I have spent the majority of my life living in New York. While I consider myself a hardened New Yorker, I never truly felt I had a place to call home in the city or suburbia. In suburbia I was always the only wheelchair user in town. When I lived in Manhattan long ago, I was never welcomed. The subway system was impossible to access and getting on a bus was a battle. In the pre ADA era, my presence was decidedly unwelcome. New Yorkers being the people they are were not shy about letting me know I had no place in society. I was screamed at on a regular basis and more than once was spit on for getting on a bus. The net result is loneliness has been a life long companion. I have always longed to live among my people. My people are the disenfranchised hard ass survivors who through bad luck or happenstance live with a long term disability. The physical or mental malady does not matter. All those with an atypical body are welcome in my conception of the world. Give me people with a host of mental illnesses, traumatic brain injury, spinal cord injury, amputees, the deaf and hard of hearing, those with any neurological condition etc. These are the people I gravitate toward.
Since my arrival in the Denver area, I have largely relied upon mass transportation. Before I moved to Denver I knew the mass transportation system would be vastly superior to anything I had used in the past. Certain cities like Denver with a long history of disability activism excel at providing excellent and accessible mass transit. I spend a good portion of my day on various busses and trains. This prompts me to think about why I have always been drawn to mass transit. I think my attraction to mass transit is largely based on my back ground in anthropology. The life blood of the discipline is ethnography and participant observation. In anthropology one obtains "data" via experience. That "data" is gathered via ethnography--living among a people--and participant observation--doing what others one is studying do. When I walk out the door, I feel as though I am conducting an ethnography among hostile people. The people I interact with are the hordes of bipeds that for complex reasons find my existence objectionable. I am perpetually out of place. Social denigration is commonplace in large part because the social and constructed environment is not designed to be inclusive. The intolerant reaction to my existence takes a heavy toll on one's body and the manner in which I am willing to engage others. In trying to sort out why I feel different in Denver I turned to Erving Goffman whose seminal work on stigma and the social model of disability laid the foundation of disability studies. Goffman's work has stood the test of time and I cam across a rather obscure paper that was published after his death: "On Fieldwork" published in the Journal of Contemporary Ethnography circa 1989. He wrote:
by subjecting yourself, your own body and your own personality,
and your own social situation, to the set of contingencies that play
upon a set of individuals, so that you can physically and ecologically
penetrate their circle of response to their social situation . . . . So that
you are close to them while they are responding to what life does to
them. I feel that the way this is done is to not, of course, just listen to
what they talk about, but to pick up on their minor grunts and
groans . . . . You try to accept all of the desirable and undesirable
things that are a feature of their life. That ‘tunes your body up’ and
with your ‘tuned-up’ body and with the ecological right to be close
to them (which you’ve obtained by one sneaky means or another),
you are in a position to note their gestural, visual, bodily response to
what’s going on around them and you’re empathetic enough—
because you’ve been taking the same crap they’ve been taking—to
sense what it is that they’re responding to. To me, that’s the core of
observation.
When one uses a wheelchair or has an obvious disability, one is always "tuned up". My social radar is never turned off. When I am on the bus or train I am on high alert at all times. As Goffman noted, if you are empathetic enough you can make sense of what people are responding to. No other social environment is as diverse and unpredictable as mass transit. The social exchanges I have had since moving to Denver fall into a few group composites:
Homeless People: Homeless people are often quick to ask me why I use a wheelchair and what I do for a living. I tell homeless people I am an anthropologist working in bioethics. I stated this just yesterday and a homeless man proceeded to tell me about a near fatal motorcycle crash he had that led to bankruptcy, opiate and alcohol addiction, and semi homeless life. He told me you want to see ethics fall by the wayside, go to the ER as a street person and seek health care. No health care will be provided as the first call is to the police to get you out of the ER. Every word uttered is considered a lie and no one has a heart. You can't so much as get a band aide. The bitterness he felt was palatable as was his angst. The man was a raw nerve of hurt.
Baseball Fans: The Colorado Rockies play at Coors Field and in August they have a had a few 1:10pm games. I have gone to a few games and the NY Mets cap I regularly wear has led to some interesting baseball related conversations. The social exchanges are disconcertingly normal.
New Age Healers: Non religious natural remedy health nut people in Denver are determined to heal me. These people are not shy about vitamin regimes as a cure for paralysis. These people often hand me their cards and are all too happy to tell me with a change in life style I would no longer need a wheelchair. With this group, I am mute. Polite but silent.
The Sob Story: People want to know why I am crippled. I am good at avoiding this question and shutting down this line of inquiry. However, many people who rudely inquire about paralysis are quick to share their tragic story. The story is always the same. Tragic accident followed by a miracle recovery.
Terminally Ill: This is a new group I have not had much experience with. At least six times in the last two months a person has sat near me on the train, asked me about paralysis and quickly rifts into a discussion about end of life. I find these conversations odd. Is it assumed that I am terminally ill because I use a wheelchair? Is the leaping off point simply my disability and the assumption I have been through the medical mill? Do I look like a doctor? I am told the diagnosis and the prospects for life which are usually quite dim. They then share their views on assisted living versus hospice care and how terrible it is to be a patient on a neurological floor. I am not at all sure how to respond to this group of people.
Needlessly Curious: When someone asks me why I am paralyzed more often than not I will ask the person why are they asking me that question. Once in a blue moon, the person will have an excellent reason for asking. The norm however is the stranger is idly curious. For these people I have no patience. I try to be polite and give of the body language that screams go away.
All of the above conversational experiences have a Goffmanesque quality. Anonymity is never possible when one has a significant and noticeable disability and you have the audacity to venture out in public. I must add a proviso here: one group of people do not engage me: other wheelchair users. Almost every time I use the train a fellow wheelchair user gets on and rarely do we get past the nod of the head stage. Oh but does that nod contain meaning! Sometimes I feel like a Knight. We are the hard ass survivors. We have endured. We have go through the social mill just to do the ordinary. It is with great pride that I am among my people. This has been the best move possible for one reason alone: the overwhelming sense of loneliness dissipates by the day. Now if the weather would turn cold I would be beside myself with joy.
