The Alan Review
Current Editors
Steven Bickmore sbick@lsu.edu
Jacqueline Bach jbach@lsu.edu
Melanie Hundley melanie.hundley@vanderbilt.edu
Volume 27, Number 1
Fall 1999


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THE LIBRARY CONNECTION

John Noell Moore, Editor, The College of William and Mary
and Jacob Gapko, University of Wisconsin, Eau-Claire

Reflecting over the past months on this space in The ALAN Review and on the nature of libraries and connections, I have often recalled my fascination with the first library to which I had a real connection, the library at Montvale School in rural Bedford County, Virginia. Montvale School included grades one through twelve; we had no kindergarten. Most elementary classrooms were housed in white frame buildings near the red brick high school, and somewhere around the time of the fourth grade, we began to make a once-a-week pilgrimage to the high school library.

We were always aware of the library in that school. Each morning our bus brought us to the front of the high school, and ascending its concrete steps, we arrived in the combination auditorium, gym, and lunchroom; classrooms lined each side of this big space with its polished hardwood, and straight ahead loomed the massive stage with its maroon curtains. A room in the right corner near the front door served as the main office from which Hugh D. McKee, the principal and a bear of a man with only one arm, governed the life of his school. A small storage and supply room occupied the left corner. Later, when the school became overcrowded and just before its student body was assimilated into a big new county school thirty miles away, this storage space became the place where Orrin S. Rhudy, our mathematics teacher, met with us to explore the joys and sorrows of "higher" math.

The first room on the left of Montvale School's auditorium was the library where Mrs. Margaret Garrett, the school's librarian, assistant principal, and biology teacher, helped me make a library connection that has shaped my love of books, ideas, the scholarly life, and the teaching life. Even now, many university libraries away, I recall the particular connection that I established on my first visit to that library. Entering the door, I sat down at a table to my left and scanned the shelves in front of me while we waited for Mrs. Garrett to give us our orientation to the library. On the shelf that rose tall above the table tops I spotted Carl Sandburg's multi-volume biography of Abraham Lincoln with its salmon covers. I knew at that moment that I had to read all those books, that I wanted to know how so much could be written about one person. That collection challenged me, and it drew me repeatedly to that tall shelf when my class would come to the library. I admired the titles of the volumes: Abraham Lincoln: The Prairie Years (two volumes, 1926) and Abraham Lincoln: The War Years (four volumes, 1939). I was too short to reach them, but I gazed longingly up at them on subsequent visits. Years later, I would feel the same sense of amazement as I gazed up at the face of the Civil War President when I first visited the Lincoln Memorial in the nation's capitol.

When Mrs. Garrett began her orientation to the library, she didn't mention the Sandburg books, instead pointing us towards shelves on which we might find books that we could read for reports and for our pleasure. She was all business, bigger than life, stern, and, for me, unapproachable. Each time I visited the library, I was constantly aware of her presence, of my decorum in her presence; it was completely clear to me that the Montvale High School Library was her library, and that we were there to make "appropriate selections," as she would often invite us to do. When I finally got up my nerve to ask her about those magnificent books on the top shelf, she told me that they were beyond me, and that I could read them when I was older. I did get older, but I did not read Sandburg's Lincoln, because I had embarked on other journeys, piloted other frigates through the seas of sound and sense. I fought the wars in Homer's Iliad and traveled the seas in Odyssey, and I eagerly lived the adventures in Walter Farley's Black Stallion books, the closest thing that the Montvale Library offered in the way of young adult literature. Although I never took the Lincoln volumes from the top shelf and carry them home, I have never forgotten their power in connecting me to that small but wonderful library.

Years later these childhood memories flooded over me as I made another library connection, this one in Eudora Welty's One Writer's Beginnings. Welty describes her fascination with the Carnegie Library in her hometown of Jackson, Mississippi, and with its librarian, the memorable Mrs. Calloway. This commanding woman "ran the library absolutely by herself, from the desk where she sat with her back to the books and facing the stairs, her dragon eye on the front door," (Welty 32). The image of Mrs. Calloway's eye suggests that, like the powerful winged and scaly serpent of myth, she is guarding a treasure, her hordes of books. Her check out rules embellish the image: "You could take out two books at a time and two only; this applied as long as you were a child and also for the rest of your life, to my mother as severely as to me," (33). Welty remembers devouring books, wanting to read them instantly because her "only fear was that of books coming to an end," (33). As my own life has filled up with the magic of books and with many library connections, I have come to realize that there will be no end of books, but there will be an end to me. I cannot read all the books I want to readÑnot even all the books that inhabit the shelves in my study.

The point of my storytelling (I am a Southern boy and cannot resist it) is this: In this space of The ALAN Review, I invite librarians, teachers, and others who are passionate about books and libraries to join me in making connections with each other, with young adult literature, and with young people. I'll suggest a few possibilities for these links: We might connect adolescents and the young adult literature they choose to read from our library shelves; librarians might submit descriptions of library programs that encourage, support, and reward the reading of young adult literature; we might consider the relationships that exist or might exist among young adult literature, the curriculum, the library, and the classroom. We might also consider how librarians work with preservice teachers, and preservice librarians to encourage them to build young adult collections.

I invite readers of The ALAN Review to write to me and share the possibilities of ways in which we can create a space in "The Library Connection" that will serve us as scholars, professionals, teachers, students, administrators, and readers. We might co-author an article, or use the space to publish an article on the connections we make with young adult literature in our teaching lives.

