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Expanding Horizons: One Man's Experience With Choices

Editor's Note: The following address was delivered at a seminar for teachers and parents titled, On the Move, Orientation and Mobility, a Process Toward Independence. The seminar was sponsored by the National Federation of the Blind of Louisiana, the Louisiana Department of Education, and the Louisiana chapter of the Association of Education and Rehabilitation of the Blind and Visually Impaired, Alexandria, Louisiana, October 29, 1994. The Canadian Monitor is pleased to reprint it.

I was asked to talk with you about how I function and travel as a deaf-blind person. Let me begin, however, by saying that I do not consider myself to be exceptional, nor my experiences to be unusual. Most of what I have to say will not come as big news to seasoned cane travelers. But for those of you who are new in the blindness field, for those who have not known active blind people and are not familiar with the training centers operated by the National Federation of the Blind, we will begin by first examining prevailing beliefs and attitudes behind the operation of programs intended to help the blind; for it is attitudes about blindness that permeate every aspect of our society, and it is only by examining and where necessary, changing these beliefs that we can truly make government our servant and improve the quality of life for all our citizens.

Broadly speaking, there are two major concepts of blindness in our society. The accepted and most widely held view equates blindness with inability and abnormality. Blindness brings with it multiple difficulties and peculiar problems thought to be outside of normal human experience and that require a broad array of specialized services.

he blind are thought to live in a state of permanent deprivation and in a world of darkness, a world without color or beauty, a world of no joy, no laughter, no pleasure and no sun.

Accordingly, blind people are seen to need a lot of compassion, professional intervention and supervision. Much emphasis is placed on the psychological aspects and social adjustment of the blind. A good deal of personal counseling, along with a battery of psychological and aptitude testing is employed for the purpose of helping the blind person live an almost (but not quite) normal life. Because blindness is often the result of a disease process, and because most blind people are old, blindness is viewed as a continuing medical condition. Independent living aids, like talking scales or braille watches, are considered medical devices to be dispensed by a home teacher or a registered nurse especially trained to perform these functions. Because most learning is considered to be visual, it is thought that the blind cannot acquire information as well as the sighted, nor can they understand how to avoid danger. It is for all these reasons that we are taught to rely on the better judgment and professional opinion of the agency counselor, and why we are guided into stereotyped occupations touted as being good for the blind but that offer no real comparison or competition to the normal world. Without sight we are thought to have only the maturity and common sense of small children - but it is worse than that. Children eventually grow up; but not so the blind. As perpetual children, our intelligence and our humanity denied, we are insulated and therefore, isolated from both the stresses and rewards of a world in which we can't live and with which we can't cope. Sometimes these views are overtly stated; but more often, they come shrouded in euphemisms, cliches, abstruse phraseology, scholarly language and professional jargon which mostly people <169>in the field can understand. This model of blindness is expressed through heartfelt concerns about security and safety, and even by enforced custody and care. Clients of agencies holding this view of blindness will generally be passive, minimally involved in training and marginally employed, often in a sheltered setting; and regardless of how many services they receive, they will usually be seen to need even more.

The second view for blindness is in the minority, but it is the one we do our best to apply at the Colorado Center for the Blind. We consider blindness to be a physical characteristic and little more. Its problems, for the most part, are rooted in social attitudes each of us has internalized to such an extent that the problems attributed to blindness seem real. Since blind people are already using safe and effective methods of daily living, independent travel and communication, we think the problems of blindness are best addressed through an active program of individual skills training, public education and legislative reform. We stress personal responsibility and self-advocacy; and our objective is the creation of both a social climate and opportunities for the inclusion of blind people into all sectors of our society as full and equal citizens.

Let us turn our attention now to services for the deaf-blind. Most programs that try to serve deaf-blind people generally serve the deaf, and this is so for several reasons. First, the deaf community is large, visible, well organized and active. Consequently, misconceptions about deaf people are not easily supported. Second, deaf people (for the most part) function visually, so public programs or services need only minor modification to meet their particular needs, as illustrated by the fact that information about telephone relay services is generally available, whereas information about where to get braille or travel instruction is generally not. Third, most agencies for the blind, being part of the general culture, still subscribe to one degree or another to the accepted view of blindness and have little understanding about the true nature of both disabilities. They don't know what to tell or how to help their deaf-blind clients; and the result of this state of affairs is that the deaf-blind usually fall through the cracks between programs geared to meeting the mass needs of larger populations, are chronically under-served, and typically left out.

As a long time member of the National Federation of the Blind, I have heard the stories of very many people. And as a survivor of nearly two decades of traditional rehabilitation, I have seen the damage that bureaucratic inertia and institutional ignorance can wreak in a person's life. I have felt privation and the denial of opportunity; I have watched helplessly as my ambitions and dreams of freedom and a better life were smashed. Here is how it happened. As you listen to this story, bear in mind that it is all too often the rule, not the exception.

