A Grand Canyon Explained: The Divide Between Bioethicists and Disability Rights

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.

Wound Care: A Spectacular Day

Yesterday almost made me cry. I saw the wound care team and the doctor has permitted me to sit up in my wheelchair as needed. Yes, I still have two wounds, one small the other not so small. The more serious wound has under mining that they think is caused by constant bending in my hip. Asked how to reduce bending the hip I replied "sitting up". Well, let's try that was the reply. I was too stunned to reply and a host of restrictions were added to this glorious news--reduce transfers to a bare minimum, no trips out to the store, relieve pressure every five minutes etc. All this is fine with me and common sense. I do after all have two wounds. The odd thing is I do not know what to do with myself. I slept late and was literally afraid to get up. I was afraid of transferring from bed to wheelchair. Could I do it alone? Of course I can but no one was present to spot me. What I am feeling most now is fatigue and soreness. My arms and shoulders ache just from being up. It is the most wonderful ache I have ever felt.

It is impossible to relate how happy I am. I have my life back--I am alone! My black lab Kate is even happier, she wants to play. play, play. I can cook, clean, and be independent at home. Although this is nothing short of awesome one thought has been constant in the last 24 hours and brings me to tears--I am forever thankful to my family for sacrificing on my behalf. They provided care for me in a way no other people ever could. They did not do this for a day or two but for weeks on end without reprieve. Not once did a family member ever complain or make me feel like an imposition. Not once did anyone get mad at me even though there were times I was a royal pain the ass. When I needed space, I was given it. When I needed to voice my concerns, they listened. In short, each and every family member was as close to perfect as we humans can be. I suspect they would be mad at me for writing this because I must say I owe them all a great debt. Without them I would have ended up in a nursing home, an institutional setting that would have crushed my spirit. Instead, I was empowered at home--empowered by the love of my family. Today, I celebrate not for myself but for them--they made this happy day possible.

What have I done since I have gotten up? Well, I reorganize my kitchen, a job I really enjoyed. I cooked an early lunch to celebrate and read a book outside. I played with my dog. These basics don't sound like much but they made my spirits soar. Just think in another month I may even get to drive to the store. What I need to be very aware of is not to over do things. I am eager to split and carry fire wood and do major outdoor chores. But that will need to wait. For now sitting is more than enough. And not sitting too much or too little. I will seek a good balance and rely on wound care to determine that I am still making progress. I have come to far thanks to my family to have a set back. So my joy though heart felt is tempered by reality--I must not over do and be stupid. Event with this proviso I cannot help but be overjoyed.

Baxter and Assisted Suicide: A Nuanced Conclusion

Last January in discussing the Baxter case in Montana I argued that nuance is utterly absent from the debate about assisted suicide. Indeed, I find the entire tenor of most discussions about assisted suicide deeply depressing. I have come to the dismal conclusion it is not possible to sway people--that is views with regard to assisted suicide are too entrenched to ever substantially change. The result is we get two camps or schools of thought--those for and those against assisted suicide. I am opposed to legalizing assisted suicide as I believe it sets a dangerous president for at risk populations: elderly, disabled and terminally ill. Instead I wish we could develop a vibrant and widely accepted hospice movement throughout American society. Death is not the enemy, rather it is part of life. It is an experience we will all come to at some point. Of course this is easy for me to write as I am not facing imminent death and as such this is an abstract discussion. But why I wonder do so many push for laws that I think are not necessary, even dangerous? This is where that absent nuanced debate is needed and remarkably I came cross a fascinating quote that has kept me thinking for the past few days. Here I refer to John Robinson, an associate professor of law at the University of Notre Dame. In "Baxter and the Return of Physician Assisted Suicide published in the Hastings Center Report he wrote:

We should encourage states to see that the state neutrality toward suicide built into the Baxter decision is both illusory and dangerous. If we accept that death is, at some lvel, terrifying, and that the institutional extinction of human life is, at some level, even more terrifying, then we should not seek to facilitate suicide by insulating doctors who assist it from criminal or civil liability. We should seek instead to create in our communities values, practices, and institutions that will assure each of us the sort of care--familial, social, and medical--that will make the resort to assistance in suicide unnecessary. And we should go one step further, encouraging the state, through its public policy, to reduce to a minimum the conditions that make suicide, with or without a doctor's assistance, appear to be a a choice worthy of consideration".

When I read these words I thought of the mother daughter suicide that took place in White Plains, New York. To me that was a social and familial tragedy that could and should have been prevented. I hold American society responsible for that failure and by extension its people, including me. Just as I argue we need a social revolution to change the perception of disability we need a similar revolution when it comes to assisted suicide.