Last May I heard about a new film coming to the big screen called Me Before You— a love story that featured a main character with a disability named Will. I was very excited. However, as the disability community also got wind of the film, we soon learned that the portrayal of Will’s disability was not what we imagined or hoped for.
TV and film has, on a whole, not done a great job portraying people with disabilities. Often a character with a disability is shown as a pity case, and used as a trope in the story. They are rarely in lead positions, represented with accuracy, written as a character with depth, or played by actors with a disability. Granted, this is a critique of entertainment, which is not always accurate and genuine. On the other hand, this is the 21st century—an era of the ADA—with rapid adoption of international disability rights and an expectation of inclusion.
In Me Before You, Lou, a woman in her mid-20s, finds herself suddenly unemployed, so she takes a six-month temp job caring for Will. Will, in his mid-30s, was a successful businessman from a wealthy family who became paralyzed from the neck down after being hit by a motorcycle. Lou eventually learns the reason her caretaker position is temporary and ends in six-months: that is when Will has scheduled his own suicide at a facility in Switzerland. Lou makes it her personal mission to change Will's decision to end his own life and in the process, they fall in love. Despite his newfound love, the big plot twist of the story is that Will decides to go through with his suicide plans. He even describes his decision as a gift to both Lou and his parents; so they would be unburdened by his needs.
The Reality of the Situation
Learning to adjust to living with a new disability is seemingly insurmountable. Losing a part of what you considered to be your identity requires grieving for the loss and all that comes with it: denial, anger, depression and eventually acceptance. Will was likely still in the midst of this process. Some accounts by real people living with quadriplegia say it took more than five years to stop defining themselves by their chair. Yet, Will is allowed to end his life long before he could finish grieving for his loss.
There are roughly 12,500 new spinal cord injuries (SCI) in the United States every year and the WHO reports that that number could be as high as half a million globally with 90% resulting from trauma. While these people are recovering from their SCIs and adjusting to a new way of life, are we as a society okay sending a message that their life is not worth living? I’m certainly not.
Hearing about portrayals of disabilities like Me Before You concerns me for people struggling with depression. One example, in particular, is a youth with a disability that Jessica and I met who has a history of attempted suicide. A film like this makes me fear for how they feel society values them and their well-being.
By extension, I also feel that the movie suggests that Jessica's life is not valuable either. It implies that suicide should be an option for people living with a disability. In no uncertain terms, Will says that if he cannot live his old life (a fully able-bodied one), then any other life (with a disability) is not worth living. It also suggests that my life would be better off not "burdened" by what scarce help I give to Jessica. I know the exact opposite is true.
Obviously, Will is not an amputee. So how does a character with quadriplegia relate to depicting other people with disabilities? It boils down to the fact the very few characters with disabilities ever make it on film or TV. When so few depictions are available, they tend to represent the whole rather than a particular case.
A Better Portrayal
There are more flaws in the film, including the lack of accuracy regarding the limb function of someone with Will's injury and Lou's savior mentality; both of which are damaging to the image of life with a disability. However, the more people voice their opinion about how people with disabilities are portrayed, the more likely Hollywood is to listen.
Take for example a few other characters with disabilities and their portrayal on screen. In Game of Thrones, Tyrian Lannister, who was born with achondroplasia, a common form of dwarfism, is one of the smartest characters on the show and one of the few people able to survive the deadly political battle to sit on the Iron Throne. Finding Dory did a decent job of depicting someone who lives with memory loss being a multi-dimensional character who has dreams and aspirations (though I have issues with many of the supporting characters). One of the most famous depictions of someone with a disability is Darth Vader. He is a villain devoted to evil, sure, but he lives as a quadruple amputee along with other health issues — disabilities used to add dimension to the character.
In researching this blog, I uncovered Andrew Pulrang's "Tyrian Test." It's a variation of the Bechdel Test, which examines the depiction of women in media, however, this test looks at the portrayal of people with disabilities. His test comes off as long and complicated. So, I would like to put forth my version which I'll call the "Jessica Test." Media that portrays people with disabilities is “good,” when the following conditions are met:
- It features at least one character with a disability, where
- Their disability is not central to the plot, and
- The character talks about something other than their disability.
A test this simplistic is not meant to be absolute; only to open the conversation and set a minimum standard that audiences should expect from film makers.
Right Footed
I am a bit biased, but one movie that gets an A+ in my book is Right Footed, the documentary about Jessica’s life, and some of mine, too! The film is now available for purchase on DVD, iTunes and several on-demand TV services! Five years ago, we first met Director Nick Spark on a visit to South Pasadena, California. What started as a short film with no budget blossomed into an international, multi-award-winning feature film. It chronicles Jessica’s life and achievements, and follows her growth from keynote speaker to one-on-one mentor to international disability advocate.
Nick and crew followed us to Ethiopia, where only three percent of children with disabilities were attending school, according to the WHO. Jessica and I saw how overbearing social assumptions about people with disabilities can negatively impact their standard of living, and we saw how HI teams were working to fix those wrongs so that more schools would open their doors wide to children with disabilities. A year later, we met Nick again, this time in the Philippines where we worked with HI to ensure people with disabilities and other vulnerable populations were receiving the supplies and care they needed after Super Typhoon Haiyan.
There is, though, one important message that Right Footed conveys beyond the things Jessica has done and seen. For many years, Jessica did not have a mentor or someone to challenge that unspoken assumption that 'disability means inability,' but now she has a chance to reach out to kids with limb differences she may never have been able to meet otherwise and say, “If I can do it, so can you.”
In the film, Nick captures the real Jessica and shows the reality of who she is. He accurately portrays her life, as a person living with a disability. She shines through the screen as a woman who loves, dreams, fears, and stands up for her beliefs.
As more characters with disabilities make it onto the big and silver screens, I hope they will continue improving their depth, authenticity, and diversity. Whether on film or in print, stories reflect on our society and moving forward, I want to see a good reflection.
Do you think Right Footed meets the “Jessica Test”? Do you agree with the “Jessica Test”? Do you have a favorite character with a disability? Did you ever think of Darth Vader as someone with a disability? Reach out to me via email [You can reply directly to this email, and it will reach me!] or find me on Facebook and if you haven’t already, watch Right Footed on iTunes and DVD!
- Patrick Chamberlain (with Jessica by my side)
