Friday, February 19, 2010

Jill Stanek and Not Dead Yet Shake Their Fingers At Me, I Respond.

I don't take the same glory from having my "opponents" shout me down that Jill Stanek does - don't we have too many social issues to solve to fan distracting flames? - but I am intrigued to find that two prominent "pro-life" voices have recently maligned me for as benign and obvious a point as:

Culture wars focus public attention on one prominent, contentious, emotional issue (like assisted suicide or abortion) to the detriment of other very important health issues like women's health care and elder care. This is the gist of an article I wrote at AlterNet this week. You can read it here.

Yesterday, Stanek herself took the time to blog her poke at me:

Pro-abort Ann Neumann at Alternet is tying the fight to legalize euthanasia and assisted suicide in the UK to the fight to advance abortion rights in the US. Of course. The common denominator: Death, death, death.

My God is My Credential.

The common denominator is, of course, not "death, death, death" but the highly publicized efforts of folks like Stanek to focus not only on diminishing and discrediting women's rights but also those of elders. Pro-life groups have for the past few years worked hard to raise "euthanasia" on their platform. Terri Schiavo's brother, Bobby Schindler, spoke at the "pro-life" march a few weeks ago. "Right to life" groups are supporting elder rights-infringing legislation all over the country. The Catholic Church and Fundamentalists jointly have gone after women's and elder's health care autonomy. Stanek's own site regularly attacks end of life care choice. That the "pro-life" movement is working to determine the rights of the vulnerable and dying as their own domain is no secret, certainly not one that I'm exposing.

That anyone who believes in women's rights or elders' rights is pro-death is ludicrous, a line of irrational thinking that requires precisely the closed arguments that I say culture wars require. But that doesn't stop "pro-life" groups from trying to paint as pure evil those who don't abide by their fundamentalist attempts to impose denominational health care on the rest of the country. They've framed the debate for so long that they've begun to sound silly if you step back and look with any shred of critical thought at the issues.

That a woman loses her rights (to the state, or to the fetus, or, well, to Jill Stanek) when she becomes pregnant is religious idealization of a potentiality - a future human being. It is the same kind of religious ideology that is behind the "personhood" bills across the country that work to further limit women's access to medically-sound, legal health care. And the same imposition that allows these groups to damage the rights of patients at the end of their life. You know, "cradle to grave," "whole cloth," "sanctity of life" stuff that gives the self-righteous license to meddle in your health care decisions.

I am far from pure evil; I just happen to think that women and elders, not Jill Stanek, should make their own health care decisions. But Stanek's easy to write off as absurd and fanatical. Women's rights advocates and rational Americans have been doing it for years. But luck with those "credentials" Jill.

Don't Go Near Disability Rights.

The comment from yesterday that caught my interest the most came from the "anti-euthanasia" disability group with the catchiest name ever, Not Dead Yet. They write at their site:

Anyway, if you're here and you're reading this - it's obvious who she left out. Disability advocates and activists - in the US and the UK - oppose legalization of euthanasia and assisted suicide. The "practical" issues she and Beresford refer to are exactly the economic, social and support factors that disability advocates constantly bring up as being central to any discussion of assisted suicide and euthanasia.

And Neumann already knows this - or she should. She found her way to Bill Peace's
Bad Cripple blog last month, but shied away from engaging from the critique of her initial attacks on what she termed "slippery slope" arguments on the blog. Not long after that, she announced the news of the Disability and Health Journal Issue on Assisted Suicide on her own blog.

So she knows that disability activists and advocates are out there, talking about the "practical" things. The trouble is, we think legalization of assisted suicide and euthanasia is bad policy.

In other words, she's fostering and promoting the very polarization that she bemoans. Maybe it's because she really isn't sorry that assisted suicide is seen as a "culture wars" issue after all.

Minus the dismissive, snarky tone, NDY is right. I have been aware of their "anti-euthanasia" efforts for some time. And they are absolutely right that I have avoided them, to some extent. But I'll get to the reasons in a minute. As to the "polarization" I am fostering, I suspect they mean my disclusion of disability rights groups from the patients' rights alliance (that doesn't really exist but that I fantasize about often).

