The Value of Autonomy

I’ve been following this debate between Ross Douthat and Kevin Drum about the morality of assisted suicide. In his latest post, Douthat made a telling, though apparently unintentional, statement:

The slippery slope that I discussed in the column doesn’t amount to much if you don’t disapprove at all of people deciding to take their own lives. Absent that disapproval (and an accompanying, even-stronger disapproval of the people who assist them), you won’t be bothered by… people taking lethal prescriptions in Oregon because they’re worried about “losing autonomy” or “being a burden” (both of which are more frequently cited reasons for choosing assisted suicide under Oregon’s law than are concerns about physical pain)…

Douthat takes it entirely for granted that the fear of losing autonomy is an insufficient justification for desiring to commit suicide. But why should we believe this?

Not all suffering is purely physical. For a person who’s severely disabled, such as with a disease like ALS, to the point of requiring 24-hour nursing care – the point of being unable to speak, to get dressed, to eat, to use the bathroom, even to sit up or roll over in bed without assistance – I would fully understand if that person decided their life had become intolerable and requested help to end it. In fact, it doesn’t surprise me at all that people who commit assisted suicide cite loss of autonomy more than pain. Pain can be controlled with drugs, but loss of independence and dignity can’t be controlled; and for many people, those things might well be worse than pain.

It’s also true that some people who seek assisted suicide aren’t “terminally” ill, in the sense that they can be kept alive indefinitely with life-support technology. But there’s no reason why the only allowable justification for suicide should be a disease that’s inevitably lethal. If the disease itself doesn’t kill, but so alters the sufferer’s life as to completely preclude future happiness, why shouldn’t people be permitted to decide for themselves that they no longer wish to endure it?

Take the case of Edward and Joan Downes, which I wrote about in 2009. Joan Downes had terminal pancreatic cancer; her husband Edward was going blind and deaf, but unlike her, wasn’t at imminent risk of death. Nevertheless, he decided that he didn’t want to go on living without the woman who had been his love, his caretaker and his constant companion of over fifty years, and the two of them elected to commit suicide together so that they could die in each other’s arms. (My eyes still sting a bit when I type that.) That was a poignantly beautiful, even heroic, death, and I hope, when my time comes, that I have one anywhere near as good. If this is the kind of conclusion that Douthat would prefer to see outlawed – if he would take away people’s right to write an end to their own stories like the one Edward and Joan Downes did – then his view is cruel and senseless sadism.

Or take Terry Pratchett, who’s been diagnosed with early-onset Alzheimer’s disease. Alzheimer’s itself doesn’t kill, but the end stages aren’t pretty: mood swings, delusions, incontinence and paranoia, ultimately progressing to the complete loss of memory and even the capability for speech. Pratchett has announced his intention to end his life on his own terms, if necessary, when the time is right rather than suffer all this. But in Douthat’s criteria, this would be outlawed, and people with Alzheimer’s would be required to live as long as possible, regardless of the emotional pain and humiliation caused by loss of identity, regardless of the suffering inflicted on their family by watching a loved one’s mind slowly disintegrate. (This, I presume, falls under the heading of “not wanting to be a burden” which, again, Douthat scoffingly dismisses as an illegitimate reason to commit suicide.)

To decide these cases and others, the only real question that needs to be asked is this: Who owns our lives? The humanist view is that we are the owners of our own lives, and we are entitled to end them when we choose. If a person is suffering from mental illness that deranges their reason and gives them an irrational desire to die, we should prevent that, just as we’d (hopefully) prevent a person in the throes of mental illness from taking any other rash and irreversible action. But if a person of sound mind genuinely desires to exit life, we have no moral grounds to stop them, nor to criminalize the actions of those who compassionately help them on the way.

For Douthat and those like him, however, their moral system is built on the basis that a being called God exists, that they know what this being wants, and that they’re authorized to act on his behalf. In the name of these beliefs, they would force people to remain alive, force them to endure all the agonies of incurable illness, force them to endure all the humiliations of a disintegrating self, for no gain and no purpose. You couldn’t ask for a better proof that religious morality is fundamentally anti-human in its outlook and its spirit.

About Adam Lee

Adam Lee is an atheist writer and speaker living in New York City. His new novel, Broken Ring, is available in paperback and e-book. Read his full bio, or follow him on Twitter.

  • http://www.laughinginpurgatory.com/ Andrew Hall

    If you are a Christian then you are God’s property. Can’t go around destroying God’s stuff, can you? Only God can do that.

  • keddaw

    Given that a lot of these people are against public healthcare and public spending you’d think that not “being a burden” on Medicaid would count in assisted suicide’s favour.

