Steven Spohn is a writer and also the COO and outreach director at AbleGamers, a charitable organization dedicated to helping disabled people improve their lives through gaming. Steve wanted to write something about an upcoming film based on a novel, Me Before You by Jojo Moyes, and he asked if it would be a good fit here. And I think it’s important to have his voice heard with things like this. So, here’s Steven! (Oh, and don’t forget to read another post of his here — “Your Last Good Day.”)
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An Open Letter to Jojo Moyes and Aspiring Writers —
As a child, I never really got to “see myself” on-screen in the same way that other children did in Superman, Batman or Xena.
Sure. I could watch Keanu Reeves as Neo, indulge the fantasy, dive into the escapism and picture myself as The Chosen One. After all, no one can fly or dodge bullets like Mr. Anderson, so the fact that I couldn’t walk like he does wasn’t exactly a stretch of my imagination.
Historically, Hollywood releases a movie with a profoundly disabled character once every few years. And although the frequency has been increasing as disability becomes more accepted in the mainstream, main characters with severe disabilities are extremely rare and (in my experience) never seen in romances.
In fact, the lack of main characters in books or TV with severe physical disabilities confining them to a wheelchair are so rare that if I had a quarter for every time someone asked me if my favorite fictional character was Professor Charles Xavier, I could literally buy you a Ferrari.
So, you can probably imagine when I first saw the trailer for Me Before You, a movie depicting a quadriplegic man romancing a young female caretaker and sharing some of the same thoughts most of us with severe disabilities have, I would’ve been excited. “Finally! A romance about a quadriplegic man and an able-bodied woman.”
**Spoiler warning below for the book and movie Me Before You**
And I was, until I read the book.
The female lead Louisa is hired to take care of Will, which unbeknownst to her is a type of suicide watch. When she finds out he plans to go to Dignitas — a place in Switzerland that helps people commit assisted suicide, she’s distraught. Eventually Lou comes around and decides she will do her best to change his mind during the remainder of the six-month window Will promised his parents he would use to consider his choice. In the end, despite falling in love with each other and Louisa begging Will not to go, he decides to stick to his decision and end his life.
“I don’t want you to be tied to me, to my hospital appointments, to the restrictions on my life. I don’t want you to miss out on all the things someone else could give you. And, selfishly, I don’t want you to look at me one day and feel even the tiniest bit of regret or pity that — … You have no idea how this would play out. You have no idea how you’re going to feel even six months from now. And I don’t want to look at you every day, to see you naked, to watch you wandering around the annex in your crazy dresses and not… not be able to do what I want with you. Oh, Clark, if you had any idea what I want to do to you right now. And I… I can’t live with that knowledge. I can’t. It’s not who I am. I can’t be the kind of man who just… accepts.” (pp. 325-326)
Men and women who are severely disabled fight demons that speak the words above almost every day. There is not a man or woman who is quadriplegic or near the quadriplegic stage of a progressive disease who has not worried about being a burden to their loved ones or if being in a relationship is fair. Those questions are in the back of our minds every moment of every day.
‘Me Before You’ was an opportunity to create a commercially successful, Nicholas-Sparks-level, true genre-defining romantic movie starring someone who is severely physically handicapped conquering his demons, winning the girl and riding off into the sunset like we see in so many other Hollywood romances.
If those types of books and movies were more common, this movie wouldn’t even be controversial because it would just be one movie of dozens. Unfortunately, there are very few scripts written about severely physically disabled people, let alone in romance.
Moyes could have tackled society’s view of people with disabilities and sexuality. In the view of many people, just being disabled, in and of itself, takes sexuality away from being human. Instead, this story perpetuates the stereotype of sexually neutral disabled people by painting the picture of a sexually attractive quadriplegic man and then neutering him.
(The most sexually intense scene between Lou and Will is a few kisses.)
Instead we get a tragedy. We get thousands upon thousands of people with disabilities who will finally see a character like themselves on the big screen in a real Hollywood blockbuster who chooses to end his own life because being disabled is too hard.
Even though Will gets the girl, has ridiculous amounts of money, power, oh and A CASTLE, he can’t imagine living life with a ridiculously higher quality of life than most people with disabilities will ever be afforded.
So, if the movie isn’t about them getting it on or Will’s triumph over adversity, what is the point of the movie?
