Steven Spohn: I Am Not Your Plot Device

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.”)

* * *

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.”

(Trailer: https://www.youtube.com/watch?v=Eh993__rOxA)

**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.)

Steven Spohn: Website | Twitter

Donate to AbleGamers here.

120 comments

  • Thanks for writing this – a really interesting and thought-provoking piece.

    My instinct would’ve been to dislike *more* a plot where he overcomes his fear/frustration and they live happily ever after (of course there are gradations between these things). But upon reflection that’s actually more my disenchantment with happy endings generally than considering it with a quadraplegic character specifically, and the nature of the character and their current representations on-screen should probably outweight my personal preference.

    Out of interest, is his eventual decision presented as some sort of heroic sacrifice?

    Disclaimer – not read the book or seen the film, and will likely do neither.

    • You know, it’s sort of cuts both ways. Although there is definitely too much “look at disabled people so that you feel better about your own life” in the world, I would’ve rather that the first Hollywood movies starring the mother of dragons focused on falling in love with a man who wants to live.

      • I think they could’ve still had the elective suicide conflict, but either the author should’ve chosen a *progressive* disease like she was initially inspired by or had him maybe attempt to at the end, but have a romance style happy ending where she gets there and is like “don’t do it, I love you” and they get married. I can understand the argument for assisted suicide in cases where the person’s condition is going to get much worse and they will eventually die anyway, they are in an extraordinary amount of daily pain with no opportunities in sight to reduce it, or the other option would basically be to let them slowly starve/dehydrate to death (I’ve seen it in the hospital and it is a slow, horrible looking process that probably costs the system quite a bit of money). But I don’t know why the author would choose of all cases someone who falls in love and could participate in the world for many years to come.

  • Very disappointed to hear this about the book. I haven’t read it because romance novels aren’t my calling, but I was excited to read about a mainstream novel with a disabled main character.

    Now I’m just pissed.

    [STALKS OFFSTAGE MOODILY]

  • For those interested, there’s a French movie called The Intouchables that does a great job of not neutering or inhibiting the potential the quadriplegic character or the low-income uneducated ex-con. It’s about how people can live a normal, full life with ups and downs and sex and heartbreak and courage and temerity regardless of their circumstances: it’ll look different, but it won’t be inhuman.

  • Thanks for the thoughtful article. The author might’ve been better served to heed the old advice, “write what you know,” rather than “write what you guess,” or “write what will make you a wad of money.”

  • I loved this book. LOVED.
    To me, it was Louisa’s story. A growing-up, a seeing-the-world-beyond-your-front-door coming-of-age story. Under Will’s mentorship, she was experiencing things she’d never before considered, and she learned to tap her own personal strength. It was also a story of dignity and respecting one’s choices. A romance? No. A love-story… yes.
    One very important point. Will didn’t decide on assisted suicide to spare Louisa. His choice was made long before she came into his life. His mother hired Louisa to talk him out it. There was no sacrifice, and to have him live at the end, imho, would have steamrolled HIS dignity and wishes. It was his choice, his life.

    With all due respect, I’m not sure we can ask (or should ask!) authors to be the champions for a cause. I’m not condoning this author’s shoddy research, but as a fiction writer, she needed to tell the story she wanted to tell. We have the choice not to buy it, read it, or see the movie.

    And yeah… nobody, NOBODY should ever ask those kinds of personal questions. Yuck. Hope you have a quippy, cutting response.

    • That defense has never made any sense to me. It’s the same one people use for writing female characters who get raped to further a man’s development. Or for POC characters that are murdered to help white heroes become motivated. Fiction influences culture and helps us understand each other. If you’re gonna write about marginalized person, you need to understand the history of their struggles and the harmful ways bad representation has been. It IS an author’s job to understand how their work fits into the broader cultural landscape. Fiction does not exist in a vacuum.

      You can like Me Before You, but if a someone points out why it’s offensive–especially someone with personal experience related to the issues–then it really helps to listen to them.

