by Jaime Fradera
From the Editor: Once we have put aside the anger and despair that very often accompany the onset of blindness, we sometimes forget or want to forget the power that such emotions can have over the lives of those caught up in the struggle against them. Those in the helping professions who have no healthy experience with disability can make things worse. Federationists sometimes forget that we have been given the key to emotional healing and renewed hope. Not everyone dealing with the physical loss of sight is ready to come to terms with life, but for those who are, we have a priceless gift to offer them.
In the following piece Jaime Fradera traces his own journey through increasing deafness and blindness to new life and freedom.
Jaime has taught blind and visually impaired library patrons in Denver, where he lives, to use computer access equipment. He is now taking further courses in order to work professionally in this field. Despite the bleakness of the landscape through which he has come, Jaime is living proof of the strength of the human spirit and the power of the philosophy of the National Federation of the Blind.
This talk was given at the Sunday, January 23, 2000, worship service of the First Unitarian Church of Denver.
The trouble with our prevailing value system is that our value to society is measured using criteria that have nothing to do with the quality of our lives—the only thing that really matters. (If you doubt this, just try paying off your credit cards with love, and see what happens to you.) The tragedy is that so many of us buy in to this fallacy even when we know better. Many blind people are taught from a very early age that they cannot be useful, that they have nothing to contribute, that their proper role is to receive, not give as others do, and that they have no business aspiring to a normal life. But all of us are in fact living, breathing people. Our life experiences and struggles are very much alike, and there is very, very much that you and I can do, and live, and celebrate together.
If this story has a prologue, I suppose it would be that I spent nine years as an inmate of the Texas School for the Blind in Austin, Texas. I use the term “inmate” deliberately. In 1965 the school was enclosed by a tall fence, and I remember the school as a bleak and frightening place, but as a teenager I was taught to eat with utensils and tie my shoes. In etiquette class, although we were taught about proper dress and table manners, in a subtle way we were also taught that being blind was not altogether respectable. I was taught to wear hearing aids and sun glasses so that I would appear to be a normal person and conceal my deaf-blindness. The hearing aids and glasses were heavy and uncomfortable to wear, but I’d been taught I had to wear them anyway because I wanted more than anything to be a normal person; I wanted to live in the greater world.
Three years after graduating from the school, I went off to a big, four-year university. This would be my first real foray into the normal world, and making it to the big university meant I was a normal person. It was the fall of 1977, the heyday of disco rock, and it was exciting to think what a party animal I would be. I went to parties, drank beer, dressed correctly, used good table manners, and spent many a night at the disco bar, where I tried with growing desperation to find the incarnation of Donna Summer, but I often left the disco bar alone, my ears ringing and ringing.
After a time it began to dawn on me that in spite of all I was doing to be popular, hardly anyone would notice, and those who did only wondered why I didn’t have a dog. It was as hard as ever to get dates. And as for finding a girlfriend, well that looked even more hopeless–or so I thought, back then. To make matters worse, I began to lose more and more hearing. Frightened by what was happening to me, I turned to the counselors and audiologist for help. But instead of cautioning me about drinking and wearing ear protectors, these so-called counselors suggested I try to go to more parties, that I wear t-shirts so I would look like everybody else, that I call the crisis line if I got too upset, and that I take auditory training.
They set me up with a wanna-be clinician, a grad student named Donna. Donna looked at me and saw pathology. For weeks and weeks we did the auditory training. But the underlying illness went unchecked, and my hearing only worsened. Donna had another bright idea for fitting in to the college social scene. Since I was blind, I should get a dog. When I reacted angrily, she hastily shifted gears and said that maybe I should think about wearing glasses, which I had stopped doing because they hurt. The trouble was my eyes didn’t look normal; I couldn’t watch TV or flirt with girls for example. If I wore glasses, I would be more approachable, less blind, and people wouldn’t stare at me as if I were a Martian. If the glasses didn’t work out, if I still couldn’t make friends or get dates, perhaps I could have eye surgery. I ended the semester more frightened and isolated than ever, racked by waves of dizziness and paralyzing despair.
Eye surgery: this would make me look sighted. It was something I hadn’t thought about before, and I guess I’d tried everything else. But then I remembered another time three years before, when I was happier, when I felt needed and loved. I remembered Linda.
