William Peace is a Syracuse University Professor and disability rights leader.
|William Peace with students|
As I see it, this was a misleading story from start to finish. No human dies in social isolation. Life and the manner in which we die has meaning. For decades, people with a disability that boldly and proudly proclaim a desire to die are lauded. The tracks to death are greased with over flowing support. At no point have I read a mainstream news article that addresses whether a 14 year old has the capacity to make life and death decisions. I have not read any story that asks why child protective services has not investigated the Bolen case. I have not read whether Ms. Bolen has received appropriate psychiatric care or even a psychiatric consultation. I have not read any story that discusses whether a minor has the legal right to die. What I do know is that if a morbidly sick non disabled child expressed a desire to die and had parental support an investigation would be launched instantly. Instead, we have a child with a disability that has expressed a desire to die and has received nothing but support from family, physicians, and the public. This troika of support might be lethal.
Carrie Ann Lucas wrote:
This non-terminally ill child is reportedly going to be placed into hospice sometime in August. While Ms. Bolen maintains optimal respiratory health using a bipap machine with a mask to assist breathing at night, she is able to breathe to sustain life without that device for a very long period of time daily. The only way her breathing will stop is to discontinue any form of breathing support, including her bipap, while administering a sufficient dose of morphine to suppress her breathing – in short euthanasia. If this plan goes forward, it goes beyond the allowed “double effect” of making a hospice patient comfortable even if it may also shorten life. Ms. Bolen is not terminal and being comforted through the dying process, but rather her death could only be induced with medication.There is so much we do not know about Bolen. In the stampede of support to end Bolen's life all nuance has been lost. She is terminally ill. She is in pain. She wants to die. Life is never that simple. Death is not that simple. Diane Coleman wrote:
as of today, we don’t know whether Jerika and her mother decided to continue with the plan to enter hospice, we don’t know whether the Wisconsin Department of Children and Families decided to intervene and secure better health care for Jerika, and we don’t know whether the hospice provider is willing to deliver enough medication over a sufficient period of time to produce total respiratory failure in a 14-year-old disabled girl who only uses non-invasive breathing support 12 hours a night and is not really terminally ill.I think it behooves all of us to ask these questions. I think it is the obligation of those directly involved in Bolen's care to answer the very basic questions multiple disability rights organizations are asking. Bolen and her mother chose to make the case very public. They requested financial support and a great deal of money was donated to their "cause". With this publicity comes responsibility. The stakes in this case could not be any higher. We are discussing the life of a minor. Minors have rights and deserve protection. Those protections extend to minors with disabilities like Ms. Bolen.