Nicholas Sparks and John Green have each had popular romance novels (often referred to as “sick lit”) that end in tragedy. These novels were eventually adapted into successful films. A Walk to Remember and The Fault in Our Stars held their own against behemoths Ali and 22 Jump Street at the box office. These films have proven that people enjoy a “sick love story” (a tag line by TFiOS marketing team that received major backlash, and rightfully so) ending in sadness. In both cases the main characters had terminal cancer and in both cases passed away, leaving a trace on every reader and viewer’s heart. But what if the character chooses to end his or her life because of pain? Some may call the decision to end their life (referred to as assisted suicide or death with dignity) selfish, a decision all their own. Some may argue that these characters, based on very real situations, were in too much pain to live and had very little choice.
That’s what I initially took Me Before You a novel from author Jojo Moyes to be about; a beautiful look at a tough decision some are faced with, but something we as the general population don’t often talk about. I eagerly tweeted my approval of the novel when a man named Dominick Evans tweeted me with a different perspective.
Dominick noted how this story, at its core, will reinforce the notion that to be differently abled is simply not worth it. That the story informs the abled bodied (a.k.a. the majority) something they already believe; to be disabled is not a life worth living.
I believe stories are complex and often interpreted in many different ways, ways even the best authors cannot conceptualize while writing. While I personally enjoyed the novel, I can’t help but view it from a different perspective after my discussion with Mr.Evans. It’s very possible to love and respect something but also scrutinize and critique it. You don’t have to agree with someone (although I do agree with Mr.Evans) to respect and hear them out. The intention of the following interview is not to discourage your reading or viewing pleasure (the novel has been adapted into a feature film starring Sam Claflin and Emilia Clarke), but to simply see it with a different set of eyes.
Could you give our readers some information about yourself? I understand you’re a film director, correct?
My name is Dominick and I’m in my mid-30s. I have my BFA in film, and when I was studying I focused on production from a directing aspect, as well as learning about, understanding, and dissecting portrayals of disability and other marginalized identities in film. This has been a tenant of my career as both an aspiring filmmaker and an activist. I’m not only disabled, I am also a trans man, and part of my interest stems from the fact that I have yet to see anyone who resembles myself on television. Beyond film, I have been with my girlfriend for 13 years, and we have a son who is grown. We live in New York, about an hour and a half outside the city, in the Hudson Valley. I also work as a Media & Entertainment Advocate for the Center for Disability Rights here in New York.
Me Before You is set in modern day England the premise centers around a young woman named Louisa who is hired to work for a man named Will. He’s been quadriplegic for two years and she’s been charged with the task of cheering him up so to speak. Lifting his spirits and the like. As to be expected, this is a love story. Most people won’t see past that and will think that is the takeaway, the hope is that our discussion/ interview will allow them to receive what they’re watching with a new set of eyes (like you did for me).
That is the interesting thing. I really struggle to see this as a love story. They are advertising it like it is going to be this great romance, and love conquers all, when really the message is quite different. Louisa and Will are only in each other’s lives for six months, and much of that time Will is sullen, withdrawn, and sometimes verbally abusive to Louisa. She is always cheerful as she attempts to take on the role of non-disabled savior in his life. However, they only have a few moments of true romance. The first time she actually kisses him, he tells her to stop, because love is not enough. Death is better. There is absolutely nothing romantic about that.
How did you hear about Me Before You and what were your initial thoughts upon completion?
I heard about the movie when I was sent a link for the trailer back in February. Watching the trailer made me really upset, because I was able to quickly figure out that he was going to kill himself. The way he spoke about disability was really ableist. The way Sam “acts” disabled relies on physical stereotyping of disability. There were so many reasons I was upset by the trailer. I started researching the book, and ended up reading it. I can read almost anything, and I soak it all up like a sponge. However, I really struggled to get through the book. The sequel, which also contains a lot of ableist thoughts and ideas was even worse. After reading the book, I wrote a blog post that gained a lot of popularity at the time. I also reached out to Jojo Moyes the author and screenwriter on Twitter. When I did so it was pretty horrible, because even though I was very respectful in what I was saying a lot of her fans jumped on me and were very rude and hateful to me. It got so bad that Jojo herself ended up apologizing for them. She asked to speak to me in DM and I shared my concerns with her for about twenty minutes, when we went back and forth discussing the book and the overall storyline.
