by Deborah Kent Stein
From the Editor: This story was originally run in the Fall 2014 issue of Persimmon Tree, an Online Magazine of the Arts by Women over Sixty. Deborah Kent Stein is the writer of many children's books and the editor of Future Reflections, a magazine which is used as a source of information and encouragement by parents of blind children in the United States and beyond. She lives in Chicago with her husband, and together they have one adult daughter.
In this article Debbie describes the thrill of becoming a published author, but soon discovers that her new-found success is not enough to shield her from the perception that being blind means she is helpless and in need of special care. Here is what she says:
Some life events are so momentous that you know you will be transformed forever. That knowledge buoyed me along as I boarded a city bus to have lunch with my editor at The Dial Press. I was twenty-eight years old, and my first novel had just been accepted for publication.
"Please let me know when we get to Forty-sixth Street," I told the driver. I felt tall and proud, and my voice radiated confidence. Of course the driver would let me know when we reached my stop. This was going to be a perfect day. I had stepped into the winners' circle.
My earrings swung lightly as I followed my guide dog, Yulie, a four-year-old German shepherd, down the narrow aisle. I slipped into a seat, and she curled up at my feet. The bus ground forward through the city traffic. We were on our way.
What would my fellow passengers say if they knew they were sharing their morning commute with a genuine author? Of course, I was the same person I had been last week, before that resounding acceptance letter arrived. But now, finally, I had achieved a version of myself that the world would recognize and respect. People would know I wasn't simply that blind woman with the beautiful dog. I was a woman who signed literary contracts and rushed off to lunches with editors.
Several publishers occupied the third floor of the vast office building at 1 Dag Hammarskjold Plaza, a prestigious address right next to the United Nations. After three conflicting sets of directions from strangers, I arrived at The Dial Press suite. I introduced myself to the receptionist and told her I had an appointment for twelve noon. I was fifteen minutes early, and she invited me to wait on the vinyl-covered sofa.
"First," I said, "could you tell me where the ladies' room is?"
There was a stunned silence. "Oh, no! I'm afraid not!" the receptionist stammered. "It's way down the hall—you'll never be able to find—there are obstacles—"
What obstacle did she think could possibly stand in my way? I asked again, a firm, no-more-nonsense request for information, but she refused to give even a hint.
I considered returning to the corridor and seeking out a few more sets of directions. The minutes were fleeing, though, and I might not get back by twelve. I couldn't risk being late.
"Never mind," I said. "I'll wait." Surely my editor would have no trouble explaining how to get from Point A to Point B. She was in the business of language, after all.
I settled Yulie at my feet and thought about the meeting ahead. I had an idea for my next book, and I wondered when would be the ideal moment to raise the topic. Getting a first book published was wonderful, but I didn't want to stop there.
Suddenly I heard the receptionist saying my editor's name. "Your twelve-o'clock appointment is here," she reported in a clipped, professional tone. Then her voice dropped to a stage whisper. "She has to go to the bathroom," she hissed, "and she's blind!"
A rush of heat flooded my face. To the woman behind the desk I was not a triumphant new author. I was merely blind, with all the liabilities that blindness entailed for her. I was an irresponsible, oversized child, and at any moment I might pee on the furniture.
Seconds later an inner door flew open, and my editor dashed out to avert disaster. After a quick exchange of pleasantries, she offered to show me to the ladies' room. She was abundantly gracious, and we went on to salvage our meeting, despite the awkward start. Over coffee and dessert I brought up my new book idea, and she invited me to submit a proposal.
Publishing my first novel changed my life. I left my career in social work forever and became a full-time writer. But my first meeting with an editor was not the transformative event of that long-ago day. My pivotal moment came when I heard the receptionist's announcement over the office phone: "She has to go to the bathroom—and she's blind!"
Blind since birth, I grew up having to prove myself to others. My family believed in me, but beyond the safe sphere of home the world was full of doubters and detractors. Teachers offered to lighten my assignments; Scout leaders discouraged me from going on field trips; at the amusement park a manager refused to let me ride the rollercoaster. "You better not try that, dear," I heard again and again. "Wait over here ... We'll do it for you ... That will be easier ... safer ..." Past success and present abilities counted for nothing. The refrain was endless: "You can't do that. It's not for you. You're blind."
