Disability and Ethics Conference This Weekend - Low Expectations Based on Past Performance

On July 13, 2006, about 40 disability activists protested a bioethics conference in Albany, NY.  The picture above shows 7 of the protesters (there were about 40 in total) who successfully invaded the conference, holding signs and chanting "Nothing About Us Without Us!"

Here's an excerpt from our flyer for the protest:

Disability activists are calling the Alden March Bioethics Institute’s Conference on “Bioethics in a Divided Democracy” a sham and a further effort to make sure that other stakeholders get shut out of important public policy debates.  The conference brings together bioethicists from the “right” and “left”.  The protest has been organized by Not Dead Yet, a national disability rights group that organizes for the disability community to oppose legalized euthanasia, assisted suicide and other forms of medical killing.

“We’re calling this conference a sham for a number of reasons,” says Stephen Drake, research analyst for Not Dead Yet.  “First, an important agenda that all participants in this conference share is to keep other stakeholders out of policy debates and protect their roles as the sole ‘experts’ on public policies affecting people with disabilities and the rest of the American public.  Second, it’s clear that many of the players in this  conference are working to keep our democracy a ‘divided’ one.  Organizer Glenn McGee takes a blatantly partisan approach in his bioethics advocacy.  His definition of ‘progressive’ appears to be to marginalize, exclude and sling mud at minorities who disagree with him, rather than engage them in meaningful debate.  The ‘frame’ of this conference advances that agenda for him.”

Disability activists point out that they have plenty of grievances with both ends of the ideological spectrum.  Conservatives claiming to respect life have attempted to cut off Medicaid payments for feeding tubes in both Missouri and Florida.  So-called, “progressives” have been advancing “futile care” statutes, which hospitals use to deny care to patients who they think are “too disabled” to benefit, even when that treatment is demanded by the family or the individual herself.  Glenn McGee has found new allies in Compassion & Choices, whose main mission is to legalize assisted suicide in this country.  The group’s latest “victory” was to lobby successfully for a statute in Colorado that gives medical professionals blanket immunity from manslaughter charges as long as an individual who has died in their care consented to palliative care.

Imagine my reaction - four years later - when I saw the following conference announcement:

Disability and Ethics through the Life Cycle: Cases, Controversies, & Finding Common Ground, May 21-22, 2010, Union College, Schenectady, NY

Despite a common interest in facilitating good medical care, bioethicists and members of the disability rights community sometimes differ in their approach to issues arising in the bio-medical settings, especially on such polarizing issues as abortion and physician-assisted suicide. Focusing on these polarizing issues, however, distracts attention from other ethical issues that affect people with disabilities in biomedical contexts. This conference will offer a forum for bioethicists, disability-rights advocates, and other stakeholders with a different focus for discussing these issues by viewing disability from a life -cycle perspective. People confront disability through the life cycle: infancy, childhood, reproductive years, middle age, and old age. At each age they confront situations with ethical dimensions that present them, their families, and their caregivers and biomedical researchers with ethical challenges. This conference is designed to promote interdisciplinary conversations about these less frequently discussed ethical issues. (Emphasis added.)

Two other things about the announcement and paper solicitation.  It states that "no papers on prenatal issues or assisted suicide will be considered."  The second item of note is that one of the main sponsors is the Albany Law School, which means many of the same players from the 2006 Albany bioethics conference are involved in the planning and framing of the event.

There were and are a number of disturbing aspects of this announcement.  The suggestion that abortion has been a divisive issue between the bioethics community and the disability community is a gross distortion at best.  To the extent that prenatal issues have been discussed by disability scholars (and NDY has never taken part in these discussions in any way), the focus has been on prenatal screening and selective abortion for reason of future disability.  The criticisms don't generally translate into suggestions for radical public policy changes.

As to assisted suicide, one would think from the description that there's been a rich dialog between bioethicists and disability advocates.  If there has been such a discussion, I sure missed it.  It also seems to imply a coherent position on the part of mainstream bioethicists in support of assisted suicide - something that always got vehemently denied when we suggested that was the case.

Overall, though, is the glaring sense of entitlement that assumes the right to set the parameters regarding what topics are acceptable to discuss - especially insulting when directed at a group of people generally excluded and derided in your profession.

A couple of weeks after this announcement came out, Diane Coleman, NDY's founder and president, received an invitation to to be a plenary speaker at this conference that seeks - according to its title - to find "common ground."

