Hey “Special Needs Parents”! Where’s the Outrage over “Me Before You”?

There has been outcry from the disability community over the new movie, "Me Before You." Conspicuously absent have been the voices of parents of children with disabilities. This post is for them.

There’s a new movie in town, “Me Before You.” It’s a love story – with a twist of an ending! The caregiver helps her boyfriend kill himself! Here’s a clip:

There have been a lot of posts in the disability community (see end of this post for some links) over this particular new gem of a flick, but I haven’t seen one from a parent of a child with a disability, a “special needs parent” as many like to call themselves.

And I kind of wonder… why?

Termination

Termination rates for fetus’ with Down syndrome are high. There is a constant battle within the Down syndrome community to try and combat that. According to personal beliefs, the battle is usually waged through outright campaigning to make abortion illegal, or through the pro-information movement. That is, to make accurate information regarding Down syndrome readily available to parents who receive a diagnosis.

The plethora of blogs by parents of children with Down syndrome is truly astonishing. So many parents, perhaps once on the fence about disability, are firmly in the pro-Down syndrome camp once they have, know and love their child with Down syndrome. They want the world to know what having a child with Down syndrome is really like; they want to change the climate of understanding and acceptance surrounding disability in general, Down syndrome in particular.

What does this have to do with the movie?

This movie fundamentally perpetuates the idea that people with disabilities want to die. That death is better than life if you have a disability. Get it now? Right. So, if you have a child with a disability and you have been trying to help the world understand Down syndrome or the disability that your child has, this is actually right up your ally. This movie is the type of movie that creates popular cultural myths that if you have a disability, you really are better off dead.

And so, if you have just received a pre-natal diagnosis of a disability, wouldn’t you, after being steeped in this kind of popular myth, be way more inclined to terminate your child? Because don’t people with disabilities really just want to be dead?

Call the bullshit

Parents, you have so much power. You are shaping culture as we know it, you are movers, shakers, drivers and part of the foundation within the disability community. We want you to see the truth in this type of movie, and call the bullshit. Speak up about it: your voice is also crucial.

Talk about the points:

  • People with disabilities enjoy their life. Just like everyone without a disability doesn’t necessarily adore every single little component to their life, people with disabilities may or may not love everything, but overall? We love life. We don’t want to die. We like hanging out here on this earth, even if someone has to wipe our ass or feed us.
  • Narratives need to change. This movie wasn’t written by a quadriplegic . The actor playing the quadriplegic guy wasn’t even disabled (Crippled Scholar said, “Now I’m sure this casting decision was made because after an exhaustive casting search, the producers could find no self-respecting quadriplegic actor willing to be associated with this bullshit and nothing whatsoever to do with the fact that they definitely didn’t even look at quadriplegic actors“).

Try and replace race here and see how offensive it is – a book/movie duo about the an African American experience that features… a white author, director and actors in blackface. Doesn’t sit so well, does it? It shouldn’t. It’s total bullshit.

  • EVEN IF someone became disabled through an accident (as actually happens to thousands of people daily), there is an arc of adjusting and recovery. You don’t just go, “oh yeah, man, you want to die because you can’t have sex anymore, and that’s totally legit, so here, let me help you die.” I mean…? Really? 

Life can drastically change and it doesn’t have to be an end to everything, just because you need to learn some new skills (or how to have sex in a different way). Quit making a fucking drama out of it. What you can’t wrap your head around doesn’t mean isn’t there.

Create the Culture You Want

Whether or not we create consciously, we make our culture.

Our Facebook statuses, tweets, the images we post, the content we read, share, expose ourselves to – it all affects this thing called “culture.” You fight hard for your kid – you spend hours with IEP’s, you work with your kid and their IPE. You battle the “r-word”, you go to bat for Able Accounts, for IDEA and for hundreds of other things that will fundamentally affect the life of your child.

Well, this will, too.

People watch this kind of movie, and that idea that a disabled life isn’t worth living is sinking in. Please: join the disabled community in combating this. Call the bullshit. Change the narrative. Talk about the points. Change the culture.

 

Links to Look at:

Why Are You Even Complaining? Some People Feel That Way, by Crippled Scholar

Hollywood Promotes the Idea it is Better to Be Dead than Disabled, by Dominick Evans

Spare me, “Me Before You”: Hollywood’s new tearjerker is built on tired and damaging disability stereotypes, by Emily Ladau

Why does Hollywood keep doing this to the disability community? The Daily (Video, only YouTube crap-captions available)

29 Comments

  • I wish I were a well known writer, or even had one of those parenting blogs that 1,000 people subscribe to and the parent chronicles their entire child’s life, because that is a thing, apparently.