    • Rebeca pretty much nails the response to this line of thinking. Not everyone is going to agree with me on this one and that’s okay. There are people, even within the disability community, who are quite in love with this book. However, it’s plain to me that his decision was re-made AFTER they fell in love and that’s something that I really tried to drive home in this piece.

      When the character says “to see you naked and not be able to do the things to you that I want to do” is revealing a motive. Not only was he unhappy with his life being spectacular and unable to enjoy it the way he wants to, falling in love with a beautiful girl who loves him further pushes Will to his decision. The way the character was written, we are led to believe that the happier he is, the more torture he feels.

      From my point of view, I’m not asking her to champion giving people a disability sexuality or campaigning for or against assisted suicide. I am asking if Hollywood would stop questioning if life is worth living if you are disabled. And at the very, very least, they could have shown Will to be in excruciating pain and that would be a viable reason for assisted suicide. Not because he couldn’t bend her over the bed the way he wants to. (also that language is a little creepy, if I’m honest)

      • I’ve made the point and I will make it again. People love to bleat about this book being primarily about assisted suicide and choice. But would Will have even considered suicide if he wasn’t depressed … and would he have been depressed if he lived in a society that considered disability different, rather than tragic and horrible? I don’t think so.

        You cannot divorce this book from the ableist context it exists in. I’m sorry if that offends abled readers’ feelings, but the dignity of the disabled community matters just a tiny bit more in my eyes.

    • Yes but he couldn’t have committed suicide at all had others not helped him and he only did so because of intrusive thoughts. I’m wheel chair bound and have the same thoughts but even when they get bad enough that I see myself as only a drain on others I never think to ask them to kill me. Suicide has nothing to do with dignity and everything to do with depression. Making others help takes away their dignity.

    • I think Rebecca and Steven said it well in their replies. But also did want to point out that if this “was also a story of dignity and respecting one’s choices, ” then where is Will’s respect for Louisa’s choices? That’s an age-old, still crappy theme that runs through both Hollywood and society–that somehow the man know’s the woman’s mind/heart better than she does and can make better choices than she can. Why not respect her enough to believe her when she says she wants to be tied to him for the long haul?

  • June 2, 2016 at 1:58 PM // Reply

    Good blog post. Thank you very much. I don’t have a disability but my partner does and we’re considering having a foster kid move in who’s in a wheelchair. I’m shocked the writer of this movie could not be bothered to talk to people with quadriplegia. Uh, yeah. That might inhibit her determination to bump the character off for the good of all, or whatever. Thanks again. Great post. I’ll be sharing this one.

  • Mr. Wendig, you are force for good. I’m proud to be in the same (well, very small potatoes version) of the writing club you’ve made yours. Thanks for this.

  • “(Edited to add: best to not approach any stranger to ask them anything about their privates. — c.)”

    This is really unnecessary. On a post asking people to center disabled people’s dignity, you’ve added an All Lives-esque note to re-center the issue on non-disabled people as if both groups are at equal risk of prying, dehumanizing questions.

    Anyways, thanks for this post Steven, it’s spot on. And thanks for Able Gamers, which has helped me keep playing games as my disability progresses. It’s a great resource.

    • That’s what that addendum looked like to me, too.
      This was a great post — too bad the book and movie went in that direction.

    • Thank you for the support. But allow me to say that I didn’t read Chuck’s edit that way. He’s simply adding a note that asking anyone if their private parts work is unacceptable. It’s just not acceptable behavior. So why do people think it’s okay to do that to me simply because I’m in a wheelchair?

      Chuck has always supported the disability community from my work to @snarkbat to AbleGamers. He’s a terrific ally.

    • Do you think it’s okay to ask strangers questions about their genitals? Given the nastiness surrounding transgender bathroom usage, I think it’s a reasonable edit to make and I don’t believe it derails the post, its value, or its impact.

  • Great post and food for much thought, Steven. Thanks for writing it (and thanks for sharing it, Chuck). I read Moyes book and loved it–right up until 2/3 through when it started to ring false and the very issues you bring up made me think, Oh, no, really? And then her ending confirmed my fears. I didn’t buy her ending. At all. Will was this great, totally dynamic character . . . and then suddenly he wasn’t (which was not in keeping with his personality at all) and was just used as, yes, a plot device.

