The Scapegoating of Disabled Voices & Activism

I really wish I could stop talking about Me Before You, but it keeps being a source of topics that require discussion. At least this time I can leave behind the book itself, I will instead try and tackle some of the things that have come out of the disability community’s backlash against the novel and film.

In my original post on the book entitled Why are You Complaining? Some People Actually Feel that Way. I tried to take on the all to common defensive argument that as long as some people actually experience certain things or opinions, any and all fictional representations of those experiences is acceptable. I wrote,

Here’s the thing, there is a big difference between actual human people having feelings about their actual lives and experiences of disability (which I’m not here to criticize) and a fictionalized account written by someone who isn’t disabled and which heavily romanticizes very problematic stereotypes about disability (which I am absolutely here to criticize).

Not surprisingly, people still tried to jump on the “but some people feel that way” bandwagon. The thing is that beyond outsiders pointing to their general existence, the voices of disabled people with nonterminal conditions who are or think that they might one day want to seek assisted suicide were glaringly absent. So I went looking for them.

It wasn’t easy, disabled people who are contemplating assisted suicide or who even simply have a more permissible attitude toward it often feel alienated from the rest of the community (which is a problem that requires addressing). Any discussion that includes an individual suggesting that they might one day want assistance with dying (or even expressing a not hardline stance against it) is almost immediately confronted by someone saying,

  • It is not better to be dead than disabled
  • There need to be more treatment and service options for disabled people
  • Ableism teaches newly disabled people to hate themselves
  • The risks of assisted suicide being legalized are too great for disabled people who will be at risk of coercion.

I did however eventually manage to speak to a few people on Twitter. I’m not going to link to any of them because I have witnessed some of the backlash they experience and don’t want to add to it.

The thing is, the more I spoke to them, the more it became clear that these people did not remotely fit into the strawmen arguments of people saying “but some people actually feel that way”, The people saying this, do so with the uninformed conviction that any disabled person who contemplates assisted suicide, does so for the same reasons as the fictional Will Traynor, that reason is that life with a disability is not worth living.

The thing is, not a single person I spoke to agreed. The primary reason for considering assisted suicide was pain (side note: anyone who tries to rebut this in the comments with “they just need better pain management” or “this is just a reason for more pain management research” will have their comments deleted). In every single case, they unequivocally denied the idea “that it was better to be dead than disabled”, They were also all in agreement that the book and film Me Before You was a horrible representation of disability and why someone might want to seek assisted suicide.

Most also expressed concerns about the legalization of assisted suicide that mirror those of people who are fully opposed to it. One going so far as to say that despite her own contemplation of assisted suicide, it should remain illegal because the threat to disabled people was to great to balance out the good it could do for the few who really need it.

At no point did I come across a real life Will Traynor, whose interest in dying mirrored the fiction created by Jojo Moyes. That is not to say that they don’t exist, I’m sure they do and I’m also sure that they don’t hang out on disability twitter, so the odds of my finding them are slim. Which is really to bad because then it might be possible to deconstruct how and why they feel the way that they do. It is hard to fight an ideology that we can’t even engage with. This is one of the many reasons that I think the wider disability community needs to start being more accepting of and dialoging with the people in our community who contemplate assisted suicide, because they exist in opposition of wanting death solely because of disability. The add a viewpoint that actually reinforces and maintains the concerns of people campaigning against assisted suicide and destabilized the all to common mainstream media view that it is disability for its own sake that should be escaped from through death.

On a more personal note, I have also found my words on Me Before You used to reinforce the pro-life agenda. Which is both abhorrent to me as a pro-choice feminist but also odd because as my quote above suggests, I don’t actually condemn anyone’s personal feelings on assisted suicide but rather how harmful fictional representations of assisted suicide and disability can harm and misrepresent disabled people.

The pro-life lobby is not an ally I want, they care far more for their political and religious agenda than they do for disabled people. They don’t affirm the lives of disabled people or care to fight to stop the ableism or lack of services that affect our lives, they also put me in the awkward position of defending Me Before You as their hyperbole on the subject can only undermine, thoughtful informed criticism of the story. One piece that linked to my blog said,

I haven’t (and probably won’t) see the movie, because I prefer to remember Finnick losing his life in a heroic act of self sacrifice in the fetid sewers beneath the Capitol, not (spoiler alert) committing suicide while his approving-yet-heartbroken girlfriend holds his hand, and the bottle of pills.

