Search This Blog

Thursday, April 28, 2011

Mendicant Literature Then and Now

I have been spending the last few evenings savoring a book I have already read. I read the book last year and was inspired to read it again because I met the author at a conference recently. I am referring to Susan Schweik’s Ugly Laws: Disability in Public. This book not only reveals a little known aspect of disability history, the so-called ugly laws, but is based on original research and reliance on archival material no other scholar has delved deeply into. I know how hard and time consuming task because I wrote an intellectual biography of Leslie A. White that was based on archival material.

I admire everything about Schweik’s book—the writing is clear and concise. Schweik is able to illustrate larger points about disability using specific examples from the ugly laws. Even the book cover is outstanding. It has a well-known photograph by Paul Stand circa 1916 known simple as “Blind Woman”. I have looked at this photography many times and wondered what did Strand think when he took it. What if anything did this woman say to Strand? I have always found the image haunting. What was this woman’s life like? Was she happy or sad? This in turn makes me think how the lives of people with a disability have radically changed since 1916 and the enforcement of the ugly laws. To begin, we people with a disability live. That is most of us have a normal life expectation. I am proof positive of this as are many men and women who have spent the majority of their lives paralyzed. But what sort of life do we lead and how does it compare to those that came before us. Schweik, in part, has filled this gap. Schweik calls the stories of our crippled forefathers mendicant literature. Schweik writes “Mendicant pieces are books and pamphlets written by handicapped or penniless persons, usually telling their life story, and peddled by them to earn a living.”. This history of disability is not known nor is it taught widely. Sadly, such a history is not respected or valued even on college campuses. Schweik writes about a disturbing but telling experience. As she was conducting archival research she recalled “There’s something for everyone here another Harvard librarian said, apparently amused at my interest, as she brought me a catalogue organized alphabetically [Amputee] followed by [Blind] and then [Crippled]. Here… presided over by dreams of free speech, by ghosts of eugenics, and by the medical catalogue of impairments, mendicant literature speaks of the ugly laws”.

Ugly laws led to the production of medicant literature. This literature, the life history of people with disabilities, is important. It is important because it illustrates a vibrant past and has troubling implications about the present. We people with a disability have not created an effective political coalition. We are hopelessly splintered. Blind people advocate for themselves as do the deaf, the paralyzed, etc. While much advocating is performed it is largely ineffective. Have we really advanced far beyond an antiquated medical model of disability? In a word, no. I sincerely doubt people think about disability rights until it affects them directly. This is a problem we have not begun to address. All the laws in the world will not advance disability rights unless there is a social demand for such rights. As of today, I feel as though disability rights are invisible or worse an annoyance to many. Do we really need those expensive ramps and elevators given how few people use them? I would contend we as a society are hiding behind laws and regulations and bogged down in the minutiae of access when our problem is much larger and deeply rooted. We do not ask the important questions: why are disability rights thought to be different from other civil rights? Why do we tolerate inaccessible building and a shockingly high unemployment rate? Why are lifts not on every school bus in America and an interpreter for the deaf at every public event? These are the sorts of questions we should be asking. These are the sorts of questions we should be united to solve.

Sunday, April 24, 2011

Callous Hands and Loss

It has been about seven months since I found the wound on my hip. I never dreamed I would still be dealing with the wound all these months later. I hate wound care and changing my dressing. It is a daily reminder of how fragile the paralyzed human body can be. I am also appalled by all what I have missed. My life since last September has been like a black hole. I missed the Fall harvest. I missed teaching a full academic year. I missed an awesome winter and did not ski once. Seven months is along time. I can now see that my body has changed. I am not better for this experience nor is my body stronger. I know my strength will come back once I am able to sit up all day and resume my regular activities. I am sure I will be kayaking at some point—surely before the end of the summer. This prospect excites me.

Since I can get up more today, a warm sunny Easter Sunday, I went for a walk with my son around my property. Yikes, I have my work cut out for me. My vegetable garden is a mess. Last Fall I did not clear it out. My garden beds around my home are a mess. The deer have had a field day. I have a tree down that I need to cut up with a chain saw and then split up the wood for the wood-burning stove. My head is spinning with all that needs to be done. This does not bother me—I love manual labor. It clears the mind and strengthens the body. It was not until I was inside and my son engrossed on-line that I had a strange sense of loss. I looked at my hands carefully and was stunned to realize my callous hands are smooth. My hands have not been callous free in thirty years. My hands have felt like like shoe leather for decades. I am both proud and embarrassed by this. I tell people with hands like mine no one pushes me around. This is both literal and figurative. My hands are like those of a man who has performed manual labor his entire life. In short, I have ditch digger hands. I am extremely self-conscious about my rough hands. They are rough and hard—an occupational hazard. No way to get around this. A solution does not exist—not that I want or am seeking a solution. Amazingly I am sad to be without my calloused rough hands. I am stunned I miss my callous hands. I have always tried to hide my hands from women. Surely a woman wants a man’s hands to not feel so hard and calloused. How ironic. I was not happy with calloused hands and now I am not happy with callous free hands. For the first time in my life, I want my calloused hands. It was not until today I realized being self-conscious was misplaced. My calloused hands are a symbol of an active life. A life I hope to get back to very soon.