  • Brilliantly said, Steven, and thank you for bringing your much-needed voice to the conversation, on this topic and on others also.

    On a personal note – thank you for saving me from seeing this film. I’m more an action/sci-fi moviegoer anyway, but if I’d gone to see this and he killed himself at the end, I’d have been devastated. I saw the ads and figured it WAS going to be a “guy gets girl, happy ending” story – and frankly, I’m horrified to learn it’s not. What a wasted opportunity, on so many levels. People see enough tragic endings in real life – at least in the movies, we’re all supposed to get a happy ending. (From my perspective, at least.)

    Some of my novels (including my work in progress) do have disabled characters, and I agree with you that the research is critical. It’s better not to include a person with a disability than to disrespect the reality people who actually have the condition by making it up.

    • One of the things my mentors like Dean Wesley Smith, Chuck Wendig, KKR, and others taught me that you have to have a happy ending. What bugs me is that Lou gets the happy ending by way of Will sacrificing himself.

      If you are doing research, I’m sure you are going to do the disabled character justice. Talk to people and find out what it’s like. There’s almost no excuse for not reaching out to the disability community. Most people are very willing to speak about their disabilities. I’m sure you’re going to do great!

  • Thank you for this! I’ve read a few articles on the reasons this movie was making people uncomfortable, but you explained it the best for people like me, who are able bodied and may not totally get it. I missed the hype and the book and only now started reading the articles opposing it and I’m glad I got to read your perspective so that I can better articulate what didn’t sit right with me when I finally read the synopsis.

    Thank you!

  • I don’t know if my comment was eaten, but if it was, I’ll rehash it here. This book is bullshit, for one very simple reason: people keep bleating that it’s about depression and assisted suicide. It’s not. Can you honestly say (general you) that you think Will would have BEEN as depressed if he didn’t live in a society that pathologizes disability, that sees disability as a problem or a tragedy, that places a human’s intrinsic value in what they can do rather than who they are?

    Ableism is having a PC brain, meeting someone with a Mac brain, and trying to act like the Mac is a broken PC.

    • I love your line about ableism SO MUCH. My wife is high-functioning autistic, and I cannot stand the sheer number of people who think that because her mind works on a different level that she is less of a person. These are usually the same people who ask me how I can stand to be married to someone who has needs they consider “unfair” or “hard to deal with” such as a deep social anxiety. My answer to them is always the same: I love living with her in all the ways that she is herself, and what would be “hard” would be living a day without her. I’m going to use that PC/Mac brain thing next time I have one of those conversations. Thank you for that, and for holding up all people as being awesome and valuable because ALL PEOPLE ARE AWESOME AND VALUABLE.

      • I am baffled by those people. Being around people with social anxiety isn’t unfair, nor is accommodating their needs. We all have issues and quirks that make life more interesting. You avoid ‘death by chocolate’ style cafes when you’re with friends on diets, or who have diabetes. You make the venue child friendly when catching up with friends who have kids with them. You avoid places with lots of stairs or steep inclines when you’ve got friends in wheelchairs or crutches. No loud places when you want to chat with a hard of hearing friend. No Jesus jokes in front of the highly religious aunt. Working around social anxieties is no different than respecting anyone else’s boundaries or needs.

      • YES, I’ve seen this, both directed at my best friend/roommate and at me (my roommate is physically disabled, and I’m autistic). Most days I can hold a conversation and drive a car and wash dishes, but every so often, everything comes crashing in on me, and I can’t for a day or two, and it’s in those few days that I find out who my friends are. My dearest friends know that while I’m really great at some things, I’m not great at some other things, and instead of comparing me to some mirage of normal, they help me with what I suck at. I try to do the same for them. Especially for my best friend, who has happily ripped people new posterior crevices for being horrible to me. It just seems that simple to me.

        My best to you and your wife; it’s infinitely easier to live while autistic when you have kickass support people, and having a husband or wife like you (apologies, I didn’t want to misgender) really does matter.

