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 His work is predicated on legislating his idea (of life) and death that is no longer valid and has been rapidly changing for the past 40 years.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.