Terri and Haleigh

A year ago today, Terri Schiavo died, having been disconnected from the feeding tube that had kept the woman alive for years. By that time, of course, the bizarre media circus that had engulfed the country for weeks on end was no longer really about Terri Schiavo at all -- if, indeed, it ever had been.

Today marks the anniversary of her death, and the same media would now have it -- over 200 stories strong -- that the "message" or "legacy" of Terri Schiavo is "get a living will." Nothing more. Certainly nothing about disability rights. Despite activists' efforts this time last year. Not a blip of that effort seems to have enlightened anyone.

Late last week, the Massachusetts commission that had been hastily appointed in the wake of the Haleigh Poutre fiasco weighed in: they found mistakes had been made by state agencies and medical professionals. Geez, really? Their rather weak condemnation (yeah; I'd written "limp" condemnation -- me, of all people! -- but Evonne caught it) was restated by MA Gov. Mitt Romney: "Errors in human judgment occur." Oh, OK. The commission's report "isn't as comprehensive as it should be, but running through its recommendations is the message that the state needs to marshal medical expertise to help the Department of Social Services protect children from abuse," says the Boston Globe. Well, yes.

Haleigh Poutre was on the road to Terri Schiavo's fate when she -- gasp! -- woke up.

On March 23, the Associated Press reported that the reason Massachusetts' child welfare agency chief didn't bother to tell the state Supreme Court -- which was weighing removing her life support -- that Poutre might be getting better was "because doctors convinced him she would never recover from a vegetative state."

Department of Social Services Commissioner Harry Spence has been criticized for moving too quickly to try ending Haleigh Poutre's life support.

Spence said Haleigh was showing signs of responsiveness about a week before the Supreme Judicial Court granted permission to remove her life support. But he said Haleigh's doctors said her movements were not a sign she would recover....

"They absolutely affirmed that the chances of her recovery were absolutely zero. There was nothing for us to report to the [state Supreme Court]. There was nothing that had changed."

Only eight days after Haleigh was hospitalized, the MA Social Services Dept. sought permission from a Juvenile Court judge to remove her life support. "It was a quick move because the doctors believed that intrusive care was both inhumane and useless," Spence told the Associated Press's Adam Gorlick.

Dr. Loring Flint, Baystate's senior vice president for medical affairs, would not comment to Gorlick on the case. He cited federal privacy laws: "We cannot and will never comment publicly on the medical treatment received by patients at Baystate Medical Center."

There's been little major media about Poutre outside of Massachusetts, although some of the story has been on CNN and in the Washington Post. The New York Times has done no coverage at all since Haleigh awakened from her coma. (The blogosphere is another story.) An easy judgement would be to say that editors sought to avoid what was criticized as overkill (funny word, that) with Schiavo coverage. More troubling is the possibility that editors felt that any kind of focus on the Poutre reawakening would have "played into the hands of the right-to-lifers." The Boston Herald has pretty consistently been screaming about this case, but then again, the Herald is seen as a rag. The "respectable" media, I think, were so thoroughly embarrassed by even their own Schiavo coverage that they've vowed "never again."

Discussing the public media means, by extension, discussing public response -- the public hasn't gotten all that wound up about Poutre because mostly it hasn't known about Poutre. And I think part of it also has to do with the fact that she did wake up again. Focusing on that would, you know, sort of give credence to all the folks by now labeled as loonies who this time last year kept saying that the concept of a "vegetative state" is vague and in effect means nothing.

But enough already with discussing the public media, and the public. Let's discuss the disability rights movement.

No one would say that disability rights leaders and activists failed to speak out about Terri Schiavo. The opposite is the case. And that effort -- amazingly well executed in terms of sheer activism although perhaps not in terms of media savvy -- may now have backfired. Many in the movement were upset about the movement's public stance, believing it simply cemented in peoples' minds the erroneous connection between disability rights and right-wing causes.

So is seems that this time we were simply gun-shy. Not Dead Yet sent around a press release on Haleigh Poutre, but that was about it.

"Haleigh Poutre's case -- unlike the Schiavo case, where there were some ambiguities, was really made for us," Lisa Blumberg tells me. " It could have been our wedge case." She wonders why activists didn't run with it.

It seems it was almost a perfect case for proving how wrong doctors can be, how easily the "take her off life support" decision is often made. And this time the facts were precisely those that groups like Not Dead Yet could use to make the points the disability rights movement says it wants to make.

Why didn't it happen? I asked this question earlier, too. It was partly burnout, I think; but more than that -- activists were, simply, busy with other stuff. The ADAPT Nashville action was in the works. People had various medical crises, and for others, chronic pain kept them from acting. Those are the sad but true facts of organizing within the disability community. Nobody, it seems, had the energy this time.

Steve Drake of Not Dead Yet has a good statement he frequently trots out: That disabled people are simply "collateral damage" in the broader culture-war fight. That certainly seems to be true with Haleigh Poutre, whom the Rightie blogs have championed. Leftie bloggers then fight the Righties. The battle is then over the same old right-left insults, the issue forgotten altogether.

History has to be lived forwards but can only be understood backwards. Is that how you say that? In hindsight it seems clear that Haleigh Poutre's case, not Terri Schiavo's, was the one the movement should have used to light a fire under this country. But we got burned on the Schiavo case, and I think movement folks are still finding it almost impossible to dig out from under the ashes.