  • Ritchie

    Whilst I am pro-choice when it comes to euthenasia, I can see some of the counter arguments are valid, and not necessarily either religiously motivated nor fundamentally ‘anti-human’.
    It is very easy for me now, as a healthy, young(kinda) man, to say ‘If I become paralysed, I wouldn’t want to live.’ But were I actually to become paralysed I may well find a quality of life to enjoy which I would not have previously expected. I may well regret my former hasty remarks. Where do we draw the line between a life worth living and one not, and – most importantly – would you change your mind if, by circumstance, you actually came to that point?
    Also, the phrase ‘of sound mind’ is horrendously subjective. A staggering one in three people with have some issue with mental health at some point in their lives, from depression and anorexia right through to full-blown schizophrenia. Is a person with depression of sound mind? Is a person without clinical depression, but who is feeling depressed of sound mind? Is a person with mental health issues of sound mind if their issues are not impacting their decision to end their lives? What IS sound mind, anyway?
    As I say, I am pro-choice on this because I think for the most part, these are largely insurmountable difficulties. We simply have to make the best decisions we can at the time. Nevertheless, I champion this far more tentatively and with more reservations than I do many other topics.

  • Fargus

    Good comment, Ritchie. I think it points up the importance of living wills, whereby your wishes, as best you can express them, are carried out. That way the only way you’ve got to trust your present judgment in a future situation is if you’re not in a condition to exercise judgment in that future situation.

    This is just like Republicans, though. Their hobby-horses are the beginning of life and the end of it, and they don’t care a whit about anything that comes between. Unless you’re super-rich.

  • Dante

    Why is it that the religious feel the need to impose their “morality” into our laws? Why do they deem it necessary to judge others based on their interpretation of a dusty old book? If they believe there is a judgement day for all souls, they should feel no obligation to legislate the morality of others, be it assisted suicide, homosexual relations, or eating meat on Fridays. If people choose to do these “abominations”, why can they not just let it be, knowing their all-powerful creator will dole out justice?

    Why is it the religious never think these things through?

  • http://www.unequally-yoked.com/ LeahAdmin

    I agree, the argument is most compelling in cases of loss of mind. I’d favor assisted suicide if I had Alzheimer’s since my mind would have already died, but, for some reason, my body was still shambling about unattended. That simulacra of who I once was is just a mocking reminder to the people who loved me.

  • Eric

    If I get to a point where I’ll never take a dump alone again, that’s when I’ll start considering my options. If at that point I find it’s not so bad, I won’t go through with it.

    As usual, David Hume covered all this stuff long ago.

  • http://kagerato.net kagerato

    The primary legitimate counter argument to suicide, whether assisted or not, is based upon obligations to others. It is rooted in the idea that if you die, you may cause harm to others’ well-being or happiness in some way. This side-steps the “who owns our lives?” question.

    It seems to me that fair laws surrounding euthanasia are going to be rather contextual, much as laws concerning killing tend to rely heavily upon the facts of the case. The examples that Ebonmuse cites here are the relatively clear cases. It’s really hard to see upon what basis one can object to suicide by someone with little to no physical capacity, since one way or another they are largely unable to help or sustain anyone else to begin with. (Indeed, the application of care is going to be in the opposite direction.) It’s a similar situation for those with obviously terminal illness and no meaningful hope of recovery. With little time left, it makes sense to want to be able to end life on one’s own terms.

    However, there are much more convoluted cases, and disturbingly enough they are not even that rare. Ritchie points out the depressed; that’s a common set prone to suicide attempts. To a certain degree it’s dismissing the issue to simply say that the depressed are mentally ill; I don’t think that quite gets to the heart of it. The suffering of the depressed isn’t any less real because it is caused in large part by physiological elements of their mind. The biggest difference between this and “more serious” illnesses is that we have some moderate reasons to think a person can recover from even grave bouts of depression (although there are without doubt exceptions).

    The toughest questions often involve people who have struggled with a condition for many years, and already have children or other people dependent on them for support. Their deaths may notably reduce the quality of life for their dependents, friends, and perhaps even others. Yet it seems rather callous to just dismiss their suffering on the basis that one or more people “needs” them. To completely override a person’s will according to the needs or desires of others is not much different from slavery.

    Ultimately, I think euthanasia should be legal given that the following conditions are met (as deemed by the individuals affected, or if necessary by a court):

    1) Written and signed prior consent is given, explicitly specifying the people concerned and their precise roles.

    2) There are at least two witnesses who can testify to that consent.

    3) The “assistants” follow their roles as actually specified.

    4) At least a 24 to 48 hour waiting period is established to give the suicidal time to reconsider their decision.

    5) Two or more doctors sign off that there is reasonable evidence that the patient has either a poor chance of recovery or a long history of severe issues, citing that evidence in their opinion.

    There will be troublesome, difficult, even intractable cases, but that alone is not sufficient to make a matter illegal.

  • Alex Weaver

    he biggest difference between this and “more serious” illnesses is that we have some moderate reasons to think a person can recover from even grave bouts of depression (although there are without doubt exceptions).

