Please read the note at the end of this post before commenting. This is NOT a thread for euthanasia-law debate.
I’ve been trying and trying for many days to write about the Christian Rossiter “right to die” case, and I just haven’t managed more than an incoherent wargle. A chat with rb has convinced me that that’s better than nothing, so here it is.
If you haven’t been following along, that’s probably because all of this has been happening in Western Australia. Christian Rossiter is a forty-something year old bloke who used to climb rocks and cycle and do all sorts of physically active stuff. He now has a high spinal injury, and can no longer do those things.
So what have we, as a society, done for him? Set him up with communication devices such as a internet-enabled computer he can operate (he has talked about not being able to turn the pages of a newspaper)? Offered him opportunities for social inclusion, to the fullest extent that he can manage it? Equipped his home and supplied home nursing care so that he could live in his community and retain his social context? Provided any sort of life enrichment whatsoever?
No. We shoved him in a nursing room, in front of a television set. Oh, but it’s cable, so that’s alright, eh? We did all we could!
Now he wants to die. He’s been fighting for his right to refuse nutrition, because he can’t handle being shoved in a bed in a nursing home with nothing but Foxtel for company. Today, he won that right.
Everyone’s talking about this being a “good outcome”, a “win”. Apart from the folks who say that it’s not that great, because hey, we should be knocking him off quicker. They’re all talking about how obviously they would choose euthanasia too, if they couldn’t walk or eat or blow their nose. Because such a life could never be worth living. Because such a person is valueless.
All I can come up with is gurgles of rage and horror.
I have not yet seen ONE PERSON question his treatment, question the way we as a society have failed him – NOT in our lack of provision of a way to quickly bow out, but in our COMPLETE failure to support him in finding out whether maybe, just maybe his life could be worth living.
NOT ONE.
And I am PISSED. And sad. And horrified.
Now, perhaps if all of that equipment and opportunity and support had been offered, he might still decide to die. And that should be his right.
Or maybe he wouldn’t have made that decision.
Why haven’t we so much as given him a chance?
~~~
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[Note, if you hadn’t figured this out already: I am going to moderate the fuck out of this thread. If all you have to talk about is whether or not advance directives or euthanasia should be legalised, go do it somewhere else. If you can’t figure out that this is not what this post is about, read it again till you do.
There’s no shortage of places to talk about the right to die, pro and con. There’s a critical shortage of places talking about the right to have a life.]
Categories: Miscellaneous
Are we all still here? 
Otterday and Open Thread 
So my plans for writing today didn’t quite work out 
Otterday! And Open Thread 
Hoyden About Town 
Thanks for writing this, Lauredhel. I don’t know the case and I can’t bring myself to read up about it because it’s too close to home – I’m bedridden myself, although not paralysed – but I believe your point is entirely correct. There are ventilated quadriplegics in the community living meaningful and useful lives. This man is essentially being incarcerated for the heinous “crime” of being disabled.
This is another reason why we need the National Disability Insurance Scheme, so things like appropriate care at home would be this man’s right, instead of something he would have to beg and fight for.
r
.-= Ricky Buchanan´s last blog ..April, 2004 – A Typical Day =-.
Ricky: I’d need to know a lot more about the proposed NDIS before believing that it will help in this sort of situation (or help at all) – right now, none of the rhetoric, or its sources, have me convinced. Do you have any info?
Yes, and I am guilty. My pre-occupation is with giving people the right to choose (lots of personal experience, both positive and negative on this), so I didn’t consider what brought him to the point to ask for the right to die. I was actually hoping that having been given the option, he may choose not to exercise it, but that doesn’t really address your point.
But you are utterly correct – in my defense, in a case I had a “friend of a friend” connection to, I was horrified to find that he was allowed to choose to switch off the ventilator only a few months after his accident. He hadn’t even had time for his brain to recover from the injury, let alone look at options for living a worthwhile life. I sincerely hope his medical advice was genuine and had no shade of “such a life is not worth living”, but I am sadly skeptical.
Disagree with me.
Be pissed off.
But do not imply that I argued that anyone should be “knocked off” quickly or otherwise.
Anna, over at LP you wrote:
I am finding it hard to read this as anything other than an argument that he should be given drugs to provide a more “good way to die” than starvation.
I can totally understand him wanting to end a life of sitting in front of a TV with little human interaction. But that life situation should not be his only option other than death. Why doesn’t he have any of the assistance equipment that is available to help people with paralysis? Why on earth doesn’t he have a computer so he can be involved in arguments on the Internet?
