The Autonomy Disguise

A completely blacked out image.

RIP to all the casualties of society’s most recent atrocities towards disabled people.

Last week, I read an article published on 30 April by The Spectator, in which the matter was discussed of Canada indiscriminately allowing people with disabilities to be euthanised. For various reasons, many of these disabled people can simply not afford to keep on living (with or without dignity), which is the only reason that they opt for assisted suicide in the first place.

Fair warning to those who may feel that my style of advocacy is too angry. This is going to be an unapologetically angry article. I have no time for patiently entertaining the notion that there is more than one justifiable side to a story in which a population group is essentially being forced or coerced to die. This is nothing more than convenience for the nondisabled, being disguised as autonomy for the disabled.

Both the topics of assisted suicide and of poverty have been fresh in my mind recently, given that my previous two blog posts touched on euthanasia (the review of Me Before You in which a man chooses death above disability) and poverty (the difficulties faced by disabled people in finding employment). I happened to come across the article about the situation in Canada on a disability community Facebook group of which I am a member, and my jaw dropped.

It all started in 2015, when Canada’s ban on assisted suicide was lifted. The following year saw the enactment of legislation allowing euthanasia for people with a terminal illness, in the case where the person’s natural death is reasonably foreseeable. Five years later, Bill C-7 was enacted, dropping the “terminal illness” and “reasonably foreseeable” conditions altogether, and allowing anyone suffering from an illness or living with a disability which cannot be relieved under conditions that the individual considers acceptable to choose death. In addition, these individuals can die for free with funding from the government, due to the option of making use of ‘medical assistance in dying” or MAID.  What a perfect example to use in explaining to someone who does not understand the concept of a slippery slope!

The Canadian government claims that this law is all about prioritising the autonomy of disabled people. I, as well as Canadian disability rights groups that opposed the law and were ignored, believe otherwise. You see, autonomy is all about having a choice. The Canadians who have opted for assisted suicide so far felt that they had no other choice.

A woman in Ontario (who the media refers to as Sophia) diagnosed with a chronic condition called multiple chemical sensitivities (MCS) chose death after the failure of her desperate attempts to find affordable housing where she would not be exposed to chemical cleaners and cigarette smoke. She, her supporters, her friends and her doctors made multiple phone calls and wrote numerous letters over a time period of two years to officials on all levels of government, fruitlessly asking for assistance. Eight days before Sophia’s death, she filmed a video which was eventually shared with the media, in which she said: “The government sees me as expendable trash, a complainer, useless and a pain in the ass”. The president of the Environmental Health Association of Québec, who spoke to her on a daily basis after learning about the approval of her application for assisted suicide said: “It’s not that she didn’t want to live, she couldn’t live that way.” To me, that doesn’t sound like someone with autonomy.

An article published by Maclean’s magazine entitled “Dying for the right to live” tells a similar story of a woman with multiple disabilities (referred to as Susan) who chose a lethal injection above an existence in which she could not afford to eat. Food banks were not an option, due to dietary restrictions linked to her disabilities. She said: “An increase [in income support] is the only thing that could save my life. I have no other reason to want to apply for assisted suicide, other than I simply cannot afford to keep on living.” In the minutes before her death, Susan asked medical staff to make a call to the prime minister in which she would plead her case. His response would determine whether she would live or die. I do not know if she ever got through to the prime minister. I do know that she died.

Another article tells the story of a woman from VANCOUVER  (referred to as Madeline) who could no longer afford the medications and services that made her chronic pain bearable, and who was already deep in debt. She said that she chose assisted suicide, not because she wanted to die, but because her income was not enough to keep her under a bearable pain threshold.

Yet another article mentions a 35-year-old man who resorted to euthanasia. When his family visited him at his care home to say goodbye, they were horrified to find him in a room with urine and fecal matter on the floor and in his bed, as well as dark specks on the walls and in the sink. His brother believes that the deplorable conditions under which he was living had a massive impact on his decision to die, rather than to endure such indignity.

