem on their hands. If help is needed for the individual to accomplish what they have decided, I think that help should be available.
Here is where disabled people like me get frustrated. Assisted dying advocates want us to have help to die, but often we are denied help to live. The fight should be for people to have the help they need to do what they choose regardless of that choice. To do otherwise allows society to decide about an individual rather than the person have true autonomy.
Anne: I, too, like the phrase "juggernaut of discrimination." I'm psyched you have a better understanding of how disability issues fit into the debate about assisted dying. I'm going to offer you my unsolicited opinion possibly worth less than even the paper upon which it is written. Hopefully I will not offend although I'm quite familiar with the taste of my own foot. *smile*
Though I can't point to anything specific, I have a sense that this understanding is mostly intellectual and has not yet penetrated to a visceral level whereas you do, for example, have an instinctive knowledge of how women's issues enter the debate. I'd encourage you to seek out that degree of awareness through whatever means works for you – reading memoirs by people with disabilities, talking to disabled people, critically considering your own internalized beliefs about disability... Otherwise you risk sounding like you are saying what you believe is necessary to gain our support without quite getting it.
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