Edge-centric

We want to know what you think: Should national disability groups be doing something? What should they be doing ? Should they be speaking out on the Poutre case? Issuing public statements? Which groups should be doing this? And when?

Should the disability community be leading the country in discussing why Haleigh Poutre got the "right to die" and now evidently has the "right to live" again? Or, as Blumberg writes, should we just "let the bioethicists sort it all out"?

Blumberg is actually addressing that question, she says, to liberals in this country. I think the question's a good one for both liberals and the disability community. I want to think both groups share the same values. Maybe that's naive.

Blumberg told me, when we were editing her story, that columnist Ellen Goodman had made the point in a column about Terri Schiavo last spring that to call Schiavo "disabled" ("handicapped") "degrades the meaning of the term" -- this is Blumberg here recalling Goodman; it may not be Goodman's exact words. But there was, Blumberg reminded me, almost a consensus among liberal commentators that Schiavo was not "disabled." Not really. She was "a vegetable."

And because of all of the "see? she had no brain!" stuff that was said in the wake of the Schiavo autopsy, many of us feel shamed into silence.

OK, so now we have Poutre. She was a vegetable and now maybe -- she's not?

The conservatives -- the "right to lifers" -- have taken up the Poutre case. The conservative blogs are all over it.

From the progressive side of the blogosphere? Silence -- at least, as far as I've seen. The rest of us are being "sensible." Not saying the kinds of things we said about Terri Schiavo.

Leftie bloggers' combatant in the Life Support Shouting Wars was Tirhas Habtegiris. She was conscious.

If they're conscious, they should live? Is that what is coming to be said by default in this country? It's hard to tell. We've heard nothing yet from Ellen Goodman, who is a Globe columnist -- although the Poutre case has pretty much been the Globe's story (actually, reporter Patricia Wen's) since November.

It sort of seems to me that progressives have gotten themselves into a box with that mantra of the "right to die" being all about "privacy" and "choice" -- and little else. Now they really can't talk about Poutre without looking like right-to-lifers. To me, that bespeaks at a mimimum a failure of imagination on the part of us who want to call ourselves progressives. It also seems to me to signal an utter lack of awareness -- or disregard -- for things the disability rights movement has said in the past about cases like these.

Haleigh Poutre and Tirhras Habtegiris seem to me to function in the public mind not so much as real people as pawns in the culture wars. Steve Drake of Not Dead Yet has, I think, a good way of putting it: He says neither the left nor the right truly claims disability issues as their own. Both "are really just invested in their broader culture war -- with neither side seeing us as part of the culture they're defending. We're simply collateral damage."

On Dec. 6, The New York Times's Pam Belluck, in a 1,142-word story, reported on the Poutre case (Custody and Abuse Cases Swirl Around a Troubled Girl on Life Support ). On Jan. 18, the Times ran Belluck's550-word story on the MA Supreme Court's ruling OKing removal of life support (Boston Court Approves Ending Life Support for Girl in Coma ). News about reports that the Poutre girl was responding came in the 4th of five 100-word articles in the Times's Jan. 19 National Briefs column (MASSACHUSETTS: COMATOSE GIRL SHOWS RESPONSES): "...agency officials said the comatose girl's condition might have changed. 'She's having some responses,' a department spokeswoman, Denise Monteiro, said of the girl, Haleigh Poutre. Ms. Monteiro said doctors would perform more tests today 'to see what the movements mean.' "

Yesterday I was flipping through The Times and came upon the article about Sgt. Harold Gray. Because I knew Ragged Edge would have Blumberg's article online today, I realized I was reading the story with the Poutre case in mind. Here are some excerpts from that Jan. 22 story:

Even though he is alive, Harold Gray's relatives talk about him in the past tense.

On Dec. 26, 2004, Sgt. Gray, then 34, a member of the 133rd Engineer Battalion of the Maine Army National Guard, was driving in a convoy outside Mosul, Iraq, when a bomb blew up underneath his truck.

He has been in hospitals ever since. Blind and severely brain damaged, he cannot speak, move voluntarily or communicate. He is fed through a tube implanted in his stomach. Though he appears unaware of his surroundings, family members say they believe he hears their voices when they visit. But his medical records describe his condition as a "persistent neurovegetative state" from which he is unlikely to emerge.

"They don't think he has any chance for recovery," said [his wife] Laurie Gray....

"I've accepted this is the way it could be, but I also haven't given up hope," Ms. Gray said. "You never know, there could be a miracle."...

His former wife, Jessica, said: "He always used to say he wouldn't want to live not knowing anything. If he couldn't function, if he couldn't recognize his kids, he wouldn't want to live."

Laurie Gray said removing her husband's feeding tube was something she could never do. But she has signed a do-not-resuscitate order...