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
60 thoughts on “Why Are You Complaining? Some People Actually Feel That Way: A Critique of Me Before You”
this really is a great post outlining much of the issue of Hollywood’s portrayals of disability on a general level, but then adding the whole assisted dying discourse to it really muddies the waters, but this is so aptly & succinctly summarized. Thank you so much for sharing this. It’s extremely helpful.
I firmly believe disabled or not, the right to die on your own terms is a very personal choice & can see both sides of the equation for those who are opposed but those who are in favor. But I can also see how it could be used to exploit or harm others at the same time. I don’t agree with it being used as a plot device to perpetuate myth or stigma or stereotypes though either. I think you raise important food for thought regardless on the issue on all sides. But that’s another thing that aggravates me about movies like this. It’s such a skewed one sided view. When the real emotion is infinitely more complex.
Reblogged this on AS I LIVE & BREATHE and commented:
I first met Kim Sauder on Twitter. Shortly after I started following her blog on WP. She has articulated so well here my thoughts on the problem I have with Hollywood’s portrayals of disability in general. I have always had an issue with writing & film that portray a disability as something to be ashamed or intimidated by. Kim outlines this so well here that I think most people may finally be able to understand why this issue is so upsetting to be excluded, stereotyped & generalized this way. That’s why I chose to reblog this post today. I have several thoughts going on my head but many of them just serve as resounding echo to the issues that Kim has raised here so I’ll just let them stand on their own. I hope they will speak just as strongly to your heart & mind as they did to mine.
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I won’t defend the movie or the actions of Hollywood (I didn’t even know it was a book), as I had no intention of seeING it after viewing the trailer. It made me cringe because of a lot of points you mentioned. What I am curious about is the available pool of disabled actors to fulfill such roles if Hollywood were to actually do an honest casting call for a disabled character. How would it work if there was a small pool of actors with a particular disability, but didn’t suit the role acting wise? Again, not defending the actions, because I’m not privy to the ins and outs of Hollywood but, perhaps, more people with disabilities should be encouraged to pursue acting careers in order to fulfill character roles. I only know of a handful of actors with real life disabilities. This leads me to believe that perhaps there isn’t enough encouragement on that side of the spectrum. Regardless, I won’t being seeing the movie. I barely made it through the trailer. I have several friends with different types of disabilities and they are very independent individuals, each one of them unique in their talents and attitudes. I can’t imagine that any of them would actually want to see the movie either.
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It is hard to encourage people with a disability to become actors and actresses when there are virtually no jobs. All the really good jobs go to non disabled actors. This movie is one of many such films that goes out of its way to ignore actual people living with a disability.
Why is it so hard to encourage? Maybe if there were more actors with disabilities there would be more actors with disabilities in those roles. There are plenty of little people, deaf people, and people with Downs Syndrome in the industry. By not giving encouragement just because of the current obstacles is ridiculous. No one would ever accomplish anything.
Very well written. We had intended to see the movie, because I thought it was a love story like ours. We will not be seeing it. If you want an uplifting book to read, try Never Surrender – The story of Cory Wohlford and his life after becoming a quad at age 22. He is a complete quad, but has coached high school football for the last 29 years at a major high school in the Kansas City area. His is a true story… one that inspires. https://www.youtube.com/watch?v=XMry431ebtc
Reblogged this on snave51.
Brenda, with respect, you seem to be missing a fairly major point. Disabled people do not live our lives to be “uplifting” and have our life be “one that inspires.” We live, do smart things, do stupid things, have relationships, etc. for the same reasons any abled person would do. I don’t want people to be inspired by the plethora of disabilities heaped on me by fate, and how I somehow managed to put my right shoe on my right foot anyway. I want people to be inspired by my poems, readings, publications of all sorts, my teaching, and just leave it there. I do take compliments on my cane, but I am not on this earth to inspire you, and the only uplifting I want to do concerns a well-fitted bra. You may have meant something utterly different, but your phrasing comes across, in your book recommendation, as rooting for “disability porn.” I would sooner recommend the autobiography of the late John Callahan, a quad who continued to be a cartoonist after his accident, who was cynical, profane, and taboo-breaking. Not sentimental in the least. We need stories like his too.
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i am nota big fan of chick flicks and would not see a movie like this even if it wasnt an ableist tirade….. but now i have a strong desire to show up there in my powerchair with a bushel of rotten tomatoes and throw them in the movie theater. i am one of those people that actually has felt that way…my “quality of life” isnt always so great especially since i am not just disabled but also chronic pain, nausea, seizures, mitochondrial disease, it’s not easy seeing how my family has to devote so much time to caring for me. there’s definitely a lot of guilt going on. it’s complicated. but at the same time i’m not dead yet and my family still needs me, even though i need them in a different way than i used to. i wish there were more examples of disability in the media that were not the extremes of “pathetic” and “inspirational”
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PULEEZE give me a break!! It’s a romance. It’s not supposed to be some deep thoughtful piece on disability. It’s a romance. Why is everyone have a cow about this movie! You go to a movie to be entertained. From the trailer, it looks pretty entertaining. ENOUGH ALREADY!
