After writing about Christian Rossiter, a man who has asked the Supreme Court to affirm his right to choose to die, I was accused of supporting death panels wanting to knock people off more quickly than we do now. Usually this kind of shit amuses rather than offends; I’ve been compared to Mengele more times than I can recall. But this time it was one of my progressive allies, and I tend to expect better from my people.
There are a couple of issues that I want to bring up in response to Lauredhel’s post. And I’m going to start with making it all about me. I went back to my first few months at LP and they support the idea that I had of myself, which I invoked in the comments at the Hoyden’s place. Many of my posts here at LP have been concerned with the idea of human autonomy. It is the ability to form our own conception of the good life and make decisions accordingly that makes us truly human. I’ve written about abortion and euthanasia in similar terms: in the end, the person whose body a choice concerns must be allowed to make the ultimate decision.
I’ve seen many an abortion debate become about who’s the better feminist – the people who support better options for mothers or the people who want better abortion rights. Of course, pro-choice people want both and questions like this are more often than not an attempt by pro-lifers to wedge the opposition. Sadly sometimes it works. I wrote about the idea way back when:
A recently released report by Selena Ewing of Woman’s Forum Australia (not available online) points out that many women claim that they would continue with a pregnancy if they had more money/ a different partner/ were further ahead in their study or career. In other words, in different circumstances, they would make a different choice.
There are those who argue that this is proof that women have too many choices: if it isn’t available, women won’t choose something they don’t really want. But that’s not what these women are saying. They are saying that that this is their choice given the real world they find themselves in. Taking that choice away leaves them with an option they want even less. Good for women?
There are some things that society can do: we can ensure that single mothers are supported, that women can access paid maternity leave, that both men and women can access family friendly work places. If this really was about what’s good for women, we’d be doing that. But can we provide women with perfect husbands? Can we give them degrees before they finish their studies? Can we make them less old or less young?
Same goes for being a wife and stay-at-home mother. For many women, it’s not an option. Yes – some would like to but cannot afford it. But others find fulfilment through careers and study and other activities outside the home. More still find that spotless houses, perfect children and nutritious, hand-cooked family meals are most rewarding when someone else is scrubbing the toilet bowl.
The euthanasia debate has many parallels. We are absolutely not doing enough to provide the seriously ill and disabled with a decent quality of life. We all share the blame for that, and the responsibility to do better, and we need to talk about it more.
And (I am deliberately using the word ‘and’, not ‘but’, here) we need to also accept that we all have different concepts of what a decent quality of life means. We must accept that we live in this world, in which we have so far failed to provide for people like Mr Rossiter, and that his choices are based on what he has in this world rather than the ideal one. We have to be very clear that while widening the debate to all the issues Lauredhel raised in her post is essential, it matters very little to Mr Rossiter’s current situation. In the same way that when a mother of five living in poverty seeks an abortion we have no right to subject her to an essay on why we have failed women like her before allowing her to terminate. And we also have to accept that even if we provide both of these people with all the comforts and resources in the world, both may still make the same choice. Because some women still won’t want six children even if we give her a mansion to live in, and Mr Rossiter may still feel trapped in his body.
I refuse to give in to the wedge politics, and so I acknowledge that I believe Lauredhel agrees with everything I wrote above. It would have been nice to have received the same treatment myself. In order to develop our political philosophies, at some point we have to leave some issues for others to delve into. The Aristotlian concept of society means that we all benefit from each other’s obsessions. We can’t all understand nuclear physics and art and the offside rule in any kind of depth, but as a society we can when we let people specialise. To imply that another person disagrees with you because they have chosen another focus is intellectually dishonest and completely pointless. By all means point out where people have overlooked important issues. But just as it would be stupid to argue this woman must hate artists because she has dedicated her life to understanding nuclear physics, so too it is ridiculous and offensive to imply that because someone is more interested in the personal autonomy aspects of the euthanasia debate that she is opposed to the disability rights aspects and wants to knock off anyone who’s too much of a burden.
It’s not either/or. As Amanda Marcotte wrote recently in response to the idea of the slippery slope:
Actually, as someone who spends a lot of time researching the politics of choice, I’d argue that the slippery slope goes in the other direction, because this issue—whether it’s end of life care or your private sexual health decisions they’re trying to control—once you give up the freedom to make choice A, you find out you’ve often lost the freedom to make choice B. For instance, in the abortion ban era, women actually had fewer rights to have a baby right alongside fewer rights to not have a baby. Women of color were routinely sterilized against their will, and unmarried white women were routinely forced to give babies up for adoption. You had no more of a right to say yes than no.
And as Ariane wrote in comment 24 on Lauredhel’s post:
Actually, he hasn’t chosen yet. He has asked for the right. One of the reasons I thought the decision was good is that often when people have the choice, they choose not to die, and I hope he makes that choice, not that what I hope matters.
Giving people the right to choose whether and how to die is a statement of respect for the dignity and autonomy of the individual. It isn’t in opposition to the idea of dignity and respect for quality of life. It’s the same issue and you can’t genuinely respect one choice without respecting the other.
There are two main ideas that I hope people take away from this. The first is that we have an enormous benefit in the blogosphere that we don’t have in real life, and that is our archives. We don’t always have to rely on one post to figure out where a person stands. For better or worse, we have the opportunity to create a picture of what we believe over time, and when we’re unclear on what someone means we can refer to previous writing. The second is that euthanasia advocates and disability rights advocates are on the same side, and all need to work a lot harder at understanding that we all have the same common enemy on whom we should focus.
Very well said Anna.
Anna, I don’t entirely disagree with your original point. But there is a politics to how these kinds of decisions are made, and to the way that they are talked about. It means something quite significant that this ‘win’ for the euthanasia debate occurs in and through people effectively agreeing that life with a disability is not worth living, obscuring the extent to which we made it that way. I get that you don’t deny that, but because you saw as most important or significant for discussion that this was a win for the movement toward euthanasia, and not that this very decision obscures and sustains the intense ableism of contemporary culture — that is, that this win for the euthanasia movement occurs through the diminishment of the worth of the lives of those with disabilities — well, in the end, you are participating in the same kinds of politics as the court. I understand what you’re saying about any one piece of writing not being able to do all of politics — of course not! And this is part of why I am not simply willing to say that you are nothing more than wrong. But there is a politics to what gets talked about first, or more openly, or in more detail, and to what gets obscured. And every writer has to acknowledge responsibility for this, especially when they write into the public realm, as bloggers do.
Well said Anna. I think the abortion debate is a useful parallel to make. “If only women had more support and choices then they wouldn’t have abortions.” etc. The figure who is missing here is Christian Rossiter. We don’t know what he wants, excepts that he wants to be able to choose to die. I find it shocking that people are writing in such a way that denies him that personal autonomy. And Ariane is right when she writes that all because he won the right to die, doesn’t mean he’ll necessarily invoke it.
As some one who has thought about this long and deeply, I agree. One always has the right to change one’s mind about euthanising oneself.
Fine @ 3
I read in today’s SMH that Mr Rossiter wishes to consult further with his medical advisers before making any decision so he may indeed not exercise that right.
Absolutely agree, Anna. I have enormous respect for Lauredhel and her writings usually and was somewhat gobsmacked to see her take such a negative stance in relation to what you wrote on here a couple of days ago.
Ironically, I agree with what you BOTH wrote in terms of the issues in this case. Yes, most definitely we need to, as a supposedly civil and just society, look at the way we treat our most vulnerable citizens. But part of according them that level of respect also involves trusting their ability to make decisions that are in their own best interests, even if that includes ending their own life.
And you are also right on the point that we don’t know this man or his circumstances in any detail, only what has been reported. He would have thought long and hard about this; it is clearly not a decision he has taken lightly.
One thing I hope this whole sad situation achieves is that more needs to be done – as Lauredhel rightly points out – to support those who do have serious and debilitating disabilities in order to ensure they have the best possible quality of life possible.
In a civil and just society, it’s what we ALL deserve.
@Fine and others invoking autonomy. No one is denying that Christian Rossiter wants to die (or wants to be able to). Nor, I think, is anyone really disappearing him from the discussion. All that is being pointed out is that that desire does not occur in a vacuum, but in the context of rampant and virulent ableism, and that as a result, this legal decision reinforces that ableism. (Man says ‘my life is not worth living because I’m disabled’. Court says ‘alright, although we have always said life is worth preserving, we’ll acknowledge that in the context of disability, you’re right. Your life is not worth living.’ All of which obscures a social and political context that privileges those thereby deemed ‘able-bodied’ by disabling particular bodies.)
And Anna, I have to say that accusing someone of wedge politics for critically engaging with the obscuring of disability as a key player in this context is pretty problematic. Progressive politics has often has problems with doing intersectionality well… the least we could do is try to be aware of it.
I agree wholly with your points, Anna, but I have to say, this kind of intra-blog squabbling is so unedifying for all involved. You’ve already written about the issue here; if you have a problem with what Lauredhel wrote leave it on her post/blog, or address it in your original post. It feels so playground.
As do I, except for the part where I support killing off the disabled as long as it’s quick.
Thank you for your comments WildlyParenthetical. I am absolutely willing to accept that I overlooked a really big issue, and I get why that’s hurtful when everyone else is too. I also understand that while it’s all well and good for me to say that I ignored one huge aspect of the case because my philosophical interests lie in a different direction I don’t get to pretend that I’m not doing that within a culture in which the other side of the issue is routinely ignored.
