A few years ago, I spent a
memorable evening with my friend Scott Rains. Although Scott and I had only met
online before that day, he was kind enough to let me tag along with him to the
2013 Superfest Disability Film Festival in San Francisco, an hour’s drive north
from San Jose. The event that year took the form of a mock awards ceremony
called The Dissies, wherein satirical honors (to wit, gold bobbleheads of Timmy
from South Park) were bestowed upon the most egregious portrayals of disability
tropes in the history of film. (If you
missed out, there is video posted here: https://youtu.be/epE67x5Ns_w - Scott’s dramatic turn as Dr. Strangelove
accepting his “Dissie” appears at 1:02:50.) The film clips and speeches were
hilarious, and the joyfully defiant solidarity in the room was palpable. Scott
and I had a great conversation on the way home. He remarked on how alienating
it can feel to sit in a movie theater and feel like the only one who’s bothered
by the message on the screen, and in contrast how empowering it had felt to sit
with hundreds of like-minded members of the disability community and mock the
foolishness of those demeaning messages. I am so grateful to have taken part in
that day.
Today, I sit looking at the
juxtaposition of two upcoming events on my Google Calendar. This weekend marks the widely-anticipated
premier of a movie that deserves a “Dissies” event all its own: the film adaptation
of the 2012 novel, Me Before You.
Just days later, there is a memorial service for Scott. I will be
attending only one of these events, and it won’t be the movie. As the
disability community reacts, with understandable distress, to a film trailer wherein
a quadriplegic protagonist tells the woman he loves, “I don't want you to miss out on the things someone else could give you”… I think of Scott and wish he
were here to scoff this foolishness with me.
How we would have rolled our eyes at the irony of using a #LiveBoldly
hashtag to promote a movie about a guy who is determined to die! But Scott is
gone, and Me Before You is just beginning its life as a cultural
phenomenon. Nobody ever said it was a just world.
Scott became a quadriplegic in
1972, when he was seventeen. Adapting and moving forward, he went on to study
abroad, earn a PhD, marry, teach, serve as a pastor, work as a consultant,
travel the world, speak and blog to a wide audience, and revolutionize the
movement of accessible tourism. Scott epitomized “living boldly.” He did so,
not to defy expectations or to prove a point, but out of his innate joy and
curiosity. He loved exploring, taking photographs, befriending and mentoring
others, and building alliances to create positive change in the world. He was
one of those people who make everyone feel like they’re his best friend. Scott
was diagnosed with an inoperable brain tumor on the last day of 2014. Even when
he communicated his prognosis clearly, people obviously couldn’t believe that this
vibrant and expansive man wasn’t going to get better. The last time I saw him,
we laughed about the social media response to his photos. Any time an old picture
of a youthful and energetic Scott appeared, it would be met with a flood of
celebratory comments about how much better he was looking, and how he’d be back
on the road in no time. He tolerated the wishful thinking with good humor.
Scott wasn’t getting better, and he knew it; but he outlived his initial
prognosis and made the very most of the time he had. He died at home a month
ago, peacefully, with his wife by his side. He sought neither to hasten his
death nor to turn his last months into a pyrrhic battle; rather, he weighed his
options, lived his values, and gave as much time and energy as he could to
those he loved. He set an example in death as he did in life.
I’m
not trying to idealize Scott. I didn’t know him well enough to know his flaws
and struggles, but that doesn’t mean he didn’t have them. People are complicated, irrespective of
disability; and the tendency to perceive people with disabilities as either
mythically positive or stereotypically bitter is one of the many ways in which we
able-bodied folk make their lives more difficult. I’ve had dozens of friends
and acquaintances over the years who have lived with quadriplegia, and
shockingly enough, they’re just… people. My best quadriplegic friend helped me
to rejoin the human race when I was at my most defeated, and unquestionably made
me a better person by being in my life. My
worst quadriplegic friend ended our friendship without warning and vented his
contempt to others rather than bring his issues to me as I trusted a friend to
do. Funnily enough, those best and worst friends were the same guy. Like I
said, people are complicated, and life is just like that sometimes. We’re all a
mess in one way or another, and disabled people are in no way obliged to be any
less messy and contradictory than anyone else. It isn’t their job to embody other
people’s narratives, whether that means personifying somebody’s idea of
tragedy, or inhabiting somebody’s pedestal of triumph and “inspiration.” People
are entitled to simply live and make the most of the hand they’re dealt,
without having other people second-guess the value of their lives. They are entitled to write their own messy,
complicated stories. There are those who
argue that Me Before You illustrates this principle of free choice and
autonomy; but they are overlooking the fact that the character making the
choices was penned by an able-bodied author who, by her own admission, had
never met a real person with quadriplegia before she wrote the novel.