I was born in Texas and spent many years there as a virtual ward of the state. My parents separated when I was eight years old, and when I was ten, I was sent to the Texas School for the Blind in Austin. In those days the Texas school was not only divided by gender but racially segregated as well. There were separate drinking fountains, staircases, even seating areas in the auditorium for girls and boys, and woe to anybody who didn't obey the rules. Two years earlier, half of the senior class was not allowed to graduate, apparently because they were caught having an off-campus graduation party without permission. TSB was a gloomy and indifferent place, and for the most part, I was not happy there. I was lonely and painfully homesick, and for many nights that first fall, I cried myself to sleep.

It was at the Texas school that I got my first mobility training. Actually, it didn't amount to much. I was taught to walk along hallways by trailing the wall with the back of my hand, and that's really about all I can remember. In those days I had near perfect hearing and could follow voices and crowds. I followed sidewalks by running one foot partly on the grass; and I found steps or curbs by either slowly shuffling along or falling off them. When my parents came to visit me later that fall, I had a grand collection of bumps and bruises in various stages of healing to show. Some were perpetrated by my tormentor, the class bully. You remember, we all had them. Such was the level of supervision of us children that one day he made me fall downstairs and thought it was great fun to make me bump into things and tell me he was going to knock my teeth down my throat. Eventually I learned to avoid crashing into things by listening to their echoes.

At seventeen I was given a cane. It was of the short, fat, heavy variety and had a crooked handle. I was taught that there were different cane techniques. These included such things as touch, touch and drag, touch and slide, etc. I don't remember the fine points of all those techniques, and I guess I didn't find them very useful since I did not use a cane regularly until my senior year. By then I was being taught how to cross intersections by listening to the traffic. I was beginning to lose hearing in my right ear, and at first I could do this in a limited way. But as the disease progressed and my hearing worsened, I couldn't interpret the traffic flow at all, and my mobility classes stopped.

This was a big disappointment to me. I saw that other kids were getting mobility and I wasn't. I was beginning to sense that at TSB we were living in a sheltered setting, that there was a greater world outside the school fence, a world where people traveled, or went to college, found work or got married. I felt that it was in this greater world that I truly belonged, but I knew I didn't have the skills; I didn't know how I might break out.

So it was with great joy and anticipation that I finally graduated from TSB in the spring of 1974. I was sure I would finally be free, free in a limitless world with endless possibilities for a better life but my sense of freedom and joy were short lived. Although I had left the school for the blind, I was still caught as firmly as ever in the rehabilitation machine. The truth was I didn't know anything about how to live outside the institutional setting in which I had been raised, and was about to enter the darkest and most terrible chapter of my life. Over and over I was sent to the same rehabilitation facility for training. Time after time I was tested and measured, analyzed and interviewed, probed, cajoled and documented to reveal almost every intimate detail of my personal life and habits to anybody who needed to look at my ever expanding case file except me, of course.

All of this was indescribably demeaning and degrading. What if it was true? I didn't know if I could refute any of this. I was only a client; what did I know of psychology or case management? I didn't know how to set boundaries or protect my privacy, and despite the services I was already receiving, I often spent months or even years at a time sitting at home, doing nothing. I didn't know how to build a private support system; I didn't even know what that was, how it could make the difference between life and death. I only knew my surrogate parents, the counselor and home teacher, who could only offer more counseling, more therapy...

It would be hard to describe how year after year of this constant hammering, this ceaseless battering, this mind-numbing pseudo-rehabilitation can stifle the soul, how it can assault and break the human spirit; nor can I find the words to convey the depth of my sadness, my utter hopelessness, my total despair. And as the pain grew unbearable, as the illness destroyed more and more of my hearing, I lost interest in going out, then in eating, and finally in living, for everything around me said that no one cared. But that was the past, and it will suffice to say that my life did not end, that it was touched and changed forever by people who did care and who believed in me even when I didn't, and it is largely a testament to their love and to their faith in me that I am standing here today.

With this background, let me describe how I felt as a student at the Colorado Center for the Blind. I had heard many stories, and I knew the Center programs would be very demanding. But I also knew that the alternative would be to sit at home, year after year, waiting for them to send me another therapist. For the previous five years I had been waiting and working for the opportunity to move to Colorado, but nothing had prepared me for what was about to happen.

The unconventional nature of the program soon became apparent.

The day of my arrival, January 8, 1992, there had been a massive snowstorm, and I had no idea how I was going to walk on that deep, treacherous snow. Back where I came from, if it snowed like that, if you had any common sense, you stayed home; but there was no staying home here. In the wake of the storm system the weather was bitterly cold, with high winds and daytime temperatures in the teens and single digits, but my friends were very patient and showed me how to dress in layers, even helped me get back up when I lost my balance on the ice, which happened with distressing frequency, usually in the middle of the street. It was only by degrees and through necessity that I learned to travel easily over snow deep enough to obscure almost everything.

