Patients' Rights for the Disabled.

More support for my advocacy for a Patients' Bill of Rights: a new report via BBC that polls doctors and nurses and finds that the mentally disabled receive compromised treatment.

Mencap's research - conducted by ICM among more than 1,000 doctors and nurses within the past month - also revealed 45% of doctors and a third of nurses had witnessed a patient with a learning disability being neglected or being denied their dignity.

Four out of 10 doctors and a third of nurses surveyed thought that people with learning disabilities were discriminated against in the NHS.

Despite decades of effort, the US still does not have a Patients' Bill of Rights, largely because medical associations (like the AMA), "pro-life" (Catholic and evangelical) organizations and the state (federal and state legislative systems) have all been reticent to cede control of medical care (or suffering!) to the patient.

Watch women's rights, elders' rights, LGBT rights, disability rights and medical marijuana activists and you'll find a diverse but uniquely talented group of advocates that, if allied, could challenge the existing discrimination inherent in our current health care delivery system.

Strengthening the Advance Directive.

Thaddeus Pope at Medical Futility blog makes a great point about the president's recent move to strengthen advance directives. And to his post, I add my own point: at institutions where provider refusals (so-called conscience clauses) prevent patients from receiving treatment and information they desire, this effort will have no effect. Like at the 624 Catholic hospitals and hundreds of denomination health care facilities around the country. Pope's post in total:

On Thursday, President Obama directed DHHS to promulgate regulations that would "guarantee that all patients' advance directives, such as durable powers of attorney and health care proxies, are respected, and that patients' representatives otherwise have the right to make informed decisions regarding patients' care."

Now, hospitals already have statutory and common law duties to respect advance directives. Indeed, compliance is already required by the PSDA and regulations pursuant to the PSDA. If the new regulations are to add anything meaningful, perhaps they will mean that DHHS will (after two decades) actually enforce the PSDA.

That would be a great benefit. In contrast, the effect of DHHS regulations on LGBT individuals seems far more limited. Sure, the risk of federal enforcement may chill some hospitals that ignore advance directives appointing LGBT partners. But most LGBT patients do not have advance directives. And LGBT partners are rarely recognized as authorized decision makers under default surrogate statutes. Therefore, since DHHS merely enforces compliance with state decision making law, most LGBT obstacles will remain. The real problem is with state law.

C&C Reports on the Status of Aid in Dying in Montana.

You can read the article here.

An aside: I'm delighted to see Compassion and Choices announcing itself under the rubric of patients' rights. I've consistently advocated for various patients' rights groups - women's rights, elder rights, disability rights, medical marijuana rights, LGBT rights - to come together to reform our health care system and end discrimination against minorities. I hope other groups take note and follow in the stand for patients' rights from inequality and discrimination.

Nebraska Assaults Women's Intellect and Autonomy.

Two laws are being pushed in Nebraska - and are likely to pass - that further inhibit a woman's right to privacy and autonomy in decision-making about her health care. The first law assumes that women must be crazy, impressionable imbeciles if they decide to have an abortion (irregardless of her life circumstances, other than being female). Because we all know that women can't possibly make health care decisions on their own. That's what we have patriarchy for! The second assumes that 167 scientists and physicians who have reported that the fetal brain has no sense of pain until after 28 weeks are kooks. And it assumes that a woman who needs an abortion after that period of time is of course less important to society than a potential human being. There's nothing new to this assault on women's equality and privacy; just the same old assumption that women are stupid evil whores and murderers if they want to manage their reproductive health.

Of course none of this could be reported in the Washington Post's he-said-she-said article. As if facts don't matter and an over-simplified version of religious vs. secular America is worth denying women autonomy.

Nebraska could become the first state to require doctors to screen women for possible mental and physical problems before performing abortions under a bill that received final approval from the nonpartisan Legislature on Monday.

