Former People With Disability Australia president Craig Wallace
When explaining his position on the latest round of assisted dying proposals, Craig Wallace is quick to make something clear.
“We get some misdirection coming from the supporters of euthanasia who try to imply we’re part of a religious push and it’s actually really patronising and misleading,” says Wallace, a former president of People With Disability Australia.
With Victoria and NSW examining laws that would allow terminally ill patients to access life-ending drugs, euthanasia advocates are again doing battle with a largely faith-based opposition, fighting with renewed vigour after a narrow defeat in South Australia last year.
[Why I don’t support euthanasia (and you shouldn’t either)]
But as Wallace and a small clique of highly motivated campaigners are keen to point out, it’s not just those huddled on Sunday pews who are fighting back. Behind the headline secular-religious divide, some disability advocates have been working hard to stop what they see as a serious threat to the communities they work with.
Lives Worth Living, a coalition of seasoned disability rights campaigners united by opposition to euthanasia, has been busily writing to MPs in Victoria and pushing the case against new laws via social media. Many of these campaigners find themselves in a strange position as long-time advocates for LGBTI rights, marriage equality and a woman’s right to choose, now fighting alongside often highly conservative religious voices.
Their advocacy draws on an international movement, championed in Britain by actor Liz Carr, and advanced forcefully in Australia by Stella Young before her death in 2014.
Frustrated that their case is not given significant public airing, those now carrying the flame have nonetheless gained the ear of Victorian MPs, expected to vote on proposed laws later this year.
Victorian Labor members Lizzie Blandthorn and Marlene Kairouz — who have both previously worked for the socially conservative Shop Distributive and Allied Employees Association (SDA) — emailed fellow MPs earlier this month, inviting them to a talk by two “strong women and long-time advocates for Australians with disabilities”.
“It is important all voices are heard in this debate and too often the views of the most vulnerable in our community are drowned out,” the MPs wrote.
Other major opposition groups like HOPE are also pointing to the arguments made by disability advocates to bolster their own cases.
Wallace — an atheist — is also keen to emphasise that his group comes at the issue from a human rights perspective.
“We know that people with disabilities are more likely to be physically, sexually, emotionally, and otherwise abused and coerced on a range of issues – and that’s likely to be the case with euthanasia,” Wallace argues.
Those on Wallace’s side are not convinced that checks or safeguards will be effective. At the heart of their objection is a concern that people with disabilities will be subtly coerced, pressured by a society that often presents death as preferable to life with a disability. This is exacerbated by material and practical concerns, including barriers to healthcare.
“The mainline position in the disability political community is to be against these laws,” according to Bob Joondeph, executive director of Disability Rights Oregon.
In 1997, Oregon became the first US state to legislate an assisted dying framework, and Joondeph has followed the responses of disability groups to similar laws around the world.
“It comes out of a long history of disenfranchisement and people — particularly in the medical profession but also more generally — discounting the quality of an individual’s life if they have a disability.”
As with the broader community, however, this is far from a consensus view. In Australia the issue is inspiring heated debate, one that is further fired up by anxieties about either side positioning itself as the authentic voice of the community.
[Better off dead? What Peter Singer doesn’t get about disability and euthanasia]
Much of the fight now focuses on Victoria’s planned laws, which include ostensibly rigid safeguards and oversight mechanisms.
The plan outlined by Victoria’s Ministerial Advisory Panel says that disability is neither a reason to grant assisted dying to a patient nor a reason to deny it. If someone with a disability fits all the condition of access — including that they are expected to die within 12 months, that they maintain decision making capacity, and that the request comes directly from them — they will not be barred from access.
Tricia Malowney, an experienced disability rights advocate who sat on the Ministerial Advisory Panel, is confident Victoria has struck the right balance.
“Since the report has come out I’ve received phone calls from people with disabilities saying ‘thank you’, because they have been clear that the recommendations have said that it’s our choice,” Malowney says.
One such supporter is Justine Martin, a former Sex Party candidate who was diagnosed with multiple sclerosis some years ago, and more recently with small lymphocytic lymphoma and chronic lymphocytic leukaemia.
“All the law is doing is giving us a choice,” Martin says. “An individual choice. Not just for disabled people now but for anyone in the future who may need to use it.”
Oregon advocate Bob Joondeph says he has some concerns about his state’s laws but that his organisation has not received complaints about coercion since the Death with Dignity Act came into force.
None of this sways Craig Wallace, who has tangled with Malowney on social media. To Wallace and his allies, it’s hard to imagine someone freely choosing to die with dignity until their ability to live with it is guaranteed.