Not that assisted suicide should be pushed as the answer for people with mental health issues such as depression, but both Madeline and Susan said that they were not at all depressed. Susan said: “Every time I look out the window, I see joy, I feel happiness and I’m really a happy, contented and chill person.” A happy, contented and chill person is highly unlikely to want to die by choice, unless they feel that there is no other option. Both Sophia and Susan had another reason for choosing death though. Sophia wrote in an email to friends: “If my death helps to show the government that those of us with MCS will keep on having MAID if they don’t act soon, then I’m glad I could help someone else not have to suffer the way I have.” Susan expressed her disappointment in a society that undervalues the contributions of the disabled and doesn’t consider them worth financially supporting. She said: “I’ve received awards and accolades for my community work.” But, “I wasn’t earning a weekly pay, so I was considered useless to society.” Both of these women partly considered their deaths to be acts of protest. Personally, the only autonomy that I see in their decisions to die is exactly that: The message they are sending to the authorities that be. It is absolutely shameful that life is the price tag attached to the mere possibility that one just might be heard.

So how is it that the disabled find themselves in these positions in the first place? My bet would be that the Canadian government just vastly underprioritises the livelihoods of their disabled citizens. Palliative care is only available to a minority, with many disabled people finding themselves unable to access it. Of course, Covid created a massive public health crisis, and Canadians who receive the disability tax credit were extended the opportunity to apply for a one-time payment of 600 dollars. However, in only one example of how difficult it is for Canadians to be approved for this grant, a disabled student told the media that her doctor’s response to her request that he fill out the relevant form was as follows: “You’re not disabled enough…You have to be sitting in the corner drooling to be able to get this.”

To underline to what extent the Canadian government underprioritises disabled people, the original article I mentioned by the Spectator points out that university students received 5000 dollars in additional assistance from the government during Covid, whereas disabled people received only 600 dollars.

The most damning evidence, in my opinion, of the reasoning behind MAID having nothing to do with the autonomy of disabled people is in a report published by Canada’s Parliamentary Budget Officer about the cost saving that MAID would create. The report dispassionately states that Bill C-7 would result in additional net savings of 62 million dollars per annum, and although healthcare is expensive, assisted suicide only costs taxpayers 2,327 dollars per case. No wonder Sophia and Susan both made statements that indicated that society was making them feel like burdens on the system. The state would pay for them to remove themselves, but not to make it possible for them to stay alive.

To make matters worse than they already are, next year, people suffering from mental illness will also be eligible for euthanasia. This is another demographic that is disproportionately poor. There is also talk of allowing mature minors to have access to assisted suicide options. The problem that I see with this is that I do not believe that either group are necessarily able to rationally make such a decision. At what point did it become okay to essentially encourage teens to take their own lives? At what point did society decide that it is no longer important to acknowledge that mental illnesses such as depression have suicidal ideation as a symptom, and that it is no longer necessary to try one’s utmost to proverbially talk people who are in this dark place down from the ledge?

I have suffered from depression for a large portion of my life. It was worst when I was a teen. Now that I am in a much better space, I recognise that I was entirely irrational as a result of my mental illness. I am glad to be alive. Life holds so many opportunities. Death holds only one: rest. But I will have enough time for rest after I’ve experienced all there is to experience here first. It comes for us all eventually, and it is final. As a teen, I had less life experience, I was not in my “right mind”, and I was never more pro the idea of euthanasia. Now, I have lived many more years. They held many tears, but they also held moments of happiness and pleasure and sunshine that I would gladly cry each tear to pay for a thousand times over. They also held lessons. One of those lessons was that my life is immeasurably valuable.

Thinking of a very bright, high-achieving, popular and gorgeous friend of mine who committed suicide resulting from severe depression as a teenager, I can’t help but wonder if she wouldn’t feel the same way that I do now if she had gotten the help she needed. Make no mistake: she needed help, not government sanctioned enablement.

