Today, I read a story about a little girl who needs a kidney transplant, and the doctor who said she couldn’t have one because she is mentally retarded – she has Down syndrome – and her quality of life wasn’t worth saving. Here is the original story:
I am horrified that now, in 2012, we can still face this kind of prejudice, this kind of hatred – and make no mistake, this is hatred. This is the belief that unless someone is experiencing the kind of quality of life society understands to be “normal,” he or she is not entitled to the same rights, the same medical treatment, the same respect as the normal people. This is the kind of thinking that leads to abortion of imperfect babies, and in its extremity, the abandoning of babies on mountain slopes if they are damaged, as was done in ancient Greece. No one now is, of course, saying we should abandon our children with disabilities on mountaintops, but consider Peter Singer.
Peter Singer is a philosopher from Australia who specializes in ethics. There was a huge uproar back in 1989, the year Ian was born, when he was criticized for his stated beliefs that a baby born with a disability has a life that is so blighted as to be unworthy of living. He said that such a baby’s parents would have the right to let the child die – to have medical procedures stopped, even nourishment refused. This is true – he said these things. There were protests held wherever he appeared to speak. Disability advocates published papers and letters to the editor decrying Singer’s beliefs. I was among those who felt he had no right to recommend such a frightening premise, especially once I was holding my own child in my arms. What I didn’t know at the time was that he also said that once such a child is born, once the decision is made to keep that child alive, everything possible should be done to improve the quality of this child’s life. I don’t know if that would have mitigated my fear of this man, and recently I learned that he has also argued in favor of rationing health care, which is a dangerous slope to get near. It's funny how I once thought his words should be silenced, while now I wish he would talk to the transplant doctor.
It is an awesome power we allow our medical professionals to possess. And I don’t mean awesome in its teenaged sense – this is awesome as in “inspiring awe,” and what is awe? It is an overwhelming feeling of reverence, admiration, and fear. This is the awesome to which I refer. We have given the power to decide life or death to our doctors and, especially, to our bean-counting insurance companies.
I don’t know what I would do if Ian faced a life-threatening illness and was refused treatment because of his disability. The anger and distress I am experiencing now just thinking about these parents and their daughter is overpowering, and this is simply on their behalf. Thank the internet and its millions of tendrils that this story is making its way across vast numbers of people who are doing whatever they can to overturn this doctor’s judgment about this child’s life.
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