Wednesday, March 17, 2010

Working for Disability Rights and End of Life Rights.

Oh, I'm under fire again. This time mostly from Canadians, likely because the euthanasia bill C-384 is back in debate this week. Opponents are lashing out, even across the border. And at me for what I would consider an incredibly benign post that is all history of disability rights in Canada. Geesh.

I don't know the Canadian bill intimately, admittedly, though I have had interaction with Alex Schadenberg of the Canadian Euthanasia Prevention Coalition. I think he seems like an alright guy with a poorly-defined mission. His work is predicated on legislating his idea (of life) and death that is no longer valid and has been rapidly changing for the past 40 years. I admit that medical advancement has muddied that definition, he does not. "Go get-em" he says to Stephen at Not Dead Yet. I'm -em.

Not Dead Yet caught up with my Vancouver Sun link and dug around til they found the last time they (and "pro-lifer" Jill Stanek) wagged their fingers at me. Stephen posits that supporting Death with Dignity (the aid in dying bills in Oregon and Washington, as I do) means that I'm out to kill the disabled because, um, allowing terminally ill patients, who I admit can be classified as disabled because of their illnesses, to decide when and where to end their lives means that I have some deep-seated intent to start killing anyone that looks at me askance.

I don't mean to be flip about this, nor evasive. I've been accused of not addressing disability rights in my advocacy for end of life rights. I haven't because, while I understand the justified fear that the disabled have of state laws, and of society's and the medical profession's discrimination, I find the definition of "terminal" to not include someone in a wheelchair.

When you're accustomed to systemic discrimination, seeing your fellow-travelers is sometimes difficult. I'm advocating for patients' rights - and that means the right of every one of us, regardless of our color, class, gender, education, or functionality, to make our own medical decisions. The legalization of Death with Dignity in Washington and Oregon doesn't in any way cheapen or make vulnerable the lives of any member of society.

Yet this is the case that many make, out of fear, out of mis-directed self-defense, or out of lack of information regarding the end of life experience and the DwD laws. And this was the case that Bad Cripple made at his site yesterday, oddly lumping me with every person who's ever offended or misunderstood him:

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.

Comparing murder to depriving the disabled of school buses is over-reaction. Again, I agree that our society should work much harder to accommodate the disabled, to wipe away prejudices. Anything less than equality for the disabled is discrimination, plain and simple. But claiming that every supporter of Death with Dignity is out to end the lives of every disabled person is over-the-top.

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.

I didn't make those comments, nor would I. I believe that a disabled person has the same rights to be informed of their medical status and options as anyone else. But fear of a law that applies to terminal patients and working to oppose the rights of the dying does not protect the disabled from prejudice. BadCripple's existence should never be open to question! His life is never valueless. Hideous discrimination does exist. This we must work to end.

Sacrificing the rights of some for the fears of others never works. Or every black man with a bandana on his head and his hand in his pocked would be jailed away from every prejudiced little old lady who thought he was out for her purse. In other words, fear is powerful and often justified but it cannot be used to sanction the innocent acts of others.

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.

Asserting one's rights is not what I was calling paranoid; working to end the rights of others in order to assert oneself is reactionary. I may not be in a wheelchair but I will always support civil rights, equality and autonomy for those who are. I may not understand the kind of discrimination the disabled receive but I do know what it's like to have others legislate me out of my own health care decisions.

And here's the reply I posted at Bad Cripple, below. It's sparked a lot of productive conversation. You can read the other comments here.

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.

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Blogger Okakura said...

Read your posts in "Bad Cripple" and agreed wholeheartedly with your remarks. For what its worth, none of my friends with disabilities share the slippery slope/eugenics agenda fears that groups like NDY espouse. It's just frustrating because the diabled do have several legitimate (and long-standing) grievances that should be taken seriously by society but these are obscured by all the 'slippery slope' conspiracy innuendo.

March 19, 2010 at 5:37 PM  
Blogger Ann Neumann said...

Hi Okakura,

I've been reading and appreciating your comments. It's nice to hear a reasonable voice! William Peace at Bad Cripple and I have started a friendship over this last rally of Ann-bashing: a fair price, I admit.

