I have been chomping at the bit to write an opinion post on the film and book Me Before You, but I have held off for a week as though I am part of the disability community, as a non wheelchair user I didn’t want to speak over some of the amazing voices who are making a lot of sense.  (Take a look at the work of Kelly Perks-Bevington, Michaela Hollywood and Mik Scarlet.)

Me Before You is a book by JoJo Moyes that has been turned into a film this year.  It is a story centred around the relationship between Will, a quadriplegic playboy played by Sam Claflin, and his carer Lou, played by Emilia Clarke.  Will has an accident that results in him being in a wheelchair and decides that he wants to end his life, Lou begins a relationship with him but *SPOILERS* ultimately, he goes ahead with his plan to let Lou live a life without burden.

Seriously.  A life without burden.  #LiveBoldly is the hashtag that the film promotes, which seems ironic when they are romanticising suicide, the character is doing the very opposite of living boldly.

Disability is an issue that many people feel uncomfortable with, I do some work with charity Scope, almost all the work I do is about counteracting the ideas and connotations that society have about disability. We are constantly fighting against these huge generalisations. The fact is that many people have said that they’d rather die than… be in a wheelchair/have a disability/have an ostomy.

Imagine being a person in a wheelchair/having a disability/ostomy and knowing that swathes of society look at you with pity. They think your life and existence is a burden to those around you. They would rather die than be like you.  This is what this film promotes.

People have said to me or about me, that they would rather die than having an ostomy bag.  I don’t think you can imagine just how devastating this is, the knowledge that your life is seen as unworthy, that someone cannot see past my illness to the wide and full life I live, they don’t see me as a partner, a mother, a friend, a colleague.  They simply see this one aspect of my life and deem me as suicide fodder.

I have an invisible disability, in most circumstances, unless I tell you about it, you wouldn’t know about my illness.  Living in a wheelchair is a very different kettle of fish, it is visible and therefore much easier for others to judge you based on your illness or disability.

There have been times in my life where I have felt like a burden, when I needed daily care, when I needed help to shower, when I couldn’t do anything for myself.  There have been times when I felt so low that I couldn’t cope, when I felt that perhaps my husband was better off without me in his life.  I offered to leave him, to walk away to allow him to have a “normal” life with someone else.  He told me I was being a nob head and to shut up.  He told me that we are in this life together and no matter what happens, we will live it together.  I needed to hear this.

I definitely felt a pressure to not be a burden to others, I think this is because we aren’t used to seeing people with illnesses and disabilities in a positive light.  I thought that if I wasn’t 100% able bodied, that I was a burden and not enough.  I am glad that the people surrounding me were there to tell me that was bullshit.

Suicide is a very difficult topic, it is emotive and will always create debate and discussion on all sides. The author of this book knows this, to suggest she is surprised by the uproar from the disabled community is ridiculous.

Imagine this film where being in a wheelchair is replaced by mental illness. Or having an ostomy. Or having diabetes.  Imagine if the story was then about how brave that person was to kill themselves to allow someone they love to move on… Not nice eh?

Then there’s the realisation that the industry is run by able bodied people who are misrepresenting people with disabilities.  An able bodied writer, director and actors in a film about disability, where was the disabled voice in any of this? Why not use an actor who uses a wheelchair? Or a director with disabilities?

Disability is severely underrepresented in the media, around 1 in 5 people have some form of disability but that is not represented in the shows we watch, the films produced, the radio we listen to.  The depiction of disability in the media plays a major role in molding the public perception of disability and so the lack of representation in the media is a huge problem.

Then when we have disability in the media, it is often portrayed negatively.  The media generally depicts people with disabilities according to common stereotypes such as pity and heroism, known as the ‘pity/heroism trap’ or ‘inspiration porn’.  There are few roles and characters that are played by someone with a disability that are not about them having a disability.

The director said she couldn’t find an actor with disabilities and so went with the able bodied actor that is in this role.  Imagine if this was about a black character, imagine the director saying they couldn’t find any good black actors and so they are going to ‘black up’ a white actor.  This is how it feels to see able bodied actors ‘cripping up’.

As Michaela Hollywood points out “Director Thea Sharrock said that she wanted to avoid portraying the realities of living with a disability in the film, such as being hoisted into a bath or being helped to clean, because she wanted to make Will’s disability “more normal”. In doing so, she strips the character and film of any real meaning.

Sharrock is right that disability needs to be normalised, but that will only happen when people like her stop leaving my reality on the cutting room floor.”

Some people may say that I am overreacting, that this isn’t real life, that it is ‘just a film’.  But I believe that films like this are perpetuating such negative stereotypes about disability that we have to speak up.

I would just ask for people to step back from able bodied privilege and think.  Think about the message that this film portrays, that the disabled character feels his life is not worth living because of his disability, that he believes that he is such a burden on everyone around him that they are better off without him, that he is not worthy of life.  Then remember that these are the words coming from an able bodied writer, not a quadriplegic man.

Sam x