Thanks for putting into words what I couldn’t in an argument with a man who had been my boyfriend at the time.
I know for a fact that care for severely disabled people sucks donkey dick in this country. I’ve seen it in action with my nephew. My sister doesn’t trust anyone to look after her son properly, so she and her husband do it in shifts, and she’s paid for the two days she isn’t working. It took a LOT of complaining and letter writing and wrangling just to get that deal.
I was at a meeting a while ago with representatives from state government. They just. don’t. fucking. CARE. It broke my heart.
updating with edited-in note:
@Lauredhel: I don’t know that the NDIS would help, it’s just an idea at the moment, I believe, with no firm statistics or numbers behind it. But levelling the playing field so that you get the same care whether you’re injured in a road accident or at work or somewhere private or are born disabled or become disabled through other means seems like the right thing to do. The patchwork mess we have now where somebody gets decent care via TAC/WorkCover but the same person injured and not under TAC/WorkCover gets nearly nothing is not right.
And I have to believe it can get better. And worst case, at least if the same crap level of treatment is suffered by everybody then more people will work towards making it better
@Ariane: I believe in theory for the right the choose death if that’s what somebody wishes and truly wants, but the world is so imperfect that so many extrinsic things bring people to wish death when there are other solutions so I don’t think there’s any way really to introduce such a law safely in the current world. In a perfect world, sure.
For myself, I have a pact with people I trust that will help me if that situation ever comes up and they agree that death IS the best option and there are no other options and I am not just asking because of depression or other reasons which may be overcome with time. That’s the best I can do for myself. I worry about the others involved though – if it came to that and they helped me, I believe they could be liable for prosecution and I hate that they would have to risk that.
But on the other hand I have seen so many people get away with murdering people with severe disabilities that I can’t see any way to reduce the liability to prosecution without also increasing the risk of people getting away with murder. Catch-22.
The only solution I believe in and feel I can ethically work towards at this point is to improve the situations – such as crap disability care and crap mental health care – that bring people to want to die unnecessarily. If I ever feel that those things and all the other “secondary” issues are sufficiently solved, then I would feel OK working for a pro-euthenasia cause directly. If this happened in my lifetime though, I’d be shocked. There’s too much “You’re a burden on society” feeling towards people who can’t work – that takes a long time to go away, if it ever will.
Ricky
I couldn’t think of anything to say that wasn’t already said, and better, by William Peace over at Bad Cripple. There’s a long way to go in the care of disabled and/or ill people before we should start thinking about legal or assisted suicide.
My entire post was about what Mr Rossiter wants. Even the part you’ve quoted is talking about what he “sees this as his best option”. I agree with pretty much everything that Lauredhel wrote here, but she has taken a different tangent than I did in mine, due mostly I guess to a difference in the issues we both choose to blog about.
But to imply that I said that anyone should be knocked off is at best a stupid and shallow reading of what I wrote. Given that I know Lauredhel is neither of those things, then I can’t give her the benefit of that particular doubt. She understands my post, she just chose to misrepresent it to support a completely different argument – even though it is one that I happen to actually agree with.
Anna: I, like tigtog, am failing to see the misrepresentation. Along with her quote at 8, there is:
The bottom line, however, is that this is not about you. It is about the commenters in that thread (comments 1, 7, 8, 9, 17, 20 so far), and about all the other blog posts I’ve read about this case, and about all the articles in The West (which I tried to link to but couldn’t, because they’ve complete rearranged their site and the articles I’ve been reading of late are accessible by neither site search nor Google) and elsewhere.
This isn’t about any one particular person not happening to write about one particular thing. This is about the virtually complete absence in the discourse around this case of any consideration of the issues I raised in paragraph 3.
Which is what the rest of this thread will be about.
Put yourself in my shoes, have someone accuse you of wanting to knock people off then tell me I should be quiet because it’s not about me.
There is no debate so important that it makes it OK to do that.
I can understand Anna Winter’s anger. Lauredhel talks about the hollowness of celebrating Christian Rossiter’s right to die when it comes in the context his being denied a worthwhile life; to me, Anna seems to be talking about the hollowness of celebrating it when the death he’s “won” is one that is slow and painful.
They seem like the same coin to me – both imply rage at a void of dignity, born out of so completely decreeing a person’s life as intolerable, that we (can’t? exempt ourselves from? don’t dare?) imagine how we might make it less so. Even his death, leaving him to starve, shows the same abandonment that characterises his care in life – or, more in line with Lauredhel’s post, that such a death can be trumpeted as a win for Christian demonstrates the level of abandonment we’re willing to tolerate in life.
