My life with you has had four major epochs. I write this letter today as the second open letter I have composed to you. The first was when I was 40 in 1989. I read it during my induction into the National Hall of Fame for People with Disabilities. When I was told that I would be receiving that honor, I learned that you and Franklin Roosevelt, had received the same recognition posthumously during the organization’s first induction ceremony. I was so humbled that I felt compelled to tell my story concerning my perception of you over time.
Act one. Helen, I began to go blind when I was a little boy of five. My parents were told by an optometrist that I was pretending that I could not see since he could see nothing wrong with my eyes. So, because the adults believed I was pretending I could not see, I had to pretend that I could. It was a hard few years. I had just begun to manifest one of the five hundred variations of the progressive retinal disease Retinitis Pigmentosa. There are 100,000 Americans with RP, so perhaps there are only two hundred with my orphan eye condition. I certainly forgive the many clinicians who missed my rare disease. By the time I was eleven, I had lost 95 percent of my visual acuity resulting in my inability to read print without a high-powered magnifier which I finally was prescribed that same year by a low vision clinic, a new program concept. By that time, I was under the care of a kind pediatric ophthalmologist who believed I could not see, as he helplessly documented my slide into severe visual ruin. Just before sixth grade, he advised my parents that I should learn Braille through a sight saving class, as they were called back then, held within a rural elementary school far away. There I would learn Braille and typing. So it was that in September of 1960 a very frightened little Jeff climbed into the yellow school district car for the first long, lonely ride to my new school. I always got to class an hour late and no sooner had instruction begun after my arrival than it would stall again when my special ed teacher arrived to pull me out of class. We would walk down the long hallway in silence, and I would be ushered into her classroom for my one-on-one instruction with Ms. Stone. She took her work seriously while my fear of blindness resulted in my great resistance to touching Braille. I could see the pale Braille dots if I held the paper one inch from my good eye and I told her, I did not need to touch them since I could see the Braille. With increasingly tense patience she would take the stiff Braille paper from my hands, lay it flat on the table and guide my young fingers over the raised dots for their proper reading. Time and again came the contest between her will and my stiff-arming the tactile alphabet – my last defense against the mysterious, fearful world of sightlessness. I would have benefitted from counselling, or better, by being introduced to another boy who was my age and who possibly also had low vision and had accepted Braille. But no such approach or boy existed and so, instead, Ms. Stone had only her own wits and available tools at hand.
In desperation, she laid an eight by ten black and white photograph of you, Helen, before me on the table. You were alive then, at 80. She said “Braille will help you. Why, look at Helen Keller! She uses Braille every day and she has accomplished so much in her life.”
I stared at the photograph before me. You were perhaps in your seventies in the photograph. You were heavy set, had gray hair and your eyes looked funny. I had what was called a wandering eye caused by my central vision being destroyed in my right eye by the cone-rod dystrophy, the version of RP I had, which no one had yet diagnosed. I was terribly self-conscious about my funny eyes and seeing yours made me sink with despair. Helen, I rejected you, I was ashamed of you. I did not feel like I was like you. I did not want anyone to associate me with you. The fact that you were deaf, and blind seemed an impossibly horrifying condition, and Ms. Stone’s suggestion that I was like you, made Braille seem even more foreign. During our year together, my resistance had been so strong that Ms. Stone recommended that I return to my own school district without Braille. She did, however, teach me to type, and my parents bought a large-print-typewriter which served me well. I put you away in that memory place where I stored everything from sixth grade, including the Braille alphabet, which I took out very much intact, dusted off and began to use when I was thirty-five.
As an aside, for some reason, my deteriorating vision plateaued when I was eleven. My pediatric ophthalmologist’s diagnosis had settled on optic atrophy, a stable condition, which was wrong. One more thing Helen, during sixth grade, Ms. Stone had me re-type a poem you wrote at about my age, called “The Fairy Queen”, “The Ice Princess”, or something like that. The poem was so good that you were unjustly accused of plagiarism. That typing lesson was also a value lesson I would apply the following year. In seventh grade I wrote a 3-page poem on my large-print-typewriter entitled The Bull Fight. My seventh-grade English teacher also accused me of plagiarism. I had cause to remember your example of advocating, standing for the truth of your innocence.
