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Wednesday, September 7, 2016

Jerika Bolen: Hard Questions Being Asked

I have addressed the Jerika Bolen case more than once here at Bad Cripple. Readers will recall the case. Jerika Bolen is a 14 year old with SMA type two. She has explicitly stated she wants to die. Last month she had her "last dance" which received a great deal of press. Since her last dance, she has been completely out of the news. No follow up stories have been published in mainstream media outlets. I assume the mainstream press is waiting for Ms. Bolen to die. Her death has been scripted. This makes me shudder. The mainstream press loves this story. Plucky terminally ill child states she has had enough. She is in pain all the time. Her quality of life is unacceptable. She does not want machines to breathe for her. Oh the heart break. This rhetoric sells newspapers, generates high television ratings, and is the wildly effective click bait (paging the

The problem with the above story is that it makes no sense. Many people with the exact same condition as Ms. Bolen lead rich and full lives. Most live well past their teens and many live into middle age. Most do not experience the type of pain Ms. Bolen describes nor do they have over 35 surgeries as has been reported by various news outlets. SMA type two is not necessarily a fatal or terminal condition. Could Ms. Bolen truly be terminal will? Yes, this is a possibility. It is also equally likely she could live many more years if not more decades. The only person that can answer these questions are her physicians and mother. They are not speaking to the press. In this void, some people are asking the hard questions the mainstream press has not thought of much less asked. Carrie Ann Lucas, executive director of Colorado based Disabled Parents Rights, is asking child protection services to investigate. Lucas is not alone. Other organizations have asked the same question: Not Dead Yet (I am on the board of directors), NMD United, and ASAN, Autistic Self Advocacy Network. Many people with SMA type two have discretely and privately sought to contact Ms. Bolen and her family. No wants to intervene in the case as one news outlet maintained. People such as Lucas and many others with a disability are asking a basic question: why has Ms. Bolen been lauded as brave and heroic? Why did 1,000 people from all over the nation show up at the "last dance"? Why do people with a disability that express a desire to die receive overwhelming support? Why do snuff films like Me Before You reinforce the notion that death is preferable to life with a disability?   

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. Link:

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. 


Kaileys mom said...

You idiot! She is suffering in pain. Does wanting relief make her a bad handicapped person. People like you make others with disabilities look bad. I wish people would quit harassing this family!

william Peace said...

Kailey, Exactly how am I harassing the family? I did not go out of my way to crowd source a fund raising campaign. I have not sought out the media to comment. I have not in any way made an effort to contact this family. Jerika's mother courted the media and publicity not me. I did not state Jerika was a "bad handicapped person". As for pain, if you look at the states with assisted suicide legislation pain is not listed as a prime reason people end their life. From afar this story makes no sense. People do not die in a social vacuum.

Nancy said...

I agree that it is highly unusual if the State lets this child die without looking into the situation. All I know is what I have read on your blog, because I tend to avoid sensationalized "news." From what you have presented, it seems that a Child Protective Services worker should at least interview Jerika's doctors to determine if she has a terminal illness. If she does not, then there is nothing to talk about and her parent(s?) must be stopped! Just where did Jerika ever get the idea of assisted suicide at her age, anyway?

It used to be that the rules for being admitted to Hospice included that the person's death by illness had to be within a certain time frame, or at least the illness had to be terminal. Hospice is now a for-profit enterprise (at least in my state) by some companies, so they accept a lot more people at a much lower level of illness. Then they provide a bit more help than the patient would otherwise get (such as bathing aides) and some perks the person would never otherwise get (like music therapy, pet therapy, and chaplain visits), while providing some grief counseling to patient and family, as well. They are allowed to provide extra dosages of pain meds, so that the person can be in a more drugged state than would be considered proper in a non-hospice patient. All of this can look quite attractive to a family or to a patient who is tired of sub-standard care and not enough attention.

Hey, if you give me a bathing aide who will give me a rubdown with lotion after the shower, visits from a guitar and harp player, if dogs or mini horses come and let me pet them for a while and I get to have someone sit with me and acknowledge my concerns and pray with me about them, if I can work out a few of my issues with my mother and then be pain-free and a bit too floating in space to care - maybe I would trade the length of my life without these simple human kindnesses for a shorter version with them.

Why should anyone have to make that choice? Why can't we give individuals and families the support and services and attention they need so that they CAN make the best of a bad situation? We are better than this!

Unknown said...

The media portrayal of this is really egregious, it makes me want to flip a table.

I read somewhere (Not Dead Yet, maybe?) that Jerika waits to take her medication until her pain level is at an 8/10. If so, that's a pretty basic thing she could change to improve her quality of life.

The crowdfunding thing is also baffling. Plenty of people who need money for medical care have pages on GoFundMe. I can't fathom choosing something like this instead.