Give me a break.

First of all, there have been several single-shot events by different entities over the years that accomplished nothing - except perhaps for the bioethicists who sponsored the events to pat themselves on the back for their one-time exercise in inclusion.  And, having done that, return to exclusion as a matter of standard operating procedure.

Mark Kuczewski, one of the plenary speakers, organized one such event at the Neiswanger Institute for Bioethics and Public Policy.  Kuczewski organized a conference around the topic of ethics and disability in 2001.  How did it go?  Well, there's been no communication between NDY or other disability activists with Kuczewski and the Institute since then, but he has continued to write about disability, in a way that seeks to carve out a space for himself as some kind of arbiter in determining what is reasonable in the criticism of disability activists and which points can be safely ignored.  This is more or less what he did in a 2003 article written with Kristi Kirschner in the journal Theoretical Medicine.  One especially telling aspect of that article is when they wrote that activists had "found a manifesto in Wesley Smith's book, The Culture of Death."  It's a deliberate and marginalizing image to put activists in a wagon pulled by someone else's horse.

Another prominent participant in this event is Alicia Ouellette.  If you check out the link, her publications and presentations show she had developed an aggressive "interest" in disability and "end of life" - the latter a term she uses frequently without ever really defining.  I first noticed Ouellette when she seemed to show precognitive ability when she wrote an entry on the bioethics blog titled "Important End-of-Life Case in Massachusetts Reaches Critical Point." The entry was about Haleigh Poutre, an abused 11-year-old girl who was beaten so badly she went into a deep coma.  At the time of Ouellette's blog entry, the MA Supreme Court hadn't rendered a verdict to the challenge of treatment removal on the part of her adoptive stepfather, who no doubt sought to beat a murder rap.  Nevertheless, her situation was referred to as an "end of life" case by Ouellette.  And Ouellette didn't find it worth revisiting the subject two months later - after the judge had sanctioned Haleigh's right to die a "dignified" death, she began to come out of the coma and is alert and doing well at last report.

Writing in the Oregon Law Review in 2006, Ouellette wrote out her analysis on "Disability and the End of Life."  In the paper, she accuses activists of conflating disability and terminal illness.  Leaving a debunking of this aside, I think it's worth noting that neither Ouellette nor other mainstream bioethicists have attacked the Final Exit Network or Compassion & Choices for their very blatant - and successful - maneuvers to conflate terminal illness and disability (and voluntary vs. involuntary, for that matter).  This article is a goldmine of ad hominem attacks and selective storytelling.  She makes sure to tie disability activists to religious political groups in relation to Schiavo, but also fails to mention the twenty or so national disability groups that expressed concerns over Schiavo's situation and what it meant about dismantled protections for people under guardianship.  She "tells the story" of Elizabeth Bouvia, but without relating the personal events in her life that might have led any young woman into a downward slump.  She talks briefly about Larry McAfee but fails to credit disability advocates as the ones who got him what he wanted in order to live - a place to live outside of an institution. (CORRECTION: I have reread the article in question and Ouellette does indeed relate several personal losses and setbacks in Bouvia's life cited by disability activists.  Later, though, she apparently gives them short shrift by referring to the "power of choice" - implying giving Bouvia an opportunity to die with medical assistance empowered her to live.)

Ouellette gets to do a session with another bioethicist describing the "diverging perspectives" between her community and ours on "classical cases" - Bouvia among them.  Evidently, the nondisabled bioethicists get to give both their take on these stories as well as ours.  It's a clear message of just whose perspectives and interpretations count - and whose don't.  Who speaks matters.

Similarly, Ouellette, along with Robert Baker - provides a closing and commentary at the end of the conference.  That tells us in advance whose evaluation of the issues really matters.

I could go on for quite awhile with a "rogue's gallery" in terms of this conference, but even I'm getting tired of reading this right now.

If you get the idea that I'm not really thrilled about going to this, you'd be right.  Aside from Neiswanger and this event, the Hasting Center, The Center for Practical Bioethics, and a couple of others have hosted little "events" mingling us common folks with the bioethicists.  They produced no results, no follow-up.  Zip.

Unfortunately, I have to be there.  Believe me, this is not my idea of a great or productive weekend by a longshot.

If the past is any good indicator of the future, that is what this will be.  One more entity that can pat itself on the back for a moment of inclusiveness - and go back to the real business of marginalizing disability advocates and activists.  They'll co-opt those things that they approve of and attempt to understand how better to undermine us in the future.

