My 2003 Op-Ed on Terri Schiavo and Disability Concerns

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NDY was involved with the fight to prevent Terri Schiavo’s death for several years.  In 2003, I submitted an op-ed to the LA Times that was accepted and published.  It must have struck some kind of chord, because it ended up appearing in over 20 newspapers – in and out of the USA.

The LA Times has a free archive of its material, but it’s really cluttered with ads – ads which no doubt help to pay for the free archive.  As the author of the essay in question, I have reproduced it in full below, with a link to the article itself at the LA Times archive:

(Note – I did not get a say in the title.  Blame the editors of the LA Times, not me.)

 Disabled Are Fearful: Who Will Be Next?

Commentary
October 29, 2003 |Stephen Drake, Stephen Drake is the research analyst of Not Dead Yet, a national disability rights group.

Bob and Mary Schindler consistently refer to their daughter, Terri, as a disabled person. They’re right.

Although most newspapers are covering this story as an “end of life” or “right to life” issue, what ultimately happens to Terri Schiavo will affect countless other people with disabilities in this country.

Like many disabled people, Terri Schiavo is unable to tell us what future she prefers. She left nothing saying she preferred starvation to living with a disability. She never signed a legal document designating her husband as her surrogate in the event she became unable to communicate.

Despite this, media commentary is dominated by bioethicists and “end of life” experts telling us she should be left to die and explaining how “peaceful” starvation is as a way to die. To hear them tell it, Schiavo has no meaningful life. She can’t talk, they say, she can’t eat on her own, can’t walk and has no control over her bowels or bladder.

Thousands of people with disabilities across the United States are watching the case anxiously. In fact, 12 national disability groups have filed “friend of the court” briefs in opposition to the efforts to starve Schiavo. Obviously, we want to know how all those commenting in this case feel about the lives of people with Down’s syndrome, autism, Alzheimer’s and other disabilities. Are they next for death through starvation? It’s not so farfetched.

I was born brain-damaged as a result of a forceps delivery. The doctor told my parents I would be a “vegetable” for the rest of my life — the same word now being used for Schiavo — and that the best thing would be for nature to take its course. They refused. Although I had a lot of health problems, surgeries and pain as a child, I went on to lead a happy life.

Up until the mid-1980s, U.S. pediatrics journals routinely published reports on the selection criteria used to determine which disabled infants born in hospitals would be left to die.

One of the most notorious incidents involved a team at Oklahoma Children’s Hospital in the late 1970s that used a “quality of life” formula for children born with spina bifida that factored in the parents’ economic and educational level. Poor and uneducated parents and those on public assistance were more frequently advised to not treat their children. Twenty-four babies with spina bifida died, mostly from untreated infections. Not one person on the medical team was charged with a crime.

About 20 years ago, a hospital staff in Indiana was starving an infant with Down’s syndrome. A whistle-blower alerted authorities, and the district attorney went to court to order hydration. The judge refused. Public comment supported the idea that “difficult” decisions like starving disabled infants were best left to the privacy of doctor-parent consultation.

In spite of that, enough of the public was sufficiently outraged to create a stir that cut across the political spectrum in Washington. As a result, congressional legislation was drafted to prevent medical killings of disabled infants.

The legislation, which ultimately was passed, was decried by bioethicists, physicians and others as an attack on both the medical profession and the privacy of family decisions. As a result of the passage of the law, though, more of us avoided getting killed in hospital nurseries through denial of treatment.

Guardianship — which in this case was granted to Schiavo’s husband by the courts — has to have limits, especially when the stakes are the very lives of the people under guardians’ power. It’s important to remember that guardians have power over people, not property, and those people still have rights.

Terri Schiavo, Family Guy, Family Research Council – and a Reality Check

advocacy, culture wars, media coverage, media issues, Our News & Commentary Blog, reality check, schiavo

I really didn’t want to write this kind of post, but with some of the building noise related to Terri Schiavo, it’s become pretty clear that silence isn’t an option. Wednesday, March 31st is the fifth anniversary of Terri Schiavo’s death. I already had something planned for the blog that was bound to make some people unhappy, but very different than this post. (That other post will be published on this blog – on Wednesday at the latest.)

Last week, the show “Family Guy” opened with a short piece titled “Terri Schiavo – the musical.” Sorry – no link. It was offensive and inaccurate.

Of course it was. No shocker there. I decided years ago that I didn’t want to watch the show. For me, the real problem was that – out of four shows that I watched – two of them contained “gags” revolving around the humorous side of adults having sex with kids (or attempting to).  I don’t see the humor in those kind of “gags.” 

There are people I know who like the show and have told me I should watch it because there is material on the show I would find funny.  Based on my limited experience with the show, it’s kind of like telling me I should go grope around in an unflushed toilet because someone dropped something really good to eat down there and I’d enjoy it.

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.

On the state level, every disability advocacy group is fighting looming draconian cuts to life-sustaining services – cuts which, if implemented, will result in early and unpleasant deaths for many people with disabilities through an indirect, backdoor euthanasia via neglect and abandonment.