Personally, I have the same confession as Ariane. I’ve concentrated more on the right to die, without paying enough attention to what might be done to make life a better choice. Maybe it’s too easy to see the latter as conceding to the “life at any cost” movement, or maybe that’s just an excuse.
@SunlessNick
I can too. While I stand by my critique of the phrase I highlighted above, you are correct that her post was not celebratory in any way and concerned Christian’s personal dignity.
The comments on that thread are far more the problem than Anna’s original post.
How about putting yourself in the shoes of all the people like Rossiter who are forced into inadequate living conditions due to their disability and feel there is nothing else to do then BUT die?
Yeah, ok, your feelings are hurt, but Lauredhel is pointing out that the entire conversation completely ignores this. And no, it’s not because lauredhel has “a different focus.” EVERYONE should be acknowledging this. Everyone. And yet no one does, except the “different focus” folk who nobody else LISTENS to.
And the reason Mr. Rossiter is in this situation is PRECISELY BECAUSE everybody ignores lauredhel’s point in these conversations. Nobody thought it was necessary to pursue these things, because nobody else ever talks about it.
You may feel hurt, but consider that Lauredhel was making a broad, overall point of which you were only one participant. And consider this is literally LIFE OR DEATH.
This is the result of systemic devaluation of disability in society. People assume disabled life is not worth living. That disabled people are rightly prevented from doing anything and it is worthless to try to help them achieve things they need help to achieve. It never even gets to a point of talking about “rational costs” because people write off the idea of ANY cost from the start.
Yes, that is just slightly upsetting when you’re the one who’s staring at the chopping block ahead of you.
Rather ironic that this is going on just after Stephen Hawking got yet another award and more kudos for Accomplishing So Much In Spite Of His Handicap. Everybody likes to make a fuss about that. Unfortunately it seems for a lot of people, it’s easy to ignore that disabled people who aren’t super-geniuses can also give as well as take.
I think that the real issue is that a competent, intelligent person (like Christian) should be able to weigh all of his own options and make an informed decision. That is what Christian has done. Have you spoken to Christian? Is there some interview where he is quoted as saying the health care system failed him? Someone in his condition needs round-the-clock care. Even if he had that in his own home environment it wouldn’t matter. He is still trapped inside his own body and that will never change. That is why he *chooses* to die. Not because of failed health care.
@maud
Bolded for emphasis by me. That, right there, is the core of the attitude that is the problem. The idea that Christian is necessarily trapped by his paralysis, and has nothing worthwhile left in life to pursue, and nothing that he can contribute to anyone outside of his “trap”.
I can’t say that in a similar situation a few years ago I wouldn’t have felt exactly like Christian. I’ve absorbed all our culture’s narratives about disability, and how terrible it is to be a burden, and how horrible it is to be useless. When that’s all you know about severe disability, and then it suddenly happens to you, and then if nobody shows you that there is a community of disabled people who have so much more to enjoy and celebrate than a life of being burdensome, then why wouldn’t you want to give in to the implications of all those words about the tragedy of disability and end it all?
All this even though I’ve worked with profoundly disabled people in the health system, people needing a very high level of personal care and assistance and therapy to keep their bodies from deteriorating . I look back and see that I treated them conscientiously, even with some degree of empathy, but that I failed to work at creating a true human rapport with most of those people. Because my job as a physio was just about their musculoskeletal system, and so emotionally I had the luxury of not having to really consider what they needed cognitively and emotionally. (Isn’t that what nurses are for? and OTs? ho-ho, look at the hierarchical privilege of the medical system in terms of who gets to do all the emotional work.)
But now? I now many disabled voices through the internet. I have read what they write about their lives, and about the people they love and who love them, and I know that these people are not trapped within their bodies, their minds can roam wherever they want to go as long as the people around them are willing to enable this. I also know that many of the people I interact with online could be disabled but have not disclosed that to me for fear of a negative reaction to their ability status, because of exactly this view that severe disability is a tragic trap into a life not really worth living.
Christian appears to have not had any advocates willing to demand such a life of interaction for him, or perhaps none who even knew that it was possible. The real tragedy is that after his injury he was herded into a life so devoid of any of the richness potentially available that he sees it only as a desert with not a single oasis.
None of this negates his right to a personal choice to die. I still fully support that. But I cannot celebrate this court decision when it means that a man who was abandoned instead of properly assisted is going to die without ever getting the proper assistance that he should have had in the first place.