    I think a more revealing way to look at it is that even though the severely depressed may be of sound mind in other respects, one of the major symptoms of the disorder essentially translates as a delusional belief that they cannot recover from it or otherwise manage the suffering (similar arguments apply to PTSD, I think).

  • http://www.whyihatejesus.blogspot.com/ OMGF

    If people choose to do these “abominations”, why can they not just let it be, knowing their all-powerful creator will dole out justice?

    I suppose it’s because their god has incredibly bad aim and tends to not care about collateral damage.

  • Dark Jaguar

    It’s a difficult thing to work out. Teenagers who’re going through depression and are convinced they want to end it all? They should very well be stopped. While I might say they own their lives, the results of suicide are so completely irreversible and “null” that more thought than the average teen puts into it should be considered. It’s a situation where the choice they are making is of such stark and absolute consequence that life ownership becomes a secondary concern.

    That’s the opposite of the view I have in these cases. Someone completely bedridden by pain, or as you point out, who’s very pride as a human being is at risk of being destroyed due to the inability to ever accomplish their dreams or be of use to others, or of being reduced to a burden on others due to their state, they should be able to choose to end it. I’ve listed two stark opposites, but the fact is, life is fuzzy, and there are going to be cases that blur the line that I haven’t considered. They can be considered when they appear. The only caveat I have for the “life is unbearable” condition is pretty simple: that it be scientifically shown by best available medicinal evidence that their condition is genuine, the cause of their suffering, and can’t be treated in a way that makes life, by that person’s reckoning, bearable again. If there is medicine that can make someone bedridden able to walk again, by all means try to provide it for them (though that goes to the whole “medicine should be available to all” thing). Realistically though, the average person is going to want those options over suicide anyway, so that last point is probably just for show on my part and not a consideration that needs to be taken too seriously.

  • http://fancy-plants.blogspot.com/ fancyplants

    Ritchie said:

    It is very easy for me now, as a healthy, young(kinda) man, to say ‘If I become paralysed, I wouldn’t want to live.’ But were I actually to become paralysed I may well find a quality of life to enjoy which I would not have previously expected. I may well regret my former hasty remarks.

    But you would not be signing any papers while young and healthy. Most arrangements would be put together at the early onset stages of terminal or life-wasting diseases. In your example, you would make the choice only once you had spent time in paralysis, and had worked out for yourself if there is a bearable quality of life to be had.

    I am pro-choice, I believe it should be up to our own judgement whether we would want at some point in the future to cut our lives short, but the law would have to be pretty carefully worded.

    kagerato said:

    1) Written and signed prior consent is given, explicitly specifying the people concerned and their precise roles.

    2) There are at least two witnesses who can testify to that consent.

    3) The “assistants” follow their roles as actually specified.

    4) At least a 24 to 48 hour waiting period is established to give the suicidal time to reconsider their decision.

    5) Two or more doctors sign off that there is reasonable evidence that the patient has either a poor chance of recovery or a long history of severe issues, citing that evidence in their opinion.

    I would add to these an additional couple:

    6) At least one doctor interviews the patient before signing any forms and is confident that they are of sound mind

    7) A councillor is involved to establish that the patient is not being coerced into it by whatever means, by their family.

  • Valhar2000

    Ritchie wrote:

    It is very easy for me now, as a healthy, young(kinda) man, to say ‘If I become paralysed, I wouldn’t want to live.’

    Ebonmuse isn’t arguing this, nor do I think Kevin Drum is. As far as I can tell, if you developed such a medical condition but then found that it is not so bad, they would both support your right to change your mind every bit a strongly as they would support your right to remain steadfast (and so would I, by the way).

    Kagerato: I agree with the first 4 conditions you cite, but not with the 5th. I don’t think that poor health should be a factor in curtailing that a person’s right to make that decision; people should be able to decide on their own if they think their lives are worth living or not, and society should err on the side of acceptance when it attempts to evaluate the soundness of their reasons to decide one way or the other.

  • paradoctor

    I agree that suicide is a right, but I am very wary about allowing institutions to encourage us to exercise that right. For instance, Dr. Kevorkian defied the Hippocratic Oath, and so should not have gone about his activism under the title of Doctor.

    Part of the problem is that we cannot rationally compare life with death, for we cannot interview anyone who has experienced both.

  • http://www.punkassblog.com Antigone

    I’m considered depressed, and have thought about suicide many times (and attempted it a couple). You wouldn’t know I’m depressed unless I told you, because for the most part it’s a pretty hidden thing, and it’s considered deeply shameful.

    I haven’t tried to commit suicide for awhile because I know that there are people that would be pretty broken up about if I was successful. Yet, I am hard pressed to think that it’s moral to demand people do things with their lives for you, as people seem to think.

    We have this premise that existence is preferable to non-existence. While I would say this premise is good idea when it comes to respecting other people’s life (no killing, or leading to killing), I have yet to see any solid evidence that this is true.

