16 June 2016

Me Before You - disability as a tragedy and the laughing able gaze.

This post discusses suicide. If you need to talk to someone, please call Lifeline on 13 11 14, or QLife 3pm-12am on 1800 184 527, or the equivalent support service in your country. It also contains spoilers about the book and the film Me Before You.


Me Before You is released in Australian cinemas today. I saw the film last night (at a special 'girls' night out'), and have read the book. (Yawn!) However, I had formed an opinion about the film before I had seen it, based on others’ valid commentary, and my own experiences and insight into disability themed and led media.

Me Before You, based on JoJo Moyes’ 2012 novel, is the story of the relationship between Louisa Clark (played by Emilia Clarke) and Will Traynor (Sam Claflin). Louisa takes a job caring for Will – who became a quadriplegic due to a pedestrian accident. Will was a high flying money maker, and gave that up since the accident. He wants to end his life in six months, and Louisa tries to show him that life is worth living.

Louisa is perky and quirky, saying mildly humourous things that I found ironic when juxtapositioned next to disability. "There isn't much that can't be solved by a cup of tea", she told Will early on. Well, how about attitudes towards disability? Employment rates? Accessibility? Internalised ableism?

The film has been marketed as a romantic tear jerker. As my friend, Kaitylyn Plyley, podcaster extraordinaire said, "Girls night out. Watch a disabled man die. I don’t know what these cinema marketers think girls do on nights out." My film-buddy Kath (who giggle snorted throughout the screening) called it a "woe-mance". Also, in one scene, Joanna Lumley's character said "one can't do these things sober", and I wished I had a drink to help me through.

The main message the film conveys that death is a better option than living with a disability. Will ends his life because he has a disability. That's the only reason. He cannot live differently to the way he lived prior to his accident. He has the wealth and support to live a comfortable life - which many people with disabilities don't have.

The film highlighted the expectation of a non-disabled person to be a hero, to save the disabled. Louisa took care of Will and she learnt a lesson. She told him that. She needs him to be a better person. Disabled people are not your teaching moments.

There is also the issue of a non-disabled actor cripping up, the portrayal of disability as a tragedy, and the way our response has been shushed by non-disabled people.

There's not much to say about Me Before You that hasn't been said by my fellow disability activists already. For one of the first times that I've known, the collective voice of the disabled community has been hear loudly. As Buzzfeed headlined, The "Me Before You" Backlash Was Bigger Than Anyone Expected.

Seventeen year old Stella Barton wrote an excellent piece this week on why she won’t see the film.

Dominick Evans has written about the problem of Hollywood telling us it’s better to be dead than disabled, and led an excellent campaign on Twitter.

Twelve year old Ella Frech wrote an open letter exploring themes beyond her years, asking "Dear Hollywood, Why do you want me dead? Please don’t deny it. The movies you make tell me the truth about what you really think about me.".

Jax Jacki Brown explained her concerns for young, vulnerable people with disability getting the message that death is better than being disabled, and also about the protest we are holding tonight.

There are also the brilliant Huffington Post and Karolyn Gehrig articles, from which I’ve quoted towards the end of this piece.

And the Center for Disability Rights in New York created a video showing just how many films feature the same narrative that death is better than disability, and assuring disabled people their lives are worth living. The disability-led commentary has been amazing.

Despite our loud voices, there's still shushing from the non-disabled, telling us what the film is about, and how we should feel about the film.

The film's director, Thea Sharrock, believes the activists anger is a "misunderstanding".

Writer, JoJo Moyes (who also wrote the screenplay) said you can’t judge a character "unless you put yourself in somebody’s shoes". Many disabled people are in Will Traynor's shoes, JoJo.

Actor, Sam Claflin didn’t even want to engage with the disability activists during his chat on Twitter, ending the chat early.

And the online commenters - ablesplainers - are telling us to get over it. It’s just a film!

When I first wrote about the film on my Facebook, and shared links to others’ writing, I was told that I had to watch the film to make a proper judgment. My lived disability and media experience didn't count. I was told that it wasn’t REALLY about death being a better fate than a disabled life, and disability hasn’t been portrayed as a tragedy – Will was just an arsehole. So much ablesplaining.

