Edge-centric

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.