Writers Galore

Book Manuscript

Biography

     Book in search of a Title:

     Some friends asked me what I was writing about. I launched into an explanation of this writing project. I am writing "a humorous book about living with a disability..." Usually by the time I paused for breath, the friend was leaving to attend to alphabetizing their spices or some other pressing project.

      As one of the 43 million Americans who has a disability, I have face validity to write something on this subject. I have been blind since birth and ten years ago developed fibromyalgia (more on this later).      As a person who devours books to try to understand topics, I have read widely in the literature of "personal disaster" as Nancy Mairs calls it in her wonderful book, Voice Lessons.

     This is not a "walk on water" book as one of my friends calls some of these books about disability. The only time I walk on water is in Wisconsin winters and sometimes then I slip. So the title clearly could not be Triumph Over...I Overcame... or anything like that. There are moments of triumph in my life just like in yours, but not too often.

     Then there are the sufferer, victim, survivor type books. Since my life is not over I can't say for sure if I have survived. Sure, I have suffered, but haven't we all! Brokenness imagery figures prominently in some titles. I do feel some identity with a cracked pot, but only some days.

     The humorous titles are appealing but the best one I know has already been written. Splashes of Joy in the Cesspool of Life by Barbara Johnson. If this was a movie, perhaps I could get her permission to do Daughter of Cesspool, or Cesspool II.

     Nowadays, there is also the question of political correctness. Do I have disabilities, handicaps, am I visually challenged or what? Since I was born 50 some years ago, long before political correctness, I choose to call a spade a spade. I am blind; I have disabilities. I work in an academic setting, but I still opt for the shortest word possible to describe the situation. Another form of new think with which I disagree is that New Age "you have no limits," "you can overcome anything with proper nutrition and imagery" thinking. No matter how many carrots I eat, I doubt if Northwest Airlines will hire me to fly it's planes, even if I really want to.

     So if this is not a courageous book about a very special person nor a "meditation enabling me to kiss my seeing-eye dog goodbye" book, what is it and why should you read it? Because in my 50 years of life I've collected some pearls of experiences I'd like to show to you. Pearls are made when an oyster deals with an irritating grain of sand. There are some little pearls and some big pearls in this collection. Chances are good that you or a friend or a family member will experience a chronic illness or disability in your life. The longer you live the better the chances get. So forewarned is forearmed! Think of this as a travel book about going somewhere that you're not quite sure you want to go, but your job may send you there anyway.

     So we're down to the finalists in the title search.
     Category I-Generic: Living Fully, Life is Good, Life is for the Living,etc.
     Category II:-Living with: Living with Blindness, Living with Fibromyalgia, could be too specific. If I limit it to Living with Blindness and Fibromyalgia, there may be three others interested in the book.
     Category III: My Life and: A popular form including several My Life and Times already published. Even My Life as a Dog. I guess my seeing eye dog will have to find a different title for his/her memoirs.

     The winner is Welcome to My World with a subtitle, Essays on Life with Disabilities. Runner-up: "My Life and Welcome to It....... But, oops, a book by James Thurber has this title. Yes, he was visually impaired and funny and I admire him, but I'm not him. Serendipity steps in. I'm in a bookstore looking for a gift for a friend and the clerk points me to a section "to the left of inspiration". Eureka! The title is born! Subtitled, so library catalogers will know where to put it: Essays on Life with Disabilities.

      I discovered that I was blind when I was three. My brother, three years older and sighted, and I were out in the backyard of our red brick house in Kalamazoo, Michigan pulling dandelions out of the lawn. We each got a penny for each dandelion and I was hard at work earning money for a doll I wanted. At that point in my life I could see the yellow flowers if I was six inches above them. So I was crawling around on hands and knees with my nose almost touching the grass. My brother, of course, was scooping them out from a much greater distance and getting a lot more. The realization hit me suddenly: he was getting more because he could see and that wasn't fair! I lay down and howled, kicking the grass with my three-year-old logic mentality perspective on the unfairness of life. My parents did the right thing I believe, i.e. they did nothing. Over the last twenty years as a counselor I have worked with hundreds of people who have realized at various ages that life is not fair. The realization comes hard at any age. After I shed my fit of rage I got back to work picking dandelions. After all, I really did want that doll. The story has a happy ending; I did eventually earn enough to purchase her. She came complete with glasses (no dolls with white canes or guide dogs were available in the early 1950's).

      My parents realized much earlier than I that I was blind. I had been born a month premature and spent a month in an incubator with high levels of oxygen. Ten years later doctors realized that these high levels were not necessary and were shorting out the retinas of premature babies. By six months, it was obvious that I was not following objects with my eyes and my parents began the treks to doctors that characterize the lives of parents who have children with disabilities. A University of Chicago research study on these prematures gave my parents access to testing and guidance about how to raise a blind child. I was pronounced above average in intelligence and my parents were encouraged to opt for mainstreaming me, or integrating me as it was then called, rather than sending me to the residential school for the blind eighty miles away.

