For months, Me Before You was little more than a blogosphere rumbling that I decided to ignore. The story sounded clichéd and cringe-worthy, and the air of tragedy surrounding its romantic lead another example of people with disabilities being reduced to one dimensional victim figures. For anyone who doesn’t know, Me Before You is a about a recently quadriplegic man who falls in love with his carer. Even though they love each other and are happy together, at the end of the book he makes the decision to kill himself, because he sees that as a better option than living with his disability. As you can imagine, the story is deeply offensive to many disabled people and their families.
People complained when the book first came out. No one really listened.
Then the movie was released, and the dissenting voices got a lot harder to ignore. Disabled activists protested the premiere and co-opted the film’s #LiveBoldly to promote the rights of disabled people to actually live boldly instead of submit to the movie’s message, which equates the disabled body with the need for death. The #DISABILITYTOOWHITE went viral on Twitter, and a much needed conversation about representation took place. On the rare occasions disability is represented in TV and film, the actors are disproportionately white people.
And the other thing about those actors? They are almost always non-disabled.
That it is a story written by a non-disabled writer about a character subsequently portrayed by a non-disabled man is only the beginning of the problems with Me Before You.
During a conversation on the disability and representation episode of the Black Girls Talking podcast (listen here), Vilissa Thompson, disability activist, founder of Ramp Your Voice and originator of #DISABILITYTOOWHITE (@VilissaThompson on Twitter. Follow her. She’s awesome.) talks about the problematic images Me Before You promotes. She explains that:
‘A lot of people have never met a disabled person… that image of disability in a story like Me Before You can create this prototype of what disabled “is”. Just like in black media, if you see a negative portrayal in a movie for whites who may have never met a black person in their town or experienced blackness through friendships, that’s the only representation that they have. So it’s very important for groups like us, those who are minority groups – disabled or of colour, or both – it’s very important to have positive, affirmative and accurate portrayals, because for some people what they see on TV or the big screen is all they know, and if they see that disabled people live a pitiful life and want to die that’s how [they] are going to think about the disabled experience and react to disabled people when [they] meet them.’
The message of Me Before You is powerful and destructive. It is the latest chapter in the story of disability as tragedy (previous chapters include Million Dollar Baby, another tale of choosing death over disability), an ableist narrative in which the disabled can only live on the fringes of society, trapped by ‘inabilities’ to communicate (as if speaking with your mouth is the only form of communication), or to walk (wheelchair users aren’t ‘bound’ by their wheelchair. It’s how they get around) or whatever the perceived tragedy is. Stories like this aren’t helping anyone. In an article for The Independent (read it here), disabled campaigner and Trailblazers Regional Ambassador for Northern Ireland (part of Muscular Dystrophy UK), Michaela Hollywood, makes the point that:
‘Advertising disability as a fate worse than death is offensive and damaging. It’s damaging for the young people with disabilities who are watching this film. It’s damaging to the public perception of disability. It’s damaging to us – to how we live and our aspirations for the future.’
It speaks to an ableist culture that, as Mik Scarlet writes in his movie review for Disability Now (read it here), ‘If you’re suicidal and non-disabled you’re ill, but if you’re suicidal and disabled you’re making an informed choice.’
Listening to the voices in the disabled community is vital. As allies, we need to demand better. For all of us. We want stories that reflect the real, complex lives of disabled people. We don’t want a culture that supports the idea of disabled people as a burden on society.
Say the guy on Me Before You had chosen to live. Say that instead of the story of his death, we were offered the story of his relationship, and the unique challenges he and his partner would have faced together. Say actual wheelchair users had been consulted to ensure a portrayal that felt true to the experience. Imagine a disabled actor in his role. Wouldn’t that have been a way more interesting movie?
In her BGT conversation, Vilissa Thompson said the following: ‘When you write about an experience that’s not yours you have a big responsibility to portray it fairly and accurately.’
It doesn’t seem fair or accurate that, as Michaela Hollywood writes ‘Hollywood is again telling people like me that it’s better to choose death than live as a disabled person. It’s saying my life isn’t worth it.’
The popularity of Me Before You demonstrates how much disabled voices need to be heard. I hope people start listening.