In South Africa, there is currently a court case underway in which a doctor and her patient are seeking to have euthanasia legalised. Given that it has already become apparent that the law in Canada is affecting the poor, it stands to reason that this will be the case in South Africa too. We are a developing country, and millions of people live in poverty. A massive proportion of these people are disabled, and healthcare, as well as government financial assistance for people with disabilities lags far behind what is available in developed countries such as Canada. Right now, the legal challenge only pertains to euthanasia for the terminally ill. However, as is clear in the Canadian case, this is a very slippery slope. How long until scores of poor people are lining up in front of hospitals to choose death, and what will our government decide is more important? The lives of citizens, or keeping the money that could have been used to save them?

I understand that arguments can be made for there being a place in society for allowing people the right to decide what happens to their own lives when they can undeniably prove that they are of sound mind. Yet, I cannot see how this could ever be a viable option in a society that is as unequal as ours, where so many don’t have access to the most basic of resources.

Finally, I believe that, regardless of the quality of life (which can always improve), each life has inherent worth. Like Linkin Park’s late great Chester Bennington sang in response to the question: “Who cares if one more light goes out in a sky of a million stars?” I too say: “Well I do.”

Me After Me Before You

In a park, Lilley sits at the very top of a multicoloured jungle gym consisting of metal poles in a geometric structure, as if looking down from a throne. She is wearing a black long sleeved top with a v-neckline and dark blue jeans. She is also wearing a long chain around her neck with a symbol of a three-headed dragon on the disc hanging off it. Some of her long blonde hair is over her left shoulder and the rest flows down her back.

There are few films addressing the topic of disability that have generated quite as much controversy as Me Before You, adapted from the Jojo Moyes book of the same name and starring Emilia Clarke and Sam Claflin in the lead roles.

I hadn’t watched it at the time, but I am one of those people who has a truckload of useless pop culture knowledge without actually having consumed the associated media, so I had opinions. I, like many others in the disability community, did not approve of the message of this film. However, after three of my girlfriends who had watched and loved the movie (one of whom is disabled) told me that I shouldn’t criticise something that I haven’t actually watched, I decided to give it a bash. I thought I could at least have fun mocking the cringe, and perhaps even turn it into a drinking game where the rules would involve drinking every time something ableist is said or portrayed. After a careful watch (I decided to save the drinking game for a second viewing during which I wouldn’t have to pay attention for the purposes of a review) I came to two conclusions: first, that the acting was enjoyable and the storyline wasn’t as terrible as I had initially thought (up to a point) and secondly, that I was completely right about the main message being plain wrong.

I will begin with a quick synopsis, so a massive spoiler alert is in order. Louisa “Lou” Clark gets a job as a care assistant to ex banker and adventurous sportsman Will Traynor, who became quadriplegic after being hit by a motorcycle. Will’s mother hopes that Lou’s bubbly disposition will cheer him up. Will is very bitter and jaded, and he is initially extremely rude and cold towards Lou. After some time and some conversations, Will warms up towards her and they become close. Lou learns that Will is worldly and cultured, which contrasts with her own simple life. Lou overhears an argument between Will’s parents in which it is revealed that Will intends to go to Switzerland for assisted suicide (where this is legal) after a six month period which he conceded to his parents. The reason for this is that Will is unable to accept life as someone with a disability, after all of the rich experiences that he had as a nondisabled man.

Lou decides to try to change his mind and to show him that life is still worth living in the remaining months, and takes him on a series of adventures including a luxurious trip. In this time period, Lou and her boyfriend break up, and she also attends Will’s ex-girlfriend’s wedding with him. They dance, with Lou sitting on Will’s lap in his wheelchair, and they fall in love.

However, the fun and games are cut short when Will reveals to Lou during their trip to Mauritius that he still intends to go through with the assisted suicide plan. He wants her to live a “full life”, and believes that a life with him would only be half a life. Lou is devastated and resigns, and refuses to see him until her father convinces her to visit him. She finds out he is already in Switzerland, so she follows him there to support him and to say goodbye. Jumping forward in time by a few weeks, Lou reads a letter whilst sitting in Will’s favourite café in Paris. Essentially, Will tells her in the letter that he has left her enough money to live her dreams, and that she shouldn’t think about him too often, but go forth and live life to the fullest.