Um, Louisa never supports Wills decision, saying she comes to terms with it is better but also pushing it. Also she is also not holding the bottle of pills. Also that’s not how assisted suicide works. Pro-lifers like this blogger like to use buzzwords like “the essential value of life”. They however seem to care much less for the quality of that life because they don’t talk about the need for services, ableism or poverty. They only care that they can slot disabled people’s voices into their agenda. These are the same people who use children with Down Syndrome to try an limit access to abortion. With the same platitudes about the intrinsic value of life and no words on making the world welcoming for those children.

In this case people slot our words into their arguments, while in the case of the “people feel that way” crowd, they just assume they know what the arguments are. In neither case does it do justice to our opinions or our activism. In most cases it actively devalues them by either misrepresenting them or shrouding them in hyperbole to shore up arguments that we didn’t sign up for.

In all cases we are straw men whose actual voices and opinions don’t matter as much as the one’s that they can put into our mouths.

 

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Why Are You Complaining? Some People Actually Feel That Way: A Critique of Me Before You

Warning: This post includes comprehensive spoilers for the book Me Before You, a book that deals with disability and assisted suicide. It also deals with sexual assault.

 

It has taken me months to get all the way through Jojo Moyes’ 2012 novel Me Before You. This protrated reading can be explained by two things. I’m a PhD student and don’t have a lot of free time for reading anything that isn’t directly related to my studies and the fact that this book made me feel violently ill. I hated it, well before I got to the ending. The only reason I finished it is because the movie adaptation is coming out next month and I felt the need to thoroughly explain why it is so problematic and why I find the excitement over the movie adaptation so troubling.

I only became aware of the existence of this book after the trailer for the film adaptation began making the rounds of Facebook, always accompanied with captions like “I can’t wait to see this” or “This is going to give you all the feels!!”. Basically all of these posts were coming from nondisabled people. The trailer (which gives away basically the entire plot) already troubled me (see below).

It’s a film about disability and assisted suicide which is troubling enough but is made worse by the fact that it uses a nondisabled actor (Sam Claflin of the Hunger Games franchise) in the role of a quadriplegic (to read more about how this is problematic see what I’ve written about cripping up here, here, and here). Now I’m sure this casting decision was made because after an exhaustive casting search, the producers could find no self-respecting quadriplegic actor willing to be associated with this bullshit and nothing whatsoever to do with the fact that they definitely didn’t even look at quadriplegic actors *sarcasm*.

Before I get into my thoughts on the book, I want to deal with what I expect is the most common rebuttal to disabled people criticizing problematic media portrayals of disability, particularly around assisted dying.

A disabled person will identify problematic themes in the media portrayal and almost immediately upon voicing those concerns, someone will pop up and say “But, there are disabled people who actually feel that way, so who are you to criticize?”

Here’s the thing, there is a big difference between actual human people having feelings about their actual lives and experiences of disability (which I’m not here to criticize) and a fictionalized account written by someone who isn’t disabled and which heavily romanticizes very problematic stereotypes about disability (which I am absolutely here to criticize). I am also here to criticize the fact that the nondisabled media heavily over-represents disability discourses that fit into ableist stereotypes, which makes it harder for the viewer to differentiate between the feelings of individuals and the experiences and feelings of all disabled people. So if you find yourself asking that question, also ask whether you are hearing other opinions and whether those opinions are coming from actual disabled people or are they the fictionalized imaginings of nondisabled people.

Me Before You falls into the latter category and is rife with deeply problematic themes which include.