The unconventional nature of the program soon became apparent. On my first day of training (it was fifteen degrees) I was given a tour of the center. Kimberly Johnson, the cooking teacher, asked me if I would need a guide to walk with. Students at the Center are usually not taught to rely on guides for travel, but I was the first deaf-blind student to enroll. I had given this much thought, and told her that as long as I could follow directions and could get needed information with my cane, I would not need a guide. I also knew from personal experience how easily it would be to become dependent on a guide to think and make judgments, and that I would have no incentive to improve travel and problem solving skills. To my surprise everybody agreed with this, and off I went, guideless, on my first travel lesson inside, where it was nice and warm.

Before proceeding I should explain that I draw a distinction between mobility training and travel instruction. I think mobility is what you get from traditional programs, and that what is taught at facilities like Louisiana Center is travel. The word mobility suggests that the blind will go limp as a wet rag unless we are prodded to do something, but you can sit in a rocking chair and get your mobility. Travel implies something broader and wider, something that requires active engagement. Consider that when you go to your job or the grocery store, you don't mobility there, you travel; and traveling is something all of us can learn to do.

But back to the Center. As was the case with all new students, one of the teachers or senior students accompanied me each morning on the walk from our apartment complex to the bus stop for the ride north to the Center. Reaching the stop involved crossing Broadway, a major north-south artery that divides Denver in two. This crossing was chosen to teach students how to listen for and cross with the parallel traffic; but I couldn't hear the parallel traffic, or rather, I couldn't tell where the traffic was and what it was doing. So for several months I was escorted across Broadway with the students while we looked for a way for me to come to class by myself. The solution was that I could take advantage of the circular nature of bus routes by first catching a southbound bus, ride to the end of the line, then north up the other side of the street to the Center. Although this added an hour to my commuting time, it was worth it because it gave me the independence I so much wanted.

Many of the travel techniques I learned at the Center were standards taught to all students; but some we had to make up or modify through experimentation. The Center didn't have a sleep-shade policy equivalent for deaf-blind people; but there were many times when, either due to my illness or equipment failure, I needed to come to class or run errands totally deaf. It was up to me to figure out how to find and identify buses, get directions, and otherwise go about my daily business. I didn't like it but it didn't matter. It was up to me to tell myself it was okay to be deaf-blind, and to consider the possibility that deaf-blindness, with the proper tools and training, could be reduced to a normal annoyance, like slogging through deep snow, with no obvious landmarks, and finding my way to class or work without knowing exactly how on earth I did that.

The vision we share, and the task we face is to help make the world a brighter and happier place, a place where the value of every human life is recognized. . .

It would be easy, I suppose, to go on and tell you stories about my travel lessons, or about the times I got lost, or about how I use my TDD. And, of course, as I said at the beginning of this talk, my experience s aren't very different from those of most people. But as we are gathered in this room and enjoy our lunch, as we go about our daily business, commuting to secure jobs and leading comfortable lives, I ask you, please, to consider these sobering reminders: Remember that for each one of us who has broken free of the rehabilitation machine, who has succeeded, who has known opportunity and who has felt the gift of life, there are a dozen, perhaps a hundred others who remain trapped and languish in the dark dungeons of custodialism and despair, where it is always night, where life is a dead end with no future and no hope. We have an obligation to reach out to them with our message of hope and freedom before it is too late.

Remember that tyranny may come in many guises, and that it is never more invidious and more destructive than in the form of benevolent compassion.

Remember that as parents and human service workers you are a critical influence in the lives of the people you serve, particularly children.

Remember that you will teach them the skills and give them the tools they will need for the rest of their lives; but remember also that what you hold in your hands is a two-edged sword, and that if not carefully handled, a sword can kill.

Finally, remember that we who are deaf-blind are people too. We share with you the same fears and foibles, the same aspirations and hopes, the same desire for love, the same power to dream, and the need to live in peace.

It is with this universal truth, that we are more alike than different, that deep within our minds and hearts we are the same that I close this presentation. The fact is, whatever our callings and professions might be, each of us in this room is here for a single purpose and all of us work together in a common cause. The vision we share, and the task we face is to help make the world a brighter and happier place, a place where the value of every human life is recognized, a place where education and equal opportunities are available to all, and certainly, a place where superstitious, irrational and archaic distinctions between those who are disabled and those who are not, are seen as outmoded and no longer to be borne. To be sure the obstacles we face are formidable, and the challenges are great, but I believe that through collective action and concerted effort, we can go a long way toward making that vision of the world a reality. Don't you?