March 31, 2006 | Email this story


Comments (newest comments at bottom)

I wonder if it isn't possible that the reason that nothing has been done with the Poutre case was because there was fear, at least from the media outlets maybe more so than the disability commmunity, that they would end up with a "yeah, but this is different, she woke up and stuff" response that most of white america would have undoubtedly given to any coverage of this case. I find that reason a sad one, but I still wonder albeit.

Posted by: matt on March 31, 2006 12:10 PM

The main problem with DRM [disability rights movement] response to these matters is that we are up against that unshakeable (or at least to-date-unshaken) mantra "better dead than disabled" and Harriet can be a media hit but still only get marks for being remarkable: the exception that proves the rule.

TABs are, insofar as we can have any, our dangerous enemies because they clearly wouldn't object to having a board decide when the last month (the costliest part of Medicare) starts and just pleasantly off us at that time.


Posted by: William Loughborough on March 31, 2006 12:29 PM

Mary, I can't resist: "Their rather limp condemnation" -- "limp" used to mean "bad"? ; )

I haven't seen any information on Haleigh's current "condition", but I worry that if her recovery is less than optimal after rehabilitation, i.e. she has any impairment of speech or mobility (requisites of worth for right-to-die proponents: walking and talking), that people who see the withdrawal of life-sustaining treatment as "merciful" will take her disability as justification. ("She'll never be the same again -- probably best to just have let nature take its course.")

Part of the argument used by people who wanted Terri Schiavo dead was that there was little chance she would "recover" -- meaning return to her previous, non-disabled condition, return to "normal". While the fact that Haleigh is regaining consciousness certainly makes a good case in indicating that the physicians in question made rash and wrong decisions, the monster that causes people to judge what is "normal" and therefore worthy of life still rears its many heads.

A lot of people could have argued -- did argue -- that Terry Schiavo appeared to be alert, awake, and responsive despite reports of brain activity to the contrary. But whether or not she was conscious was not really the issue. What governed many individuals' judgment was their horror at seeing a woman who did not speak, walk, or feed herself with her own hands -- and their hasty conclusions that they would not, could not live "like that".

Chances are that Haleigh's injuries will leave her with some degree of disability, and that degree will be the determining factor in many people's perceptions of whether or not her life was worth saving.

That is, for the people who even hear about her -- because it's quite true that her case has gotten very little coverage. I first got my information from Ragged Edge, and thought I must have been living in a hole for the months preceding, but as it turns out the attention paid to Haleigh has been little more than a blip on the screen. The public certainly is burned out -- and still has a very short memory.

Posted by: Evonne Acevedo on March 31, 2006 03:32 PM

The issues were exactly the same in both cases. But the right-to-life people weren't as visible in the Poutre case as in the Schiavo case, and therefore there wasn't the kneejerk reaction on the so-called left. And because there wasn't, the media chose basically to ignore it.

The Schindlers made two tactical errors in the Schiavo case. They were outlawyered early, which meant there was no way any appeal was ever going to benefit them or Terri, and they tended to cast their lot with the right-to-life groups, and that hurt them.

Posted by: Susan Nunes on March 31, 2006 07:26 PM

Evonne writes,

Mary, I can't resist: "Their rather limp condemnation" -- "limp" used to mean "bad"? ; )

Aaarrgggghhhh -- did I do that? Aarrgh -- yes I did! Oh wow. Eight hundred lashes with a wet noodle! I'm changing it RIGHT NOW. To "weak."

Mea culpa, mea culpa, mea culpa, ad infinitum....

Good catch, though.

Posted by: Mary Johnson on April 1, 2006 10:59 AM

There are huge logistical contrasts between Poutre and Schiavo, in terms of the window of opportunity for response. Schiavo has been collapsed in memory into the March 2005 TV blitz for most people, but it stretched back long before. When I first learned of the case, we were involved in Wendland, a very clear case (no dispute that there was no PVS, no clear and convincing evidence of his wishes). We were warned about the ineffective initial lawyering in the Schiavo case, which had lost these issues, so we stood back. But then the appellate court re-opened the issues of whether she was in PVS and what her wishes would be, and set them for trial. At that point, Stephen remembered that a good writer, Rus Cooper-Dowda, lived there. We got a donation to support her transit to the trial every day, and she wrote compelling articles about what she saw. This lead to our amicus briefs in the subsequent appeals. The visible involvement of pro-life people did not begin until the first time the feeding tube was removed in late 2003. I went to Florida that week with another NDY Board member, but Florida disability groups did not get involved, just a couple lonely advocates.

This year, NDY is considering non-violent protests at two bioethics conferences. The Poutre case would be part of that, in terms of leaflets and press materials. We think her case is the tip of the iceberg, and that most like Haleigh die before they get a chance to recover. Recent articles coming from the bioethics community indicate that they view us as major opposition even as they seek to marginalize us in public discourse. We're glad they see us as opponents, but we have not been loud enough to save many lives. We will soon announce these conferences, and hope that concerned disability activists will support the effort.

Posted by: Diane Coleman on April 3, 2006 04:03 PM

It's cool, Mary. Of course you meant "limp" as in flaccid, lacking reinforcement. (And somebody somewhere, I'm sure, could take issue with "weak".) Hell, I misspelled "Terri" in my fourth paragraph (I just noticed and it's killing me!!) -- I suppose even word people make mistakes. Still love you.

Posted by: Evonne on April 3, 2006 04:51 PM

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