  • http://darkenedstumbling.blogspot.com/ Leum

    One thing that’s very important: a world where assisted suicide is legal must be a world where treatment of pain and suffering is affordable so that people won’t be forced to choose between death or either breaking their banks or suffering in silence.

  • cat

    As a person with disabilities, I do think an extremely valid concern is being voiced here. We as a culture have intense stereotypes and bigotry against people with disabilites. We also have a money based system for access to medical care. A lot of these issues about accessibility are things that could be addressed-things that other people with similar disabilities have. Feeling as if you need to kill yourself because your aide is dying displays a different underlying problem-the lack of access to aides for people with disabilities to ensure our right to a self directed life. Seeing disabilities aides as a removal of independence or dignity is a social problem with how we view disability-not a problem with people with disabilities. But for a social system where people view our lives-the lives of people with disabilities-as inherantly inferior, many of these problems would not exist. These rationals are used to deny people the very accessibility aides and respect that would give them more self direction and control over their lives. Eugenics sentiment is very much alive and well, and it comes up constantly in discussions of the right to suicide. Look at some of your presumptions in this-that certain types of living with disabilities justify suicide where able bodied people should not do it; that people with mental illness should be denied the right to make choices about their lives; etc. Try acting as if people with disabilities and our lives are equally worthwhile and valid. If you would not advocate a right to suicide for an able bodied person, do not invoke it as a paternalistic measure in regards to people with disabilities. While I am not completely unsympathetic to the right to suicide argument, I am sick and tired of it being conditioned on, or playing on underlying ideas about, bullshit eugenicist notions.

  • http://yokohamayomama.blogspot.com yokohamamama

    Eric MacDonald’s site “Choice in Dying” covers this topic better than anyone I’ve seen. And today’s post is a tribute to his wife Elizabeth. Have the tissues ready before you click this link:

    http://choiceindying.com/2011/06/07/in-loving-memory-elizabeth-23-august-1969-8th-june-2007/#more-4501

    Eric’s is the most eloquent voice out there for choice in assisted dying– I encourage anyone with an interest in this issue to read as many of his articles as you can.

  • Sarah Jane Braasch

    The thought of losing my autonomy as I grow older terrifies me, more than illness.

    There is no right to engage in some activity, unless there is also a right to not engage in that activity or behavior.

    E.g. — There is no right to free speech, unless there is a right to not speak, if one so chooses.

    Likewise, there is no right to life, unless there is a corresponding right to die. (While not explicitly, the European Court of Human Rights has addressed this issue, leaning in this direction.)

    (This is why I call into question the so-called social and cultural rights. Because one doesn’t have the option of not participating in one’s culture.)

    I appreciate the comments above about the lack of access to mental healthcare. A dire situation, which will only worsen under the Republican Christianists.

    This mirrors the pro/anti abortion debate in that those who profess to be “pro-life” are the ones fighting most ardently against those provisions, which will actually save lives.

    My beloved baby brother killed himself last year. He was emotionally and mentally troubled. He would have maybe not hung himself, if there had been treatment and assistance in removing him from his toxic environment. I will never forgive myself for not having provided the support he needed to save his life.

    But, did he have the right to die — to choose to end his own life.

    Absolutely.

    And, be careful about saying that people with diminished faculties, for whatever reason, physical or mental, don’t have the right to end their lives.

    If they don’t have control over their own lives — if they don’t have autonomy, personhood — then it’s very easy to deny them control over their own lives and bodies in other areas.

    Like I said, saying that there is no right to die places the right to life in jeopardy.

    A policy shouldn’t not be implemented, because some people might try to abuse it. There will always be people who will try to abuse any policy. Government has the responsibility to implement safeguards against such abuse. Just as they do with every other policy in existence.

    I thought Ross’ response to Kevin was hysterical.

    Kevin said — paraphrase — that is a position, which cannot be justified on any other than theological grounds.

    And, Ross’ response was — that’s right, and the fact that you don’t agree makes you a bad person.

    At least that’s the way that I interpreted his retort.

  • Sarah Jane Braasch

    I think I may have overstated my claim about the ECtHR.

    I’m trying to remember what I was thinking of exactly.

    http://news.bbc.co.uk/2/hi/health/1958270.stm

  • HA2

    One more thing of note. Assisted suicide, in my mind, becomes a lot LESS ethically questionable when it’s taking place in a society with free* universal health care.

    If anyone interested in the possibility has access to end-of-life counseling, and has access to other possible treatments, and choose when it’s time for their life to end – that’s one thing.

    It’s a whole different story if they choose to end their life because it’s they can’t afford the treatment that would let them have a normal quality of life, or because if they live then their grandchildren won’t be able to afford college because it’ll eat through the entire family’s savings account, or somesuch.

  • Alex Weaver

    For instance, Dr. Kevorkian defied the Hippocratic Oath, and so should not have gone about his activism under the title of Doctor.

    How so?