Act two. Advance 13 years. While attending the University of California at Berkeley, I became a burgeoning disability rights activist when I was 24. A guiding principle was that all of us with disabilities shared common life experiences. We were the same at heart. Although the leaders of the movement were generally people who had had polio and used wheelchairs for mobility, I revisited my sense of you through the lens of disability rights. Among those of us within the Berkeley disability rights group, I became one of the leaders who was bringing forward the unmet needs of people with visual disabilities. Independently I read and learned about your leadership, successful advocacy efforts, and work on the forefront in the earliest days of disability, welfare, and human rights.
Another thing Helen, when I was 27, I recognized my own deep fear of speaking with Michael, a man with severe cerebral palsy. He had a letter board, but it was useless with my low vision, and I hated to say please repeat yourself again and again. I decided right then that I would never again let fear block me from communicating with any other person. In that consciousness I went back and spoke at length, many times with Michael, and I studied sign-language in a little class for blind students, with Joanne Jaurequi, a deaf woman who ran the new deaf services department and reported to me at the Center for Independent Living in Berkeley.
Over the years, thanks to my facility with sign language and fingerspelling, I have had many conversations with people who were deaf, and a few times those who were deaf and blind. Often, I was the only one in the room who spoke their language and I felt their relief and joy in meeting a hearing yet partially sighted person who had learned sign language. My severe low vision meant that, although I could sign well enough to be understood, my ability to read sign put me in the category of someone who was deaf and blind since I had to read signs by hand, which is a skill which requires patience and a willing signer for the slow hand-on-hand-contact.
I thought of you as my guide, Helen, as I thought to be the one who reached across the divide of disability in order to communicate with others locked behind the wall of isolation without enough interlocutors.
My vision seemed to be growing worse again. Three different trips to three different eye specialists resulted in the same conclusion. My vision was very hard to measure since it was deteriorating pixel by pixel and my small islands of vision were extremely hard to assess over time, even for the best low vision specialists. It was in my imagination – my vision was stable, they all said.
In 1980, at the Helen Keller Centennial Conference in Boston, where I was representing an assistive technology company which was introducing the first personal electronic Braille word processor, I was given a sepia tones poster, which contained a large photographic portrait of you as a young girl with Anne Sullivan, in high collar, long sleeved, full skirted Victorian dresses. I had the portrait cut out and properly framed behind glass. It still hangs in my office, reminding me to communicate.
Act Three. In 1982 I began work as director of rehabilitation at the Cleveland Sight Center, a leading private blindness agency. The executive director, Cleo Dolan, had met you, Helen, and your signed photograph was on the landing of the staircase off the lobby of our building. When I first climbed those stairs, I was stopped in my tracks. The photograph was exactly the same one as Ms. Stone had placed before me 32 years before. I looked at your smiling face and I did not see your eyes in the same way I had when I was only 11 years old. Now I did not notice them much. It was rather seeing the face of an elder who was smiling back across her prodigious career that had shaped the American experience, and the world experience for so many. I glanced at your picture hundreds of times during the decade of that career period at the Cleveland Sight Center. (I established several new programs, one of which was regarded as a world model and Doctors Without Borders referred a client from Vietnam to that program. I even had reason to reach out to the organization Helen Keller International, and I thought about how different my sense of you was compared to how that frightened boy had seen you.) I felt that you were encouraging me on, smiling that beneficent smile towards one of many younger protégés of yours. It was there where I was one of only three staff members, who spoke sign language, one was the deaf-blind-specialist, and the other a communications teacher, who I moved into my new computer access center as our first assistive technology teacher. Her name was Jean Babinchak. She taught our few clients who were deaf and blind, amidst her other regular blind clients.
The fact that we both knew fingerspelling, allowed me to read her frantic message “Teach them to sign!” the morning after a devastating brain cancer surgery during which she had lost her ability to speak. I did teach her inner circle to finger spell.
During another crisis, I was driven to the emergency room to help Doris, a deaf-blind woman who was a client of ours. She had been taken there after a serious fall. I served as her interpreter with the doctors who were addressing her injuries until the qualified interpreter, the deaf-blind-specialist, who was also her case manager, arrived. Doris had been relieved to see me so that finally she could tell the doctor about the pain in her shoulder from her fall on the ice.
In December of 1983, when my wife was pregnant with our second child, one of my eyes was injured while playing with John Kyle, our seven-year-old son. This time the ophthalmologist had a dire and, for the first-time, accurate diagnosis once he got past my minor eye injury. The good Dr. Wolfe told me, in no uncertain terms, on that dark winter afternoon, that I would absolutely lose the rest of my vision. As I sat in stunned silence, he asked me to repeat what he had said, making sure I had digested his shocking news.