Oh, but it's just a book and a film. Relax, it's fiction. So, what’s the problem?

Popular culture has a huge impact on the way disability is perceived. And in this case, the book and film has portrayed disability as a tragedy. Many readers and viewers will get their perspective of disability from this book and film, yet won't even interact with an actually disabled person. They won’t see that a person with a disability can have a joyous, pride-filled life.

Readers and movie goers are crying over Will Traynor's death, yet are they crying over the barriers and discrimination actually disabled people face in our everyday lives? Do they know about the low employment rate and poverty experienced by so many, and what are they doing to change that? How are they changing their low expectations of people with disabilities if they regard Louisa as a hero for caring for Will? (I am amused that art imitates life, and Louisa has zero qualifications to care for Will.)

(Just on low expectations, I've been thoroughly researching what people have said about the film. I listened to a podcast that reviewed it, and one of the hosts thought the portrayal of Will was unrealistic because of his disability. He was too attractive for a man with a disability, she implied. She went there.)

I'm concerned the only exposure to disability people will have is through a schmaltzy, fictional depiction of us. They see 'us' through the movies, and they cry. And they laugh at our disabled quirks. They see us in real life and they pity us, or other us, and never get to know that our lives are worth living. Are they even getting to know people with disabilities away from popular culture? The able gaze is narrow. People are fascinated by how we move, eat, think, have sex, and can be loved, and they look away quickly. It's easier for readers and viewers to get to know disabled people from the comfort of seeing us through fictional characters, feeling like they’ve learnt something about disability just by consuming Me Before You.

While watching the film, I paid attention to the audience's reactions. The audience laughed at the severity of Will's disability symptoms - like spasms and voice, and any scenes that hinted at love and sex. Was that funny for them? Awkward? A bit gross? Can a disabled person even have sex or be found attractive?! (That question was evidently on people's minds from the laughter I heard.)

The saddest thing for me during the film was hearing the audience laugh at how inaccessible the race track was for Will's wheelchair. It sunk into the muddy grass and he looked frustrated. Help was called. This inaccessibility is every day for disabled people. And the audience laughed.

The laughing able gaze was sickening while watching the film last night. There was more laughter than crying - perhaps the audience didn't see disability as a tragedy, just an awkward thing to laugh at? As I live-tweeted the film, my Twitter followers told me they were disturbed at the audience's laughter, too.

Karolyn Gehrig wrote about the able gaze in her brilliant piece – perhaps my favourite among the Me Before You commentary:

"We see you. You do not see us.

Nothing I do transcends disability. It is deeply entrenched in every thought, action, and interaction. To deny its inextricable nature is to dismiss, shirk access, make the world more unforgiving for me, and those in my community. Especially those who do not yet identify as members of the disability community, out of fear or self loathing. Those who might "want to see Paris, but as me." You do your companions no favors by rendering disability so flat."

I do wonder if all those people who support the tragic narrative of disability and cripping up by non disabled actors would go see theatre, films, music and art made by actually disabled people? Would they see our take on disability, or prefer Hollywood and airport bookstore schmaltz?

Another issue is Sam Claflin cripping up (a non-disabled actor playing a disabled person). Ablesplainers say "BUT IT'S ACTING. THEYRE PLAYING A CHARACTER. THEY ARE PRETENDING TO BE DISABLED."

The role could have gone to an actually disabled actor. Most likely he will win some sort of award for being a hero and playing a disabled character. As Scott Jordan Harris wrote:

"Able-bodied actors should not play disabled characters. That they so often do should be a scandal. But it is not a scandal because we do not grant people with disabilities the same right to self-representation onscreen that we demand for members of other groups who struggle for social equality" .

There are so many disabled artists who could play have played the role of Will Traynor. Blacking up is not acceptable in film and wider society, so why is cripping up?