  • Valhar2000

    It’s a whole different story if they choose to end their life because it’s they can’t afford the treatment that would let them have a normal quality of life, or because if they live then their grandchildren won’t be able to afford college because it’ll eat through the entire family’s savings account, or somesuch.

    This is true, but the solution to this problem isn’t to just ban suicide, assisted or otherwise. These kinds of arguments are actually arguments in favor of healthcare reform, and are scarcely relevant the the legality of suicide.

  • Jeff

    @keddaw: Given that a lot of these people are against public healthcare and public spending you’d think that not “being a burden” on Medicaid would count in assisted suicide’s favour.

    Then they’d be committing the sin of consistency.

  • axemaiden

    As Cat said above (#17) the problem with the assisted suicide movement is it’s steeped in ableism. It’s full of able-bodied people saying, “If I became disabled I would …” when they have no idea what it’s actually like to live as a disabled person. It depends on the idea that disabled people are lesser, that they’re a burden on their loved-ones and on society as a whole, that ‘loss of dignity and autonomy’ is a natural, inevitable consequence of disability and not a systematic problem resulting from the way we treat disabled people. When we look at a disabled person, all too often we see the disability, not the person, and we’re taught to believe it’s better to be dead than disabled.

    I have disabilities – I was born with them – and I grew up surrounded by this attitude. I grew up with a mother who said she wouldn’t have any more children because she couldn’t risk having another disabled child like me. Who criticised other families who had more than one disabled child because they ‘should have known better’. Who said I shouldn’t have kids of my own in case I ‘passed on’ my disabilities to them (I wouldn’t – they’re developmental, not genetic). Who said, when my grandmother had a stroke, “If that ever happens to me, just give me a pill.” Is it any wonder that disabled people internalise these attitudes and see themselves in those terms? And that they come into play perhaps even more strongly when a previously able-bodied person becomes disabled?

    Not all suffering is purely physical. For a person who’s severely disabled, such as with a disease like ALS, to the point of requiring 24-hour nursing care – the point of being unable to speak, to get dressed, to eat, to use the bathroom, even to sit up or roll over in bed without assistance – I would fully understand if that person decided their life had become intolerable and requested help to end it. In fact, it doesn’t surprise me at all that people who commit assisted suicide cite loss of autonomy more than pain. Pain can be controlled with drugs, but loss of independence and dignity can’t be controlled; and for many people, those things might well be worse than pain.

    The problem here is with the way we define dignity. We’ve set up a society in which we value independence and ‘doing things for ourselves’ above everything, to the point where we see those who can’t do certain things as not fully adult, or even not fully human (see Leah’s comment at #6 above). But take for example Stephen Hawking, who actually does have ALS. He’s severely disabled. Can’t move. Cant speak. Can’t eat. Can’t dress himself. Can’t even wipe his own arse. If he was Joe Public we’d probably think he had no life worth living, nothing to contribute – that he’d be better off dead. But instead he’s a professor at one of the world’s most prestigious universities, a teacher, a father, an author of best-selling books, a populariser of science, a TV presenter, and he even appeared in an episode of Star Trek. He’s achieved all of these things because he has access to appropriate care and assistive technology, and has people around him who believe he has something to contribute. And all that allows us to see his CAPABILITIES, as well as his DISABILITY. And I would say that dignity can be about making the best of one’s capabilities, whatever those might be, and not just about ‘doing things’.

    You might argue that Hawking is exceptional – and he is. But if we treated every disabled person like Stephen Hawking – if we saw the person and helped them make the most of their capabilities, instead of focussing on their disabilities – I wouldn’t have a problem with suicide (assisted or otherwise) as just another expression of autonomy. However until then I’d much rather put my energy into ensuring disabled people have every opportunity to LIVE with dignity.

    Further reading on assisted suicide and disability: http://www.raggededgemagazine.com/0301/0301ft4.htm

  • http://darkenedstumbling.blogspot.com/ Leum

    axemaiden: you and Cat raise a valid point, but one that I think is implicitly dealt with in the comments. We support a system of universal healthcare, one where aides would be provided to people with disabilities. Even in such a world, there would still be people who preferred death to loss of bodily autonomy; the fact that you believe they are wrong to so prefer doesn’t give you the right to deny them their right to end their lives in the manner of their choosing.

    Furthermore, the fact that you disagree with the reasons that some of the people who choose assisted suicide have, doesn’t mean that everyone who wants to die by assisted suicide has invalid reasons. What of people who are simply in pain that can’t be stopped, what of people suffering from the loss of mental autonomy, such as patients with Alzheimer’s? I fear the loss of mental autonomy far more than physical, and if my mind is so gone that my personality is no longer recognizable, I don’t consider myself to still be alive in any case.

