Me Before You: Better off Dead Than Disabled?




The movie version of the book Me Before You: A Novel (Movie Tie-In) came out last week and the disability community isn’t happy. And for once, I disagree with my community.

I should mention that I haven’t seen the movie (yet), but did read the book about six months ago and liked it a lot. I should also warn you that this is an opinion piece and therefore spoilers abound.

A short (spoiler-intense) summary: Louisa “Lou” Clark gets hired on to provide care for Will Trainer, who became a quadriplegic in an accident. And he wants to die. Will has promised his parents six months and they have promised him that if he hasn’t changed his mind, they will accompany him to Dignitas, a Swiss clinic that provides assisted suicide services. Louisa and WIll fall in love, but it doesn’t change his mind.



Objections to the movie state that it is a disability snuff movie. That it has a message that the disabled life isn’t worth living, that you become a burden to others, and the person with a disability (and their death) being used as a vehicle for the character and personal development of the able-bodied characters. We all know how much Hollywood loves to kill off people with disabilities and illnesses for the entertainment of the masses and on the face of it, Me Before You is just another variation on a theme.

Except, I’m not so sure.

I’ve used a power wheelchair since my teens and I’m an active disability advocate. I’ll be the first to have a rant about people with disabilities being used as plot devices for character development in the able-bodied (Million Dollars Baby, anyone?). And the general stereotypes about us being better off dead.

That said, I quite liked Me Before You. I thought it was a decent and authentic exploration of the issues. It portrayed one person who wanted to die rather than live. It did not say that all people with disabilities wanted this or should it do this. Lou connects with a community of other people with SCIs and hears that it is very possible to move beyond that initial depression and live boldly and fully with disability. Every person who is close to Will tries desperately to help him see that there is still a beautiful life to be led. No one tells him he’s a burden, in fact other than Will himself, no one thinks he is a burden.

I think the message is loud and clear: disability is not the end of your life and that is the very point that Lou tries to show Will. He won’t hear it, though. He might be in love with her, but sees the rest of his existence as torture. Before his accident, he was active at work and participated in extreme sports. Losing his body is devastating to him.

Obviously, I will also be the first to mention that spending that six months stuck in your parent’s home is not conducive to seeing that you can live a full life with disability. I don’t understand why he is not working — after all, his job was mental, not physical — and I don’t quite understand why he’s not living independently in his own apartment in London. He had a good job, was quite wealthy and can obviously afford attendant care, so why he is languishing in the country is beyond me. No wonder he is depressed.

Ten years ago, in the very early stages of this blog, I wrote about The Sea Inside, a movie about the Spanish writer Ramon Sampedro who chose to end his life rather than live as a quadriplegic. Like Will, he isolated himself, and I made the same argument then as I do now. Reconnecting to the beauty in life is a lot easier if you actually live it, rather than being stuck in a bed on the third floor of a farmhouse or in the relative luxury of a country home. That does not give life a chance.

I’d also argue that not being able to see the value in living without the ability to walk is a very able-bodied perspective. I can’t tell you how many times I have seen or heard people say a variation on “if I lost the ability to walk, I’d kill myself.” It reflects the stigma and stereotypes that are still so very much part of the stereotypes around disability. And I believe it shows a lack of imagination.

That said, I also fully believe that someone who has a disability should not be made to live because others — even so many of us in the disabled community — have found a way to live well. With the right resources and support, you can live boldly, live well, and create meaning in your life. Even participate in adventure sports, should that float your boat.

But just because I have found a way to love my life, because you have found a way to do that, doesn’t give us the right to prevent others from saying no to living with a disability. The truth is that some people never get over it, never come out of the darkness. Should they be doomed to live in misery just because we think they should? Should they be doomed to have to find a truly terrible way to kill themselves (and I’ve heard of several who ended their lives in very terrible ways), rather than have the option to die in comfort and with dignity?

I believe in choice and the right to live life the way you wish. That includes the right to end it, if that is your heart’s desire. Ideally, that decision should come only after psychological assessments, sufficient time to give depression space to ebb, and adaptation time to settle in, as well as all the bells and whistles that are involved in a place like Dignitas. More importantly, I believe the person should have the opportunity to take a stab at actual life — meaningful employment, independent living with quality attendant care, and all the other supports that can enable you to truly live. 

But if after all of that, someone is still desperately unhappy and can see only ashes, who are we to tell them otherwise? Do we do each other a disservice by refusing to talk about that part of the disability experience?
  

Comments

cathy kramer said…
Thank you so much for this post Lene. I enjoyed the book when I read it and it has definitely given me lots to think about. Unfortunately, I haven't known how to put those thoughts into words and have felt sad with all the attacks against it.
Leslie said…
OMG! Thank you, thank you, thank you! I haven't read the book, but I was feeling ashamed to admit that I saw the movie and liked it. Like you, I believe in choice. And I felt that Will's feelings about his disability were his own. He wasn't saying he wanted to die because society hates the disabled. He just couldn't accept himself as he was. I could go on and on, but I just want to thank you to putting voice to what I've been wanting to say.
Kirsty Madden said…
Beautifully said!
Rick said…
Lene: My initial reaction was to agree with you point of view. But I thought you know I have not read the book or seen the movie so I really am not in a good position to say one way or another. One thing the controversy has done is made me want to see the movie.

By the way please do not tell anyone I said that, I have already lost my man card once this week.
Caroline said…
I do want to read it (before seeing the movie). I strongly believe also that we should be allowed to make our choices. Bad medical diagnoses can change so much that people who have not been through them have no idea of the decision process faced by those of less healthy.