But there is no excuse for my arguments to be so offensively characterised. You don’t get a pass on basic decency because you’re angry for a good reason. There is far too much grey in this debate for anyone to be completely right, especially when we’re all talking about another person – a person whose own voice was quite frankly lacking from Lauredhel’s post. Yes, talking about what we have failed to provide him is important. But at the same time we have to be sure we stay on the right side of the line that says here’s how we must do better, and not on the side that says that this man just doesn’t understand the issue properly, and so it isn’t a win that the courts said his body and his life are his own.
I missed the last two comments while writing my last post.
WildlyParenthetical (and Lauredhel) I didn’t accuse Lauredhel of using wedge politics, but I’m sorry if that’s what you took away from my words. For the record, I do not think that’s what she was doing.
Patrickg, I wrote this after it was made clear that the thread at Hoyden about Town was not the place for me to discuss what I wanted to discuss, which is completely fair. I understand the need to keep threads like that on topic.
But at the same time, I think this is an important issue to discuss. It’s not about cheap points and blog wars. I like and respect both Lauredhel and tigtog. But I think that the progressive blogosphere is currently suffering from an inability to disagree on issues within issues without it resorting to an either/or fight. It is wrong and unnecessary to paint anyone who agreed with yesterday’s court decision to any extent as being hostile to people with disability for the same reasons as it is wrong to paint pro-abortion campaigners as being hostile to mothers.
I agree it’s not always pretty to have arguments like this, but what’s the alternative?
I see this behaviour about as frequently from progressives as I do from conservatives. Whenever you try to talk about something that isn’t completely focused around progressive talking points, there’s frequently a cry that you’re a trying to undermine “the cause”. There’s plenty of progressives who favour arguing with emotion at the cost of intellect.
“a person whose own voice was quite frankly lacking from Lauredhel’s post.”
Absolutely this.
WP, you’re very successfully disappearing this person from the conversation. You’re ignoring his wishes by filing them under the category of ableism. The man wants to make a choice. If he thinks his life isn’t worth living because he’s disabled, that’s his business. If this judgement is a ‘fail’, then what would you prefer? That he be forced fed? Would you be more comfortable with his decision if he wasn’t disabled, but still wanted that choice? Because the fact is, we all have the choice to kill ourselves if we’re physically capable of doing so. He isn’t physically capable, so in a sense he’s arguing for the rights that other people already have.
Anna, I think you’re misrepresenting both myself and Lauredhel now. No one ever said that Christian Rossiter doesn’t understand the issue properly. Not EVER. I actually think he does understand the issue with perfect, painful clarity, a lived clarity that none of us, especially those of us who are temporarily able-bodied, will ever understand. The point is that it’s not an accident that his desire for a meaningful life remains unheard, ignored, and belittled – indeed, there’s not even a court that would hear that case – whilst his desire for death is approved. I really don’t read Lauredhel’s post as suggesting the courts ought not to have made his body and his life his own. I read her as saying that his life ought to have been more his own – more like what he considers to be a real, meaningful existence – rather than having pushed him into the corner, through neglect, derogation and disenfranchisement, where he sees that death is the only move he can make.
As for the ‘offensive characterisation’ thing. Look, I get it, at some level; I get that it’s upsetting to have someone point out, in no uncertain terms, that there’s a massive, problematic oversight in your work. But I have to say that saying that a minority perspective, coming from someone who is a member of that minority group, ought to be articulated more politely is pretty problematic. Think for a moment about what kind of a precedent such a court case sets for people with disabilities, about the fact that this makes them more vulnerable to the existing eugenicist tendencies of our world; in this context, I think that the kind of shocking paraphrasing of your earlier post works to demonstrate how easily that vulnerability is overlooked by apparent allies, such that the priority lies with ensuring people can die quickly rather than ensuring that people can live meaningful lives in the presence of disability. In the end, the offensive characterisation works to point out that what appears reasonable, and liberal, and progressive is shaped by the same problematic erasure of disability as that against which we are all, apparently, fighting.
Now, I know that you never actually said that he ought to be killed off quick, but the fact that you discussed your concern that he have access to the best possible option for death first, rather than situating his desire for death, and the court’s acceding to it, in the context of rampant ableism, isn’t just hurtful (and it’s pretty dangerous, methinks, to characterise Lauredhel or myself as hurt when what we’re trying to point out is that this is politically problematic), it reinforces that same dynamic. I get that you don’t see yourself as a person who would ever say a thing like that, but the point is, you don’t have to say it, because between you and the way the world works, you never need to. And that is what you need to be conscious of: there’s an ethics and a politics to what we write about: we contribute to, or resist, dominant ways of talking about things. That, for the record, is not about hurting people’s feelings. It’s about being aware of how intersectionality is always already at work in the politics we do, and trying to do justice to that.
I don’t see how you can fully support a person’s right to make their own decision about how and whether to die and not see the court decision as at least a partial win for that personal autonomy.
And given what I wrote yesterday was that it was a partial win, and that lead to my words being read as wanting to knock someone off, then obviously neither or you see it as a partial win. The very idea that you interpreted my words as wanting to knock him off removed his will from the equation. I didn’t do that, Lauredhel did. I talked about what he wanted; it was read as me wanting to do that to him.
Fine, when we treat individuals as if they were not a part of the context within which they live, we obscure our own implication in their lives. I’m not disappearing Christian Rossiter at all. I get that he wants to die. I get that this is up to him. I don’t think this means that we all get to pretend that’s got nothing to do with us. I’m situating his desires in a context, and demonstrating that this context is being concealed by treating his desires as if they leapt, ex nihilio, into the world. And that that context is one in which we all participate.
WP, I noticed that you haven’t answered my questions. What would have preferred the Court to do with his request? Would you have the same response to someone who wasn’t disabled who made the same request? Why shouldn’t he have the right of a fully abled person to kill himself?
Anna, I am a firm believer in individual autonomy, we expect people to look after themselves so why can’t women control their fertility – by abortion if need be, by access to euthanasia when they suffer from a terminal disease, or when they are so old all their friends have died or when their quality of life becomes constricted.
[I do not support suicide or euthanasia for angst-ridden or depressed young people.]
I agree with Lauredhel that we don’t provide nearly enough support to disabled people, hell nowadays they can’t even get a Disability pension and there is no government income whilst they are in hospital. 30 years ago quadriplegics were on a Disability pension from the date of the accident so that they saved the pension for 9 months to pay for equipment. [Mr Rossiter was probably forced into a nursing home because he couldn't pay the rent on his former accommodation flat/house] As Mr Rossiter’s condition hadn’t stabilised [his condition is deteriorating] he is probably on Newstart Allowance ie $234 a week not $284
However we need to support Mr Rossiter’s decision. He knows his own position, how he interacts with other people, what he wants to do. Its patronising to suggest that he should get into the blogosphere – can he afford the equipment or connect to people who can/will provide it? Did he enjoy reading?
I didn’t answer that, Fine, because it’s not actually what this thread is about. And that presumably you’re not interested in having the conversation where it’s actually happening – at HAT – because… ?
And in answer to your question, it’s handy, isn’t it, when it comes down to ‘how would you answer this court case’? Because then we get to obscure all the decision-making that occurred around it: all the neglect, all the ways in which this supposed ‘autonomous choice’ became the only possible choice Rossiter could make. We get to obscure the history that we have all participated in that have ensured that the world is built for and protects only those who have particular kinds of bodies. We get to pretend that this decision doesn’t have a history. Yes, I support the right of people to choose when and how they die. No, I am not willing to pretend that those choices happen in a vacuum. And fuck yeah, I’m going to argue that the attention in this case is misplaced. I’m going to ask why he could go to court to get permission to die, but not permission to have sufficient support to live a life he deemed to be worth living. I’m also going to ask what it means that the law gets changed only because it’s a person with a disability at stake. Because in the end, when we pretend that all that is at stake here is whether or not we’re willing to ‘let’ someone die, whether we’re willing to ‘let’ someone who is incapable of refusing food refuse food, we wind up in the position of only ever reacting to suffering, rather than analysing where and how and why it occurs.
But you go right ahead and reduce the entire thing until Christian Rossiter is just a cipher for any other person, whose autonomy gets acknowledged, and protected, and championed, in relation to his desire to die but specifically not in relation to any of his other desires about how he wants to develop a life worth living; where his desires not situated in relation to anything. That seems to be what this thread has turned into.
How do we know that there was something else that he wanted but didn’t get? All of us are stuck with generalisations, because we don’t know what Rossiter wanted and what would have made his life worth living for him. That’s the point. None of us know, but while I understand the desire to examine the society in which he made his decision, I also chose to see it as a partial win that he was granted the right to have the thing he actually asked for.
And please don’t criticise Fine for not going to Lauredhel’s thread when her thread came about because she chose to attack me without joining in the thread here first. See? This is a stupid to and fro where you should be commenting here, but I should be commenting there; and one side is taking this too personally and the other is talking important political issues… I’m asking everyone to quit it with that stuff, because it isn’t helpful or relevant.
