Search This Blog

Monday, December 16, 2013

Boston, MA: My Opposition to Assisted Suicide Legislation.

Tomorrow I am giving testimony before the Massachusetts Legislature Joint Committee on Public Health in opposition to H 1998 which would legalize assisted suicide in the state. Below is my very short statement. 

In the fall of 2010 I was seriously ill. After 35 years of of paralysis I developed my first and only major wound. My wound needed to be debrided—a bloody and arduous procedure that was the first step in what knew would be a long recovery process. Anyone familiar with the complications associated with spinal cord injury knows the type of wound I had (stage 4) is a potentially life threatening condition. In the initial stage of my recovery my concerns were limited. The day following the debridment I simply wanted to stop vomiting. I also wanted relief from the high fever I had caused by MRSA. I was very sick but not rattled. I knew I would recover. I was not going to die.  

I am haunted by my experience in the hospital. I am not haunted by my physical recovery which was in indeed long, expensive, and was without question the most difficult period of my life. I am haunted by the way a physician treated me. In the middle of the night a hospitalist I had never met examined me. I had a high fever and had been vomiting for hours on end. In the Hastings Center Report I wrote about what took place. The physician asked me:

“if I understood the gravity of my condition. Yes, I said, I am well aware of the implications. He grimly told me I would be bedbound for at least six months and most likely a year or more. That there was a good chance the wound would never heal. If this happened, I would never sit in my wheelchair. I would never be able to work again. Not close to done, he told me I was looking at a life of complete and utter dependence. My medical expenses would be staggering. Bankruptcy was not just possible but likely. Insurance would stop covering wound care well before I was healed. Most people with the type of wound I had ended up in a nursing home.”

The litany of disaster is all too familiar to me and others with a disability. But even this did not bother me. It was merely the build up to an offer to end my life. I was told  “the choice to receive antibiotics was my decision and mine alone. He informed me I had the right to forego any medication, including the lifesaving antibiotics. If I chose not to continue with the current therapy, I could be made very comfortable. I would feel no pain or discomfort. Although not explicitly stated, the message was loud and clear. I can help you die peacefully. Clearly death was preferable to nursing home care, unemployment, bankruptcy, and a lifetime in bed. I am not sure exactly what I said or how I said it, but I was emphatic—I wanted to continue treatment, including the antibiotics. I wanted to live.”

My experience is directly relevant to the debate about assisted suicide because I was not in any way terminally ill. Yet a physician deemed my life not worth living. Disability in this physician’s opinion was a fate worse than death. Three years later I remain shaken. I am shaken because people with a disability who publicly express a desire to die are all too often accommodated. The request is perceived to be a rational response to disability. Thus what I experienced in the hospital was a microcosm of a much larger social problem. Simply put, my disabled body is not normal. We are well equipped to deal with normal bodies and routine illnesses. Efficient protocols exist within institutions, and the presence of a disabled body creates havoc. Before I utter one word it is obvious that my presence is a problem. Sitting in my wheelchair, I am a living symbol of all that can go wrong with a body and of the limits of medical science to correct it.

I realized that fateful night my existence was not valued. I knew I had to justify why I had the right to live. I asked my extended family to visit me at all hours of the day. I had someone put in my chart that I was divorced, had a son in college, earned a PhD from Columbia University, and published in many peer reviewed journals. I did not do this to brag but establish my worth as a human being. Worse yet, I am not alone. This experience shattered my confidence. For a long time I felt ashamed. I wondered was the physician correct? Did my life lack value? Was my desire to live selfish? I did not tell anyone about what took place for over a year—not my family friends, or colleagues. The shame I felt was deep rooted. Eventually I told a former lover who told me I had to write about why took place. I did and it was a gut wrenching experience. I am deeply gratified the Hastings Center chose to publish my essay about what took place. The most gratifying aspect of writing about my experience was the response. Hundreds of people have written to me who either witnessed or had comparable experiences. So please listen to me very carefully. All the safe guards in the world that accompany assisted suicide legislation are inadequate. These protections are an illusion in a world dominated by physicians such as the one met. 


John Kelly said...

Great post from a great article, look for to hearing it at the Massachusetts Statehouse tomorrow!

sustainablesuburbsdiva said...

Phenomenal essay, and the testimony will be powerful. Wish I could be there.

Unknown said...

Great work Bill. Enjoyed our brief meeting in Toronto in November. Great to know that there are people of courage to speak in Mass. like you and John!

Liz Henry said...

I'm glad you wrote about it and really glad you were able to testify. And since you write about it here as well it will have a lasting (and discoverable) effect though I definitely agree with your worries about the staffer who will likely write a summary of all the testimony of the day. Thanks for being persistently badass.

Jisun said...

I'm catching up on my reading after being away for weeks, and I can't tell you how heartening it is to know that you are out in the world, speaking out. I've been lost and sad over what happened to Jahi McMath, and similar issues seem to be at play. I've told you this before, but thank you for continuing to write, even when doing so is difficult.