It is not just romance. It is a film in a long line of films that send a very direct and pointed message: being dead is preferable to life with a disability. It is a snuff film.
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I agree with you. It’s obviously not just romance and the movie certainly has a deeper message, but I don’t think it’s that. If you ask me, and that’s a personal thought, the whole movie is about living the life YOU want, just because YOU want it. They’re always people who love you and would do anything for you to be happy, but if you don’t feel completed with what you’ve got, then why settle? Please notice that no one in the movie told Will to kill himself. On the contrast. Everyone tried to convince him the other way and he specifically said that the life he has could be a good life but he doesn’t want to settle. He had a great life full of excitement and the accident affected him a lot. And by no means do I imply that being disabled is a waste of time, because it’s not. The thing is that everyone has a different prospect of things. Each of us react to something in a different way. In that case, and many others, people are not willing to spend their lives in a way they don’t want to. And I find that acceptable. Plus the whole “assisted-suicide” issue is legal in some places and it’s not because nations want people with disabilities dead. In fact assisted suicide is not that simple, let’s say, to perform. I suggest you check out dignitas website if you find the time.
My point is that each one has a different angle to look at things and that’s acceptable. We never know why they actually look at things in that way.
All in all, the message that this movie passed to me is that you’re always loved, but in the end it’s your life and if you don’t want to live the way you are, don’t. Adapt your life the way you want.
There’s one glaring omission from this and that is you cannot commit physician assisted suicide simply because you are disabled. It is absurd that this story even suggest as such. I haven’t read the book or heard of the film so maybe there is something I am missing, but based on this article (and the one I read in Huffington Post) I am writing this response. I became disabled and unable to work at the age of 35. I have a progressive, degenerative neuromuscular disease. It is called Primary Lateral Sclerosis or upper motor neuron disease. It is related to ALS (Lou Gehrig’s disease), though it is not fatal. Some people who have been diagnosed with PLS, however, actually have ALS (a much slower progressing form) and ultimately develop the lower motor neuron involvement that means ALS. ALS is a fatal disease that typically kills within 2 to 5 years. In states like Oregon, where I moved last year, where physician assisted suicide is legal (and even that term is a misnomer as the physician does not actually assist you) there are numerous rules. You have to have a fatal diagnosis – a disease that will likely result in your death within 6 months. You have to have TWO doctors who agree on this diagnosis and prognosis. If you do and you decide you want to partake of “death with dignity” you then obtain a prescription for the medications that will kill you. You fill the prescription. You are the one who prepares and takes the medication. You have until the very last second to change your mind. Many who have chosen to kill themselves change their mind. The film “How to Die in Oregon” is the best film about the matter, since Oregon passed it’s law in 1997.
As I understand it, the author did little to no research on either paralysis or assisted suicide, though it’s key to point out the book takes place in England and the death in Switzerland so the laws are likely different
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I suggest you visit the website of the Disability Rights Education Defense Fund. All the points you make have been refuted repeatedly.
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I’d be curious to read your review of the sequel then. From someone who read the book for leisure, Will was a character who became disabled late in life, and I saw in him images of disabled vets. And in Louisa I saw their spouses and family members. (Real life people I know personally). I also never felt like the book encouraged suicide, but rather the reader wanted Louisa to convince him to live. Unfortunately sometimes authors write a story purely for the superficial story and not to be analyzed as anything more. I don’t agree or disagree on whether or not that is right in this case, however, I enjoyed her writing. I’ve read a lot of criticism over various books that don’t represent certain classes of people correctly and one day I wish instead of reading commentary, someone will write it the way it should be written.
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What’s the name of this sequel?
Me After You
I can see where you’re coming from in your article. It gives a good perspective on people who are disabled lives. I just ask, why do you not call them people who have a disability first instead of saying disabled people? I was taught in school that if you use the terminology ‘people who are…’ you see them as people first and their disability second. When you use the term ‘disabled person’ then their disabity is a priority over their humanity. They are not equal to people who do not have a disability, they are disabled then a person.
I explain it here https://crippledscholar.wordpress.com/2015/03/03/why-i-dont-use-people-first-language-a-brief-history-of-my-relationship-with-the-language-and-disability/ and expand on it here https://crippledscholar.wordpress.com/2015/12/10/just-because-i-use-identity-first-language-doesnt-mean-i-let-disability-define-me/
People have impairments but they are disabled by a society that is not inclusive of their needs. So ‘disabled person’ is more appropriate because they are a person who is effectively BEING disabled by the obstacles (environmental, institutional and attitudinal) they encounter every day in society.
