It’s ‘time for a conversation’ on assisted suicide dangers, says Liz Carr, ahead of BBC1 documentary

Disabled actor and activist Liz Carr has described her hopes that her BBC1 documentary about assisted suicide will finally explain the dangers of legislation to a mainstream audience.

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I dismissed concerns about assisted suicide from specifically Liz Carr when I first heard her air her concerns many years ago when I was more ignorant and ableist than I am today.


This was long before I’d observed the landscape of assisted dying in Europe and Canada. So I guess I’ll try and watch this. Although I don’t know how much more I can bear to know about the eugenicist horror show that is MAiD tbh.


I will say that a few years ago when disabled activists in Canada were campaigning in what they all felt was a futile but nonetheless essential battle to try to protect themselves and their disabled community from the effects of MAiD targeting the disabled population of Canada specifically and disproportionately, and I became aware of this particularly egregious example, I knew with absolute certainty that we’d be getting something like it over here in record time since at that point the pandemic was under way and healthcare was collapsing, if they’re not going to treat people they’ve got to do something else with us haven’t they?

 

Medical aid in dying should be easily accessible to anyone with a serious physical or mental health condition. My body, my choice. Just because social or economic factors are factors influencing some people's decision to get MAiD doesn't justify denying bodily autonomy to everyone.

 

My mother died far to late in the process of her motor neurone disease. After having watched her desperation to die at a time before voluntary assisted dying became legally available, I have no tolerance for opposition to it, however, only with strict limitations. It's up to each jurisdiction to decide for itself but I think Australia's restrictions and safeguards to detect family pressure and guard against the feeling of being a burden have been addressed as much as it is possible.

In the end, after a meeting with her, me, three nursing home staff and her doctor, maximum doses of a drug to treat a symptom of heart failure were given to her. A known side effect of this drug is stopping the heart and it worked in a matter of days as she was under 40kg by this time.

These kind of situations must happen a lot and it's essential that assisted dying is legally available to anyone who is terminally ill. I also happen to think that assisted death should be available for non-terminal illnesses where suffering can't be alleviated but misuse would be far harder to control I imagine.

 

If you had a society where human life, and the conditions for human flourishing and freedom were protected and cherished, no matter a person’s perceived economic utility to the government and state, and if people’s perceived worth across society in communities and neighbourhoods in places of study and work and in social groups and in families and in the home and with partners, wasn’t determined by the prevailing political ideology as well as historical hierarchies folded into this, if there were no material and social consequences to being born into or acquiring a diminished status in your society that leads to a substantial or near total loss of autonomy, or an experience of isolation and exclusion that for members of a social species as we is actually classified as a form of cruel and unusual punishment, amounting to psychological torture by a legal system not famous for being particularly compassionate, if we weren’t in ever growing numbers finding that the refusal of care and the extractive exploitative punishing regime of our political system has left us in a state of complete despair, undernourished or starving, in housing insecure or unfit for human habitation or unsheltered, in jobs where we are abused or in the endless humiliation of claiming social support under a punitive system, or losing our children because we cannot look after the after them after the pressure of these conditions have broken our minds and our bodies, left in mental health crisis with nothing or locked up, in terrible physical pain because they won’t fund healthcare or have excluded us from access to it for one reason or another, if they weren’t herding us into an early grave in unimaginably distressing circumstances leaving a trail of bereaved traumatised loved ones behind us who if we’re lucky enough have managed to stay close to us to the end, then we might be able to trust these people to legislate over our deaths. But as it is if we still value our own or each other's lives, then we probably best not.


I think people who acquire disability status in adulthood or who are isolated from the disabled community even if born with impairments, tend to taken on and internalise the non-disabled outlook and ideology. Disabled people busy dealing with physical and mental impairments, as well as daily discrimination and exclusion, usually don’t have any spare capacity to learn the disability history which would provide a different ideological framework to the dominant non disabled one. So despite the stakes being different for us and our interests not served by dominant ideologies which claim our lives and our bodily autonomy at disproportionately high rates, at a slow steady rate, interspersed by periodic spikes and escalations, followed by hard fought for declines in the losses of life to indifference abuse and exclusion from care that up part of the routine and constant threat hanging over disabled people, we are likely to view society in similar ways to our non disabled counterparts.

