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...on assisted suicide. Because I think it's a good 101 on many people in the disability community's take on the matter.

I mentioned that I was disappointed in a song I discovered was pro-assisted suicide.

My interlocutor said:

what about [assisted suicide] "raises your SJW hackles"? If someone wants to make a choice, it should be their choice to make. It's not Social Justice to dictate how others live their lives, wtf

I responded (edited slightly for clarity):

The concern I have about it is that many people with severe disabilities are told by others who don't have disabilities that they are better off dead and ought to kill themselves. Here's an example, to prove I am not making this up (since nondisabled people often aren't even aware this is an issue and see it as a matter of personal autonomy divorced from any other social context):


I'll excerpt a relevant part, just in case people don't read it, but I strongly recommend reading the whole thing.

I was born with a congenital neuromuscular weakness called spinal muscular atrophy. I’ve never walked or stood or had much use of my hands. Roughly half the babies who exhibit symptoms as I did don’t live past age 2. Not only did I survive, but the progression of my disease slowed dramatically when I was about 6 years old, astounding doctors. Today, at nearly 50, I’m a husband, father, journalist and author.

Yet I’m more fragile now than I was in infancy. No longer able to hold a pencil, I’m writing this with a voice-controlled computer. Every swallow of food, sometimes every breath, can become a battle. And a few years ago, when a surgical blunder put me into a coma from septic shock, the doctors seriously questioned whether it was worth trying to extend my life. My existence seemed pretty tenuous anyway, they figured. They didn’t know about my family, my career, my aspirations.

Fortunately, they asked my wife, who knows exactly how I feel. She convinced them to proceed “full code,” as she’s learned to say, to keep me alive using any and all means necessary.

From this I learned how easy it is to be perceived as someone whose quality of life is untenable, even or perhaps especially by doctors. Indeed, I hear it from them all the time — “How have you survived so long? Wow, you must put up with a lot!” — even during routine office visits, when all I’ve asked for is an antibiotic for a sinus infection. Strangers don’t treat me this way, but doctors feel entitled to render judgments and voice their opinions. To them, I suppose, I must represent a failure of their profession, which is shortsighted. I am more than my diagnosis and my prognosis.

This is but one of many invisible forces of coercion. Others include that certain look of exhaustion in a loved one’s eyes, or the way nurses and friends sigh in your presence while you’re zoned out in a hospital bed. All these can cast a dangerous cloud of depression upon even the most cheery of optimists, a situation clinicians might misread since, to them, it seems perfectly rational.

And in a sense, it is rational, given the dearth of alternatives. If nobody wants you at the party, why should you stay? Advocates of Death With Dignity laws who say that patients themselves should decide whether to live or die are fantasizing. Who chooses suicide in a vacuum? We are inexorably affected by our immediate environment. The deck is stacked.

Here's an example from my own life, less extreme because my disability is far less severe, but perhaps it will also help to put things into perspective:

I have PTSD. I have struggled with suicidal ideation for most of my adult life. When I am suicidal, however, people don't say to me "How noble that you choose to die with dignity! Let's hook you up with the Mental Illness Gentle Exit Network and you'll be good to go!" Instead, they approach the problem as that my thinking is distorted. That I am depressed. That I AM ILL, and that hopefully with their help, MY ILLNESS WILL PASS and when it does I WILL NO LONGER WANT TO DIE.

And yet, I strongly suspect that if I framed my suicidality as "I hate having a disability and I can't live with it any longer," suddenly my wanting to commit suicide would be lauded, celebrated, hailed not as an anomaly brought on by illness, but seen as the profoundest expression possible of my personal autonomy. What in a nondisabled person (or in me as long as I don't remind them I have a disability) is a sign of weakness, a reaching for what's dubbed "a permanent solution to a temporary problem" is an odd kind of heroism -- as long as the person Final Exiting is doing it because of disability.

I don't know that I would want people not to have the right to kill themselves. I don't know that I'd go that far -- just like abortion worries me, but I ABSOLUTELY don't think that means it shouldn't be a woman's choice. However, I'm deeply concerned and alarmed that people who aren't disabled see us killing ourselves as somehow heroic.

Imagine if people applied the same line of thinking to being gay? "Look, a lot of gay teens kill themselves. It must be so hard to live with the burdens of being gay that some people just decide they can't fight it any more, and let go. We should honor their choice to die with dignity."

Suicide is rarely noble. I won't say it can't be, but it rarely is.

For more on this issue I would recommend checking out Not Dead Yet. I don't agree with everything they say -- I'm uncomfortable with the idea that assisted suicide should be downright illegal, and would prefer focus on the kind of cultural change that would make using it rare and seen as pitiful rather than noble. But I think it's an excellent place to get a grounding in the other side of this issue -- a side people who don't have disabilities get the luxury of never seeing.


There's also the deeply unfortunate conflation in wider society of the movement against assisted suicide with the right wing/with "right to life" anti-abortion groups. While I do think the groups can overlap, nondisabled people dismissing groups like NDY as "right wing" misses that its ties are fundamentally to the disability rights movement -- which, as a whole, is left-wing. (I cannot, for example, think of a single disability rights organization I know of that didn't overwhelmingly support Obama in the last election, or that didn't support "Obamacare." We were huge backers of it from go -- because many of the provisions in it were designed with us, at least in part, in mind.)

Again, I do understand why not permitting assisted suicide can be seen as a violation of autonomy. I worry about being totally gung-ho about taking a choice away, so I'm only so on board with NDY. But at the same time, anyone else who is a danger to themselves can be forced into a psychiatric hospital because of it. They don't get to say "I want to kill myself; it's my choice" and go on their merry way to kill themselves in peace. They are presumed to be ill and to need help, such that they can be forced -- their AUTONOMY CAN LEGALLY BE VIOLATED -- to prevent them from doing it.

That may also be a violation. It may be that that too is abuse. However, if it is, why is the fight for a "right to die" about disability? People who hold this view should be arguing that suicide should be presumed an autonomous choice with rare exceptions, even in the case of mental illness in which suicidality is common. I don't see them arguing that, so I see a difference.

I get that something like terminal illness can be different. "I've got a month to live anyway and fuck do I hate this pain." But the thing is, if you spend any time talking to people with severe disabilities, you're much more likely to hear "the doctors asked why I'm hangin' around here" than you might think.

So until and unless those assumptions are gone, this is going to worry me, even though I don't know what I think the answer is. Please pardon my Godwin, but we're not all that far removed in time from Action T4, if you think about it -- and notions of "life unworthy of life" were not unique to Germany. The US itself was big on eugenics.

(Proof here:

So yeah -- I'm not sure the idea that assisted suicide occurs in a cultural context makes me think no one should be allowed to commit it. Just like I don't think that living in a patriarchy means we should ban porn because we live in a society marred by misogyny. But it continues to worry me -- especially since people like this commenter are so unaware of the question that their only response to someone saying "I didn't like the pro-assisted suicide message in that song" is not "Don't be so political" or "You can surely still like artists who disagree with you!" but rather "wtf."

This entry was originally posted at http://stainless.dreamwidth.org/45974.html. It has comment count unavailable comments there. Please comment here or there.


( 2 comments — Leave a comment )
Nov. 13th, 2012 03:03 pm (UTC)
Well said
Nov. 14th, 2012 04:15 am (UTC)
shocking i am sure, i have no problem with the idea
( 2 comments — Leave a comment )


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