Achievement was the key, my parents assured me. If I studied hard and seized every opportunity, I would carve a place for myself in the world. I came to believe that, if I was enough of a success in life, someday people would see me fully. They would know that blindness did not define me, that it was just one aspect of who I was, like being female and American. The receptionist showed me that no achievement would ever free me from the humiliations of prejudice.
As a student on a liberal campus in the 1960s, I answered the call to collective action many times. I marched on the Pentagon with a placard that demanded: "BRING THE BOYS BACK HOME!" I tutored underprivileged children and visited patients who languished on the state psychiatric wards. I knew I was blessed to have grown up with a loving family in a clean, comfortable suburb. Out in the Real World were millions who did not enjoy my good fortune. My generation was committed to change all that. We would shatter the bulwarks of inequality and create the world that ought to be.
While I sang "We Shall Overcome" and added my voice to the chorus that called for "PEACE NOW!" I was fighting an endless series of lonely private battles. An art professor barred me from his studio sculpture course; a doctor in the campus clinic refused to sign my routine health form for a trip overseas; I was turned down for participation in a winter term project. It was because I was blind, they said. That was all the reason anyone needed.
Those moments of exclusion folded into a predictable pattern. Each fresh incident evoked the memories of a lifetime, and each struggle honed my skills at fighting back. I learned to bargain, to build an argument, to go over heads. In the end, after varying degrees of stress and psychic pain, I usually prevailed. Doors opened—tentatively, grudgingly—but once I crossed the threshold I had another chance to prove myself capable.
Though I won countless battles, the war dragged on. Sometimes I was forced to concede defeat. I had to take a different class or find an alternative winter term project when those in charge refused to yield.
It never occurred to me that the roadblocks I dealt with were symptoms of a pervasive social injustice. Terms such as “racism” and “capitalist exploitation” were part of my vocabulary, but I knew no word for the exclusion I encountered because of my blindness. It seemed deeply personal, a shameful burden unique to my own experience. All of my friends were sighted. I had never had a blind mentor. In all my life I had never met a blind teacher, a blind shopkeeper, a blind banker, or even a blind homemaker raising children. As far as I could tell, blind people vanished into the stratosphere when they grew up. I was determined to share in all the challenges and bounty of life. I wanted to make meaningful contributions in the world. But I felt that I was embarking upon a solo journey. Whatever I chose to do, I would be a pioneer.
After I graduated from college I earned a master's degree in social work. I had built a strong résumé, laced with volunteer work and summer internships in addition to my graduate training. Nevertheless, when I set out to find a job, the doors were bolted shut.
My résumé won me a series of job interviews. Over the phone prospective employers were cordial and enthusiastic, but the tone turned cool the moment I walked through the door. Sometimes a position that was available that very morning miraculously had been filled at noon. Sometimes the interviewer served up advice. At the large agencies I was told to try a smaller place where the staff could give me the special attention I surely would need. At the small agencies I heard, "You should apply at one of the big places that have a lot of different programs; maybe they can fit you in somewhere." The social work director at a renowned private hospital declared, "Because of your handicap I'm not about to hire you. Why should I hire someone with a problem? I have dozens of other applicants to choose from."
As the months passed, all of my classmates found work. They became self-supporting adults, respectable members of the community. I was still living at home, sending out résumés, and growing more and more desperate. I began to understand that the treatment I received had nothing to do with my personal failings. It was a generic response to my blindness, not unlike the rejection African Americans historically experienced when they applied to an all-white college or sat down at a whites-only lunch counter. I was dealing with blatant discrimination. Surely there were people who could help me. I called the ACLU [American Civil Liberties Union].
The woman who answered the phone listened carefully, then passed my call to someone else. "We've never had a situation like this before," I heard, and my heart sank. I hung on as my call was handed on yet again to "someone who will know."
"I'm sorry, but we can't help you," the voice of authority told me at last. "If it was discrimination because of race or religion or gender, we could take it on. But there aren't any laws about discrimination on the basis of disability. If you want help from us, you'll have to change the law first." I went back to my résumés and my interviews. I was a pioneer, braving the roadless wilderness.
