Articulating our perspective to progressives

"We Love Our Tubes!"

Death Watch: Terri Schiavo

Some Facts in This Matter Of Starving Terri Schiavo

Disability groups seek legal protection for 'incapacitated' people

Terri Schiavo: Better Dead Than...

Feminists and Terri Schiavo

INDEX OF ARTICLES ON SCHIAVO CASE FROM INCLUSION DAILY

FLORIDA LAW BLOG ON SCHIAVO - recommended

CASE TIMELINE FROM MIAMI.EDU

Those 15 minutes came two weeks later.

Terri Schiavo's feeding tube was removed March 18. We knew it was coming. We'd known it since March 1, when Pinellas County Circuit Judge George Greer, saying he was "no longer comfortable" issuing any more stays in the years-long court battle, announced the date.

But few disability groups were prepared for the right-to-life, right-to-die political circus the nation was forced to watch between that date and Terri Schiavo's death from starvation and dehydration on March 31. One could almost think that the Eastwood protest had been just for practice.

After the first few days -- in which the story was reported as the latest round in the sniping war between conservative Christian right-to-life activists calling for government intervention and progressives and liberals horrified at the assault on a family's right to privacy and individual choice in dying -- the disability rights perspective began to emerge.

The Boston Globe noted it first, with a its story "Rights groups for disabled join in fight", but by and large, most reporters finally came to see that there was a third ring at this circus. A glaring exception was the New York Times, which steadfastly downplayed the disability rights perspective.

Not Dead Yet seemed to be the group taking the lead. And that was appropriate, given that they exist to "oppose public policy that singles out individuals for legalized killing based on their health status." One didn't hear much from any other disability group, although American Association of People with Disabilities head Andy Imparato, interviewed in news stories and on CNN, spoke cogently about the disability rights point of view. (See sidebar.)

Now that the sawdust is being swept up, there are a number of objects lying around that we want to take a look at before we move on:

What WAS the disability rights point of view? Was there one?

That this question can even be asked with seriousness points to the way people -- including disabled people -- understand the concept of a "disability rights movement." Not all African-Americans (formerly called Blacks, and before that, Negroes) supported the civil rights proposals advanced by groups such as the NAACP or, during its day, the Southern Christian Leadership Conference. However there was no doubt in anyone's mind -- certainly not the media's -- that there were groups that spoke for the issues; that collectively were seen to represent the issues of the "civil rights movement." The women's rights movement has its groups as well, as does the gay rights movement.

However, perhaps more than with any other group, people who have disabilities seem unaware of not only any national disability rights groups, but of any central issues that might unite them. Not Dead Yet repeatedly noted that over two dozen national disability groups had in one way or another spoken out over the years about Terri Schiavo's situation with alarm (read groups' statement); and that over a dozen had joined NDY on friend-of-the-court briefs raising disability rights concerns about the case.

But most people -- even most disabled people -- don't know these groups well. To add to the problem, the term "disability group" can be equally applied to a group supportive of rights and to one who rights groups have often seen as part of our national disability problem. Rights groups, charity groups (like the MDA Telethon), groups like the March of Dimes (whose solution to the disability problem is to end disabled lives before they're born), and service and "disease groups" like the MS Society, are all mixed together in the public's mind. Many haven't a clue what their own thinking is on any issue like that we faced with Terri Schiavo. Many were secretly horrified that groups protested Eastwood's movie. "The Brain Injury Association of America, the Christopher Reeve Paralysis Foundation, the Parkinson's Action Network and the ALS Association -- were noticeably silent on the Schiavo case," wrote the Washington Post's Ceci Connolly.

"Cowardice in the face of controversy is not a virtue," said Arthur Caplan, the celeb biothicist Not Dead yet loves to hate, in a MSNBC commentary. "Not Dead Yet spoke up," he noted. "But where were the many other groups who also speak for those with Alzheimer's, Parkinson's, ALS, cancer, AIDS, spinal cord injuries, cystic fibrosis, Huntington's disease? ... Ducking commentary on the Schiavo case should not be an option."

