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Read Liberals and Disability Rights: Why Don't they 'Get It'? |
The belief that it is better for people to be dead than disabled is endemic in society at all times among people of all political persuasions. However, it is only when the times are reactionary that the concept becomes a rallying point for certain liberals. Déjà Vu
Conventional liberals need to grow up and realize that we are all in this together. Disability issues are part of the human rights agenda.
TWENTY YEARS AGO, it was a terrible time in the country. Reagan was president. He was pursuing a militaristic foreign policy and cutting social programs. There was little concern for individual rights. Disability rights activists were trying to join forces with other progressives to push the country in a better direction. Then the Baby Doe controversy arose. One could not open a newspaper without seeing an editorial or article by someone who we thought was our ally going on about how miserable, stunted and burdensome the lives of some of the "handicapped" inevitably were. The thrust of these pieces tended to be that the withholding of food and basic medical care from a disabled child should be a choice a family could make on "quality of life" grounds, under the influence of doctors and without restrictions by the government. Almost the only liberal commentator cautioning against the rush to legitimize such decisions was Nat Hentoff writing in The Village Voice. Some of his colleagues thought he was a heretic. Today it is a terrible time in the country. Bush the Younger is president. He is pursuing a militaristic foreign policy and cutting social programs. There is no concern for individual rights. Disability rights activists have been trying to join forces with other progressives to push the country in a better direction. A few months ago, though, the controversy over Terri Shiavo's fate entered a more public phase. One could not open a newspaper without seeing an editorial or article that discusses the miserable lives the profoundly impaired inevitably have. The conclusion of these pieces was that the withholding of food and basic medical care from a nonverbal loved one should be a choice a family can make on "quality of life" grounds, under the influence of doctors and without restrictions by the government. Almost the only liberal commentator cautioning against the rush to legitimize such decisions was Nat Hentoff writing in The Village Voice. He thinks the barriers to killing are fast coming down. Some of his colleagues think he is a heretic. It's déjà vu, sad and grim. Unlike 1984, though, we now have Not Dead Yet and they have saved lives, but the group is not acknowledged by most of the media yet. Perhaps it is because Not Dead Yet, grassroot- and civil rights-oriented as it is, throws a monkey wrench into the forces for choice vs. the forces for control analysis. The media seems to have figured out that Terri Shiavo may not be exactly, totally comatose and may not be exactly, totally terminally ill (or at least, wasn't until six days or starvation and dehydration) but they aren't sure what she is. Is she in a vegetative state, minimally comatose, minimally conscious, severely brain damaged, locked in her body or just living without dignity? Is she suffering terribly or is she a shell that feels nothing? Never mind, it makes no difference. As Boston Globe writer Carey Goldberg was told by a doctor, "persistent vegetative state patients and those the next step up, the severely handicapped, often have clear responses to stimuli but, he said -- and he didn't intend to be insulting... even his dog has an emotional response. Even his son's goldfish moves when you tap on the glass." The writer failed to pick up that it would be illegal for the doctor to starve his dog, although he could probably have his way with the goldfish. Instead, she indicated that the doctor had dispelled her concerns. "That brought it home!" she wrote. That brought it home to me, too. Everyone who has more than a slight disability has at one time or other been called "severely handicapped" by someone. I know little about the conditions under which Terri Shiavo has lived. I don't know who she is. My hunch is that what she wants is not death but her mother. I really don't know though. What is chilling is that people who otherwise oppose bigotry and prejudice seem almost pathologically unwilling to examine their eagerness to have Ms. Shiavo gone. I am disturbed, too, that mainstream feminists who have for over 150 years maintained that wives are not their husbands' chattel are content to have the choice of estranged husband prevail over the pleas of parents who visit. Their reaction to the case seems very simplistic, very kneejerk. During the Clinton era, Jack Kevorkian was tried and convicted for his crimes. For a time, he had enjoyed a certain mystique in the press. But then he broke the rules. With television cameras whirring, he exhibited a little too much glee when administering his lethal treatment to Thomas Youk ("Well, here we go, Tom!"). In the end, he had few defenders. If the trial had occurred during the present administration, he probably would have still been convicted -- but the reaction might well have been different, with concern being raised that it was part of a massive assault on everyone's right to die. Conversely, it is possible that, with the exception of medical groups, there might have been little opposition to regulations to protect infants with disabilities in hospitals if the regulations had been carefully crafted by the Carter Administration rather than heavy handedly by the Reagan Administration. The belief that it is better for people to be dead than disabled is endemic in society at all times among people of all political persuasions. However, it is only when the times are reactionary that the concept becomes a rallying point for certain liberals. I get very afraid when the right wing is in power in Washington -- not just because of what the right wing does but also because of some of the positions liberals take when they think they are opposing the right wing. It is as if we are suddenly hurled to the wrong side of the cultural divide. Conventional liberals need to grow up and realize that we are all in this together. Disability issues including issues related to the values of our lives are part of the human rights agenda. This does not change if there's a reactionary in the White House or if the budget is being slashed or if the abortion foes seem to be riding high. What I think may happen within the next several month is this: A child will be born in the Midwest or, better yet, Florida. He or she will have Down syndrome -- or perhaps spina bifida or "severe" cerebral palsy. Possibly he or she will also have some other "defect" -- let's say, a cleft palate. Doctors will deliver a negative assessment to bewildered post-partum parents who will accept the recommendation that the baby be snuffed out.
Someone will blow the whistle and the government will make a lackadaisical attempt to save the infant's life. This will inflame the right-to-die advocates and the believers in parental autonomy. Medical ethicists will make profound remarks about the hard choices created by advances in medicine. The child will die, as the child referred to as Baby Doe did -- or will become more disabled than necessary, like the now-forgotten and much-maligned "Baby Jane Doe". That will fix Bush, his brother and all the righty lifies. Just you wait. Meanwhile, Bush may grab a second term. I hope I'm wrong on both counts. Posted April 15, 2004 WHAT DO YOU THINK of what you've just read? Click to tell us.
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