  • As a romance reader and writer, Me Before You isn’t a romance nor is the movie.

    According to the Romance Writers of America, the main plot of a romance novel must revolve about the two people as they develop romantic love for each other and work to build a relationship. Both the conflict and the climax of the novel should be directly related to that core theme of developing a romantic relationship, although the novel can also contain subplots that do not specifically relate to the main characters’ romantic love. Furthermore, a romance novel must have an “emotionally satisfying and optimistic ending.”

    Me Before You fails the test of an “emotionally satisfying and optimistic ending.” It isn’t a romance.

    I completely agree with Mr. Spohn’s criticism of the book and movie. The whole premise of this work just frustrates me. Thank you for this post.

    • Another romance writer here. Ditto what you said. And what a shame. It looks like, with a different ending, this could have been a marvelous romance novel AND a better support for the differently abled.

  • Oh man, I’m talking to an author who writes about wounded war vets in romance. Some of my own characters have stuff going on, sometimes side-effects of fantastic powers, sometimes just deluded ideas about how to use things, a couple have Asperger’s Syndrome (something I myself have) and so on. Another idea is my characters start off Pretty and Awesome and… deteriorate. The more I read about the community of the disabled or disadvantaged being given the cultural appropriation treatment, the more it rankles my nerves. Yes, it’s good that this kind of thing is getting people talking about it. I don’t know how long it’s been a taboo to talk seriously about disability and sexuality, but Disabled Characters are always portrayed as non-sexual saints as a plot device to Live Happily.

    Load. Of. Shit.

    Yes, disabled people’s happiness is important, probably a lot more than most, but that’s not to say that able-bodied, able-minded people’s happiness is invalid. But the way that people treat happiness as an absolute, HEA as the only outcome that matters, Cult of Happy thing… that gets annoying. Seriously annoying. It annoys normal people. I’m not normal. Don’t demand that I smile. I will seriously anti-smile.

    Happiness is certainly a good thing… but don’t treat it like a drug.

  • June 2, 2016 at 3:49 PM // Reply

    I loved the book and will be discussing it in a book club this Sunday. I recognized the problematic things about the plot, outcome, etc. I am VERY disappointed to learn that she did really NO research. Funny my gut wondered but when Lou starts going online I assumed that as all a result of the author also having researched online, talking to people, etc. That she had also gone online and naturally would progress further to talking with people. Guess not.

    I absolutely understand the anger of being a plot device. That did not occur to me but in hindsight that was lazyness on my part, I kinda did know this. I did recognize it as Lou’s story not Wills. I did think it was controversial to play out Will sticking to his decision but within the story I wouldn’t have wanted him to do anything else, sounds harsh but it is the truth. So many conflicting thoughts.

    Hollywood does need to do a romance about a quadriplegic man and an able-bodied woman or two quadriplegic people, I don’t care what combination but I’d go see it. And I want a scene like this one: “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.”

    Given me so much to think about! I’ve shared this on our book clubs Facebook page. Half my book club is made up of aspiring writers so your words are important to us. It will an interesting discussion.

    So very grateful you shared.
    Thank You, Rose

    • Thank you for the kind words and well thought out response. I, too, loved this book until around page 300 when it takes a turn for the dark side.

      Again, even if there were more movies and books about quadriplegia and romance, this plot would have been more acceptable. It’s such a different story when just one of a bunch of romances has a tragic ending.

  • Thank you for writing this honest and thoughtful post. If you’re still looking for a romance in which a man who uses a wheelchair actually does “win” the able-bodied woman and “ride off into the sunset” I hope you’ll check out my Dakota Madison novel, Community Service. I did a tremendous amount of research to make this book as realistic as possible and interviewed a number of people who uses wheelchairs to learn more about their lives. I was fortunate that one of the men I interviewed was very willing to share information with me about sexuality and disability, which I wanted to portray in a realistic and positive light in my romance novel.

