Provider Refusal and Hospital Visitation Rights.

The Centers for Medicare and Medicaid Services today announced that all hospitals are required to issue policies for visitation rights that do not discriminate.

I wonder if the "conscience clause" as imposed by Bush W. in his last month in office will still allow providers to refuse visitation by those they are morally or religiously opposed to? Namely, same sex partners. Cohabitating partners?

The AMA's "Free-Market" Legacy.

Well here's a fascinating little tidbit from June 9 that I'm slow to come across, below. A new study shows that a majority of AMA members opposed the association's position on health care reform. Now, why would doctors support the expansion of Medicare to cover uninsured patients and not a professional association like the AMA? Why would the AMA prefer "private means" of expanding coverage to the uninsured? It's an easy question to answer when you look at the traditionally conservative, paternalistic nature of the organization and the field. I know that I'm over-generalizing here but the study proves my point that the AMA is grossly more "free-enterprise," and conservative than it's members. (Kind of recalls to mind the nature of the debate between the USCCB and it's unabiding "adherents," the CHA, women religious, and lay members.)

This report makes me pull out an article that the former chair of the AMA's Ethical and Judicial Affairs sent to me when I asked him about health care as a human right. It was published by the Cato Institute in 1998, and alleges that, "The right to health care is perhaps the most widely accepted of all welfare rights." Indulge me while I include the important following paragraph:

In the end, however, that argument is flawed in the same way as any other appeal to the notion of positive liberty. Obtaining treatment for illness or injury is obviously a human need, but hardly a more important need than obtaining food or shelter. As with all other goals, people need the freedom to weight it against other goals and to choose the means of obtaining it. But they cannot define their freedom in defiance of the facts, or at the expense of the freedom of others. Illness and injury are natural risks inherent in life, and all the means of dealing with them -- from aspirin, to open-heart surgery, to health maintenance organizations -- must be produced by human effort to which no one can have a right without the producers' consent.

The producers here, of course, are doctors and the medical industry. How dare sick people expect others to meet their care needs? Let them sink or swim in the free market where medicine should be a commodity and "natural risks inherent in life" should be carried for the sake of liberty.

The report:

Researchers at Mount Sinai School of Medicine have found that the majority of physicians and members of the American Medical Association (AMA) opposed the AMA's position on coverage expansions--the most contentious issue in the recent health care reform debate. The data are published in a letter in the June 9th issue of the New England Journal of Medicine.

In the 2009 health care reform debate, the AMA opposed Medicareexpansions and proposed coverage of the uninsured primarily through private means. The researchers found that only 12.5 percent of all physicians and 14.2 percent of AMA members who participated in the survey supported the AMA's position on insurance coverage expansions. Salomeh Keyhani, MD, MPH, Assistant Professor of Health Policy, and Alex Federman, MD, MPH, Assistant Professor, Medicine, Mount Sinai School of Medicine, co-authored the study.

"Our survey indicates that most physicians and AMA members oppose the AMA's views on coverage expansions," said Dr. Keyhani. "The AMA is a highly visible organization that is presumed by many to represent physicians' opinions on various issues. However, there appears to be a discrepancy between the AMA's platform, the beliefs of its members and the views of physicians nationwide."

Mount Sinai researchers used the AMA Physician Masterfile to survey 5,157 physicians. The researchers secured a 43.2 percent response rate. There were no significant differences in response based on specialty, practice type, or geography. Physicians that were most supportive of the AMA's position were doctors of osteopathy (16.5 percent), physicians whose income was based on billing (16.1 percent), and physicians in rural areas (16 percent). The lowest level of support came from female physicians, with only 7.9 percent supporting the AMA's platform. Physicians who back the AMA's position were more likely to be younger, male practice owners in nonmedical or nonsurgical specialties such as anesthesiology, pathology, or radiology, fields that typically involve less patient interaction.