    But I don’t. I have distanced myself from other “special needs parents”, out of necessity, because the majority of them see themselves as victims and they like to play the one-up you contest where they want to be the one who has it harder than you, and they’re going to point it out constantly. (I probably didn’t need to say all that. lol)

    I have seen so many people writing about this movie that I didn’t feel the need, frankly, but maybe the majority of those posts are mostly read within the disability rights community, and aren’t necessarily seen in the mainstream press. Emily Ladau gets her stuff in the Huffington post quite often, it seems, but other than that I don’t see much from the disability rights community in the mainstream. (I realize I’m preaching to the choir here)

    One of my stories did get picked up by at least one parenting website, and soon to be another, bigger one, or so I’ve heard.

    It’s not that I don’t have plenty to say on this subject – I do. I’m just not sure anyone will read it who isn’t related to me. lol But I guess I won’t know until I write it, right?

    You can find a few of my pieces on my Medium page.

    Thanks for posting this. You’ve inspired me to write something (even if I don’t have a big audience, etc)

    • I think you SHOULD write it. Even if none of us have huge audiences, we have the ability to impact at least one person, and that can make a huge difference.
      Also – the more you write and reach out and get published, the easier it gets. Huffington Post is a breeze once you finally crack the door (but once you do, you realize that they only actually promote famous or well-established people; it’s up to you to promote your own pieces if you aren’t famous, so there’s that…). I look forward to reading what you have to say.

  • Have you actually read the book? Nowhere in that book does it say that people with disabilities want to die. Also his caregiver did not help him die. He couldn’t face his life in pain, not being able to move and a prognosis of it will only.get worse. He wanted a choice as he had no choice about his accident or the life he lived afterwards. Why should there be an outcry by parents of disabled children they are precious loved and members of society. To use a film to suggest otherwise is pathetic.

    • How about parents of children with paralysis? Or immobilised children? Or children with no limbs?
      Should those children be euthanised, perhaps inutero where is more legal/acceptable, to spare their life of suffering?
      Just watched the trailer… he had reasons to live, including a budding romance with a beautiful woman who adored him, and family who considered him a precious loved member of society. Only severe depression would make him want to end it… why let depression win out? The depression is what needed treatment… not allowing him to succumb to it.

      • EXACTLY. But so often, everyone just sees the changed life, the disability, right, and think, “oh well….”. But EXACTLY. It was the depression that really needed treatment.

    • Not really sure what you are getting at here, Vicky – your last couple of sentences didn’t make a lot of sense to me.

  • Love this article, just a bit uncomfortable with the comparison to blackface. (And I’m pretty sure in the 1920s there were movies about black characters where everyone on the credits were white and done in blackface.) The black disabled community has expressed discomfort with this comparison before. (Srry don’t mean to be negative this is an otherwise great piece.)

    • Thanks, Savannah. I simply can’t come up with another example to clearly show how wrong it is to have a book/movie duo with no input whatsoever from the disabled. When I can, I’ll use that – and would certainly appreciate any examples you can give me. Thank you for your comment

  • We’re right where you are…perhaps the author needs to draw near to allies in the “parent” community to know what they’re posting. And so where were people with disabilities all the years I fought with schools for my son’s right to be educated alongside his non disabled peers in school? Where were you when the “system” assumed him to belong in segregated work places after high school? Where was the disability community when we testified at the statehouse in favor of implementing Olmstead in the DD community? A handful at best! Come alongside parents who are spending a lifetime coming alongside you!

    • Hi Sue,
      I’m actually a person with a disability AND a parent of a child with a disability (different from my own – I’m deaf; she has Down syndrome). I’m thrilled that evidently there are parents right there with the disability community – YES! I simply haven’t seen anything yet in my own feeds.
      And the power of the parent community is exactly what I was talking about in the post: I know how much parents do. Thank you.

  • Yes we have protested this. You can’t know what ALL parents across the US are doing. We are here

    • And I’m glad to know that. I just haven’t personally seen anything. But i’m glad you are there. Thanks

  • It’s about a man that lived a fulling functioning life before an accident left him paralyzed. Why compare one man’s life with the lives of so many others? I don’t get where the outrage is suppose to be. I mean, I read where they say it should be, but I don’t think taking this man’s life to represent the special needs community is appropriate. At least, not in this case. Does the author have anger issues? Am I missing something?

    • Within the current societal climate, it only reinforces the idea that disabled people should want to die or otherwise shouldn’t live. Many people with both acquired and congenital disabilities reject that line of thinking. It’s not because this isn’t something a disabled person could conceivably do or want to do. It’s because it’s a major, visible representation that, well, isn’t helpful or entirely accurate. People WILL map this to the disabled community and probably (at least subconsciously) use this to reinforce “better dead than disabled” beliefs, and it’s very likely this could trigger bad thoughts and feelings in disabled people vulnerable to this topic and possibly even people around that disabled people. It’s the same sort of mechanism as “copycat murders” where a filicide of a disabled child makes the news and another parent does the same because the coverage normalizes it.