  • axemaiden

    Leum, I love how your comment nicely erases the reality of my existence. Thanks so much for that. Would that we could all come and live in your perfect little fantasy-world where universal healthcare solves everything. Unfortunately I live in the real world. I live in a country which has universal healthcare, and I can tell you from firsthand experience it does NOTHING to address the rampant ableism I described above – in fact it makes it worse, because now you’re spending taxpayers’ money taking care of disabled people, so everyone now has a stake in policing disability and making sure disabled people only get as much assistance as they ‘deserve’ (which is usually less than they actually need). Disabled people will not get all the care they need unless you address ableist attitudes in government, in the media and in the general population.

    Even in such a world, there would still be people who preferred death to loss of bodily autonomy;

    There would, and as I said above, in a world without disableism I would fully support that choice. But here in the real world you cannot separate these two issues. The disabled person’s choices – such as they are – are informed by the internalised and external ableism they experience daily. Only once you’ve eliminated those attitudes will you be able to get a reliable answer to the question, ‘Is your life worth living as a disabled person?’

    Furthermore, the fact that you disagree with the reasons that some of the people who choose assisted suicide have, doesn’t mean that everyone who wants to die by assisted suicide has invalid reasons.

    I don’t disagree with their reasons. I just prefer to spend my energy addressing and eliminating those reasons, rather than supporting a movement that supports and perpetuates ableist attitudes, and essentially advocates a cull of disabled people.

  • jemand

    I agree that disablism is a terrible scourge on our society, with all sorts of negative outcomes. It basically denies personhood to people who can’t be independent, and results in things like people making arrogant pronouncements about how this or that location is MY house, and these resources were bought with MY money, and so that the relatives and/or friends who have been living in that house or improving those resources for months or years are treated with less respect and less rights as a tenant would be! These people’s own relatives, and they treat them with more scorn than a slumlord can get away with.

    HOWEVER, I believe a big part of granting people personhood and respecting their personal agency, is to recognize that even the victims of bigotry are the best experts on their life, and on their experience, and are uniquely capable to determine how they wish to live *their* lives, the present ones which have to be charted around popular social bigotries that make their lives harder and more painful than they HAVE to be, but those are the realities on the ground today.

    It’s not right to insist, say, that a woman remain in a graduate field that she’s finding a terrible fit to her personally and which is costing her far more than she wants to pay, emotionally, just because eventually she could be a better mentor to a young girl interested in the field. Such personal sacrifices as insisting all gay people everywhere have to be out because if they aren’t than it’s like choosing to let people remain ignorant and bigoted and makes the next generation’s life harder. These sacrifices CAN be good, because they DO make it easier for those who come after, HOWEVER, it is that person’s right alone to choose whether or not the sacrifice is worth it to them.

    And it’s in that light that I consider the question of the terrible forces of disablism pervading society, and the right of any individual to be able to die gracefully, as they understand the term. I think it’s important to fight disablism without actively getting in the way of people who just aren’t willing to make that great personal sacrifice of living with the pain, physical or emotional, of continuing their present lives in the present society we have.

    This should not at all get in our way of improving society so that others will have it easier…. I just don’t see how it is our right to require others to wait for that day if they find living right now to be so intolerable.

    I don’t think the fight against disablism and the fight to legally respect a right to die are at cross purposes at all, and different people can choose to fight one or the other, or both fights. There’s no real competition here, except perhaps for resources and energy, which are best apportioned, again, by the individual who’s actually engaged in activism, choosing the cause they think suits them best at the time.

  • Demonhype

    @jemand:

    That’s it exactly. As some people have said, right now they might feel that they’d want to die if they were disabled in this way or that way, but once it happened they might find that it isn’t as horrible as they’d thought and that they still have things they can accomplish or live for. There is nothing about someone being disabled that makes them “lesser” and that attitude does need to be fought. There is absolutely no reason to look at someone in, say, a wheelchair as less of a human being in any way. At worst, I might see them as someone who might occasionally need a hand in some physical task, but that’s it and that’s not bad. Everyone needs some help sometimes.

    But this issue is about an individual making decisions about that individual’s life. As you just said about other groups we’ve said about atheists–one of the simplest and most effective things an atheist can do to help is be “out”, but that doesn’t mean that people who do not “come out” are villianous scalliwags who are betraying our purpose. Coming out as an atheist has certain unfortunate consequences, in some areas they can be very serious, and it is up to each individual to decide whether he or she can deal with them, or is willing to deal with them, because that individual is the one who will have to live with those consequences. It’s wonderful when we see very brave people stand up against some really powerful evil attitudes (like Damon Fowler), but some people simply can’t or aren’t in a position to do so and I wouldn’t denigrate them for not outing themselves and then plodding through the shitstorm if it’s not something they feel they can deal with. Outing them against their will and before they’re ready is tantamount to making them a human sacrifice for my cause, and that is immoral.

