Few films make me as upset as The Sea Inside. It has been years since the first time I saw the 2004 Alejandro Amenábar vehicle, which stars Javier Bardem, as a real-life disabled man named Ramón Sampedro, a Spanish man who believed it was better to be dead than disabled.
Rather than portraying disability in a way that would open up dialogue about why disabled people feel that way, and addressing the greater issue of how society views disability, the film is a testament as to why non-disabled people should pity the disabled community. This is especially true for those who are as disabled as Ramón Sampedro, and support his decision to end his life, even if his disability was not fatal, which it was not.
We look to film and television for how to treat others, how to understand others, and to learn about stories about people we don’t actually know. The majority of non-disabled people do not know someone with a visible disability. This is in spite of disability being the world’s largest minority community with numbers over 1 billion worldwide.
A lot of this is because disabled people have been kept away, out of public, essentially sequestered to the back bedroom, until the early to mid-20th century, when disabled activists started fighting for their rights to go to school, find employment, and anything else non-disabled counterparts were doing. If not stuck in the back bedroom, others were performing in freak shows, the objects of pity and awe…never of understanding or relatability. Still, other disabled people were institutionalized or locked away in other ways – kept out of the view of public. Out of sight, out of mind.
Around a century has passed, and society still doesn’t know how to deal with disabled people. Hollywood doesn’t know how to tell disabled stories, so it falls back upon tired tropes that often involve pity or awe. This trope is so common, many activists look out for it in any new forms of media that includes disability.
Even as the world becomes more tolerant of other differences, the pity narrative for disabled characters continues. The Sea Inside came out over a decade ago, and yet we still have not evolved enough beyond the harmful message embedded in this film.
Even as disabled activists fight to prove that our lives are worth living, assisted suicide has been discussed, and even approved, in states like California and countries like Canada. Such legislation puts disabled lives at risk, under the guise of letting terminally ill people die with dignity. Such films continue to uphold the narrative that disabled people deserve to be able to kill themselves, because being disabled is so awful. It doesn’t matter if the disabled person is dying. Suicide is still seen as a viable option, because people believe being disabled is a fate worse than death.
The latest film to take on the narrative that it is be better to be dead rather than disabled is a very disappointing film called Me Before You. It stars British television stars, Emilia Clarke and Jenna Coleman. Even more disappointing is the casting of The Hunger Games’ actor Sam Clafin, as a physically disabled man.
The trailer is filled with ableism, and many harmful disability stereotypes. Additionally, not only is the non-disabled actor cast as a cripple, he’s the worst kind of crip. He is pathetic, pity-inducing, and absolutely inaccurate to most disabled people’s reality. He makes you want to pity him and support him dying, “because it’s the right thing to do.”
The film is based on a romance novel by British romance writer, Jojo Moyes. If it is anything like her novel, then *******SPOILERS AHEAD******* we are looking at a film that sees a man with a disability who in spite of finding love, still kills himself, because life is not worth living if you have to live it in a wheelchair.
Edit: We have watched the film by this point and it is spot on to what the book portrays – so major harm to disabled people…
Of course, his disability is also a plot device for the true lead character, who actually benefits from his death. His disability and subsequent death because of it, allow her to go on living. She is able-bodied compared to him, so she is able to benefit because he leaves her the money she needs to have a successful life.
His death benefits her, and solves all her problems, so even if she loved him, it is better for her that he died.
You can see the trailer below:
The disability community is sick of seeing films where disabled people are misrepresented. Part of this is because we are not included, anywhere. We were not consulted for the script. A wheelchair user did not write the script. Even the main actor is a nondisabled actor, which prevents him from knowing how accurate his acting, how harmful his portrayal, and how inauthentic the script really are.
Without including the disabled voice, non-disabled Hollywood continues to make life harder for us, because this is all people see, and they assume it’s true.
I believe that if Hollywood showed more disabled actors, particularly wheelchair users, who we never see, and the stories were more reflective of the disabled experience, then people would believe disabled lives were worth living.