Republican Gov. Dave Heineman's office said Monday he will sign the bill Tuesday, along with another groundbreaking abortion measure lawmakers are expected to pass then. That bill would ban abortions after 20 weeks based on the assertion that fetuses feel pain.

Both bills are likely to be challenged in court. Abortion rights activists describe the measure passed Monday as a drastic shift in abortion policy that would block abortions by scaring doctors who might perform them. They say the second bill is aimed at blocking late-term abortions in one of the few states where there's a doctor willing to perform them.

New York State Gets Into the Provider Refusal Act.

From Thaddeus Pope at Medical Futility Blog: two NY bills would not only allow doctors or others to deny legal and prescribed treatments to patients, but to also refuse to refer them to a place where they can get those services:

I just noticed this language in N.Y. A.B. 2935 and S.B. 4898, bills aimed at several types of conscientious objection (from abortion, to contraception, to end-of-life):

WHEN PROVIDING A PERSON WITH ANY FORM OF ASSISTANCE OR INFORMATION RELATING TO LIFE-SUSTAINING MEDICAL TREATMENT IS CONTRARY TO THE CONSCIENCE OR RELIGIOUS BELIEFS OF ANY PERSON, HE OR SHEMAY REFUSE TO PROVIDE SUCH ASSISTANCE OR INFORMATION, OR REFUSE TO REFER A PERSON FOR SUCH ASSISTANCE OR INFORMATION, AND NO PUBLIC OR PRIVATE HUMAN SERVICES OR HEALTH CARE AGENCY, HOSPITAL, PERSON, FIRM, CORPORATION OR ASSOCIATION SHALL DISCRIMINATE AGAINST THE PERSON SO REFUSING TO ACT.

Who Speaks for the Catholic Church?

Hugh McNichol argues that all those organizations out there tacking "Catholic" onto their name are not the true moral voice of the Catholic church. The USCCB is. He notes the CHA and other organizations who endorsed the health care bill despite USCCB and other Catholic opposition. Yet, dissent in any church is not new. Who represents the millions of Catholics in the US, some say, is the millions of Catholics in the US - who are much more liberal on issues of gay marriage, women's rights, use of contraceptives, and yes, abortion.

An excerpt from McNichol's post is below. But what his article fails to note is this: What weight should Catholic theology, whatever theology the church decides on or we as a society choose to mark as "official," have in the laws that provide health care to a pluralistic society?

And does the over-sized participation of Catholic organizations (hospitals, long term and hospice facilities, HMOs) immediately determine that they have a right to discriminate against the multi-faith society they serve?

However, during the process of due diligence the Catholic Health Association endorsed the proposed legislation despite the reservations and the lack of approval of the United States Catholic Conference of Bishops. Additionally other groups of women religious, such as the Leadership Conference of Women Religious, endorsed the legislative package and clearly endorsed its ratification.

The question needs to be asked; are these organizations accurately reflective of the authentic teachings of the Catholic Church? For the most part the use of the term, “Catholic,” in the organizations title provides a somewhat tacit seal of approval which implies adherence to authentic Catholic teachings as proclaimed by the Magisterium of the Catholic Church.

However, such an application of the adjective, “Catholic,” does not always hold true to the organizations purposes and objectives. The Catholic Health Association for example is an organization that offers a loosely held confederation of health facilities that were formerly initiated and managed by religious communities. While the facilities operate under a general charter that embraces the “Spirit of Catholicism”, there is nothing in their charter that makes them answerable to the United States Catholic Conference of Bishops as it relates to their operating policies and procedures. In effect, the CHA is actually a trade organization that represents the interests of health care organizations that were formerly run by religious communities of priests or religious.

