by Donna W. Hill
From the Editor: Recently I attended an IEP meeting in which a second-grader’s school district decided to discontinue her instruction in Braille. Braille would be too slow. Braille would make her different. The time might come when extended reading would require another look at Braille, but that was in the future, and their concern was for teaching the curriculum in the here and now.
In this article Pennsylvania Federationist Donna Hill talks about what it was like to go through school being expected to depend on vision she didn’t have and the consequences when good training isn’t available to teach and reinforce the skills of blindness necessary to function competitively. This is what she says:
Among my childhood keepsakes is a monaural LP of the musical My Fair Lady, starring Rex Harrison and Julie Andrews. I bought it in sixth grade when my teacher played a different Broadway show every Friday.
Upon first reading the record jacket, I was perplexed. The book and lyrics were written by Alan Jay Lerner; the music by Frederick Loewe. Furthermore, the whole thing was based upon George Bernard Shaw’s play Pygmalion. Three people to write one story? At eleven I already wanted to write a novel and a musical, but I couldn’t imagine not doing it all myself.
That I expected to work alone wasn’t unpredictable. My efforts to fit in weren’t working. Born legally blind from Retinitis Pigmentosa (RP), I was living in a nether world between total blindness and normal vision. I was the first blind child mainstreamed in our local school district. At the time the theory was that visually impaired children who could in fact see print should read print. No consideration was given to the damage and ineffectiveness of this strategy. Large print didn’t work for me because of one of RP’s most misunderstood characteristics: tunnel vision. The bigger the word, the less of it I could see. Long before my reading vision failed completely, I was piecing words together letter by letter. Changes in lighting, such as clouds passing over, left me unable to read anything for several minutes.
At home I held my books up to a bright incandescent light. When I recollect reading print, I can still smell the hot ink and feel the sting in my eyes. Blistering headaches were common. The irregularities in my visual field and the profound differences that lighting made meant that adults were puzzled by my changing visual abilities. I was often accused of faking it.
My greatest solace was music. From age four, I believed I was supposed to do something important and that, whatever it was, it involved music. My musical journey, however, had many pitfalls. In second grade I was selected to sing in the Christmas concert, but I was dismissed before the first rehearsal. The rickety risers on which choirs stand were new to me. Tunnel vision, especially when inappropriately used for mobility and orientation, causes balance problems. My spot was on the third riser. With nothing to hold on to, I was tottering, trying to adjust. The teacher, fearing that I would fall, insisted that I get down. I was sent back to class in tears. The options of either giving me time to get used to the risers or placing me on the ground level weren’t considered.
My early rejection notwithstanding, I studied piano, memorizing the music so I wouldn’t have to keep looking at it. After five years my vision was slipping, and the music I could play was too complicated for easy memorizing. There was no help, however. Shortly after purchasing the My Fair Lady album, I quit piano.
Having given up the thing I loved most, other compromises weren’t as difficult to make. Extracurriculars were out. Constant bullying pushed me away from socializing with my peers. I started making choices about which subjects I would work on and which would fall by the wayside. English was in; history was out. Soon even English fell victim to more demanding reading loads. The fact that I once managed to get on the honor role had more to do with my ability to glean information from teachers and classmates than from reading.
At fourteen I began teaching myself guitar and writing songs. I had been a bit of a poet, and my poetry skills blended nicely with writing lyrics. Aside from one time when our neighbor invited me to sing at the nursing home where she worked, I had no outlets for performing. With the help of Talking Books, I obtained a BA in English literature. Only after college, when I trained with my first guide dog, did I learn about Braille. Teaching myself the basics allowed me to live independently. I started making labels for spices and important paperwork. I Brailled my song lyrics, recipes, and to-do lists. I even made a label and track list insert for that My Fair Lady album. Without real training, however, my ability to use Braille to read age-appropriate material developed too slowly to erase the damage that had been done.
Soon I had to face the reality that I wasn’t prepared for the job market. I always wanted to pursue music, but I was painfully shy and had no experience working with other musicians or appearing in public. My answer was to become a street performer in Philadelphia. The local media noticed, and I started doing my own PR. In my thirteen years as a troubadour, I recorded three albums; appeared at hundreds of local schools, churches, and libraries; and received numerous accolades for my songs for special projects.
Then life stepped in. I was recording my third CD when I found a lump in my breast. It was cancer, but I knew how to survive. After treatment I returned to the studio and finished the project. My husband and I planned to take The Last Straw to Nashville. The masters and cover art were no sooner out the door, however, than I found another lump. The second diagnosis left me financially, physically, and emotionally drained. I had to start over, but how?
A move to the mountains, learning to use a computer with text-to-speech software, and a request from a nonprofit I’d never heard of brought me to my new path. The Performing Arts Division of the National Federation of the Blind (PAD, NFB) asked me to donate my song “The Edge of the Line” to PAD’s Sound in Sight CD, a multi-genre compilation of tracks by blind recording artists. In promoting the CD, which funds PAD’s programs, I realized that the PR skills I had developed in Philadelphia were needed--and not just to help PAD.
When I was a kid, 50 percent of America’s blind and visually impaired children learned Braille. Nowadays, despite strong Braille literacy/independence links, the Braille-literacy rate is only 10 percent. Over 70 percent of working-age blind Americans are unemployed. Of those who work--and they’re successful as lawyers, engineers, mechanics, and chemists and in countless other fields--over 80 percent read Braille. Audio books and talking computers, though irreplaceable and valuable tools, are no substitute for Braille, which remains the only tool offering true literacy on a par with print.
In addition to my volunteer PR work for PAD and the NFB of Pennsylvania, I write for the online magazines Suite 101 and American Chronicle. I cover blindness issues, music, health, wildlife, and knitting, interviewing people using the phone.The project I’ve been working on in some form since elementary school is coming together. My fantasy novel, The Heart of Applebutter Hill, features a fourteen-year-old girl who, like me, is a songwriter dealing with Retinitis Pigmentosa. The book, of course, has music. As for collaboration, well, maybe I’ll get someone else to write the screenplay.