I have not been posting as much as I once did. This is due to the fact in recent months I have been weary. I am weary of being different. The social response to my existence is rarely if ever positive. My body is well out of the norm. I have a profound and sweeping scoliosis. I have long hair I keep in a pony tail. I have a tattoo. I am almost always the only person present that uses a wheelchair. Strangers say incredibly stupid and nasty things to me on a regular basis. Christians want to save my soul or assert I am being punished for mortal sins my parents committed. I have even been deemed the anti-Christ more than once. Health food junkies insist I could be cured if I took a rare vitamin mixture only they know of. Some of these people will whisper in my ear "I promise it works. I was once crippled too". Gym rats insist they have an exercise routine that will spark my muscle memory and get me walking again. These social responses to my presence, especially to my body, bother me. I am not a target of opportunity but rather a human being. I am rarely treated with respect. My presence for many is a shock. I get praised for doing the mundane. Perhaps the intent of strangers is good (I highly doubt this) but I do not want to hear it. In my estimation the strangers that accost me are not charitable or kind. Their intent is to separate me from the heard of humanity. Once separated I am left for the wolves. The wolves come in the form of men like Peter Singer and Jeff McMcMahn who think severely disabled infants or people who experience a high level spinal cord injury should be allowed to die. The wolves also include multiple groups that support assisted suicide legislation.
The wolves are everywhere. I am surrounded by packs of wolves and I worry for others like me. Wolves do not think I share the same civil rights as others--others meaning all those with a typical body. Bodies that are clearly not physically disabled in some way. Having a different body in the words of Robert Murphy, author of the Body Silent results in estrangement. Post disability life he wrote left him "somewhat apart from American culture, making me in many ways a stranger. And with this estrangement has come a greater urge to penetrate the veneer of cultural differences and reach an understanding of the underlying unity of all human experience". I read these words in 1987, nine years after being paralyzed. These words and the Body Silent changed my life. I was not the problem--a revelation to me at the time. I was, as were all people with a disability, liminal members society. We were betwixt and between in the estimation of Visitor Turner. Murphy noted that "The long-term physically impaired are neither sick nor well, neither dead nor alive, neither out of society nor wholly in it. They are human beings but their bodies are warped or malfunctioning, leaving their full humanity in doubt. They are not ill, for illness is transitional to wither death of recovery... The sick person lives in a sate of social suspension until her or she gets better. The disabled spend a lifetime in a similar suspended state. They are neither fish nor fowl; they exist in partial isolation from society as undefined, ambiguous people.
Society has changed since Murphy wrote about liminality and disability. In the 1980s people with a disability were indeed liminal members of society. We had no place. We had no rights. Our presence was an odious burden. We were barred from public schools and most universities. Our mere presence too upsetting for others, especially children (as a morbidly sick boy my siblings were never allowed to visit me in the hospital). Fast forward to 2015. I believe we are no longer liminal members of society. We are something much worse. We are targets of opportunity. Our existence is fodder for philosophical discussion--paging Peter Singer and other utilitarian philosophers who are all too happy to speculate if our lives are life worth living. I would contend liminality and disability have changed in that we are too numerous and expensive. We are no longer a statistical anomaly. As such, we represent a serious drain on health care dollars and the social safety net. Every request for support however large or small is met with skepticism. We are kept on the razor edge of social and financial oblivion. If we fall off the face of the earth we will not be missed. In 2006 Alice Dreger has described what I would call liminality for the modern age: "Liminal", from "limen", "the threshold of a physiological or psychological response". And this is how you know you've found someone in a liminal state: you feel in yourself in that physiological and psychological response. The heightened visual sense, the whirring gears in your head, the lava flow in your guy. You know they are on the limit because you are suddenly there with them. All a-twitter. Oh how I feel this often. A seemingly nice person engages me and I know they will drop a degrading word bomb such as "It is so good to see you out". The hairs on the back of my neck go up, my heart races, and I cannot disengage fast enough. Sometimes I am successful but not always. What I do know is that a demeaning effort is often used to denigrate my very existence. It is part social dominance with a dose of liminality. My existence is acknowledged and quickly determined to have no redeeming value. I have struggled with this since I was 18 years old. I have not had a place in society for my entire adult life. Worse, the last forty years of legislation designed to empower people with a disability is resented in a myriad of ways. The ADA, for example, has been met with stiff opposition and deemed an unfunded Federal mandate. I think liminality circa 1987 that Murphy eloquently utilized as a means of social analysis and critique was safe and insightful. Today, I am just fearful. Fearful of kind, caring others who will make the decision my life has no value and out of the goodness of their souls end my suffering or ship me off to a place out of sight and out of mind. If one thinks I am being alarmist I suggest a trip to the library and read some disability history. The past is grim as is the present.
5 comments:
It's true that disabilities make many people feel uncomfortable. I'm often asked how my disabled child is "really" doing. If I say anything other than "good," the eyes begin to glaze over or furtively search for a place to escape.
Thanks for doing what you do, William. I miss your posts during your absences from the blog. My only mild criticism is that sometimes cynicism permits missing those well-meaning people who truly desire to understand better. I'm guilty of that cynicism at times too, and that is why my criticism must be mild. :)
Thank you for speaking, again, for all of us who cannot.
Gortonrails, Ah, cynicism... This is to be avoided at all costs--especially as we age. I agree sometimes an offer to help is exactly that--a desire to help another person. This happens very rarely--about once or twice a year. When this occurs I get a heady feeling. Good people exist. Reaffirms my faith that humanity has a future.
Lily, Thanks for your kind words.
This is so bloody true. Gortontrails says exactly what a so called close friend used to say to me when she would finally leave our place in the evening (she was always hard to get rid of) She would wait till Don was out of hearing and say , "And how are you really doing?" I was bloody fine till she said that, I would say"I am really doing fine and so is the family" and she would go all flustered as if she hadn't really meant what she had meant - so now i have as little contact with her as possible - "How are you really doing?" Don would really put the spurs in when someone said something which was cruel or stupid - and I remember his "Well I am just a bloody useless cripple after all" and they would nearly swallow their tongues - we'd go away laughing but it was a black laughter if that makes sense.
Middle,
As a young married man I would buy my wife flowers once in a while. Pretty much every time I did so someone would comment "And she certainly deserves them for all she does to care for you". We would get angry and confront the person as to the exact meaning of that statement. Amazing how fast people can back track.
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