woman showing ileostomy colostomy bag

Me Before You

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.

stoma ileostomy bag woman me before you disability

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?

stoma ileostomy bag woman me before you disability

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

 

 

 

3 replies
  1. Mrs TeePot
    Mrs TeePot says:

    Never heard of the film but I certainly wont be watching it, it sounds offensive and awful.
    I deal with mental illness and regularly feel a burden, I have attempted suicide a few times, it is not bold, and to be in that head-space where it becomes an option is terrifying and unexplainably sad. There are no words to get across just how low you have to be to hit that point, not just low depression wise, but low in self-confidence, in self-belief and self-worth.
    Romanticising suicide is an all round bad idea, and an irresponsible bad idea too. People need to be supported and, as you say, disability, in all its forms, needs to be normalised.

    Reply
  2. Karen Lester
    Karen Lester says:

    I’ve actually read the book, and I found it deeply moving, thought provoking and actually raised my awareness of disability. I am not disabled but I have disabled family members. It gives perspective of how life can change and what could happen.

    If the film follows the book, in my opinion it does not romanticise Assisted suicide. At all. This is the story if one person, his story, his feelings, his life, it does not generalise or pretend to represent all wheelchair users. Or all disabled people.
    This is a man who is incredibly active, does extreme sports etc. and who has an accident meaning he loses the ability to do anything for himself. He personally decides this is not a life he wants and has the assisted suicide planned long before Lou comes into his life.
    She comes to help him as a carer and falls in love with him. They have a fun times and she tries to talk him out of it, but his decision remains unchanged as he cannot live like that. Him personally, not all quadraplegics. Part of it may be about not being a burden to Lou and his family, not holding them back, but it is all about him and how he feels, trapped, no independence and it is something he chooses to do.

    Assisted suicide is something that people campaign to be allowed to do. Because they want to take control. They can’t live they way they are, they are trapped in a body they cannot control. It is in the media constantly that someone has gone to Switzerland to take control of their life and death.
    Yes, there may be backlash but each person is different and their reasons differ.

    That’s just my opinion and I look forward to seeing the film, as I am hoping it is as deeply emotional and enlightening as the book was.

    Reply

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