We need to live before we’re helped to die

D H Kelly argues that disabled people’s anti-euthanasia argument is a fundamentally anti-capitalist one

, 20 December 2017

Content note: discussion of suicidal ideation, mentions of death, discussion of disablism, domestic abuse, references to medical abuse

It’s not uncommon for a person faced with the bombshell of a romantic breakup to wonder whether there’s any point going on. Such an event can turn a life upside down and the heartache when love slips away (or reveals itself as an imposter) can be physically painful.

Yet, the rest of the world tells us that we’re going to be okay. There will be tactless comments about the fish population and the joys of the single life, but usually friends and family commiserate with the pain and encourage us to talk it through. They’ve been there too – they know how it hurts – but they can also tell us that we’re going to feel much better and that it’s all for the best.

There are cultures where break-up is a much bigger deal because relationships mean marriage and marriage is more concretely a life-long deal, with divorce viewed as a ‘scandal’ or as failure. How we handle life’s disasters isn’t just about the scale of the change or how much it hurts, but how our culture frames the event. The same applies to job losses or exam failures; despite the considerable pressures of capitalism, we try to encourage people who hit such a wall that they will find a way either over or around it.

Unhappily, little of this support exists for people who become disabled – or for disabled people whose impairments increase. Folk will encourage hope for a cure, regardless of prognosis, often producing half-read articles or giving half-remembered advice. People will express alarm at objects that signify the change, such as walking frames, wheelchairs or even medication. “Do you really need this?” friends may ask. “Does it not make you feel more disabled?”

Sooner or later, someone – a friend, a family member or perhaps a stranger on the street – is going to say, “If I was in your position, I would kill myself.”

Greater control for people facing death would be good if we knew we could put the right safeguards in place

If we treated romantic break-ups the way we treat permanent injury or chronic illness, we’d be telling the broken-hearted that they need to do everything they can to win their ex-partner back, keep all the photos on display and the ring on their finger. We’d encourage them to try not to ‘look’ or ‘behave’ like a single person and remember that their lost relationship was their only hope for happiness.

But the worse thing would be that when a tiny minority of very unhappily single people petitioned for the law to be changed so that they might be euthanised, happily partnered people would chorus, “Oh yes, of course! If my partner ever left me, I wouldn’t want to live any more! We do it for sick cats and dogs – why not the broken-hearted?”

Apologies to any newly single person reading this and feeling rotten – I use the example because almost all of us have been through it and most have wondered how on Earth life will go on. You are a wonderful, valuable person with the rest of your life, and all manner of love, delight and adventures, ahead of you. But so am I.

When death fast approaches, a person’s immediate comfort should trump the medical imperative to preserve life. This already happens to some extent; in late stage terminally ill patients, pain medication is often prescribed at deadly doses and we don’t think anything of it. Greater control for people facing death would be good if we knew we could put the right safeguards in place.

However, it’s a long time since the assisted dying debate in the UK was confined to the final months of life. Jurisdictions which legalise these killings have frequently expanded and extended quickly. The Netherlands decriminalised euthanasia just 15 years ago and already they are helping young people with mental illnesses to their deaths. There have been attempts to extend the criteria to include all older people who are fed up with poverty and isolation in old age, regardless of their physical or mental health. The excellent Flavia Dzodan has written about how this has coincided with massive cuts to state support and yet still these deaths are celebrated as a brave exercise of individual liberty.

Disabled people’s anti-euthanasia argument is a fundamentally anti-capitalist one

Arguments against assisted dying are often framed as illiberal, right wing and another way in which organised religion tries to maintain control over our bodies. The reason this caricature sustains is because “religious right vs. liberal left” is a provocative and profitable battle and because, quite frankly, disabled voices are ignored. Even those disabled people who vocally support assisted dying are often side-lined in favour of writers and commentators for whom significant impairment is a thought experiment.