Respondents to the survey were asked to indicate their support on key issues, including the public option, expansion of health insurance through private means, and support for a proposal that would allow adults 55- to 64-years-old to buy into Medicare. Physicians were considered to be in support of the AMA's position if they agreed with private expansions only and opposed the expansion of Medicare.

Provided by The Mount Sinai Hospital

Serving All Patients

Chuck Colbert at Windy City Media Group reports that a new study conducted by Human Rights Campaign shows that US hospitals have a way to go before they are providing equal access to LGBT patients. While there are some success stories of hospitals who benefit from non-discriminatory care, many have not made the effort to accommodate LGBT patients.

I often write about the web of provider refusal laws (so-called "conscience clauses") that permit denominational hospitals and health centers and their employees to discriminate against patients, including women, gays, the disabled, and the elderly -- including denial of informed consent and meaningful referrals. I hope that more attention paid to the plight of LGBT patients informs the public of the discriminatory nature of these clauses and a need for a national movement for patients' rights. From the story:

Earlier this year when President Barack Obama signed a memorandum, calling for and end to discrimination against gay men and lesbians in hospital visitation policies, he set in motion potential changes that will significantly alter how LGBT people interact with the healthcare system.

But a new report of the nation's LGBT health care practices, released this week, found that far too many of medical care facilities have some way to go in implementing policies that are fully inclusive of gay people.

Representatives of the Human Rights Campaign ( HRC ) detailed results of the survey and report, called the Healthcare Equality Index 2010 ( HEI ) , for reporters last week during a telephone press conference. The analysis is included in a 72-page document, accessible at www.hrc.org/hei2010/index1.html . Working with the Gay and Lesbian Medical Association, the HRC Foundation produced the fourth annual HEI survey report and its findings.

Conducted October through December 2009, the HEI 2010 reviewed a representative sample of 200 of the largest healthcare facilities nationwide. The report found that in all 50 states—and even in historically LGBT-friendly cities like San Francisco and New York—some facilities still do not fully protect LGBT people from healthcare discrimination. In fact, a whopping 93 percent of healthcare facilities included in the study do not have fully inclusive policies while 42 percent fail to include "sexual orientation" in their non-discrimination policies for patients' bill of rights.

Debating The Priority of Conscience.

A recent panel at Boston College included Fr. J. Bryan Hehir, secretary of health and social services for the Boston Archdiocese (and the Mongomery Professor of the Practice of Religion and Public Life at Harvard’s Kennedy School of Government), Michael F. Greene, a professor at Harvard Medical School and chief of obstetrics at Massachusetts General Hospital, and Melissa Rogers, a lawyer who directs the Center for Religion and Public Affairs at Wake Forest University. The panel is described in an article at Boston College Magazine.

The subject of discussion was conscience exemptions, or provider refusal laws, that allow doctors to deny accepted medical procedures to patients because of religious or moral objection, including information about such available services or meaningful referrals for them. While the subject of "conscience clauses" most often arises when discussing women's reproductive services (abortion, emergency contraception), they also concern other areas of treatment including STD, pregnancy and AIDS prevention services for gays and lesbians, fertility services for lesbians, and end of life choices for terminal patients. I've long been pushing for more awareness regarding how these laws are practiced at Catholic hospitals because they are the second largest provider of health care in the country.

Because the Catholic church is a strong opponent of gay rights, end of life choice and women's reproductive rights, they have hidden behind such religious exemptions as a manner of forwarding their religious health care mission -- often refusing to comply with informed consent or referral ethics, while working to maintain their pronounced role in health care while infringing on patients' rights. In defense of such conscience clauses, "pro-life" advocates often claim that the conscience of the doctor or care-giver is morally superior to that of the patient and should be protected. Yet the web of laws that protect individuals have crept, over the years, to include the consciences of institutions. In other words, as Diogenes writes at Catholic Conscience, the church is able to use the shield of provider refusal laws to impose discriminatory care that they see as immoral. If you can't overturn Roe v Wade, the reasoning goes, limiting access to abortion and other services is the next best strategy.