“If you see all of that in context I think you might see why some of us are concerned,” he says.
I am not disabled but my adult daughter has autism and severe intellectual disability. I was all for assisted dying until I read Liz Carr’s articulate argument against it in terms of people with a disability. The main part of her argument that swayed me was the low perception of the existing quality of life of people with a disability by the general public and the lack of a voice of people with a disability in any public discourse. The total botching of the NDIS rollout especially in NSW both in adhering to the principle of “choice and control” thus ensuring a “good life” in practice where the other catchphrase of “necessary and reasonable” which means choice and control lies in hands of under-trained over stressed “planners” forced to roll out plans as rapidly as possible not people with disabilities. As Carr stated when the NDIS is both properly and fully rolled out and people with disabilities can achieve a high quality of life THEN lets revisit assisted dying. The fact is no one that is adversely affected by the current botched roll out is heard which to me re-enforces the concerns raised by Carr and Wallace.
“To Wallace and his allies, it’s hard to imagine someone freely choosing to die with dignity until their ability to live with it is guaranteed.”
I don’t understand what that is trying to say…any hints?
John, I’m an aged and disability carer. What that sentence means is that a ‘free choice’ about one’s human dignity – between continuing to ‘carry on’ with a disability/terminal condition, or choosing voluntary euthanasia – is only authentic if there’s an equality of dignity available in either choice. This debate isn’t really about euthanasia (which defacto has been going on for yonks, mostly workably, without the State’s interference – deal with it, people. Not every knotty human issue can be untangled with a law). It’s about what we as a society are going to decide will be the benchmarks of ‘human dignity’ in the future. State-sanctioned suicide is basically a sophisticated (‘rational, progressive’) civic mechanism to help ‘most of us’ not have to pay too much for, think too much about, or especially get too personally involved in answering that question. ‘Most of us’ don’t have cerebral palsy, or a C2 spinal injury, or terminal stage MS, or an ABI, or a daughter like mpkh99’s above…so backing her ‘right’ to legally ‘let go’ (with The State’s patriarchal nod of approval and ‘world best practise’ assistance) when/if her life gets too ‘undignified’ is a jolly sight less troublesome for ‘most of us’ than actually getting off our narcissistic arses and pulling our weight to make sure it…never does. Actually – you know – changing one’s own life priorities to pitch in and help create the kind of fair, sharing society and deeper collective consensus on what dignity truly means, so that even those in the most desperate, painful, terminal stages of life are never allowed, by any of us, for a second, to doubt their full human dignity. Human dignity? Contrary to the squeamishness about bodies which that phrase is code for in this debate, it’s not (should not be) defined by trivialities like being able to wipe your own arse, or piss into a loo not a bag, or manage your own menstrual hygiene, or walk on two legs, or talk, or see, or live free of pain…human dignity is defined by one thing: full membership of the human race; the tribe. Tell someone ‘it’s OK, we understand if you’d want to top yourself’, and what you’re really saying is: ‘…because we don’t reckon yours is a dignified fully human life, either’. We are spending more and more every year telling people not to kill themselves, to seek help, to ring hotlines, get counselling, if they feel the urge.
Why the fuck is it suddenly OK to tell one especially vulnerable group that suicide is a legitimate option?
By all means support euthanasia on an individual basis. By all means help others die if they decide they want to. You’ll get no trouble, no judgement, nothing but understanding and kindness from me. But you won’t get my help, and please don’t – via my country’s laws – ask me to legitimise it. Please don’t ask me to sanction ‘The State’ (as opposed to individuals) helping you do it. The suggestion that this is a matter of ‘individual choice’ ceases to be true – as it currently is – the second it becomes approved in law.
I’m a carer. My primary job is to help care for those who want to go on living. Tell any of my clients that the State says it’s OK if they want to die, and – individual choice or not – you are telling them that the State sees their life as less than everyone else’s.
I want no part of that. Why do you – who do want to die – need me to be?
Jack there’s no doubt that the neglect of the disabled of every stripe is an indictment on our incredibly wealthy and liberal society. And that we all, thru our lack of agitation of local members, our lack of involvement in volunteer organisations and our general apathy on so many crucial issues are an indictment. But the status quo is that if I take my own life, or assist someone else who wants to die to limit the pain and hurt to those they leave behind, the State will sanction me. I have no issue with groups, whether from religious or other convictions, restricting the circumstances or processes around someone seeking to end their life. Because my main contention is that the State needs to be limited in the manner in which it interferes with people lives, even while it should not be relieved of the responsibility to care for and support all those vulnerable enough to need it. It’s not a matter of the State telling people its ok that they take their own life or ok to ask someone to help them do so: it’s a matter of telling the State to butt our of something in which they should have no say, unless there is a person who needs protecting. The current law, like the abortion law and homosexual law, is about the State overreaching, even while it is failing in what it ought to be doing.