I was really disappointed when Jojo was confronted by activities at the UK premiere last week, because she told them this was the first time anyone had told her such grievances. She was unaware that I am friends with many of the protesters, and these comments were caught on a video recorded by Channel 4 in the UK. When a lot of my friends and fellow activists saw her downright lying, because they remembered my conversation with her back in February, people made me aware of her comments, and we all started calling her out for the lie. It is especially frustrating because when we spoke she said that she heard our concerns and was noting them for future projects. How can anyone believe that, when she won’t even be honest about the fact that we had a conversation in the first place?
I was horrified when I read the book…there is so much ableism not only for Will, but for Louisa’s elderly grandfather, who is infantilized and disregarded. The sad part is that there are a few moments with real potential, however those moments dissipate quickly as the book returns to tired tropes and overused caricatures. There is also a lot of sexism, with Louisa actually being saved by Will. Though Will struggles to see himself as a real person, let alone a real man, even as a “broken” man he is still capable of trying to save the woman. Throughout the entire story, it is all about Will changing and molding Louisa into a better person, instead of accepting her for the person she is. Through Will’s guidance Louisa is encouraged to #LiveBoldly, while Will is not even expected to live at all.
I was also very disappointed when the actors and writer said the movie would be much like the book, and activists who have seen the film say it is pretty similar. The book builds up to a romance that never actually happens… The climax fizzles, and you are left with nothing.
In the end Will chooses to end his life via assisted suicide. I personally was content with this ending as I thought it destigmitized death with dignity for people in tremendous pain and perhaps that is other people’s thinking – but you reminded me that it also stigmatizes people with disabilities. What kind of implications does the ending give the general public who, most of which are able bodied?
We see this time and time again in film. Disabled characters are expected to die, and in the earlier days of cinema it would make audiences feel better as long as disabled characters were killed. We have seen this in other marginalized communities, as well. For a long time (and even today we’ve seen this especially with lesbian characters) LGBT characters have also been killed off, under the guise that it made audiences feel more comfortable. What it really does is show our discomfort as a society with disabled people or LGBT people to the point where we are literally thrown away metaphorically through these deaths. Assisted suicide is one of the main ways disabled people end up dead in the movies. We saw this with Million Dollar Baby, The Sea Inside, Whose Life is it Anyway, and the list goes on.
What we are not seeing are stories that counter this narrative. In the book, the only other disabled characters, excluding Louisa’s grandfather who is basically seen as a burden on the family and completely dependent on them, are a group of NPC characters on a message board that Louisa frequents to try and help convince Will that life is worth living. These are pretty much nameless, faceless individuals, and I was told they were removed from the movie. I don’t know if that is true, but if so, then they were not even seen as important enough to be included in the story.
This story gives the audience the idea that assisted suicide is a legitimate choice for disabled people. However, many of us with disabilities do not see it as a choice. If you are treated really horribly, and your only other option is death, I know a lot of people who would choose death if it did not look like things would ever get better. Of course, many disabled people have every reason to be miserable. Our unemployment rate is around 80%. Most disabled people live in poverty. There are disincentives that prevent many of us from working and getting paid enough to survive if we want to have access to things like insurance, which we need to survive. Society treats us like we are less than. There are different forms of stigma depending on if your disability is visible or invisible, or if you have a chronic health condition. However, all of these forms of oppression are very dangerous and harmful. All of them support the idea that disabled lives are less valuable, and that disabled people have less to offer. Many disabled people struggle just to have their basic needs met. A great example is my own situation… I’ve been fighting to get a new wheelchair for three years, and in the last eight months I’ve been trapped in my home, with no wheelchair that works. I can’t walk at all, so why is it so hard for insurance to help me get the wheelchair I need to be independent? I’m very lucky that I’m able to work from home, and have a good job. Most disabled people are not that lucky. Most of them remain unemployed, because it’s hard enough to utilize insurance when we have it, so doing anything to compromise that can be the difference between life and death for many of us.
Considering all of these things, I don’t think a disabled person can make a fair and accurate choice, because we are already facing a huge amount of discrimination, lack of acceptance, and even downright hatred for existing. Until society changes the way it treats people with disabilities, and looks at disability in general in a more positive way, there is no way this could ever be a fair choice.
You also brought up pain, which is often touted as a central reason why disabled people may want to kill themselves. However, thanks to states like Oregon where assisted suicide is legal, we know for a fact that this is not the primary reason people are actually seeking out assisted suicide. In most instances, people with disabilities are killing themselves because they see themselves as a burden to their family and friends. Can you imagine if we spent as much time and effort making it so disabled people did not feel like they were a burden, or if we spent as much time finding a solution to chronic pain? Why are we not working on giving disabled people better access to things like medical marijuana, water therapy, and other treatment options or medications that may help to alleviate chronic pain and other problematic symptoms that can affect disabled people? Why is assisted suicide considered a go to solution for dealing with chronic pain in the first place? I know it doesn’t help that we treat people with chronic pain like they are drug addicts or heroin users, of course I wonder why are we treating drug addicts so horrible in the first place?