    Same thing with assisted suicide. If someone, say, is injured and becomes quadriplegic, then it is up to that person to decide whether or not s/he wishes to live like that. Under no circumstances should anyone else presume to tell that person that they may not die or that they must die, for that matter. I remember this one woman who was a paraplegic in a wheelchair, fighting tooth and nail to force some quadriplegic woman to stay on life support, because if she didn’t suffer through what was (for her) unbearable suffering then it was like saying that all disabled people were worth nothing. Well, if that quadriplegic woman wishes to plod through the suffering for that reason or no reason at all, she should have the right. But if she feels she can’t face it, it’s not for anyone else to tell her she has to, that she has no choice. Plus, key point, the paraplegic woman still had the use of her arms and looked like she had a lot of power over her life despite her disability. She might feel differently if she found herself in a position where she can’t even wipe her own butt or scratch her own nose. Or maybe not. But if that happened, the only person who could decide that is her, not anyone else, and I certainly hope that no one tries to interfere with her life and living the way she tried to interfere in those of others.

  • Sarah Jane Braasch
  • axemaiden

    Jemand, you raise some valid points, but I disagree with your conclusion. I think the assisted suicide movement directly and negatively impacts the fight against ableism, because it perpaetuates negative stereotypes and attitudes about disabled people and plays directly into the ‘better off dead’ narrative. The assisted suicide movement is not by and large a grass-roots movement of disabled people; the vast majority of its supporters are able-bodied, neurotypical people who fear becoming disabled. Witness the comments on this thread – do you think it’s insignificant that the two people who’ve identified themselves as disabled are the ones arguing against assisted suicide, while those in support express their fears about what would happen if they became disabled? The debate around assisted suicide is therefore driven by able-bodied people and is centered around their fears and attitudes about disability, while largely ignoring the actual lived experiences of disabled people. (Yes, I am aware that some disabled people support assisted suicide – like any marginalised group, we are not a monolith.)

    The other problem with assisted suicide for disabled people (and the vast majority of people who do so ARE disabled, rather than terminally ill – see my link in #25) is that in most cases it’s solving the wrong problem. Moreover it’s solving the problem of ableism by getting rid of disabled people – which is why I characterise it as a cull. To draw on your analogy – much as I hate to compare marginalisations – if you have a woman who’s contemplating suicide because she’s being abused by her spouse, do you hand her a bottle of pills? No, you help her address the abusive situation. If you have a gay teen who’s comtemplating suicide because of homophobic bullying, do you get him a rope? No, you address the bullying. Why then is it any different for a disabled person? When a marginalised person is expressing thoughts of suicide because of their marginalisation, you don’t help them commit suicide, you address the marginalisation. If the problem for the disabled person is loss of dignity, or independence, or bodily autonomy, why is the solution to help them end their life, rather than finding some way for them to regain or redefine some of those things?

  • jemand

    axemaiden: “do you think it’s insignificant that the two people who’ve identified themselves as disabled are the ones arguing against assisted suicide, while those in support express their fears about what would happen if they became disabled?”

    I don’t necessarily know why that couldn’t just be selection bias? Most people who are disabled still retain enough agency to be able to kill themselves if they want to and those who don’t have the agency but still want to die are sometimes sick enough that respecting their wishes in getting a Do Not Resuscitate order results in them dying. However, a death from a DNR seems to me it can be far more painful or drawn out than it has to be, and a right to proactive euthenasia if the person wants it seems important. Heck, there are people who could make more or less a complete recovery if they were resuscitated, and live several years more, who choose not to and thus end up dead instead of alive. So for the people who are less likely to change their minds if they became disabled, there are currently some minimal rights to die that ARE still respected, or available to them. But then they are dead and cannot argue for their rights here still, while people who changed their minds or who always thought they’d choose to remain living even with significant medical problems can still share their stories. And those who are arguing FOR the right are coming from very many different personal positions on the subject, and who may or may not believe they would take advantage of the option in various circumstances. It’s definitely not all able bodied people who are simply fearing becoming disabled.

    PERSONALLY, I’m pretty certain I would want to live in most any stable circumstance. The world is far too fascinating to leave it soon, and if my situation is going to stay the same way for awhile, I could start accustoming myself. Even if I was losing my mind, I still think I would want to stay. But I know that is me, and not everyone is like me. I think some people are afraid if it is legal, they might change their minds and WANT to take advantage of the opportunity, but that it would be a sin, so they want the government to keep it illegal so they won’t be tempted. (I think there are some conservative women who either have already had, or probably will, have an abortion who protest against their legality for this reason.) But the government’s business is never to keep individuals from sinning like that.

    I think *here* the first two people to argue against assisted suicide are disabled only because the insistent voice of the theocrats is quieter here. The movement AGAINST assisted suicide isn’t driven by a grassroots effort of disabled people either, rather, it is generally populated by extremely religious folk who believe that pain can be holy that self-sacrifice is both mandatory and laudatory, who often talk about the presence of disabled people as a test and way to purify the spirits of the *nondisabled* not as people in their own right, and who want the law to match up with their sectarian beliefs.