This decision makes me incredibly sad. This is not a precedent that ought to be set. This ought not to have been thought of as the best way to deal with the unhappiness of someone with a disability who has been given no support to access the environment. It’s awful and it’s tragic. And it says something truly awful about our world that euthanasia suddenly becomes a possibility only because disability is supposedly so tragic; and a complete incomprehension of all of our implication in this man’s suffering. I hate this: we’ll make you suffer, profoundly, and then we’ll let you die. This really makes me hate the world rather a lot.
Oh, and Radio National, weirdly enough, is covering this story as I’m typng this.
Good post Lauredhel.
This is an issue that’s been quietly bubbling away for a while now. Some two years, I think, I first did a transcript about the topic of young people in nursing homes because of a permanent disability or illness, and their lack of options, and it pops up in the media still every now and then. It deserve to be looked at much more than that.
I believe Bill Shorten is the Federal Minister for Disability. Perhaps an email to his office could help to draw the matter to his attention and get something done.
Edit: ‘Some two years’ should have been ‘Some two years ago’.
@maud
That is why he *chooses* to die.
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.
However, the point Lauredhel is making is that it isn’t an informed choice, because he hasn’t been given access to the best possible life, and that this should have been shouted loudly by everyone involved in the case, but instead has been completely ignored.
And now, since he hasn’t made the decision, it is important that people do shout about it, so that hopefully Mr Rossiter is provided with more options before he does make his decision. I’m glad he has the right to make it (although I agree that the only option he has is not a good one), but he hasn’t won much if he isn’t also granted the right to live as well as he can.
Thank you, tigtog, for the comment at 20.
Ariane said
Amen, sister.
.-= Ricky Buchanan´s last blog ..April, 2004 – A Typical Day =-.
What a shame. Care should be holistic and complete. He has been seriously failed.
I’d like to ask everyone to please find a minute to look at this organization/charity set up by a friend of mine. It’s UK based, but I would love to see his work given the opportunity to expand to the rest of the world. They’re really walking the walk, in regard to Lauredhel’s point:
http://www.specialeffect.org.uk/pages/about.htm
Mick’s doctorate is in education, but he became frustrated with the way all the technology attention and funding seemed to be directed towards developing educational material for disabled young people, when he feels their right to active leisure is just as important. He’s also developed some amazing programmes that help quadriplegics write music and choreograph dance.
I hadn’t heard about this case until now.
It’s not a “win” if dying is viewed and (tacitly or not) encouraged as the *only* option other than grossly inadequate treatment. In my view, a REAL win would be better treatment for all people with disabilities. As Lauredhel said, the right to live is just as important; it disheartens me to see folks applaud this case as a “win” when the right to being able to live with a disability and be entitled to proper treatment is routinely dismissed, or not even considered by the majority of people.
I can see how a judicial decision that health practitioners are not obliged to officiously force feed someone against that person’s will can be viewed as some sort of win, I really do. People should not be assaulted by medical treatments without their consent.
It’s just that there’s this huge iceberg of assumptions about disability under that gleaming tip. And most of the discussion about Christian’s right to die is averting its gaze from the rest of that iceberg.
Betowess, in moderation? You seriously think this is a super terrific thread to start extolling the virtues of ZPG, and about how the human race is due for a correction? Fuck off.
Helen Morton has spoken about this:
Liberal MP Helen Morton, who has spent time with Mr Rossiter, said she was concerned that he was thinking of death only because society could not offer him a life with any quality.
“Does this man really want to die or does he want a more stimulating life?” she said. “If he is suicidal in the absence of a terminal illness, should we not be focusing on what can be done to treat his suicidal ideation? He doesn’t have too much to look forward to day in, day out. But if that were to improve would he still want to die?” (West Australian, 11 August 2009)
I still thnk that he should have all the choices available to him – the choice to have an engaged and fulfilling life and the choice to leave that life how he wishes. The right to die by starvation is not a win for anyone.
This morning’s paper is reporting that he may well choose not to starve to death.
Trackback.
You know what I don’t want to do today?
Watch Whose Life Is It, Anyway?. Or Million Dollar Baby.
Movies or television shows come out with alarming regularly that are, essentially, “Suddenly join the ranks of the physically disabled? Your life SUCKS.” For extra bonus points, one can watch “light-hearted comedies” where the take-away message is that if you really love someone with a disability, you will help them to die. That’s what “real” love is.
I haven’t seen a movie where someone, in the case of a sudden accident that leaves them with a disability, is given the opportunities to learn about their new life, to interact with society, and to form new relationships. Maybe they’re out there – I don’t watch a lot of movies. But I think they are rare, and I think that this has helped shaped the nature of the discussion.