  • The constant reinforcement of negative feelings towards the experience of disability from  nondisabled characters with rare and problematic exceptions.
  • What sort of negative life experiences from which someone can move on and live a good life.
  • The constant juxtaposition of disability vs. nondisability
  • Horrible representations of disability and sexuality.
  • What the outcomes after the death of the disabled character meant for the other characters.
  • The impact of how fictionalized accounts of negative experiences of disability have on the disabled community

In brief Me Before You tells the story of Louisa Clarke who is recently unemployed and whose family relies on her having an income. She takes a job of a companion to the wealthy Will Traynor who was paralyzed after being hit by a motorcycle. Unknown to Louisa, she has been hired primarily for suicide watch as Will’s parents are concerned that he will make a second attempt at suicide. Also unknown to Louisa is that Will intends to seek physician assisted suicide after six months (his parents are aware of this and have agreed to assist him in going to where it can be legally acquired). After Louisa eventually discovers Will’s intentions, she decides to use the remainder of the six months convincing him to live. He on the other hand is both intent on dying but convincing Louisa that she is not living up to her full potential. During this period, they fall in love but ultimately Will decides to go through with his decision to die. He leaves money to Louisa so that she can be free of the financial insecurity which led her to work for him in the first place and live her life to the fullest.

When I was still in early stages of reading the book two things struck me. First the repeated disgust expressed by Louisa for assisting in the toileting needs of disabled people. I know it’s something that many people would feel genuinely uncomfortable with but it is reiterated so frequently in the first three chapters of the book as to leave the reader with the distinct impression that disabled people and their needs are disgusting.

The other thing that struck me and genuinely made me furious is that Will’s mother does not tell Louisa that she is being hired for suicide watch. It is heavily implied and even if I didn’t know the outcome of the novel before I started reading it, it is readily identifiable to the reader but not so much in a way that is clear to Louisa. This is really something a person needs to know. Not only to do their job effectively but also so that they can be aware that the person they work with might self-harm or commit suicide. This is for the benefit of the employee so that they can make an informed decision about whether or not they want to put themselves in a work environment that has the very real potential to be traumatic.

Instead the fact that Louisa doesn’t know just adds tension for the reader and the inevitable and completely avoidable drama that ensues when Louisa overhears Mrs. Traynor tell Will’s sister about his intention to seek assisted suicide, which is when Louisa realizes not only why she’s been hired but that Will is going to die regardless. Needless to say, she doesn’t take it well.

Manufactured drama around something life and death with the potential to be harmful to the person who doesn’t know and reasonably should, is deeply problematic. While someone shouldn’t feel compelled to publicize their desire to seek assisted suicide or the fact that they attempted suicide when the former request was denied. There are people who do need to know, not only to do their jobs properly but to protect themselves emotionally. The Traynor’s also hide this fact from Nathan, who take care of Will’s personal and medical needs and this is presented as normal and acceptable.

When it comes to the book explaining why Will wants to die, he actually has very little to say on the matter beyond that it is his choice and that he can no longer find value in his existence as it does not match what he used to be able to do. He also (completely reasonably) chafes at the negative reactions he gets from other people which range from everyone thinking, they know how to treat his medical condition to just being generally uncomfortable in his presence.

The main source of rationalization for why he should want to die actually comes from other people who are usually (with one exception of a guy on a message board) not disabled themselves going on about how if “they were like that, they’d want to die too”. even Nathan, Will’s care aide says it.

Louisa (because let’s be clear this book is about her, not Will) is constantly confronted by people who reinforce the idea that it is better to be dead than disabled.

This trend of people being either just uncomfortable with or actively horrified by disability is almost universal. Generally the best reactions will gets are paternalistic and pitying. Though admittedly Louisa’s parents’ don’t support him dying. Though that seems more a reaction to the effect his death will have on their daughter than him. Her mother compares Will to the only other disabled character in the book, Louisa’s grandfather, who unlike Will is described as not having the ability to make decisions for himself. The comparison is weak.

There is only one character who treats Will like a human being from the beginning. She appears only briefly while Louisa and Will attend the wedding of his ex-girlfriend. The tokenism of her complete comfort with and acceptance of Will is so stark that I would classify her as a magical crip whisperer. It makes her seem extraordinary when in reality the otherwise totality of others’ discomfort with him should feel contrived.

Sure social discomfort with disability is widespread but it’s a bit unbelievable that in 2 1/2 years, you only interact with one person who isn’t at least initially uncomfortable. Of course the magical crip whisperer is a former politician who worked with disabled people, because who else is there to not be horrified when faced with a guy in a wheelchair?

Beyond Will, there are no other real disabled voices in the novel. Louisa’s grandfather is primarily presented as loved but ultimately a burden. The only other time the reader hears from other disabled people is when Louisa seeks advice on a message board online. While most of those messages are described as being positive and defending the idea of living a valuable life with disability, they are not featured but merely mentioned. Instead Moyes chooses to feature a post from someone who agrees with Will. Ultimately the voices of alternative opinions are acknowledged but given little to no direct attention even though, it is suggested that there are more defenders of living with disability that people who want to die.