I also want to acknowledge that not everyone feels the same way about the film as myself and other disabled activists, especially around the theme of assisted suicide. As Holly Warland wrote in her very articulate piece on Daily Life:

"I see the character's decision to end his life on his own terms empowering. I'm in a very unpopular section of disabled society who believes in the right to assisted suicide for those competent enough to make the decision for themselves. For full disclosure, I will reveal that as a 24-year-old woman with Muscular Dystrophy (this involves the deterioration of my muscles from the chin down over time and means that I rely on 24-hour care), I plan on taking my own life once my disability causes me more grief and anguish than I feel is worth living for."

It’s a very complex issue, and I respect all views. If it comes to the time when my skin is too painful to bear and my quality of life is reduced considerably, I hope I have the choice of voluntary euthanasia. However, like Jax, I do worry that the message of this film might prey on vulnerable people with disabilities, it might make them think they are better off dead.

I don't have an acquired disability, and I don't have the type of disability Will Traynor has. The physical barriers he and so many of my friends encounter are not my experience. But I do have a disability, and experience the same attitudinal barriers he and my friends experience. I've also experienced that internal ableism he feels - for a long time disabled was the last thing I wanted to identify as. There was a time when I was young that I wanted to die, life was so isolating. And I've had people tell me if they'd were me, they'd kill themselves. This has happened a few times.

I was on a date once. He was nice - academic, good at making conversation and funny. I was gazing at the way his hair flopped over his forehead when he told me if he looked like me, and had my skin condition, he'd top himself. He couldn't handle me publicly telling my story, he wasn't comfortable with me being proud. And he thought my life was so hard it was easier not to exist. This hit home how others see us, how Hollywood sees us. Lives not worth living. And I don’t want that to be the message that keeps on being perpetuated.

(Some friends did a fake fundraiser outside a Perth cinema last night, asking people to donate to send them to a Swiss suicide clinic, like Will did in the film. People donated, without question. This is very disturbing. People thought my friends were better off dead.)

Many people within the disability community are angry about the book and film. But we’re also angry about how we’re being told to feel about the film. It’s the same old case of being grateful disability is even covered, of having our feelings and life experience invalidated. Mik Scarlet so eloquently wrote for the Huffington Post:

" Throughout the comments sections of blogs and articles explaining disabled people’s views are non-disabled people telling us we’re wrong. Not just about the film but pretty much whatever we’ve said. Our real life experience is nothing compared to stereotypes and beliefs of those who can only imagine how they might cope with impairment. Hence a debate around a work of fiction has become something bigger. To me it has now opened the lid on the truth behind how society sees disabled people. The key message from the recent protest around Me Before You is disabled people should just be happy that good intentioned people are trying to do something for us, with no experience of what it means to be us, and without really talking to us. We are not allowed to be experts in what our lives are like, or what we want? The mantra of all campaigners for disabled people’s equality is "nothing about us, without us" yet this whole furore has proved how far we have to go to achieve this goal."

One of the most poignant passages of the book for me was the part following a day out of the races - tiring from inaccessibility and staring. It particularly resonated with me because of so much of the shushing that's gone on towards the disability community. It is such a true example of people speaking for us, over us. Perhaps JoJo Moyes had a premonition that we, too, didn't want someone else telling us how our lives should be run.

" ‘Is … something the matter?’ I said, when he failed to respond to my third comment about the local news.

‘You tell me, Clark.’


‘Well, you know everything else there is to know about me. You tell me.’

I stared at him. ‘I’m sorry,’ I said, finally. ‘I know today didn’t turn out quite like I planned. But it was just meant to be a nice outing. I actually thought you’d enjoy it.

I didn’t add that he was being determinedly grumpy, that he had no idea what I had gone through just to get him to try to enjoy himself, that he hadn’t even tried to have a good time. I didn’t tell him that if he’d let me buy the stupid badges we might have had a nice lunch and all the other stuff might have been forgotten

‘That’s my point.’


‘Oh, you’re no different from the rest of them.’

‘What does that mean?'

‘If you’d bothered to ask me, Clark. If you’d bothered to consult me just once about this so-called fun outing of ours, I could have told you. I hate horses, and horse racing. Always have. But you didn’t bother to ask me. You decided what you thought you’d like me to do, and you went ahead and did it. You did what everyone else did. You decided for me.’

I swallowed.

‘I didn’t mean to –’

‘But you did.'