The reality is that this "discourse" around bioethics is more than just an exchange of philosophies, ideas, and experiences.  At the core, this is a political struggle over public policy - a struggle between those who have power and seek to hold onto it and those directly affected by the policies who want to take power,

And no one knows it better than the bioethicists who are hosting this event.

Just to be clear - I don't think that the real "goal" is to find "common ground" - the goal is to use this to further bolster the dominance of bioethicists in public policy discussions.  I don't believe it - I've seen too much of this kind of stuff before.

Fool me once, shame on you.  Fool me 4 or 5 times -- someone give me a swift kick in the head to remind me never to fall for it again.  --Stephen Drake

Connecticut: Assisted Suicide Advocates Attempt to Exploit Tragic Murder-Suicide

On Monday of this week (May 10), there was one of those all-too-familiar tragedies that appear in the news on a regular basis.  In the one of the earliest and most comprehensive articles covering the story, reporter Ann DeMatteo wrote an article titled "North Haven deaths believed to be murder-suicide":

NORTH HAVEN — A well-known town family is suffering its second tragedy in a decade following the death of a husband and wife in what police believe was a murder-suicide.

Life was never the same for Thomas and Joan Vanacore of 2 Pleasant Drive after the Sept. 11, 2001, death of their son, Edward Vanacore, 29, who worked at the World Trade Center. More recently, Thomas Vanacore was being treated for a late-stage cancer, and his wife had Alzheimer’s disease.

Police received a 911 call about 3:30 p.m. Monday when a visiting nurse known to the couple reported the shooting. The nurse had received permission to run an errand, and returned to find the scene. Her name was not released, and she declined to be interviewed.

According to Capt. James Merrithew, the Vanacores were found by authorities in an enclosed porch at the rear of the house. Joan Vanacore, 70, was found dead when paramedics and police arrived. Thomas Vanacore, 73, was taken to Yale-New Haven Hospital where he died.  Early indications are that Thomas Vanacore shot his wife and then himself, police said. 

(That early assumption has been pretty well upheld and is believed to be the case.)


North Haven is in Connecticut, where Compassion & Choices (C&C) - the largest and most aggressive advocacy group for legalization of assisted suicide - is currently pursuing a legal gambit to decriminalize doctors giving suicide assistance to patients diagnosed as "terminally ill" in Blick v. Division of Criminal Justice.


The spinmeisters at C&C just couldn't let a perfectly good tragedy go unexploited.

On Wednesday, May 12th, the organization issued a press release saying that this case "highlights a need for aid in dying.":

PORTLAND, OR – Compassion & Choices, the nation’s largest advocate for end-of-life care and choices, responded to the tragic deaths in North Haven,Connecticut, described as “a murder-suicide,” of 73 year-old Thomas Vanacoreand 70-year-old Joan Vanacore on Monday, May 10. The tragedy could andshould have been avoided. Thomas Vanacore was reportedly dying of throat cancer and his wife Joan of Alzheimer's disease. Thomas is reported to have shothis wife and then himself to death. (Emphasis added.)

****

The Vanacores should have been able to turn to their physician if they found their dying processes to be unbearable and request a prescription for medication they could consume to bring about a peaceful death. This option, known as aid in dying, is openly available in Oregon, Washington and Montana. A pending lawsuit in Connecticut asks the court to find that Connecticut law does not outlaw the practice. In Blick v. Connecticut the Connecticut Superior Court is asked to recognize that when a dying patient consumes medication prescribed for the
purpose of bringing about a peaceful death that this is not “suicide” and a physician who provides such a patient with that prescription is not within reach of a Connecticut law that makes a crime of assisting another person to “commit suicide.” Medical and mental health professionals recognize that suicide and the choice of a dying patient for a peaceful death are starkly and fundamentallydifferent. (Emphasis added.)

If you're hearing a loud noise right now, it's probably a bullshit alarm going off.  There's more:

Kathryn Tucker, co-counsel to the physician plaintiffs in the Blick case, and Director of Legal Affairs for Compassion & Choices, said, “It is tragic to hear of dying patients resorting to the horrific violence of death by gunshot, and here it is compounded by the tragedy of the husband first shooting his wife and then himself. Dying patients in Connecticut should be able to turn to their physicians and discuss all end-of-life options, including aid in dying. If the patient feels that the burden of suffering imposed by the dying process is too great to bear, he or she should be able to choose aid in dying, and have the option to die at home, in familiar surroundings, with family present at the bedside, in a peaceful, dignified manner. (Emphasis added.)

