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.
5 thoughts on “The Scapegoating of Disabled Voices & Activism”
Thank you so much for this Kim. You have no idea what it means to me to hear you articulate this so well. Thats why when I talked about the book and film, I separated out the disability discussion from the assisted suicide discussion because of these exact feelings & I think they are two separate discussions. It’s hard because even though I articulate why I feel in some cases in support groups or with people I interact with that assisted suicide is warranted in some cases as an option for people, I still get a lot of backlash for it for being ableist in even acknowledging it. I would never choose it for myself but I have explored it as a option once because I needed to learn more about it for myself. I had a situation affecting my quality of life that I wanted to learn more so I could make a choice about it as part of end of life planning if it became necessary. It wasn’t because I was depressed or suicidal. I even explored it when I was making up my living will & other end of life decisions in preparation for transplant because it was part of drawing my own lines in the sand as far as treatment options & interventions went. Dying on my own terms is important to me if I am ever given that opportunity. Everyone has the end of their rope as far as quality of life or terminal illness decision making. That’s world’s away from actually being suicidal. But yet, I find myself pretty harshly judged (especially those with disabilities) when I try to openly talk about it, which I do sometimes because I felt that people are too dismissive and closed off about talking about grief and death period. I thought maybe they could at least try to understand my point of view on the issue because it’s not disability behind it, it’s quality of life & not prolonging death that is. Yet it also pains me the judgement that comes off when I do understand other people’s choices including their right to a dignified death. I get a quite harsh backlash that is just as hard & maiming as any ableist views are, maybe even more. I have had friends in the position with their quality of life being so nil they wanted to consider it. I would never judge them for that. I would at least want them to be able to learn more so they could make an educated choice for themselves based on their situation, you know. I have yet to have friends who chose that path but a few I was able to discuss this with. They appreciated at least having a non judgemental ear as a sounding board to think it through.
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Reblogged this on Spectrum Perspectives.
Reblogged this on AS I LIVE & BREATHE and commented:
I’ve avoided this issue for a long time, but again want to repost Kim Sauder’s work because it opens an important discussion. I know the devastation of suicide first hand. I do not condone that. However, I think the distinction of assisted suicide or assisted death is much different. It’s an individual choice often made when or considered when quality of life is dwindling in the context of terminal illness. I believe very strongly that if given the choice, people should be able to die on their own terms. However, I’ve been labeled by some people as ableist for acknowledging that. I do see the problems where it could be used to exploit or take advantage of disabled people for personal or financial gain. A lot of this is also exacerbated by the climate of Hollywood as well. But I’ve had a lot of friends pass with hard and horrible circumstances. Their choice to withhold or stop certain treatments is not suicidal, so why should it be considered if someone chooses death on their own terms in a terminal illness context? I only bring this up not to stir the pot or tell people how to feel, but to point out such decisions are not made lightly. I held off on even talking about this for a long time because I didn’t want a debate or argument about how wrong I am to acknowledge some people may make this choice, or that I even looked into it briefly to explore how I felt about it for myself so when I was exploring both end of life decisions & transplant I could be fully informed as to whether it might be something I would explore if it came down to it. I decided against both times, but I reserve the right for others to feel differently and allow them to come to their own conclusions for themselves. As usual, Kim articulates this much better than I could even bring myself to (& I tried several times).
As a truly pro-life person, I share your distate for the hypocrites who oppose abortion but don’t care about those babies after they’re born. I think abortion is wrong, contraception is good, support for parents and children in poverty is good, the death penalty is wrong, euthanasia is wrong, reducing suicide risk is good (including for LGTB people), no-persecution support for pregnant addicts is good, and support for disabled people is good. I think all of those are essential to truly be pro-life. Those people aren’t pro-life, they’re just anti-abortion.
I love that they’re different opinions about the movie/book. I have a number of permanent disabilities that can sometimes make life a pain in the arse. Yet I found me before you in some ways empowering for people who have disabilities. I would love to hear your thoughts on my blog about it… Keep up the great work!