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 His work is predicated on legislating his idea (of life) and death that is no longer valid and has been rapidly changing for the past 40 years.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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Hiring Pledges and Faith-Based Initiatives in DC.

Worldwide Religious News reports on the new requirement at Catholic Charities in Washington DC that incoming employees sign a pledge that they will not "violate the principles or tenets" of the church. While Catholic leaders deny that this new requirement is a result of the DC ruling that Catholic Charities can't discriminate against same sex couples, the article notes:

Catholic Charities, one of the region's largest nonprofit organizations, has been trying to develop a way to continue its multimillion-dollar social service partnerships with the District while not recognizing the city's same-sex marriage law, which the D.C. Council approved in December. Employees were told this month that the agency was changing its health-care coverage to avoid offering benefits to its workers' same-sex partners.

And here's the rub of faith-based delivery of social services. How do (federally funded) organizations justly serve a pluralistic society when their employees are asked to pledge discrimination against those individuals the very organization is charged with serving? (As well, denying health care coverage to all employees to avoid inadvertently treating a queer couple who's slipped through the hiring process any bit of equality is absurd and hateful.)

But here is the very position that our governmental reliance on faith-based organizations has put Catholic Charities (and World Vision, see below) and every other doctrinal provider of health care or other social services in: how to serve a society that does not abide by your discriminatory world view? The Catholic Church's conservative leaders have decided to dig in their heels.

From the article:

Salmi said the new language "is more of an expectation than a condition. It's letting people know this is the culture." Asked if that meant employees could speak or act against the church without being fired, Salmi said: "We can't speculate on the hypothetical. It's handled on a case-by-case basis."

A former vice president of the organization's human resources department, however, said the new language appeared to be a change.

"Putting it in a letter and requiring a signature, that's a condition of employment. There's no way to dance around that," said Wayne Swann, who served 3 1/2 years on Catholic Charities' board of directors and an additional four years as its vice president.

On the basis of Supreme Court rulings, President George W. Bush issued executive orders allowing faith-based social service groups that receive public money to discriminate in their hiring practices. As a candidate, President Obama sided with those opposing such hiring limits and vowed to stop them. But since Obama took office, the issue has remained under study by the Justice Department.

Federal and D.C. laws explicitly give religious groups exemptions from bans on religiously based employment discrimination, but some church-state experts point to federal funding statutes -- including those for Head Start and the Workforce Investment Act -- that ban such preferences. The Establishment Clause of the Constitution prohibits discrimination in government-funded programs, they say.

"Taxpayers shouldn't have to pay for positions to which they can't apply, solely on the basis of their faith," said Dan Mach, director of the ACLU Program on Freedom of Religion and Belief.

There is no hard data on the percentage of faith-based social service groups that have religious hiring requirements in an effort to maintain their faith identity. World Vision, one of the largest Christian relief organizations in the world, requires U.S.-based employees to sign a statement saying they agree with the organization's tenets or the Apostles' Creed.

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The "Natural Law" Justification for Discrimination.

At the Catholic-right site Ignatius Insight, there's an interview today with J. Budziszewski, author of a new book titled The Line Through The Heart: Natural Law as Fact, Theory, and Sign of Contradiction and a professor of government and philosophy at University of Texas at Austin.

I post this because I'm often sloppy in my accusations of Catholic discrimination in health care, employment, and human rights. This interview - and perhaps this excerpt from it - shed light on the doctrine behind that discrimination, a doctrine that denies social change, scientific knowledge, and evolving ideas of human equality by preferencing learned prejudice and privilege.

Ignatius Insight: What are some basic ways in which understanding natural law can help Christians in addressing "hot button" moral issues such as "same-sex marriage" and abortion?

Budziszewski: Very few people know anything about natural law theory. Yet "in our bones" we all experience the reality of natural law, because it is rooted in our creational design, woven into the fabric of the human person. We can't help but notice certain obvious things about ourselves.

This gives Christians a certain advantage in conversation, if only we can learn to rely on it. Who doesn't see that life and innocence are good? Who doesn't know deep down that innocent life should never be deliberately destroyed? Who hasn't noticed that men and women need each other, that there is something missing in each sex which needs to be balanced by the other? Who isn't at least half-aware that marriage is the family-forming institution, the motor that turns the wheel of the generations, the only form of association that can give a child a fighting chance of being raised by a mom and a dad?

Don't start with what people don't know. Start with what they do know. Weave together reminders of the obvious.

Ignatius Insight: You write, in a chapter titled, "Constitution vs. Constitutionalism," that although we Americans aren't sufficiently on our guard about the Constitution's flaws, we don't sufficiently cherish what is good about it either. What are some of those good qualities, and how unique are they to the Constitution?

