Me Before You and the big disability debate

me before youAlex Bailey/Warner Bros

Warning: contains film spoilers

If you have met one person in a wheelchair. You have met one person in a wheelchair.

When I was in Sixth Form studying hard for my A-levels (cough), me and my friends would sit around the common room having deep philosophical debates like: “which teacher would you snog to save your Mum’s life?” and “would you marry someone on the dole who had no money?” Cutting edge stuff.

One of the more interesting discussions was what would you do if you lost a leg and ended up in a wheelchair? At 17 years old, losing the ability to use your legs was the worst thing ever. Yet in context the worst thing ever was also if Billy Boneman blanked you or if we had to do double maths on a sunny Friday afternoon.

The naive, centre-of-my-own-universe teenage me actually didn’t think that the use of a wheelchair was the end of the world stuff. I argued that there were worst things. For me, the idea of losing my sight was more galling. For how would I read, write, watch films – all the things I adored? But as I stated I was naive and ignorant.

A two-day school retreat with pupils from our neighbouring school for the blind put those misconceptions firmly in their box. A little bit of education goes a long way.

Now I live in a world where a wheelchair is part of our lives. A pretty dominant part of our lives. It has to be taken into consideration in most of our everyday decisions. Where shall we go today? Is it accessible? Therefore, is it worth it? Where shall we live – shall we adapt this house or move? What about schools? When do we need a wheelchair-assisted vehicle?

That is why the debate surrounding a new film due to open next week hits home. The film Me Before You is based on the best-selling book by JoJo Moyes about a quadriplegic man named Will who is suicidal because he has become disabled.

It has evoked quite a response from disability campaigners saying that the film “capitalizes on existing widely held negative ideas about disability and exploits them as fodder for entertainment” and “on top of lazy writing, this film will leave a tragic legacy. Aimed at the younger audience, the book and now the film will create another generation that is sure that they’d rather die than be disabled and that assisted suicide is a noble thing to do.”

I listen a lot to disability campaigners these days who are trying to make the world a better place for my child. I am hugely thankful that social media provides me with a platform to access a viewpoint that I can never garner as parent caregiver – the actual direct experience of living with a disability. I applaud their  stance.

So I very much get the uproar. I agree to not have a disabled actor play the role of a disabled character is shameful. Also the underlying debate of is life worth living if you are “confined” to a wheelchair? is perhaps not given the careful consideration it merits by the Hollywood big-wigs.

I really do get it.

I do…

But…

I loved Me Before You. I am a big fan of JoJo Moyes and this is one of my favourite books ever. I loved it so much I recommended it to everyone.

This was before disability touched my own life.

You see what I think is missing from the very fruitful debate is that we are probably doing a huge disservice to the millions of movie goers that watch this film. Just because the plot of this story is that Will couldn’t live with his disability doesn’t than mean that everyone who watches it will suddenly think “oh yeah everyone in wheelchairs would be better off dead”.

Come on…

Seriously.

You know why I loved the book so much. It was because it haunted me for a long time afterwards. I hated the ending. I hated that he gave up. I hated that he couldn’t see that his life was so worth living. I hated that the only person who thought he was a burden was him. I hated his spoilt, pompous, over-privileged attitude and I hated what he did to his parents.

I hated that he took another emotionally broken person and broke them some more.

I hated his cowardice. I hated that no one could make him change his mind.

(I hate now that he couldn’t appreciate how relatively easier his life was compared to others in the same boat due to his wealth – no fighting for adaptations, or care packages, or equipment. But I didn’t know about any of that when I read the book)

I hated all that and that is why I loved the book.

And I think a lot of people who read the book loved it for the same reason.

I hope this will be the case for those that watch the film too.

It made me stop and think. And that is a powerful tool. It made me think about what it is that makes your life worthwhile? What would be my breaking point? How would I adapt if the same fate befell me? I thought about why out of two main characters, who were both picking up the pieces from tragic events, one was able to go on while the other wasn’t?

I know some book snobs will scoff, but for me the book was about so much more than disability. It made me see that strength of mind is stronger than physical strength.

That said, I am thrilled that for a small time it is putting disability on the agenda.

The world is changing – disability is around us more than ever. More and more of us are touched by it in some way. As humans we are genetically programmed to adapt and survival of the fittest is an evolving concept.

More children, like my son, are surviving the neonatal period whereas in previous decades without the current medical advances they would have perished. For Gabe, it would have been a simple milk protein allergy that would have robbed him of the ability to thrive.

On the other end of the spectrum, medial intervention means more people are living longer but we are seeing growing levels of disability in the older populations than before.

Anyone with frail parents will have experience of this.

The advent of the baby boom generation into this age group – the huge group of children born after the second world war who grew up projecting a rebellious, idealistic attitude that promised to reshape society – will be a game changer. Disability services will be stretched to their limits hopefully forcing positive reform and changing perceptions of impairment.

The degrees of separation between the able and disabled world are getting smaller.

For all these reasons it is too simplistic to say that the film Me Before You is dangerous for force-feeding us “yet another disability stereotype”.

I think the disabled community should see it as an opportunity to push the debate forward. Those that watch the film will have no choice but to ponder on life in a wheelchair and while you have their attention, build on it. Now is a good time to highlight all the important current campaigns that would improve the lives of people with disability and chronic disease.