Nothing can be farther from the truth. But I hope to have a new article out in a few days that dispel that accusation. I just don't think that NDY represents and speaks for all disabled persons and I know that not all disabled persons are anti-aid in dying (or anti-patients' rights or anti-women's rights). And as to my joy in any assisted suicide culture war? I'll let my readers discern how engaged I am with hospice and palliative care, health care reform, and elders' rights.

As to the provision of rights to one group infringing on the rights of another, that's just bad thinking too. 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.

NDY continues:

She's wrong about that DMZ - we live in it. And neither the pro-euthanasia activists nor the highly political "pro-life" organizations want to acknowledge our place in the debate, because we'd distract from their Culture War. Neither side really sees people with disabilities as having a place in their respective cultures, so it's easy to marginalize us - and both sides do it with abandon and ease.

In some ways, this paragraph is also true. We don't have a patients' bill of rights in the U.S. because the various, disparate groups concerned have failed to build a coalition that is strong enough to rival that of the Religious Right. I have written that were women's rights, elders' rights, gay rights, medical marijuana rights, and disability rights activists to get together, they could resoundingly oppose denominational health care delivery in this country, the religious laws that are daily pushed in our state and federal legislatures, the biased court decisions that limit time and again a patients' rights.

However, Not Dead Yet isn't working for patients' rights, though the try to claim that mantle. They're working to prevent others from making their own health care decisions at the end of life. Yet they try to present themselves as free of political motivations. Incredibly disingenuous.

Founded in the 90's after Jack Kevorkian was acquitted, the group has worked to support the Schindler family in their fight to keep Terri Schiavo on artificial nutrition and hydration and to oppose aid in dying legislation everywhere.

Their argument can be summed up thusly: assisted suicide (or "euthanasia"), when legalized, forces already-marginalized people with disabilities to be coerced into ending their lives prematurely. By matter of their inherent vulnerability, the disabled are the first in society to be offered up by the state, the medical profession or society as not worthy of full protection. Making aid in dying legal devalues the disabled in society and jeopardizes their rights.

While also an argument dispelled with fact and statistics, it is never an easy position for a liberal rights proponent like myself to go against "the disabled." And to be perfectly clear, my position on patients's rights in no way infringes on the rights of the disabled. In any way.

Because of the way Not Dead Yet and other "disability rights" groups have positioned themselves, if you disagree with them by, say, supporting legalized aid in dying (as legislated as Death with Dignity in Oregon and Washing, like I do), you're out to kill the disabled. It's the same "with us or against us" stuff that pushes politicians into bad legislation and media commenters into squirming discomfort. Come out against a position taken by a disability rights group? No way, no thank you. To explain one's position against an "anti-euthanasia" disability group takes more than a glib sound-bite. And who has time for nuance in politics these days?

Rhetorically, Not Dead Yet and other such "anti-euthanasia" groups have sprung their argument like a trap. Because they are the most vulnerable, they've taken up the mantle for speaking for us all. And because all of us will be disabled at some point in life, either from frailty in old age or other health situations that impair what we consider our current "normal" functionality, we can anticipate oncoming disability. But we can't know what it's going to be like. I accept and acknowledge that as much as I do the fact that as a white woman I don't know what racial discrimination feels like. But that can't stop me from working to abolish racism.

I too accept that disabled persons have fear of the medical profession and of society's disdain for their physical and mental challenges. And I resoundingly admit that these fears have historical and contemporary relevancy. But I refuse to accept that my advocacy for patients' rights and end of life choice in any way diminishes the rights of the disabled.

So yes. Not Dead Yet is right that I don't often pursue disability rights issues. I write about end of life care and religion. But as I continue to press for a patients' rights coalition that will push back draconian and discriminatory care, I will have to better articulate disability rights activists into this alliance. I just don't think of Not Dead Yet as a disability rights group interested in patients' rights.

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