There is a huge difference between a debilitating illness, such as brain cancer, in the end stages, and a person with a disability who is not dying. There are lots of people with end-stage cancer who still don’t want to kill themselves – but they never see that narrative.
You can find success, love, fulfillment even if you happen to use a wheelchair. It is not the end of the world, and these films need to stop scaring people into thinking it is.
We cannot change the narrative about disability when these kinds of films continued to be made.
We cannot make better, accurate, disabled-inclusive films, so long as Hollywood is able to continue shutting us out. Often, performances in these kinds of movies are awarded by the institution, and disabled actors continue to struggle to find any type of meaningful work. If we are not even allowed to play disabled roles, who are we allowed to play? I only wish disabled perspectives were even considered, because until they are we will keep seeing films that continue to harm one of the most oppressed groups in the world. The disability community deserves better.
[…] episode was prompted by an article I read yesterday from a disability rights activist about an upcoming blockbuster movie based on a best selling romance novel which portrays disability […]
I read Me Before You (not knowing the ending) and up until the end I enjoyed it. I absolutely hated the ending, it’s horrific the way it’s handled. Jojo Moyes released a sequel (I think last year) about what happens next for the female character, Lou. It’s called After You. And the online book community I’m part of has been raving about both books. I’ve not read After You.
I tweeted that it seemed like I was the only one who hated Me Before You and wouldn’t be reading After You. Jojo Moyes saw that and was quite defensive about her ending in tweets to me and claimed many disabled people had told her it was good. I’d quite like to know who those disabled people were.
Yes she told me the same thing… I had little problems throughout, when I read the book. There were some really great ideas that never panned out. I agreed to the ending with the most horrific part. I thought that it was building up to something that could have been really amazing, and she never gave us a pay off at all.
Yes it is! I have spoken about the freedom that my chair represents publicly and privately. Particularly when people have encouraged me to walk with my sticks ( which are only therapeutic not practical).
Thank you for writing this piece. Given that I am relatively new to life in a wheelchair, I hadn’t previously paid much attention to the portrayal of disability in the media. What stands out to me now is that our community is not often represented in Hollywood productions, and when we are, it is wildly inaccurate.
Welcome to the community! 🙂 Toasters are not practical, so have a free tire pump! Yes, you are noticing a problem many of us have notice for a while. Representation is inaccurate and often harmful. We need to work together to change this.
Yes, I am totally tired of the representation of people with disability in cinema, and able bodies actors portraying people with disability. That is so degrading and must be changed. I am an actor, a paraplegic in a wheelchair and just finished directing course, hope to have enough stamina to break the spell.
I’m curious what in the trailer you specifically find “ableist.” Not because I disagree or have strong feelings about the film, but just wondering what you see as repeated tropes to be aware of as problematic. Nice piece — thank you!
[…] Hollywood, ever on trend, is releasing a man meets woman, man and woman fall in love, man kills himself because he is disabled and doing so is the ultimate act of selfless love, movie this summer. […]
Great post and much appreciated! I do want to point out that person-first language is one of the ways we can help shift the way our society thinks, so in the future you may want to consider using the term “people with disabilities” rather than “disabled people” – it may seem super minor but focusing on the fact that first and foremost they are people and making the disability secondary really does make a difference.
I actually used person first and identity first interchangeably to accommodate more people. I actually prefer identity first language when I am identifying myself. I am not alone. There are many disabled people who prefer identity first language. I am proud to be disabled, however I would never call anyone else that if they told me they did not prefer that.
Here is a really good article on identity first language and why it is preferred by many:
http://thebodyisnotanapology.com/magazine/i-am-disabled-on-identity-first-versus-people-first-language/
Thank you for your response!
[…] As Dominick Evans says in his take on the book and film: […]
[…] As Dominick Evans says in his take on the book and film: […]
I am always surprised when they do fill a role in a movie well..whether that be a strong female lead, non white roles, older sexy women, fat, those in a wheel chair, and so on. I was happy to see one of my favorite shows NCIS had a spin off NCIS New Orleans have a character that was in a wheelchair played by a person really in a wheel chair. Daryl Mitchell is a wonderful actor and I hope more roles open up for a diverse range of people.