Which one of these things do the Schindlers and June Maxam want us to put aside while we go support the Schindlers in their outrage over this show?  It’s not like this is the worst thing the show has ever done – I think the bits I saw that turned me away were on an even lower level than the crappy piece on Terri Schiavo.  If a show that features gags around sexual innuendo and kids remains on the air and has no trouble finding or keeping sponsors, outrage over this skit won’t scare them away.

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.

I don’t blame the Schindlers for whatever decisions they made back then – they were desperate, exhausted, grasping at whatever straw presented itself.  They lost a daughter and a sister in a long, drawn-out nightmare.

But it’s a little hard to swallow the claim that Bobby Schindler is a disability rights advocate.  When the Schindlers ride into town, the “culture wars” ride in with them.

And at the Family Research Council panel tomorrow, the topic will be the “culture wars,” not disability rights, since there is no one from our community sitting on that panel.  –Stephen Drake

ADAPT – and NDY – Celebrate Community First Choice Option in Health Care

ADAPT, health care reform, Our News & Commentary Blog

Joe Biden is right – it is a big f___ deal.

First, here’s what ADAPT, a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom, has to say about the health reform bill passed by the House and signed by President Obama: 

News Release

For more information, contact:
Mike Oxford, (785) 224-3865
Bob Kafka, (512) 431-4085
http://www.adapt.org

ADAPT Celebrates Community First Choice Option in Health Care Reform

ADAPT, the national cross-disability grassroots group, today celebrates the inclusion of the Community First Choice (CFC) Option and other long term care-related provisions in the health care reform package passed by the House on Sunday, March 21. These provisions bring people with disabilities across America one step closer to home and community-base supports and ending the institutional bias in Medicaid. Twenty years ago, with the passage of the Americans with Disabilities Act, people with disabilities realized the beginning of a civil rights dream of access to all levels of society. Today, ADAPT continues to fight to protect that dream, re-committing to the enforcement of the ADA-based Olmstead Supreme court case, which holds that no person can be forced to remain institutionalized against their will.

The Patient Protection and Affordable Care Act and its companion legislation, the Reconciliation Act of 2010, together include several items related to home and community based services. For example, starting in October of 2011, the CFC Option will give states the choice of providing home and community based services to Medicaid recipients instead of simply forcing them into nursing homes. The federal Money Follows the Person program will be extended until 2016. Provisions of the CLASS Act are also included in the new legislation. States will have increased federal funding matching incentives to fund community services. Yet while passage of this legislation is a social landmark, much remains to be done.

Read the rest of the press release here.

We’re celebrating here at NDY as well. Assisted suicide, active euthanasia and withdrawal of treatment aren’t the only ways to cause the premature deaths of people with disabilities.  Underemployed or unemployed people – or those with “pre-existing” conditions have been left to fend for themselves in a profit-driven health care system in this country.  People who have to rely on emergency rooms for treatment don’t really get the same care for life-threatening conditions that can be gained through regular medical visits.  And, of course, those of us who are lucky enough to be insured get to “enjoy” premium increases since the cost of the emergency room treatments get passed on to us – and our insurers.

There are a lot of shrill voices out there – Tea Partiers being the loudest right now.  From “death panels” to “government takeover” they are talking about expansion of health coverage as though it’s the end of civilization itself.  And yet, I get the feeling from the Tea Party crowd that the only “solution” they have to offer for the health care crisis is to keep the current system in place – in which more people get pushed out of the system.  And that means more people die early and unpleasantly.  We like to call that “backdoor euthanasia.”

So, yeah, for all its faults, we are celebrating this long-overdue first step into ensuring health care for all US citizens.  It’s about bloody time.  And it’s a big f______ deal.  –Stephen Drake

Ann Neumann and Vancouver Sun: Dissing Disability Activists’ Opposition to Legalized Euthanasia

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Ann Neumann, writing on the Otherspoon blog, has stated in the past that she’s inclined to shy away from direct criticism of disability rights groups like NDY in the “right to die” debate, seeing it as “a trap.”

Neumann found a way around the “trap” last week by quoting someone else’s work.  Specifically, she quoted a “hit and miss” attempt at analysis of the impact of the disability rights movement in Canada published in the Vancouver Sun.

Here’s the relevant portion of the article in regard to assisted suicide and euthanasia, which Neumann also shares on her blog:

The battle for disabled rights has had other unpredicted twists and turns.

One of them is over the so-called “right to die.” As advocates for the disabled have continued battling for recognition, they have clashed with people who want laws in Canada and the U.S. permitting assisted suicide for those with severe disabilities and terminal conditions.

Even though polls show the majority of Canadians support regulated euthanasia, disability rights activists have strongly lobbied politicians to make sure no one, regardless of the severity of their disability, should be able to choose an assisted suicide.

In this increasingly bitter debate, disabled activists claim legalizing assisted suicide would be an ethical “slippery slope” that would lead to all disabled people, no matter the degree of their impairment, being devalued as human beings.

In turn, advocates for assisted suicide maintain the arguments of disabled-rights activists are a misplaced over-reaction to their proposals.