The disability groups who refuse to speak out do so mostly because they seem to still think that disability is, as disability rights scholar Paul Longmore put it, "a private matter between patient and doctor." That belief has done us far more harm than good, yet it is at the heart of why such groups do not speak out on issues that affect the lives of people with disabilities in America.

Another group created the slogan "silence=death". But it might be useful for disability rights groups to now adopt it as their motto, and act accordingly.

Still, a number of national disability rights groups have been trying for years to be seen as purveyors of a national disability rights sensibility. They have a long way to go; but that doesn't mean they should be treated any differently than national rights groups of other rights movements.

Will the events of February and March make the head-in-the-sand groups reconsider their ostrich policy? Maybe. But that reconsideration may take the form of simply trying to find a deeper hole in the sand in which to bury their heads. All the more reason to appreciate groups like Not Dead Yet, AAPD and the Disability Rights Education and Defense Fund, all of whose spokespeople were quoted about the Schiavo case.

Why do crip spokespeople, and individual crips, keep comparing themselves to Terri Schiavo?

Of all the comments we've received at Ragged Edge in recent weeks, this is the most common.

"That's ridiculous. Disabled people aren't like Terri Schiavo."

"Terri Schiavo isn't 'disabled' -- she's brain dead!" a number of emailers practically shouted at us. "Can't you people see the difference?"

"I'm disabled but I'm far from being like Terri Schiavo. If I ever ended up like her, I'd want the plug pulled."

A number of you felt that by "getting in bed with Terri Schiavo," as one put it, we were doing the cause of disability rights grave harm. The Washington Post's Ceci Connolly, in an April 2 story (Schiavo Raised Profile of Disabled) quoted a number of disabled people who felt that way. Particularly telling was Karen Hwang's comment. Hwang, described as a 37-year-old quadriplegic from New Jersey, told Connolly, "We're independent; we're working, living in the community... Just to have somebody say we are vulnerable, that's patronizing and insulting."

People like Hwang continually return to the issue that what we need to be pressing for is better access, an end to job discrimination, access to education, better healthcare access.

We understand why people want to assert a distinction between themselves and Terri Schiavo. Hwang's comment captures its essence well. And on surface -- if what you are comparing are the individual disabilities -- the distinctions are vast. But those who make the comparison aren't basing their comparison on individual disabilities but on societal bigotry.

It's the the "better dead than disabled" mindset these crips are focusing on. And to that mindset, it's disability itself that seems horrific. And as long as that's the case, the kinds of things that functioning crips want will always be considered too much trouble, too expensive, too bothersome to mainstream society.

The only way disability bigotry of the "better dead than disabled" school has any chance of being stamped out -- or even dislodged a bit -- is if the disability rights movement is willing to speak forcefully and publicly about the tie-in between emerging public policies that in the guise of cost containment and choice in dying both promote futile care policies and define feeding tubes as "medical care," and the look-the-other-way stances of progressives and right to lifers alike as Medicaid is cut, healthcare services are cut and anti-access judges are appointed to the federal bench.

Disabled people who see their lives as mainstreamed and OK may not want to acknowledge this, may not want to think about the connect, perhaps hoping that it will go away. They too may want to join the groups playing ostrich. The stretch of sand is going to fill up pretty soon with lots of us digging holes to stick our heads into.

Here are the reasons, as we understand them, that "functioning crips" aligned with groups like Not Dead Yet compared themselves to Terri Schiavo:

1. She was not terminally ill. She was simply a person who would never "recover." Both points, they said, apply also to their lives.

Those are the two related but distinct points that keep getting made by Not Dead Yet members. And the reason they keep bringing them up, it seems, is because they believe that the public doesn't make the distinction. And not making the distinction, they believe, is dangerous for all disabled people.

It is accurate that Terri Schiavo was not terminally ill. Left as she was, with a feeding tube, and with care, she could have lived decades longer. But people ignore that distinction between permanent disability and terminal illness -- Not Dead Yet has been making that point for years. Ignoring it, the group says, has allowed right-to-die groups to press for legal sanction for things like feeding tube removal, and ventilator removal, which allow healthy but seriously disabled people to have their lives ended prematurely -- often to save medical costs.

