Everybody else is more interesting than me

[liv]

Happy Shavuot, people who are celebrating. I know it's fifty days ago now, but jack has written a really funny (and informative) series of posts about being dragged along to Passover stuff:
Part I - why my family are weird, Part II - timing, Part III - food, Part IV - disclaimer, Part V - more of my family being weird, also liturgy.

On a completely unrelated topic, tallguy has written a really beautifully drawn cartoon history of the MMR scare. I kind of want this to be a pamphlet that could be distributed in GP surgeries and schools and anywhere people might get medical information from sensationalist journalism. Thanks to moominmuppet, who included it in one of her many fascinating link roundups.

And on a medical issue which genuinely is controversial, rivka managed to host a discussion about assisted suicide which is actually thoughtful and doesn't just rehash tribal positions. Key point from the comments:

In my line of work I have met many people who clearly expressed their desire and intent to die. Some of them have tried to kill themselves, and have been foiled by an insufficiently lethal method or a rescuer that comes along at precisely the right/wrong time. It doesn't seem unusual or notable to me that a suicidal person would speak positively of suicide, right up until the end.

I think that assisted suicide supporters typically haven't had broad exposure to suicidal people, and so they think that suicidal people who have a profound disability or a terminal illness are somehow different from people who are suicidal for other reasons. But to my knowledge there is no psychological research to back up that claim.

This is really incredibly important, IMO. I'm not necessarily against assisted suicide in abstract principle, but it can't be morally acceptable in practice until we've sorted out a major social problem, which is that a lot people believe that the default state for anyone disabled is "suicidal". An able-bodied person who has suicidal thoughts gets psychiatric help, while a disabled person who has suicidal thoughts gets help with dying (or people agitating for such help to be more legal).

I'm a lot more worried about this than scare scenarios of relatives pressuring someone to kill themselves in order to inherit their money. There will always be some evil people, and we can only do our best to create a legal system which prevents them from carrying out their evil intentions. But a much bigger problem here is entirely well-meaning, ethical people who genuinely believe that suicide is the best option for anyone who doesn't fit their definition of normal, who assumes that disability automatically means bad quality of life. Now, sometimes suicide may be the best option, and sometimes a particular person's life is in fact unbearable. But this is assumed far, far too often. To quote rivka again:

There are many realistic fears/concerns that could lead someone who is terminally ill to think suicide is their best option: fear that pain will go uncontrolled, fear that you will lose your ability to communicate and be subjected to unwanted life-extending procedures, fear of dying alone in the ICU instead of at home surrounded by your loved ones.

It isn't that I think these concerns are not legitimate; I know that they are. It's that I think we need to fix them, not throw up our hands and say "we aren't willing to make our society a better place for you to die in your own time, so the compassionate thing is to help you kill yourself now."

There are a lot of different issues caught up in the assisted suicide debate. For example, the difference between withdrawing treatment or not starting it in the first place, and actually killing someone. The difference between helping a terminally ill person to die in the way they want, and killing someone because they can't face the thought of life at the level of functioning that they expect to have. The differences between physician-assisted suicide by the medical team actually treating someone, and assisted suicide by a relative acting as a carer, and actual suicide clinics. Lots of these distinctions aren't entirely clear-cut in actual practice, but lumping them altogether isn't helping the discussion.

And nearly all these issues are blighted by ableist prejudices. The issue of consent is incredibly fraught; lots of people truly, sincerely believe that they would rather die than live with X illness or X impairment, and are quite likely to be unable to communicate that the actual reality of it isn't as bad as they expected. So the person has to rely on the goodwill of other people who don't have the condition, and who may indeed have witnessed the person concerned stating definitively that they would rather die than [whatever]. I think the only moral way of dealing with this is for everybody to consider very carefully why they have the views about quality of life that they do, so as to make the most moral possible decision. And obviously there is a huge range of views on the topic among people with disabilities, who should on no account be treated as rhetorical point winners rather than actual people.

The thing is that we live in a world where a convicted multiple murderer is regarded as a hero in the cause of assisted suicide. Muddled beliefs about disability and quality of life let people like that get away with quite literal murder. Let alone people who are honestly trying to do their best in a highly fraught and ethically very difficult situation.

Hm, apparently I have more to say about this issue than I thought I did. Thanks to jack for listening to me rant when I first read rivka's post.

Comments

[ajollypyruvate]

Thanks for the Kevorkian info!

Moominmuppet's link posts are always great.

[sunflowerinrain]

This has given me a new set of things to think about. Ever since PPS really kicked in and my motor neurones started to die too rapidly and somewhat painfully, I've thought that one day I shall probably wimp out of life. It's worried me because as well as balancing the various cowardices, my religious views are against suicide, and I'm ambivalent about the whole assisted suicide argument. I have sympathy for those who are charged with murder for doing something they were begged to do, but some of the comments in the current wave of "support suicide" do make me feel like Frankenstein's monster wondering when the people with torches will turn up.

