Regardless of good intentions, the new Hollywood romance’s handling of disability is an insult to the world’s biggest minority group, says Michaela Hollywood
There’s another romantic Hollywood flick on the block. As someone who has been reviewing the movies for almost eight years, I usually pay attention to the buzz. But I’ve yet to see anything quite like what I’ve seen around Me Before You.
Several months ago my friend and disability rights activist Dominick Evans shared his blog discussing how Me Before You presents dangerous ideologies to the general public. I read, agreed and moved on. But then someone shared the advert with me, and as I watched my blood boiled. Last week the premiere of Me Before You saw a protest by disability rights campaigners.
It’s impossible to explain why this is so wrong without sharing some spoilers, so please do forgive me.
Me Before You is the story of Will (Sam Claflin of The Hunger Games), a rich, good-looking man who is left paralysed after a road accident. His family place him on suicide watch and hire Lou (Emilia Clarke of Game of Thrones) as a carer. Will promises his family six months before he opts for assisted suicide. When Lou discovers the true purpose of her employment she sets about convincing Will to live, and in the process they fall in love. At the end Will chooses to go through with assisted suicide and leaves his fortune to Lou in an effort to unburden her of his dependence on others.
On the superficial surface, this looks like a film that’s enjoyable. But Me Before You is laden with the very same ableist culture that means I spend my days combating the inequalities that disabled people face. The fact that Will genuinely believes that he is better off dead than disabled is dangerous. I’ve had friends who have been asked in the street when their appointment with a suicide clinic is, because they’ve been diagnosed with a progressive terminal illness, and I’ve also witnessed young disabled people questioning why they are alive. Telling people like me that they should be dead is dangerous.
During her quest to convince Will that his life is worth living, Lou actually ends up writing a list of things that Will cannot do. This is an understandable reaction, but that does not mean that it’s not dangerous. I can’t do anything independently but think and speak, but in reality there’s very little I can’t do without some assistance and creative thinking.
I live with spinal muscular atrophy (SMA) and I am deaf. When I was born my nine-year-old sister had just gone through the spinal surgery that saved my life. When I was little she wrote an essay for her first year of secondary school that said how much she wanted me to accept my condition. SMA took my sister just 20 days before her 15th birthday. I was just six years old. SMA has robbed me of many things. I’m fed by a tube at night, I sleep using a life support machine, and I use a wheelchair. I often refer to myself as the brain, while machines and other people make my body work. My level of dependence is so high that I have two people with me around the clock. I’ve spent around half of my life needing hospital treatment, and my childhood was spent learning what it means to be both sick and disabled.
I am a campaigns officer for the Muscular Dystrophy UK Trailblazers, a 600-strong network of young disabled people committed to fighting the social inequalities people like me face in everyday life. In my work I see so many examples of people experiencing attitudes that exclude them from everyday life that it disheartens me. I’ve heard stories of bus drivers refusing to deploy ramps for wheelchair users, taxi drivers charging well above the odds and wheelchair users experiencing hate crime.
For disabled people, ableism – the way in which non-disabled mistreat the disabled community either intentionally or unintentionally – is in their everyday life.
Disability is a social construct. I was not diagnosed with a disability, but with a condition. My disability only comes to the forefront when the man-made steps stop me from getting into a building, a person parks illegally in a blue badge parking space so I can’t get out of my van, or a bus driver won’t put a ramp out for me.
My life is vibrant and full. There are hardly enough hours in the day for me. I work with Muscular Dystrophy UK by day, and with my free time I’m working with my friends on Muscle Owl, a media organisation committed to sparking the social change we need in society.
Since I was 17 I’ve been working with the disabled community to make things better. I won the first case of disability discrimination in education in Northern Ireland. There have been many occasions when I’ve been turned away from restaurants. I almost got used to the fact that society just wasn’t going to adapt to accept me as part of the community. I’m known to many politicians for my work to improve access to specialist healthcare for people living with neuromuscular conditions.
All my doctors agree on one thing – medicine is means to an end. I am treated to allow me to live a life. My doctors were quite possibly happier than me when I earned my first class honours degree in public relations from Ulster University, and even more chuffed when I achieved my Masters degree in communication with public relations in December last year.
Now, my days are filled with small victories that add up to progress for disabled people. We are becoming more part of society now than ever before. But there is a long way to go.
Me Before You has a worrying undertone that tells me my life is not worth living, and that at the end of the day I’m better off dead. Even I experience days where tears fall and I wonder if fighting is the right thing for me to do. Depression is a part of life for disabled and non-disabled people. But why is the Hollywood industry so focused on undervaluing my life as a disabled person? The story behind Me Before You is not the majority of our stories. Why is there no medical help for Will’s depression? Surely people like me deserve that treatment so we can live and contribute to the world.
Director Thea Sharrock has been quoted saying that she didn’t show hoisting, showering and toileting in the movie because she wanted to make disability more normal. She’s right that it needs to be more normal, but it can’t be normalised if she and others in her position continue to leave my reality on the cutting room floor. By doing this, she has left out the one thing that author Jojo Moyes got right – the dependence on others that creates an environment of zero privacy.
The permission of Hollywood to let actors “crip up” as disabled people is similar to the process of letting actors “black up” that ended decades ago. Now, sometimes a non-disabled actor is needed, like Eddie Redmayne in The Theory Of Everything, but I’m still left empty at Sam Claflin being cast where it’s simply not needed, while my friends who are disabled actors can’t get roles. We’ve had small steps towards better media representation of disability – Cherylee Houston in Coronation Street and America’s Next Top Model’s Nyle DiMarco, who is deaf, spring to mind. But there’s a long way to go.
Disabled people have been painted as lazy benefit scroungers. I’m proud to be working from home in a job that’s improving lives.
I want to see disabled people being cast as disabled characters. When books are written, I want disabled people to have clear voices. But more than that, value needs to be placed on my life as a disabled woman able to contribute to our society. At the end of the day, we learn how to treat others from the media, and the latest glossy Hollywood film is teaching dangerous ideas that I’m better off dead, regardless of good intentions.
I am not a scrounger, and I am part of the world’s largest minority group. We remain the most oppressed. Maybe in five years’ time things will be different, and it’ll be because of a strong movement of disabled people that society as a whole will be better.