Budziszewski: In fifth grade, my teacher told the class that the Founders of our republic invented checks and balances. Thank God, that wasn't true. As I learned in later years, they were actually the beneficiaries of more than twenty-three centuries of experience and reflection on the matter.

For revolutionaries, they were unusually conservative, and tried to squeeze lessons from every bit of learning at their disposal. They knew that no Constitutional republic can endure without a certain level of moral character, or without a certain respect for natural law, on the part of both statesmen and ordinary citizens.

On the other hand, they knew that there is never enough virtue or wisdom to go around, so they took additional precautions as well. Besides providing for checks and balances, they established courts; they refused to concentrate all powers in the same set of hands; they allowed the population to select their own representatives; and they tried to make sure that no single faction would ever be able to dominate the government.

Ignatius Insight: Modern liberalism claims to be all about toleration, equality, and freedom. Yet it seems to be increasingly intolerant, unfair, and controlling. What are some of the essential flaws with modern liberalism that lead to such a paradox?

Budziszewski: Virtue requires the exercise of judgment. The virtue of courage, for example, isn't just about suppressing fear, but about suppressing it at the right times and for the right reasons. If a fireman dashed into a burning house to save the pencil sharpener, we wouldn't call him courageous, but rash and witless.

In the same way, the virtue of toleration isn't just about putting up with bad things, but putting up with certain bad things in certain ways for the right reasons. We ought to tolerate disbelief in God, because faith, by its nature, cannot be coerced. But if someone thought we should tolerate rape and murder, we wouldn't call him tolerant, but foolish and wicked. Do you see the paradox?

In order to know which bad things to tolerate, we must judge well about goods and evils. Liberalism, unfortunately, denies this. It redefines tolerance as
suspension of judgment about goods and evils. Here enters a second paradox, because it is literally impossible to suspend all judgment about goods and evils. For example, there is no morally neutral way to define marriage. Laws that conceive it as monogamous put polygamy at a disadvantage; laws that conceive it as polygamous put monogamy at a disadvantage; and laws that attempt to be open to both monogamy and polygamy conceive it, in effect, as polygamous.

The way so-called liberal tolerance actually works is that it condemns the moral judgments of non-liberals, but enforces its own moral judgments by pretending that they are not judgments. This is really a disguised dictatorship.

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Blurring Fiction and Non-fiction in Medical Care.

Today WaPo's Ron Charles reviews Lionel Shriver's latest drag-you-through-the-truth novel, So Much For That.

The first part of the novel plays out while Terri Schiavo hovers on TV, with Republicans vowing to spare no expense to maintain her brain-dead body even as millions of conscious Americans are denied health coverage. Meanwhile, Glynis's treatment produces a double helix of hospital bills and insurance statements as bewildering as the cancer treatment itself. Shep is willing to spend whatever it takes to heal his wife -- every chapter begins with an updated statement from his dwindling Merrill Lynch account -- but what is the monetary value of a single life? What are another three months of pain worth?

And setting aside the novel's politics and economics, I've never read anything that made me so cringingly self-conscious about the way we respond to friends who are seriously ill. Granted, Glynis is a particularly unpleasant patient, angry and bitter about her feeble artistic career, but that only makes her more real. "Umbrage was her drug of choice," and she delivers a scathing diatribe on the culture of cheer that's built up around cancer treatment. She rages against "these nauseating speeches . . . the upchucking reminiscences . . . All this -- sentimentality!" Echoing Barbara Ehrenreich's similar complaints last year in "Bright-Sided," Shriver rips into the guilt-inducing support-group lingo: "hanging tough. Refusing to let go. Not giving up. Going the last mile. You'd think they were organizing a grammar-school sports day. . . . After all this military talk she now equates -- dying -- with dishonor. With failure. With personal failure."

Shep, meanwhile, notices "with an acrid taste in his mouth" that the initial pledges "to help in any way possible" are never followed by any actual assistance. "Their friends and family alike had poor emotional endurance," he realizes. "No parent had ever sat them down to explain that this is what you do and say when someone you at least claim to care about is deathly ill. It wasn't in the curriculum." If you've gone through this shocking evaporation of human contact, you know how true it is. When my daughter was born with severe brain damage 20 years ago, we were effectively ostracized by our community. My wife worried that we'd be overwhelmed by offers of assistance from fellow church members. None. Zip. One of our best friends told us later, "I sensed something was wrong, so I didn't call." But then as a friend of mine died last year across the street, I was too embarrassed to do anything besides send a brief note of encouragement. This is a novel that irradiates such sins of omission with shame.

As our chronic debate on health care reform drags on -- that hacking political cough that gets no better -- here is a novel that dramatizes what middle-class families are really suffering. "So Much for That" is a furious objection to watching the dream of health, financial security and old-age companionship wither and die. It's a bitter pill, indeed, but take it if you can.

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