By Lisa Blumberg

Where do we draw the line?

In the Terry Schiavo case, disability rights activist were essentially told by columnists across the country to mind their own business. We were told that Ms. Schiavo was a "vegetable" -- that calling her "a person with a disability" was an affectation, ridiculous. Nobody was suggesting offing real disabled people, they insisted. Her nearest and dearest was supposedly carrying out her wishes when he stopped the flow of food and water to her.

One would have thought from reading these editorials that there was a widespread consensus against withholding care based on disability.

Haleigh Poutre is an 11-year-old western Massachusetts girl, allegedly beaten into a coma last fall by her adoptive stepfather. The MA Department of Social Services, which had ignored previous reports of abuse of Haleigh, assumed custody of the girl -- and within three weeks of her injury rushed into court asking for the power not only to remove her respirator but to stop "nutrition and hydration" -- in short, remove her feeding tube.

"Haleigh Poutre, 11, clings to life in a hospital bed, her body sustained by breathing machines and feeding tubes," reported The Boston Globe's Patricia Wen on Nov. 6. "The state, which now has legal custody of the child, wants to terminate her life support, citing medical tests that show she will never recover."

DSS said they were asking permission to remove said feeding tube on the advice of doctors, DSS officials not being doctors themselves. They cited her "right to die with dignity."

The state Department of Social Services, which took custody of Haleigh two months ago, is asking the courts to terminate her life-support systems, basing its appeal on doctors' opinions that she will not recover from her vegetative state. "...

[C]ourt records refer to Haleigh as being ''virtually brain dead." As recently as last week, relatives who visited her said they saw a ventilator and feeding tube attached to her. (The Boston Globe, Nov. 6, 2005 )

Diane Coleman of Not Dead Yet has a phrase for what DSS was asking for. They were asking for carte blanche.

DSS had "also considered the desire of some of the girl's relatives, including Haleigh's maternal grandmother, Sandi Sudyka, and her biological mother, Allison Avrett, that she be allowed to die," Wen reported. '''Let's put her to rest," Sudyka said. ''I don't want her to live that way.'"

State social service officials declined to confirm how they want to terminate Haleigh's life support -- by removing her feeding tubes, turning off her ventilator, or both.

As Haleigh's guardian, the state is paying for her round-the-clock medical care, state authorities said. Officials at Baystate Medical Center declined to comment on costs for any particular patient, but said a typical patient in the pediatric intensive care unit incurs charges of about $4,000 day. (The Boston Globe, Nov. 6, 2005 )

The process got slowed down a bit when Haleigh's alleged abuser sought to stop DSS's action. The Massachusetts Supreme Court properly ruled that he should have no rights over Haleigh. However, the court then gave DSS the right to remove "life support" -- including her feeding tube. Again, to coin a phrase, they gave the state agency carte blanche.

On Jan. 17, the state's Supreme Judicial Court ruled that "life-support systems" could be removed,

saying that the child, who has been in a vegetative state since an alleged beating by her adoptive mother and stepfather, should be able to ''pass away with dignity." ...

In language that showed their belief that Haleigh's life is already over, the court referred to a larger message that can be taken from her brief life.

''[Her] memory will remind us, time and again, that we, as a society, need to do more to aid children who are neglected and abused, and thereby denied the care and nurturing they so desperately want and need," the opinion said. ''If [her] case helps other children to escape their misery, her short life will not have been in vain."

... According to court records, the 11-year-old girl is "virtually brain dead" and in an "irreversible coma," suggesting she has suffered more brain damage than Schiavo. She has yet to show she can breathe on her own for extended periods of time. She has severe injury to her brain stem, which controls the body's vital functions. Doctors predict she will not live for more than a couple of months longer, even if she remains attached to a feeding tube. ( From "The Boston Globe, Jan. 18, 2006)

Now we learn that, just prior to the court ruling, Haleigh started to improve and was breathing on her own.

One would think that a state agency in Massachusetts, the cradle of democracy, would want the court to have every possible scrap of information in order that the court could do its best for Haleigh. Maybe not. Haleigh's biological mother had visited the girl the week before the court ruling, The Globe reported, and "observed Haleigh's hand moving, which gave her new hope that Haleigh's condition might have changed.

But Avrett said she was later convinced by DSS officials and doctors that those movements were involuntary and not signs of revived brain function.