You and I also briefly discussed how in real life, if Will had all the assistance surrounding him and watching him, anxiety and depression would be one of the initial things to be worked on after/with his physical health. Why is it do you think this part was not in the story?
Honestly? I believe this is not discussed because the author does not understand the issue well enough. A lot of people criticizing us keep saying we need to consider another point of view, and none of us have walked in the shoes of the characters. What they are forgetting is that a non-disabled person wrote this story. A non-disabled person directed this film. A non-disabled actor portrayed the disabled role. Why are they allowed to speak for the disability community through this character, but those of us who actually lived the experience are considered unknowledgeable? For all intents and purposes, minus the being rich part (and I’m definitely not that handsome), I am pretty much the personification of Will. I have the same level of care needs. I need help with everything including dressing, toileting, eating, getting in my wheelchair, etc. I have dealt with chronic pain for many years. I can’t control my body temperature, and have problems because of that. I’m also prone to respiratory illnesses, which are exacerbated by the fact that I am also asthmatic. My girlfriend is very much like Louisa, at least on the outside. She was a waitress who eventually became my personal care attendant, although we were dating before that happened, which is different from the book where she is his carer first. It just worked out for us that she is the best carer for me, and we like the way our relationship works. We are far more like these characters than those who created them, and from our place, the horrible stereotyping, the sexism and ableism all send a horrible message about people with disabilities, and the relationships they are allowed to have, if they are allowed to have a relationship at all.
The disability community is really worried about what this is going to say to a newly disabled person. No one is disputing how vulnerable it can be to go from being able to move physically and suddenly being disabled. It is a huge transition, and that is why a lot of rehabilitation centers look for anxiety and depression, because those things need to be treated. If a person is non-disabled and they are suicidal, we do everything in our power to give them a reason to want to live. Why are we not seeing the same level of care and concern for disabled people? Why is it just accepted without question that disabled people should be allowed to kill themselves, and why is there this default belief that disability = suffering? We deserve just as much right to suicide prevention as any other person.
When I was 19 years old because of years of systemic abuse and oppression which I endured from my family, my school, and my community as a disabled person, and as an LGBT person, I tried to kill myself. I am so grateful today that I did not make it through the process. I hear this over and over from my disabled friends who have tried to kill themselves. Many of us become depressed because of how we are treated by society, especially when it is our families, and other loved ones. That depression needs to be treated, and disabled people are not receiving that kind of care. Part of this is because society just accepts and expects us to be depressed. We are supposed to feel like we are suffering, and that’s why assisted suicide is accepted. We do not receive equal access to suicide prevention, and that desperately needs to change, because so many of us with disabilities do want to live. Some of us just don’t know how, and need the extra help to figure it out.
You mentioned to me that in the novel there wasn’t a single quadrapalegic that Will talked to, so he was extremely isolated. There were nameless online people that Lou spoke to in chat rooms but that wasn’t in the film. Why is this important to note the absence of other differently abled people in the story?
This is why a lot of rehabilitation centers connect newly disabled individuals with someone who has made the transition, and is living their life with a disability. Living is really the key word. We can live with a disability, especially with the right supports in place. However, newly disabled people don’t know or understand this, and if the only media they see are movies where disabled people are killing themselves, they may start to believe that this is the logical trajectory their own life is going to take. My friends with spinal cord injuries have told me it has taken them up to five years to adjust. It takes time, and Will was only given two years. He had no other quadriplegic friends to talk to, and he completely isolated himself in the annex of his parents’ home. Isolation is not good for anyone. If you never see another person like yourself on television or even in real life, and you never see them have a successful and fulfilling life, then what are you going to think the outcome of your life is going to be?
I would venture to say the average American knows not much of what it is to have a physical handicap let alone be quadrapalegic. For many, this is their first time reading/seeing a film starring a character like Will. Is it better if people have no knowledge of quadriplegia or have but one character to reference in their memory banks?