    However, I agree that the way we as a society sometimes talk about this can be problematic, for example, proposed legislation that insists not only on a waiting period and meetings with psychologists to ensure as best as possible no coercion, but ALSO that the person have some disability or condition that can’t get better. Sometimes able bodied people want to die too, and I don’t really think we have a right to tell people when they are justified in using their rights and when they are not. The able bodied can’t be slaves to the state or the church, *either.*

    But anyway, you have convinced me the assisted suicide movement and the anti disablism movement CAN be at cross purposes if the former is engaging in unexamined disablist sentiment, but I do not believe they are INHERENTLY at cross purposes. I think it is very possible to support the right of a person to chose to die, and ALSO support the value of people who physically or mentally don’t fit into the center of the “normal curve” distribution of traits and abilities.

  • http://kagerato.net kagerato

    Very well put, jemand. I was trying to come up with the proper response to axemaiden, but your thoughts have thoroughly filled in my blanks.

  • Sarah Jane Braasch

    I second kagerato’s praise of jemand’s response to axemaiden.

    I just wanted to say, I think of the right to life/death and the right to free speech as being more or less synonymous.

    I was thinking about axemaiden’s comment about abused wives contemplating suicide, and my own brother’s suicide.

    I think choosing to end one’s own life can be the ultimate self-expression. The ultimate condemnation.

    Think of the waves upon waves of women in Afghanistan who have killed themselves to escape their hellish lives.

    They are claiming their autonomy. They are claiming their personhood. They are claiming their right to free speech and self-expression. They are claiming the ultimate right to control their own lives and their own bodies and their own choices.

    There is something beautiful in that choice.

    To take away that right away would be to further victimize these women. (I’m not implying that that right is recognized in Afghanistan to begin with.)

    Which doesn’t even begin to mean that we shouldn’t continue to fight for women’s rights as universal human rights without compromise.

    It’s not an either/or proposition.

  • Sarah Jane Braasch

    Also, when you say that persons with diminished faculties, be they physical or mental, have no right to die, because they have diminished faculties, you are taking away their right to personhood and autonomy, you are taking away their rights to control their own lives and their own bodies and their own choices. You are taking away their right to self-expression.

    Once you do this, you place their very right to life in jeopardy. You have given away their power. You have given away their right to make their own choices about their own lives to some designated group of others. You have given away their humanity to other persons.

    Who are you to give away someone else’s humanity? That is not your choice to make.

    It seems obvious to me that this is the last thing an activist fighting against disableism would want to do.

    To call into question the humanity of the disabled.

  • Sarah Jane Braasch

    The anti-abortion activists always like to use the “solving the wrong problem” argument too.

    But, now who is living in a fantasy world?

    Yeah, sure, if we lived in a perfect world, then maybe no one would want to have abortions or kill themselves.

    But, we don’t live in a perfect world. Most peoples’ lives are pretty hellish actually.

    But, taking away rights from people who are already struggling to hold on to their humanity is never the solution.

  • Mark.V.

    If God gets upset at people dying earlier than He intended then He must also get upset at people using medical technology to prolong their lives beyond the time He has set for them to die. So if euthanasia is contrary to God’s plans so too must be the use of medical technology.

  • Julanar

    I’m disabled, and I see no conflict between fighting the very real prejudice out there toward people like myself and supporting the right to euthanasia. I think that we need to remember that the euthanasia question only applies to a very small percentage of disabled people. There is a big difference between not being able to walk or hear or see and barely being able to do anything. Of course, if someone in a condition like this chooses to live, then they also have my full support. But when you insist that internalized self-hatred is the ONLY reason why anyone in such a situation would commit suicide, then basically you’re saying that you know these people better than they know themselves, and that is a very arrogant and dehumanizing attitude. Also, that assumption simply isn’t true. “Quality of life” is usually the main reason, and it’s a perfectly valid concern.

    The link you cited in #25 as “proof” that most people who seek euthanasia are disabled rather than terminally ill doesn’t prove anything. It’s an article written by someone who already agrees with you, and it specifically refers to Jack Kevorkian’s patients. I’m not claiming to know whether the statistic is true, but I don’t think it matters. Even if it were true, it would make no difference to the terminally ill. The exact number of a group of people doesn’t affect their importance.

  • Kogo

    Yeah, I’d rather have personal freedom of choice than be dragooned into this or that social crusade, particularly one premised on what seems to me to be about 3 or 4 layered social, political and economic impossibilities (to wit: total and universal health care, complete elimination of even unconscious ableism from human culture, etc).

    I am sorry but I will just always pick the immediate, risk-laden freedom rather than the flagwaving, open-ended, suspiciously utopian crusade. It’s the same way I’ll take safe and legal abortion over “a world where abortion isn’t needed any more” and how I will take the right to bear arms over “a world free of violence and fear.”

  • Kogo

    I should also add: I have always interpreted the philosophical upshot of the American Civil War as being, “Everyone is the owner of his or her own body.”