Not disabled, I am rather vulnerable when approaching the disabled community with a patients' rights rubric that includes the rights of the elderly to remove themselves from aggressive but ineffective treatment (including defibrillators, respirators and artificial nutrition and hydration) and aid in dying as regulated in Oregon and Washington.

The fears that the disabled have of devaluation and discrimination are real. I recognize this. But I also think that they are exacerbated by those who are afraid of death (most of us) and by misunderstanding of the dying process. And then there are always emotional and dramatic national cases - easily misunderstood and misconstrued by the media - like the Terri Schiavo case. Yet in 2005, five years ago on March 31, when Terri Schiavo died, two national polls showed that the public disapproved of the Bush administration's intervention in the decision.

Cicely Saunders, the modern founder of hospice, wrote and talked a lot about total pain: the concept that the actively dying had both physical and emotional pain that prevented them from dying well. I think we should work to better understand what a good death means in our hyper-medicalized age.

And just to make a point that I see unclearly used in other posts: terminal is a medical diagnosis. It may not determine the length of life left with absolute accuracy but the diagnosis, barring miracles, is scientific.

It's great to hear from you. Thanks for coming by! Ann

March 20, 2010 at 5:30 AM  
Blogger Okakura said...

Ann: Ditto on the appreciation of your posts and gracious presentation. So happy to have discovered your blog in the process and will continue to read (and post) in the future.

I have some much respect and agreement with proponents of the social disability model but remain frustrated by the slippery-slope hijacking of the public debate over assisted dying --esecially so because I think it puts the more radical (and often, loudest)disability rights advocates in the ironic position of actually arguing AGAINST another's autonomy rights. I found it especially disheartening and irrational that such activists would construe Terri Schiavo's situation - an individual whose cerebral cortex was largely eviscerated - as a case of disability bias. Schiavo's was, to use one neurologist's term - "amented." No consciousness whatsover and no way to regrow the parts of the brain responsible for sentience. Not Alzheimer's, not profound retardation: both evidence consciousness. PVS is physiologic blank slate. A total irretrievable loss of consciousness resembles death... not disability. The only interests at stake in the Schiavo case were those of her family, and the legal sytem unanimously and repeatedly ruled that it was the husband who was in the best position to know Terri's likely wishes. And these same activists appeared willingfully ignorant of the struggles that both husband and parents went through for nearly 3 years before finally accepted the fact that Terri was gone (though the parent's were later and cruelly tricked into thinking there was hope for recovery by a few quacks who never examined her or the medical record).

Admittedly, PVS is something of an ethical 'black hole' in that such individuals are neither dead nor terminally ill, at least in the conventional sense. That they can potentially be kept physiologically alive by a Peg tube and comprehensive 24/7 nursing care makes their situation even worse in the opinion of most -a medically maintained 'purgatory' with no way out and no hope for anything that the individual could experience as a benefit. Medically maintaining the shell of someone who is no longer a person may be meant compassionately but it comes off as a somewhat perverse form of body worship. Almost like a home version of cryogenic preservation. Not something most sane people would want for themselves and certainly not something that society must promote or else risk the slipppery slide into eugenics.

I consider suicide a tremendous tragedy and our communal responsibility to protect any individuals and families from such an irreversible loss. This includes anyone contemplating such an act: teens, adults, seniors, newly disabled...anyone. That said, I simply don't consider assited dying to constitute "suicide" in any meaningful sense of the word. To argue otherwise, i think, is to engage in the worst sort of vitalism and to commit oneself to the vicissitudes of the technological imperative at the end of life -- something I wouldn't wish on anyone.

March 20, 2010 at 3:00 PM  
Blogger Ann Neumann said...

Well said, Okakura. I'm delighted to have this exchange.

You and I agree on most things. Primarily, I think this is an issue because of how rapidly our definition of death has changed. And to overlay another changing definition: what do we mean by disability? These two intersect at a very emotionally charged place.

Thanks so much for your insightful comments and what I hope will be continued readership!

Very best, Ann

March 21, 2010 at 2:32 PM  

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