Daryl is so amazing!!! He is a really great guy.
[…] As Dominick Evans says in his take on the book and film: […]
So — who in the disabled community is writing novels and screenplays? Maybe some of them should be — Or am I not allowed to say that, because I’m not (formally, government-recognized) disabled? The tone of the reviewer suggests I am not.
I never made a claim over who is or isn’t disabled, so please do not put words in my mouth. I don’t do that and anyone who knows me can verify that. I also do not classify disabilities…we all have challenges we face. Nobody is more disabled than anyone else. We simply cannot compare disabilities in that way. There are plenty of people writing stories, but whether the mainstream will pick anything up is still a problem. Most publishing houses don’t want to hear about disability from someone with a disability. The same is true in the film industry.
This man was in constant physical and subsequently emotional pain as a result of his disability. He went from being a person who traveled everywhere and led a very active lifestyle to being a quadriplegic. For HIM, death was a better option than being in pain and basically unable to move all day every day. The woman in the book contacts many other quadriplegics in an effort to help him, most of which say that they were able to find happiness again after their disability and would never choose to die. But if this man felt that death was a better option, that is his choice. He didn’t choose to die simply because he was disabled – he was in constant physical and emotional anguish. This book/movie is important because people in his situation deserve the right to die with dignity, and currently there are very few places in this world that allow it. This isn’t just simply about it being “better to be dead than disabled.” There are real people who go through this and would rather be dead than be unable to move anything but their head. There is nothing wrong with that. It’s a personal decision.
[…] and excluded. Director and fellow disability activist, Dominick Evans remarks in his own blog post: “We cannot make better, accurate, disabled-inclusive films, so long as Hollywood is able to […]
[…] Hollywood Promotes the Idea it is Better to Be Dead than Disabled, by Dominick Evans […]
[…] http://www.domevansofficial.com/2016/02/hollywood-promotes-the-idea-it-is-better-to-be-dead-than-disabl… […]
The book and the movie are written and designed to illicit strong feelings from the reader. That is what good stories do. A handsome, rich, adventurer becomes paralyzed and wants to die. In comes the sheltered, college student who decides it is her goal to make him change his mind. A potential romance, a feel good road to recovery, or a decision that even with the possibility of happiness life with a disability is still not worth living? The story had the potential to shed light on the recovery process of dealing with a disabling injury but falls short by deriving its plot points from ableist beliefs about life with a disability. The plot capitalizes on the societal assumption that life with a disability pales in comparison to life without one and is not worth the effort.
Readers and viewers argue that it is a story about choice and understanding a person’s right to choose his/her destiny and I do not disagree that everyone should have a choice, but it should be an informed choice. Unfortunately it t was not an informed choice to kill himself. It was the choice of a person so inundated with the stereotypes that life with a disability is not worth living, he cannot see beyond the negativity. The choice of the ableist attitudes that perpetuate the belief that life with a significant disability cannot be meaningful, full and incredible. It is the choice of ignorance. Of course he wanted to die because all he knows about disability comes from the negative societal messages that because he is now disabled his life lacks value and that he would be a drain on those around him. If you are continually subjected to that kind of negativity it is hard to move forward and choose life. This film simply reinforces the ingrained ideation the people with disabilities are better off dead than disabled. It was not HIS choice as many suggests but a choice influenced by previous representations like this one that make the idea of living with a disability unbearable.
I know firsthand this battle. When I broke my neck at 19, I wanted to die. I thought life as one of “them”, those disabled people, meant that I would never marry, have a family, a career, find happiness, or live fully. I did not even know I had stereotypes about people with disabilities. I thought I was an open minded individual who valued everyone. But waking up in that hospital and hearing I was paralyzed, a subconscious attitude and belief about disability permeated my perceptions and made me want to die. I felt that way for almost a year. Initially, I attempted passive suicide by refusing a blood transfusion, and 9 months later considered active suicide by overdose. Luckily I did not have people around me “respect” that choice or I would be dead. I had people who supported me. I was lucky to have role models who showed me life went on. I was lucky to be able to see through the bull crap that has been fed to us by a fearful ignorant belief about life with a disability and move forward to make an amazing life that I would never trade to walk again. He could’ve had a life that was bold, meaningful and full but instead he let ableism win. This ending simply perpetuates the very beliefs that lead him to make that choice. But it really was not his choice was it?