Hey Mike. I hear your argument. I have little doubt it will prevail and like most of us in the care industry – where there is huge diversity of stance on this – I’ll just shrug and keep doing the best I can to make sure everyone I work with lives with dignity.
But I think your argument is exactly the wrong way around. At the moment the State does ‘butt out’ of this issue. Functional euthenasia is a daily part of palliative care. I helped my own father die (advanced Parko’s +) four months ago, in a hospital. Could we have prolonged his life? Sure. Did he go gently, with dignity, relatively pain free? Yes. (Like he lived, thanks to his wife, his care plan and his own disposition.) Was it a special test case, via a legal loophole/State dispensation, for an Andrew Denton cause célèbre/TV doco? Nope, it was a regional hospital matter-of-fact everyday death. Will anyone be ‘sanctioned’ by the State for it? No. It took Phil Nitschke thirty years of increasingly desperate attention-seeking provocation to taunt even ‘merely’ the AMA into (reluctant) action. Grown-ups understand that life can’t be jurisprudentially perfect. Laws, moralities…they exist to protect the vulnerable. In this issue, the vulnerable aren’t those living with impossibly difficult terminal pain and (what they regard as) indignity who’ve decided they want to die; it’s those living with impossibly difficult terminal pain and (what others may well regard as) ‘indignity’ who fucking well still want to live anyway.
Death, be fucked.
That’s really who the euthanasia debate is about, for all the Dentonesque cherry-picking of the relatively rare first case that goes on. Try as hard as it might the euthanasia lobby cannot get around this: the State busts a gut to fight suicide for everyone else…so…why sanction it for the ‘sick’? It – sorry, you can’t pretend otherwise – ascribes a lesser value to their lives. You cannot pretend it doesn’t, Mike. Stella Young made this point forcefully again and again. Wallace again here.
If you say it’s OK for ‘that person over there’ to kill themselves if they want to, because of what they live with, then the message to ‘me, this person here’, who lives with the same things, is obvious. Whether or not you intend such a message.
This is not like abortion law or homosexual law. Incidentally if you’re curious, like Wallace, I’m not religious – and I am a libertarian. And as a libertarian, as I said I think your point about the State/butting out is actually 180 degrees arse about. The current status of the law – strictly, an absence of a law – protects vulnerable person A by forbidding (again, strictly, not sanctioning a legal framework) person B and C to do something to them (or anyone else). It may well mean that person D, who wants Person B and C to do that thing, doesn’t get his way. Well – as happens daily now – go ahead and do it, anyway See what ‘sanction’ the State imposes. It likely won’t even call it illegal. Unless, of course, Nitschke and Denton et al decide they need some more attention.
Sometimes things ain’t broke just because they don’t have a law fixing them, Mike. Sometimes we’ve evolved to the ‘least-worst’ functional-practical workaday solution, even if it’s not perfect. for everyone. For me, I’m very happy to accept the pro lobby’s compassion and good faith, their genuine belief that this change is needed, their assurances about checks/balances/etc even…no-one has a monopoly on morality or caring. And I’m not interested about ‘sanctity of life’ arguments, faith-based or otherwise.?this is an issue primarily about the living, who want to KEEP living, pain and ‘indignity’ be fucked. I work with them every day. It is beyond awe inspiring, no matter how much shit, piss, dribble, mucus, physical outrage and injustice, despair, agony and frightened bewilderment is involved. It’s the essence of dignified humanity. Fuck legalising euthanasia. How about society pass a law instead that mandates every citizen giving two years of their working lives to disability care? It would change this country, believe me.
Mike, I’m a passionate and often hyperbolic person and this is an issue deeply enmeshed in my daily life. Forgive the length and my apparent rigidity. In fact I have no doubt this change will roll on over those of us who think it’s a terrible mistake, on a matter of species-defining magnitude (we humans do life, not death!). And I’ll be cool with it. But I can’t see as anything but sad, the signal we as a society will send to less-than-perfect humanity (most of us!), and anything but unsettling the (yet more!) autonomy we will surrender to The State, if/when as a tribe we start to define ourselves according to some sliding scale of keep/discard ‘dignity QC’.