Because of course Mr Rossiter should end his life. Everyone knows that there’s nothing else to be done after such a tragedy. We learned it at the box office.
orlando: thanks for that link. ADAPT in the USA works hard on the issue of community care for people with more severe disabilities who are currently being warehoused in nursing homes. I haven’t seen any similar groups in Australia – has anyone? It’s bloody difficult to organise from a nursing home, even if you have the communication capability in the first place.
Anna:
Can I recommend Friday Night Lights? (TV, not movie.) It’s a marvellous examination of masculinity, which includes examinations of sexism, violence, racism, disability, class, adolescence, and a whole lot of other interweaving issues. Without being too spoilery, it fits your brief.
cricketk: thanks very much for that excerpt. It’s so sad that non-Liberal politicians haven’t bothered to speak out. The “left” is supposed to be better than this.
We’re literally fighting for our lives here. And so few people seem to see that. This is not a distanced, intellectual, political argument, and I really thought my post made that clear. I’m not moving pawns around a chessboard. I’m desperately trying not to be that discarded pawn, and am painfully aware of how few allies I have in that fight.
I have been seriously considering going a step further and making these threads PWD-only, because non-PWD-centric comments on posts like this trigger the fuck out of me every single time; except there are one or two of you who I think aren’t PWD whose contributions I value.
@lauredhel http://ypinh.org.au/ would be the closest Australia has to ADAPT. It’s a very young and small organisation and I doubt they have much political clout yet, but they’re the first I’m aware of that’s starting to work in this area.
Having almost ended up in a nursing home on multiple occasions, it’s something I try to keep abreast of when things happen.
r
Thank you Lauredhel. A great post that has made me aware of the greater issues in this case.
After reading the post, I was reminded of Tero Sand. This goes back to when I read Talk.origins in the mid-90s but he was regular contributor and had a great mind. It was not until he died that I (and probably others) found out that he was a quadriplegic and needed a respirator.
i felt really sad watching this story on the news. seeing him, and thinking ‘that man wants to die, he isn’t sick or dying! he isn’t old! he is unhappy’
thanks for this post, i wish i could get Christian Rossiter to read it! or someone to read it to him.
when i got too sick to leave the house, i got really depressed and starved myself and tried to kill myself. it was the confinement and the lifestyle, the potential for the fabulous life i am living now was always there. thank god i had people to help me, who stopped me from my attempts and showed me what i can have. thank god i realised! not saying that i am extra special or better or smarter than other people, who didn’t/haven’t managed to figure out their differently abled new lives. just lucky. plus my disability is invisible and i am young, so i *look* useful… 😛
anyway, thankyou. and i wish i could talk to him, and i really really hope things change. arguing on the internet is a great reason to live, if nothing else 😛
But shouldn’t the issue also be about the poverty of options afforded to him, and whether they could be better?
All of us are, mitigated only by our imaginations, and ability to stimulate them by interaction with things, people, and places outside ourselves. Christian Rossiter’s disability limits the ways he can have that interaction, but doesn’t remove them – only abandonment can do that.
Ah, I see; also, sorry for continuing in a derail.
Thankyou for saying that; I’d got the wrong end of that stick as well.
[I’ve been asked to post this for a reader who wishes to remain anonymous. ~L]
Brightwater Care Group nursing homes are fucking SHIT places to be stuck in, and it is a perfectly logical response for someone to rather be dead than live there for the rest of their lives, but the response to that is to GET THEM THE FUCK OUT OF THERE. I have several friends and acquaintances stuck in one or another of those places in Perth, all PWD in their thirties and forties, and they are stuck there because the state government does not see it as a priority to get them out into the community. One of my friends has been in there for nearly a decade, and has been working to get out into DoH housing, but the fucking DoH have been fucking her about for years – just another 12 months, then oh, just another two years and then… god knows when. DSC have been fucking her about as well, and she is in their “profound and severely disabled” category that they supposedly provide more assistance to than the shit Local Area Coordinator system that the rest of us are stuck with (who, despite the very best efforts of the lovely chap who is my LAC, cannot help me with MY housing difficulties because there is nothing out there in the fucking community that is accessible and affordable).
And, I note that THIS isn’t mentioned in the news reports: Nursing homes are funded by the federal government. If you are in a nursing home you are not eligible to access local government HACC services that provide support to PWD in getting out into the community, such as social support and transport and physio etc. And they don’t always provide those in nursing homes. Another friend was moved from her previous care home into a Brightwater facility a couple of years ago, and she now suffers from regular and prolonged bedsores due to lack of proper skin care – something that wasn’t a problem before she ended up in fucking Brightwater.
