You won’t look at Me before You

Protesting Disability Representation, and the Lack of Choice within the Abled Gaze

{Image of me, a white, blonde, invisibly disabled woman in a doctor’s exam room. In the photo I am standing beside the exam table, visible from the hip up, holding my hair above my head. I am looking at you.}

I am speaking to you who will not look at me. When you look, you see disability as an archaic monolith. You will not see the disabled woman who talks, walks, eats, and fucks. Your gaze is more abled even than your body. This is to your detriment.

I promise you cannot imagine my life, and remain shut from its splendor and horror alike. It became great when I flushed it full of other disabled and chronically ill people, to whom I would not have to explain or apologize for the primacy of my existence.

Me Before You is a film in which a disabled person kills himself because of his disabilities. It has been widely criticized for this portrayal, and protested by the disability community.

Let’s get rid of the idea that Me Before You is just a movie that happened. The notion that JoJo Moyes wrote a book that did well and ‘Hollywood’ said “Thank Goodness, we’re so thrilled you are here. Have all the money and make this movie. Conspire primarily with your director and leads, as you four will be held publicly responsible for a series of decisions that involve many more people. It’s so brave of you to do this. How revolutionary. Have fun.”

That’s not how movies are made. There’s a massive financial process that takes into account the social and political climate, and whether the film can perform well in multiple countries, to both recoup investments and turn a profit. ‘Hollywood’ is an industry. This is business.

I am writing this, mostly, to a collective you, referencing specific points of view voiced by participants in the creation of Me Before You. I am not shouting you out here because that might give you the idea that I speak only to you, and not to those who agree with the sentiments in your work. In advance, please have as many apologies as you offered. The count rests at zero.

When the disability community at large protests the ableism in a film, it is not only the film we protest. We protest the culture which nurtures detrimental ideas about illness, disability, and our lives. Because, fuck you, we live.

So let’s review the cultural climate around the production and distribution of this film.

Me Before You was published in 2012, with its film production announced in the spring of 2014. Brittany Maynard, who moved to Oregon to facilitate her assisted suicide, was in a lot of headlines. Her story received an outpouring of support, and Right to Die legislation got a big push.

Around the time California dropped its opposition to Right to Die, during Spring 2015, the release date of Me Before You was pushed back from August 2015 to international release this past week. Canada and the UK are currently considering their Right To Die laws. California’s law goes into action on June 9th. The Right To Die lobby also makes bank, while disability rights organizations typically work in the red.

There has also been much made over the past few years of the Opioid Epidemic and dangers of pain medication, while frequently avoiding discussion of the impact legislation has on disabled and chronically ill patients whose pain is unmanageable without this medication. Hoops and obstructions have been made, making it more difficult to access the things necessary for living without pain.

These legislative pushes seem contradictory, but work together quite well. We also live in a world where we are, among other things, used as unwilling props for restrictive measures in reproductive care, parents are given light sentences for murdering us, and our supposed undesirability is propped as an edgy foil for fashion shoots. You do not see us.

None of this supports our autonomy, bodily or otherwise, in disability. Freedom of choice does not exist within an ableist society. This is where we are.

Me Before You is also just another in a long line of critically panned disability-romance movies that continue to get made by abled people. Many of the other movies in this canon (ex. Autumn in New York, Sweet November, A Walk to Remember) feature a beautiful woman with a disabling chronic illness, whose death is written to further the development of her abled love interest. They tend to incorporate hand wringing over whether it’s right to be with someone like that, before ultimately conceding the abled partner as saintly for being able to see past disability.

The notable exception to this is 1991’s Dying Young, released during a major push for euthanasia, closely following the passage of the ADA. Like Me Before You, it also featured a disabled character written into a position of immense privilege, given a devoted romantic interest, and made abundantly clear that even with all of that, even with advantages most able bodied people only dream of, disability renders his life unlivable.

Me Before You dissects some genre staples. It separates the girl with her quirky life lessons from the one rendered slightly less fuckable (in celluloid narrative only) by disability from the halo of purity that rings each mobility device or ailment, so audiences can objectify both leads. Let’s heap praise for cleaving one trope into two.

I keep track of the comings and goings of Netflix movies, and HBO Go movies and Hulu movies, because I’m sick and home a lot and this is how I consume most media. The aforementioned canon of bad romantic movies about disability and illness have reappeared on these platforms in the last month or two, presumably part of the packaged licensing deals made by their studios. These choices, when they’re not new releases, also serve to promote the films being released concurrently in theaters.

Me Before You was not a brave, risky move on anyone’s part, is what I’m saying. It is the corpse of a canary. You are indeed showing a situation. In protesting this movie, we raise the dead canary high and shout its autopsy.

You may remember the previous films and protests, glimmers on a smaller level. They might seem more frequent these days. Our fundamental situation has not changed. What has changed, with the availability of technology, is our ability to congregate without mediation through abled allies. What has changed is we are no longer asking for space; we are taking it.

You may have noticed stronger portrayals of disability, created with our involvement, creeping into the media you consume. Among them, a show picked up by ABC for the fall called Speechless, and Netflix’s Lady Dynamite. These are not measures of goodwill. Studios and networks do not give out TV shows or make movies because they have good feels. It is because it is economically viable to do so. We are a community loud enough to be marketed towards. You won’t look at us still; you are busy staring at an invisible monolith labeled Disability.

This is particularly salient when considering the wealth Me Before You’s Will Traynor, possesses, then bestows on his abled caregiver. All this money, and my body still isn’t worth it. This is an especially aggressive position to voice, considering the enforced poverty of most people with disabilities worldwide.

I understand many of you, the people involved in making Me Before You, have had family members who are sick, or disabled. Many of you cited frustration at witnessing loved one’s struggles with what you could not understand firsthand. During the time you worked on these projects, thinking about your beloveds and the difficulties they experience, did you become angry at the myriad obstacles in the world at large, or limit your scope of pity to their bodies?

May your loved ones be granted more compassion, and intimacy with people willing to fight for their access needs, and representation, a fraction as hard as for their deaths in this concrete world. Maybe Will Traynor wants to die because he is only around abled people. Oh god. If my life were all abled people, I’d want to die too.

Let your instinctual indignation at that sting, like a wound being cleansed. Imagine how your beloveds have felt when you said you did not want to portray the struggle of routine disability, in favor of stunning measures of “normal” privilege. You fear showing our day to day might make abled audiences uncomfortable. For shame. I assure you, showing someone’s routine is normal. You are capable only of seeing it as struggle because you find it abhorrent.

They are your loved ones though; you take offense to this. Can we not see how they are so much more to you than disability?

We see you. You do not see us.

Nothing I do transcends disability. It is deeply entrenched in every thought, action, and interaction. To deny its inextricable nature is to dismiss, shirk access, make the world more unforgiving for me, and those in my community. Especially those who do not yet identify as members of the disability community, out of fear or self loathing. Those who might “want to see Paris, but as me.” You do your companions no favors by rendering disability so flat.

Disability is not the monolith you imagined, nor political body you shove back and forth across the aisle. We are not here for you, until you become one of us. Until then, we fight for our collective future, and our lives.

I have watched you long enough. Look at us now.

{Image of me, a white, blonde, invisibly disabled woman, again, in the same doctor’s exam room as before. In this photo I am standing against the far wall, wedged between the exam table and medical instruments lining the wall. Visible now from the knees up, I hold my right arm above my head. That hand is open; I am looking down, like something has dropped. The new position reveals a framed photo of a flower on the wall; it had been blocked by my head in the previous photo. The color of this photo is slightly warmer. I am doing my own thing.}