Instead Louisa uses the message board to get suggestions about how to cheer Will up and find accessible outing ideas. This is admirable but a lost opportunity to show that there are other disabled voices.

In the midst of Will’s quest for death, the reader is also presented with trauma from Louisa’s past. The book portrays her as underachieving and Will is constantly trying to get her to aspire to more. The book initially sets up that Louisa lives in the shadow of her sister who was was labeled the smart one from childhood and thus the one expected to succeed.

This however, wasn’t enough reason for Louisa to not feel good enough. Instead Moyes decided that she needed a traumatic past to further reinforce it. So it is eventually revealed that several years ago Louisa was raped–minor break for feminist rant… Seriously, why do women have to be assaulted for character development? Particularly when the book has already provided a violence free sibling rivalry and childhood socialization–It is after this assault that Louisa stops aspiring to take risks and do things like travel.

This traumatic past also allows for Louisa to “overcome” the effects of her rape with Will’s help including a scene blatantly ripping off Good Will Hunting where Will repeatedly tells Louisa that it isn’t her fault.

It’s bad enough that rape was used as character development but it is made worse when it is clearly something Louisa is meant to get past with Will’s assistance but Will isn’t supposed to learn to live with being paralyzed. It clearly sets up the idea that people can and should be expected to come to terms with certain kinds of trauma but not others.

It also throws a wrench in the idea that the book puts a lot of importance on autonomous choice. The book only really cares about personal choice for Will but has no problem with Will, pushing, prodding and bullying Louisa out of her shell and making value judgements about how she lives her life from her choices in employment to her boyfriend. Even though Louisa by all accounts loved her job working in a cafe (the job she had prior to working with Will) it isn’t good enough and is presented as evidence that she isn’t living life to the fullest. Ultimately giving the impression that there can be no full life after disability.

This is repeatedly reinforced by both the stark difference between the physicality of Will and Louisa’s boyfriend Patrick and how Will was before his accident. If people are going to continue to produce stories about people becoming disabled (whether they seek death or learn to live life happily with their disability). just once I’d like that person to be average. They never are though and Will Traynor is no different. He was active, played sports and was very athletic. This for some reason makes his paralysis more tragic as if he lost more and this is why he is unable to come to terms with being quadriplegic.

Then there is Patrick who is in peak physical shape. He’s a personal trainer who’s obsessed with running. It’s as if he exists solely to be Will’s oposite. He certainly has basically no other personality, other than to say offensive things about disabled people and have awkward passionless sex with Louisa and generally be an ass hole.

Which brings us to the representation of disability and sexuality. I was hoping considering the cringeworthy sex Louisa was having with Patrick, that once she and Will fell in love there would at least be a good sex scene between the two of them (this is supposed to be a romance novel after all, I have expectations). This did not happen. Even though the sex between Luisa and Patrick is clearly meant to be seen as unfulfilling and there is one instance where the fact that disabled people have sex is acknowledged (though it’s by Louisa defending Will’s manhood).

As blogger Pretentious Best Friend puts it in their review of the film. to be released in June.

What I find more distressing, though, is how the film blatantly uses Will’s disability as a shorthand for chastity fetishism.  Twilight and Fifty Shades of Grey have popularized chastity fetishism by substituting sexual attraction with attraction to danger, which leads to problematic romanticism of physical and emotional abuse.  Me Before You takes the opposite tactic, by making Will so nonthreatening that he can’t even be conceived of as a sexual being.  His relationship with Louisa has no chance of sexual culmination (at least according to the logic of the film), so Louisa is free of the usual pressures placed upon women in relationships and therefore can pursue Will without being concerned that she will be expected to consummate their love.  This is exemplified by the fact that the film’s most romantic scenes (and a few comic ones) are of Louisa acting as a caretaker, and that Louisa doesn’t even bother to break up with her current monogamous boyfriend as she spends more and more time with Will.  Again, I understand the appeal of a platonic, nonsexualized romance, but it cannot come at the expense of the dignity to either party of the relationship, and Will’s portrayal deprives dignity to an entire class of disabled persons.

