[stylist] Division Member in "The Braille Monitor," Donna Hill

Tue Apr 12 23:11:40 UTC 2011

Braille             Monitor
April 2011

The Record Jacket 

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.

Robert Leslie Newman

President, Omaha Chapter NFB

President, NFB Writers' Division

Division Website

 <http://www.nfb-writers-division.org/> http://www.nfb-writers-division.org

Chair, Newsletter Publication committee

Personal Website-

 <http://www.thoughtprovoker.info/> http://www.thoughtprovoker.info