He turned his chair away from me and, after a couple more minutes of silence, I realized I had been dismissed."

So relevant, hey? (The movie left the race scene in, but skipped Will's assertion that he preferred not to have someone else decide what he wanted - I thought this omission weakened the film, implying others did decide what Will wants without asking. Of course, he was adamant that someone else didn't decide he should live on, live boldly.)

Will chose to die when he seemed most content. Loved by Louisa, surrounded by family. That's his choice, although it contradicted the so 2016 hashtag for the film - #LiveBoldly. But it was his informed, consenting choice, a complex one that was far too deep for a PG rating. The film ends with dead Will 'reading' Louisa a letter as she's in Paris (living the life he yearned for). "Live well" he told her. Yet Will didn't take his own advice.

There do need to be more films made about disability. But we need to be consulted in the creative process too. For us, this fictitious story is more than just a film we should get over. It’s a reflection of the low value and expectations society has for us.

There are people with disabilities who are not happy with their lives, and this is a valid, complex reality - I don't want to dismiss their feelings and decisions. But tragedy is not the only story about us. Disability should be an incidental part of a character’s life. Film makers need to show that for many people, disability is a proud part of our identity. We belong to a strong community. And our lives are worth living. Pride is a story.

Live well. Even with a disability. Because you can.

We are protesting Me Before You in Melbourne tonight. Come along to the Jam Factory from 6.00 pm if you're interested. Details on Facebook.

Did you like this post? Did it help you? Please consider buying me a drink!

Edit: here is some media I did around our protest.

I wrote a piece for SBS Life.

I was interviewed on ABC World Today and a different version on ABC news.

Quoted in the Sydney Morning Herald.


  1. I was nodding in agreement so much with your article that I almost got whiplash!! :-P Thank you for this. Can I ask a question? I haven't seen the movie (and refuse to due to what I've heard), but one criticism seems to be that they used an able bodied actor to portray Will. My understanding of this is that they had to because the book and movie show his life before he was disabled. Do you think there would have been another way for the movie to do this (with a disabled actor) that would have still given a smooth continuity? (I'm not looking for an argument, I really am wondering how else they could have done it. For the record, I agree that disabled actors are way under utilized in Hollywood.)

  2. I think they could have used a disabled actor. It's just lazy casting, and another ableist excuse. With film technology, I'm sure they could have computerized his ablebodiedness, or left that scene out completely. There was a lot of wishing to who he was prior to accident. And thank you!

    1. Agree with almost everything you wrote, except about what you consider to be lazy casting. Blacking up is completely different. Actors ACT. Can I not portray a lesbian? A Buddist? Not wear makeup to alter my age appearance? Yes, casting could have used a disabled actor or not.

    2. I haven't seen the film yet but as I understand it there were many added scenes showing Will pre-injury, these were not in the book it seems like the addition seems like justification for the cripping up. Because the short scene in the book that was pre-injury could have been done with exposition or even CGI. Seeing as they are now relying so heavily on CGI to make nondisabled people look disabled. I think they could have given a wheelchair user a body double long enough to be hit with a motor cycle

    3. Crippled Scholar - I totally agree. I wrote in my other piece on this topic that there were very few scenes showing him as non disabled, and yes, CGI could have been the way to go. Thanks!

    4. Crippled Scholar, you're right. In the movie The Martian, they use a very thin body double for Matt Damon to show his weight loss during his stay on mars. It would've been doable.

  3. You know what was really hard? Getting on to my scooter in front of all the weepers who lingered to gather their hankies. I felt pity x 100 or maybe it was repulsion, as I clambered on, scootered around and left. Disgusting. That was the worst part of the whole experience. And the film was bad. Great blog. Kick this one to the kerb and leave it there. I don't think this will be up for any awards - maybe a BAFTA nom for Emilia Clarke? Sam character was limp as; parents were ageing Ken and Barbie. I did like the ozzie tho.