Now more and more non disabled people are being disabled the perils are going mainstream. If we don’t have the means for survival available to us then we can’t live, we will die, because we can’t live. But the scholarship and historical knowledge of disability history and theoretical frameworks that might help us to better defend ourselves and each other from such deprivations, hasn’t yet broken into public awareness.

We gave not our consent to be abused and punished until we can’t take any more and beg those who pillaged our village and took us hostage and forced us into servitude and hard labour and deprivation and physical and mental torture, to just kill us. That just do what we’re forced to do.

So we have most disabled people denied the opportunity to learn about the implications of endorsing and endowing the state and their agents in the medical system with the official power to directly kill, to match the powers that they previously persuaded our a section of our population to endorse them in policies that indirectly take our lives.

One would have to believe that the state that treats us to such miserable lives and such gruesome deaths as this one does, in the streets in freezing homes alone hungry and and in pain, are in offering to allow us to consent to our deaths in exchange for an expedited release from the unendurable suffering that they, specifically they, cause us, will have a better outcome for people on the ground than their current projects are having, to wanna take them up on such an offer.

Jesus, these people are the same people (both parties leaderships at the time before the second presumably because they afraid of tabloids calling them softhearted or something) that decided maybe they couldn’t afford to to make sure those very many school children whose parents that they’d impoverished so much through welfare reform and allowing employers to pay poverty wages didn’t go hungry.

If there’s one thing they are busily stripping away it’s the autonomy of the people. So no they aren’t granting the middle class media punditry and medical classes the autonomy to get out when their relatively comfortable most certainly privileged and atypically wildly autonomous lifestyles are eventually lost to the ravages of disease, it’s just that those people are so insulated from the usual and typical experiences of everyday people in terms of noticing the ways in which material constraints actually change your sense of self in a way that makes self care and maintenance of a sense of self worth or hope or trust, almost impossible to sustain.

So yes this new law will probably help then elevate their own advantages over the rest of us even further, and that will feel like an expansion of autonomy. But for the rest of us what it means is that we will lose more of friends family and community to the system earlier than we already are. If we look at how doctors wrote up a triage plan for disabled people who needed any weekly care, any at all, and clinically vulnerable people had to put themselves on a government list in order to be able to isolate as they either had no choice or were instructed to back when you couldn’t get home delivery’s of food or pharmacy supplies, and the plan said if you need any care like so many people with ME do then ether stay home or no hospital care or no respirator care for you, now bare in mind plenty of non disabled ‘healthy’ young adults died at home with no treatment because the system collapsed, but also bare in mind that while people with learning disabilities were denied care because of their disability older people were still having their lives saved, thank goodness, but what is this as a little treat for not being a younger disabled person? It certainly wasn’t ‘a rational’ choice. Doctors have always killed disabled babies infants and children and adults because that’s one of the tasks that society has out sourced to them and because in an a disablist society they’re not immune and the training in a famously eugenicist field doesn’t help.

However disabled people are largely excluded from politics on the left and ridiculed, from the liberal mainstream of political opinion our liberty isn’t a high priority to put it mildly in fact quite the opposite, and to the right of the spectrum where our politicians in most parties mostly now reside, the priority is to eradicate us from society as far as possible either in terms of voice in public life or physically by either shutting us away in institutions or you know….otherwise.

So we’re pretty much friendless in a sense of having any kind of collective movement willing or able to come together with us and make the arguments to defend our interests. This has tragic consequences for us. But I think it’s a strategic mistake for the more progressive tendencies in politics not to pay more attention to how the less progressive tendencies weaponise and exploit issues around disability.

For example no we should not trust the medical profession with our lives and those of our loved ones as in life so in death. Because they can’t even look after their own interests, they don’t have the power to defend their own working conditions or the buildings that they work in from falling down around them, they can’t protect their from ending up with long COVID after ‘heroic’ self sacrifice working to save lives during a pandemic that was killing millions including their colleagues, all without even the kind of PPE, PPE most of them were unable to notice the government quietly destroying their stocks of, and being mocked and dismissed from their jobs and their access to healthcare as a result of daring to get sick, they can’t even protect their own lives from a government trying to kill and maim them, how are we gonna trust them to safeguard ours? When they quite literally don’t have the capacity to do so should they even want to.