No one I knew who read the book wanted Will Traynor to kill himself. We championed him. We willed him to see what we could see.

That he had lots to offer life and life had so much more to offer him.

And there will be lots of people out there now struggling with the same demons.

Me Before You might yet challenge pre-conceived ideas about disability for all the right reasons in all the right ways.

I really hope so.

silver 20.3 (126)

 

P.S. I have not yet seen the film and reserve the right to change my opinion after viewing.

 

5 Comments on Me Before You and the big disability debate

  1. Jane Scott
    May 28, 2016 at 3:47 pm (10 months ago)

    Oh I’m so relieved-was staying out of this one-I loved the book-and completely agree with the points you made.Phew.
    Jane Scott recently posted…Saturday SiblingsMy Profile

    Reply
  2. Amanda Masters
    May 30, 2016 at 6:26 pm (10 months ago)

    I love that the book and film are making people stop and think, but I also hope that people will not use either as a base to form hard and fast ideas on disabilities and the choices that people who live with such disabilities make.
    As much as people didn’t like the choices that Will made, they were his choices to make. I didn’t agree with my dad when he wanted to end his life when he ended up in a wheelchair, but he had to want to live for himself. Such an emotive topic, I really appreciate your words on the matter!
    Amanda Masters recently posted…Sunshine & ShowersMy Profile

    Reply
    • Alison
      May 30, 2016 at 7:08 pm (10 months ago)

      I am sorry to hear that about your dad Amanda. I don’t think I knew that from your blog. It is very emotive. If I was a wheelchair user I would probably be outraged too by the storyline – but then there is the darker side of this. Did you hear the lady on Radio 5 Live yesterday? xxxx

      Reply
  3. Britney Wain
    July 6, 2016 at 10:52 pm (9 months ago)

    There are plenty of people in wheel chairs who still choose to embrace the life they have. Just look up the accomplishments of the severely disabled, two of my favorites are Cynthia White and Jarrett Martin. Not everyone will be able to enjoy a life like Cynthia White or Jarrett Martin,the truth is some will be abandoned to live in long term care units; but their lives inspire and let you know living not just existing is a very real possibility, no matter your level of disability. The great thing about today is with the availability of social media even those stuck in a long term care unit can get their story out there, and there are plenty of people who would love to help them enjoy life. There are support groups and even dating sites for the disabled. However, this isn’t just about people in wheelchairs because any level of disability has to be brought to the table, realize it or not this movie has already done that. This is a very detrimental book/film, everyone disabled has that moment when you think I’m such a burden what is the point, what am I doing to my loved ones? This movie gives people the notion that your loved ones are better off without you, and the way others view you matters more than your life and happiness. My health problems are an inconvenience for my family, but I am not a burden and neither is anyone else. I can walk but I get confused after seizures, I have to use straight catheters which means we can’t stay out for a long time, using public bathrooms to straight cath is extremely dangerous; I have had so many utis that they’re starting to become resistant. I have problems with my balance a lot of the time, walking is often a task that takes a lot of concentration. I need my husband to help remind me to take my medications at times. I have a lot of dr visits, I see 8 drs for the care I require. I cannot legally drive I had a very bad seizure in college and hit a telephone pole. For a while things got better, but now seizures are very frequent in my life as well as heart rate and blood pressure issues; I have a rare condition called IST. It is one of those “invisible” conditions that have barely been researched. Walking and even sitting upright for a while can cause my heart rate to sky rocket and my blood pressure to plummit. Being my age I appear healthy so seeing a very thin 29 yr old confused and leaning on walls attracts a lot of negative attention. People assume I’m crazy or on drugs. My mother is embarrassed about the possibility of people seeing my catheters and daunting bag of medicine. My father tells me I will kill my husband from stress, negative things stink people are judgemental but oh well it’s the good with the bad in every situation. Not being able to drive I’m home with my children, whereas used to I worked full time and went to school full time, I know no amount of education would have been enough for me nor any amount of money. I would have just kept trying to raise my status level, which is such a waste of life. I have quality time with my children I wouldn’t have had before. Making dinner on my good days is so rewarding I appreciate so many things I wouldn’t have stopped to think about before, what I believed to be important wasn’t at all. I have a much deeper appreciation for my husband than I ever would have, had I not developed health problems. Disability forces you to have a different outlook on life than you would have, it does getting depressing at times which makes this movie even more dangerous. This movie implies that it is okay to dwell on all the negative aspects of your life give up and kill yourself. I know my children would not be better off with me dead, I know my husband loves me, and as for what my parents say oh well; I know they mean well and love me. Everyone deals with their emotions differently who knows maybe they think they can scare my body straight. I can’t help what everyone else thinks, but I can control my own beliefs and refuse to embrace negative thoughts and actions. I do what I can when I can, that is living life boldly.

    Reply
    • Alison
      July 13, 2016 at 9:23 am (9 months ago)

      You are so right as an able-bodied person I can’t put myself in your shoes no matter how much I try. Thank you for the insight and for sharing part of your story. I wish you tons of happiness as you live life boldly. Best wishes to you and your family Britney xxx

      Reply

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