It is also accurate to say that Terri Schiavo would not have "recovered." A number of times that point was made in news stories, often as the final sentence, used as an explanation as to why Michael Schiavo justified the removal of her feeding tube. The "will not recover" phrase also appeared in stories explaining why the Schindlers pressed so hard to gain guardianship -- that they believed she could receive therapy and perhaps "improve".

When such stories were reported, they also usually contained comments by medical professionals insisting that therapy would be of no use because Terri Schiavo "would not recover." And the phrase also appeared in "context stories" about the issue of people "like" Terri Schiavo who "who not recover" -- how much their care cost taxpayers, how court rulings in recent years had made it easier to turn off ventilators, and so on.

In all these cases, the phrase "will not recover" was used, it seemed to Not Dead Yet protesters, as a kind of shorthand to justify the withdrawal of life-sustaining measures.

And this, perhaps more than any other point, was one we heard made from the Not Dead Yet camp: that people who were seriously disabled with "no hope of recovery" were seen as burdens on society in terms of their costs, their medical care, their needs.

People in the disability rights movement, by and large, are people who have serious disabilities. Virtually none of them will "recover." To them, the phrase -- its constant and patently unexamined use -- signaled an attitude much in evidence throughout society: that people who could not recover would be better off dead. Or that their families, or society, would be better off -- economically, certainly -- if they were dead.

That is a hard message to hear. And even if your disability is not on the surface anything like Terri Schiavo's, even if you can think and speak and write and work, if your disability is so serious that you require a feeding tube or a breathing tube or even a catheter -- and if you're not going to recover -- you fear being treated like Terri Schiavo. Maybe sooner, if you're admitted to the hospital for something unrelated like pneumonia or a tubal ligation and told that you should sign a "do not resuscitate" order -- something a number of our readers have reported happening to them. Maybe later, if your disability progresses to a point where you need more equipment, more assistance. But looming always.

2. A feeding tube is not medical treatment. A story in yesterday's Washington Post ("Feeding Tube Benefit Questioned") noted 1977 research (much reported in recent days) that showed that nursing home residents "who had feeding tubes did not live longer on average than those without them" -- the study, done using elderly "nursing home patients with dementia" seems to be one of those factoids that get dropped into stories willy-nilly when it serves to ground a hot topic. However, what the research doesn't bother to point out but which crips know is that what this primarily shows is that feeding tubes are not "medical treatment" -- they're just an alternative device for delivering nutrition. You can live for years -- decades -- with a feeding tube if you're otherwise healthy. As many crips upset about the "feeding tube debate" are. As Terri Schiavo was.

Yes, Terri Schiavo was healthy. Brain damaged for sure. Unable to "recover," for sure. But healthy. She could have lived a long long time with that feeding tube.

Now maybe that horrifies you -- it horrifies many people who are coming at the issue with the mindset of "I couldn't stand to live like that" -- but that is beside the point. The point is that Terri Schiavo was not unhealthy.She was not "ill." She was most assuredly not "terminally ill." As the Pope is. Pope John Paul II is dying. That is what "terminally ill" is supposed to mean. He will likely be dead when you read this. But he is dying from old age. Terri was not.

It is this distinction that Not Dead Yet crips feel got almost completely lost in the feeding tube discussion, and it is why they latched so quickly onto their "Tube Pride" concept.

That's what this is all about: The feeding tube represents -- stands for -- all sorts of equipment without which severely disabled people would not be alive. And, they say, slowly but surely the presence of that equipment is being used as justification for encouraging a person to end their life. "How, exactly, did a feeding tube get reclassified as 'medical treatment'?" asks Boston Not Dead Yet's John Kelly. (Read Kelly's article.)

"Twelve years ago I made a decision to have a feeding tube placed in my stomach in order to prolong life," wrote David Jayne recently. Jayne, who has had ALS for 17 years, created RespiteMatch.com and lobbies for a change in Medicare's "Homebound Rule."

"I had lost the ability to swallow due to the progression of the disease," he explained.

"Seven years ago last week," he wrote, when he "had one foot in death's door, because my diaphragm muscle was becoming increasingly disabled," he made the decision "contrary to society" -- and contrary to what 95 percent of people with ALS say they want -- to begin using a respirator. It was, he noted, also contrary what he would have wanted before he contracted the disease.