You don’t speak for all the disabled people only yourself, what right do you have above anyone else to judge what is right for another human being?
We can’t and we should never hide the possibilities of assisted suicide we should confront them, make them safe and make them accessible and normal for people who want to use those facilities. No human should tell another that they don’t have the right to end their own suffering be it emotional, mental or physical and you are doing exactly that here.
I never said I spoke for all disabled people. I do know many disabled people who are in agreement with me. I stand firm in the belief that there is no actual choice, not a fair choice, and not an educated choice, when disabled people remain unable to have access to the basic things they truly need to ‘live.’ It is not a choice when society still looks down on disabled people with hatred and disdain. Of course, people who are treated worse than scum are going to be upset and when society continually tells us we are a BURDEN and of course that would be the #1 reason disabled people kill themselves. When society starts treating disabled people like human beings, then we can actually talk about people having an actual choice in killing themselves.
[…] Dominick Evans: Hollywood Promotes the Idea It Is Better to be Dead Than Disabled […]
[…] (Oddly enough, real, live disabled people – or differently abled, as it were – don’t seem to share that opinion.) […]
[…] Hollywood Promotes the Idea It Is Better to Be Dead Than Disabled – Dominick has been perhaps the earliest and the loudest critic of the movie. He’s heavily involved in the intersection of disability and cinema, so no surprise he’s out in front. […]
[…] Examples include articles by disability studies scholar Bill Peace and activist and filmmaker Dominick Evans. Some have been featured in mainstream outlets like Emily Ladau’s article in Salon, Lauren […]
[…] include articles by disability studies scholar Bill Peace and activist and filmmaker Dominick Evans. Some have been featured in mainstream outlets like Emily Ladau’s article in […]
[…] this time, in response to a torrent of critiques by writers and activists, The Guardian, the Washington Post, People, Vanity Fair, Salon, BuzzFeed, […]
[…] this time, in response to a torrent of critiques by writers and activists, The Guardian, the Washington Post, People, Vanity Fair, Salon, BuzzFeed, […]
[…] this time, in response to a torrent of critiques by writers and activists, The Guardian, the Washington Post, People, Vanity Fair, Salon, BuzzFeed, […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian, the Washington Post, People, Vanity Fair, Salon, […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian, the Washington Post, People, Vanity Fair, Salon, […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian, the Washington Post, People, Vanity Fair, Salon, […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian, the Washington Post, People, Vanity Fair, Salon, […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian , the Washington Post , People , Vanity Fair , Salon , […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian , the Washington Post , People , Vanity Fair , Salon , […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian , the Washington Post , People , Vanity Fair , Salon […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian, the Washington Post, People, Vanity Fair, Salon, […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian, the Washington Post, People, Vanity Fair, Salon, […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian, the Washington Post, People, Vanity Fair, Salon, […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian, the Washington Post, People, Vanity Fair, Salon, […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian, the Washington Post, People, Vanity Fair, Salon, […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian, the Washington Post, People, Vanity Fair, Salon, […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian, the Washington Post, People, Vanity Fair, Salon, […]
[…] “Hollywood Promotes the Idea It Is Better To Be Dead Than Disabled.” Link. […]
[…] of the disabled community is concerned, it is another example of how Hollywood is close to one of story when it comes to people with disabilities – and it is not very […]
[…] disabled community are concerned, it’s another example of how Hollywood has virtually one story to tell when it comes to people with disabilities — and it isn’t a very realistic […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian, the Washington Post, People, Vanity Fair, Salon, […]
[…] this time — in response to a torrent of critiques by writers and activists — The Guardian, the Washington Post, People, Vanity Fair, Salon, […]
I agree with most of what Dominick has written, including his pointing out that changes in the laws to facilitate assisted suicide put disabled lives at risk, however, I do not fully understand this comment “There is a huge difference between a debilitating illness, such as brain cancer, in the end stages, and a person with a disability who is not dying. You can find success, love, fulfillment even if you happen to use a wheelchair. It is not the end of the world, and these films need to stop scaring people into thinking it is. We cannot change the narrative about disability when these kinds of films continued to be made.” My late wife died from a malignant primary brain tumour and I am in frequent contact with newly diagnosed people with this disease. I aim to encourage them to maintain realistic hope, that they might be the first to benefit from a new therapy, or that they can find love and support in their final days. The comment I have quoted from the revirew seems to me to be too nihilistic.