Warmest regards, Mike. I won’t go to the barricades on it, but my soul will choke back a little dismayed rising sob…:-)
Mike: as I said
I have every sympathy for those who want to die. I may well make that decision
Gah. Throwaway last scraps. Was just going to add that I understand the individual desire to die – bell yeah – and who knows, may end up in that place myself. None of us can know until we walk in those shoes… if I do get there, the last thing I will demand is that everyone else help me shoulder/share/justify the existential implications of it, except those loved ones/friends who choose to do so. And least of all…The State.
Edit button, Crikes! Cheers & kind regards Mike.
@ Jack Robertson – re: your comment, “By all means support euthanasia on an individual basis”, the problem with that is if it is not regulated, then there is real potential for murder to be committed by those closest to the dying who defend their actions by saying they were merely involved in an assisted suicide.
Yes, agreed Karen, there is always that risk – yes, there is now, certainly. But again I think like Mike you have got your own argument totally bum-about, with your implication that State ‘regulation’ will ameliorate that risk. You’ve got to extend good faith to the medical/care sector and the immediate loved ones/friends on this – comparatively, I mean ie as the ‘better’ risk-outcome option. Not because said individuals are ‘perfect’ – shit, no. But because – counter-intuitively – as soon as we as a society ‘regulate’ in State function/law a long-standing pragmatic case-by-case human practice which to now has been the province of individual (least-worst) choice-making, I think we are actually worsening the risk-environment. I think you get more legal ‘murder’ (don’t like the term but just matching yours) occurrences, not fewer.
That’s not to reject the pro lobby’s point on checks/balances; they rightly point out that other country’s haven’t experienced a rush to sinister eugenic excess. although the point is, it’s kind of hard to tell once the ‘legal’ goalposts have shifted. We. Weeds/doctors are nothing if not human/pragmatic. You let us legally start to improve the overloaded space/cost/time metrics of most care facilities…I can assure you we will overall, with the very best of ‘rational, compassionate’ logic. And I worry about the impact overall on our collective societal view of ‘human dignity’.
Our advanced dementia-care nursing homes are for example chockers with human beings curled up oblivious in their beds with no relatives, only kept alive (at great cost) because for now we as a society resist explicitly labelling their lives as no such thing anymore, and the medical/care sector continues to hold hard to the ‘do no harm’ base position as a stated creed – however selectively, imperfectly, and yes, occasionally with the wrong outcomes. Dignity? Well it is again a matter of how much energy the rest of us want to put into giving Mrs Smith, the ninety year old late-stage physical husk of a human being, her entitled share of it, isnt it? We can choose to make sure she has someone to read to her, stroke her hair, listen to her briefly muddled two am memories of childhood in a moment of vague lucidity, be there to hand her a dolly to cuddle when she’s dreaming of her baby, who hasn’t visited for ten years because it’s just too confronting now, mum isn’t really there anymore anyway…it’s all too ‘undignified’. Or we can enable the mechanism to make it ‘legal’ to overtly let her – actively help her – go. Which the better ‘dignity’ choice as a tribe? The debate about ‘dignity’ isn’t just about those suffering…it’s about us all. The times I feel most fiercely, profoundly proud and exhilarated to be human are those times when human flesh and blood is anything but ‘dignified’ – until you as a carer help fucking well make it so. You – we, as humans – make it dignified. A matter of sheer human will. I think we forget that all of us are living with a terminal condition. I think that regarding euthanasia as a ‘dignity’ option – on a State-regulated level I mean – is to forget how important to our own species-dignity is the determination to never allow anything human to become seen as inherently undignified, no matter how much the rest of us might try…as a lost-to-dignity cause, beyond human redemption.
Perhaps a good position might be to accept the pro lobby’s law proposed change BUT only on condition that my proposed law change – two years mandatory care sector ‘national service’ for all – is an enshrined requisite part of the legislation. He said. He said cheekily. But with deadly seriousness, too.
You have no idea, Karen – or maybe you do, please forgive if so – how much ‘dignity’ one human being can supercharge another with, simply with their attendant, loving presence…
Warmest regards.
I guess Jack, and you thru your circumstances, are coming from a different direction on this. Mine is that the State should cringe from imposing any restrictions other than those necessary for protection of the vulnerable, that is, a minimalist position on the powers of the state. This is not because of some libertarian position of “small government” – I like you believe in the State being very active in providing for all its citizens, so I like your idea of compulsory provisions for the elderly or infirm, and wholeheartedly support the NDIS as a priority.