Disabled people’s anti-euthanasia argument is a fundamentally anti-capitalist one. Capitalism encourages us to value ourselves according to our economic productivity and buying power; when we falter on this front, our deaths might be framed as a rational consumer choice. Disabled people can still be sterilised without consent, still find “Do Not Resuscitate” orders on our hospital paperwork and the threat of institutionalisation looms large. When parents kill their disabled children, commentators implore us not to judge. Employed by the government to assess people for benefits, Maximus routinely asks disabled people why they have not died by suicide and how they would do it if they did. There are entire movies about how the best thing disabled people have to offer is our deaths. These include romantic movies aimed at teenagers.

And so, in a country condemned by the UN for subjecting disabled people to “a human catastrophe”, in a culture which openly discusses how very costly we are to our loved ones and the state, we are looking at the prospect of being offered assisted suicide as the ultimate extension of personal freedom. Soylent Green is disabled people!

Almost the entire mainstream discourse about disability hinges on the idea that we are burdensome

The belief that a person is a burden to other people is one of the major risk factors for suicide. Many marginalised people get to hear that their existence is some kind of burden, expense or some other threat or problem to those around them. The most recent and famous example would be Donald Trump’s description of the “burden” of medical costs he pretends trans personnel cost the US military.

Almost the entire mainstream discourse about disability hinges on the idea that we are burdensome. We are a burden on our families; we are the children nobody planned to have, the children who would be better off not born. We are burdensome to our spouses and our friends and any children we have. We are burdensome to employers, schools, colleges and service-providers who are obliged to accommodate us. And then, of course, we are burdensome to “the taxpayer”; as NHS patients, social care users and benefit claimants.

Of course, the degree to which disabled people are a practical or financial burden to the people around them depends almost entirely on the politics of the day. Austerity measures in recent years have made many disabled people very much more expensive to their families and non-disabled partners; disabled people are less likely to be able to find accessible housing, are less likely to have their own income and are less likely to get the care they need provided by the state. Few of us cost the state more in our lifetimes than the amount of booze our leaders consume in a couple of years, let alone what the government spends in maintaining our ideological role as scapegoat. Yet, even though the idea of valuing individuals according to our economic productivity is anathema to feminism and other egalitarian movements (if we are what we earn, white men should be in charge), it is still commonplace to hear folk talk about disabled people in these terms.

This is especially the case when non-disabled people talk about how they believe they would react, should they become disabled. I often hear, “If I ever get to the stage where I can’t wipe my own arse, I want someone to shoot me!”

Modern culture has barely inched forward from the medieval idea that good virtuous people are fit, healthy and beautiful and those who are not just haven’t put enough effort in with their prayers, penances and press-ups

To show oneself to be “fiercely independent” is a virtue in our culture, but this is only the kind of independence that white, middle class, non-disabled men typically enjoy; they don’t spin their own thread to weave their own cloth to make their own clothes – they often have someone else make their meals, clean their home and even care for their children. They may not know how to change a fuse, let alone collect firewood and start a fire without matches. But you know, the ability to reach one’s hand to one’s own backside is what makes life worth living.

The greatest challenge of being disabled is to untangle those problems which are a direct result of the way our brains, minds and bodies operate, from those problems which have other causes. This is a challenge because we live in a culture which treats people and their medical experiences as one and the same; modern culture has barely inched forward from the medieval idea that good virtuous people are fit, healthy and beautiful and those who are not just haven’t put enough effort in with their prayers, penances and press-ups. It is also a challenge because culture expects our lives to be rubbish and often obstructs us in our attempts to make them better.

I first considered the idea that maybe I should end my life when I was about 17. This stopped around my mid-20s. During this period, I had three episodes of depression where I was a danger to myself, but in between times, when I was reasonably mentally well, the idea of my impending death was something of a comfort to me. This was because my life was very difficult and tragically, I misunderstood the nature of this difficulty.