It is extremely easy for a healthy individual to say how they would not live. I am guilty myself. If someone had told me prior to the diagnosis that I would be totally paralyzed, fed by a feeding tube, communicate via computer with a voice synthesizer and tethered to a ventilator, [yet] that I would find more meaning in life and living, I am certain [I would have thought] that person telling me such a tale was insane.

The night before his tracheotomy surgery, he says, "my now ex-wife told me how selfish I was for wanting to live -- that my young children had suffered enough and it would cause them only more pain. It was a sickening sense of abandonment. I have absolutely no doubt if I did not have the ability to communicate my desires the surgery would not have taken place."

This is why the feeding tube issue upsets Not Dead Yet crips so much.

They raise these foregoing points again and again. They focus on those points, that they say kept getting made over and over in the Terri Schiavo discussion. The attitude with which progressive right-to-die advocates viewed the Terri Schiavo situation is an attitude that they say they feel is often applied to their lives as well.

Another way of putting this: It is not they who see Terri Schiavo as being identical to them; it is the public, which, although it says that Terri Schiavo's situation and condition is very different than that of a severely disabled but conscious person, nonetheless continues to hold beliefs about non-recovering severely disabled people which to crips seem very similar. Yes, when pressed, now progressives are making distinctions. But very often, the crips say, the same progressives apply the same kind of thinking toward them -- and they say they see it all around them.

In other words, Terri Schiavo represents something to the public that they believe they also represent. She is an example of why people think the disabled person is better off dead.

Another lesson learned: then is not now; now is not the future.

Something else we heard, coming through the opinion pieces and letters to the editor from crips, and from emails to Ragged Edge, was that people who are not disabled, despite what they think they understand and would want, have no real clue as to what it is like to live as a disabled person. And there is no way they yet that they can know now what they would really want once they became disabled. Once they had time to adjust, that is.

"[W]hen I discovered I was paralysed in almost 90 per cent of my body," wrote Canadian commentator Ed Smith at the height of the Million Dollar Baby controversy, "I pleaded with my wife to have me shot or put down in some merciful fashion. At the time, I didn't even care if it was merciful. That was for the first two days. Now, six years later, I'm rather glad she didn't. Actor Christopher Reeve had a similar experience. So did many people I know who have suffered from catastrophic injury." (Read Smith's commentary from CBC News.)

This point drove many crips' animus against Million Dollar Baby. While it might be true that "Maggie" wanted to end her life -- many newly paralyzed people do; even Christopher Reeve did -- most people get over that suicidal feeling and get on with their lives, said Eastwood's critics. Only paralyzed people are encouraged to act on that suicidal wish -- and given society's blessing and help to speed them to the end, they say. That was Frankie's message, they say. And they hated it.

Thus the general solution to this entire sorry saga -- get a "durable power of attorney for medical decision-making" -- which is what every "expert" on TV has preached in the past few days -- may be a snare and a delusion.

Wellesley College bioethicist Adrienne Asch, one of the few bioethicists to come out of the disability rights movement, was quoted in Ellen Goodman's syndicated column on Thursday. Asch told Goodman, "The typical advance directive or living will does not ask the right questions. It asks what sort of medical intervention we want or don't want. The question that we ought to be asked is what am I experiencing? What will make me feel that I have something to live for? What is enough?"

Asch, who is blind and very conscious of societal attitudes toward disabilities, says that if she wrote the living will form, it would ask people to imagine themselves in a range of scenarios. When would we want our lives prolonged by medicine? In her own advance directive she has written that ''as long as the people who know me believe that I recognize them and can differentiate them from strangers, I want to be alive."

