Me Before You: Your Disability Representation is Bad and You Should Feel Bad.

MD Hannah-Rebecca writes on the polarising film that has garnered great criticism from the disability community.

When I first saw the controversy surrounding this film, I was tentative about commenting. The assisted dying debate in the UK has been so sharp politically that I often feel ill qualified to comment. I’m aware that within disability, impairment groups can still be afforded privilege and as someone who frequently passes for able-bodied (albeit for increasingly short periods of time) I’ve never been sure it is my place to take up the mantle for this. I choose this simple stance: I am against assisted dying because I truly believe that until we respect and understand the value of disabled life we cannot even conceive trifling with removing it. Me Before You doesn’t seem to get this. The strongest criticism of this film is that it promotes the idea it is better to be dead than disabled. It doesn’t just promote this idea. It dances around in front of you, waving a placard covered in hate and shoving away the other voices that challenge this view.

I watched the trailer for the purposes of writing this. For obvious reasons, I’d been avoiding it. I try to skip messages telling me I’d be better off dead. I got nineteen seconds in before I was offended enough to stop the trailer. I didn’t even get to the worst part. The idea that you can just walk into a personal assistant position with no experience devalues the work and again undermines the importance and value of a disabled person’s life. Would you go to the dentist and let someone entirely unqualified start sticking bits of metal into your mouth? The failure to understand what good care provision is has literally led to people’s deaths but people think that these risks are okay to take because they do not understand the value of life. The one thing I can say about this trailer is that it starts as it means to go on. Guys, it doesn’t get any better. I could go on about why this film is offensive but many already have, in a very eloquent fashion.

I have pointed out the importance of skilled professionals, but by no means do I perceive them to be infallible. At a routine medicine review, I was talking with the doctors about my symptoms in order to get the right management in place. I put them in a trusted position and told them very personal things in order to get my medication. So I can continue to live a peaceful, happy life. Or whatever. After going over my symptoms, I then had the pleasure of listening to this man tell me that my life must be joyless. A decision he’d made based on me saying I need painkillers to sleep at night and a diagnosis on my medical record. The amazing thing is, he said this in a way I believe was supposed to be empathetic and comforting. My doctor sat in front of my face and told me this, all the while ignoring that my middle name is quite literally Joy. I don’t believe this incident happened out of malice, I don’t even think it was deliberate. I think what happened was that he was just very frank with me and told me what he truly believed. I can pass this story along as a funny anecdote because the consequences weren’t that serious. I was able to take my prescription and go, telling others about the ridiculous doctor and pointing out the irony of it all. That’s fine.

What isn’t fine is when it’s life and death, or in any other medical context. When a disabled person has to put their trust in the fact that a doctor will understand the value of their life and protect it. As a disabled person you are forced into an uneasy give-and-give relationship with your doctor, where the first thing you give up is your autonomy. You enter a room with a doctor? You’re not in charge any more, they are. That doesn’t mean they are qualified to take care of you. The amount of times I’ve had to watch a doctor Google the name of my condition in front of my eyes is unbelievable. We give doctors this deference that isn’t always justified. That throwaway comment told me more about this doctors beliefs around impairments than anything else he did could. His bedside manner? Excellent. His ability to listen to me? Fantastic. There were no warning signs. Until suddenly, his bigotry was showing. I have capacity to communicate my wishes and I’m stubborn enough to be fairly confident I can ensure my wishes are carried out. That said, I have been in hospital and had my wishes ignored. I was then unable to do anything about it because of the amount of morphine I was on. Lucky for them, they avoided a bollocking. The vast majority of disabled people who assisted dying affects are in a position far more vulnerable than I — a fact I always remember when considering this. What if your only hope was the doctors surrounding you, and then you realise that they don’t value your life or make false assumptions because you deviate from a biotypical norm that they’ve been taught to value instead?