  • At no point in watching this trailer did I think, oh this must be how the whole disabled community feels. Because it’s not about that, it’s about a man who before an accident lived a full and happy life. Afterwards he was unhappy and felt like he could no longer live a full life or do anything of meaning. People kill themselves or become suicidal all the time because of many reasons, Hollywood isn’t trying to say that if you’re disabled that you should want to die. They’re saying that this is reality for some people. That even though there are people around you that love and support you, sometimes things happen in your life and you just feel like it’s your time to move on. Are you telling me if the kids in The Fault in Our Stars killed themselves you would say because Hollywood or the Author wanted to make it look like all cancer patients wanted to die? This movie isn’t about a disabled man committing suicide, it’s about how the circumstances of your life can change and how you choose to deal with it.

    • maybe that’s how you yourself perceive it, but not everyone sees it that way.

  • Yes! I’ve been thinking about how we can change our messaging and the narrative to address this offensive pro death for those w disabilities/illness/pain in all its latest iterations. Thank you for the ideas and the push!

  • I completely agree! My daughter was diagnosed with a lethal (out of the womb) birth defect…… Which I found multiple survivors of, in Japan. When I showed doctors peer-reviews articles of studies with survivors, they laughed at me and told me I was tenancious. Our children are being denied medical care due to people who don’t have disabilities, assuming their lives are meaningless. Look at how futility laws are practiced — research Annie Farlow in Canada and Simon Crosier in Missouri. Our babies are dying, because people believe they are better off dead.

    We have to be more vocal about how we phrase this termination for medical reasons argument. I alway approach it from a euthanasia and discrimination standpoint. The arguments there are flawless and well researched.

    I would love to be involved with anything you do, if you move forward with this concept.

    • Thank you. I truly appreciate your reaching out, and if you have any ideas on how to collaborate, I’m all for it. I welcome guest posts as well , if you’d like to publish on this site.

  • My 31 year old son has DS. That being said was this male character in the fictional story … What is his “problem?” Is he dying from cancer? Does he have only weeks to live?
    Please don’t start crap that doesn’t need to be started. Don’t you think we have enough negativity in the world nowadays?? Enough mean and snide remarks??
    And that’s my two cents worth.

  • What the hell?? Have you even looked at the book? The book doesn’t in any way state that people with disabilities prefer death over living in their condition. The book is about a single person who had a very, VERY, large life who suffered from an accident that took that away from him. This is one person, one fictional person, with his own opinion. That doesn’t even reflect the authors opinion. And saying that “the caregiver helps him kill himself!” Makes the caregiver like a murderer! She was against it, and the whole book is about changing his mind, showing him he has something to live for. It ultimately doesn’t work. And there are disabled people who feel like dying is better than living with their limitations. The movie hasn’t even come out yet and there’s already this kind of crap circling the net? Bullshit.

    • In individualizing the film and book you skillfully ignore the fact people with a disability are a distinct minority group. The rights of people with a disability are protected by the Americans with Disability Act. This is civil rights legislation. The United Nations has a similar Treaty. This may be one person but why do films and books that sell well and are profitable always seem to kill the disabled person in the end. Million Dollar Baby, Sea Inside, Whose Life is it? etc. This is a very long list Yet the films that portray the gritty reality of life with a disability are box office busts. The reason is not exactly subtle. Most people think life with a disability is inherently bad. Some think life with a disability is so bad that life is not worth leading. Disability based bias is rampant. An untold number of people have suffered not because of their disability but rather the social response to disability. Ableism is real and destructive.

  • I thought you said that parents aren’t supposed to be telling our children’s stories or speaking for them. So why are you calling on us now to help you with your “campaign”? You’re a hypocrite.

    I doubt you even read this book. Nowhere in the book does it say that people with disabilities deserve to die. This man, Will, was in extreme pain and he wanted to end that pain. People do that every day for all kinds of conditions. That’s a part of life. Get over it and stop trying to start conflicts where they don’t exist.

    • Katrina, I assume your angry comment is directed at me. My “campaign” is to champion disability rights. My comment has nothing to do with parents of children with a disability who write about their experience. I specifically addressed the issue of individualizing disability as a means of undermining disability rights. I did in fact read Moyes book. Moyes contends this is about Will Trayner period. But her book and the film do not exist in social isolation. Her book and the film especially is merely another in a long line of films that emphatically endorse the idea death is preferable to disability. The assumption most readers will make is that all people with a comparable injury are in extreme pain and want to die. This is a worn out trope that sells tickets and enables people to shed tears and feel good about themselves. The truth is the vast majority of people who get such an injury simply move on with life and lead an ordinary existence. The Will Trayner’s of the world are rarities.

  • I read the book when it came out. I was upset with it then. I saw the sequel come out and groaned, refusing to even look at it. Then the movie came out and I’m like “NOOO!” ARGH.

    I am the parent of a disabled child. I blog about all sorts of stuff. I blogged about this, and linked to/shared posts from PWD about their feelings on this subject. I am trying to use my internet powers for good, and was thrilled to see that some people changed their minds about going to see the movie!

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