Back in July Jerika Bolen hit the headlines when over a thousand people attended a prom held on her behalf. Jerika had Spinal Muscular Atrophy Type 2 and at 14 years of age decided that she had had enough and wanted to go to prom before she refused medical care which would lead to her death.
Her decision has been the subject of a great deal of debate. People have commented that the description of her disability was ableist and derogatory. That she is not old enough to make that kind of decision for herself. That if she was able-bodied the world would be fighting to tell her that she is worthwhile and should live, but that because she was disabled it was seen as appropriate for her to bring about the end of her own life.
After the flurry following the prom the media seemed to go quiet for a while until last week when it was reported that she had now died. At which point it became the subject of a great deal of discussion once more.
Leaving aside her age, which I’ll come back to, I have been shocked at the comments within the disabled community. Activists for the rights of the disabled have long fought for autonomy. Yet, when Jerika chose to let her life come to an end somehow that is not acceptable.
Activists constantly argue that everybody experiences their disabilities differently. Yet other people with Spinal Muscular Atrophy Type 2 have written at length about their own experiences negating Jerika’s. They suggest that because they haven’t had the number of operations that it was reported that she had, that it couldn’t be true.
The truth is that only Jerika knew what she was experiencing. Only Jerika knew what she had already lived through and with. Jerika, alone knew what she was willing to live with for the rest of her life. At one point people were trying to have Jerika removed from her mother, as her mother was on the record supporting her daughter in her decision. I sincerely hope that those groups do not continue to appropriate Jerika’s life for their own ends and leave her family to grieve in peace.
However, given the statements that are being made I suspect that it may be a long time before her life is not at the forefront of those activists against assisted suicide or euthanasia. Not Yet Dead, for example, is calling for answers to a lot of questions. Some of which seem to have no respect for what Jerika and her family stated themselves.
Jerika reported that she was entering hospice care in early September regardless of her decision. That was her care plan. Hospice care is arranged when patients are terminal. So by definition Jerika was going to die; she chose to decide when.
It isn’t as if this is a new thing. Terminal patients are specifically asked about their wishes regarding resuscitation, often resulting in Do Not Resuscitate (DNR) orders. In Canada we have Advanced Directives.
As the image shows there are four components to an Advanced Directive. As a person with multiple disabilities I have one and I have specifically made sure that mine was written, and updated, at a time when nobody could argue that I wasn’t of a sound mind.
I personally have a DNR order in place, I am a registered donor, though most of my organs wouldn’t be useful to anybody else, and I have a care directive that states explicitly that no life-sustaining treatment should be provided in certain circumstances. It also provides details on how to contact my declared proxy who has agreed to act on my behalf, in the event that I am not capable of acting on my own behalf. This workbook provided by the Winnipeg Regional Health Authority is a good guide if this is something you want to think about for yourself.
To me, this is just a sensible plan to have in place given my health issues. It’s about my exercising my right to autonomy. That is to choose for myself what I want to happen to me in the event that I can’t tell people myself.
Nobody that I’ve mentioned this too thinks that it’s a bad idea. In fact, it’s often had people thinking about their own family and friends and whether they have similar values regarding end of life decisions.
Ironically, my Advanced Directive would result in exactly the same outcome for me as it did for Jerika.
So for me the issue isn’t about the decision itself. I fully believe that everybody has the right to make decisions about their own healthcare and their own life.
Where it could get grey for me, is Jerika’s age. She was 14. Julia Cramer makes a strong case that teenagers tend towards depression and dark thoughts and that nobody, should be allowed to make such decisions in their teens.
Yet, medically we allow patients to make decisions about their own care once their doctors believe that they are capable of understanding the consequences and ramifications of their decisions. In Ontario this includes children. There is no lower age limit. Last year Makayla Sault died after exercising her right to refuse chemotherapy. She was 11 years old. Other provinces do have lower age limits of 14 in Quebec and 16 in 16 in Manitoba.
Legally, children are treated differently once they reach the age of 12 as it is assumed that they are old enough to understand consequences. They get to make decisions themselves in custody cases. They are treated differently in the justice system.
So by all Canadian guidelines Jerika was old enough to make her own decision (Jerika was American).
So why then, when she made a decision that people didn’t like was she no longer able to make decisions on her own behalf? Why did she no longer have the right to autonomy?
Most surprising of all to me is the fact that the most outspoken voice against Jerika’s decision is the disabled community. This makes no sense to me.
While we might not agree with Jerika’s decision. As activists for our own autonomy I feel that we, the disabled community, should really be standing by her right to make her own decision about her own health care and life.
While many people attribute the phrase “I disapprove of what you say, but I will defend to the death your right to say it.” to Voltaire; it was actually written about Voltaire in the 1906 biography called The Friends of Voltaire written by the English writer Beatrice Evelyn Hall under the pseudonym, S. G. Tallentyre.
I suspect that similarly in Jerika’s case people have forgotten the facts of the matter and propaganda has taken over.
So let’s focus on everybody’s right to autonomy, regardless of disability. To paraphrase Hall:
I might disagree with Jerika’s choice, but I will defend to the death her right to make that decision.