The president of Catholic Health Association was present for the public signing of the health care legislation into law at the White House this week. Sister Carol Keehan, DC. Sister Carol Keehan is a member of the religious group, Daughters of Charity. She has indeed lobbied for many years for the passage of a universal health care package that safeguarded all American citizens, especially the rights of the poor and challenged groups in American society. Sister Keehan for years has worked in the health care field and has even been recognized for her achievements by secular organizations and even Pope Benedict XVI in bestowing the papal honor, Pro Ecclesia et Pontifice (For Church and Pope) Award. However, despite her personal achievements, the implied approval of the entire legislative package, now federal law placed the Catholic Health Association in direct contradiction and de facto in opposition with the American Catholic Bishops.

Understandably no legislation is perfect and there are many imperfections in the Obama Health Care package. The fact remains there can only be one unified voice that represents the United States Catholic Church and that responsibility resides with the American Catholic Bishops. While the American Bishops have worked consistently towards the goal of a universal health plan for all Americans with concessions made for Catholic beliefs, their voice was in fact not loud or strong enough to curtail other groups such as the Catholic Health Association or The Leadership Conference of Women Religious from usurping the mantle that rightly belongs to the United States Catholic Conference of Bishops.

Britain's Pharmacists and the Conscience Clause.

From the BBC, Britain has decided to keep the same provider refusal laws that exist in the US. Pharmacists who morally object to contraception will be able to legally refuse those services. But discussion in Britain is now taking place that will require refusing pharmacists refer patients to other pharmacies or facilities where they can get the prescription their doctor has given them.

Here in the US, the same question looms over pharmacists. Obama rescinded the 11th hour conscience clause made law by Bush in his last month of the presidency. Obama has yet to take up the issue again, despite strong calls for it's inclusion in the health care bill. Here in the US, the argument continues to be framed as one of provider conscience; the rights of patients seldom make it into the discussion, unfortunately. I hope this conversation does take place in the US; patients' rights need to be considered, explained, and debated on a national scale.

From the article:

A revised code of conduct from the new industry regulator will allow staff to opt out of providing items such as the morning-after pill and contraception.

But they may in future have to give customers details of alternative shops.

The National Secular Society wanted the General Pharmaceutical Council to scrap the so-called conscience clause.

The General Pharmaceutical Council (GPhC) is to take over the regulation of pharmacists, pharmacy technicians and the registration of pharmacy premises from the Royal Pharmaceutical Society later this year.

Under its new code, pharmacists with strong religious principles will still be able to continue to refuse to sell or prescribe products if they feel that doing so would contradict their beliefs.

But the GPhC says pharmacists who refuse services could be obliged to tell patients where they can access them and it plans to consult more widely on the issue.

Terry Sanderson, president of the National Secular Society, said he was disappointed by the code.

"This was a perfect opportunity to severely restrict the exercise of this supposed conscience clause which has caused a great deal of embarrassment and inconvenience to people recently.

USCCB and Catholic Health Association Under Fire From Ultra-Conservative Catholics.

Yesterday, Deal Hudson wrote at the Catholic Advocate that the US Conference of Catholic Bishops has failed to effectively strategize it's opposition to the health care bill.

He also criticizes the USCCB for allowing the Catholic Health Association (CHA) to voice support for the bill. CHA represents the more than 600 Catholic hospitals, hundreds of long-term care and hospice facilities, and three of the top 10 HMOs (health management organizations) in the country. Hudson writes:

At present, the USCCB has not issued any statement directly opposing the Catholic Health Association or any of the Catholic groups supporting the Senate bill such as Catholics United and Catholics in Alliance for the Common Good.

The lack of such a statement allows the press, the White House, and the Congress to hold up these groups as providing official Catholic support to a public which largely does not know any better.

A direct rebuke from the USCCB towards the Catholic Health Association would not be in keeping with what I have termed its strategy of qualified support, but it would certainly keep wavering members of Congress from finding political cover from these groups willing to accept abortion funding.

With a vote on the bill coming as soon as Friday or Saturday, the USCCB is running out of time to get tough. The parish bulletin program emailed last Friday by the USCCB comes too late to have any serious impact on a vote this week.