I think we need to fix them, not throw up our hands and say "we aren't willing to make our society a better place for you to die in your own time, so the compassionate thing is to help you kill yourself now."

Ah. There it is, the thing we should be doing.

I've always been embarrassed and reluctant about campaigning for the small percentage of the populace who are disabled in the way I am: some of the changes that make my life easier are expensive or have general nuisance value, and it doesn't seem fair that everybody else should be suffering for it. It wasn't until I realised that dropped kerbs are useful for all kinds of things, not just wheelchairs, that I was happy to request them, but the biggest change of view was when it struck me that almost everybody, should they live long enough, is likely to be in the same case as I am, because old age is the biggest disabler of all. The arguments about assisted suicide are likely to apply to most of us eventually, not just those of us who have MS etc., and I feel like pointing this out to a few suicide-supporters. Your point about fixing it so that people can continue to live or to die in the best way for them is beautiful.

I wonder if it's our culture's refusal to look at death that causes some of the problem? If we had our old people living and dying with their families, I wonder if we'd have more understanding? Although I've had close family and friends die, I've never been present, and I think that's not at all unusual. And don't get me started on Hollywood-live-forever...

[liv]

Yeah, I'm a big fan of moominmuppet, both the links and the writing. I don't want to just steal her links with nothing more than "this is cool", but some things are just worth sharing and I don't have anything to add.

The Kevorkian thing, it's just awful, because there are people who genuinely are advocates of the right to die and assisted suicide, and that's a real controversial issue that's worth having a debate about. But the way the media have run off with the Kevorkian story because they want to have that debate, is incredibly scary. He murdered disabled people, really frightening numbers of them, he did not "help" terminally ill people to die. It's incredibly close to the way the word "euthanasia" has become tainted because the Nazis were committing mass murder and calling it that.

[liv]

Thanks so much for this personal contribution, it's really appreciated. I'm sorry that the assisted suicide advocates are scaring you; they scare me too, and I'm not, directly, their target, it's "only" people I care about.

And yes, you are absolutely right that fixing society and the built environment for more disabled accessibility is good for everyone. A surprisingly high proportion of people become disabled through accident, and yes, nearly everyone gets old. I can report that living in Stockholm, a highly accessible city, made my life much more pleasant even though I'm able-bodied. It meant I could get through doors when carrying heavy bags, it meant I could use public transport even in awful weather, all kinds of things. And that's without considering the benefits to parents with pre-mobile children.

You have a good point about the death taboo, too. People talk about dying "with dignity" but I do wonder if death isn't one of those fundamentally undignified processes. There's a really interesting point in the debate at rivka's post, that many people receiving end-of-life care in Oregon just wanted to have the pills available and the forms signed. Then they didn't use them, but they felt they had the control, the option, and were no longer panicked about the progression of their illness. I find that fascinating, and really significant.

[sunflowerinrain]

Having a sense of some control over a frightening process which is essentially out of our hands does seem very important.

[jack]

We talked about this before. I agree you've got an insanely good point, and it was incredibly revealing (and consequently horrifying) to me.

But I also worry that you seem to have entirely dismissed the reasons FOR assisted suicide. You've given a very good reason not to support it because of the way it could be tragically used innapropriately, but it's not clear to me whether all cases fall into that category, or if the problems it was designed to fix, still need to be fixed.

[kaberett]

I should go and read the whole posting before commenting, I know, especially since commenting late, but: I am pro-choice on suicide and pro-choice on assisted suicide (by which I mean that I want there to be education and options and I'd much rather people tried to fix the situation in other ways first - I have intervened in a slightly breaking-trust way when a friend was suicidal over a thing that could trivially be fixed, for example).

This is a personal and selfish position. I do end up suicidally depressed. If I end up long-term depressed, and tweaking my endocrine system etc doesn't work, I want to be able to die and I want to be able to die in a way that doesn't leave a horrible mess for other people to clean up. I feel strongly that there should still be the signing-of-forms and cooling-off periods and so on, but nonetheless I want that option and wish I had it. (I am currently cheerful and of as sound mind as I get.)

I am vaguely aware of the nasty ablist rubbish that can go on. I've not read nearly enough about it and ought to, and part of the reason I'm putting it off is that I'm aware that it will be very distressing and, well, exams but also lazy :/ I appreciate that my selfish desire for assisted suicide as an option is something that needs to be weighed against the risk of a privileged majority making the wrong decisions - particularly with regard to the issue of not actually fixing the problems causing the suicidal desires where possible - and reluctantly and frustratedly allow that this is reason enough, probably, for it to not be a choice that I am able to make for myself, should I want to. But nonetheless I wish it was.

[kaberett]

Hrmm. I realise in fact that this possibly looks a lot like TAB-splaining and exactly the kind of but-I-couldn't-possibly-live-like-that; this is FWIW also how I felt when long-term depressed. (I think I wouldn't have offed myself if it had been "easier" and less messy even then, in fact.)