It’s a pity that you won’t attempt to answer reasonable questions which are entirely germane to this thread. I don’t ask those questions at HAT because I know they wouldn’t be welcomed. The parameters of what is allowed to said there are strictly limited. I have no problem with that, btw.
Again we know nothing about how Mr Rossiter might want to live. We don’t know what desires he has, what support networks he has in place. We don’t know that he’s been neglected. We don’t know precisely what his attitude to his disability is. We don’t know that this is the only possible choice he could have made. We don’t know what the outcome of the case would have been if he had been a person without a disability. So assume away if you want.
It’s also a great pity that this has evolved into a situation where people are either supporters of people with a disability, or people who want to see them die. It’s a shocking misrepresentation. It’s entirely possible to see that much, much more needs to be done in this area and at the same time support someone’s decision to die.
Again, if you support someone’s right to die, what should the outcome of the Court case have been?
WildlyParenthical thanks for telling us about your visually impaired friend, in my family visual impairment generally comes with age related destruction of the optic nerve. I have had intimate dealings with quadriplegics and its not a state I wish on anyone, myself included.
I know nothing about Mr Rossiter’s former life, but lets pretend he had been a fitness fanatic who lived by a self-sufficient credo, he would hate the shape his body became, hate having to have someone dig his faeces out every second day, hate waiting to be fed – open your mouth for the aeroplane. And WP – he keeps having fits which leave him more disabled.
These days quadriplegics can’t even get stoned, smoking might rot their lungs – and nursing homes find it easier to deal with sober patients.
@billie
It’s not patronising to suggest it when you know people who’ve read reports about the case since before Dr Nitschke got involved. Here’s The West more recently (whose website’s URLs continually morph, but at least Google still has it cached) pointing out that a large part of his dissatisfaction with his current situation is that he has “insatiable appetite for news and current affairs” and now his only source of news is Foxtel.
If he’s so dissatisfied about Foxtel now it indicates that he used to satisfy his appetite with other sources before. What other sources are there? Radio, but he could still listen to that, so presumably that wasn’t his previous preference. What else? The printed word. So yes, he does like reading and the Internet (not necessarily just the blogosphere) is a particularly good environment for a news junkie – he’d fit right in with most of the commentors here. I’ve engaged online with passionate and perspicacious people whom I later found out were bedridden, and yes, some who were quadriplegics on ventilators – have you? If you don’t think so, just how sure are you of that?
And if he can’t afford the equipment, why the hell not? What is wrong with our system that he doesn’t have access to it? Nitschke talks about how Rossiter wants to go to Switzerland so that he can be legally euthanased – if he has the funds for that, or if people are willing to donate the funds for that, why not the funds for him to have access to better equipment for interactive pursuits?
SotBO: I don’t want to stop him having his own choices. But equally, I’m appalled at anyone with his life history, and his declared passions, not having access to a way to pursue those passions after his injury when I know that others are doing so successfully. That’s not silencing his voice about his situation as it currently is, it’s criticising how he came to be in this situation.
@Fine,
I’ll answer that one, even though it’s a derail from the point about whether Rossiter has had sufficient support that could have made him less desperate.
The right of people to refuse treatment that they do not want, even when the result is that they will die, should be upheld and the Court was correct, in my estimation, to do so.
I do not however see that as any sort of “win” at a societal level in a case where a man who could survive for years, with a demonstrated thirst for news and current affairs (see previous comment), and who has no family in the vicinity to visit him (see link in previous comment), has apparently not been offered the chance to have interaction with the countless people online who have similar interests. His career was as an industrial analyst, it is beyond belief that he was not familiar with computers in that profession, but it is not beyond belief that a computer system could be designed that he could use. So why doesn’t he have one instead of just a television?
tigtog @ 23 – It would I think be reasonable straightforward for someone to put together a computer system for him. Even 20 years ago they had systems for disabled people though it required quite a bit of expertise to put together. Today you’d be able to do with a few reasonably easily obtainable parts. And the hardware is getting so cheap its starting to get used in the PC gaming market.
In other news articles (and alluded to in the one you linked to) it has been stated that pain has been a serious problem for him. So perhaps that has been a dominating factor for him and its something that is not possible to control to the extent that he needs.
As an aside, there seems to have been an assumption made that if he decides his life is not worth living that this implies that other people in similar situations also have lives not worth living. I don’t think its fair to put that sort of burden on him. If he makes a decision to die it should only be taken as his view on his life and no more.
Those are issues tigtog, but for some people it simply isn’t enough to have interests and activities. The loss of control and the extent of dependence cannot be compensated for, they aren’t options but central components of quality of life.
@Chris,
I believe that the commentary is directed far more towards the reaction to his choice. There’s been a callous undertone of “of course he finds his life intolerable”, without any recognition that there are people living that life who do not find it intolerable.
@Michael,
Sure. But there are plenty of disabled people for whom life means so much more than just whether they are independent and in control. There are other aspects to life that they value above that. I’m not insisting that Rossiter do the same, but from all reports I’ve read it appears that he has either not been offered various forms of interactive equipment or has rejected the possibility of using them out of hand – because otherwise he would have them in his room.
Either way, whether he was not offered them or rejected them a priori, don’t you think that this highlights some very disturbing attitudes towards dependent disability in our society?
Michael Berube talks about the qualities of autonomy and what he calls participatory parity for people with disabilities. It is the lack of this participatory parity that Lauredhel was pointing out.
It is a perilous situation when personal autonomy is granted in the case of the right to die (as it should be, noone is decrying the decision of the court, let’s just stop with this pretense that WP and Lauredhel want to keep someone alive against their will), while society simultaneously withholds the means to participate in a meaningful life. That is like blocking all the exits bar one and telling someone that they can jump whichever way they choose.
Chris you misunderstand, noone is saying that Mr Rossiter should not have the right to choose not to be fed and noone is saying that he is sending an unfortunate message to other PWD.
The message that PWD are a burden and of little value is already at saturation point and barriers to partipatory parity are strewn through every aspect of our lives. If you are not someone who is involved in disability then you might not notice.
It is in the cinemas whose owners go to court to fight the requirement to install lifts. It is in the lack of information and education in accessible formats. It is at the doctor’s surgery where there is no safe place to take your child where you won’t be subjected to stares and criticism for their “bad behavior”.
It is at school where other parents tell you that you are only welcome as long as your child doesn’t affect their children’s educational prospects and the Principal fights to have your child excluded. It is on the streets which do not enable PWD to travel safely and it is in public places where you are threatened with violence for being noticeably different.
It is in the community service announcements that depict disability as a tragedy and the disabled as the focal point for others’ despair and pity and it is in a system which says that a 49 year old no longer gets to live independently with a right to privacy, and self-sovereignty but must be institutionalised.
That is like blocking all the exits bar one and telling someone that they can jump whichever way they choose.
YES.
Which is why this is different from the case of people with terminal illness, like Angelique Flowers.
The Rossiter case was not so much about an individual’s right to die, but the care provider’s obligation to do everything they can to help people. The judgment effectively said that the provider is released from that obligation only when the individual repeatedly and firmsly asserts their right to be refused treatment (food, medicine, whatever).
How do you counter the argument that a blanket release from this obligation will see standards of care go down, not up; and the kind of pressure described by su and others will lead to people “not wanting to be a burden” when they might otherwise wish to prolong their lives? Personally I think this is a bit hysterical but I don’t work in the sector, and would be interested in responses from those who do.
Fine, as other commenters have been pointing out, the reason that I didn’t want to talk about whether or not the court had made the correct decision is that that very reduction is ableist: it obscures the entirety of Christian Rossiter’s life, and the ways that it has been shaped by ableism. This is the issue I’ve been trying to point to over and over again on this entire thread: when we obscure the context within which that decision was made, and simply think that we just have to agree or disagree with the court’s decision, we participate in ableism, because we participate in refusing to acknowledge how the ableism of the context has made no other choice possible for Christian Rossiter. I agree with su: blocking all the exits and then telling someone to choose is a great analogy. And let’s not forget that the only choice that Christian Rossiter has tried to make that has been heard is the choice to die. I think it means something that the world is more willing to accede to the request of a person with disabilities to die than it is to actually grant them those things they want in order to live the life they want.
And Anna, I’m not exactly generalising with no information. Christian Rossiter has spoken about his desire for access to more news and current affair information. That he is being denied that, but given access only to FOXTEL (!), demonstrates that his care has not been about fulfilling his desires for a meaningful life. It has been about denying every attempt of his to assert autonomy. Oh, except when he wants to die. Quite aside from which, I personally think it’s a bit disingenuous to suggest that we know nothing about how someone with a disability is experiencing that disability given the effects of ableism that he is quite obviously fighting against… Now, to be clear, I am not saying that Christian Rossiter doesn’t understand the situation. I’m saying that when we reduce this issue to whether or not his autonomy in his choice to die is being respected, we miss allll of the ways we have participated in making that the only possible choice.
There has been lots to learn from this and associated threads, not least from WP @ 31, which seems to me a coherent summary of what WP is trying to get across. The term “ableism” is new to me and my initial reaction was negative. On reflection I think my reaction may have been based on aesthetic grounds, as often with a term not in common usage. (Yep, I know that says something about me.) But a sociologist’s role is to unmask taken-for-granted reality, especially where it relates to power relations and norms that can be oppressive to particular groups, but are regarded as the natural order of things.