I had been sick since I was 15 and even in my early 20s, there was still some sense that if I only did the right thing, worked hard enough and believed in myself, I could make myself well. Nobody had attempted to disillusion me. In fact, when I began to talk about the future as if I might remain ill, I was warned against “giving up”. Stay positive, they told me.

It is not uncommon for medical professionals to lose patience with patients they cannot cure

This meant that every time my health plateaued, let alone deteriorated, it felt like a personal failure or even a punishment. I was fortunate that no one exactly blamed me, but others in my life encouraged me to examine my behaviour, my routine, my diet and my attitude when things were going wrong. (I was also very lucky with doctors; it is not uncommon for medical professionals to lose patience with patients they cannot cure.)

When I came out of school at 15, the priority had been for me to try and catch up with my school-work as soon as possible. Attempts to do so had proved so costly in terms of time, energy and emotion, that I was still focussed on “completing” my education almost ten years later, despite very little progress. As time went on, I became torn between the terror of a life where the summit of my academic achievement was just 3 GSCEs and the terror of spending another ten years working myself sick to get qualifications I would probably never use. I didn’t know how to see myself if I wasn’t a student but I wasn’t able to do paid work.

I was in an abusive relationship (half of all disabled women experience domestic abuse). I was shouted at every day, there was often violence and I was constantly criticised or harangued for real and perceived mistakes. Symptoms of my condition; physical weakness, poor co-ordination and cognitive dysfunction were treated like personal slights to my partner, as if with my illness, I was goading him. I believed that I was very difficult to live with and my health was a big part of that.

I could carry on listing really big problems – periods of profound isolation, poverty, inaccessible housing, inadequate care and so on – all of which had something to do with my health but were not caused by my health.

My physical health is not much better now (although far more stable), yet most of these problems have vanished and the others are very much diminished. Meanwhile, I realise how very necessary I am; when I was younger, I believed the dominant narrative about my parasitic existence. Folks who seemed to value me were simply being ‘kind’.

In more than one case I have read about, folks have been described as choosing suicide because they were afraid of “ending up in a wheelchair”

I have nothing but compassion for disabled Britons who have died or want to die at clinics in Switzerland. You might expect the overarching theme of these deaths to be unendurable symptoms, but while there are such cases, the most common stated motivation in newspaper stories I read (which I don’t necessarily trust as fully representative) is the fear of a future with more significant physical impairments. In more than one case I have read about, folks have been described as choosing suicide because they were afraid of “ending up in a wheelchair”.

Had I been only a little less lucky, I could have died by suicide in my early twenties. The pain of my loss, the big beautiful me-shaped hole in the lives of my loved ones and the world in general would never have gone away. But folk may well have comforted themselves with the idea that I did the right thing for me; I would always be in pain. I would never have a regular job. I would never have a normal life. Even when a famous person dies by suicide, we often see fans asking, “Maybe they were sick?” by which they mean physically, as if that renders their death suddenly meaningful and rational.

I will link to one happier story about assisted suicide; Colin Campbell had booked up his death in a Swiss clinic and spoke out about this decision in support of assisted dying legislation. He has since deferred his death after a new friend helped him to get a ground floor flat, a suitable care package and a mobility scooter. Campbell’s life or death is not a matter of points to be scored in an argument. What is more relevant is that a person who cannot easily get in and out of their own home, who hasn’t got the kit they need to move around outside independently and who is not getting the help they need to live has a whole heap of problems on top of the pain, loss and fear associated with a chronic degenerative illness.

That second set of problems – the inevitable effects of chronic illness – are not to be underestimated. But that first set of problems is plenty enough to make a person wonder whether their life is worth living. Way too many disabled people are living with both sets of problems.

We’re still fighting for our right to live

Fifty years ago, British LGBTQ+ people could be diagnosed with medical conditions for which psychiatrists offered various treatments. These treatments varied only in degrees of barbarity – these were things which would make a torturer rub their hands with glee and which folk would never normally consent to.