This is where Me Before You is problematic. The overarching narratives are true to the offensive book, the film is produced by a largely non-disabled production team and the male lead is literally in disability drag — an able-bodied person playing a disabled character. I’ve had non disabled people try to defend the film and tell me that, “Maybe it isn’t that bad…”. Oh. Great. The best you can do in defence of this is attempt to mitigate how awful it is. Wonderful. My feelings on the film are quite clear. I’m not a fan and were it my choice that would be the end of discussion, I’d move on with my life. But then, we need to think further. There are people in this world for who the message of this film is a relevant and true honest reflection of their experience. There’s seven billion people on the planet, it’s not a far reach to think that. So, we’ve reached a point where we are telling disability stories and that’s okay. It’s progress. Not disability progress, mind you. Progress by non-disabled people. Where this progress has not advanced is in the critical analysis of the types of stories we’re telling. I say this, but by no means take it as a sweeping statement. There are academics everywhere going through disability representation with a fine toothed comb, and it was the theme for the first issue of the Considering Disability Journal. The disability community has acknowledged the need for variety in representation and the challenges of story-telling.

I find the problem with a lot of mainstream disability representation (far and few between as it exists) is that the stories do not adhere to a truly progressive agenda. Instead, the disability stories told are ‘comfortable’; stories that reinforce long-held beliefs about disabled people or serve an overarching purpose that placates an able-bodied community. Stories that let you ‘like and share’ and feel good about yourself for three seconds.There seems to be a spectrum in media disability representation and it goes from left to right, from pitying to inspiring. It’s almost as if you put a disability story outside of this, there’s a fear people won’t understand it. Disability and impairment is used as a plot device and rarely a positive one. More often than not you find yourself clinging to two sentences in the script that become your silver lining and as a disabled person, can hold on to. Suddenly the fact that a film has spent an hour telling you that you’re better off dead isn’t as bad, because some slightly positive trope appears that is such a rarity in lived experience that we can hold onto it.

I feel that collectively, we are in a place not unlike where we were when black characters began getting screen time and stories told about them. At first, we had white actors blacking up to be mocking — telling stories that fitted in with their highly offensive truths. When true representation began, roles were few and far between and controversial, sometimes poorly written. In the UK, we haven’t moved far on from that, with our best black british talent often being forced to seek their fortunes with black hollywood to avoid playing another police officer or criminal (apparently the only two roles available for black people). With disability representation, some haven’t yet gotten the idea that the disability identity is so nuanced and unique that only disabled people should be playing those roles. A disability experience isn’t something you can just put on and take off like a coat that’s gone out of season, it is more than that. Recently, the world service had a discussion about the messages that the British would send out about the cultures and people they colonised. They oversimplified and built stereotypes and viewed these countries and people as a whole with no diversity. This same oppression is being played out in poorly executed disability stories in the media. I’ve spent this blog calling it disability representation but it isn’t. It’s the systematic reinforcement of stereotypes that support the status quo and against a backdrop of austerity and cuts where disabled people have to prove their right to exist and live in this country, it’s unhelpful. It’s wrong. This is a film with a message that probably has Stephen Crabb sitting in his DWP office feeling pretty good about the decisions he’s making. We need to work on displaying the diversity in the disability experience, we need to show that disability does not exist merely to be objectified. We need to celebrate disability stories because — spoiler alert — I’m pretty chuffed to be disabled and no, I wouldn’t change it. Reducing disabled people to objects, and to then further disrespect, isolate and dehumanise them by using us as tropes in your feel good movies? It’s not okay.

Films like Me Before You do more harm than good, a point which is so glaringly obvious I’m a bit baffled that we need to say this, and say it loudly.

Want to know more? Read Ymke Kelders’ De Rouille Et D’os: Rethinking The Body And The Body Of Film and Susan Flynn’s Equality, Culture and Representation: Considerations on the Film Industry both featured in the special issue Disability and the Problems of Representation. Click below to get the entire issue for the sale price of £20.00+p&p

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Considering Disability: Considering Disability Journal is an entry-level global #disability studies publication, established and operated by expert volunteers.