The willingness of such an intimate partner with the USCCB to break with the bishops on the health care bill is just another aspect of its failure to negotiate powerfully with Congress and speak loudly and clearly to the media on this legislation. Its strategy of qualified support has put the USCCB in a weakened position and allowed the initiative to be taken over by groups with vested interests. CHA wants federal money for its hospitals, while Catholics United and Catholics in Alliance for the Common Good were created precisely to keep Democrats in power, even if it means further endangering the lives of the unborn.

It’s common sense that you can’t win a negotiation if you aren’t willing to walk away from the table. Thus far, the USCCB hasn’t shown that willingness. Bishop Thomas Wenski of Orlando understood this when he wrote a few days ago, “No health-care legislation is better than bad health-care legislation.”

Despite recent and vocal debunking of the accusation that the current bill provides federal funding for abortion, Hudson and Catholic Advocate, along with other Catholic-right organizations, have worked hard to push the conservative USCCB even farther to the right on health care. That the composers of both the Stupak and Nelson amendments deserve criticism for not being right enough and that they are allowing CHA to misrepresent Catholic opinion on health care is a blatant falsehood.

An October poll shows that a full 56% of Catholics think the USCCB should not take a position on health care reform and a majority support both the public option and funding for abortion (again, even though the latter is not included in the existing bill.)

While I'll agree that public opinion is too often falsely touted as the best way to achieve individual rights (historically, meaningful minority rights legislation has required both strong executive or legislative leadership AND public support) Hudson is asking the church hierarchy to take a much more conservative stance than it's parishioners. As we've seen throughout the debate, they certainly have. But that's not enough for Deal Hudson - and he's not alone; he is so far right of Catholic opinion on this issue that he makes the USCCB look more liberal than they really are.

Why We Let Catholic Health Care Discriminate.

The Moderate Voice has a great discussion going about the benefits and detriments of Catholic health care in the US. If you read here often, you know that the Catholic Church controls the services provided at the 624 hospitals - and hundreds of long-term care, hospice care and other institutions - in the US.

The post is a little long and emotional, as well as full of disinformation. But the comments area is fascinating and gives a good look at the high emotions that surround this issue.

For decades the Catholic church has worked to perpetuate the belief that they are too big a part of health care to be forced to operate without discrimination. What would the country do if the church pulled out of hospital operation?? In fact, they have worked in this field for centuries as part of their mission to care for the poor and sick. While I believe that the purpose is sincere, nonetheless, they discriminate against patients by not providing the full spectrum of legal, medically sound services. And they refuse to provide proper informed consent or referrals. In essence, they use the reverence that society has given the moral goodness of the church to discriminate against women, gays, elders and the poor by deciding what "conscience" those patients should have.

Here's my comment on the site:

Fantastic discussion. A couple of corrections: Catholic hospitals get 50% of their funding from the government, just like every other non-profit hospital. Less than 3% of their income is from donation so they are clearly not providing Catholic health care with Catholic donations. And Catholic hospitals - all 624 of them - statistically do no more "charity" work than other non-profits. In fact, all hospitals are required by federal law to treat the uninsured.

The best analogy is a company town. The company provides the jobs, the housing, the schools, even owns the grocery story. They are "too big to fail" in that town. One can say, oh thank god for the company, without it we would have no jobs or schools or groceries. But the truth is that the company then dictates all aspects of the town's life. And if the company says women should not be able to plan how many children they have or that a terminal patient can't be removed from artificial nutrition and hydration when they wish, the company is exercising it's size and monopoly to the detriment of employees rights.

When a pluralistic society finds itself subject to the doctrine of a religious health care institution, patients' rights are violated. Those who suffer the most are the poor and minorities in society. But we are bashful about calling out this issue because we give reverence to the "good intentions" of the Catholic church and those of us with voices have the resources to go elsewhere.

Reproductive services clinics have risen over the past 38 years to provide what Catholic and other denominational hospitals have not. They serve the poor and provide services unobtainable elsewhere.