Below is an excerpt from the article:

In addition to providing an overview of religious exemptions, the panelists suggested ways to move toward a societal consensus—the “fair adjudication” hoped for by Hehir—while quieting the noisy, sometimes angry debates between those who believe the state must honor any claim of conscience made by a health care provider and those who think the state should automatically deny such claims. Hehir called for “civility, attention to evidence in the arguments, making the arguments on the basis of reason, not on innuendo and ad hominem.” He also said that providers should claim exemptions “only for essential issues, not capaciously.”

Greene echoed this point when he chided doctors who won’t even refer a patient for a procedure that they refuse, on religious grounds, to perform themselves. He compared these doctors’ reasoning with that underlying a mythical court case against a farmer whose corn was made into whiskey that, in turn, fueled the misdeeds of someone the farmer never met. “There has to be a limit,” Greene asserted, “to the reach and realm of conscience.” He also cited doctors’ ethical duty to avoid situations where moral conflict might arise. “If . . . you have an objection to providing emergency contraception or abortion care services,” he quipped, “you shouldn’t volunteer” at your local Planned Parenthood office.

Rogers, too, advocated “early disclosure” by physicians of their religious objections to any procedure that they might be called on to perform. “That should not be something [the patient discovers] down the road,” she said, “in a crisis, in a conflict.” In addition, she called for a balancing of the provider’s right of conscience with the patient’s right to treatment. “We need to respect the moral autonomy of both patients and health care providers,” she said. Of pharmacists who refuse to provide morning-after contraception, she said, “If there’s [another] pharmacy close by that can provide the service . . . that would be a mere inconvenience. But it’s something else where there’s an actual lack of access, and we need to differentiate between those” situations. In the political debate over religious exemptions, “we often see a complete unwillingness to recognize” the other side’s point of view, Rogers added, and thus she called for respectful dialogue, conducted outside the political arena, between people on all sides of the issue, with a goal of finding “common ground principles” that could then be presented as model legislation.

You Got Your Religion in My Health Care.

Bill Frist is now on the board of Select Medical Holdings Corporation in Mechanicsburg, PA. After all the work Frist put into (illegally) trying to stop Terri Schiavo from being removed from artificial nutrition and hydration, his stance on medical proxies and informed consent are rather evident.

Reader Writes: Racial Disparity in Health Care.

Check out the comment on my March 13 post regarding racial disparity in hospice enrollment. And please join the discussion.

How do we eradicate racism and discrimination from our health care delivery system?

Best Way to Limit Access to Legal Service? Intimidate Doctors.

From the conservative, "pro-life" site LifeNews, a new effort to deny the recent court ruling in Montana and to limit it's decision by intimidating doctors with threatened law suits. Just disagreeing with a law - because you don't understand it or feel your faith should be the law of the land - doesn't make you a righteous vigilante, justified in defying the law or blocking access to services with intimidation. Ask Scott Roeder. (And before I get all of Jill Stanek's readers yelling at me, I'm not saying that ADF threatened murder. Just bullying and career-altering lawsuits. All for their opposition to a private decision that should be made between a doctor and their patient and all because, you know, the dying and women aren't smart enough to make their own decisions but ADF is.)

A Montana pro-life group has issued a new analysis saying the decision by the state's Supreme Court to allow assisted suicide there didn't legalize the practice. The Montana Family Foundation says doctors who engage in the practice may still be charged for homicides there despite the Montana Supreme Court's decision in the Baxter case.

The pro-life group hired two attorneys, Greg Jackson of Montana and Matt Bowman with the Alliance Defense Fund, to analyze the controversial decision.

"The purpose of the analysis is to place the decision in perspective, and to dispel much of the misinformation surrounding the issue," said Jeff Laszloffy, president of the Montana Family Foundation.

"Contrary to recent headlines, the Supreme Court did not legalize physician assisted suicide. Medical personnel and institutions must understand that if they participate in assisted suicide they expose themselves to potential civil and criminal liability, and may even be charged with homicide," the pro-life former state legislator added.

