Soon after this case was brought to my attention, I was barraged with another dose of anxiety from disability advocates I follow, many of whom are against assisted suicide due to some very reasonable social problems:
- Our healthcare in the United States is run by insurance companies who may view assisted suicide as a more cost-effective alternative to actually giving people medical care (in other words, they may cover assisted suicide but not painkillers or surgeries to treat the ailment).
- People view disabled people as a burden that should be put out of their misery, which may lead to familial and other social pressure to choose this option.
- It's been documented that in cases where assisted suicide is legal, some groups of people (namely women) are more likely to have that option accepted, as if women are more worthy of death.
- Assisted suicide may be chosen because somebody has little social support rather than an inability to handle the actual ailment.
I eventually snapped out of it. Why? Because Nathan Verhelst was not "like me." He and I shared a medical diagnosis, and that's about it. I have a supportive family, he had an abusive one. He had dysphoria to the point where surgery was necessary, I am fine with my body without it. His body was rejecting his surgeries, I have no surgeries for my body to reject. And even if I had these same characteristics, there is no guarantee we're going through the same thing. Shortly after he was granted the right, Nathan died.
This is not a common debate among trans people, so I make no claims that I somehow know what the disabled community is feeling when something like this happens. What I can say, though, is that I recognize that they have good personal reasons for disagreeing with me when I say I do still support peoples' right to die.
Jerika's story is close to me because she is a punk, queer, disabled woman of color, the kind of person I'm likely to read zines by or follow on Twitter, when I see pictures of her I'm brought back to my college days and seeing people she reminds me of at conferences where we'd talk philosophy and activism. If she did choose to keep going on, I've no doubt that she would have the potential to produce wonderful things for her community as well as others. All the news coverage makes a big deal out of the fact that Jerika, if kept on life support, will eventually be unable to even smile, but being unable to smile does not make somebody non-productive. There are plenty of productive people out there who can barely move at all, and that's just if we consider production to be what makes a person worthy of life (it's not).
But that brings me to a different question, here: Why should she be obligated to be everyone else's inspiration and example?
Jerika's SMA is not the same SMA that people lamenting her decision have. By her own self-definition, she is in chronic pain that she cannot bear any longer, she cannot handle any more surgeries, she is being damaged by her pain medication, and most importantly, she does not want to live like this anymore. To say that she should keep fighting because one day she may write wonderful zines would be ludicrous of me, but it's just a particularly ridiculous example of what everyone else wants. They want somebody else to nonconsensually be proof that they themselves can be productive members of society. That's emotional and physical labor Jerika Bolen is not obligated to provide. Peoples' worthiness of life is not based on their ability to provide any sort of labor, including emotional.
This is something that goes both ways, of course. I worked with somebody in a home once whose parents--because he was nonverbal--were able to secure a do-not-resuscitate order for him at 30 years old. These were people who never actually visited him and had no clue as to his condition, but were able to get a doctor to sign him up. It was ostensibly because he was "always sick" (he was not), but all of us working there knew it was because they believed him to be a financial and emotional burden they would be better off without. Although he would also have the right to this--were it his choice--it is something he does not know about, and for those of us who were with him day in and day out, we know it is not a choice he would have made for himself.
The point is, all this talk about productivity and worthiness of life is meaningless. Everybody is worthy of life, but the choice of whether or not they want life is a basic personal liberties issue, not a reflection on disability as a whole.
Finally, the idea that our goal as humans should live as long as possible without any concern for the quality of that life is absurd. Certainly there is no moral fault in attempting to increase your health to live longer, but our cultural inclination toward life extension at all costs and treating death like an unnatural thing has led to people suffering terribly for extra years--perhaps even suffering more than if they'd done nothing at all as they cycle through painful therapies for illness--trying to avoid it. And again, if this is worth it to you, I fault you absolutely zero percent for that, but we also shouldn't act like it's terrible to let go, and that's at any age.