I posted this on my Facebook page and discussed it there briefly. I wanted to elaborate on my thoughts (read: use more words) here.
It is a first-person account by a woman named Kestrin describing a party/going away ceremony for her friend named Betsy. Betsy has ALS and has chosen to take advantage of new provisions in California that allow for her to willfully end her life. The writing is lovely and very emotional. Betsy has asked no one to cry, but it’s hard for friends not to cry when they’re saying goodbye. It’s hard not to feel the pain of that moment. Betsy finishes her party and ingests the prescribed barbiturates, falls into a medically induced coma, and eventually dies. You should read the whole post. It’s pretty quick.
When I posted the link, I said I was “deeply, deeply disturbed” by it. One person messaged me to question the usage of that word “disturbed” and thought it unwise. Another commented and asked for my rationale. I want to expand on both the choice of that word and my reasons.
For one, I want to be very clear that I use that word “disturbed” in a very literal sense. I wasn’t trying to tap into the ancillary connotations of the word to primarily communicate that I felt disgusted at Betsy or superior to her. People can say, “That’s disturbing” in a very sniffy way. But I meant it to say that, deep down in my guts, I was moved by what I read and and it unsettled the waters in my brain. The initial rock busting the surface was that of sadness.
ALS is a terrifying, terrible illness. People can live with it for a while and treat it to some degree. But the disease is going to get you and the end is not pretty. Betsy was already losing control of her body and had a hard time speaking. I felt really sad for Betsy to know that the extent of her suffering physically and the emotional trauma of the prospect of her limited future made her decide that dying in front of her friends and family was a better prospect. That should tell us how deep her agony was. That made me sad.
But the disturbance rippled out from there.
If you read the blog, you can read how much everyone is trying to make this occasion a happy one. People are trying to celebrate Betsy’s life and make light of things and honor her requests. There is something undeniably noble in their desires, their intentions. But, to me, the bare facts of the matter are glaring and make those friendly displays garish and… hard to swallow. The event is not a happy one. You can tell yourself that it is a happy thing that Betsy will no longer suffer. That sounds like something we can all be behind. The avenue of the end of that suffering, though, is her death. You cannot have the end of her suffering without that final fact staring you in the face. Death is not a good thing. Death a horrible, horrible wrench in the mechanics of Creation. It is something that we are supposed to weep. Her friends cannot hold back their tears because they are not meant to hold back their tears. When we pretend that something is not when it it actually is, the theater we are living out seems perverse. My suggestion is that it is not healthy to pretend that death is not in the center of Betsy’s story. We’re talking about her choosing to die. Not possibly die. Not try a new, experimental treatment that is dangerous. No, no. She is choosing to cease living. That is not an occasion for a party.
What disturbed me as much as that was the communal implications of Betsy’s personal choice. In the West, we take as plain truth that the individual should determine the actions of their own body. For many reasons, I think this is a good policy. There have been many horrible things done by people who believe they have the right to be decide basic matters for other people. Wars have been fought for such reasons. Great sins have been done in violation of that principle.
However, the modern (or should I say post-modern?) iteration of this conviction has totally disconnected the individual from the grounding of community. In other words, you may do what you want and what I think about that personal choice is irrelevant. As long as our elbows aren’t touching, you do you. First, I think it’s worth noting that this is a remarkably privileged position. You can only hold this view if everyone really does have the resources to take care of themselves. That simply is not reality in most of the world where people are not so wealthy. So I guess this where I say… “Check your privilege.”
Beyond this being a uniquely modern, Western view of the world, I think this kind of mentality denies the implicitly communal nature of human life. You absolutely cannot live alone as an island in the world. And these kind of “entirely personal” choices have ramifications that extend beyond the person making that choice.
In theory, we have boundaries to this philosophy of personal autonomy. If you push hard enough, you can find it with people. You’ll think of something so gross or weird or harmful that you’ll eventually find something that causes pretty much everyone to say, “Ok you can’t do that.” Off the top of my head, if I were to announce that I choose to be privately racist, no cross burnings, no law changing, I’m just going to decide to hate in my heart everyone who did not look like me, everyone would say, “Whoa, whoa. No. That’s not ok.” Why? Because at some point we think that individual choices have implications for everyone.
And I think here in Betsy’s story we have a statement about the value of someone life when they suffer, when they decline in utility.
Here’s what I mean: We’ve now legally reached the point where we are not so appalled by someone the death of someone with ALS that we just refuse to let it happen. What does this say, even if it doesn’t make it out of our mouths? We now say that people who suffer or who are disabled are no longer people with our lunging out to stay the hand that seeks to kill.
I have known depressed people. Clinically depressed people who suffer to varying degrees, but pretty much continuously, with deep depression. If such a person went in to a doctor’s office and said they wanted to kill themselves, what would the doctor do? What would the friends do? Rush to stop them! We’d have them committed and restrained to make sure they didn’t kill themselves. Why? Because we still fundamentally believe that that life is worth saving.
But how is Betsy treated? In the name of personal choice, personal autonomy, we back off. Why? Because we’ve decided that her life, a suffering life, a limited life is not worth the lunge to restrain. Her suffering has stripped her of something that the depressed person has.
Perhaps that decision is made based on prognosis. Or pain. Or… whatever. But the point is that in our minds, culturally, we now weigh the life of a suffering person or a disabled person differently than we weigh the life of an able-bodied person, even one who is mentally ill.
Betsy’s personal choice has ramifications. Participation in Betsy’s party has ramifications. Our legal approval has ramifications. And I think those ramifications are disturbing.
We have to reexamine our commitment to the “every man/woman is an island” commitments of our day. The truth is that the statements about any one life can and often do have implications for what we are saying about other lives, if not all lives. Yes, I understand that Betsy should have control over her body. I understand that we are scared of pain and loss of communication. Those things are still terrifying. But there are many people who are suffering and who are losing communication abilities who have every desire to live. No, I’m not suggesting people will start sneaking around and killing them. But for the sake of the collective valuation of their lives, we should not assent to Betsy’s choice for her own individual life. Betsy’s life is not just about her. It’s also about how we think and feel about those other lives.
Betsy’s life was about all of our lives. What we think about them, how we weigh them. We can dress it up in all the party clothes that we want. At the center of this party, though, was death. And we have become comfortable with death in a way that disturbs me to my marrow. Life, all life, whether it is housed in a wheelchair or running in the Olympics, all life is worthy of the lunge to restrain. No matter how much a life is dying to die. We should be able to collectively look at our suffering friends, our disabled friends and tell them that that kind of life is worth preserving, it’s not a lower class than our depressed friends or those who can do more for themselves.
I understand what some individuals want. But sometimes, we’re all better off when we don’t always get what we want.