In the morass of news coverage quoting bioethicists and other "medical experts" on the need for advance directives, Asch's analysis stands out as the only one making the clear point that we hear over and over from disability groups: That people don't really know until they are disabled what it is that they might want. A study reported in the recent issue of the Journal of Experimental Psychology found that nondisabled people ("healthy people," the term researchers Jason Riis and colleagues used) consistently "underestimate the self-reported well-being of people with disabilities and serious illnesses." In other words, they consistently believe disabled people are far less happy than they actually are, and imagine life to be far more horrid with a disability than people with disabilities themselves believe it to be. This is not the first study to discover this, but these studies don't seem to have made it into the popular media. (Read study - PDF file)

Thus, it is the unusual person who, never having faced disability or lived with others with happily disabled lives, would sign a directive asking to be kept alive if the future meant ventilator or feeding tube dependency. However, what this means is that many many people now rushing to sign directives will say just that -- and who knows how they might feel had they had a chance to live with disability?

But why should it matter, you say. If I want my life ended before I wake up on a ventilator for the rest of my life, what does it matter to anyone else? If it's my decision?

It matters very much, it seems, to the community of severely disabled people who make up Not Dead Yet. Although Not Dead Yet's Coleman and Drake are insistent that had Schiavo clearly expressed her wishes, so that there was no debate, they would not be involved in the case, and would not have filed several court briefs in the case over the years, they say they know that many people in "guardianship" who can no longer express their views have lives that are seen as expendable.

Because of those people, the slogan "silence=death" has renewed meaning.

In a recent interview, Coleman told a reporter, "[W]hat we are seeing here is the dismantling of the constitutional rights of people in guardianship. No longer will there be the presumption for life.

"The social presumption that [Schiavo] would be better off dead appears to have influenced the decisions in the case," Coleman said. "We feel threatened by this, almost as if there is a cognitive test for personhood under the law."

Both the evangelical right-to-life movement and the progressive right-to-die movement have broader agendas that go beyond Terri Schiavo. In coming months, as the U.S. Supreme Court prepares to rule on the constitutionality of Oregon's assisted-suicide law, both groups will be pushing their agendas with politicians. And there are plenty of politicians who are already loyal to one or the other side.

But if disability rights movement leadership has learned anything from the past few weeks, one of those lessons should be that it needs to now build on its assertion that it is the one group which can most accurately claim to speak for people like Terri Schiavo. Certainly the disability rights movement can produce a focused agenda -- and beyond that, one free of the kind of of political overreaching we all grew thoroughly sick of in the last few weeks.

It is, because of this, the agenda most able to lift our nation beyond the left-right handwringing we seem mired in.

Not Dead Yet has proposed:

-- Meaningful federal civil rights review of contested third-party decisions to withhold treatment in the absence of an advance directive or personally appointed surrogate. Sen. Tom Harkin (D. IA) is already working on a bill providing for this. Movement leaders want Congressional hearings on how to protect people from death based on decisions of guardians or health care providers.

-- State-by-state review of guardianship and health care decisions laws. They want the review conducted by disability rights monitoring groups like the Disability Rights Education and Defense Fund; they want the review to result in reforms to safeguard against what they call "non-voluntary euthanasia."

-- A moratorium on the removal of food and water from people diagnosed in a "persistent vegetative state" or "minimally conscious state" until they have undergone newer diagnostic MRI procedures, which they say must be a requirement. A recent study done by doctors at Columbia Medical Center noted that patients "who are treated as if they are almost completely unaware may in fact hear and register what is going on around them but be unable to respond."

-- Enforcement of the 1999 U.S. Supreme Court Olmstead decision, which ruled that people with disabilities must be allowed to live in the "least restrictive" setting. For well over a decade, the movement has called for changing the Medicaid law to allow people to receive services at home rather than being placed in nursing homes, saving the government millions. It's time for Congress to get serious about passing the Medicaid Community Services and Supports Act.

-- Serious and substantive public discussion about "the difference between end- of-life decisions and decisions to end the lives of disabled people who are not otherwise dying." Disability rights movement experts, they say, must be given equal time in media debates with bioethicists; reporters and editors must begin to turn to disability rights spokespeople as experts rather than relying on doctors, ethicists and spokespersons on the religious right "to pontificate about our lives."

Now if disability rights movement leadership will only press ahead with them.

We can only hope they will.

Posted April 2, 2005, with updates.

Mary Johnson edits Ragged Edge. Read her book, Make Them Go Away: Clint Eastwood, Christopher Reeve and The Case Against Disability Rights.

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