"Within a very narrow set of constraints, if a doctor assists on physician assisted suicide and they're brought up on a murder charge, they might be able to make the claim of consent," Laszloffy said. "But if it falls anywhere outside that narrow set of parameters, it quickly goes over to a murder charge."

Kathryn Tucker, director of legal affairs for Compassion & Choices, the major pro-euthanasia and pro-assisted suicide group, told KAJ-18 television that the only objective of the analysis is to confuse physicians and patients.

"The obvious objective of the analysis is to create fear among physicians," she said. "This is shameful. It may prevent suffering dying Montanans from having this compassionate option."

"There is a safe harbor created for physicians who prescribe medications to a mentally competent, terminally ill patient, which the patient can consumer to bring about a peaceful death," Tucker said. "And a physician operating within those boundaries has no need to fear criminal prosecution."

While Tucker says the decision is clear, Laszloffy says the Montana legislature has room to put more restrictions on assisted suicide in place.

The Euthanasia Prevention Coalition sent LifeNews.com a statement over the weekend saying it and Montana State Senator Greg Hinkle agree with the new analysis.

They said the ruling in Baxter v. State, did not “legalize” physician-assisted suicide in Montana and Baxter instead held that a physician accused of homicide for killing his or her patient would be allowed to assert a “consent of the victim defense.”

A new article in the Missoulian newspaper indicates at least one person has died from an assisted suicide since the Baxter decision last year.

The Montana Supreme Court decision made the Rocky Mountain state the third in the nation, after Oregon and Washington, to allow assisted suicides.

Related web sites:
Montana Family Foundation - http://www.montanafamily.org
New analysis - http://www.montanafamily.org/portfolio/pdfs/Baxter_Decision_Analysis_v2.pdf

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.

Packing the California Courts.

At California Progress Report, Dan Aiello reports on the new push to add religious judges to local courts in California:

In what has been described as an attempt by right wing religious conservatives to "pack the courts" with judges who will oppose Separation of Church and State and "uphold traditional moral beliefs," an organization created by former Prop 8 activists is working to shift the San Diego Superior Court further to the right with a slate judicial conservative candidates to challenge four moderate incumbents of San Diego County's Superior Court in the June primary.

The candidates of the organization, Better Courts Now, were vetted on issues of Separation of Church and State, abortion, same-sex marriage and "traditional moral values," according to the group's web site and BCN leaders. In what has become the all-too-familiar alliance between religious fundamentalists and pro-business interests, Better Courts Now candidates also pledged their opposition to "end frivolous lawsuits against California businesses."

Challenging incumbent judges, most of whom are appointed by California's governors, is rare, but there have been challenges to the independence of the judicial branch by conservatives before, according to Jennifer Pizer, chief counsel for Lambda Legal, a national organization focused on the attainment of equal rights for gays and lesbians.

Must Read: Stephen's Post at Not Dead Yet.

What is this term disability? And how does it's flippant, inaccurate or egregious use affect the rights of the disabled?

Read Stephen's post at Not Dead Yet. I'm delighted to find that he and I have much more in common than our escalated and un-nuanced online spats have yet determined.

Here are two good clips. He's writing about the call by the Terri Schindler Schiavo Foundation for disability groups to rise up in support of their boycott of The Family Guy show on Fox for its disrespectful and tasteless skit about Terri Schiavo (on the eve of the 5th anniversary of her death, March 31):

Predictably, the Schindler family reacted. I guess I don't blame them. But in a press release they included this:

The Foundation is calling on all disability rights organizations and pro-life organizations to join us in admonishing the producers and writers of The Family Guy.

To my knowledge, no disability rights organization, including NDY, has chosen to join them.