Let’s start with the things I enjoyed. As I said, the acting was good, which is to be expected from such a stellar cast. Being a total fantasy nerd, I was excited to see Emilia Clarke (who played Daenerys Targaryen in Game of Thrones, one of my all-time favourite characters) portraying Louisa Clark, as well as Sam Claflin portraying Will Traynor (he played fan favourite character Finnick Odair in the Hunger Games franchise). He is yet another nondisabled actor portraying a disabled character, which is problematic in and of itself, but that’s a topic for another day. Of course there was also the amazing Charles Dance portraying Will’s father Steven (also starring in Game of Thrones as Tywin Lannister) and Matthew Lewis (who of course played Nevil Longbottom in the Harry Potter films) portraying Lou’s boyfriend Patrick.

There was also some pretty okay humour in the first three-quarters of the film which made me chuckle. I am not referring to when Will tries to make Lou uncomfortable when they first meet by making moaning and wheezing sounds that are stereotyped to be sounds made by most disabled people. This was supposed to make the audience laugh, but it fell flat for me.

Regardless, despite the tired “girl helps bitter disabled dude chill a bit and falls in love with him” trope, the first three-quarters of the film was not unbearable. It was actually quite enjoyable. But then, it all goes to hell in a handcart.

More on the last quarter of the film (the most problematic part) later, but first I would like to address the initial issues that I have with the story. Again, there’s a care assistant (which could be considered to be a position of power) interacting with someone who is portrayed as being able to do very little for himself. He is angry and jaded about becoming disabled. Okay, fair enough. Some people do go through extreme grief after having experienced such a loss, and this can be expressed through anger and bitterness. The issue is that so many films featuring disabled characters portray them this way though, and there are few where the disabled individual is actually okay with their disability, or is actively working to come to terms with it.

 There’s a scene where it is noticeable that the care assistant starts to fall in love with the disabled person as she is tending to him when he is sick. It is implied that the acts of seeing him vulnerable, being worried about him, and “taking care” of him are what unlock these loving feelings. It is completely possible that a care assistant might fall in love with a disabled person through seeing their vulnerabilities and caring for them. It is worth noting that the opposite of the traditional understanding of transference (in a case where a client falls in love with their therapist) can also occur, where a therapist or someone in a similar position might develop feelings for a person through seeing their most personal, vulnerable sides. However, I would argue that this can also be seen as too much of a trope. Instead, it might have been less problematic if the nondisabled character was portrayed as falling in love with the disabled character under neutral circumstances, or even as a result of learning something about a cool capability that the disabled person has.

I would not be properly covering the topic of tropes if I didn’t address the fact that Lou is an absolute “manic pixy dream girl.”. This is essentially a girl in film or television who is quirky, energetic, playful and childlike, high on life, and of course attractive, and shows the broody male hero what wonders the world holds and livens up his life. Lou, with her bumblebee striped tights and other wacky colourful clothing, as well as her relentless optimism, is a perfect example.

Now, on to the final quarter of the film. One of the strongest messages throughout the story is summed up in a sentence spoken by Will’s father: “Will needs to be allowed to feel like a man.” How do I even begin to explain the extreme problematic nature of this sentence? Firstly, “Will needs…”: Who gets to decide what Will needs? Apparently the nondisabled characters, because he wasn’t asked about his needs. “Will needs to be allowed…”: To be allowed? Who is giving him permission, and why does he need it? “…to feel like a man”: To feel like one? So he’s not a man? According to the characters in the film, including Will, he is not. He is the shadow of a man that once was. The whole film revolves around the fact that Will was so much more human before his accident. So much more of a man, which apparently one can no longer be when disabled.