I very much agree with Anna’s emphasis on and valuing of personal autonomy. In Erik Erikson’s personality theory, autonomy is central to the second of his first three development stages, which all occur as the dominant developmental focus during the early childhood years. The other two are basic trust and initiative. “Favourable outcomes” or “strengths” built in these years include drive, hope, self-control, willpower, direction and purpose.
That doesn’t do justice to Erikson, but is meant to indicate the scope of the patch he was working in and which for me still has validity. Incidentally he worked out his ideas through working children with several Native American groups and from literature as well as the so-called mainstream.
So the basis of personal autonomy is laid down very early in life and is necessary to the development of personal freedom and the ability to make choices which may or may not conform to dominant social norms.
The practice of competition in achievement notably in the physical sphere is quite problematic in this regard. Seemingly there is no problem in celebrating excellence in performance, but the ranking and giving special rewards to the winners has implications for the valuing of everyone else. This is why many in early childhood education contexts don’t go in for prizes for winners.
We need to value people for what they are and help them to be all they want to be without making judgemental and value-based comparisons with others. If anything we should value difference.
There is still I think a useful distinction to be made between freedom to as well as freedom from, with the former focussing on personal capacity building. In that sense there is no doubt that Rossiter has been badly let down. At times it seems we do a lot better for prisoners.
The only other point I want to make is on the kind of discourse we have on blogs. I can’t pick it up quickly but I think WP queried whether anger in expression was unavoidable or undesirable. I don’t think those were the words used but along those lines.
The problem with anger and acrimony is that the effects are quite beyond calculation and start a range of new wildfires that we spend a lot of time and energy getting back under some kind of control. And it tends to harden positions rather than change them. Finally it silences a lot of potential contributors who just don’t want to get involved.
In a recent thread of mine there was an outbreak of acrimony which was defended as a necessity in order to speak truth to power. Be that as it may, I had been assiduously building a space where farmers felt free to participate. In a subsequent thread where I thought some may have showed up not a single one did.
I’m not saying that anger does not have its place in human communication. My wife is a great exponent of it at times. When she is angry her logic and articulateness ramp up in similar measure. But most of all her body language sends out messages that contextualise the verbals and build bridges at the same time. It took me 30 years to figure out how that worked.
The non-verbals are not available to us on the blogosphere. At LP the essence of our comments policy can be summed up in in the word “civility”. I think it is the way to go, certainly for us.
“Either way, whether he was not offered them or rejected them a priori, don’t you think that this highlights some very disturbing attitudes towards dependent disability in our society?” – tigtog
Seems to be quite the opposite, if he’s been offered all the options and has rejected them. The only disturbing attitude that I have been able to discern is that some have suggested he shouldn’t be allowed to act on his wishes.
I wonder is this is in part due to an underestimation of the immensity of the challenge posed by such a significant injury. The psychological adjustment required is mind-boggling. Going from an active out-door lifestyle to being unable to move is quite something. And it can be the little things that are most significant – imagine that you can’t scartch your nose when it itches, or adjust your hair when it falls in your eyes. Or just think about what you do when you sleep – adjust yor pillow, pull the sheets up a bit, down a bit, roll over, roll back, fluff your pillow again………he can’t do a single one of those things. They seem insignificant, and we don’ even think about them, but they are fundamental elements of self-control that we build the rest of our lives on.
WP,
The legal right to die is something worth discussing in it’s own right, and Rossiter’s case is a valid example of how the courts have dealt with such an issue. Sure, the treatment of people with disabilities is an important issue, possibly even a more important that the right to die. However, there is no obligation to mention one issue when talking about the nother and there is certainly no excuse to engage in offensive mischaracterisations in the way that Lauredhel did.
There is a big difference between actively denying someone rights (such as a court denying the legal right to die) and passively not enabling them to have the same autonomy as able bodied people. The same way there’s a big difference between letting someone die and actively killing them. It’s this difference that makes the issue of someone having the legal right to die worthy of discussion in it’s own right, separate from the issue of how much support disabled people should received.
“Michael Berube talks about the qualities of autonomy and what he calls participatory parity for people with disabilities. It is the lack of this participatory parity that Lauredhel was pointing out.”
Su, Anna has pointed out that her problem isn’t to do with Lauredhel pointing out what her original post may have lacked. Her objection is that it was done in a way which misrepesented her post in a very offensive way. That is that Anna wants to ‘knock off’ people with disabilities quickly.
“Either way, whether he was not offered them or rejected them a priori, don’t you think that this highlights some very disturbing attitudes towards dependent disability in our society?”
If he hasn’t been offered alternatives that will make his life better, that’s a problem. If he has chosen to reject them a priori – no, that’s his right.
Again we should be able to talk about two concepts, the right to choose to end one’s life when we want and the rights of people with disabilites to equality within our society, without assuming the two are mutually incompatible and it turning into a war.
One of the most confronting documentaries I’ve ever watched is ‘The Madamoiselle and the Doctor’, which covers a lot of this territory. The eponymous Madamoiselle was an elderly French woman now resident in Australia who wanted to end her life. She’d had a great life, was in excellent health, wasn’t suffering from depression, had great friends, but had decided it was time to die because she wanted to go out when her quality of life was still extremely high. She didn’t want to deal with pain, ill-health or disability and had made a rational decision about what she wanted to do next with her life. I know that there’s an argument to be made that the reason she felt this way is because we treat illness, old age and disability so badly, but no matter what options she was offered she rejected them. Her response was simply that it was time for her to go. Sometimes people have very strong opinions about how they want to lead there lives. She was one of them.
Interesting post.
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I do support the right of people to die, I have some relevant personal experience but the issue is a complicated one.
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What’s at the centre of this is a convction that human life is inherently precious and must be maintained as matter of absolute morality. This means that, even in the event that one is terminally ill and has nothing but terrible suffering before them, they must persist. Understandably many, including myself, will react with incredulous head-shaking.
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However there is a problem.
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First what if the suffering individual is not autonomous. What if they have advanced Altzheimer’s for example? They would be incabale of remembering anyone or even processing music let alone making a rational decision about staying alive. It is then up to someone else. And when it is up to someone else where does the line get drawn and how?
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It isn’t a simple matter because allowing people to assist compassionate suicide may create an opportunity for callous persons to eliminate people who don’t want to die but require a lot of care. It’s tricky.
When a patient has advanced Alzheimers they forget to eat or need assistance to eat, I believe in really advanced cases they have lost the swallow reflex so the throat is massaged to get the food down the oesophagus.
Our society allocates insufficient money to care for the most vulnerable members of our society adequately. We have become increasingly individualistic and user pays orientation so the trend is that care for the most vulnerable members of our society will become less adequate.
Either
- human life is precious AND we fund institutional care for the vulnerable adequately
OR
- we permit euthanasia when life is terminal and/or there is no quality of life
You are making a false distinction here, some people with severe disabilities including quadriplegia do live outside of nursing homes, they do have access to technologies that vastly enhance their ability to participate. Inequality of access to this kind of personal autonomy is not simply a passive process, there are systemic factors which see people with the same disability receive vastly different levels of support. This is one of the symptoms of a disability support system that, as Bill Shorten acknowledges, is fundamentally broken.
Quality of life was the key issue in Mr Rossiter’s case, so why is it that we should not consider the conditions that contributed to his poor quality of life? It seems to me that the two are inextricably linked.
What does it say about society that there is a broad based political support for the exercise of personal autonomy in the manner or timing of one’s death, but that the conversation about the exercise of personal autonomy in the manner in which a PWD is able to conduct their daily life has little exposure outside of disability communities?
Sorry, I forgot to put the blockquotes around “It’s this difference etc ” – a quote from Despis’ comment.
su @ 39, what you did was start with the concluding HTML tag, so the HTML instruction was cancelled before it started. Fixed now. While you are at it, it’s better for other readers if you make a linking reference like “depisis @ 34″.
Billie – human life is precious AND we fund institutional care for the vulnerable adequately
OR
- we permit euthanasia when life is terminal and/or there is no quality of life
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Wherefore this either/or?
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Why is there a dichotomy here?
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I used to work with people who had Alzheimer’s, if you’ll permit me an anecdote. One of those in my care was an eldery history teacher in the advanced stages of the disease. She lived in a constant state of bewilderment and fear, unable to move, unable to remember anyone, unable to care for herself at all.
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She did love music. Music’s one of the last things to go. And I used to bring her Debussy and Chopin which are the best chill out tunes ever. I’d pop headphones on and she’d smile.
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But after a while she could no longer process the music. It was just noise. And she was in great pain. Her sister, who was responsible for her, had a consultation with the doctor. She had a choice: morphein or codeine. The morpheine would’ve eliminated the pain entirely and produced bliss. It would also hasten her death. The codeine would not eliminate the pain but dull it. She would live a few more months. The choice: codeine.
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I’m still angry about this cruelty dressed as kindness born of the lack of moral courage that will not acceopt that death visits everyone.
su,
There’s inequality in access to medical treatment, but that doesn’t mean someone dying due to a lack of treatment is the equivalent of murder.
In Rossiter’s case the reasons behind quality of life may be important, but if one discusses the case within the broader context of the legal right to die then those reasons become less relevant in that particular context.