Linda was different. We had met in the hospital where I was a patient, and she a student nurse. Alone among the nurses Linda truly seemed to care, for she brought the joy and precious sun my shattered spirit needed most. Every day she insisted that I dress in street clothes before she came to see me. No one else did that. She wanted me to walk with her on the hospital grounds; she wanted me to have lunch with her. She kept picking on me. She wouldn’t leave me alone. She said I was more interesting than the other patients. She kept telling me to smile, and smile, and smile again, because I looked so much better when I smiled. No one did that either. Linda wouldn’t be another caretaker. After I got out, she made me promise not to tell her dean what we were doing, and we began to date.
It was the spring of 1976. I was in love, and all the world a golden apple. Music still transports me back:
Do you know where you’re going to?
Do you like the things that life is showing you?
Where are you going to?
Do you know?
Good morning, yesterday.
You wake up and find I’ve slipped away ...
Gather roses while you may.
Collect the dreams you dream today.
Remember; do you remember the times of your life?
Through Linda I glimpsed the world that I aspired so much to enter. More precious than all the joy she brought me, more dear than all the love she gave, was the realization that, even as I needed her, Linda also needed me in a way that no one else had done before. Linda was sighted, yet never once did she complain about my eyes—only that I wasn’t smiling, and would I please stop sending flowers. Part of all the golden treasure Linda saw locked up inside me was my own living humanity. Unlike anybody else she knew, I seemed always to have time for her. It wasn’t what I couldn’t do that mattered, but what I had that counted most. It was for all of that and more that Linda loved and needed me, that a world of lonely people needed me. What difference did it make that I had been a patient; what difference did it make that I was blind?
All this I seemed to have forgotten. For as my hearing kept worsening and my life falling apart, my hopes of a better life were dying hard and in bitterness. I clung more desperately to the notion of still making it socially in college, of looking sighted, of being popular and normal. There seemed only one thing left to do, and I made an appointment with a state eye doctor.
The first step, I was told, was to wear a little plastic shell like a contact lens in one eye for a few weeks. Although it would hurt, the pain would go away, after which a larger lens would be implanted, which would hurt too. I wore the lens, but having something in my eye was a constant aggravation; and by now the anguish was more than I could bear. I pulled it out and threw it away, but it was more than my eyes that bled and hurt. Nothing would stop the gushing tears.
I was ruining my health. Unable to hear the professors or have girlfriends or read my recorded text books, unable to do anything it seemed but sit in my dormitory room and cry, I finally gave up, threw in the towel. This seemed to kill forever the possibility that I might someday take my place in the greater world or ever lead a full and active life. If I was to go on living, perhaps it would be with a terrifying illness for which there was no cure; perhaps it would be as some kind of incapacitated stranger nobody wanted, unable to do anything but sit at home and cry.
It was here, surrounded by the twisted wreckage of my life, finally stripped of all the things I once believed in, that I at last began to see the harsh and painful truth: all my life I had done what I was told, what everybody else was doing, tried to go with the flow, join the crowd, and swim downstream, vainly hoping no one else would know I was pretending. What was the result? My dreams were smashed, and my hopes lay ruined, my spirit all but broken. Whatever virtues there might be in conformity, in sameness, I finally understood that, no matter what I did, I was never going to look sighted, that I could never be the same, that my struggle to conform had been a failure. For three long years I languished. Then two things happened.
First I was given an audio program by a motivational speaker. (I had to put the tape recorder flush against the one ear I had left.) The program extolled the virtues of excellence, strength of character, and achievement with stories of people who bucked revered tradition, who swam upstream, who were different, and inspired all those around them.
Second was finding the National Federation of the Blind. Through my new friends in the Federation I came to understand that there was nothing wrong with me, that I was living for more than just myself, that I did not have to hide my blindness or my deafness, that we shared a common story, a universal vision of working, playing, and living beside our sighted partners, colleagues, and friends; that our purpose, our obligation to ourselves and one another was not to be the same but to be different.
Being different—it was something I had not thought about. It seemed there was nothing else to do. So for many months I listened and studied, pondered and planned, until I knew that I was ready. And one day, when once again I saw the world a golden apple and knew I was still very much in love, I left home for the last time to swim upstream for the first time, to trade security and sameness for something spiritual and sacred: the gifts of life and freedom.
Jaime Fradera can be reached at <firstname.lastname@example.org>.