You make a good point. I was referring to the very end of life for someone who has something like brain cancer, often when people are not completely aware of their surroundings anymore, and you know that end is coming for certain. I think that before that point, you don’t know when death is going to come, so you should maintain hope. I did not mean to imply someone with brain cancer should not maintain hope. I was just referring to having those illnesses where there is a definitive sign the end is coming soon, which a lot of people seem to believe happens to those of us in wheelchairs, simply because we use a wheelchair. However, I think there is a huge difference between being disabled and being at the very end of your life, and knowing it is coming.
[…] such as brain cancer, late stage, and persons with disabilities who do not die”, wrote disability activist and filmmaker Dominic Evans on his blog. “You can find success, love, fulfillment happens even if you use a wheelchair. […]
[…] as brain cancer, in the end stages, and a person with a disability who is not dying,” wrote disability activist and filmmaker Dominick Evans on his blog. “You can find success, love, fulfilment even if you happen to use a wheelchair. […]
Look, go to the usual eBook sellers and download Rolling with the Punches if you want to find out what living with a disability is like, and you can have a laugh at the same time. It’s a very entertaining read and written by someone who has had a spinal injury since he was 3 and who definitely doesn’t subscribe to the ‘better off dead’ edict.
[…] Hollywood Promotes the Idea it is Better to be Dead than Disabled […]
[…] Hollywood Promotes the Idea It Is Better to be Dead Than Disabled – by Dominick Evans […]
[…] inspirational category are patently ableist and send dangerous messages about disability *cough, Me Before You, cough.* There are the mediocre ones that may be ‘about’ disability’ and created by […]
[…] if disability had been depicted in less harmful and stereotypical ways. The film began attracting criticism from disability advocates in February when the trailer raised concerns that the movie would portray disability as a terrible […]
[…] As Dominick Evans says in his take on the book and film: […]
[…] As Dominick Evans says in his take on the book and film, […]
[…] I know that some people do feel the way Will feels in the book but it was a mean to an end which isn’t acceptable especially when written by an able-bodied woman. I am not the best person to talk about this because I didn’t recognize the problems when I first read the book but for more in depth reviews from people who actually know what they are talking about, here are some links: (1) – (2) – (3) […]
Hollywood, a product of large pop-culture media, absolutely needs to be held to certain moral standards in order for the good of the culture. Although I believe in freedom of speech and the right to express almost anything, media, beyond being made well, should also be inspiring, truthful, and maintain the dignity of the human person. I agree with the author that the movie appears to express the idea that being disabled is not a life worth living and I believe that is a shame because all life is inherently good. A person with disabilities is still a human that is good and deserves to be loved and feel loved. Media can do good and beautiful things. I recently saw a movie called “Becoming Bulletproof”. This is a documentary of a movie production team that hires disabled actors and helps them reach their dreams and full potential as actors. The movie restored my hope in humanity, helped me experience a different viewpoint of those with disabilities, inspired me to view those different than me with charity, and was also made well and was easy to watch. Media is a blessing, and can lead humanity to goodness, truth, and beauty. Hollywood needs to be more sensitive to the messages they send to its audience.
What I’d like is for the next actor or actress (able-bodied and neurotypical)
to pull a Marlon Brando act (if they do happen to win an award or a few of them). Reject any award on behalf of the disabled community. What’s good enough on behalf of racism, sexism or homophobia is good enough for us. Tear all walls of discrimination down now!
[…] article was originally written and posted by Dom Evans on their website on February 11, […]