It says that we’re more empathetic on issues related to legal freedom than we are on issues that require us to make personal sacrifices for others’ benefit.
Adrien @ 41: This. In spades. Of course Mr Rossiter shouldn’t be left to feel that his life is valueless because no-one can be bothered helping him to make it worthwhile. But in the end, it is possible that despite all technological interventions and talking computers and teh internetz and page-turning devices and top-quality care, that he might just want to go. And so he should, in his own time and in his own way. That’s why the decision matters, because life isn’t as simple as the either/or suggested by Billie @ 31.
M-H @43, you’ve summed up what I mean much more gracefully than I’ve mansged to. And yes, it’s not either/or. People need both the best possible care and the right to end their lives. I’ve seen what Adrien has described @ 41 occur as well.
There seems to be an argument here that perhaps if Mr. Rossiter had access to broadband he would no longer have the desire to end his life. Patronising, much?
Yes, I agree that implicit in the way this case is read is that we are more willing to accept that a disabled person’s existence may be less fulfilling than an abled person’s one. And I don’t think anybody’s disagreeing that people with disabilities face disgusting levels of disadvantage, particularly in terms of access to resources, both at the level of the everyday that abled body people can enjoy and take for granted, but also at the level that can improve their quality of life. But that’s ultimately a whole other issue from this case.
If you wish to ignore this case at an individual level–Mr Rossiter’s right to choose to end his life–and make it a championing of challenging the way we read disability, then what’s the difference between Mr. Rossiter’s right to reject a life in a disabled body, and a parent’s right to terminate a pregnancy based on a pre-natal diagnosis of a disability? Of course, at the most fundamental level these two choices have nothing in common and it is problematic to pretend they do, but both choices do buy into the myth that a disabled life is of less value, after all, if we are to follow through with the logic of some people on this thread.
But they are both choices that people should have a right to make without having their personal circumstances and reasons for making that decision read only or predominantly through a disability lens.
It’s worth noting that some pro-life groups here in WA have tried to get Mr. Rossiter to agree to meet with other quadriplegics who did believe they have meaningful lives… presumably because they’re all the same, of course.
I’ve been following this thread and I think I find it impossible to read about Christian Rossiter without projecting a little of my own biases. As much as I enjoy interacting on the internet – I’ve been to gigs with people I would not have otherwise met if it weren’t for this medium. I have learnt a lot from the political [and other] discourse here at LP, but if I had to live a life that was divorced from nature, where the ability to be on my own in the landscape were to be denied me, then I doubt I have the personal strength to want to live.
I know someone who lost two limbs in an accident and lives an amazing life, and I’m aware of how difficult it is for her to enjoy the freedom she does have – even something like being able to get petrol in your car determines where she can live – ie you have to find a place where someone is willing to serve you – I agree with the ‘ableist’ comments, though I’m also not that comfortable with the word, and I’m not sure why *ponders more biases*.
I recently went to a Vic Chesnutt/Victoria Williams gig..she has MS and he is very restricted in his movement, confined to a wheelchair – I suspect those gigs were probably unlikely to have happened if the music community themselves had not offered support to those two artists along the way. I completely agree that people should be given every opportunity to live an pursue their interests, but if nature, and particularly being alone in nature is something that has profound importance in your life, then I’m not sure that is possible, and that’s what I find myself thinking about every time I read about the way Christian Rossiter sustained his injuries.
Adrien @ 41 I fear that if I was in the same position as your ex-history teacher, my next of kin would select codeiene when my preference is clearly morphine.
I think people shy away from the fact that for every body there is a time to die, our reptilian brain centre struggles to keep us alive long after our conscious brain screams “ENOUGH!” and in these circumstances keeping people alive is immoral.
I personally support quadriplegics right to chose life or death and in the past worked actively to assist one build a meaningful life, and that is not cheap and requires the goodwill of many people. A person who is unable to ask for help or accept help gracefully is up sh*t creek!
billie, you can specify beforehand how you want to be treated. I had a look at this a couple of years ago, but have lost the detail. At my age short term memory does not last quite as well!
I think you have to get your GP to certify that you were of sound mind and a lawyer would also be necessary, but I imagine it’s different in different states. And then hope the people treating you actually know about your documented wishes. In Qld you can start with a standard form you can buy at a newsagent.
I gave up because it is impossible to foreshadow all possibilities and I’m fortunate to have layers of people around me who would make decisions in my interests as good and perhaps better than my own.
Having typed out and deleted about nine comments on the phrase Lauredhel used to link to Anna’s post, I’m just going to say, I agree with you, Anna.
Can somebody tell me whether people with anorexia are force-fed, and if so, on what legal grounds?
The saddest thing about this thread is it’s almost entirely devoid of any political understanding. It’s all about individual consciousness and personal concern and anecdotal personal responsibility with no understanding of the need to go from that to larger social responsibilities and priorities or how those much more significant issues might even be broached.
That isn’t true of either side, JillS. (Not that there are sides, as such, but still…)
Where’s the politics, Anna?
Share yours if you wish to, or go away.
Think of it another way. Most of us are able to take our own lives without assistance if we so choose – No matter what the law says. So it seems ironic that the the only people who are effectively denied the right to choose are the very people who are most likely to have a rational reason for wanting to die – Those who are too sick, frail or disabled to be able to kill themselves without assistance.
Perhaps it is also worth asking what would happen if we did make it legal to assist suicides for both rational and irrational reasons? I am talking about a system that had cooling off periods and other checks and balances to minimise pain and mess, avoid spur of the moment decisions and protect assistants from suspicion of murder.
I don’t claim to know much about suicide but I suspect that assited suicide would have potentail attractions to someone who has decided to commit suicide:
1. Pain minimization.
2. Protecting family, friends and others from the shock of finding the body and having to clean up the mess.
3. Protecting train drivers and others from the trauma of providing involuntary suicide assistance. (Where it often not clear that what was going on was suicide, not an accident that the train driver, station guard etc. may have prevented.)
4. Having a dramatic opportunity to make a call for help. (Some succesful suicides may actually be calls for help that got out of control.)
There is a risk that the availablity of assited suicide may prompt some people seek suicide when they may otherwise not even think about suicide or not have the drive to carry through with it themselves. However, there is still a real possibility that making it legal to assist people to want to die would reduce the number of irrational suicides.
I must remind myself,that,if it wasn’t for the fact,that out of body experiences,in a John C.Lilly way that is well and truly in one’s head is not like bungee jumping here at LP.That is,I have noticed only women care,and, not one male cared.I was having a out of body experience when I contributed what I contributed.Next time I will wait for Anne Summers,and where sunglasses as I type.
By the way, if you want to know one of the possible reasons that Palin was able to parlay an outrageous misrepresentation of health care reform into the premature demise of the proposal for advance care planning (a great loss, as pointed out in this piece at Shapely Prose then IMO you can consider the ableism of some of the commentators on health care rationing.
Peter Singer’s views on disability are somewhat controversial among people who either have a disability themselves or know a lot about it (I’m awarding myself a gold star for understatement there)and in particular his view that cognitive ability is a measure of the worth of the human life causes us great trepidation (another gold star for me).
He advocates objective measurement of the quality of life of people with disabilites but in his version of things, the arbiters of that quality are not PWD themselves but the able in body and mind. In writing about health care rationing, which he rightly pointed out already happened, he advocated the adoption of the QALY, the Quality Adjusted Life-Year, a measure which he describes like this:
So someone with quadriplegia has no input into this measure, it is a measure entirely based on the perception of others. I don’t think I need to point out why that is problematic.
In his piece he also uses the kind of logic worthy of a blog stoush to suggest that people with disabilites cannot both claim that their life is worth as much as those without disabilities and lobby for research funding into a cure for their disability:
How’s that for a wedge? Either we accept that we or our loved ones are worth x% of a person without a disability or we STFU about curing spinal cord injuries or MS etc etc.
I don’t know what Palin would have made of this piece or whether she even read it but I know that it was read by disability advocacy groups, who would not want Peter Singer’s methods of valuing their lives embraced in any new health care plan.
Jill S – The saddest thing about this thread is it’s almost entirely devoid of any political understanding. It’s all about individual consciousness and personal concern and anecdotal personal responsibility with no understanding of the need to go from that to larger social responsibilities and priorities or how those much more significant issues might even be broached.
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Well feel free to elucidate on the wider social responsibilities.
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I do have some modicum of poltical understanding. And I feel that in these matter politics should be mostly absent. It is a personal matter.
I find Singer very challenging and interesting. One of the key points of his utilitarianism, is that he doesn’t necessarily recognise the ‘sanctity of human life’. This can be seen in his writings from ‘Animal Liberation’ onwards and it’s what makes them so difficult and controversial. Sometimes he feels like someone who’s enormously cool and logical, but whose logic leads him to places I don’t want to go. His views on disability are one of those places, because of the sorts of presumptions that Su points out.
On the other hand I like his reminding us that there’s nothing inherently special in the species homo sapiens, except we belong to it and consequently privilege it. Bu that’s probably getting ot.
Thanks for that, Su. I read Singer’s piece and was actually quite shocked because it seems like such sloppy reasoning from someone who is usually a lot more intelligent than that. But perhaps his logic was sub-edited into that mess by the NYT? I don’t know.