Jojo Moyes is a British author who
was moved to create Will Traynor, the disabled protagonist of Me Before You,
because she was troubled and intrigued by the real-life story of Daniel James,
the young rugby player who chose assisted suicide at Dignitas following a
disabling injury. Moyes’ impulse to explore the emotional terrain of James’
decision in a fictional context was not, in itself, a bad thing. “If you have a story that won’t leave the
front of your head, that’s what you need to write about,” she has explained.
She is a gifted writer and a compassionate person, but she botched this
project, and she didn’t put herself in a position to be reality-checked by
anyone who could have shown her where she was going wrong.
The problem is that Moyes conflated
two fundamentally incompatible goals as she crafted her novel. The first was to ask, given a person in
despair following a loss of physical ability, what could make that person’s
life worth living again? The second was to ask, how could Daniel James have
chosen to die as he did, and have convinced his family to support and
facilitate that choice? Moyes failed to realize that the same story could not
possibly answer both questions. She invented the character of Louisa Clark – a
love interest for Will who has no counterpart in the real story of Daniel James
– to drive the quest to give Will’s life new meaning. Leaving aside the fact
that we all have to find meaning for ourselves, Moyes set Lou’s mission up to
fail, because Will’s eventual decision was a foregone conclusion.
I read Me Before You in
2013. I’m not much for romance novels, and the main reason I didn’t say a lot
about the book at the time was that I was embarrassed to have read it at all.
But having seen the plot summary, and the fact that it had already sold over a
million copies, I needed to know what Moyes was putting out there. It was… an
interesting read. I liked the first part
of the book more than I expected to. Moyes is an engaging and witty writer, and
she deftly captures the alienation that ignorance and fear about disability can
create. She begins to develop the characters of Louisa and Will, and sets the
stage for them to find genuine love together.
And then…? The story derails. About halfway through the book, Moyes
seems to realize that if she continues with authentic character development and
the pursuit of a nuanced answer to her first question, she’ll never find an
answer to her second question, because Will Traynor will adapt and grow and
find love and meaning in his life, as real people with disabling injuries do. So, she shifts gears. Will stops evolving, digs in his heels, and
commits to the path of self-annihilation by assisted suicide. Louisa,
meanwhile, mirrors his dogmatism with her frantic yet repetitive campaign to
“make Will happy.” She plans lavish adventures and lobbies for him to live as
if she’s been appointed Director of Marketing for Planet Earth. The story
becomes inauthentic, dull, and downright annoying. Ultimately, the whole
so-called “romance” amounts to nothing, Will is euthanized, and Lou is left
with a big inheritance and a tear-jerking farewell letter about - you guessed
it - “living boldly.”
Did Moyes mean to assert that life
with a disability cannot be worth
living? Of course not, she protests - Will is just one individual. True enough, but
he is the only individual Moyes has crafted
as a vehicle for exploring this question. She throws in a few nominal quads who
choose to live, faceless placeholders that Lou meets in an online support
group, but they are never developed in a way that portrays a real person
finding real value in life. They’re just proxies for choosing to live, and
ambivalent proxies at that. The bottom line is that Moyes abandons her question
about finding reasons to live, in favor of her compulsion to explore why one
man chose to die. It was never possible
to do justice to both questions, and Moyes did far more harm by posing an
important question she did not intend to answer than if she had never asked it
in the first place.
The widespread success of this
novel was troubling enough, but now it’s 2016, and the book has spawned a
movie. When filmmakers are tasked with condensing a story whose audiobook
clocked in at over 14 hours into a two hour film, they will inevitably mine the
collective subconscious for shortcuts. Movies use familiar imagery and idiom to
evoke culturally ingrained ideas and stereotypes, to augment the story they
actually have time to tell. For a movie like Me Before You, that means leveraging
what audiences already believe about disability to advance the story line. This
cannot end well. The trailer alone was far more upsetting to me than anything I
read in the book. A few weeks from now, millions of people will have a whole
new, detailed, fictional experience in their heads, to validate their
misconceptions about life with a disability. And where is the counterbalancing
signal-boost for all of the real disabled people who live fulfilling,
meaningful lives? Where is the publicity for the research that shows that
quadriplegics, on the whole, rate their quality of life just as highly as
anyone else… but that their doctors vastly underestimate those same ratings?
Well, here is it, if anyone is interested: http://www.theatlantic.com/health/archive/2013/12/reconciling-life-and-quadriplegia/281821/
I won’t be going to watch the
latest albatross of tragic stereotyping get fastened around the necks of people
I love and respect. I will be going to a
memorial service, if I can even get a seat in what I’m sure will be packed
house. I will be gathering with others
whose understanding of “living boldly” was enhanced by the privilege of knowing
our friend Scott. I will be wishing that all of those moviegoers were getting a
chance to know a real guy with a huge heart and a smile to match – a man who
loved his life, loved his family and friends, and loved the world that he
savored every opportunity to explore. I will be wishing that all those people who
will be wiping away tears in dark movie theaters could be mourning for the real
Scott Rains rather than for the imaginary Will Traynor. Maybe somebody will
make that movie someday.