  • This is very true. I wish people would change how they think of disability. Just the phrases “confined to a wheelchair” or “bed bound” automatically are negative connotations. My son had SMA and unfortunately passed away just before he was to get his wheelchair. When he first moved himself with it, you could see the joy of the world opening up to him. He couldn’t wait to be independent. That wheelchair wasn’t going to be a confinement but rather his means to be independent and run around with his brother on his own. Yes he got frustrated that his body wouldn’t cooperate and do what he wanted it to, but he really learned to find what would help him just enough to do whatever it was then himself. He taught me so much. Just helping me see the people, not the disability. I don’t think of him as my disabled child he was just my goofball, typical kid.

  • Excellent observations. Thank you for sharing. I had not heard of this movie. It’s unfortunate this kind of thing gets so much visibility. If there were ample alternatives, maybe it would just be noise. But you are right. As things stand, it comes off as horribly irresponsible.

    I will only add that some of us try to do better. My series THE MINUS FACTION, for example, features veteran in a wheelchair, and his disability is neither a plot device nor the start of a descent into tragedy.

    Thanks again.

  • Thank you Steven for this post and thank you Chuck for sharing your forum. I’m glad you provided the spoilers because I had considered seeing the movie. However, I would have been appalled to find out in the theater that assisted suicide was presented as a heroic sacrifice, particularly without offsetting factors as you mentioned. I have a child who is not physically disabled but has considered suicide. We’re trying to teach finding and holding fast to the joys in life, though there are situations in which that may be extremely difficult indeed.

    • Tracy, every single person in a medically dependent situation has considered suicide, if even for a brief second. The thought wanders through your mind “is this all really worth it?” and the answer is absolutely yes. Life is always worth it. While there are extreme circumstances where having assisted suicide is considered, it’s usually for extreme chronic pain or 100% terminal illness. It is my sincere hope that no one ever commits assisted suicide as a self-sacrifice for others.

      We are humans. We must do what we do best, adapt.

  • Thank you, Steven, for sharing your perspective on this book/movie/issue!

    Last year I wrote and am now in the process of revising a YA novel about a paraplegic girl. I’m lucky enough to have an amazingly generous coworker and friend who allowed me to pick her brain for *hours* about her experience as a paraplegic. There is no way I could have come close to understanding my main character without the benefit of our talks and my friend’s raw honesty.

    For instance, in one scene my MC has a gotta-go-pee emergency…that is until my friend told me that one of the things she misses the most since her car accident in high school is that “ahhhhhhhhhh” feeling when you take a piss and relieve the pressure on your bladder…because she doesn’t feel that sensation any more! Wow. Talk about dodging a bullet-train trip to Idiotville, not to mention the hours-long layover in Offensive Town.

    I’ve also availed myself of the tons of great online resources, my favorite of which is Disability in Kidlit, in particular Christine McMahon’s review of Far From You by Tess Sharpe (http://disabilityinkidlit.com/2015/07/03/review-far-from-you-by-tess-sharpe/). These reviewers keep authors honest!

    The shadowy people known as “they” always admonish authors to “write what you know.” Sometimes it’s good, and necessary, to give that adage a meaty middle finger. In this case I clearly knew *nothing* and never would have been able to write this story, this character, with any sort of authenticity without admitting my ignorance and educating myself.

    Thank you, thank you, thank you!!!

    • Research is so important. Especially when you are trying to speak from the point of view of a real character. Movies today thousands and thousands of dollars for consultants to be onset to make sure that people are getting details of spies, doctors, war strategists, political hopefuls, so and so forth, absolutely right. But yet when a movie was made about someone with quadriplegia, conveniently no one was consulted or interviewed. What an opportunity lost.

      I look forward to your book!

  • Fantastic post Steven, thank you so much for your insight. I’m only sorry that you had to write it at all.

    I don’t understand why writers do that!! No research on something so critical to their novel?? It just boggles the mind and immediately sets off alarms for a reader.

    I had only just last night watched Emilia Clarke on Graham Norton Show – discussing the movie – it looked so sweet, though she did say ‘its full box of tissues sad’ – now that I know more about it I will be skipping it.