I do believe that denominational healthcare is a discriminatory practice in the US but I also accept that the dictates of the Catholic hierarchy are not necessarily what's practiced in Catholic hospitals. Yet, that dissent cannot erase the fact that Catholic Ethical and Religious Directives discriminate against the poor, women, elders, gays and others by not informing patients' of all legal and medically-sound treatments and providing meaningful referrals. If we continue to privilege provider (and institutional) conscience over patients' conscience, we perpetuate this discrimination. Denying this is dishonest and a disservice to equality and individual conscience in this country - as well as a violation of equal rights.

Locking Women Away.

At DailyKos, a review of my friend Lynne Haney's new book:

Offending Women: Power, Punishment, and the Regulation of Desire
By Lynne A. Haney
University of California Press: Berkeley
Softcover, 304 pages, $24.95
Feburary 2010

Money quote:

The policies of mass imprisonment, which systematically remove so many women from their communities, seem to signify a shift in how state regulation is conceptualized and practiced. While poor women have always had their lives regulated by the state indirectly, through social policies, laws, and encounters with caseworkers, more of them are living and raising children quite literally within the state--often for long stretches of time. Moreover, through parole, probation, and "community-based" corrections, the penal system remains in these women's lives for years after release. The state's methods of control also seem to rely more heavily on direct modes of intervention characteristic of total institutions. And these modes of intervention appear to be based on restrictive models of citizenship and forms of claims-making.

Author: A professor of sociology at New York University, author of Inventing the Needy: Gender and the Politics of Welfare in Hungary.

Basic premise: The author looks at two programs set up in California as "community-based prisons" for mothers to be housed with their children in alternative, less institutionalized settings. One program, Alliance, was researched in the early 1990s, when the focus of social programs was moving toward insistence on self-reliance instead of the "welfare state." With this cultural imperative in the background, the program focused on emphasizing job and life skills acquisition in a boot camp-like setting (punctuality, chores, classes were all emphasized). In the second program examined a decade later, Visions, the author notes the shifting of cultural priorities--instead of prepping individuals for the basics of taking responsibility for themselvespractically in society, now young mothers are coached in a brand of therapeutic self-governance, heavily reliant on 12-step methods and confessional mode. In both cases, society-wide injustices are swept under the rug; solutions are located in the individual alone, in the case of Alliance as a lack of job/life skills, in Visions as a pathologized internal child. The author examines the daily routines of both programs, their effects on the women and the growing hybrid of public/private institutions that make regulation and benchmarking difficult.

Readability/quality: Relatively free of jargon, engaging when exploring the daily routines of these young mothers in each setting, thoughtful about the implications for wider society, the book is a relatively smooth read from an assured expert who clearly has spent a career looking at the issues tackled.

Who should read it: Same as for Interrupted Life (in fact, one of the essays in the previous book is by this author, short and focused on only one aspect of one of these programs)--those interested in women and society, incarceration, alternative programs, children's issues.

Bonus quote:

It matters that the women in Visions confronted a discourse of desire as opposed to a discourse of need. First and foremost, it matters because of the institutional practices that accompanied this discourse; the women at Visions received counseling not education, group therapy not job training, and treatment for personal addiction not preparation for social integration. While not all women accepted these practices, few could disrupt them in a consistent or collective way. Unlike the young women at Alliance, who used the prevailing needs talk as they challenged it, the women at Visions turned on themselves and one another. Although some Visions inmates tried, few were able to move the emphasis from personal to societal failings. At Visions, the discourse of desire seemed like a channel through which claims to social justice and fairness were silenced; the women subjected to this discourse seemed one step closer to a state of disentitlement.

