The story of Jerika Bolen’s decision to withhold medical support on September 7th in Appleton Wisconsin, gained national interest when Disability rights groups chose to intervene in the decision.
The question “should you be allowed to die” or of euthanasia has always been a controversial topic whether it is for animals, prisoners, and war. What is really troubling some people, is the power we have gain to being able to decide on the life or death of a person which would have otherwise been natural.
For people unfamiliar with Jerika’s story, the debate seems torn between the Bolen’s will to end their daughter’s physical suffering and the legal arguments offered by Carrie Ann Lucas, the executive Director of the Colorado based-disabled parents’ rights. According to a USA Today article, Lucas filed a letter to ask for the support of different disability rights groups to ask for the parents to reconsider their decision. Jerika’s story gained momentum in July, when a prom celebration was thrown as her last wish before entering in hospice care for her Spinal Muscular Atrophy of Type 2 at the age of 14-year-old. “the incurable disease destroys nerve cells in the brain stem and the spinal cord that control voluntary muscle activity” as described Jim Collar, from USA Today.
Lucas’ arguments aren’t groundbreaking yet do make us question Jerika Bolen’s decision. “A child doesn’t have the capacity to make those type of decisions” and the parents have a duty to protect their child. Lucas has declared her problem isn’t inadequate medical support but a mental issue which can be addressed. In a sense, Lucas seems to say that her decision of ending her life is more of a depressive response than a real physical one to her disease.
In addition, Jerika’s problem also questions the autonomy of disability rights at large. The issue of child protection by the parents should apply in Jerika’s case. Lucas seems to critique the Bolen’s lack of responsibility for their daughter’s life. Along with this, “there’s an attitude in the health care profession that really writes people off with disabilities” declared Diane Coleman, executive director of the anti-euthanasia organization Not Yet Dead. In other words, children such as Jerika Bolen and others before her, have used euthanasia as a response to their condition or their “discrimination against the old, ill, and disabled”. This takes the problem beyond the legal and moral framework to a social one.
After reading this, it is true that the stakes for the people featured in this story are different: On one hand, there is Jerika who suffers “seven out 10” pain level every day and seems inclined to end her life. Then, we have parents who agree with their daughter’s wishes. On the other hand, there are the disability rights activists who want to fight against euthanasia, such as Lucas and Coleman, by offering legal and moral arguments.
If we take out of the equation the financial and material aspects of this decision both for the parents and for the organization, it is nevertheless a very personal commitment which should only be influenced by the people directly involved in the process, and therefore excludes the disability right activists.
Even though, this issue raises opinions about how we see life and death (who has the decision of doing what and when) and whether the blame is on the medical support, the child’s mental state, or the parent’s decision; the choice has to be done away from media and national attention.
That being said, there are some valid points stressed by Coleman. The society seems to avoid dealing with old, ill, and disabled. Yet, there are more people suffering from disabilities than we think. For example, with the Paralympics going on it is impressive to see the number of talented and strong-willed athletes.
At the end of the article, USA Today quoted the attorney of the Disability rights of Wisconsin who said that “parent had no right to direct the withholding or withdrawal of life-sustaining medical treatment to their children who are not in (a persistent vegetative state)”. The answer to the statement is two folded. I disagree on the limitation of the parent’s responsibility on their child because they have her best interest at heart and know her personally. While, I agree with the “persistent vegetative state” point, because from the article’s stance, it seems as though Jerika is merely giving up on her disease and minimizes her pain by rating it a seven out of 10. For the most part, details about her SMA Type 2 is not fully disclosed in Collar’s piece, however, with Jerika’s joviality on the video of her prom it seems that she has much more to offer and a greater potential than she thinks she has.
All this to say, that for a question like this, there is not one good answer but a different one depending on which side we stand from. I think that Jerika’s parents are the most capable to make the decision with their daughter. This is not to claim that all cases should be tackled like Jerika Bolen’s case, on the opposite in fact, in the sense that some parents can be ill-intended and demand euthanasia for their personal interests but this type of decision has to be made individually and not based on a general demand.
