By Cindy Barnes Kolbe
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The author, Cindy with her daughter, Beth |
Please note: This piece originally appeared on TheMighty.com, a platform for
people with disabilities, diseases and mental illnesses to share their
stories. We are reprinting with their permission.
A disturbing hashtag is
circulating on Twitter: #BetterDeadThanDisabled. A closer look
identifies the
tag as a protest of the Me Before You movie that opens
June 3. It is
based on the fiction book by JoJo Moyes with the same title. The
main
characters are Lou, a young woman who can’t believe that she is
falling
for a man in a wheelchair, and Will, the other half of the
love
connection. He decides to end his life when a spinal cord injury leaves
him
quadriplegic, with all four limbs
impaired.
The disability community is diverse, yet it appears to be united in the condemnation of Me Before You on social media. I hate the book, too, but for more than the obvious reason. Not only because it portrays a life with quadriplegia as tragic—though my youngest daughter is a quad and one of the happiest people I know. Not because of assisted suicide—because I support the option in cases of prolonged, unbearable pain. Here’s my biggest problem with Me Before You: Will is not in unrelenting agony. On the contrary, he falls in love and is loved in return. Outside of bestselling books and Hollywood movies, real people with strong, positive connections rarely choose to die, quadriplegic or not.
“Those who have a ‘why’ to live,
can bear with almost any ‘how’.” Viktor
Frankl wrote this passage in Man’s
Search for Meaning. He
describes prisoners
in Nazi concentration camps who found a sense of purpose through
selfless acts
to lighten someone else’s load, despite brutal conditions. However, the
opposite is also true. The same sense of purpose can elude us in the best
of
times. Regardless, connections always matter.
Newly-injured quads and their
families have extensive resources available, from top rehab centers to
peer mentors from the Christopher and Dana Reeve Foundation. From local chapters
of United Spinal to helpful websites including AbleThrive, Facing
MeBeforeYou
implies that quadriplegia is the
“worst” disability, a dead end for the
helpless and hopeless. Negative
stereotypes add to the reasons why suicide is
one of the top three causes of death
for quads. Society and the media
de-value
and dismiss disability with pathetically low expectations. At the same
time, the movie publicity for Me Before You proclaims #LiveBoldly, a sad
irony for a story about suicide. Millions of people will see a movie that ends
with #BetterDeadThanDisabled.
It is impossible to make accurate
assumptions about an individual with a disability. When my daughter was first
injured, I observed other patients and privately debated the pros and cons
of a stroke to a spinal cord
injury, paralysis to a missing limb, a brain
injury to blindness. It seemed important to me that others knew Beth had a
“severe” disability—whatever that means. Not any more.
Without negating real
challenges, I believe that positive connections matter more than
limitations.
Life is a gift, not a tragedy. I choose to support media that
features successful
and happy quads, because they are everywhere—except in a
starring role in Me Before You.
Cindy’s blog is at www.strugglingwithserendipity.com
Cindy’s blog is at www.strugglingwithserendipity.com
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