The book suggests the possibility of sex between Louisa and Will and even briefly addresses the ethical concerns of a relationship between a disabled person and their carer but nothing comes of it beyond a couple of kisses. When Louisa suggests moving their relationship in that direction Will vetoes the idea because,

I don’t want you to be tied to me, to my hospital appointments, to the restrictions on my life. I don’t want you to miss out on all the things someone else could give you. And, selfishly, I don’t want you to look at me one day and feel even the tiniest bit of regret or pity that—…You have no idea how this would play out. You have no idea how you’re going to feel even six months from now. And I don’t want to look at you every day, to see you naked, to watch you wandering around the annex in your crazy dresses and not… not be able to do what I want with you. Oh, Clark, if you had any idea what I want to do to you right now. And I… I can’t live with that knowledge. I can’t. It’s not who I am. I can’t be the kind of man who just… accepts.” (pp. 325-326)

He completely rejects that her feelings for him could be genuine and forgoes the possibility of a sexual encounter that he desires because it wouldn’t be how it was before his accident, assuming that this could never be as good. It is again an example where only his opinion matters. While he can and should be allowed to decide whether or not he embarks on a sexual relationship, the fact that he uses the hypothetical of Louisa losing interest in the future rankles. He spends so much of the book demanding that his wishes be respected but refuses to even legitimize Louisa’s feelings.

His refusal is portrayed as self sacrifice for her benefit.

Ultimately his death at the end of the book is to her benefit as well. He leaves her money so that she can pursue the dreams, he told her to have. His death is also the catalyst for his parents divorce, so his father can go off with his mistress.

In perhaps an attempt to show that there were consequences to his decision for those around him and that his choice was not simply ridding him of the burden of his care, his parents’ divorce is rather minor. His family and Louisa are investigated for helping facilitate his death in Switzerland at Dignitas. While they are all ultimately found to be innocent, Will’s mother resigns from her position as a magistrate as a result of the scandal. Also in order to solidify the idea that the reader really is meant to dislike Patrick, Louisa’s now ex-boyfriend, he sells her story to the press and subjects her to a great deal of media scrutiny.

Ultimately, Will’s disability and death are used as stories of disability so often are in fiction as a catalyst for another character. His choice comes off as shallow even though it is heavily legitimized throughout the novel, because ultimately Will and everything about him really only serve to propel Louisa forward, to get her to realize that her life is in a rut, that she deserves more, she should strive for more, her life has more potential. A potential it wouldn’t have if Will chose to live because she would be tied to him instead of pursuing more education or traveling to Paris, which her inheritance allows her to do.

This kind of media is harmful in ways that giving genuine legitimacy to the voices of disabled people isn’t because if you listen to actual disabled people rather than using them as hypotheticals to defend stories like this, you get nuance even if they want to die, you hear about why. You might also hear from people who love their lives. However, while the existence  of people “who really do feel like Will Traynor” are held up a red herrings, far to much of the media representation of those feelings is fictional but people seem to accept is as real.

As Dominick Evans says in his take on the book and film,

The disability community is sick of seeing films where disabled people are misrepresented. Part of this is because we are not included, anywhere. We were not consulted for the script. A wheelchair user did not write the script. Even the main actor is an able-bodied actor, which prevents him from knowing how accurate his acting, how harmful his portrayal, and how inauthentic the script really are. Without including the disabled voice, non-disabled Hollywood continues to make life harder for us, because this is all people see, and they assume it’s true.

There is also a problem with how gleefully nondisabled people seem to adopt the idea that it is better to be dead than disabled citing “the people who really feel that way” but rarely is ever actually engaging with those people and certainly never engaging with those who don’t agree because let’s be honest, they only bring up the former to silence the latter.

New Zealand YouTube series The Daily covered some of the issues of the proliferation of the idea that it is better to be dead than disabled here,

There is so much more wrong with stories like Me Before You than the fact that the disabled person wants to die and so critiquing this kind of media is far from a tactic to silence disabled people who may want to die.

I however can’t help but feel that the tendency to jump on the “but some people do feel that way” when it doesn’t come either from someone who does or at least with more nuance relating to the critique it’s aimed at is just an expression of how people want to view disability, rather than a way to respect the fact that different disabled people perceive their lives in many ways.