American readers should take careful note of the specific wording.  The debate in Canada is not limited to advocacy of assisted suicide or euthanasia for the “terminally ill” alone.  As I’ll get to in a bit, it’s not even limited to those who ask to die.

All the more curious that she’d highlight this, since one of her criticisms in her previous post responding (sort of) to Not Dead Yet, contained this:

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.

Paranoia?  Certainly not in Canada.

See, the reporter at the Vancouver Sun didn’t do his homework.  The one single case that galvanized the disability community in Canada in regard to this issue was the murder of a disabled 12-year-old girl by her father, who claimed it was a “mercy killing” after failing to pass her death off as a natural one.  Robert Latimer, who gassed his daughter Tracy in the cab of his truck, had many defenders – including members of the “right to die” movement in Canada.

Ruth von Fuchs, current president of the Right to Die Society of Canada, had some pretty unambiguous  quotes during the trial of Robert Latimer:

Proponents of euthanasia say that, until proper legal and social supports are in place, many people, like Latimer, have to take the law into their own hands. “This law is being written unofficially in emergency rooms and intensive care wards every night,” says Ruth von Fuchs, a member of the Right to Die Society in Toronto. Von Fuchs views Tracy’s death as part of a “continuum” that begins with brain-damaged infants, some so severely handicapped that doctors quietly remove life support within hours of birth. It is unfortunate, she adds, that because mercy killing has been “criminalized,” Latimer felt he had to act alone, without the help of a social worker or medical expert. Von Fuchs, and other members of the euthanasia movement, is calling for a change in attitude to mercy killing. “In our society, we forbid people to give up,” she argues. “We say, ‘Never say die,’ but sometimes you have to stand back and realize that really is a cliché. We cannot fix everyone every time forever.”

You want a clearer statement from a leader in the Canadian “right to die” movement?  Here is an excerpt from a 1997 NY Times article quoting the late Marilyn Seguin, then the executive director of of the Canadian group Dying with Dignity:

Marilynne Seguin, executive director of Dying With Dignity, a Toronto-based group promoting freedom of choice for physician-assisted deaths, said that the Latimers had already lived under a sentence during the 12 years that Tracy was alive and that to add the 10-year punishment “is quite unconscionable.” (emphasis added.)

Going back to the original article, opposition of disability rights activists – and mistrust of the motives of euthanasia advocates – might seem less like an “overreaction” and more an appropriate reaction with more information.

The Vancouver Sun reporter failed to supply a full context for the nature of the real debate here – through laziness, sloppiness or reasons unknown.  Whether Neumann found this appealing due to true ignorance or a simple wish to use misinformation is anyone’s guess.  But even with the limited information available in the article, she certainly can’t accuse disability activists of conflating “terminal illness” with “disability.”  Disability is openly on the agenda of the euthanasia proponents in Canada.

It is here in the US as well.  The larger organizations just favor an incrementalist approach and are a little embarrassed by the recently publicized more radical activities of the Final Exit Network.  –Stephen Drake

Bad Cripple on Washington State Death Toll (blog recommendation)

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Earlier this month, Washington State released its report on the first 10 months of its brand-new assisted suicide law.  You can read a pretty typical press account at this NY Times link.

However, neither the Times nor most of the media gets at some of the troubling information that emerges from this report – limited as the information is.  The best analysis I’ve read so far is at Bad Cripple, the blog maintained by Bill Peace.

Here’s an excerpt from his analyis and comments from his blog essay “Assisted Suicide in Washington: Death Toll 36“:

Why are people choosing to die? Here is where we get into why assisted suicide is so dangerous. I am opposed to assisted suicide as are many others with a disability (though not all) because of the reasoning involved and justifications used to make it legal. So, why did people choose to die in Washington: from the executive report.

Table 3. End of Life Concerns reported from the After Death Reporting From. Data is available for 44 of the 47 participants in 2009 that died.

  • Losing autonomy, 100%
  • Less able to engage in activities making life enjoyable, 91%
  • Loss of dignity, 82%
  • Losing control of bodily functions, 41%
  • Burden on family, friends/caregivers, 23%
  • Inadequate pain control or concerns about it, 25%
  • Financial implications of treatment, 2%

I am not terminally ill but have experienced or felt every single one of the above feelings. I do not have the ability to walk and hence have lost some individual autonomy in certain circumstances. There are activities I once enjoyed that I can no longer do that made life enjoyable. I have lost a degree of dignity. I am certainly socially inferior, less dignified, to those who are bipedal. I have lost control of many bodily functions. I do worry about being a burden to my son when I am old. I do worry about the financial implications of my disability. I would be a fool if I thought otherwise considering that I am sitting on a $400 wheelchair cushion designed to last two years at most (insurance does not cover such luxuries). I have in the past experienced gut wrenching pain that made me wish I was dead. Yet here I sit at my desk and cannot help but be perplexed. Why does my crippled body command so little respect. Why is my existence so easily called into question?

Please go and read the rest of the blog entry here.  –Stephen Drake