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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.


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.

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.


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.

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.

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.

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.

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.

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