Why is this bullshit?

Two reasons:

I've read all the press coverage concerning the deaths of the Vanacores.  Not one single article claims that Joan Vanacore was "dying" of Alzheimer's disease.  Alzheimer's can only be considered "terminal" in the final stages - a stage at which the person isn't legally competent to request help in comitting suicide.  While she apparently wasn't in the most advanced stages of Alzheimer's, Joan Vanacore had apparently reached a point where she wouldn't have been considered legally competent to make a life-and-death decision, according to her son:

John Vanacore, of North Haven said he doesn’t believe his parents conspired to end their lives, as his mother “wasn’t cognizant enough” to make such a decision, but that his father was thinking about others in the family. “My father was very private, but I feel he felt he was dying and didn’t want to have her be a burden on anyone,” he said.

So that's the second reason: Competence. C&C pays lip service to the principle of limiting legalization of assisted suicide only to those people who are diagnosed as "terminal" (expected to live no longer than 6 months) and who are mentally competent to make the request.  Joan Vanacore wasn't "dying" and she wasn't regarded as "competent."

Is C&C suggesting that legalization would somehow have made it possible for John Vanacore to discuss his wish to end his wife's life with a doctor?

There are only two ways I can think of right now to interpret this cynical exploitation of a tragic situation:

1. C&C is testing the limits of the public's gullibility.  They might be emboldened right now, seeing how the Final Exit Network - with its "open door" policy of suicide assistance to nonterminal old, ill and disabled people have gotten a sympathetic free ride in the press - and in many cases misreport the group as "aiding" people with "terminal illnesses."  They might also have been pleasantly surprised at how the combined marketing efforts of HBO and CNN have repackaged Jack Kevorkian - from a lawless creepy ghoul to an eccentric champion for the terminally ill.  So maybe they're keeping they're fingers crossed that maybe the public really is too stupid to notice that the person who was killed wasn't dying and didn't ask to die.

2. It's also possible that C&C is testing the waters with this release.  Anyone familiar with the passions of assisted suicide/euthanasia activists knows that the "terminally ill" limitation being promoted at present is just the first step in an incrementalist strategy.  Most of the supporters of assisted suicide and euthanasia want much broader "elegibility" - similar to the expansive eligibility in the Netherlands and Switzerland.

Time will tell.  I'm hoping that the public really isn't as gullible as C&C seems to think.

In any case, after this latest gambit by the organization, C&C will now be referred to on this blog as "Conflation & Con jobs."  They've earned the name.  --Stephen Drake

Update on Oral Argument in Pennsylvania Supreme Court Guardianship Case

Last week, this blog reported about scheduled oral arguments in front of the Pennsylvania Supreme Court regarding the limits on a guardian's powers - specifically, whether or not guardians have the right to refuse life-preserving treatment - treatment needed to save the life of a person legally lacking decisionmaking capacity and who is neither dying nor permanently unconscious.  The original decision by the lower court was reported in this 2009 blog entry.

The following is an account of the oral argument from Mark J. Murphy.  Murphy is the Executive Director of the Disability Rights Network of Pennsylvania (DRNPA).  DRNPA filed an amicus brief in this case, and was joined by NDY, the Arc  of Pennsylvania, Achieva, Vision for Equality, Liberty Resources, Inc. and Pennsylvania Developmental Disabilities Council.  Account follows below:

I attended the oral argument held before the Supreme Court of Pennsylvania on May 11 in Harrisburg in the David Hockenberry case.  Here is my brief summary of the argument, along with a few comments.

The parents’ lawyer, Christopher Lucas, presented his argument first.  He began by telling the court that “regrettably” there is language in the Superior Court opinion that seems to frame the case as a “right to life” case.  Mr. Lucas said that they parents’ actions regarding not authorizing the mechanical breathing device was not done in order to end David’s life, although he then said that the “record is unclear” as to why the parents chose not to consent to the use of the breathing device.  This was a very odd way to begin the argument, especially since he seemed to be trying to defend his clients’ motives but then did not offer another, more positive motive for the parents doing what they did.

