Future Reflections Winter/Spring 2000, Vol. 19 No. 1

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A Life Sentence Repealed: A Blind Multiply Handicapped Student Achieves Functional Braille Literacy

by Kevin C. Murphy

Fourteen, blind, and multiply handicapped since infancy, Kevin knew about letters. Letters excited him in the way angels, UFOs, ghosts, and monsters excite many of us—lots of excitement, little practical value.

The Guru’s of Madison Avenue skillfully generate ungrounded excitement about products so that people will buy, well, just about anything. With kind intent, Kevin was manipulated in that way. His favorite television programs, “Sesame Street” and “The Electric Company,” mimicked Madison Avenue’s methods so as to promote every child’s desire to read.

Kevin was destined either to read Braille, or not read at all. Yet by 1981, “Braille” for Kevin was a mispronunciation of “fail.” Each class was preceded by dread, overshadowed by fear, and remembered in confusion, until, as each class ended, it changed to relief mixed with dread of the next Braille encounter.

Finally, in December of 1981, after six years of effort, his teachers abandoned all efforts to teach Braille to Kevin. I shared my son’s sense of relief. I shared the teacher’s assessment that Braille literacy was a futile quest for a child as damaged as mine. Yet, a distant part of me was outraged by the life sentence of illiteracy that was now to be imposed upon Kevin. The inner accountant in me hesitated before posting cost and cause to Kevin’s account in the way all had agreed it should be done.

I was a parent, aged 33. Both Kevin and Heather, my adopted daughter, were multi-handicapped and blind. No fear, no inordinate concern about blindness gripped me at that late stage. My children were who they were, and I saw nothing in need of fixing—except, perhaps, the society that shunned them.

Braille was a different matter, a less familiar thing. I nursed a parent’s terror of an imagined cult of Braille experts so exotic, so beyond my experience, that I might harm my son by even approaching Braille without years of study. But what harm could I do now? The legacy of our attempt to help Kevin make sense of letters, of Braille, was discarded as junk, left in a place not to be revisited. I could do no harm. I was free to look around for answers to questions I’d long contemplated.

 I wondered if Kevin could at least learn that symbolic languages exist and operate. He might not read a book, but he could understand how others are able to do it. Many who have never piloted aircraft nevertheless understand something of how they work. I cannot lie into existence the story of myself as the outraged parent out to show the experts! You know the script: “They told me he’d never play the piano again! Well, I showed them!” Alas and a-lack, ‘twas not that way. The logic, opinions, and pessimism heaped on Kevin by experts merely made my own contribution to his burden less conspicuous.

I searched, but only for a way to help Kevin keep what he had. I wanted simply to add some garnish, to make his life less confusing to him. In that winter month, in that frame of mind, I mutilated Christmas toys. Little building blocks became Braille cells to build words and sentences on the surfaces of toy boards meant originally to serve as front lawns for little toy houses and villages. I fashioned my first Tack-Tiles®.

My limited imagination—and even more limited trust in my child’s skills—left me poorly prepared for the success of my first session with Kevin and Tack-Tiles®. The session began, I’m sure, with as much failure as any of his Braille lessons. Yet, if failure’s quantity revisited him, its quality in that lesson was a stranger to him. In that lesson, failure meant only that I would deny him the pleasure of confiscating my Tack-Tiles®, and the opportunity to lodge them onto his own board. Here, he viewed Braille’s challenge as a contest of human beings and human enterprises much more to his comfort and liking. That made a profound difference. He allowed me to tease and fence with him around his knowledge and ability to use this new learning tool. He was so focused and on-task that I began to wonder if I was the one who had an attention disorder. The fact that Kevin’s instructor—his father—had not the beginning of an idea how to proceed, helped immensely. Kevin and the Tack-Tiles® took complete charge. Success followed success in the wake of success.