The horrible conclusions that come from his logic are unacceptable, that’s a given, I think. But what’s worse is that he gets there with stupid logic. Try replacing disability with poverty, for instance. If the poor really are as equal as the rest of us then they should stop lobbying to relieve poverty. If they’re not then they should just admit that their lives are worth less than the not-poor. And since they’re clearly too biased, what their lives are really worth should be judged by people who aren’t poor themselves.
He’s right of course that we as a society make choices about what treatments we’ll pay for and what we believe is not worth the money. But the whole QALY thing seems like an irrelevant and incoherent distraction from that point.
Anna and su, John Ralston Saul who I regard as an essayist rather than as a philosopher reckons we need to use 6 “qualities” in our lives, in alphabetical order, common sense, ethics, imagination, intuition, memory, and reason (see his On Equilibrium). If we privilege one to the exclusion of others the results are often disastrous.
If I started with a clean sheet of paper, I’d have emotion and values on it. I think his schema is a bit of a muddle, but he has many insights and his essay on reason is salutary to say the least.
In my own scheme of things, while we are separate and individual we are ontologically social beings, so species solidarity is part of who and what we are. So I have no trouble in valuing human life, to do otherwise belies our being.
At the same time some extra-human valuation may see us as worthless or of no more value than any other species. I think that Singer is attempting such a detached valuation which must be from a non human position. Which puts him in a ridiculous and impossible situation.
Whereas if we start from the where we are we can easily build a position of solidarity with other species. But it does include a notion of pests, of which we may well be one.
I’d better nick off before a real philosopher comes along and ties me up in knots.
I read Singer as saying that we i.e our society had pushed PWD into a bind – they had to either claim that their quality of life was bad and therefore under QALY it didn’t count as much, or they had to claim that their life really as valuable to them as a TAB’s life is to her, so they didn’t have any claim on any extra assistance. I thought Singer was saying that by pursuing this line of thinking we had put PWD in an impossible position, and that doing this was in itself a bad thing to do. That is, we should not be forcing PWD to make this kind of choice at all.
Regarding Rossiter’s choices, I can’t help thinking of Hobbes and the sinking ship definition of freedom:
It’s a very thin definition of freedom, but it’s the one that has been imposed on Rossiter.
All that is being pointed out is that that desire does not occur in a vacuum, but in the context of rampant and virulent ableism, and that as a result, this legal decision reinforces that ableism. (Man says ‘my life is not worth living because I’m disabled’. Court says ‘alright, although we have always said life is worth preserving, we’ll acknowledge that in the context of disability, you’re right. Your life is not worth living.’ All of which obscures a social and political context that privileges those thereby deemed ‘able-bodied’ by disabling particular bodies.)
I think Wildly Parenthetical’s comment sums it up and part of the problem is that we do not seem to do high-needs care very well in this country, despite the fact that we’re a first world country. And part of the problem is that we have had a neoliberal “religion” of the free market and “competition”. The plight of brain-injured younger people for instance, who are stuck in aged care homes with nothing to do, has been on record for some time. Another part of the problem is, in addition to the market-forces system, you get funded according to who is available to sue. This means that people like my husband’s niece and nephew who were born profoundly disabled have few resources, even if they have the same needs.
Brian, I love JRS, but “common sense” is one of the most abused terms in discursive life. It usually boils down to “my unexamined truisms”. Remember that email forward that’s always circulating the globe about the Death of Common Sense? *reaches for sick bucket*
Death of Common Sense
And the version that is claimed to be the original. It’s even more sickly than the version on the ABC that I linked to above.
The Death of Common Sense
Helen @ 63, I’d agree, but so I suspect does JRS. It’s while since I’ve read him, but his “qualities” seem a bit of a grab bag and don’t seem to be all of a piece in some way.
My main caution would be against relying on reason alone.
This case hasn’t made it to Austlii yet, so I’ll just have to settle for such facts as I can find – Perth Now’s report seems as good as any:
In short: man decides ‘my life is not worth living’. Man asks his care providers to stop feeding him. Care provider, worried by the prospect of possible criminal liability seeks a court ruling.
There are a few other stipulations in Chief Justice Martin’s decision, such as that the case was not about the right to life or the right to die – it was about whether Brightwater Care Group would be criminally responsible if it does what Christian Rossiter wants. Verballing the judge to introduce an ableist sub-text isn’t a great foundation for an argument. Great way to keep a pointless brawl going though.
Fine @3: “And Ariane is right when she writes that all because he won the right to die, doesn’t mean he’ll necessarily invoke it.”
Allan @5: “I read in today’s SMH that Mr Rossiter wishes to consult further with his medical advisers before making any decision so he may indeed not exercise that right.”
This may be at a bit of a tangent, but it seems that in a lot of difficult circumstances, just knowing that you have a choice makes the difficulties easier to bear.
On an even wider tangent, someone once told me a story about someone giving his nephew (who was just starting a business) a locked box, which supposedly contained a gold bar. The story went that he should NOT open the box, except if all hope was lost with his business venture. He should pass it on to someone else worthy when he died.
The nephew never opened the box, and his business ultimately thrived without assistance from the gold bar. He had the courage to keep trying when the going got rough, because he thought he had a Plan B. For all it mattered, the box could have contained a brick?
What does this have to do with “right to die” for that unhappy man?
Most of us know, subconsciously at least, that we have the ability to kill ourselves if life gets to be a real pain, but most people do not exercise that choice. When you are a quadraplegic, that choice is taken away. It has been restored.
Maybe his choice will not be exercised, if he can find a purpose for his life?
QALY is a measurement that finds its most effective use by the British NICE in measuring whether new drugs should be paid for by their public health system.
It’s mostly in the media their for its use in approving (or not) new cancer drugs – effectively NICE uses it to ask whether the public purse should cough up for a new cancer treatment that, say, costs $40,000 a course when the evidence says the treatment leads to a couple of extra months of progression free survival – when existing treatments, say, cost a quarter of that but without those potential benefits.
QALY is a controversial measure in all patient groups, but cancer treatments have been grabbing the headlines in the UK for the past couple of years – helped along, arguably, by some creative astroturfing from pharma. I’m not as certain of its use and acceptance in other patient groups, though.
No healthcare rationing system is going to be popular, though – it will only get worse as drug costs continue rise as biologicals become the standard of care – and they do, simply, just cost more.
I understand Mr Rossiter’s court case was about not being force-fed, and health care workers not being forced to force-feed him. As Gummo says, not the same at all as a court decision implying that the lives of people with disabilities are less precious than the lives of people without disabilities.
I had hoped that we were no longer brawling but using a horrible disagreement (and it isn’t any of my business but I hope it is a temporary one) as a jumping off point to discuss issues that don’t get much play on general political blogs. That was the spirit in which I was contributing anyway. WP’s point that this case exists in a broader context of ableism and inadequate services remains and I think your hyper-literal reading and characterisation of her words a “verballing” doesn’t do her arguments justice.
Other groups have used this case, which is not about voluntary euthanasia, to advance arguments in that vein, I think it is fine to do that, and to also consider the broader context of ableism in which PWD live.
John Ralston Saul who I regard as an essayist
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I’m astonished the man is taken seriously. Voltaire’s Bastards, the thesis of which I agree with, has to be one the sloppiest books I ever bought. I seriously think he owes me my money back.
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Just sayin’.
John Ralston Saul is fabulous.
I was amazed to get invited to hear him speak once at a totally rapt overflowing Sydney Town Hall gathering. In the flesh he is even more sensational.
The guy has a huge readership in Australia, by all accounts. His latest, from a few years ago, on globalisation, is a veritable treasure trove.
I do love a polymath.
@ Deborah:
The QALY measure is not currently used in the US as I understand it and Singer was advocating their adoption so I’m not sure I agree with your interpretation. I do view his writings with a particularly jaundiced eye though, I may have missed something.
I think/hope you may be right, Deborah. I’m always much more willing to blame sloppy sub-editing than poor reasoning when it comes to people as smart as Singer.
#73 – It’s off topic so I won;t elaborate. But I could take Voltaire’s Bastards apart section by section and show you what a true piece of shit it is. It sounds good but it’s stuffed with straw men and unsubstantiated outrageous assertions.
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It also should’ve properly been called Richelieu’s Bastards. What did François-Marie ever do to deserve that?
I’m inclined to read him sympathetically, because he works on walking the incredibly fine line between saying that it is morally permissible to abort fetuses (and much more controversially, infants up to about four weeks old, I think) with disabilities, and valuing people with disabilities as full human beings. His stance seems to be that once a person is in existence, then we ought to do everything possible to make that person’s life a good life. But it’s a very fine line to draw, and it’s easy to make missteps, and even easier to be misunderstood.
Looking again at Singer’s article, however, I agree that he points out the logical bind, but he doesn’t then take the next step and say that it is immoral to force PWD into this bind. So, the reading I gave above is a “possible” reading rather than a “probable” reading of what he was saying.
@Brian, Adrien, BAT.
If the White House really needs a first philosopher, then I would be happier with Martha Nussbaum than Singer. Not that I know a lot about her work, I’ve only read snippets on the net about the Capabilities theory of social justice and how she extends it to propose changes in the way society interacts with people who have disabilities. Deborah, do you know her work?
First Philsopher?
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Interesting. But in the current cultural climate of the United States I’d be disinclined to support that.