Mr. Lucas then moved to the substance of his argument, which I think can be summarized in two points: 1) the guardianship law trumps all other laws or policies, including the later-enacted Act 169; and 2) courts must defer to the judgment of a guardian regarding what is in the best interest of the incapacitated person, even when the alleged best interest is the withholding of medical treatment.  Justice Baer asked Mr. Lucas if, given that the guardianship law does not permit a guardian to consent, for example, to a sterilization or an abortion, is it reasonable to think the law would allow a guardian to make a decision that would result in the death of an incapacitated person not at the end of life.  Mr. Lucas responded by arguing that the statute has to be construed literally, i.e., the law lists some powers the guardian does not have, but it does not say a guardian has no power to make life and death decisions, and thus courts should find that the guardian has such a power.  Justice Baer then questioned whether that position wasn’t “absurd” given that the legislature cannot list every possible power a guardian might possess.

Mr. Lucas then returned to an argument he made much of in his brief, i.e., that ruling against the parents means that David’s right to make medical decisions has been denied.  Mr. Lucas argued, as he did in his brief, that David has the right to refuse medical treatment and, since he is incapacitated, someone has to be appointed to exercise that right for him.   As we noted in our brief, this argument is not supported by the law, and I doubt it will make any headway with the court.

Mr. Lucas ended his argument by telling the court that it can decide this case without implicating Act 169.  He emphasized, as he had previously, that the guardianship law is controlling in this situation and that Act 169 does nothing to affect the powers of guardians to make decisions.

Howard Ulan then argued on behalf of the Department of Public Welfare.  Much of his early argument was spent responding to questions from a couple of the justices about the difference between a health care agent and a health care representative and other technical issues, including whether a guardian is automatically a health care agent.  Mr. Ulan dealt with all of those questions appropriately.

Justice Baer then asked if the difference between a guardian and a health care agent or representative is relevant at all in this case.  Mr. Ulan correctly noted that the distinction doesn’t matter because a guardian does not have the power to refuse to consent to life-preserving treatment to someone not at the end of life (or permanently unconscious) and a life-long incapacitated person, like David, cannot have a health care agent.

Mr. Ulan emphasized that the Commonwealth has made a policy decision through the enactment of Act 169 that it is not permissible to withhold life-preserving treatment to incapacitated persons not in an end-of-life situation or permanently unconscious.

At the end of the argument, Jane Adams, the lawyer appointed to represent David, spoke briefly to note her agreement with the arguments made by DPW and to point out that David made a full recovery and is now in good health.

It is often difficult to predict how a court will rule based on what occurs at an oral argument.  It is particularly difficult when, as in this situation, only a few of the justices ask any questions of substance.  Three of the justices did not speak at all, and two others asked only one or two relatively minor questions.  I continue to believe, however, that our side has the far stronger legal argument and so am optimistic that when the justices carefully review the briefs, etc., the arguments made by DPW and that we supported and supplemented will prevail.

As usual, we are thankful to all players involved - especially to Mark Murphy and the DRNPA for their work, leadership and advocacy.  We'll post the outcome here on this blog whenever it's known, but that may be a wait of some months.  --Stephen Drake

The "Right to Die" Expands Into New Territory

Sometimes I think I've lost the capacity to be surprised by new developments.  I tend to think I've grown so jaded that nothing that comes up can really surprise me.  I think that in spite of the fact that I do get surprised on occasion.

This week's collision with surrealism came in the form of two news stories - two days apart and in two different states.  Both are stories on the "right to die," but I can guarantee they're nothing like what you would expect.

On May 10th, Delaware Online featured a story by reporter Sean O'Sullivan titled "Lawyers spar over killer's right to die."

On May 12th, WAFB.com in Louisiana featured a story by reporter Jim Shannon titled "Right to die bill passes through House committee."

The stories both deal with the death penalty.  Personally, I think that "right to be executed" would be a more accurate term for the stories, but I guess that doesn't have the same comforting, compassionate tone as the "right to die."  Maybe that's the point.

The Delaware story involves 26-year-old Shannon M. Johnson, convicted of murder for shooting the companion of an ex-girlfriend, whom he also shot at a later date.  Johnson doesn't want any appeals on his behalf and would like to "get his execution over with." 

The controversy involves maneuvers by a federal defense attorney to take the case over and appeal the death penalty over Johnson's wishes - and contrary to the legal judgment of the local defense.

