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.
Very, very well said, thank you.ReplyDelete
Actually, I would argue for everything you said, times ten.
Why the additional order of magnitude? Because the only reason Tim Bowers was even conscious was the presumption that he would want to die. He wasn't awake, horrified at his physical condition, and questioning whether he wanted to remain on life support. He was in a medically induced coma, and the decision was made to bring him out of that coma for NO OTHER REASON than to, in essence, give him an engraved invitation to die. Who among us could react any differently, given that set-up? The question of whether his prognosis was really as bleak as he was led to believe is troubling too - how could they even know, so early on? - but that's secondary. Even given the worst-case-scenario in terms of recovery, the act of waking him up to offer him a "choice" was horrific, and the framing of that "choice" was reprehensible. (He was told he might remain institutionalized for the rest of his life and never hug the people he loved again - both outrageous. Forced institutionalization should not be the outlook regardless of injury level, and a hug should not be defined by arm strength. Appalling.)
IMHO, this was no more a legitimate choice than if the tormentors of a "bullycide" victim not only convinced their target of his/her worthlessness, but went on to physically put a gun in his or her hand. This wasn't a passive failure to dissuade him from throwing away his life; it was an active campaign for that decision. The cruelty is unfathomable, and the fact that most people don't even see it confirms just how devalued people with disabilities are in their minds.
I'm reading on disability issues as a sociologist and activist right now. Your piece was well written and thought out. My disabilities are invisible, not visible. However, I have also experienced medical neglect: I was accused of being a drugs addict when I wasn't!ReplyDelete
Thank you for writing this...
I have a modest blog myself, but I write on social/hospital/corruption issues.
Hi, this is really touching. When my mother became wheelchair-bound at 77, I was shocked at how we both were treated. Her for being in the chair and me for guiding her around. I always assumed that our culture was fair to the disabled and found out, to my great disappointment, that that is just not true. The euthanasia debate is on the boil in Canada. I've written about this too; I am really afraid for the disabled and the elderly: http://goo.gl/Kwew8vReplyDelete
Thank you for working through all that it took to write this. I have a twin brother who is severely handicapped and I have seen the presumption that he would be better off dead in action.ReplyDelete
I do research on the topic of euthanasia, and wrote a paper on just this issue, called "Dead too soon? Spinal cord injury and quality of life". If you're interested, you can find it at www.imfcanada.org/issues/dead_too_soon
Beautiful post, Kat! You bring up an interesting paradox that is, to let that person make their own decisions regardless of what they are informed by, and the immediacy of the decision which you mentioned. I read somewhere else in another article that this decision was made because he had previously said that he would, in fact, rather die than be in a wheelchair prior to this incident. But I can only say that this feeling of empowerment is not always universal, as I believe in myself, but sometimes also dread holding my own baby, as you say. Very well written.ReplyDelete
Thank you everyone! This issue is very near and dear to my heart. Please keep fighting for me and for everyone else with disabilities.ReplyDelete