MINNEAPOLIS — Minneapolis. -- Halfway through the conference I began t wonder what I would feel if I had been Ryan Amerman's mother. If my unconscious child had been picked up every day for eight years and taken to a school for the mentally disabled.
If my child had been in a persistent vegetative state, wholly unable to experience life, and yet had been taken on field trips, had come home with a Mother's Day card or with a report that he had bowled 103. If I had been told repeatedly that this child was "improving."
I doubt that I could have stood before an audience even a year after it was all over and said with so little bitterness and such simplicity, "It drove me crazy."
Ryan's mother, Linda Belanger, was one of the people telling stories at an unusual family reunion. The Center for Biomedical Ethics here assembled families whose names appear on any bioethical roster for a conference called "Managing Mortality."
Karen Ann Quinlan's family was here, so was Nancy Cruzan's and Christine Busalacchi's. They came to describe their own experiences and listen to each other.
But of all the stories told here perhaps the most searing and certainly the most common had to do with children or spouses in a persistent vegetative state. They were stories about people awake but unaware, permanently unconscious and utterly unable to experience life. They were about the people you point to when you say, "Don't let me live like that."
Ryan was not, is not, the only person held in such a macabre twilight zone. It took Linda Belanger 11 years to find out what the doctors knew and didn't tell her -- that Ryan was diagnosed PVS, persistent vegetative state -- and to stop his treatment and let him die.
Nor was Ryan the only captive of a delusion that treats such patients as disabled. Pete Busalacchi told the conference about the therapist who taught his daughter to play the tambourine. The therapist put the tambourine in the hand of his irreversibly comatose child and shook her arm.
What is striking is how the language of "disability" is being applied to those in vegetative states. It's being used in courtrooms against families who want to stop treatment of the unconscious and let them die. Advocates such as James Bopp of the National Legal Center for the Medically Dependent and Disabled accuse families like Ryan's and Christine's of "discounting, devaluing life based on disability."
Laws meant to protect jobs and provide training for the disabled are being applied in bizarre ways to provide a number of comatose patients with therapy and school. Trips to the bowling alley. Tambourines.
There is something not only deceptive in this, but cruel. To describe a PVS patient as disabled is, as ethicist George Annas put it, "to describe a Minnesota blizzard as precipitation." To use funds intended for those who can benefit on those who cannot is somewhere between perverse and immoral.
Dr. Ronald Cranford, a neurologist and a force behind the conference on ethics, has verified at least three PVS children in Minnesota alone who are in school. There are other cases in which parents are suing to stop nourishment while a state is paying for individual educational plans.
More important, there are at least 14,000 PVS patients in this country. Few live a long time, fewer still are so bizarrely overtreated. But some who were too young or unaware to have left an advance directive about their fate are being placed on the continuum of "disability" by those who want to maintain them indefinitely. Even against the will of their families.
"The problem," says Dr. Cranford, "is that ethically and psychologically we just don't want to make any value judgments. Doctors don't want to start drawing lines at all. No bureaucrat wants to say, 'Oh you're right. They aren't disabled. They are beyond disability.' "
I understand this caution, especially among advocates for the disabled. If we take PVS patients out from under the protective umbrella of "disability," they fear we will take out the profoundly retarded next. If we say that it's useless to treat PVS, who will become useless next?
There are indeed slippery slopes. But patients in a persistent vegetative state are not people with a reduced quality of life. They are people with no quality of life. We have to look squarely at this reality.
To apply the language of disability to permanently unconscious people is not to strengthen but to cheapen that language, and that cause. It makes a mockery of our best intentions. Just as surely as the image of a comatose boy at a bowling alley.
Ellen Goodman is a syndicated columnist.