It gets a little complicated and you can read the whole story here.  It's worth noting that the "D" word - "dignity" comes into play as well, in this criticism from the local defense counsel:

"What they are really doing is basically being very disrespectful to his dignity by trying to draw this out," he said. "While I don't agree with the decision, I think they need to respect it."

The Louisiana story is a little more straightforward.  Here is the intro to what the reporter is calling a "right to die" bill:

BATON ROUGE, LA (WAFB) - A bill to expedite the right to die passed out of a Senate committee Tuesday. The bill provides notification to convicted death penalty defendants of their right to waive their appeals.

Sen. Dan Claitor, R-Baton Rouge, sponsored the bill. It now heads to the full Senate for debate. The case of Gerald Bordelon, a man convicted in the death of a young girl in Livingston Parish, made history when he effectively waived his rights to appeal and was executed this year.

There's a link to the bill at the WAFB site and I've read it.  There is no mention of a "right to die" in it.  It can only - as far as I can tell - have originated from the fevered imagination of the reporter involved.  The same is probably true of the Delaware story.

Still, I have to wonder if this will catch on.  It really sets off my  weird-o-meter to have two stories like this so close together in time.  There is a certain grim logic to it and it could be carried even further, I guess.

In 2007, I engaged in a debate on euthanasia and assisted suicide with a professor at Washington State University.  During the Q&A period, someone asked us about "involuntary euthanasia."  My worthy opponent gave a more-or-less textbook explanation about what it was and how it was unethical in "almost" all cases.  While listening, I had one of those rare flashes of perverse inspiration and gave my own response: "Involuntary euthanasia," I explained, was legal in many states and practiced pretty regularly in some of them.  We just didn't use that particular term - we usually refer to it as the "death penalty" - using painless lethal injections to put people to death.  The good professor was at a loss for words - and any kind of response, since the grim logic was pretty solid.

Truthfully, I thought I was being a little fanciful at the time.  But then again, I wouldn't have dreamed of hearing or reading about death penalty issues under the framework of a "right to die."  How long will it be before people who decline appeals to their own executions are deemed to be subjects of voluntary euthanasia?

Certainly, it wouldn't be too cynical of me to expect to stories like these framed as "end of life" stories.

Far-fetched? Maybe.  But until this month, seeing the death penalty framed as a "right to die" issue was pretty far-fetched too.  --Stephen Drake

Ms. Magazine Blogger Praises Kevorkian, Disses People With Disabilities, and Angers Some Feminists With Disabilities

(Note - I'm still trying to process the briefs in the Pennsylvania Hockenberry case.  No word on the oral arguments yet.  I'm hoping for some reports and/or press coverage by tomorrow.)

Last week, I was alerted about a blog entry on the HBO biopic You Don't Know Jack that was published on the site of Ms. Magazine.  Like most of the bloggers who have reviewed this film, Carol King is a big fan of the movie and of Kevorkian himself.  In Kevorkian and the Right to Choose, King explains her close connection to the Kevorkian saga - she was the executive director of the Michigan Abortion Rights Action League, which was right across the street from the office building of Geoffrey Fieger, Kevorkian's attorney.

In a ringing endorsement of Kevorkian's career, she carefully steps around any mention of Kevorkian's "assistance" in the suicides of non-terminally ill individuals, which were in fact more typical of the people whose lives he helped end.  She also appears to be totally ignorant about the 30 years prior to Kevorkian's suicide assistance spree - in which he passionately advocated for the establishment of the specialty of "medicide" - a specialty in medicine that would involve killing patients - death row prisoners, people with dementia, disabled infants, etc. - in a way that they could also be exploited for live human experimentation and organ harvesting.  See this post for more information.

Given her role as the director of an organization that advocates for abortion rights, it's probably not surprising that she draws a straight and simplistic line in her entry - a line between assisted suicide and abortion.  (This is, of course, the same line that prolifers like to draw - it seems to be an area of agreement between euthanasia proponents and Christian prolifers.).

But King pulled something that evoked a response that neither she nor her editors at the magazine anticipated.  She wrote the following:

“The “right-to-lifers” enlisted the disabled in their cause when they cautioned that allowing people to choose to die would soon become their “duty to die.” They used the same rhetoric during the recent health-care reform debate when they conjured up fears about Obama’s “death panels.” This fear-mongering is adapted to the abortion issue when claims are made that women blithely abort “imperfect” fetuses.”

