What Makes Life Worth Living In A Wheelchair: The Short List

Jenn CampJennifer Camp is an actress and singer/songwriter living in New York City.  She has performed with Open Circle in the past, including one of her original songs, and worked as Managing Director.

When I first saw the TV ads for the new film Me Before You, my first thought was, “Oh wow, someone actually made a movie about a romantic relationship between a person with a disability and able-bodied partner.” Being that the add included clips of him being hospitalized this thought was immediately followed by, “Oh but he dies in the end…that’s a bummer.”

I have not seen the movie but have researched it since seeing discussions from my friends and peers with disabilities on social media. The film is based on a novel by Jojo Moyes about a man from a wealthy family who becomes a quadriplegic after an accident, tries to commit suicide and fails, subsequently finds love and happiness and realizes all the reasons to continue living through a romantic relationship with a woman initially hired to be his caregiver. But he decides to go ahead and commit assisted suicide anyway so that he can free her of being burdened by a life with him, and to solve her financial problems by leaving her a bunch of his money after he dies. (In a nutshell)

Director Thea Sharrock states in an interview that she wanted to address the following question with this film: What might make life worth living in a wheelchair? Considering how the story ends, I personally think the only answer she came up with was that nothing does. However, since this question was posed in this way, and since I am a woman and artist who actually has a disability (wheelchair user), I feel both compelled and qualified to answer it. Before I do I want to clarify a few things and also pose some questions of my own.

Why is this even a question?

In reflecting on an answer, my initial response is, “Why is this even a question?” It reminds me of a similar response writer/director Joss Whedon has given to constantly being asked about why he writes strong female characters.

In truth, this is a question that some people with disabilities ask themselves, particularly those who were previously able bodied and acquire a disability later in life. And yes, there are people who do feel the way the character in this film does- that becoming disabled is a fate worse than death. Why do people feel this way? How is it that this perception is still so deeply rooted in our society, (given advances in areas such as assisted technology and accessibility) that people believe their life is/would be over or incomplete if they had to use a wheelchair?

A lot of it is simple ignorance

A lot of it is simple ignorance about how disabled people actually live, but even when people have someone in their lives with a disability they can be completely unaware of how they too say and do things (even unintentionally), that reinforces these negative stereotypes. Two years ago my father became a wheelchair user as I am.  All my life my dad has been completely supportive of me and believed that I can do anything I set my mind to. Yet even he has struggled to reach a positive perspective about being able to continue having a full life in a wheelchair. He does not view our life circumstances as having anything in common.

Ironically, both the author and director have personal experience with disability. The director’s nephew uses a wheelchair, and she has actually said that she hopes he’ll be “pleased” that they chose not to show how a person is transferred in & out of their wheelchair, etc, so the audience won’t be uncomfortable watching the film.

Awesome! Able-bodied people won’t be uncomfortable….cause we hate when that happens. Don’t worry about your nephew or other people with disabilities having to watch a character they identify with voluntarily commit suicide. That’s not uncomfortable or awkward at all!

Warm and fuzzy=money, ugly truths – not so much

Mainstream media is another primary reason for the strength behind this negativity. It continues to produce works that tell the general public that this is acceptable, accurate…and now with this latest story even romantic.  In the film, the character moves past the initial trauma of his accident and embraces positive experiences following it- but rationalizes killing himself as a gift to the woman who loves him. What he’s basically saying is, “I’m going to kill myself for you. I know you don’t want me to, but I’m going to anyway. It’s for your own good, you’ll understand someday.” In my opinion the only gift that gives to the person you love, is the gift of years of psychological counseling to deal with the wide range of emotions they will be left with. If the author and film makers really wanted to tell THIS story the least they could have done is make it an honest one. However, I suspect if they had actually talked to people with disabilities who have wanted to end their life, it would have squashed a lot of the warm and fuzzy feelings that they have somehow managed to twist the subject of suicide into. But warm and fuzzy=money, ugly truths not – so much. If they had gone a step further and found a performer with a disability (PWD), they would have been informed as to how many things about the script were inaccurate and insulting to the disability community.  If this movie was about someone living during the time of slavery, or someone from the LGBT community who felt so hopeless and trapped in their circumstances that they chose to end their life- would any person, media or advertising platform be calling it a heroic sacrifice? Why is it ok to do so when it is a person with a disability?

The Short List

How do we put an end to this way of thinking? One way is for able-bodied people to stop making films, TV, etc, that do not involve people with disabilities in the process and allow them both input and creative control. We appreciate your support, passion and enthusiasm…and if you have a project in mind that’s great. But please let US be the driving force of how the story is told. It is our experience to tell.  Despite what ratings, box office reports, critics and the general public might have told you- most representations of disability in media and narrative form has been grossly inaccurate, sensationalized and disrespectful. Unless you have actually lived life as a person with a disability, your perspective (whether it is as a friend, family member, caregiver, etc) WILL be different from our own.

Oh yeah- that list I promised you of reasons why life is worth living in a wheelchair. The answer is all the reasons you (the reader) currently have right now for wanting to live. Write them down and make your own list. You might just need it someday as a handy reminder.

By Jenifer Camp

3 thoughts on “What Makes Life Worth Living In A Wheelchair: The Short List

  1. Beautifully written Jen! And another thing we all have some sort of a disability. Everyday is a gift given to us in a wheelchair or not!!❤️🙏💞

  2. Thank you for this article, Jennifer. Thank you for eloquently describing what I too feel about “warm and fuzzy=money, ugly truths-not so much.” It’s right on par with teaching first year college girls classes on “How not to get raped” instead of teaching first year college boys “Don’t rape”.

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