That introduced my next stage of relationship to you, Helen. At 34, knowing I would become blind, I began to read everything I could about you and you became my one and only true disability rights hero. Your lifetime of advocacy, leadership, and accomplishment set a high bar well beyond my reach as any hero’s stature should be.
While I could still see, I sought to fill my memory with visual images that I could revisit after I became blind. So it was, while working in Oregon, I flew in a single-engine, glass-canape plane at 1,000 feet over the Willamette River Gorge where I be held the magnificent spillway of some huge federal dam and marveled at a narrow waterfall that fell majestically down the canyon’s steep face.
For years, every six months, I was in New York City for meetings of the editorial advisory board of the Journal of Visual Impairment and Blindness at the American Foundation for the Blind, your own organization which I knew and loved.
After one meeting, I delayed my flight home in order to spend the afternoon looking at the extensive collection of photographs of you, Helen, held by the organization you founded. Their librarian brought me a dis-organized lot, many file folders containing collections of individual photographs, taken at different stages of your life, printed in varying sizes. It was their complete catalog of photos of you. I looked carefully at them all; I only recall one. I stared at it a long while. In my hall of memory, I can see that portrait of you as a pretty, young woman sitting at your desk, writing a letter. Smiling, you were looking a little off camera.
You mastered so many forms of communication Helen; speaking although you could not hear; reading lips by touch through the Tadoma method, Braille, handwriting, and Morse code, I believe. You wrote poetry, books, thoughtful philosophical memes on disability, blindness, and deafness, facing adversity. I think you were in vaudeville shows, won an Oscar, you changed public policy saving babies vision, rode horses, changed the world. You were unstoppable, unsinkable, a force of nature.
Now comes act Four. When I was around 50, I was seeking answers to my concerns about my gradual hearing loss. It was about that time I had begun to wear hearing aids which still help a great deal. I sought out the genetic counselling department of the Cleveland Clinic. It was the clinic’s specialized retina department where my eye condition had been diagnosed as either inverse RP or cone-rod dystrophy. RP is a genetic condition, although in 50 percent of cases, like my own, there is no known genetic history. A fraction of those with RP have Usher Syndrome, differing combinations of vision and hearing loss. Maybe I have Usher’s. I learned that perhaps you had Usher’s Syndrome as well, Helen. But without genetic history there is no way to tell whether my hearing loss will result in profound deafness, hopefully an unlikely outcome. My consultation was of no value. Again, I was on my own, but now I had a sort of guide and peer counselor by the name of Helen Keller. This is not hyperbolic, Helen. I have gone blind, and I have learned that living in the valley of the blind is not so bad, in part because I have blind friends with whom I laugh, share the moments of ambiguity, experience with new technology, and generally bond thanks to our shared humanity and disability. My approach to hearing loss includes finding humor in the bizarre mishearing moments that come throughout every day. Losing my hearing is frightening, naturally. Disability is concentrated loss. Since all humans share loss, blindness, hearing loss or any disability does not really separate us, but rather it unites us with the rest of the human family through the shared experience of loss if we can break through our own and their fear. I should know.
I have lost a serious chunk of hearing and I have recently noticed a new loss which has crept into my left ear like a sneakthief silently pulling more precious hearing away. Helen, if I should lose all my hearing, which is unlikely, I will never stop being able to communicate. I can read and write Braille; I can use American Sign Language. Advancements in technology, my iron will, and my loving family will be there. Solid. Especially my wife Cristi, whose daily supportive interaction with me might have to change but will never be broken. I will continue to advocate to teach, to write, to sing my songs of inclusion, and to reach out to the wide human family concerning the wholeness of all of us who live with disability. I have gone from being afraid of you, Helen, to revering you, to feeling you encourage me onward as my silent ally.
You stand alone on the world’s stage. Your life was so different than mine, and yet in many important ways much the same. I have just learned that you said you would see again when you died. I thought that too, and it inspired me to write, “We Will See One Another in the Morning”, which is on my hospice album Peace Sweet Peace.
I will close my letter with three rounds of sincere gratitude. First, for you, looking over my shoulder for years in my office, posed on an early photographic sepia-toned plate as a serious child, reaching towards Anne Sullivan’s teaching hands. Secondly, I thank you, the lovely young woman, smiling at me from your portrait, which hangs in my hall of memory. Helen, I finally thank you, the elder whose image morphed from a face which frightened me to one which encouraged me and gives me comfort. You are my hero, and I think of you as my friend. If I had been fortunate enough to have known you, I think we would have had long talks and I would have learned so much more from you.