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Here of course Kevvie is the first philosopher.
I’m a huge fan of Martha Nussbaum, su, but it’s an infinite pie after all and John Ralston Saul’s contribution is equally valuable on more levels than can be justly summarised.
Nussbaum also uses her capabilities theory to talk about our responsibility to non-human species, which is also very interesting. If you dig into the archives of ‘The Philosopher’s Zone’ on Radio National, you’ll find an interview with her.
Thanks Fine, I’ll have a look.
Yes, I do like Martha Nussbaum’s work. I’m very taken by Iris Marion Young’s work too, but sadly, she died a few years ago aged just 57. I particularly like the way that Nussbaum explicitly addresses areas that more traditional forms of lberalism and contract theory seem to simply not see, such as disability. White House philosopher? I agree – Nussbaum would be excellent.
The advocates of the ‘ableism’ argument on this thread are kind of using it as if it trumps all other arguments. So if you comment on the Rossiter case from the perspective of individual autonomy, it must only be done from within perspective of ableism.
Comment 31 says “we participate in ableism, because we participate in refusing to acknowledge how the ableism of the context has made no other choice possible for Christian Rossiter …it means something that the world is more willing to accede to the request of a person with disabilities to die than it is to actually grant them those things they want in order to live the life they want”. But the link to the article in the West Australian doesn’t give any indication that anyone could ever possibly provide the things that would give Rossiter the life he wants. There are other people in situations similar to his who haven’t asked to be allowed to die, so I guess it is a thought out choice Rossiter has made based on how he feels about his situation.
The comment that “we have all participated in that [we] have ensured that the world is built for and protects only those who have particular kinds of bodies” is surely wrong – anyone who can remember/see how the situation has changed in the last 40 years would know that there is now much more concern and resources devoted to helping people with disabilities live the life they want to.
As others have pointed out we are all commenting on the basis of almost no information on this case. I have no idea what living in a Brightwater Home is like, so I wonder if there is any evidence to support a statement like “having pushed him into the corner, through neglect, derogation and disenfranchisement.”
I only remember that the CEO of Brightwater is the current West Australian of the Year – it says on the australianoftheyear.org.au site that she is ” a champion for people of all ages who require a high level of ongoing support”. It’s fine to criticise the level of care Rossiter is getting if you do really have evidence of neglect, but the fact that he can’t stand living within the physical restrictions of his disability isn’t evidence that his care is the reason for his wish to die.
su – if looking at the available facts to check whether they match hyperbole is ‘hyper-literalism’ then fine – I’m hyper-literal. Too much so to be convinced by any argument that begins by mis-stating its factual basis. But evidently, that’s just me.
Except I don’t believe anyone is really talking about the judgement itself, WP was trying to avoid it for reasons she expressed upthread. We were just asking the question “how did he get to this point”. Not in order to assert that he must accept x,y,z, interventions before he gets to exercise his rights but because in a society which explicitly undervalues the lives of disabled people and in a context of an inadequate and frankly failing disability service sector then the “how” is a crucial question to ask.
If we genuinely want to maximize the quality of life of PWD then the case of someone whose quality of life is poor (his lawyer has asserted this so I’m not verballing anyone) should raise the red flag because perhaps some of those quality of life issues have nothing to do with the disability, but are the result of societal and structural factors that disable someone to a greater extent than need be. I am sure you already know about this and the social model of disability but a lot of comments upthread determinedly paint quality of life issues in a medical model context, a way of looking at disability that is out of date, delivers poor outcomes and is no longer accepted as appropriate by government.
Russell I don’t believe you are arguing in good faith. At the very least you are woefully ignorant. The federal government is currently implementing a long term plan to get people who have high needs and are under the age of 65 out of nursing homes because they recognize that that is not an appropriate placement for them. Nursing homes are not equipped to provide the range of opportunities that we all take for granted as the basis of a “normal” life.” They are not meant to be a permanent home and yet people live out their entire lives in nursing homes, children as young as ten are placed there. That is a horrible situation, regardless of how good the facility is as a nursing home.
Gummo Trotsky, I can’t seriously believe that someone commenting on a progressive website assumes that the politics of a court decision is ever fully captured by the words that the judge has said. My point was to make explicit the way that the decision functions, given the context within which it occurs. And of course, it’s great that you decided the point at which I got frustrated by multiple misreadings, and went with the most basic articulation of my point, captured the complexity of my entire argument. Very fair. My point, all the way along, is that there’s ableism implicitly at work in the world – just as there’s racism hovering behind, for example, the NT Intervention, or sexism behind women being paid less than men. Why is it that attempting to draw out how ableism works is considered to be misrepresenting? (And thanks, su, for intervening in that).
For those who are wondering if Brightwater is a haven of joy and invigorating entertainment, I’ll point you to the comment on the thread at HAT, where an anonymous commenter describes it. I am increasingly surprised by people’s commitment to believing that Rossiter has been given access to everything he might have wanted to, in the absence of any other ‘proof’. I don’t understand where that hope comes from, given that we live in a context that isolates and disables people with ‘impairments’ on a regular basis. Why would we assume that the world offered Rossiter everything and he still decided to die? It goes against the majority of experiences of those with severe disabilities, so there’s definitely something going on in the insistence that ‘we can’t know’ meaning that we should assume the best!
To the discussion about Singer, I’d suggest the following as reading: http://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html And there are, in fact, many critical disability theorists, if we’re going to head in that direction; it might be worth actually engaging with thinkers who have considered this stuff in detail… many of whom have lived it, as well. And yes, many have discussed euthanasia issues in detail.
To those who think that this entire argument has been whipped up out of nothingness, I’d ask you to pause for a moment, and consider that perhaps there are things about your life which mean that this doesn’t feel proximate enough to be an issue. That doesn’t mean there isn’t an issue. We are now, through long hard work by anti-racist people and feminists, more sensitive to the way in which our society privileges whiteness and masculinity. The examination of disability is a lot newer, and doesn’t touch many people personally until they’re older; perhaps we could trust those with disabilities to be explicating a truth that we cannot perceive ourselves, instead of treating them as if they’re making fuss over nothing. We also might want to keep from assuming that we as a society are doing the right thing by people with disabilities, or that when people with disabilities seek to die, it couldn’t be because we as a society have let him/her down.
For clarity, I’d also like to say that I missed this on my first run through, but Anna @ 9, Lauredhel never characterised you as ‘supporting killing off the disabled as long as it’s quick,’ which makes it sound like she accused you of being eugenicist or something. She said ‘it’s not that great, because hey, we should be knocking him off quicker,’ which in context I read as saying that your primary concern was not the fact that he wanted to die, or the situation that prompted that (i.e., the ableism of his context which has made his life not worth living) but how quickly he’d be able to fulfill his desire. Her point, to me, seemed to be that everyone was calling this a win for euthanasia rights, without thinking about the loss or concealing of disability rights. I understand being upset at being mischaracterised, but I think you might have either misread or misrepresented Lauredhel’s characterisation of your argument. I guess what I mean by returning to this is that, I agree with Desipis @34 that there are multiple discussions to be had; but I disagree that they can be separated out in quite the way zie suggests, and I think that that very separation is characteristic of the way those with disabilities are marginalised: in debate, in how such issues are framed, and in the life of the body politic.
As a side note, I’d like to point out that I’m representing my own reading of the situation here, and am not Lauredhel’s spokesperson. Nor am I a ‘flying monkey’. But thanks, LP, I don’t think I’ll be back.
Please do be back, WP!
I’d like everyone here to consider that everyone here is only a stroke (and how common are they), a road accident or an unexpected medical condition away from joining the ranks of people with disabilities. Or their carers.
Gummo T
“Verballing the judge to introduce an ableist sub-text isn’t a great foundation for an argument.”
Where to start, silly billy Gummo? The whole society is ableist. The ableist paradigm suffuses all. If you can’t recognise that, then you are unfortunately a very silly person.
Harrumph.
WP, I second the call for you to come back. We have a different style of debate at LP and I understand that it wouldn’t be considered a “safe space” in many people’s definition of the word. So I get that it may be upsetting at times, but I wouldn’t want to see you go away permanently.
And I think I know why you’re using the term “flying monkey” – let me make it very clear that no-one sees you as one. The flying monkey term describes people who pile on in an unthinking “yeah, I agree, you’re crap” way. No-one would see the time and thought you’ve put into this thread and say that that described you.
So please come back often.
Another good post for people to read.
“Russell I don’t believe you are arguing in good faith.”
Because no one could have a view different from your own? I read the article TigTog linked to and the intelligent and aware Rossiter says that: “I’m a prisoner in my own body. I can’t even eat and drink…I can’t scratch any itch, I can’t brush my teeth, I can’t go to the toilet ….” A man who “considered rock climbing one of his great passions, Christian is now confined to a bed, reliant on nursing care and six-hourly doses of painkillers”.
It seems from this thread that you saying that what Rossiter has decided isn’t valid because he may feel differently if his situation could be made better. Based on that article, I disagree. He may change his mind, but he seems perfectly able to make a realistic assessment of his own hope of enjoying life.
It’s good in a discussion of this issue to raise the ableism dimension – it overlaps with the autonomy aspect, but it doesn’t necessarily over-ride it.
Russell: “it doesn’t necessarily over-ride it.”
