This post is terribly difficult to
write. But the conversation needs to happen. One of the most significant
threats to people with disabilities in this country is the belief that our
lives are just not worth living. It’s a belief that permeates the media, sneaks
into casual conversation with a flippant “I’d rather die than be in a
wheelchair” and moves stealthily into our culture tucked neatly beneath the
cloak of mercy. It’s a belief that declares bodies “broken”, bodies deviant,
and people confined. It is a belief that relies heavily on assumptions about
the quality of a life like mine, and a belief that is rarely questioned. My
wheelchair is routinely treated in popular culture as worse than death by
people who have not lived in it or considered that just like any other life,
mine has moments of great struggle and moments of great joy. That isn’t the
nature to life in a wheelchair. That is the nature of life.
This being said, I was devastated
to open up the newspaper and read the story of 32-year-old Tim Bowers, who
sustained a severe spinal cord injury a few weeks ago that would have left him
a quadriplegic. Just one day after the accident, Mr. Bowers was allowed to
remove life support and die after learning of his diagnosis. One day. Where was
the counseling? Where was the opportunity to talk to another person with a
severe disability? Where was the chance to explore his options, and learn about
his “new normal?” I understand that traumatic injuries are devastating, but it
is natural to feel despondent just one day after the accident. I believe with
my whole heart that had a non-disabled person been feeling suicidal, the health
care system would quickly suggest counseling, quickly take anti-suicide
measures. But Mr. Bowers was allowed to determine the value of his new life on
the spot. Nobody questioned the hasty assumptions, the hegemonic model of a
disabled life as a terrible one. That should scare you.
I am not minimizing the
life-altering quality of sudden disability, but it is disturbing how quickly
the newly disabled are presented with a bleak picture, made to feel like a
burden, and never given a chance to consider that life in a wheelchair does not
have to mean the end of a valuable life. The problem in society is that it
carelessly allows people to believe that it is
the end, no questions asked. The “no one would blame you if you want to die”
attitude says “Yeah, I don’t see the value of your life either” and people with
disabilities can extinguish their lives unchallenged. We believe what we are
taught, and we are taught to expect empty lives when we become disabled. I do not
feel angry at Bowers for his choice, but I do feel angry at the world he lived
in for making him feel like that choice was only natural.
It makes me weep that the world he
lived in, the same one that I call home, engrained in him so deeply that a life
in a wheelchair wasn’t worth it that he would rather die than face it. Tim
Bowers was a young husband, a soon to be father. The world told him that he
wouldn’t ever hold that baby, and made him feel that a wheelchair would make
him less of a father. I wish I could have told him that holding a baby does not
make you a father. I wish I could have told them that I too may never be able
to hold a baby on my own, but I still dream of my future child, knowing that it
is love, not motor skills that make a parent.
I wish he had been given time to
realize that the world still needed him. Where are the cries of “it gets
better” for people with disabilities, the reminders that support is out there?
Where are the reassurances that it’s okay to ask for help? Aside from a few
whispers from the disability rights community, they are not here, and society
quietly, unequivocally agrees that no, our lives cannot possibly be fulfilling,
and remains unwilling to answer the above questions, perhaps due to the shame
that we haven’t bothered to come up with any good answers. Perhaps if we
invested the time in creative support systems that we invest in negative media
portrayals of people with disabilities, Tim Bowers would have made a different
choice. Perhaps if we found time to go above basic standards for access, Tim
Bowers would have woken up knowing that the world he lived in would find a
place for him. Perhaps if people like Tim, and myself, were more frequently
measured by their human potential instead of their financial “cost”, he would
have thought to himself, I will be okay,
because the world will embrace me. Instead, I sit here and grieve for him,
and the attitudes that made him too fearful to carry on when his circumstances
changed.
I hope that one day there will be
no more stories like this, because we will know how much we are loved and
valued no matter what our physical abilities may be. That we will not have to
be afraid of how others will see us once we become disabled. That we will go
forward knowing that we are entitled to a valuable existence. And no one will
be hastily allowed to die because no one gave him or her a chance to learn how
to live again.