And where are this man’s family and friends – did they stick around after the accident, or did they do the AB bolt?
So sick of this shit.
You would be appalled at the number of complete strangers who have come up to me in the street over the years, when I was a teenager and young adult and told me “Oh, you’re so brave, if I was like you, I’d kill myself”. I was actually severely suicidal at the time, not because of my disability, but because of a lifetime of abuse, isolation, abandonment and neglect – thanks to my oh so “loving family” and their rejection of me because I was born with a disability.
The comments on Anna’s new post… ugh. Anna, I don’t know you, and I’m not really talking about your participation in that post/thread. But the other commenters? Do they not realize that this deliberate narrowing of focus IS A FUNCTION OF ABLEIST PRIVILEGE? That they refuse to see the whole of our lives SO THAT they can ignore our needs? And this is where we end up?
I think Rossiter should have the right to die. Even given all the options available to him, he may still wish to die. That’s fine with me. What’s not fine with me is presumably abled people actively shutting down disabled people’s attempts to say “YOUR IGNORANCE IS KILLING US.”
That’s the purest form of bigoted bullshit, and IT RESULTS IN UNNECESSARY DEATHS, and it results in LIVES BEING RUINED.
YOU are participating in it. YOU!
WP, thank you for your participation in that thread. You put a reasonable point on the subject that is much needed.
The other commenters, including any site mods who condone it (actively OR passively) — these people are complicit in a system which shuffles people off to live in misery or die. Whether you mean to do it or not. THAT IS WHAT YOU ARE DOING. IF YOU DON’T LIKE THAT IMPLICATION, MAYBE CONSIDER CHANGING THAT.
People are asserting their right not to have to think about this.
And that is *exactly* what has put Mr. Rossiter in this situation. Because everybody sits smug and secure in their right not to have to think about HIS LIFE.
Thanks Amandaw.
And thanks to the hoydenizens who have stepped in over at LP. It’s nice to not be alone in that thread!
And Lauredhel, that discussion of Brightwater, whilst unsurprising, is heartbreaking. And reinforces all that is obscured if all you pay attention to is the courts’ permitting Rossiter to choose to die.
Goddamn it…
Musings on living with severe disability:
I’ve had people tell me – to my face – that they’d commit suicide if they were in my situation.
I think if you asked random (able-bodied) people in the street if they’d rather die than be a high level quadriplegic most would say they would choose death. But if you visit the spinal unit wards where newly injured quadriplegics are in rehab these people are, overwhelmingly, not suicidal.
I don’t think that any of us know HOW we would react if major and extreme changes suddenly dropped in our laps – whether it’s discovering an unplanned pregnancy, having a partner die, becoming disabled, or whatever. We just don’t KNOW how we would feel and react in these circumstances.
Remember the guy who sawed off his own hand with a pocket knife so he could escape from a canyon after he got trapped under a rock? He never thought he was that strong either. People have a built in will to survive that’s a LOT stronger than we give it credit for. Most people never discover how strong theirs is because they never have a huge catastrophe or challenge in their life – but most people who do have a huge catastrophe/challenge find themselves stepping up and dealing with more than they ever thought possible.
If you’d asked me 10 years ago whether anybody could have an enjoyable and fulfilling life while completely bedridden I would have thought you were mad – and I was already sick by then. And now … I’m living that enjoyable and fulfilling bedridden life. I’m not saying any of these things are easy or without despair and hard patches and needing support emotionally, but everybody’s else’s life has those things too.
You can’t assume that life in certain circumstances is not worth living, or would not be worth living. You just can’t ever ever know.
I’ve been over and over and over the thread I’ve referred to, and I still can’t see how it wasn’t primarily about euthanasia at the time of writing, though some people were using very indirect language (and some weren’t). I don’t tend to use euphemism much. Anna W: I’ve been trying to read between the lines, and trying to guess, and am now wondering whether you think that what I was saying is that you were speaking in favour of murdering PWD against their express wishes? I wasn’t. If I’m stupid and shallow for not getting that reading, I’m stupid and shallow. In my dialect/idiolect, “knock off” applies to all killing, not just murder. I also had no idea what “death panels” were; none of this had anything to do with USAn politics for me, which I haven’t been following of late, save reading that someone I don’t know said something ignorant about Stephen Hawking.
general remarks: Listing and rebutting the distortions, false speculations about my thoughts and actions, and unethical behaviour that’s been thrown at me by other folks since I spoke about this would take me much of the night. (a) I have a feverish kid to tend to, (b) I’m uninterested in being baited into fulfilling anyone’s desires for a recreational weekend stoush, and (c) it would yet another a distraction from my point, which is the lives of PWD and the deeply ingrained ableism of Australian society.