Both Alliance (skills-based) and Visions (therapeutics on steroids) sound like a nightmare. Alliance, presented first in the book, has an understandable rigidity given that these women were convicted of something (mostly drug crimes), but Haney points to the inherent contradiction in the program--even as counselors and staff are harping non-stop on self-reliance to these women, they are confiscating their AFDC aid and pooling it for survival. The women, once they get a few skills under their belts, recognize this and being reporting conditions to public agencies, spurring investigations. From a sociological point of view, Haney was in the right place at the right time to document the formation of blocs of resistance, but alas, they come to naught for various (predictable) reasons. As bad as Alliance comes across, Visions is much worse--the constant pressure to confess confess confess and to have more horror traumatic abuse stories than your fellow prisoners is appalling; women turn on each other viciously, using information gleaned in group self-help sessions, and the whole program comes across as a Jerry Springer-like emotional "Lord of the Flies."

Ironically, both programs were conceived with the best of intentions: to allow women to serve time with their children, in a softer setting than normal, in a place of emotional safety and practical learning. Both programs were supported by staunch women's advocates. And both ended up mired in truly appalling dynamics. The bottom-line problem with both is the diminishment of the role of connection and empowerment; problems are always and forever seen as individual crosses to bear and hurdles to overcome. Haney's book is also a warning about the blurred area of unaccountability created by these public/private entities.

Not the subject of the book, but one that would be a welcome follow-up by some author: the effect on the children of growing up in these programs.

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.

Religious Left Raises Voice on CBS "Pro-Life" Superbowl Ad.

Yes, there is a Religious Left. And it doesn't agree with Focus on the Family's plans to run a "pro-life" ad during the Superbowl, in violation of CBS's existing policy about acceptable ads.

Here's a statement from Women's Media Center:

The religious organizations listed below represent more than ten thousand religious leaders and tens of thousands of people of faithwho believe that abortion must be safe, legal, and accessible. We come together to ask CBS to pull a divisive anti-choice ad by Focus on the Family slated to be aired during the Super Bowl. We believe strongly that the Super Bowl is not the appropriate venue for pressing discussions about moral decisions.

We are concerned that this ad will imply that a specific religious doctrine speaks for all people of faith in America about abortion, not recognizing that many religious denominations have passed policies in support of legalized abortion. No single religious voice can speak for all faith traditions on abortion, nor should television networks like CBS take sides on religious differences. We believe women must have the right to apply or reject the principles of their own faith in making the decision as to whether or not abortion is appropriate in their specific circumstances.

Signed:
Rev. Steven C. Baines
Assistant Field Director for Religious Outreach
Americans United for Separation of Church and State

Rev. Dr. Ignanio Castuera
National Chaplain
Planned Parenthood Federation of America

Rev. Robert Chase
Founding Director
Intersections International

Rev. Steve Clapp
President
Christian Community, Inc.

Rev. Dr. J. Bennett Guess
Director of Communications
United Church of Christ

Rev. Debra W. Haffner
Executive Director
Religious Institute

Harry Knox
Director, Religion and Faith Program
Human Rights Campaign

Rev. Peter Laarman
Executive Director
Progressive Christians Uniting

Rev. Barry W. Lynn
Executive Director
Americans United for the Separation of Church and State

Rev. Jill K. McAllister
President, Clergy Advisory Board
Planned Parenthood Federation of America

Rabbi Dennis S. Ross
Director
Concerned Clergy for Choice

Rev. Carlton W. Veazey
President and CEO
Religious Coalition for Reproductive Choice

Bishop John L. Selders, Jr.
President
Interdenominational Conference of Liberation Congregations and Ministries

Rabbi Dennis S. Ross, Director
Concerned Clergy for Choice
The Education Fund of Family Planning Advocates of New York State

"Pro-Life" Shame and Intimidation Campaign and the Making of Public Opinion.

Bioedge.org does something like a "this day in history" post on the 2008 decision by American Public Health Association to support Death with Dignity (the name of the bills in Oregon and Washington). And in noting their belated surprise at an faux-controversy, they mention the APHAs recent endorsement of "safe and legal abortion."