It is better that people understand that any disabled person is still a human being. We still have needs and wants like any other human. We are capable of having jobs. We are capable of having families. We are capable of having healthy and fulfilling sexual relationships. People don’t have this frame of reference, because it’s not anywhere in film or television, so I think it is much worse to have this as the one portrayal that people see about disability. What a lot of people do not realize is that we look to the media to understand the things we have no experience with, so how disabled people, or any other marginalized person, is treated in the media has a direct correlation with how actually disabled people are treated. I am constantly told by people that fiction should have no bearing on real life. I completely agree with that… it shouldn’t, but that is not real life. It does have a bearing on how we are treated, so filmmakers need to be very responsible about how they show disability. These portrayals affect everything from how we are treated to the kind of legislation that gets passed into law that affects us. Why is anyone going to support legislation for a group of people that want to kill themselves? If killing ourselves is the only example the media presents of life with a disability, even the people making our laws, and their perception of disability, are affected by this. Depictions matter. That is why we are fighting so hard to change the message about this film, and educate the public about why Me Before You is so dangerous.
Sometimes (well, more like all the time) we are distracted by our initial reactions to books and movies and don’t delve in deep as to the messages behind what we’ve read/watched. Guilty as charged. I still like parts of the novel and really enjoyed the film but I think it’s not only entirely possible but important to look at things with a critical eye, especially the things we love.
Was there anything Ms.Moyes the author really nailed in describing?
I think that she did a good job of making it clear in a few different areas, such as the race track experience, that the world is not designed for disabled people. This is another reason why disabled people become frustrated. Accessibility helps everyone, not just disabled people. For example, ramps and elevators help parents with strollers, young children, people who are injured, older Americans, and on and on. In spite of the fact that accessibility is really great for everyone, our world remains largely inaccessible to most disabled people. That is the one area I think she actually addresses in a few different scenes. Unfortunately, a lot of this was wrapped around huge amounts of ableism.
I also think her emphasis on these incidences is also different than the perspective of a disabled person. For example, those of us with disabilities deal with the frustration of a non-accessible world all the time. Disabled people are used to it. For the non-disabled audience, this scene is a huge deal, but for someone like me, this is just another Saturday night. This is no big deal. My wheelchair has gotten stuck before, and you don’t have any time to worry about whether it is undignified or not or whether you are facing indignity by needing help, because you are so focused on troubleshooting how to get yourself out of the mud or whatever you happen to be stuck in. For this reason, even though the scene clearly shows the world is inaccessible, the way the situation is handled by the characters makes it very clear the story is written by someone not actually disabled, at all. In general, I usually find that most films about disability that are written by non-disabled people don’t actually show disability accurately, they show what not disabled people think having a disability is like.
Is there anything you want to set the record straight in regards to how Will was described? I know not everyone is the same but was there anything you found vehemently incorrect?
In the book, when Will stops Louisa from kissing him, he gives her a series of reasons he wants to kill himself. Those reasons are:
1. He can’t have sex with Louisa the way he wants to… trust me there are many many ways to have sex, and disabled people figure out how to do it. I have a friend from college who is a quadriplegic, and he was was legendary with the ladies both disabled and non-disabled!! He was one of the first people that made me see just because I’m disabled that doesn’t mean I can’t have a really great relationship with any partner, and my disability does not have to limit that in any way.
2. He cannot do super physical sports. There is a sport that is called murderball, which is also known as Quad rugby. Some of the most athletic people I know are quadriplegics and paraplegics. He tells this to Louisa after she has already told him that she has found a place where he can do action sports. I know many disabled people who have done everything from skydiving to scuba diving. Extreme sports are possible, even with disability.
3. His job. Will was a banker. There is absolutely no reason he cannot be a banker in a wheelchair. I have friends that are in finance, who are doctors, and who are lawyers, and some of them have even greater care needs than Will. If I remember correctly, he quits his job, because he is uncomfortable with people seeing him in his wheelchair.
4. His wheelchair defines him. This may be true… and this is an attitude some people have, but it doesn’t have to, and I am of the firm belief that if we treated disability better in the media and in society, more people with disabilities would realize that life does not end when you become disabled. Really, we are just beginning a new adventure, where we learn really important life skills like time management and critical thinking skills from having to adapt to a world that is not made for us.
I worry about the book and now the movie…. and that people will think that Will’s situation is how it is for every disabled person.
Will you be seeing the movie?
Yes, when I can get it from Netflix or watch it on television without having to pay for it.
How do we improve things in publishing and or Hollywood so we don’t get stories that are (not sure how you would phrase it… underdeveloped?) as this?
We need to start including the voices and stories of disabled writers. We need to be included in the discussion, in the casting, and in the making of these movies and television shows. We need to have disabled people playing characters, not just in movies about disability, but in movies where they just happen to be disabled, but that is not a central part of their character. Right now, non-disabled people are telling all our stories without us, and that is not okay. We have our own voices, and they deserve to be heard. We have a lot to say. Now people just have to be ready to listen.
I would like to say thank you so much to Mr.Evans for sharing his insight and perspective. You can find more about Mr.Evans on his website.