But, without trivialising either subject, as we see in the current marriage debate, the State has well and truly overstepped in restricting marriage to heterosexual couples only. There is no evidence this restriction was necessary for the protection of anyone, let alone the vulnerable. I see the current laws that prevent me, as a mentally competent adult, from seeking assistance in taking my life, as a similar intrusion. And I see them also only doing a token effort at regulating or providing protection for the vulnerable. Leaving it to professionals, regardless of how ethical, to decide how to stretch and massage the law is a dangerous means of procuring either dignified dying or the protection of the living.
Surely both the right to live with dignity and the right to die with dignity are equally important and not mutually exclusive. And surely both rely on the same arguments about human rights. Thankfully I’m not a member of any group that is systematically and perpetually discriminated against, so don’t claim to understand how humiliating it must be but it seems to be giving the discriminators a free kick to provide them with an argument against what I see as an absolute right: that of ending my life when I chose and in a dignified manner.
The core question here is how does the Law distinguish between allowing the individual’s choice and coercion, not by greedy, grasping, selfish relatives but the State by neglect so culpable that death seems preferable.
I demand my right to choose but cannot imagine how to protect the vulnerable from external pressure.
As JR noted (and even mooted in the 50s “Doctor in…” novels of the recently deceased Richard Gordon) this has been going on for a while, wink & a nod, even to the extent of wheeling oldies outdoors in british winters to meet the old person’s friend, pneumonia.
For all that I can obtain smack or nembies and a litre of vodka, what if I lacked the mobility to ingest?
Anyone acceding to my request for assistance would face criminal charges.
JackR’s suggestion “How about society pass a law instead that mandates every citizen giving two years of their working lives to disability care? It would change this country,” would get my vote.
I would hate to do that and would bribe anyone, bigly, to avoid doing so but, like the Athenian idea of everyone (ie free born males aka real people) being required to serve the state in the agora of ideas, it would certainly have a salutatory effect on a society (ours used to be a civilisation but that was quite some time ago) that has long ceased to take itself seriously.
You might be surprised AR! Give your local dementia care a ring and get down there once a week to read aloud to a late stager with no visiting relatives. The simple act of according them the human dignity of your attendant presence may not mean a thing to theirs, but for that hour you’ll be reminding yourself of your own. (You’ll also be giving a meaningful and practical boost to the staff, who’ll be overworked and underpaid and, increasingly, wondering why they bother, beyond paying their rent…exactly the conditions that foster the ‘neglect in care homes GOTCHA!’ outrage-scandals that – periodically but briefly – surface in the Meeja…)
It’s easy for my point about wider societal ‘species-dignity’ to stray into condescending, behold-my-conspicuous-compassion’ cliche territory, so cut me some slack if my idea about care sector ‘national service’ sounds like a wank. But I’m absolutely serious about it as a really valuable and eminently achievable ‘trade-off’ societal ambition, as part of the euthenasia reforms. And it really would, I think, send a profound ‘tribal signal’ to ourselves, about who we humans want to be, what we want our world to look like, as we navigate our way through some pretty tricky medical-philosophical-ethical waters ahead…
Imagine if one of the main parties proposed it! What a brilliant public debate it would force us all to have…flowing into so many other areas of civic organisation, shape, policy priority…a bloke can fantasise, I guess…:-)
Yes – imagine it! I am writing to my pollie now – let’s see if they can imagine it too!
Brilliant….I will too.
Chrs mike, good to chat
Far from it – “my idea about care sector ‘national service’ sounds like a wank.” – it is the single most constructive suggestion I’ve heard to deal with the onrushing, about o engulf us all, tsunami of senior/palliative care.
I’ve suggested in the past that the only real employment growth in the foreseeable future will be in that field – mainly because of the number of boomers reaching their ‘best-before’ date without having bred or reared (far from the same thing) sufficient replacements who might give a flying.
Also not forgetting that they will also control the largest amount of assets which may, or need, not even be liquid or negotiable.
Rather than another job creation scheme for the vultures of the finance sector, who are really pushing reverse mortgages now onto AJ’s audience in god’s waiting, I’m think that there is an opening for the Greens to advocate an entirely new policy.
Live-in home care who inherit the property – as was pretty normal throughout much of the Olde Worlde until recently, still common in Ireland and Scandiwegia where home ownership is almost genetic.
Legislation NOW!
Neat idea AR. And ibgjink you’re right – the famed lifelong-habitual Boomer self-interest might just give our cunning civic revolution-by-legislation a shot…:-)