As soon as conversation turns to the rights of disabled people, about how we’re dying, about how we’re fighting for our lives and worlds and families and connections, it’s handwaved away with a “oh, well obviously yes we’re in favour of rights and care and stuff.” As soon as the conversation turns to stoushing, the energy level rises and people are shouting and fired up. I find this contrast inordinately dispiriting, and the exact opposite of what I experience.
Bottom line: If anyone wants a dispassionate, impersonal, detached, theoretical conversation about disability politics, I suggest having it with people who don’t have disabilities. That wouldn’t be exactly the most novel idea in the world.
me:
Lastly, something that’s been gnawing at me badly: I apologise publicly to the PWD who haven’t found this conversation a safer space to be. I’ll be going back and back over how to try to improve that, and backchannel comms/suggestions/comments from PWD are more than welcomed by me, if you’re up to it.
You’re right.
The rest of this comment is not “getting at” any one point; it’s just my experiences.
I have some weird chronic thing and they haven’t figured out what it is (yet? I still hope they will), but it’s progressively reducing my mobility.
I was very depressed when years ago I was first told I could no longer kayak, ride a horse, or even wade in the ocean, ever again in my life. (Or else it would make my condition worse. I waded in the ocean anyway. And got a flare up that kept me in bed for the next two weeks. Didn’t try that again.) But even though I hated this knowledge, and for a while had “nothing left I could do that I enjoyed”…I thought, this happens to other people. There are other things in life that a person can enjoy. I will find some of those. I did have to mourn the loss of my erstwhile favorite activities. And that’s what it was — it wasn’t “sitting around feeling sorry for myself,” it was grieving. But after I mourned them, then I could move on. I guess I was lucky that I always knew that’s how it would be — so I never wanted to die because of that.
OTOH there were times when the pain was so bad that I decided: IF there’s no way to treat this pain, and IF it never waned but was always at least this bad — IF I’d have to live with this level of pain for the rest of my life, I’d rather die. Because I couldn’t *think* straight. I can’t enjoy anything if I’m in so much pain I’m not even aware of anything else. But this was hypothetical because in reality the pain waxed *and waned* (and we hadn’t tried all possible treatments yet). I mentioned this *very hypothetical* decision to my physical therapist, and he literally *flinched* away from me as though I’d brandished a knife at him or something.
I found this thread because a commenter on Kate Harding’s article on “death panels” linked to it. That article had got me thinking about the fact that should I ever lose the ability to swallow as part of a terminal illness, I don’t want to die of dehydration. I’ve been mildly dehydrated. “Peaceful”? Well, if you insist. Your head spins. You lose any judgement. You make stupid decisions (that often lead to your death if you’re out in the wilderness, which is why we (former) wilderness enthusiasts work hard to learn the symptoms). You just can’t think straight. You may even hallucinate.
That’s **not** what I want to experience right before I die. *My* ideal death would be: We decide tonight’s the night. I go to sleep at my regular bedtime while completely undrugged. (I don’t want a drug putting me to sleep — I want to make my peace with death, taking as much time as I need, and only then go to sleep.) Once I’m asleep, somebody administers a lethal drug. That’s what I want.
Of course, that requires legal euthanasia.
But that’s if I’m actually dying, not “my life is no longer worth living” or whatever.
(So what if we had legal assisted suicide only for those with terminal illnesses? Bad Cripple points out that could be abused too, but if we were careful about the definition…?)
I apologise publicly to the PWD who haven’t found this conversation a safer space to be.
I think other people than you owe the apologies there; including me.
Nursing homes are funded by the federal government. If you are in a nursing home you are not eligible to access local government HACC services that provide support to PWD in getting out into the community, such as social support and transport and physio etc. And they don’t always provide those in nursing homes.
What the hell rationale do they give for that?
Thank you Lauredhel for taking this on. Once upon a time I would not have been able to see the issues with the LP post. But thanks to you, tigtog and this blog I now understand a little. There is plenty of room for improvement. I don’t think it is patronising to offer suggestions that could improve someone’s quality of life (as suggested @ 45 on LP), and for relatively little cost . Shouldn’t we at least offer it as an option to starving to death? I agree that if having exhausted all his options Christian still chose to die he should be able to, and it should be easier than the starvation route he was presented with. No argument. But you have to convince me that he has had access to all his options and I’m going to take a lot of convincing.