But only some LGBTQ+ people knew that they were not the problem; many – if not most – believed, as their culture told them, that their nature made them miserable (something easy enough to believe as a teenager in the 1990s, let alone decades earlier). And so people, especially gay men, who were more likely to find themselves exposed by continued police persecution, agreed to these “therapies” because they wanted so much to be ‘normal’.

Since nothing worked, those who were not lucky enough to see through the great lie often died by suicide. And had the state sanctioned euthanasia for LGBTQ+ people fifty years ago (who were all unwell, after all), hundreds of thousands more people would have died. There may not have been enough survivors to bring about the gay liberation movement in the UK and everything that followed. Grieving friends and families would have concluded that it was the best thing that could have happened to their loved ones – not because they wanted them dead, but because the idea would have made these deaths less painful.

There are big differences between LGBTQ+ people’s and disabled people’s struggles, as well as further similarities – we all remain pathologised, fetishised and are over-represented among fictional villains. But these days, despite significant battles yet to be won, most liberal-minded people believe that being LGBTQ+ is natural and benign and that any trouble we experience around our sexual orientation or gender identity is someone else’s problem (perhaps unhelpfully, we now pathologise this prejudice as “phobia”).

Disabled people have not made it so far. We’re still hearing that we’re the problem. Assisted dying is not like other freedoms we’ve gained where one can simply say, “Well, if you don’t want help dying, you don’t have to die!”

We’re still fighting for our right to live.

Right now in the UK, austerity is nudging people – especially poor and disabled people – towards the edge, with poor working conditions, a humiliating and punitive benefit system and increasingly expensive and insecure housing

The idea that it was ever a crime is ludicrous to modern imaginations, but suicide still holds a unique position in the midst of non-criminal activity. If someone is attempting suicide, one can use physical force to prevent them. If someone is mentally unwell and very likely to attempt suicide in the near future, doctors may incarcerate them, medicate them without their consent and remove many basic freedoms (even the right to vote!). And – for now – someone who encourages or helps a person to end their own life is a committing crime, even if prosecution is unlikely.

Suicide is the leading cause of death among women aged 20-34 and men aged 20-49. Suicide among university students is at a record high. Yet the aim to eliminate deaths by suicide is not an impossible fantasy; these deaths are, to the greatest extent, preventable.

Right now in the UK, austerity is nudging people – especially poor and disabled people – towards the edge, with poor working conditions, a humiliating and punitive benefit system and increasingly expensive and insecure housing. Safety nets beyond the benefit system – everything from legal aid and Citizens Advice Bureaus to refuges and hostels – have lost funding and inequality is growing. When people topple on that edge, mental health services vary hugely according to a where a person lives.

We can campaign about this. We can address the culture around us where, despite stereotypes, even women often struggle to talk about our mental health. Where every day conversations can reinforce the idea that personal misfortune should be a source of personal shame, whether in love or money or health or anything else. We need to learn the warning signs for untreated or spiralling mental illness and learn how to react to these things – in both ourselves and others – in much the same way we learn to watch out for lumps or itchy moles.

We can campaign for disability liberation. We can ditch the inspiration porn from our Facebook feeds, stop sniffling over disabled children once a year when the telethons are happening and consider how to make the lives of all disabled people better, not through charity which makes us feel warm and fuzzy, but through social change which requires perseverance and humility.

And after all that is done – when suicide is an extraordinary occurrence rather than a daily tragedy, when nobody is ever stuck indoors because they can’t afford a wheelchair and when isolation is not considered an inevitable part of disabled life or old age – only then might we have time for a conversation about assisted dying.

The picture at the top of the page is an upper-body shot of a black woman, possibly with restricted growth, in a wheelchair. She is wearing a white top, has sunglasses perched on the top of her head and is looking directly at the camera with a big smile on her face. The image was taken at Paris Pride in 2008 by Philippe Leroyer and is used under a Creative Commons license.

Comments From You

tom hulley // Posted 20 December 2017 at 2:13 pm

Thank you. Your article is inspiring.

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