You might have read the story of Jerika Bolen recently. I know my friends in the disability community have been trying to reach her and share their stories and resources. Unfortunately, it seems that the media and much of the non-disabled world is ready to say goodbye to her – and even facilitate her death.
According to the story, Jerika is 14 years old with SMA, Type II. Although the writer characterizes SMA as “an incurable disease,” many technological advances have made it possible for people with SMA to live productive, fantastic lives. I know this because I have the same disorder.
Jerika has expressed a desire to withdraw medical support. In her case, a ventilator helps sustain her life. She has apparently asked for the provision of morphine and the withdrawal of the ventilator so that she can pass away. Her mother – her natural guardian – has assented, and the death is planned for the end of the summer. I’m hoping someone intervenes.
I understand that SMA affects everyone differently. My sister has the same disorder, and we both have different medical concerns. One of mine, as in Jerika’s situation, is chronic pain. It took me more than a year before I found a doctor that was willing to work with me and identify means of managing the pain. That year was incredibly difficult; when I felt pain, I couldn’t focus on work, and when I didn’t feel productive, I felt useless. Relatedly, Jerika has indicated that she doesn’t like taking her pain medicine because it puts her to sleep. Alternating between sleep and homework makes her life dissatisfactory, she says; in effect, the pain is controlling her.
Obviously, I can’t speak to the degree of Jerika’s pain nor the treatments she has tried. However, I want to encourage her to keep looking for treatment solutions. Something tells me that waiting until one’s pain hits a “9” or a “10” is an ineffective strategy for managing chronic pain. Perhaps a new specialist is in order.
The other major issue to address is the fact that Jerika is a minor at 14 years of age. (Remember Julianna’s story?) Yes, 14-year-olds should definitely have input into medical matters. But input is distinct from decision-making capacity. I will concede that Jerika likely knows more about SMA than many of her physicians. But at 14 years of age, Jerika doesn’t know what the future holds or much of life beyond childhood.
I was miserable as a teenager. I think many kids are. But able-bodied children are taken to counselors to get their issues addressed. Why is it that kids like Jerika are simply handed a bottle of morphine? The sad fact is that society devalues the lives of people with disabilities, of people like Jerika, of people like me.
Many outside of the disability community who have weighed in on this story have attempted to frame the issue in terms of respect for autonomy. This argument is disingenuous; a 14-year-old child does not have the legal capacity to make autonomous decisions in America. Respect for Jerika should be demonstrated as respect her life.