This hasn't gone unnoticed by June Maxam at North Country Gazette. In her article "Where Are They Now?" Maxam lists the national disability groups that were involved in fighting the removal of Terri Schiavo's feeding tube. She then suggests that the "silence" from the disability community on "Family Guy" is "condoning and advancing the prejudice, bigotry and hatred of the disabled."

The fact is, we're busy with real crises - and the "Family Guy" skit doesn't come close to being a "crisis." NDY is directly involved with coalitions opposing assisted suicide and euthanasia in 4 states, active in a major "futile care" case in one other, involved with a developing court challenge over guardianship limits in another state, providing technical assistance to disability advocates on state legislation, and monitoring the media for grossly inaccurate reporting on the Final Exit Network and individual homicides of people with disabilities. On top of that, we are working with other national disability groups on other disability rights issues through a national network of advocacy organizations that are run by people with disabilities. The majority of our work isn't that visible -we're seeking change, not headlines.

SNIP

Speaking of disability advocacy, tomorrow the Family Research Council is hosting a panel on Terri Schiavo's death. Bobby Schindler is on the program, which describes him as follows:

Robert Schindler, brother of Terri; full-time pro-life and disability rights advocate

I'm sure the Family Research Council loves the conflation of disability rights and "pro-life." That's one thing they have in common with prominent "lefty" bioethicists. No one in the actual disability rights community appreciates it, though. And we don't appreciate the description of Bobby Schindler as a disability rights advocate.

During the fight to prevent the removal of Terri Schiavo's feeding tube, the Schindlers showed little understanding of disability rights - or of the potential importance of the involvement of national disability rights organizations in the debate. Surrounded by their prominent prolife supporters, they almost never mentioned the disability rights organizations supporting the struggle to save her life. If they'd made a habit of mentioning that, it would have been harder for news organizations - Fox, MSNBC, CNN, the networks, etc. to pretend this was all just one more battle in the "culture wars." Unfortunately, framing the fight in terms of the culture wars suited "handlers" like Father Frank Pavone and Randall Terry just fine.

I wish I could say that I have any evidence that the Schindlers have any better understanding of the disability rights community and disability rights issues today than they did back then. I don't. They are not involved in any of the battles mentioned above - and play almost exclusively to Christian Conservative audiences.

Ten Florida Billboards Renounce Separation of Church and State.

From TampaBay.com, an article on the 10 new billboards that will visibly grace Florida's byways renouncing the validity of separation of church and state in the U.S. Constitution:

A Hillsborough public policy group whose Christian platform included a push for a state ban on gay marriage has embraced a new attack on an old target: the separation of church and state.

Ten billboard advertisements against what activist Terry Kemple called the separation "lie" are being put up across Pinellas and Hillsborough counties. Seven or eight of the billboard messages already are in place, and the rest will be by the end of this week, Kemple said.

For the next six months, they'll be seen a million times a day, said retired businessman Gregg Smith, who rented the ad space for $50,000.

The message, as explained onwww.noseparation.org, is that "America's government was made only for people who are moral and religious."

"The Judeo-Christian foundation that the Founding Fathers established when America began is the reason that this country has prospered for 200-plus years," said Kemple, president and sole employee of the local Community Issues Council, which paid for the Web site.

"The fact is, for the last 40 years, as anti-God activists have incrementally removed the recognition of God's place in the establishment of our country, we have gone downhill."

Smith, 73, who spends half of the year at his Tampa home, brought the idea to Kemple's attention as a "separate ministry" needing local support. For now, the initiative is just educational, though both men left open the opportunity for future work.

Britain's Ed Balls Tackles Sex Education with New Bill.

A new British bill, introduced by Ed Balls and being lashed by every conservative organization in the country, would tackled discrimination and issues of informed consent in religious schools, making illegal the instruction of only religious ideology.

John Smeaton of the hyper-conservative Society for the Protection of Unborn Children about loses it on the bill:

Mr Balls's statements today not only confirm, but add further truth to the warnings that SPUC has been issuing for months about the government's plans - and the English and Welsh Catholic bishops'complicity in those plans. Please make sure that you have read andacted upon SPUC's latest campaign alert on the Commons debate later today.