     God must have known what he was doing putting me into this family, My mother had a master's degree in teaching the deaf and knew enough about mainstreaming to want it for her daughter. She worked with school authorities from the principal to the school board to establish a resource room where I could learn braille and typing. Then she did the endless hours of reading aloud to me to make up for the books that were not available in braille or on tape.

      Teachers were also keys in the success of my mainstreaming, so much so that I can still remember the names of each of my kindergarten through twelfth grade teachers. They did the extras that were necessary long before there were laws saying that this has to be done as there are now. They read aloud what they wrote on the blackboards; they assigned me a chore I could do like watering the plants instead of erasing the blackboards; they stayed after school for me to read my math homework aloud.

      Mainstreaming worked for me by putting me into situations where I had to compete with sighted kids and cope with unequal situations, I learned early to ask for what I needed. When the class started playing volleyball in fourth grade the only part of me that connected with the volley ball was my head. I learned after a few encounters of this kind to ask to be excused from the volley ball games. Unfortunately adaptive physical education was not an option so I stood in the corner. My self esteem was based on being the captain of the spelling bee team, not the volleyball team.

      Mainstreaming also gave me course choices that I would not have had at a residential school but did not give me some choices that I would have had there. For example, in seventh grade when the choices were: Home Ec (for girls; this was the early 1960's), Shop (for boys), Art (mainly visual) and singing, I was counseled into singing even though I cannot carry a tune in a bucket. The Home Economics teacher had let it be known that she didn't want me in her class. Burning down the building was my attempt at cooking. Now with laws like Public Law 94.142, I could take cooking, but then I sang (quietly, please!). But in twelfth grade I could take pre-calculus and physics. In the lab sciences I was allowed to do what I could (including getting frog eggs under my fingernails just like everyone else cutting up those creatures), but I concentrated on the calculations instead of the performing the experiments in our lab groups. As for cooking I learned to do that when I was a graduate student and moved into an apartment, since my mother also worried about my burning down the house with my cooking efforts. Just to keep the record straight, in over twenty years of daily cooking I have had one fire where my flannel shirt caught fire and I thoroughly singed myself, but did nothing to the house. Swaddled in bandages I cooked the next day to make sure I still could. Cheerleading and being on the homecoming court were not options for me as the only blind student in my high school. Instead I joined the chess club, where the boys were.

     In seventh grade I began to learn to use a long cane. Before that my older brother got part of his allowance from walking me to school and I got around in school by memorizing what was where. At first I hated the cane! It marked me as different and blind. Growing up in the sighted society, I had the usual stereotypes of blind people. They fumbled around and couldn't do much. The only blind people in our readers in those days were Louis Braille, the inventor of the writing system for the blind, and Helen Keller, who was also deaf. These and one wretched poem about the seven blind men going to see the elephant were the only times people like me were mentioned. No wonder I didn't want to carry a cane and be publicly labeled as blind in this way. Of course, walking very slowly around school carrying a braille writer and a stack of braille books labeled me anyway but the cane was the last straw for my fragile teenage ego. But the teachers and student teachers from Western Michigan University's orientation mobility program were smart. They capitalized on what every teen wants almost as much as fitting in, independence. They asked, "Do you want to be able to go downtown alone? Go off to college somewhere?" I could practically hear the car keys jingling! "Yes!," I replied and kept learning to tap the cane to the left when my right foot went forward.

     When it was time for college, even though there were four colleges in Kalamazoo, I knew I had to get out of a protective home setting and go try my independence skills. So I went to Michigan State University, a school of 42,000. It was 86 miles away from home; the limit my parents had given me was 90 miles. For the first time in my life I was not Katherine Schneider, first blind student in the Kalamazoo Public Schools, but just another student and I loved it. There were about 20 other blind students at Michigan State and we met as we passed in the reading rooms set aside for reading aloud in the library. At first I assiduously avoided the rest, thinking they were blind and what could I possibly have in common with such low life? Later I made some good friends among them and began to realize that some blind people I like and some not. We are all people first, after all!

     I started out majoring in physics, my career aspiration having settled on this in seventh grade, but after two tries at a particular calculus class and a C- in advanced chemistry I began to wonder. The can't-hack-it was not because I was blind as many suggested but because the brain just didn't work that way. At the same time I needed a class at 8 a.m. so I took psychology and loved it. I got involved with crisis phones and other volunteer work where my listening skills, honed for twenty years as a survival skill came in handy and was off and running toward a career in clinical psychology. A Ph.D. from Purdue University (what else could an overachiever do but go for a Ph.D.), teaching and counseling, and some administrative work at counseling centers at universities in four states have given me twenty- five years, full years, of a professional life.

     But before you assume, gentle reader, that "she lived happily ever after" and that this is one of those "walk on water books" as I said in the introduction, it wasn't, read on! In the living of this life, there have been many opportunities to rise and fall and rise and limp onward.

     Note: The book tells what it is like to be blind from A to Z.