And not all disabled people want their impairments overlooked or seen second, because it is a part of who they are (not all they are), and that implies they should be embarrassed by, or ashamed of it.
Reblogged this on Her Headache and commented:
This is a very complex issue, but I had to share this anyway.
As usual, your post is thoughtful and thorough and incisive. Lemme just say… Dude, have I ever been in that moment of, “I hate this book/film/TV show/etc., it is making me physically ill–” …and I put it away. Many times I couldn’t finish it, or if I did, I couldn’t stand to write about it. I feel a lot of gratitude to anyone who is able to accomplish that feat. It’s stuff that needs to be said and thought about. And so many others will benefit from it (like me!). How to balance that with self-care is a tricky thing… I’m in the midst of writing a thesis that deals with sexual and institutional violence, and four of the past five days that I’ve sat down to write, I’ve had panic attacks. People keep telling me that it’s important and that it needs to be critique/analyzed/written about, but there is also this gross re/traumatizing element that renders me powerless, even as I write. I mean, I’m in the midst of the process, so maybe it gets better, maybe I’ll feel über-empowered after the fact, but write now it f***ing sucks. I totally get why it took you so long to finish that book. Anyway, I’m rambling now, but yeah, I just wanted to say…thanks. Really, truly, thank you.
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Reblogged this on Life, Marginally and commented:
Important stuff. Digs deep and makes you think. Check it out.
Thank you very much for this review. To be honest I was surprised that so many people loved the book and recommended it.
I really like how you addressed the people who say “but some disabled people feel that way” or “it’s just fiction” with: “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).” This! This was great.
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I am a singer / actress / wheelchair user from birth, who is now 48yrs old. I auditioned in NY. from the early 90s through 2003. I could go into a long explination of Cripp Face, or Cripping up, as accepted Standard Opperating Procedure, but the fact that the majority of auditions for the role of a wheelchair user, were held on the second, or third, floor of an inacessable (no elevator) building!! That, says it all!! I lost count of the number of stairs climbed, or shocked faces confronted. Disabled people were never even supposed to have a seat at the table!!
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I posted a comment, but don’t see it??
First comments go into moderation so it can take awhile.
Can I suggest next time you want to write a post talking about disabilities don’t use the word cripple. It’s actually quite offensive to people who are disabled, like me.
Hi Makenna I am disabled or I assure you, I wouldn’t use it. Many disabled people (not just me) use it either to self identify or politically. In fact in academic in disability studies when something is looked at through a disability lens it is often referred to as cripping the subject. I’m sorry, you are offended but I’m not going to change it, particularly when I only ever use it in quotes or to refer to myself.
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I too embrace the word cripple for many reasons. Those that take offense need to stop and think why is this word used.
Thank you for writing this very thorough critique. The small section you quoted from the book was disturbing enough to read. I was immediately put off by the trailer when the line “Your life is stupider than mine” came up. It was so reminiscent of 50 Shades in how unpleasant and brash the male lead is it already wound me up.
I had no idea what the storyline was so hadn’t thought much about how it pertains to disability representation (actually, I first saw the character was in a wheelchair and thought it was great there was a disabled love interest… how naive I was).
What a great post! Couldn’t have said it better myself! I am feeling so sad like I am the only one appalled by this movie and book! How could everyone be giving it positive reviews? It’s grotesque. So glad to know others out there see the value of life. Everyone is unique even those with disabilities and everyone’s life is worth living.
Reblogged this on Rambling Justice.
I just saw this &!*%$! movie and I hated it. I knew absolutely nothing about it except for the one-line plot synopsis I gleaned from Fandango (which made no mention of suicide, BTW) and chose it because I was too late for “Finding Dory.” I felt sick after I saw it. Temporarily leaving aside physical ableism, I think it was highly irresponsible to release a picture like this without any warning that it could severely trigger depressed people or people with a history of suicidal thoughts into hurting themselves. I feel strongly that suicide was unhealthily glamorized and romanticized in this story, and the brutal realities of what it is actually like to die (I’ve seen those realities firsthand) were conveniently glossed over. I feel very gloomy right now and very appalled. Doesn’t anyone remember what happened after Goethe published “The Sorrows of Young Werther”?
Also, I’m surprised that reviewers haven’t made more of Louisa’s fiscal benefit from Will’s death. It’s incredibly creepy and exploitative. Moral of the story: Ladies, go find a rich disabled guy, get yourself written into his will, then make sure he dies. Jeez, Barbara Stanwyck had more scruples than that in “Baby Face.”
