I can be remarkably stupid. Once upon a time I thought bioethicists and disability rights advocates would form or could form a powerful alliance. Boy, was I wrong! The reality is a giant divide, a gulf as wide and deep as the Grand Canyon, separates bioethicists and disability rights activists. This divide and much grumbling is well known in the disability rights community. Some even think bioethicists spend their time thinking of new and creative ways to either kill or at least subvert the civil rights of people with disabilities. I for one never subscribed to this line of thought. I thought people like Peter Singer gave the field a bad name and that in reality most people in bioethics were drawn to the impossible conundrums that arise in the medical sciences. On the other end of this divide, bioethicists work in a narrow field and garner less respect than one would expect. While bioethicists may work and be associated with prestigious institutions they rely on limited resources when compared to other fields in the medical sciences. Bioethicists also tend to be insular and one field they struggle to deal with is disability studies. Simply put, bioethicists do not like disability activists and some, certainly not all, do not respect disability studies. For the better part of this year I have thought that there must be a way to broach the divide between disability activists and bioethicists. I have thought long and hard on getting leaders in both fields locked into a room over the course of a day and work out their differences. In my imagination I would act as a mediator, getting both groups to be mutually respectful and work together to protect and advocate for the civi rights of people with a disability. This is a great idea but I fear wishful thinking.
I have reluctantly concluded getting bioethicists and disability advocates together might be pure folly. Part of the problem is a great deal of animosity exists in the disability community and among disability activists. Simply put, bioethicists for better or worse are widely disliked. A cursory glance at disability history reveals a disturbing legacy within bioethics and the medical science.--Eugenics and forced as well as coerced institutionalization spring to mind. This history is not taught nor acknowledged. Indeed, many in the medical sciences would like to sweep such historical events under the carpet while disability activists and scholars seek to bring such past abuses to light. The result is an inherent tension between the two groups that is exasperated by certain issues. Here I refer to assisted suicide, prenatal testing, and neonatal treatment. Since I have been stuck in bed I have read about these three issues at great length. Some of what I read is deeply distressing. One article in particular has led me to conclude it may not be possible to get bioethicists and disability activists together. The article in question, "A Life Worth Giving? The Threshold for Permissible Withdrawal of Life Support From Disabled Born Infants" published by the American Journal of Bioethics by Dominic Wilkinson is troubling. In no way do I call into question Wilkinson's motives. He is a specialist in new born intensive care and medical ethics. I do not envy his position--on a regular basis he decides if a newborn infant will live or die. I am sure such decisions are not made lightly and involve a great deal of angst for doctors and parents. However, I do call into question his assertion that "it is justifiable in some circumstances for parents and doctors to decide to allow infants to die even though the infant's life would be worth living". Wilkinson calls for a "threshold view treatment"--that is treatment may be withdrawn if the infants "well-being is below a threshold that is close to, but above the zero-point of well-being". And take a wild guess whose life is not worth living? Yes, we people with disabilities. Wilkinson believes "it would be permissible to withdraw life support from newborn infants with predicted severe cognitive deficits... congenital brain malformations such as lissencephaly or infants with trisomy 13 or 18. It would also potentially include infants with overwhelming physical impairments such as spastic quadriplegic cerebral palsy, severe spina bifida, or muscular atrophy". Why are such people, human beings, quality of life called into question? Wilkinson does not address this. In conclusion he writes the threshold view "would not lead to the withdrawal of life support from infants with a reasonable chance of a good life". But what exactly does that so-called "good life" life mean". I know many people with severe disabilities that lead what I would consider a "good life". I know people with severe cognitive disabilities that lead a "good life". Perhaps Wilkinson should visit an independent living center or better yet an adaptive sports program where people with disabilities are not only content but quite happy. If these words are not disturbing enough, I was taken aback to read the last paragraph in which Wilkinson wrote "It accords with a sense, (that I suspect many parents and neonatalogists share), that for us to be obligated to save a life it must not only be a life worth living, it must also be a life worth giving". No wonder people in the disability community take a dim view of bioethicists. This last statement has kept me up at night. No wonder I fear going to a hospital--people, doctors, may independently determine my life is not worth living. No wonder the divide between bioethicists and disability rights activists is so expansive. I think we, as in all humans, have a right to live. I for one do not want nor do I trust another person to determine when and if my life is worth living. Hopefully I will make that determination myself and if I cannot I that decision will rest with my son. I just hope he does not consult or seek the advice of a bioethicist.
