by Penny Reeder
Imagine yourself as an artist, a painter in fact, with a growing reputation among fellow artists and critics, and gallery owners, and the "circles" in which artists move. Imagine that you're a person who revels in the subtle variations of color, texture, form; a person whose studio is filled with the scent of turpentine, gesso, and tubes of pigment collected over years of travel, catalogued and kept at the ready for waiting canvases.
Now imagine that the owner of a famous gallery has contacted you and invited you to mount an exhibition on the walls of her prestigious space, and imagine that you have to tell the famous owner of the famous gallery, no.
No, you cannot supply the number of paintings she requires.
Not now. Not next spring. Not ever. Because you cannot see well enough to paint any more.
This is the scenario that describes the life of Andy Potok in the late 1970s. Potok was a man who loved color and art and the act of creating on canvas, who could no longer see well enough to travel safely without using a mobility cane, who had spent time out of necessity at a residential training center to acquire the skills of blindness. Potok had taken all the steps to change his career -- from that of a talented visual artist to that of a counselor for other people with impaired sight. He owned a talking book machine, a CCTV, an array of magnifiers, talking watches, check guides, and mobility canes. He even led a support group for others who, like him, were attempting to cope with the vision loss caused by the progressive congenital disorder called retinitis pigmentosa.
He listened, and sympathized, and empathized -- the man who was also by now legally blind himself -- guiding others through the predictable stages of denial, grief, anger, and eventual -- what, resignation? Hanging onto each treasured micron of daylight, serving on the board of a foundation which sponsored research to conquer RP or slow it down or minimize its effects, hoping and hanging onto each discovery, each prognostication of an emerging cure -- the man with the new career, the man who had acquired all the documented skills of blindness, the man whose daughter was already showing the signs in adolescence that she had the disease as well, Potok was a man who would have done nearly anything to escape his fate.
When he read in London's "Sunday Observer" about a woman who claimed to cure RP with the venom of bees, Potok put aside all reason. He transferred his support group over to the care of someone who was not as needy of support as he and traveled to England and spent month after miserable month there, submitting to the stings of hundreds of nasty, angry, venom-filled bees and the crazy rantings and paranoid ravings of the woman who said that her bees could reverse the ravages of the RP and give people back their sight. Potok became ill from the bee venom. Sometimes he imagined that his vision was improving, sometimes he knew that it was not. Yet he was desperate to recapture the perceptions of daylight and color that had allowed him to succeed as an artist, a breadwinner, a man who could remember a past when disability was a blessedly distant abstraction.
Potok's wife, who had reluctantly accompanied him on his quest for regained sight, returned to the states to resume her own career as an artist. Yet he stayed, desperate and alone. He brought his daughter to London to experience her own wretched encounters with the angry bees and their venomous, maniacal mistress.
Finally, having failed to regain his sight but succumbing to a kind of desolate resignation, Potok returned to the U.S., and gradually settled into the life of a blind man, a former visual artist, searching for a different kind of creative outlet. He found it in writing. He set about writing an account of his despairing search for a reprieve from blindness.
His book, "Ordinary Daylight," was published in 1980, and that same year, he came to Louisville, Ky., to talk to other blind people like himself about his experiences of blindness and his nascent adjustment to it. If you were at the 1980 ACB convention, you may remember hearing him speak.
In 1980, I was in the throes of my own struggles of adjustment to blindness. I had not yet discovered ACB, and, in fact, even reading a talking book on tape seemed out of my reach as a stay-at-home mom of three young children, learning to function in a world without definite shapes, devoid of the pleasures of reading print. Too bad that I didn't discover Andy Potok back then when we were sharing so many of the same experiences, raising so many profound questions (I can't see who's driving the car; will he, or is it she? Will they think I'm a total snob if I don't wave? What if I wave to every passing car? Won't that invite some unwanted complications?) These are the questions that people who used to see struggle with. Potok carried me right back to that place and those dilemmas when I recently read his 1980 book, which is still available on four-track tape from Recording for the Blind and Dyslexic and the NLS.
Twenty years ago, Potok's life was one of duality. Sometimes he was a blind man, sometimes he had friends who were blind, sometimes he even allowed himself to enjoy their company. But there was his other life too, the one with the normal people, the ones who could see, the ones who discussed art and letters and events and considerations far removed from blindness. He didn't know how to live concurrently in both worlds, and he felt like a poser in each, one who was "passing," about to be found out, in both realms.
Today, Potok has found a peace and acceptance of blindness that reminds me of the state of mind that it has also taken me 20 years of experiences and relationships to acquire. Potok has written a new book, about coming to terms with the disability of blindness and the people and the relationships that have allowed him to get to a new contented place, a place where the day-to-day struggle with disability can be damned annoying, but a place where there is contentment, serenity, friendship -- yes, the shrinks would say "adjustment."
Like Potok, I learned to cope by trying and failing and sometimes succeeding, day by day, to do things with alternative techniques. I will never be a "super blind person," I won't read braille at 200 words a minute; probably by the time I figure out how to operate a four-track player without mixing up all the tracks and controls and speeds , forgetting where I was when I fell asleep and never being able to find that page again, four- track tapes will have finally been replaced by CD-ROMs or memory cards or something else more or less daunting; with a cane and with a guide dog, I still lose my way virtually every time I get cocky enough to think I know where I'm going. No, I won't be a super blink, but who among us will?
Like Potok, I learned from others. I learned from my friends who are blind and visually impaired. I have made friends with people who have an assortment of disabilities and abilities. We have all learned from one another. I learned from a rehab teacher, and from an occasional rehab counselor. I learned from sighted friends and neighbors, and kids, from a supportive family, from students and teachers at George Washington University, from colleagues in ACB, from writers and readers and mentors both known and waiting to be contacted in person. Like Potok, I have been intrigued by policy makers and the increasingly vocal disability rights community; I realize what I owe each of these people and am humbled and grateful for all they went through and the milestones, like the ADA and IDEA, that resulted in no small part from their struggles and their determination. I have been liberated by a talking computer and screen readers, by braille, by improving mobility skills and a guide dog who keeps me safe and makes me feel confident.
Potok's connections with other people with disabilities and with the accumulated accoutrements of independence, like JAWS for Windows, a guide dog, and a sense of humor buoyed by relationships with caring family and friends, that taught him, liberated him, allowed him to be at home in a body with failed eyesight, are captured in the chapters of a new book, "A Matter of Dignity." The first chapter of that book, which follows, will allow you to meet Andy Potok and to have an appetizing taste of his ability to write and to capture the people and the sentiments and the essential character of all of those people and movements and organizations that allow people with disabilities not merely to"succeed," but to thrive.
Here is the preface of Andy Potok's book, "A Matter of Dignity," published in late January by Bantam Books/Random House, and available at your local bookstores right now.