(P.S. The reason why the Catholic Church's teaching on homosexuality is so important for the pro-life cause can be found in Pope John Paul II's Evangelium Vitae. In paragraph 97, Pope John Paul teaches that it is an illusion to think that we can build a true culture of human life if we do not offer adolescents and young adults an authentic education in sexuality, and in love, and the whole of life according to their true meaning and in their close interconnection.)

Yup, the end of the world as we know it comes just after children are exposed to fags!

Here's what Today reported Balls saying the bill would do:

• "If you are currently a Catholic school ... you could choose to teach only to children that contraception is wrong, homosexuality is wrong. That changes radically with this bill." (at 06:30 mins)
• "A Catholic faith school can say to their pupils we believe as a religion contraception is wrong but what they can't do is therefore say that they are not going to teach them about contraception to children, how to access contraception, or how to use contraception. What this changes is that for the first time these schools cannot just ignore these issues or teach only one side of the argument. They also have to teach that there are different views on homosexuality. They cannot teach homophobia. They must explain civil partnership. They must give a balanced view on abortion, they must give both sides of the argument, they must explain how to access an abortion, the same is true on contraception as well." (from 07:20 to 08:47 mins)
• "To have the support of the Catholic Church andArchbishop Nichols in these changes is, I think, very, very important, is a huge step forward." (at 09:05 mins)
• "[Catholic schools] cannot teach that homosexuality is wrong and that therefore it is OK to discriminate on homosexuality" (at 10:42 mins)
• "[T]he Catholic Church, which I really welcome, is supporting, for the first time, compulsory sex education with an opt out at 15" (at 12:25 mins) (JS: Mr Balls knows that the opt-out i.e. parental right to withdraw children from SRE classes, ends at 15, not starts. Also, what is unappreciated is that no child of any age will be able to withdraw themselves from SRE.)

But now Balls is lightening up on the strictures for religious schools - in Britain 1 in 3 - an issue that has worried those who praised the enlightened nature of the initial bill.

InsightsScoop has more information here.

Extra credit: Just imagine a bill of this sort here in the U.S.?!

LGBT End of Life Care.

For this, and a hundred other reasons, I write about end of life care. A new documentary, Gen Silent, looks at the plight of LGBT elders, often divorced from family, childless, pushed into care facilities and back into the closet out of fear for their care and treatment, told that they can still be "cured" of their "lifestyle." From Hospice Foundation of America's blog, hfahospice.blogspot.com.

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.

The Medical Right.

A fantastic article about the medical right, by Kathryn Tucker (wicked smart legal counsel for Compassion & Choices, end of life rights group) at the Journal of Legal Medicine. While her work is on religious imposition on patients' rights at the end of life, her logic and rationale apply directly to women's reproductive rights - indeed to all patients' rights. A quick clip: Medical Right organizations are delving ever more deeply into activism, policy promotion, and politics. They are expanding the range of issues they work on, forming new organizations, and consciously taking front and center roles in media and legal debates. The RCRC Report points out that the Medical Right has created a virtual “shadow medical establishment.” [FN8] Unlike *498 professional societies that represent physicians and other health care providers, medical schools, and teaching hospitals, most of the Medical Right groups are relat- ively unknown because they act outside of the normal channels of medical policy and practice. Evidence of the shadow medical establishment can be found in legislatures, the courts, and obscure profes- sional societies and journals. The goal is to establish an alternative body of medical fact to validate beliefs of the Christian Right and thereby advance its political agenda. Want proof that she strikes a cord? Here's Wesley J. Smith, everyones favorite "pro-life" patriot and Discovery Institute fellow, going wacko over Tucker's article, conscience clauses, informed consent and referrals. I know I've been banging the Establishment drum pretty hard lately but it is the drum that the Religious Right, the Medical Right - and if I may, the Legal Right - fear the most.