I get why people want this so much is lost to us, we need to know our suffering will end. We’re all afraid of suffering, it’s universal. But we’d have to forget how many mothers of African and Caribbean descent are dying childbirth in our hospitals compared to, their counterparts of European heritage,
and any number of other clues that medical professionals are not willing or able to safeguard lives equally. So most doctors will probably have in mind all the patients that they wanted to or unofficially helped to die, out of compassion. Not the patients that they gave upon as unsalable or untreatable that inquest after inquest has found ‘mistakes were made’ ‘ Opportunities missed’ or the patients that they’ve treated harshly or unkindly or spoken to or about in derogatory terms about.

Unfortunately we’re gonna have to spend our last moments with the very same people who told us we were imagining are symptoms and refused to investigate our cancers leaving us to suffer until it was too late, every week a previously non disabled lower income bracket working class young woman mother to young children reports this exact situation to one of the tabloids sometimes many in the same week, I can only imagine how often it’s actually happening, and I don’t think they’re gonna be apologising for their own complicity in bringing about an outcome for us and others like us, but even if they did I don’t think I’d wanna it hear it.

I desperately wish our state and our medical professionals would prioritise and do everything in their power to alleviate the suffering of the living and the dying, but they don’t and they won’t make this happen by changing the law, they will make it happen by actually changing their priorities. Until then, as it has been so shall it be.

Also WTF they’ve given up basic infection control in hospitals, as everywhere else, in a pandemic that’s speeding along the deaths of terminally ill cancer patients in a very fucking painful way by giving them COVID-19 deaths of suffocation and other nasty infections secondary leading to sepsis, famously lovely way to go that, having abdicated all professional responsibility for not inflicting that type of unnecessary suffering, which I might add a patient doesn’t have the personal autonomy to avoid in such circumstances, how the hell are we supposed to believe that these people are to be trusted with the grave responsibility of easing people’s suffering when they’ve demonstrated themselves to be-at absolute best- so woefully inadequate in this regard?

 

Especially when it now includes pwMental illnesses who are struggling to afford to eat and going homeless because governments ignore their needs and don't provide adequate financial support to live with dignity.

 

If I start to develop AD later in life, I want the choice to end my life on the day and time I choose.

 

I understand, I experienced the same issue you did. Very complex. My Mother was a practicing Catholic and assisted in dying would not have been her choice so we would have had to respected that. We suspected her dementia/AD started in her late 50's but we didn't know enough about dementia. It's very nuanced during the early stages.

I'm hoping by the time I reach a certain age that they will develop technology where we can detect this early and I can make that choice for myself. I don't want to live in a long term care home.

 

Yeah…
I guess this is one of those situations that all of our ruling classes, pretty much everywhere, like to manufacture where they make everyone suffer horribly and then they say okay, you can have this nice or necessary thing to one particular group, and the other group says no wait stop, if you do that for them, the consequences for us are even more severe than the gains that they over there will receive.

Then the ruling class, even the most repressive regime, will suddenly decide to go all permissive with their subjects. It’ll be; I am sorry, you fight it out between yourselves kids! Aka let the people decide.

Then they sit back and watch the parties fight it out, knowing full well who’s gonna come out on top, it’s gonna be the dominant group, usually in terms of resource access sometimes numbers also but not necessarily.

So, did we get public consultations around ditching PPE stocks and sending medical and support staff off to their dignified bin bag wearing deaths?

No, of course we didn’t, because the people were perfectly united, against the government, in the understanding that that wasn’t the way to go.

Another thing to bear in mind is that if the British government predicted the rollout of this law change to be without the potential to cause harms that may make them look very bad, then they certainly wouldn’t allow the people to take any credit for the choice, after all when was the last time that they did anything at all for us, and got to bask in our appreciation?

They’re not backing themselves with this one. If only because they know that they probably can’t even provide the medical manpower and hours to mercy kill us.

My thought is that if they, our government and our medical professionals wanted to help us alleviate or avoid suffering, there are many, many opportunities already fully legal that they could be exploiting, right now. That they aren’t taking advantage of these avenues is concerning.