** Me Before You quote taken from the Kindle Edition which I’m choosing not to link to

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Thoughts on Assisted Suicide as Canada Moves Toward Concrete Legislation

As a disabled person, I have concerns about physician assisted suicide (PAS). However, I live in a country that is swiftly moving toward concrete legislation that will make it legal and accessible to applicants. As a result I think the time for debating whether PAS should be legal is a bit unproductive. I don’t say that to silence discussion. I fully expect and endorse that the discussion around the morals and ethics of PAS will and should continue.

However, from an activist perspective, it is time to accept that this legislation is quickly approaching and it will be far more productive to highlight out concerns and make suggestions that will hopefully make a society which allows PAS to be safer for disabled people.

In terms of guiding legislation I would like to see the following requirements for applicants for PAS.

  1. The application must be made by the person seeking assisted suicide. There should be no allowance for surrogate decision makers applying on behalf of people who can’t themselves apply.
  2. There should be no advance directives for PAS in cases of dementia. A person must be capable of agreeing or changing their mind at the time the lethal action is taken (this is going to make many people very angry but I think it’s necessary)
  3. The term suffering must not be applicable as a general descriptor to disability in any part of the legislation. Only an individual can label their own experience. There should be no legislative bias.
  4. PAS must be patient initiated. Physicians must not be allowed to list it as a possible treatment option. They should only be able to elaborate on it as an option if a patient specifically asks about it.
  5. There needs to be criminal legislation specifically targeting so-called mercy killings, so that in a world where PAS exists people do not become indifferent to the murders of disabled people by family members and care givers.
  6. There must be policies in place to identify if someone has been coerced into seeking PAS. If coercion is found, there must be services available to make that person safe (such as if the individual’s care giver is the coercive force, making alternate care arrangements)
  7. Make very clear guidelines about who can qualify for PAS. Avoid using really subjective terms like suffering unless they are accompanied by a rigid definition and not open for interpretation.

In my experience, people are woefully ignorant of what rights people had prior to Carter v. Canada (the Supreme Court ruling that legalized Physician Assisted Suicide). I can’t tell you how many people I have encountered who didn’t even know that you could refuse treatment (I’m not suggesting that this is a preferable option to PAS, just pointing out the lack of understanding), or for that matter that Advanced Directives like Do Not Resuscitate orders (DNRs) existed. So many people actually think that the Supreme Court ruling that occurred just last year opened the door for all of that. There is another shockingly large contingent of people who seem blissfully unaware that Carter v. Canada even happened.

I say blissfully unaware because they will often be found saying things like “In Canada we believe in maintaining life and we believe that until the last breath there is hope”. Seriously people, Canadians have had the right to DNRs for quite some time now and BTW Carter v. Canada is a thing that happened. I guess some people really do just use the internet to look at porn and cat videos. I can’t explain this level of cluelessness otherwise.

In many ways I feel that this ignorance of the nuance of end of life care and the options available and how long certain options have been available is scarier than the legality of PAS itself. It is ignorance that allows disability to be synonymous with suffering. It is ignorance of the current legal system that has allowed disabled people to end up with DNRs that they did not consent to. This ignorance is what allows people to say with a straight face that there is no concern of a slippery slope and that disabled people do not need to worry about being targeted by family, care givers and medical personnel for PAS.

The only way to truly tackle the risks that legal PAS poses to disabled people is to acknowledge that those risks exist.

We live in a world where disabled people are devalued by society. Some medical professionals have advocated that disabled infants be actively euthanized. Academics (like Peter Singer) have echoed that argument and have gone further to advocate for healthcare rationing as a cost saving measure. They argue that life outcomes (which they and not the patient determines) should be considered when deciding who gets life saving treatment.

It is really not that hard to imagine a family member nudging a patient towards PAS whether it be to avoid caring for the patient or out of a desire to benefit from an inheritance. It is equally easy to imagine a stressed and overworked medical staff of dropping hints to a patient whose care is both expensive and time consuming. Considering that society has already done a great job of framing disabled people as burden, that people would not be susceptible to such hints.

The biggest danger of the slippery slope is having those in power assume that their good intentions are enough to negate the risk of it happening. Acknowledging the risks and taking steps to stop them is the best hope of actually avoiding them. Good intentions are not enough.