This is further reflected in his conversation with Lou, in which he tells her that he still intends to go ahead with his assisted suicide plan. He says that he can’t have her tied to him, because other men could offer her so much more. He even implies that he can’t see her naked or interact sexually with her, completely ignoring the fact that quadriplegic people are often perfectly capable of having satisfying sex. Aside from perpetuating the idea that disabled people are asexual, the whole conversation perpetuates the idea that a life with a disabled partner could never be as fulfilling as a life with a nondisabled partner. I have written extensively on my issues with this idea before, pointing out that disabled partners offer as much to their relationships as their nondisabled counterparts. This film shows us a character who is clearly smart, cultured, highly attractive, Kind (eventually), and a multimillionaire to boot, and communicates to us that this is still not enough to offer a nondisabled partner.

On a side note, Will’s behaviours and decisions can be seen as sexist. He doesn’t care about Lou’s opinion, or what she wants. Lou wants to be with Will, but he decides on her behalf that a disabled partner is not enough. He is also constantly putting her simple lifestyle down, and telling her how she should be experiencing and doing so much more, despite the fact that she seems perfectly content with her life the way it is. This is just another man telling a woman what’s good for her.

As we already know, Lou fails in her attempts to convince Will that life is worthwhile. He goes to Switzerland anyway, and goes ahead with assisted suicide. Lou eventually comes around to his point of view, and the decision is sold to us as a disabled person taking ownership, displaying autonomy, and deciding for himself what he wants to do with his life, even if that decision is to end it. Here’s the problem. Depression caused by grieving a loss should not be pushed as a good reason to commit suicide. The world should not be receiving the message that disabled people should act as martyrs, conveniently removing themselves from society so as to no longer be a burden on their nondisabled families, friends and lovers. It is not “better dead than disabled”. Most people with disabilities would much rather be living than dead, thank you very much. Our lives are rich, and they are worth as much as any nondisabled life. They should not be written off.

You may be thinking: “But each disabled person is different, so shouldn’t Will have a right to his own opinion about his own life? There are people who feel the same as he does, after all, and they should be represented.” Yes, they should be represented, but the problem is that they are represented so very often in the media, and there is a massive imbalance. When last did you see a movie or show in which there was a disabled character who was just another character living life, or who’s story didn’t centre around their disability? Imagine if one of the characters in Friends or How I Met Your Mother was disabled, but their story was exactly the same, perhaps barring a few experiences of inaccessible environments or exclusion? I’m willing to bet my remaining eyesight that you probably haven’t seen such a show or film, and I would argue that before we see more sob stories about how awful a disabled person’s life is on screen, we should see more representations of disabled people whose disabilities are just one of their many characteristics.

When I decided to watch this film, I made up my mind to try to be open minded. Who knows. Maybe, through studying Will’s logic, I could come around to the idea that this was the best decision for this specific individual. Needless to say, this was not my conclusion. Will acknowledges that he “gets” why a disabled life could be fulfilling for some people, but as he says: “I can’t be the kind of man who just accepts this.” What kind of man is that? He seems to be implying that a weaker man could accept disability. However, in my opinion, the kind of man who could move through the grieving process, then go on to accept his disability and find different ways of living a rich life is the stronger man. Will, with his refusal to even try to understand this concept, and his refusal to properly accept the love of a woman who wants him not despite, but with his disability, is a coward.

My final criticism of the movie is it’s actual focus, because make no mistake, it isn’t really about Will at all. It is about Louisa, and how she was changed by meeting Will. Will was not truly changed by meeting her. He went ahead with his original plan anyway, despite her best attempts to make him change his mind. His views of what life with a disability could be, did not change. In contrast, after meeting Will, Lou became interested in culture and an adventurous life, and suddenly she had lots of money with which to “live life to the fullest”. In his final letter, Will says that Lou shouldn’t think of him too much. This pretty much clinches it. It was never about him. It was about the nondisabled character all along, and the disabled character was just a catalyst for her growth.

So, to summarise, me after watching Me Before You equals highly unimpressed, to say the least. Hollywood, please, for the love of popcorn, do better.