And no one has said that it does which is why I call your arguments bad faith. Choices do not occur in a vacuum, we are looking at constraints that limit the range of choices available. These constraints are severe for PWD.
On Singer, I read his ‘Practical Ethics’ a few years ago and found it thought-provoking, compelling in some respects and unacceptable in others. However, I’ve since read some pretty devastating critiques of his work, and it now seems to me that his work is actually quite superficial and that sloppy arguments are more of a method of his, rather than an aberration. His recent work on poverty relief, although I agreed with his overall agenda, I found very lazily argued and unconvincing.
This critique by Peter Berkowitz really hones in on the flaws in Singer’s thinking. Yes, Berkowitz is a conservative, but that doesn’t reduce the strength of his critique one iota, in my view.
I apologise if this seems slightly off-topic, but the merits of Singer do seem relevant to the discussion.
Su, I wrote “It’s good in a discussion of this issue to raise the ableism dimension – it overlaps with the autonomy aspect, but it doesn’t necessarily over-ride it.”
and you replied “And no one has said that it does which is why I call your arguments bad faith”
Please read this again: “the fact that you discussed your concern that he have access to the best possible option for death first, rather than situating his desire for death, and the court’s acceding to it, in the context of rampant ableism, isn’t just hurtful (and it’s pretty dangerous, methinks, to characterise Lauredhel or myself as hurt when what we’re trying to point out is that this is politically problematic), it reinforces that same dynamic”
It seems to me that we were being told to view the autonomy aspect “in the context of” the ableism perspective.
There’s a lot of this too: “there’s an ethics and a politics to what we write about: we contribute to, or resist, dominant ways of talking about things” ie you’re with we abliests or against us.
Similarly: “… because you saw as most important or significant for discussion that this was a win for the movement toward euthanasia, and not that this very decision obscures and sustains the intense ableism of contemporary culture … in the end, you are participating in the same kinds of politics as the court”
“what appears reasonable, and liberal, and progressive is shaped by the same problematic erasure of disability”
People might read this stuff differently, but I read it as ‘our perspective is the primary one here, the autonomy aspect should be seen through the lens of ableism’.
I also think the ableist proponents jumped to some unsubstantiated claims about how Rossiter feels about his life and how he is being cared for – but that’s another point.
I am very uncomfortable with the second-guessing, amounting to dismissal, of what Mr Rossiter has said. That seems to me like what you do with people who you think aren’t capable of making their own decisions. Why is he not to be accorded the simple courtesy of listening to what he’s got to say? I dont see the slightest contradiction between on the one hand being dismayed that he doesn’t want to live, and supporting his request to be permitted to refuse food. Why should anyone be force-fed? It is an act of astonishing physical violation tantamount to torture, and not one that an able-bodied person intending to starve himself to death would have inflicted on him as a matter of course.
Yes Laura.
And this is almost inevitable when the case of an individual is kicked around to make wider points. Like a “political football”. So many assumptions about Mr Rossiter and how he views his life.
And in other contexts these protagonists might well decry someone (else) being “judgemental”.
Golly.
It happens so often. 80% of Australians were convinced they knew whether Lindy Chamberlain had (or had not) murdered her baby. None had been in the courtroom to hear the evidence. None had been at the camping ground on the night in question. So much certainty, with such a flimsy basis.
That is the same argument that is used whenever feminists want to discuss matters that constrain women’s actions – we are told that we are “denying them agency” by “erasing” the womens voices. Whenever we critique the society in which those women have their choices limited we are told we are patronising them.
Can you point to a single person in this thread who has questioned his right to refuse food?
Imagine for a moment what it is like for a PWD to see so much energy expended upon your right not to keep living, when it is a huge struggle to acquire the resources to live and that struggle does not raise the same degree of concern. Actually you don’t need to imagine you can read about it in WP’s link. Here’s a quote from that piece but it is really better to read the whole article
Quite true Ambigulous.
We can be equally sure that on the one hand, only Lindy Chamberlain herself knows whether or not she killed her baby, and on the other that only Christian Rossiter himself knows whether or not his life is worth living.
Su – PWD are primarily oppressed by their disability. That is what primarily restricts and informs their choices. An able-bodied person is, after all, more or less able to commit suicide under their own steam.
And yet it is all fine and dandy to use his case to make the wider point for voluntary euthanasia? We must not speak about the appalling inequities that contribute to human misery of the worst kind for PWD but we can, of course, speak about their right to end of life choices. Why is that?
FDB:”PWD are primarily oppressed by their disability”
PWD disagree. That is the medical model. Old, discredited, discriminatory.
No. Neither of those things is OK when it’s at the expense of acknowledging Mr Rossiter’s voice. It’s one thing to say it’s good that Mr Rossiter’s right to make his own choice has been won; another to say this is great that disabled people may now kill themselves. Just as it’s one thing to question the circumstance that may have lead to his choice and another to imply that it’s not a good thing that he’s at least allowed to make it.
Again, whether or not PWD are “primarily” oppressed by their disability, they are to some extent oppressed by it, and for some individuals this may be deemed too much, no matter how much we improve the way we provide for PWD in general. Because we are dealing with people, who will each have different responses to their situations.
I agree with that, but I fail to see who here has made that implication.
Well, it’s what my entire 1300 word post was about. Quite a lot of the upset in this particular debate is due to some people not seeing the distinction – or at least not seeing it in their opponent’s words.
‘Robert was taken to the Austin Hospital yesterday with another bout of bedsores. It was only last August that he was allowed up after two years in bed. Mum thinks he may have a complete breakdown if his general health doesn’t improve, and I must say when I visited him on Monday he was almost catatonic with despair. … All he can do is sit there, lie there, thinking, always thinking, becoming more and more depressed. Thought is all that is available to him — suffering petrified by virtual incorporeality. And it is terrible.
And meanwhile the rest of us go on criticising each other and bemoaning our lot because our job doesn’t pay enough or our lover forgets to telephone us.
Terrible not even to be able to destroy oneself.’
From the journal of my friend Peter Rose, dated 1980 and quoted in Rose Boys, his memoir of his brother Robert, former Collingwood player and Victorian state cricketer, who had been rendered quadriplegic in a car accident six years earlier. In 1980, when this entry was written, Robert was 28 and Peter 25. Robert died in 1999, when he was 47, of complications following surgery from a bowel obstruction: ‘pneumonia, septicaemia, renal failure, golden staph and two twisted bowels.’
Pavlov’s Cat, I wasn’t saying that having a disability is not painful, difficult and dangerous and the quote that FDB was responding to was written by a woman who experiences all of those aspects of a physical disability. Her point, I believe, was that over and above those difficulties, there are the disabling effects of a society which, in the way it responds or doesn’t respond to her, adds another layer of difficulty and oppression that constrains choice. The point of a social model is not to say that the physical is not important but to draw attention to those other layers of disability that do not spring from the condition and a sweeping statement that all people with disabilities are primarily oppressed by their disability is simply not correct.
I thought I had been careful about how I have expressed myself, but given the number of people who have construed that I think the judgement was wrong or who believe that a discussion about how little support there is for people with high needs erases Mr Rossiter’s experience, perhaps not.
I am sorry for your friend. This isn’t an abstract issue for me either, it is personal and that is perhaps not the best circumstance in which to make a comment on this case.
With due respect Su, I don’t think that’s the case. But I’d ask everyone here to try and give the best possible reading to everyone’s comments, whether you agree with them or not. I don’t think anyone here is arguing that it’s either/or, and anyone who thinks it is should try and stop doing that.
I think this thread has been quite a reasonable one, given the subject matter. Please continue…
It seems to me very true that Mr. Rossiter’s decision has been made within in a context in which people with a disability are treated very shoddily. Maybe if Anna’s initial post had expressed that explicitly this stoush may not have happened.
But it’s also true that Mr. Rossiter has asked simply for the right to kill himself; a right which able-bodied people have and which often, sadly, have used. I bet there’s many people on this thread have had people they’ve known well take their own life even though objectively they may have had everything to live for. I know that’s the case for me. It maybe a great relief to Mr. Rossiter that he can choose this if he feels he has to. And to me this is the crux of the matter.
Like Laura, I feel uncomfortable second guessing Mr. Rossiter’s needs. I read a story in which it said his hobbies were rock-climbing and bush-walking, so he maybe someone who simply can’t adapt to the way his circumstances have changed, no matter what sort of support he’s offered.
Anna wrote: “No. Neither of those things is OK when it’s at the expense of acknowledging Mr Rossiter’s voice.”
Yes, that’s what I meant. Thank you. I don’t believe it’s OK for any “side” to use this case as a “football”.
Sorry, su. I wasn’t aiming a barb at you.
all the best….
Fine:
“Rossiter has asked simply for the right to kill himself; a right which able-bodied people have and which often, sadly, have used. I bet there’s many people on this thread have had people they’ve known well take their own life even though objectively they may have had everything to live for. I know that’s the case for me. It maybe a great relief to Mr. Rossiter that he can choose this if he feels he has to. And to me this is the crux of the matter.”
That’s exactly what I meant at #100, and nothing more. If I gave the impression I’m not aware of the extra obstacles to a good life that a well-run society could and should continue to help remove for PWD, then apologies. I too have fairly intimate experience with this, and tend to take it as a given.