  • Steven. Thank you for the advice on strangers and private parts 🙂 And thank you for your insight. I hadn’t planned to see the movie, nor read the book. I’m disappointed that the writer would not have done the research that one might expect. I’m not a professional writer; part of the reason I’m not is the research/I don’t know where to start aspect and I want to be credible.

    You know how you hear “write the book you want to read”? Well…there you have it. Write the book you want to read. And, from a writer perspective, thanks for the reminder that we should do our homework. At least then, even if the outcome/story was the same, there might be a bit more credibility.

  • This was a great read, Steven! This is definitely inspiring for anyone influenced by literature. It sure hit home to me. I love writing about heroes, it’s what I live for. I like to pick from all sorts of crowds when choosing someone to be the hero of a story, and I’m disappointed in myself to say I’ve never concretely chosen a disabled individual as the center of my shortly-lived stories. Now, in my experience I’ve never come across such a story as Me Before You, but I’m somewhat disgruntled that there is such a story.

    I’m always on the hunt for something new, original, modern and relatable. You’ve put out the seeds for just that.

    This post has given insight to me to research something beautiful and intriguing. Storytelling could be spiced up significantly if writers everywhere heard what you have to say. It’s going to splice up my writing for sure, because I’m out to not make the mistake. I’m looking forward to seeing what I can do with your input.

    Thank you, Steven.

  • We all feel inadequate sometimes, and when it comes to sex it stings a thousand times more (I have a friend who’s got a problem with that). But suicide’s pretty final. Let’s not glamorize it by turning that into some grand romantic gesture.

  • Thank you so much for writing this. As someone with cerebral palsy, there is so much i want to say/rant about.. you put so much into words and so eloquently

  • Doesn’t the sum of a good novel need to contain some kernel of truth or inevitability? That was my problem with this book. It doesn’t give you that IMO. I felt manipulated and told what to believe, rather than coming to that conclusion on my own.

    This story pulled me in. I liked being in Lou’s head. She’s fun and quirky—as is her family—and the book started as nice escapism. Will’s character was interesting too, and I was on board and enjoying each page until we got to the beach. Lou bares her heart to be met with this attitude–yeah, you love me, but that’s just not enough. My life isn’t the way I want it to be so I would rather die. From a purely reader standpoint I thought that simply sucked. I get that Will was miserable at times, and I get that his long-term prognosis wasn’t good, but I couldn’t buy that someone who’d previously had such a zest for life wouldn’t want to stick around for every last moment. And the story did not convince me otherwise. Neither the dialogue or internal monologue supported either Will or Lou’s decisions from there on out.

    This book used both a quadriplegic and rape to forward the plot, but I thought it dropped the ball in delivering believability for the character’s actions. I didn’t like the ending, but I didn’t buy it either because the actions of the characters stopped being believable.

    From the beach on I was lead on a journey—from Lou changing her mind and heading for Switzerland—to the annoying cop-out ending. I detest when money and travel are used to make everything supposedly okay. Hey, the person you loved committed suicide, but have a scone in a Paris Café. We’re all good. It’s BS. I can only hope that quadriplegics will take it the same way as rape victims—a story with terrific potential that didn’t work if you really look at it.

    On the bright side maybe this book and the success of it will trigger a flood of these types of stories (which ALWAYS happens), and some of those will be both believable and life-affirming. *ahem* Steven? Don’t you have a book to write? (And thank you for speaking up!)

  • “Disability does not sideline or disqualify someone from living a full and active life. Everyone living with paralysis can live boldly.”

    I do live boldly, probably more boldly than I would have if I was able-bodied. Probably more boldly than many who aren’t afflicted with disability. I must, for if I didn’t, I’d lose my dignity. Still, the paralysis DOES keep me on the sidelines and DOES disqualify me from living a full and active life. Anyone saying it doesn’t doesn’t live in reality. I don’t have the big bank account Christopher Reeves had at his disposal. I don’t have transportation, so the possibility of meeting people, interacting with them, and being part of society isn’t as accessible for me. I’m at the mercy of others who are willing to give up time and a little money (like for gasoline for their vehicle). I am a prisoner in this life.