    1. Oh Kath! Im sorry. I should have stayed with you. And that reaction was exactly what I got at in my piece - they can't handle disability in real life. It's more comfortable to be at a behind the screen distance. See you tonight. Rattle that tin ❤️

  4. Excellent writing and you always have me thinking.
    I haven't read the book but the horse outing is insightful and should have been in the movie at the least.
    I shouldn't decide for my child what they like or do
    Im beginning to notice questions that my child could easily answer are being directed at me like I am some type of interpreter.
    I want him to be good at everything and proud of all of himself without the"considering"
    Thank you for your blog
    Hopefully it works im not a blog commentor :)

  5. I actually think that this movie is terrific, and I am quadrapeligic. I laughed at the race track part, because I know the feeling.

    Disabilities are a difficult thing. Because yes there is a time to be sad. And a time to joke about it.

    Just because the book is fictional, doesn't mean it isn't relatable.

  6. Truly excellent and comprehensive review. To your comment about being pitied, I have said exactly the same thing. They want to pity but only if we stay reasonably quiet and know our place. Sadly, you learned this truth in a most unfortunate way.

  7. So sorry I'm not able to be at the protest tonight! I'm out of Melbourne unfortunately. Definitely there in spirit!

  8. Thanks for sharing Carly. I was considering seeing it for no reason other than because Emilia Clarke from GoT is in it and being one that my wife may enjoy being a girls night out type movie. Now reading the depth behind it I don't think I will. I don't know that most people give it the level of consideration that you've detailed and the way you've articulated your points certainly resonates with me. Thank you.

  9. Sometimes people laugh because they feel uncomfortable. Could that have been the case here? I haven't seen the film but think you make a really important point in general about the portrayal of disability in pop culture.

  10. I can't even begin to describe just how depressing not just the book is, but the popular reaction to the movie. People laughed? just makes it even more depressing.

  11. Im actually in total disagreement with this article. I am a disability carer i know i have a heart of gold i know i work my ass off for everyone i help. Most of all i know im a good person,this isnt something iv ever said about myself but i do know. I loved the film and I actually felt it showed a different light on disability. When woring in disability we try and much as we can to promote client choice, empowering them to be independent and make choices for themselves.. I feel the movie showed that he had the choice and he chose to die. Yes i feel life is what you make it and he could of made it be better but he didnt... who are we to judge anyone for a choice they've made? Do people choose to become disabled? No.. do all disabled people have a voice to tell you how they feel? No... I can tell you if a few of my clients had their choice they to would want to die. I don't feel the movie is saying that all disabled people want to die or should die i feel its showing how hard it was for Will and that he was able to make that decision.

    One part of this review i didnt loke was saying that people who were crying had no right to be crying because we pity people with disabilities or that we dont know them..... well yes actually i do know alot of people with disabilities i spend every day surrounding myself with all sorts of people with disabilities.. do i pity them? No... most of my clients are joyful happy, love life and they definitely all have a better social life then i do!! Did i cry? Yes!! I was balling my eyes out it really hit home. It really made me think what would my clients choose? I also lost a client last year after he had a stroke, he would of lived but if he woke up he would of been a vegetable for the rest of his life so his parents took him off life support. This was one of the toughest times in my life as we were very close.

    The other thing is funny things happen everyday whether you have a disability or not and do we laugh at our selves yes? Do people with disabilities laugh? Yes... just because they have a disability does mean they don't have a sense of humor. So i believe its ok to laugh throughout the movie, your not laughing because will was disabled! Your laughing because it was funny.

    In my view no ine has the right to judge anyone unless you've walked a mile in their shoes.

    1. CAN YOU FOOLS STOP USING THE STANDING WALKING AND RUNNING SHOES LINE AS AN ATTEMPT AT MEANING??!!! I mean seriously from the writer (JoJo Moyes) on downwards are you people so egregiously undereducated that you can't see the ridiculousness of this statement in this context?

      I don't believe you're a carer or a real person, Paige. Your profile doesn't exist. I declare you a troll who's just eaten up with Carly"s success vs your own inadequacy. You know it's not ethical to talk about employers/clients?

      I've noticed successful popular eloquent women get dissed by bores and losers a lot because really you have nothing to say and what you do say, nobody's interested in. So either go write your own piece and find the guts to face numberless fools like yourself who are too gutless to uee their real identuty or show some respect for somebody who's a far better writer than you'll ever be. Yknow, watch and learn.