Which perfectly gets at how effective "pro-life" efforts have been at convincing not only the public but the "controversy seeking" profession of bioethics that abortion and aid in dying are, well, shocking controversies.

This sort of look at patients' rights issues - OMG medical associations actually find women's and elder's rights to be legitimate?! - may make for a great story but it denies the fundamental scientific and medical acceptance of these two issues as have been misconstrued by the noisy "pro-life" organizations in the country.

The latest story out of Montana, where aid in dying was ruled legal by that state's Supreme Court on New Year's eve, is that doctors are not rushing in to offer aid in dying to their terminal patients. It's no wonder they aren't. Since Baxter v. Montana was brought to the courts in 2008, "pro-life" interests have been working hard to make aid in dying untouchable by doctors, shaming them and their patients with the very same tactics that have so successfully worked to shame women. Even the four Catholic-hospital-employed doctors who filed the case with Robert Baxter and Compassion and Choices had their work telephone numbers published by ultra-conservative LifeNews.

Harassment is nothing new to "pro-life" groups. In fact, it is the fundamental aspect of their successful campaign against health care services they ideologically oppose.

Shaming doctors and their patients for using legal, medically-sound procedures has worked wonderfully for "pro-life" activists. Look at how women's reproductive service - not just abortion but the full spectrum from tubal ligations to sterilization to contraception - have been relegated to clinics. Women know that if they want to make their own health care decisions, they have to be prepared to face long travels, picket lines, shaming from their pharmacist, denial of both informed consent and referrals, and mass discrimination. Even the staunchest abortion supporters squirm when you ask them if they've had an abortion or not. Hillary Clinton has said that the number of abortions need to be reduced.

Why is this a significant but destructive meme? Because public opinion and the legislature, both state and federal, have been systematically made to accept abortion and aid in dying as hot button, controversial topics. Opponents work hard to misconstrue information regarding both legal services, their safety, even their legality. And the rest of society has bought the shame.

For nearly 40 years this "pro-life" work has paid off in creating an area of sound medicine that is considered unhealthy and controversial - and hence is harder to access for patients most in need, particularly the poor. When bioethicists, those who are supposed to be most in tune with science and medicine, fall for the "pro-life" line, advocates for patients' rights know they have a long way to go before justice in health care delivery is a reality.

From bioedge.org:

A controversial 2008 decision by the American Public Health Association (APHA) to back "aid in dying" (ie, assisted suicide) slipped almost completely under the media’s radar at the time, even BioEdge’s. In retrospect, it seems like a highly significant decision.

Why? It means that the official policy of the "oldest, largest and most diverse organization of public health professionals in the world" – 30,000 of them – is to support assisted suicide to the hilt. Or, as they prefer to call it in Oregon, "patient-directed dying" or "physician aid-in-dying".

All the facts about the debate surrounding the decision have not emerged, but it may be significant that another policy adopted at the October APHA conference was strong support for safe and legal abortion. There must have been a lot of politicking going on behind the scenes.

Some of the major features of the APHA policy recommendations on assisted suicide are:

>>> [It] Supports allowing a mentally competent, terminally ill adult to obtain a prescription for medication that the person could self-administer to control the time, place, and manner of his or her impending death, where safeguards equivalent to those in the Oregon DDA are in place…

>>> [It] Rejects the use of inaccurate terms such as "suicide" and "assisted suicide" to refer to the choice of a mentally competent terminally ill patient to seek medications to bring about a peaceful and dignified death.

>>> [It] Supports measures to ensure that patients eligible to receive information about death with dignity and are able to choose alternatives such as aggressive pain and symptom management, palliative care, hospice care, and care to maximize quality of life and independence.

>>> [It] Supports the provision of information about the full range of end-of-life care options to terminally ill patients permitted by law in the state in which the patient is receiving care, including, for example, voluntarily stopping eating and drinking and palliative sedation…