After months of searching my persistence was rewarded at last. I found a position at a community mental health clinic in a settlement house on New York's Lower East Side. It was an ideal job for me, allowing me to work with a wide variety of clients. My colleagues were warm and welcoming, and I quickly became a full-fledged member of the team. I rented an apartment in the city and flung myself into my exciting new life. But I couldn't forget the ordeal of discrimination that I had endured. When a financial crisis threatened to close the settlement house and throw me back into the job market, I felt a clutch of dread. I had been lucky to find a place where I was accepted and valued, but I knew what the world could deliver.
I had been living in New York for two years when I crossed paths with a blind acquaintance from my childhood. We had attended the same summer camp for blind children, and now she too was living in the city. Like me, she had encountered a wall of discrimination when she looked for a job after college. Now she had banded together with a group of other young blind professionals to write an amendment to the New York State Human Rights Act so that it would cover disability as well as race, religion, and gender. I remembered my call to the ACLU and pitched in to help. Here was my chance to change the law!
It was thrilling to work with others who shared my perspective. Inspired by the spirit of the Sixties, we had joined forces to make a difference. Our amendment passed in the legislature and became part of the law in New York State. A few months later, the state law was superseded when the US Congress passed the Rehabilitation Act of 1973. Its groundbreaking Section 504 forbade discrimination against people with disabilities in any program that received $2,500 or more per year in federal funds.
What had happened was extraordinary. Hundreds of people with disabilities—blind people, deaf people, polio survivors, people with cerebral palsy—had pooled our strength and changed the world. We had won legal protections that never existed before. I stepped back in relief. I didn't want disability rights to become my life’s work. With the passage of the new laws I felt free to move on.
Of course, it was naive to imagine that Section 504 would vanquish discrimination. Yet I believed that change would be powerful and clear. Blind students would no longer be forbidden to take the classes they wanted, and blind job-seekers would have recourse if a prospective employer said, "Because of your handicap I'm not about to hire you." Busy with my career and my circle of friends, I didn't try to learn whether the law was having an impact. I wanted to believe in good news.
Eventually I left my social work job and moved to San Miguel de Allende in Mexico to try my hand at writing. I would stay for a year, I told myself, but I stayed for five years altogether. I wrote a young-adult novel, Belonging. I sent it off to make its way in the world, and one day I received a letter saying that it had been accepted for publication. I went to The Dial Press to have lunch with my editor.
The women's movement of the early Seventies coined the phrase, "The personal is political." What could be more personal than the desire to visit the ladies' room discreetly and with dignity? In that moment with the receptionist at Dag Hammarskjold Plaza, my dignity was stripped away. The receptionist's assumptions about who I was and how she should treat me sprang from cultural beliefs about disability that stretch back before the dawn of history. I came to understand that every minute of every day, far worse scenes played out all over the nation and across the globe.
The truth did not come to me with a blare of trumpets and a crash of cymbals. It seeped in drop by drop as the years passed; everyday life brought reminders and reinforcements I could no longer ignore. I realized that laws were a splendid beginning, but they were not enough to change people's minds and hearts. Neither could achievement free me or any other person with a disability from the clinging web of prejudice. Discrimination would persist in myriad forms unless we worked together and assailed it with inexhaustible resolve.
I never wanted to make disability rights my life’s work, but step by step I waded into activism. Turning away was no longer an option. There was so much to be done that it would take millions of people and more lifetimes than I could count.
I became a committed member of the National Federation of the Blind, an organization that advocates for the full participation of blind people in all aspects of life. We fight for equal opportunities in education and employment, for access to technology, for the right of blind parents to raise their children, for accurate portrayals of blind people in the media. We work to educate the public about the abilities of blind people and the contributions we can make when we are given a chance. To me one of our most crucial activities is the mentoring of blind young people. We try to teach them that they can walk with confidence, that they can grow up to carry all the privileges and responsibilities of adulthood, that it's perfectly respectable to be blind.Discrimination still stalks the workplace, but opportunities have opened in fields as diverse as teaching, chemistry, and computer science. Little by little, anti-discrimination laws and public education are making inroads. And today when I visit the offices of a publisher, I don't have to ask where the ladies' room is. On the wall outside each restroom door is a Braille sign clearly marked "MEN" or "WOMEN." Discreetly and with dignity, I can choose the right door.