Will is a plot device.
The book was never about Will. The story is about Lou and how Will’s influence changes her life. Lou fails to show Will the joy that can still be had in the world, even if you find love, because you are dealing with some sort of disability.
Goodreads interviewed Jojo Moyes at one point directly asking if she consulted with anyone with quadriplegia before writing the book:
“Not quadriplegics. The thing that really informed it was a member of my family who suffers from a progressive disease. I have been involved in feeding her, taking her out, and that kind of thing.”
While it’s disturbing she did not conduct any interviews with people who are actually quadriplegic, Moyes has a deaf son. She’s personally seen the attitudes some people can exhibit around her son calling the negativity “frustrating” in the same interview. She knows what it’s like to have people presume things about you or your loved one without actually knowing them.
Supporters of this book hope it will help open a dialogue on the subject of assisted suicide. But what a lot of able-bodied supporters don’t understand is when you are living life as a quadriplegic person, you’re dealing with the dark themes presented in the book and movie every day.
I’ve had perfect strangers walk up to me and ask if “my dick works.” I’ve had the heart-wrenching conversation with lovers explaining the restrictions on my life and how those restrictions would affect them. I’ve had people literally say to me “I’m not as strong as you. If I was in your position I would’ve killed myself.”
In real-life, the girl doesn’t always get the boy, sometimes people decide to commit suicide, and love doesn’t conquer all.
The Christopher Reeves foundation released a brief but powerful statement on the movie:
“Me Before You touches on poignant themes about what it is like to both live with a spinal cord injury and care for someone as a family member and caregiver.
However, while Jojo Moyes’ book is defined as fiction, the character of Will Traynor is very real to 5.6 million Americans living with paralysis. At the Reeve Foundation, our mission includes enhancing quality of life, independence and health for all individuals living with paralysis.
The Reeve Foundation does not believe disability is synonymous with hopelessness or that living with a spinal cord injury is considered a fate worse than death.
“Disability does not sideline or disqualify someone from living a full and active life. Everyone living with paralysis can live boldly.”
After the former man of steel himself, Christopher Reeve, was in an accident leaving him completely quadriplegic, his wife Dana wrote how to be a wife, not a caretaker. That yes, there are some parts of someone’s care that can be challenging, but ultimately, you’re still human. A woman and a man in love, lust.
You see, for people like me, Christopher Reeves, and millions of other people who have quadriplegic conditions, this isn’t just a movie. This is people seeing a misrepresentation of what it’s like to be quadriplegic. It’s like if Hollywood took your life and focused on the darkest hours, ignoring all the triumphs, and only noted the worst-case scenario.
There are so many “meet cute” heartfelt, endearing, hilarious, sweet and tear-jerking parts of being in a relationship with someone who has a disability that you will probably never get to see on the big screen.
You probably won’t get to see a character working out like Rocky to be able to stand for just a moment on his wedding day like my friend, Marco, did. You probably won’t get to see a character smacking her boob off furniture trying to get into sexual positions more convoluted than the Kama Sutra like my girlfriends have done. You probably won’t get to see anything like most of the perfect romance or rom-com stories I know because getting Hollywood to back these kinds of plots in books or movies is difficult, and the one time they did it was written by an author who didn’t even bother to interview quadriplegic people.
The reason we’re seeing so much of an outcry from the disability community is that people with disabilities are often pigeonholed into inspiring others to “live boldly.” A quadriplegic man “sacrificing himself” so that his love can live “a better life” isn’t a heartwarming sacrificial moment, it’s a heartbreaking confirmation of our worst fears. Because our culture is so heavily rooted in Hollywood, young quadriplegic people could see this movie where the “hero” commits assisted suicide as confirmation that the demons in their head might be right. Maybe life isn’t worth living. Maybe the burden is too great.
So, I’m here to ask you, aspiring writer, please don’t make the same mistakes. If you’re going to write about a minority or disability, do the same level of research you would do about a foreign land or a subject you have never personally experienced. Realize that you could accidentally be playing into the fears of a group you’re trying to support.
Please remember that people with disabilities are not plot devices.
To those who are not writers: Please don’t approach random people in wheelchairs and ask if their private parts work.
(Edited to add: best to not approach any stranger to ask them anything about their privates. — c.)