 For reasons too bizarre to go into here, Kevin was not in school throughout 1982 and 1983. (The very curious should read Murphy v. Timberlane Regional School District. It went twice to the First Circuit Court of Appeals, fall 93 and spring 94. The U.S. Supreme Court denied Timberlane’s petition for a writ of certiorari.)

I had no support from any teacher of the visually impaired. I grew fearful, this time, of losing what we’d gained. Over Kevin’s protests, I put the Tack-Tiles® away in mid-1982. He would see them again in 1985. In 1984, Kevin entered a class made up exclusively of mentally retarded adolescents, all of whom were sighted. I showed my handmade Tack-Tiles® to the staff, but my “show & tell” sparked minimal interest. I put Kevin’s Tack-Tiles® away for another year.

In 1985, a teacher’s aide was hired to work with Kevin. She had only a high school diploma, but she cared a lot about Kevin. She telephoned me quite unexpectedly one day. Very frustrated, she said, in effect, “I’ve been charged to care for this damaged, but in many ways brilliant, young man, who has nothing in common with his classmates, doesn’t belong in this class, and desperately needs to be challenged. Please tell me how to help him?”

I invited Robin that weekend to watch a videotape of a 1982 Tack-Tiles® lesson. She left with my handmade set in hand. After a few successful weeks, she contacted the local itinerant teacher for the visually impaired. Marina, who’d not seen Kevin since he was four, shared Robin’s excitement over what Kevin had accomplished. Over the next year, Marina guided Robin’s efforts, blending Tack-Tiles® with the Mangold Braille Series, to move Kevin along. He eclipsed the first year of workbooks in six months. Since Kevin’s Braille instruction was added after Marina’s schedule was set, one-hour bi-weekly was all Marina could secure for him. Yet Robin’s innate skill in using Tack-Tiles® kept pace with Kevin’s learning.

Robin left at the end of 1985 to pursue a degree in special education. None of her successors had any sincere interest in working with Braille. Marina struggled valiantly, visiting sometimes weekly, year after year, yielding only when Kevin was summarily ejected from school in 1987, on his 21st birthday.

Kevin is twenty-six at this writing. He’s at the Florida Lions Conklin Center for the Multi-Handicapped Blind in Daytona Beach studying Braille and enjoying the absence of his parents; says he’s not coming home—he’s probably right. He sent us a letter this week, the first we’ve ever gotten from him. His name, (two r’s in Murphy), the alphabet (two g’s, no f), and “I love you.” He knows how to Braille this. His mother, siblings, and I can read it and write back to him on a Perkins Braille writer. (Somewhere along the way, we accidentally picked up some Braille.) The silly little things I mutilated so long ago have now led to the greatest literary discourses my world has ever known. The ability to process three to four hundred words a minute will never be Kevin’s; Braille literacy, however, is forever his.

 

From the Editor: Kevin, the student described in the article above, is now, at 31, a young man approaching middle age. He lives and works in Daytona Beach, Florida, with supported living assistance from the Florida Lions Conklin Center for the Multi-Handicapped Blind. He has his own apartment in a regular apartment complex, and once a week someone comes over to help him cook and freeze meals for the coming week.

 The support also means that if he wants, for example, to go to a restaurant in an area unfamiliar to him, he can call the Conklin Center and ask the Orientation and Mobility instructor to help him get oriented. Kevin supports himself (and is earning Social Security credits) with a packaging and assembly job at Metra Electronics. He still sends his parents notes (well, mostly Christmas cards) in Grade 1 Braille. He also uses Grade 1 Braille labels on all sorts of personal items (C.D.s, tapes, etc.) in his apartment.

Kevin, the father and author of this article, went on to develop and market the Tack-Tiles® system, which has been sold all over the country and in 16 foreign nations. For more information about Tack-Tiles®, contact Kevin Murphy at Tack-Tiles® Braille System, P.O. Box 475, Plaistow, New Hampshire, 03865; (800) 822-5845; <braille@tack-tiles.com>; <www.tack-tiles.com>.

 

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