I also wonder why the government and medical political establishment are less well disposed to unassisted suicides at least in rhetoric, they’re certainly all for the causes, going by the rising numbers under their policies of people seeking and taking this route out. What is wrong with a DIY death, if we have capacity and desire to choose then let us choose? That may soon be sanctioned too, but I am not so sure about that. I think because rising suicides in the population are perceived as a reproach against them and their policies. As they ought to be. Whereas assisted suicide is seen instead as example of an asset rather than a deficit, service delivery rather than failure of provision. The Government get to be seen as benevolent and permissive rather than cruel and oppressive such that people will do anything to escape, where even death is preferable to life under their rule.

Faced with what’s on the table for people here, I think the dilemma for us comes when we want ourselves to live as long as we possibly can, but not a minute longer than we can tolerate. The case of an accident or very sudden illness or very late diagnosis is going to shrink our own opportunity to decide where the line falls. But in the case of other diagnoses maybe it’s problematic to value getting a doctors assistance to die because you can’t quite bring yourself to kill yourself, yourself over the life choices of others who are less cherished and valued by society and who’ve been told all their lives that they should ‘just kill themselves’ by random strangers in the street on a weekly basis is they can even face going out that often that is, people have to be really careful because doctors nurses and the general public have always said freely to and about them that they’d be better off dead. The medical profession used to put people’s disabled children in institutions at birth and advised them to forget about them and move on with their lives. There were lots of killings of those children, how merciful they were well…
Of course there have been terrible abuses of Dementia patients and I think many of us would be at least as afraid of that aspect as the actual horrific disease.

Maybe this is a case where the personal fear of a drawn out painful death and the fear that your fear of death full stop keep you around without professional help or of having to kill your own self or being unable do it, is a strong enough reason go ahead despite the risk to the lives of others. But I don't think that that’s how this issue is playing out.

What is happening in this public discourse is that people are so far and I expect mostly will continue to perceive only certain people in certain circumstances as those whose suffering a consideration here and which should be alleviated and whose lives should prolonged for as long as possible meaning that they can live right up to but not beyond the threshold where it’s no longer something that they want or can endure.

Where as other people are nowhere, but that’s not surprising because these people are always excluded and dismissed which is the very reason they are at risk of being so gravely impacted in the first place.

When I first ever encountered this issue it was through my family who all spoke often about how ridiculous it was that doctors couldn’t help people in pain to die in the context of the them nearing the end of their lives. It seemed like the most obviously straightforward thing in the world to me, that of course they should be able to speed up the process.

With this background when I heard disabled people express concerns that this would endanger their lives I thought two things, one okay sorry but I don’t wanna die in pain or watch my loved ones go there the same, surely there is better way to protect your life than to leave others to die in pain?

To which the answer is of course there is. But that’s not actually on offer.

They are actually making us choose between expanding the powers of the a state and medical system that both have a history and have set up present day conditions that facilitate social murder of disabled persons and other marginalised groups at far higher rates than those of the non disabled and non marginalised portions of the population, and tbh they’re not safe either, and dying a slower death if and when we might find ourselves in the circumstances that would leave us close to death but not close enough for release.

 

‘I’m fighting for the right to live’: Liz Carr on acting, friendship and her campaign against assisted dying

"Surely, though, assisted dying is about personal choice? Even if legislation were brought in and included “unbearable suffering”, which might make someone with Carr’s condition eligible, no one would be forced to take that route. “This isn’t because we think we’re going to be grabbed and taken,” says Carr. “The biggest catastrophe is that we’d choose it ourselves because there was no more choice for us.

“If an individual chooses to end their life, I’m very sorry and sad, but it’s private and personal – it doesn’t impact me. Changing the law to legalise assisted dying does. I know so many people who are suffering, not because of their condition, but because life is so much more difficult than it needs to be, because they need more than a 15-minute visit from a care worker in which to go to the loo and have a sandwich, because they’ve grown up in a world where they’ve been devalued, maybe told they’re a burden, and expectations of their lives are so low.

“I don’t understand why people aren’t fighting that. We’re talking about suffering that, on the whole, we could sort out. Instead, we can make suicide someone’s choice and feel good that we’ve supported them. Meanwhile, guilt-free, we don’t have to do anything to really change things.”"

https://www.theguardian.com/society...ng-friendship-campaign-against-assisted-dying