This brought an unexpected shitstorm of anger from feminist disability activists, some of whom don't even oppose assisted suicide, but were and are enraged by the automatic marginalization of people with disabilities by the use of the term "the disabled" and the suggestion that we're pawns of the Christian Right.

The quote above is no longer on the blog.  After several days of angry complaints from feminist disability activists, Ms. editor Michele Kort wrote the following:

Both the writer and the editors of the Ms. blog would like to apologize for using the expression “the disabled” rather than “people with disabilities” in this post. It was careless on our parts not to catch both the inaccuracy and the offensiveness of that term. Also, the post has been edited to reflect that the right wing TRIED to enlist people with disabilities in their campaign; quite obviously, people with disabilities have the agency to refuse such overtures.

There are a number of problems with the edit:  First of all, the new version gives the impression to uninformed readers that there wasn't any disability opposition to Kevorkian at all.  Real respect would entail an acknowledgment of that opposition and the distinctiveness of our bases for opposition - as opposed to Christian pro-life groups.  It seems that people who like to think of themselves as "progressive" have only two ways of dealing with disability activists opposing assisted suicide and euthanasia: Label us "tools" of the religious right - or just pretend that we don't exist, we were never there, we don't count.

I also find it interesting - and telling - that Carol King herself didn't deliver the apology.  In fact, she hasn't entered a comment or reply to this blog entry at all.  It's interesting because if you check the link to her name, you can view other recent blog entries by her - she's likes to engage with people who comment on her blog entries - but now I see it's only if they are praising her.

I recommend people reading the blog entry and the comments entered by disability activists.  After that, I want to recommend a few other blogs that weighed in on this way before I did:

• I believe that Knitting Clio was the first one to take this blog entry on in "Blogging Against Disabilism, Part II;"
• Lauredhel says it's "time to push back against this fuckery" in "The Disabled" are pawns of the right wing, sez Ms Magazine;
• and Anna posted "An Open Letter to Ms Magazine Blog" at FORWARD - FWD (feminists with disabilities) for a way forward.

Just to reiterate one point made above.  A number of feminists with disabilities have taken Carol King to task on and off her blog.  She could at least show them the respect of replying to them directly instead of leaving it to her editor to do something she probably finds distasteful to have to do herself.  --Stephen Drake

Pennsylvania: New Month, New Oral Arguments in a New State

Next week, the Pennsylvania Supreme Court will be hearing oral arguments in a case we reported on due to an earlier court ruling over a year ago(from the mailing sent out the the Disability Rights Network of Pennsylvania):

Set forth below is a summary of an important new decision by the Pennsylvania Superior Court regarding whether, and under what circumstances, a guardian has the authority to refuse treatment for an incapacitated person who does not have an end-stage medical condition or is permanently unconscious. In brief, the court held as follows:

1. A court order that appoints a person as a plenary guardian does not authorize that person to refuse life-sustaining treatment for incapacitated persons who do not have end-stage medical conditions or who are not permanently unconscious. In other words, a guardianship order by itself does not authorize the guardian to make such a decision.

2. A guardian must secure a special court order to allow him to refuse life-sustaining treatment for an incapacitated person who does not have an end-stage medical condition or who is not permanently unconscious. The guardian has an “extraordinary burden” to prove by clear and convincing evidence that death would be in the incapacitated person’s best interests, i.e., that extending life would be inhumane under the circumstances. The guardian must present specific medical evidence about the incapacitated person’s diagnosis, prognosis, pain, etc. and, if at all possible, evidence concerning the incapacitated person’s wishes either prior to or during the treatment. The individual’s cognitive disability should generally not be considered.

In sum, this decision will make it extremely difficult, if not impossible, for a guardian to secure an order that would allow him to refuse life-sustaining treatment when an incapacitated person does not have an end-stage medical condition or is not permanently unconscious.

This ruling has been appealed.  Oral arguments will be held in Harrisburg, PA on Tuesday, May 11, 2010.  NDY has signed onto the amicus brief written and fled by Disability Rights Network of Pennsylvania. The other organizations on the brief are: the Arc of Pennsylvania, Achieva, Vision for Equality, Liberty Resources, Inc., and Pennsylvania Developmental Disabilities Council.

A short time ago, I received several briefs related to the case.  I'll try to review them and make some sense of them over the weekend so I can report more on Monday.

In the meantime, you can read the amicus brief filed by Disability Rights Network of Pennsylvania, NDY et al here.  There are links to both pdf and word versions of the amicus.  --Stephen Drake