Edge-centric

I'm just going to quote a few things from the story (entire story here -- Girl with damage to brain spends first day in rehab - The Boston Globe) -- things that caught my attention -- things that always catch my attention when they are in stories.

The first thing is in the paragraph above. Wen writes that the injuries require "round-the-clock care." That phrase "round the clock care" is one that is often used as a cliche, without thinking, by both reporters and I suppose the medical folks that they talk to. It nearly always could be found in descriptions of Christopher Reeve. In many cases no doubt it is true; I do not question its use in Wen's story. But I do believe it -- and the idea behind it -- is also found when people are thought to be too expensive to maintain. (Wen tells us that this "rehab" place costs $1,500 a day as compared to the $4,000 a day cost of the hospital she'd been in.) It's most often used as an explanation as to why someone is put into a nursing home, rather than living on their own with personal assistants. "Round the clock care," y'know. As though that should be explanation enough; an end of the matter. Few in society even question why needing "round the clock care" should mean "nursing home." That's the problem I have with the phrase.

Wen's story tells us that

The 11-year-old Westfield girl arrived at Franciscan Hospital for Children on Thursday, about a week after she surprised doctors by breathing on her own and showing increased responsiveness. On Tuesday, the state's top child-protection official ... said he noticed her picking up toys on command and tracking his movement with her eyes.

Nonetheless, I suspect that there are still folks who see this case as another in the Terri Schiavo genre -- who think the right-to-lifers are making all this up about "responsiveness." Later in the story, Wen reports that " Some neurologists who are not directly involved in her care say that it appears she might be moving from a vegetative state to a minimally conscious state." Gotta have diagnosis, y'know; a label. Bioethicists are also very skilled at assigning those labels.

At the Franciscan rehabilitation unit, patients typically stay for about two months and attempt to improve enough so they can return home, sometimes learning to do such basic things as swallowing. More than half of the patients are attached to feeding tubes, and roughly half breathe with the help of ventilators or tubes attached to their trachea.

Haleigh still breathes through a tube attached to her trachea and is fed through a tube.

Doctors said they generally know if a patient is going to make significant strides or will stagnate after six months. Of the patients who do not progress, many go to a nursing home.

The three paragraphs above sum up the entire case for the independent living movement -- the movement that still hasn't made much of a dent in people's thinking outside the confines of disability rights circles. If you can't "progress" then you go to a nursing home." And Wen didn't write -- but she could have -- "end of story:"

''To be here, you have to have some rehabilitation potential," said Dr. Virginia Kharasch, a pediatric pulmonary specialist.

It's also useful to note that none of the three people MA Gov. Mitch Rommey appointed to be on the panel to investigate how the state had handled the case since last fall has anything to do with either disability rights or independent lving. One is the president of a national children's advocacy group and the other two are doctors.

And certainly it would never have occurred to anyone to invite onto the panel anyone who had ever actually suffered brain damage or been before in a "vegetative state." That idea would be ludicrous.

Patricia Wen can be reached at wen@globe.com.