Last but not least, am I the only one who thought this movie was basically a ripoff of “Dying Young” in many ways?
I completely agree with what you have said. The film belittles and undermines the real struggles faced by disabled people, particularly over Traynor’s euthanasia decision being so uncomplicated and uncompromising.
I personally haven’t read the book, but would be curious to know if it paints disability and euthanasia with the same brush.
I had an ex-girlfriend who has a similar condition, but less severe. And let me tell you, she is full of life. And never crosses her mind of using euthanasia as a last result. We broke up, for other reasons not related with the disability, but i wouldn’t have mind being that Lou kind of role in her life, but such is life…
Ms Jojo Moyes did portray quite well the multitude of medical problems, physical limitations and psychological trauma that quadriplegics with cervical spinal cord injury face. I felt it a real pity that Will, being intelligent, well read, and having no end of monetary resources as well as a loving family, although eventually able to type using voice recognition software, was unable to find fulfilment in a career or hobbies and chose instead physician-assisted suicide. I do not find it unbelievable though as I do personally know people who have not been able to stop dwelling on their past life and build a new, fulfilling one given their present circumstances. A story is not a thesis – it does not have to give a totally balanced view, and as the author herself said, she chose for the character the actions they would have taken based on the personality that had been drawn out. Will’s parents, Louisa and Louisa’s parents did not want him to undergo physician-assisted suicide; in the sequel, WIll’s parents and Louisa continued to be haunted psychologically by his final act. Louisa was unwilling to use the money Will had given her upon his death.
I did not like ordinary people being belittled in this book – I could not agree that Louisa’s life was less full than Will’s previous life. I did not like it that Louisa fell in love with Will – it was unprofessional – although the author made up for it by getting Louisa to propose a change of caregiver so that they could be in a romantic relationship. “A man like that doesn’t change his mind easily”, as Louisa’s father said, is probably a good summation of the ending. This is not an inspirational book for quadriplegics to read, and definitely not a how-to guide for professional caregivers to read, but it is a moving story of a girl’s journey into an unknown circle and it opens up discussion into physician-assisted suicide, where there are proponents both for and against. I actually like the sequel, in which Louisa does not get a college degree, become roaringly successful etc etc but struggles with her grief and loss and moves on.
I’m not gonna write out a long drawn out post why i vehemently disagree with this post, other then to say people take things far too seriously. as a disabled screenwriter myself, it’s pretty obvious why a disabled actor wasn’t cast in this film-will wasn’t always disabled and you needed the flashbacks to show the contrast of his life then to now. what are you going to do, switch out the actor for an able bodied one for those scenes? what’s also neglected to mention is that will becomes disabled in an accident walking across the street. i didn’t read the book but that’s how it happens in the movie. again, if your actor is already disabled, how are you going to show this accident of him walking across the street and getting hit by a motorcycle? you can’t. Maybe I can relate to this film because I have a disability that caused me to deteriorate as i got older, but i was glad to finally see a film where a disabled person struggles with who he is now versus who he used to be. it’s a traumatic loss that people, including the writer of this article, wants to sweep under the rug. I walked for 20 years and there isn’t a day I don’t miss it. so in conclusion, there’s enough ‘inspiration porn’ out there about people becoming disabled and rising to the challenge and overcoming odds. Let us who aren’t able to get there have our moment too, because our experience is just as real and valid.
Your comments echo a LOT of what I thought of this novel. I would have burned it after reading had it not been a Kindle copy. XD
On a somewhat related note, this book HAS inspired me to try to write a disabled main character, and do my best to avoid the problems that plague this book and most of the other fiction about disabled characters. However, I am an able-bodied person myself, so I’m afraid I won’t do the character justice. What do you recommend an able-bodied author do in order to better write a disabled main character? I want to avoid the pitfalls and be respectful to the community as much as I can.
Generally, I would suggest sticking to supporting characters with disabilities if you aren’t disabled yourself but a good way to approach any character who has an identity that you don’t share is research focused on actual people with that identity and then engaging sensitivity readers (from the impacted community) to proofread your book (more than one if possible) be open to criticism (I’ve heard horror stories from sensitivity readers about authors who did not respond well to anything but glowing responses) make changes to deal with those criticisms.
This resonates so hard! When the movie came out so many people were asking me what I thought and I refused to comment until I’d read the book. I had seen the trailer and hated it but I won’t judge a book based on a movie made from it and I also know that trailers can, at times, make a movie look different than it is. So then I had to force myself to read the book. It is hateful, ableist crap for all the reasons you so eloquently laid out.
As a disabled person, as a woman, as a person who reads things I am super glad my search about “pararibulitis” led me to your blog. I’ve subscribed, followed you on Twitter and plan to buy you a coffee right after I get paid.