    Yes, suicide crosses my mind from time to time, but I’m one of those people who is fervidly curious about tomorrow. Therefore, the thought of ending it dwells in the back vaults of my mind but never sees the light of day.

    I think it’s sad that the main character just must be “good-looking”. Not everyone is, you know. Is there more sympathy for the protagonist that way? Pitiful if this is true. Is it only “the beautiful people” who are deserving of empathy and sympathy?

    • It is my deepest wish that you will always be fervently curious about tomorrow. Sure. Having a disability, like the main character of this book or some type of paralysis like you and I, precludes you from some activities. But that doesn’t mean we are done living. If your analogy about being a prisoner in life is true, may we be the inmates running the facility.

      Cheers

  • Thanks for this enlightening article. I like to read all sides. People are so dimensional. Suicide is real and the people do feel hopeless and want things better. Seriously. I haven’t read the book and would probably rent the movie. I believe they make movies to sell to a crowd. People in wheelchairs have moments of utter despair and feel sorry for themselves. We all do. I like it when one in the situation teaches us. That’s my philosophy; don’t get mad but teach us how it is. Thanks Stephen for your insights. Best.

  • Thank you for this excellent post. As someone with what is currently a fairly low level of disability (but which will/may degenerate as time goes on) but a fairly high level of pain, this is a subject that touches me more deeply than I like to admit. As an author it also reminds me of my responsibilities. I wasn’t intending to either read the book or see the film (not my kind of film/book, and I hate romance for starters) but it’ll be something I’ll know to actively avoid now.

  • Appreciate your thoughts and willingness to share them, Steven. It is so helpful to have a peek into your perspective. I am curious as to your take on a film like The Sessions? I very much liked the movie, and remember being struck by how it felt more like a tale about needing love/affection/intimacy and what that brings to a life, and less about a man being restricted by an iron lung. Would love to hear what you have to say about how that story compares to something like Me Before You.

    • I find it was a good movie and plot. It’s sort of implies someone in that situation would have to pay money to have sex, but I thought the writers did a good job of bringing them back around and saying “Well, actually it’s just paying for the first time. Eventually he will go on and find love without having to use a surrogate.”

      There are quite a few people with disabilities I know who use prostitutes. Now, that’s also because they gave up on finding love believing that someone who is severely disabled cannot find a stable relationship. Granted, it is harder as you have to find someone willing to accept your medical necessities, but it’s not impossible.

      I could literally write another 2000 word article on the subject but suffice it to say that it was a better love story. Those characters started having real emotions for each other and wanted the best for one another. At the very worst that inspired people in similar situations to seek paying money for sex, which is a far cry from the other movie that the worst-case scenario may lead someone to consider going to an assisted suicide facility.

      In my opinion, whether writing for film or a book it’s all about what impression you leave after the story. As a writer, I want to leave people with questions. Leaving you with “is it okay to pay for sex? what about if it’s teaching a life skill and not just about sex? I wonder what it’s like to have to get someone to teach me how to have sex despite a disease?” seems like a wonderful thought-provoking premise.

  • Hi Chuck and Steven,
    Thank you Steven for writing this post and getting folks to talk about this importan topic. As a person who is blind, I have also faced a lot of the stereotypes of a disabled person. I hate hate hate being told how inspirational I am!!! The way I see it is that everyone has a challenge of some sort or another that they must face to get through the day. Just because mine is a bit more visible doesn’t give anyone the right to act like I’m a hero. I just do the things I need to do, just like everyone else.

    • Being told that you are inspirational takes a bit of… getting used to. For years, I completely bucked against the system. I was told–as many young people who are disabled are–that I was inspirational and should speak to others in my situation, etc., etc., etc.

      That never sat well with me.

      It really wasn’t until the last six months or so that I realized I have enough life experience now to be inspirational based on what I know, who I have become, and not just because of a disease or illness that I possess. As you say, everyone has challenges, ours are just more obvious. I wanted to make damn sure that if I am inspirational it’s because I have something to offer.

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