''I agree with the removal of life support, but it [the court ruling] doesn't make it any easier," she said.

The court issued its ruling. Almost simultaneously, the Globe reported that Haleigh had been seen by her biological mother "with opened eyes and seemingly responding to some commands."

It was reported that she was emerging from her "vegetative state":

A day after the state's highest court ruled that the Department of Social Services could withdraw life support from a brain-damaged girl, the agency said yesterday that Haleigh Poutre might be emerging from her vegetative state. ...

''There has been a change in her condition," said a DSS spokeswoman, Denise Monteiro. ''The vegetative state may not be a total vegetative state."

...Haleigh is breathing on her own, without the ventilator she has depended on for four months. ... [D]octors at Baystate Medical Center in Springfield elicited responses from Haleigh during tests performed yesterday....

Last fall, doctors described Haleigh as being in a persistent vegetative state and ''virtually brain dead," district court records said. Physicians said her brain stem was severely injured, leaving her unable to think or feel and in an ''irreversible coma," according to an opinion Tuesday by the Supreme Judicial Court. (from Girl in vegetative state reported to improve: DSS says it has no plan to remove feeding tube," The Boston Globe, Jan. 19, 2006)

Now DSS says it has no "immediate" plans to deny her nutrition. Officials now say that they will consult bioethicists and other experts about the "complex medical and ethical issues" raised by her case.

State Department of Social Services Commissioner Harry Spence said yesterday that he plans to solicit outside expertise to help his agency sort out the complex medical and ethical issues around the fate of Haleigh Poutre.

''We would like to draw in additional medical input,"...( from "DSS to seek outside expertise in Haleigh case," The Boston Globe, Jan. 21, 2006)

Still, DSS has not asked that the court order giving the agency life-and-death power over Haleigh be rescinded. They do not say that she is a child who, regardless of whether she will have residual disabilities or not, has the same right to access to food and water as any other child in state custody.

They have not said that they will belatedly assume their responsibility to preserve her life -- nor have they indicated that they will put finding Haleigh a new family on the fast track.

There is a feeling in Massachusetts that DSS, by pressing so quickly for the "right to die," jumped the gun, so to speak. DSS may even get its wrist slapped. "Several Beacon Hill lawmakers say they will summon Social Services Commissioner Harry Spence to explain the department's oversight of Haleigh Poutre," reported the Globe's Michael Levenson on Jan. 22. However, it will be an uphill fight to secure any policy changes.

"Several lawmakers said they have confidence in Spence's leadership, reported the Globe's Patricia Wen on Jan. 22. . '' 'Commissioner Spence is one of the most sincere commissioners I've ever met,' said Representative Marie J. Parente, a Milford Democrat."

The idea that the state should not have the power to selectively starve and dehydrate people may be proved controversial after all.

This is because the issue is not really about personal autonomy, as last year's Schiavo editorials would have us believe. No; the issue really comes down to differences of opinion over whether this or that particular life is "worth saving."

For some, the answer is "not if the person can't talk or feed himself" (you know, if the person ends up a little like Stephen Hawking). For others, the answer is, "no, not if the person can't be expected to make a "full recovery" (you know, return to "normal").

... most families eventually agonize over how much progress is enough to keep life support going, said Dr. Michael Grodin, director of biomedical ethics at Boston University. Is it enough that the patient is breathing on his or her own and showing normal sleep-wake cycles, even if there is no prospect of being able to talk or feed themselves? Or does the patient need to substantially return to normal?...

If Haleigh suffered severe strokes on both sides of her brain, as indicated in medical testimony in court records, she may have the potential for only a limited recovery of consciousness at best...( from "DSS to seek outside expertise in Haleigh case," The Boston Globe, Jan. 21, 2006)

There certainly seems to be a lot of latitude here -- for families, for the state when it becomes "family."

Diane Coleman has a phrase for this as well: The "dismantling of rights."

My question for my fellow liberals: exactly at what point would you join disability activists in drawing the line? Or do you just want to let the bioethicists sort it all out?

Should national disability groups take action on Haleigh Poutre's behalf? Why or why not? Which groups should be doing this? What actions should they take? Should they issue public statements? What should they say and do? Please add your thoughts in our comments section, below.

Lisa Blumberg is a corporate lawyer and freelance writer. Read her 2004 article for Ragged Edge, Déjà Vu.