    2. I disagree with you therefore you don't exist. Mmm. Isn't that exactly the opposite of what the acceptance message is?

    3. Wow, Kath Duncan, that would have to be one of the most venemous, nasty replies i have read on a blog in years, in response to someone who was not being mean or nasty, but merely sharing a differing opinion to the author of this blog. I am absolutely blown away. I'm sure that Paige didn't mean walking in shoes nastily, if you found it offensive (as is your right) you could simply point out that a better description of something might be used.

      Carly Findlay, i hope this person doesn't represent your readership, or that you condone such horrible responses to someone who merely disagreed with you.

  12. Differences exist within every minority group, and the depiction or portrayal of one person, irrespective of how far reaching in popular culture it may be, doesn't mean it represents you, OR an entire community.

    I am in a minority group because of my sexuality. One that is often represented in mainstream media as comic relief, promiscuous, fueled by recreational drug use and club culture.

    It doesn't depict my life. Not remotely. It doesn't depict the lives of my circle of friends. But it may depict the life of someone in my minority group; it may be relatable to people, just not me.

    At the end of the day, every story has a right to be told - who am I to stifle the voice of an author? Who am I to dictate what story they tell?

    A story shouldn't NOT be told just because it doesn't live up to certain idealogies.

    A story shouldn't NOT be told just because it makes us uncomfortable.

    A story shouldn't NOT be told just because it doesn't accurately depict everyone's reality.

    A story has the right to exist and enjoyed even if it doesn't depict your reality.

    This story may not portray the psychological, physical, social norms you have experienced in your lifetime - and it may not send the message you want it to send - but what if it is someone else's journey?

    It may not be your story, but it may be someone's story.

    Why isn't that ok? Why can't that be accepted?

  13. Thanks for this write up Carly. I have refused to see the movie and have passed on the viewpoint of objectors within the disability community to the ones who were going to see the mivie. A few years ago my son was told by a doctor that he would kill himself one day. I refuse to accept attitudes that make people feel their lives are useless and from what you have written this film could be a real danger to ones considering suicide for feelings of depression /worthlessness.

    1. This is terrible WW. And by a doctor too. Such low expectations. I'm sorry. And thank you.

  14. I think you can be pro choice (I am) and still find this movie highly problematic. Are there people in Will's position in life, of course there are. There will be people in the disabled community who can relate to how he feels about being disabled and want the same ending. As Carly said that is a complex area and one we can't avoid. But I do have a problem with this story line, death preferable to disability, being the dominate disability narrative in the movies and on our TVs. If we as a group were presented as diverse as we are in the real world. If stories were told where we were simply living life, happy, even bland average lives like the vast majority of the world, if we had multiple view points out there for all to see, then a single crappy chick flick about a relatively newly disabled guy wanting to take his life would probably be seen for the crap it is and we'd move on. But that's not how we are portrayed. The fact that the author didn't even bother to talk to people with Will's particular condition as part of her basic research, tells me all I need to know. Her portrayal is the typical reaction of the able-bodied who'd rather be dead than like me or many other disabled folk. It's the people, family members even, who tell me they wont use a mobility aid because that'd be so horrible and they don't want to be like that, when they know I use a wheelchair. It's the people who tell me that they'd kill myself if they became disabled, but oh they don't mean it about me. It's the people who laughed in that theatre when accessibility issues came up, and yet are likely the same ones that'll bitch and moan about financial imposition and aesthetics when we dare mention that a ramp would allow us to access a building. It's the director who didn't want to make the audience uncomfortable by showing the realities like hoist transfers. It's the narrative that is shoved down our throats so that when people are injured or develop an illness they think that their lives are over or less. That to accept a life with disability is giving in and giving up. As Will said in the movie he didn't want to be "that guy". Like his taking his life puts him in some sort of superior crip grouping. This movie is not happening in a vacuum. It's not just a movie. Not just a quirky tear jerker. Not just a story that appeals to or reflects a subset of disabled people. It's adding another, very palatable and appealing to the masses, layer to the shit societal narrative about disability.


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