I apologise, but I’m just not feeling up to wading into it over there today. How many times can someone say “don’t automatically assume that people with disabilities don’t have any quality of life” before someone gets it?
Mindy, thanks for your comment. We’re into page two of comments now, so I’ll repeat something I wrote much earlier:
The Age’s letter page today has people talking about how “elated” they are at this outcome, several suggesting how his suicide could be speeded up, and another comparison to animal euthanasia.
No autotrackbacks here, so I just want to say that the post “Devaluing the Disabled Body” at meloukhia’s place is marvellous. And the rest of her blog is pretty great too. Especially stand-out is lots of meaty nuanced discussion on gender in pop culture (especially SF TV) that might suit some Hoydenizens.
Well. I read the blog posting via a link from Not Dead Yet http://www.notdeadyet.org
and am tickled, as a person with cognitive “glitches and “late arrival to the internet”,
to finally (with help from Viv) to make this comment!!!!
Every task accomplished feels HUGE. I have been thinking about my comment-to-be since reading it. I leave to others to comment on the similar stories
that have come up in the US in the last couple of decades (about the amount of time that I have been disabled by severe illness). Like many others, I didn’t follow very closely, stories about people with disabilities until I “joined”.
I have been thinking about my pal, “R”, another artist who was disabled, with whom I became very close. (Serious illness and disability make bridging friendship both easy and quicker than pre-illness for me and some other people I know and have known.). I knew my pal “R” for 20 years. We started and ended as pen-pals with a lot of US geography between us, as well as he being a male chauvinist and me being a feminist. We had some phone conversations – my limited phone use. We did share a wild sense of humor, as well as art. My pal R, had incomplete quadriplegia, for 27 years. He told me that after 7 years, he decided he wouldn’t kill himself, and found the art group that I started, the
Disabled Artists’ Network (a post group, not online), in April 1985.
R didn’t die from his disability of quadriplegia, but from an infection he got in a
hospital, the MRSR infection, where he’d gone for treatment of bedsores (gotten
from sitting many hours a day in his wheelchair in his greenhouse). He did beautiful pen and ink “pointilism” (dots) drawings, using a wrist splint, so he could hold the pen. I am in NYC, and he in Oklahoma, rural.
I got to know some of his family over the years and he got to know my spouse, who is my caregiver (“carer” in the UK). It seemed to me that persons of religion were most interested in us as people with disabilities.
Yesterday, I was able to get out on a (st)roll, spouse pushing my wheelchair over many streets of mid-Manhattan. I was telling a homeless pal I know for some years (including the recent two that I was totally homebound – ending in April),
about the man who ran over to me, sticking a pamphlet into my face (not good since I have allergic asthma also and print makes me wheeze). And yelling, “Jesus
died for your sins.” Being an atheist Jew, I was confused and thinking that was a good thing, said, “Good…” “Thanks” and the man got upset. My street-living pal, E, knew of my ignorance. He’s young and reads the Bible (New Testament) while
asking for money on the long street, Broadway.
Too many movies have mashed up what life is like for people with severe disabilities, as well as novels. When someone become a person with a (or many)
disabilities, ignorance of living well while disabled is unknown….until someone
explains it is possible to live independently (if you can find a wheelchair accessible place to live, attendant care at home….) and how.
So pleased to have finally posted this comment. I am happy to have found the blog! Thank you.
Welcome Sanda. Nice response to people who thrust pamphlets in your face. Gave him something to think about I suspect.
I like your point about movies, I’ve never really considered it before. There was some talk of doing a ‘Lincoln Rhyme’ movie. For those who aren’t Jeffrey Deaver fans Lincoln Rhyme was a detective injured in an accident and became a quadraplegic and now solves crime from his house with his trusty sidekick Amanda (?) who herself has crippling arthritis. There is some nice URST between them. Of course he has bleeding edge technology at his disposal which most people don’t have and which would be the envy of many a police district. But most importantly he has an astounding brain. I guess the point I (and Deaver) are trying to make is that although he can’t physically get out there, mentally he still can and still solve the nastiest crimes the police have to offer because he is still Lincoln Rhyme.
Apologies: The Bone Collector in 1999 was the first Lincoln Rhyme movie. I haven’t seen it, but apparently he was bedridden in the movie. I will have to check the book to see if he was bedridden in the book.
Welcome Sanda.
” Being an atheist Jew, I was confused and thinking that was a good thing, said, “Good…” “Thanks” and the man got upset.
Crackup!!
Christian Rossiter has just died.
R.I.P.
RIP indeed.