For the inaugural contribution to "The Library Connection," I am happy to introduce the work of Jacob Gapko, an undergraduate student at the University of Wisconsin at Eau-Claire. Gapko, who is studying physics and library science, and has been a summer intern at the National Aeronautics and Space Administration (NASA) Goddard Space Flight Center where he worked in the technical library.

Gapko writes from a unique perspective about literature that deals with Duchenne muscular dystrophy (DMD): he has the disease, which affects about one in every thirty-five hundred boys and young men. Gapko writes with a sense of urgency; young adults need to be aware of the existence of this disease, he insists, and they should know how boys and their families cope with it. DMD affects the pelvic and shoulder muscles, beginning with the pectoral muscles; boys and young men inherit it as a sex-linked recessive trait (Webster's Tenth Collegiate).

Gapko invites us to connect to the books about which he writes as we consider the impact of the disease on young adults and their families. Librarians might connect students and teachers to these books by including the books in their young adult collections and by featuring them in book displays, in their library newsletters, and in other communications they have with their library's constituencies.

Work Cited by Moore

Welty, Eudora. One Writer's Beginnings. New York: Warner Books. 1984.

 

Where Hope Still Shines:
Books About Adolescents With Muscular Dystrophy

Jacob Gapko

Why are books about people with muscular dystrophy relevant to young adults? If teenagers have not been exposed to muscular dystrophy through events such as the Muscular Dystrophy Association annual telethon, then books that deal with the subject can offer them an expanded world view. Often teenagers encounter persons in wheelchairs who suffer from muscular dystrophy: sometimes they may stereotype these young people too hastily. For example, when teenagers see me in my wheelchair, I know they wonder why I am in a wheelchair. They rarely ask me, though something seems to make them uncomfortable in this situation. Books that deal with young people who have muscular dystrophy can help teenagers make a connection: books can break down the barriers of silence and show teens that outward appearances do not always reflect the spirit of the person inside.

The books which I introduce in the following pages all deal with DMD in young males; though they span more than twenty years, they share some common characteristics. All of them tend to be upbeat while they deal with the realities of muscular dystrophy. The emotions of the disabled characters are captured with clarity, even though they are not the narrators of the fictional texts. Some disabled persons do not have many friends; the friends they do have mellow them and help them cope by caring deeply for them and being willing to go to great lengths to be helpful. For example, in the novel Under the Shadow, friends get a horse for a disabled character, and in the nonfiction Will to Live, friends motivate a disabled character to follow an exercise regimen.

In the fiction which I discuss the narrators are young adult females who seem to help the males with muscular dystrophy deal with emotions that need to be articulated, emotions which male characters may not be able to articulate.

The most important differences in these young adult books reflect the involvement of parents, which runs the gamut from being overly involved to appearing only as consultants. For example, in Mame Farrell's Marrying Malcolm Murgatroyd (1995), Hannah's parents seem at times too entangled in their daughter's life. Conversely, in Anne Knowles' Under the Shadow (1983), Cathy's parents are much less involved, but there is one advantage to this. When her parents take a limited role the interaction between Cathy and Mark takes center stage and readers can focus on their friendship and their emotional lives. In the nonfiction books parental involvement seems more realistic; more often than taking either of the extreme stances, parents seem to find the middle ground necessary for them to go about their own lives while dealing with the disease.

In Marrying Malcolm Murgatroyd, Hannah Billings has been standing up for Malcolm Murgatroyd for many years. Malcolm is an outcast in school; he doesn't dress according to current fashion, has few friends, and common sense is not his long suit. Malcolm and Hannah have grown up together, and they have kept it a secret that their parents are best friends. Hannah's little brother Ian has muscular dystrophy, and ever since he has been confined to a wheelchair, Malcolm has been the only person who can cheer him up.

When Hannah is given an assignment to write her autobiography, her secret relationship with Malcolm becomes a problem. She can earn extra credit if she includes pictures with her assignment; however, as she goes through her pictures she discovers Malcolm in almost all of them. If she uses them, she will break her promise and be laughed at by all her friends. The conflict comes to a head when Ian is rushed to the hospital and Hannah discovers how much Malcolm has learned about muscular dystrophy and how much he can help her deal with Ian's disease. This knowledge inspires her to rewrite her autobiography and to include Malcolm in it.

Under the Shadow is the story of Cathy Marshall and her friendship with Mark Anderson, who has DMD and is confined to a wheelchair. She meets him when her family moves to the country to live on an estate left to them by a relative. At first, Cathy is surprised that Mark is not a "normal" person. Their friendship begins timidly, but in time they become close.

Mark is often unhappy, and when Cathy learns that he loves the freedom of horseback riding, she realizes how she can help him to be happier. When Cathy discusses this realization with her father, he suggests that he can get a horse so that Mark will be able to ride. The young people's relationship is reciprocal; Cathy enjoys hearing Mark's stories about the Beamasters--part fact, part fiction--in return for helping to bring him happiness through horseback riding.

In a review of Under the Shadow, Caryl Dresher (1984) says that she would not recommend this book because of the "fulfill-the-dream-of-a-crip" plot, and because the story treats horseback riding as a "once in a lifetime" wish. Dresher finds the book filled with "pity and two stereotypical embittered disabled people." The only positive element Dresher finds in the book is Cathy's honest and non-stereotypical encounters with Mark (18).

Dresher's review troubles me. As a disabled person, I find her comments about "embittered disabled people" too harsh. Dresher doesn't seem to understand that sometimes people with disabilities may seem to be embittered but their emotions are more periodic than systematic. I do not see Mark as embittered: rather, he shows his anger alongside happy feelings when Cathy is around. Not being able to do what one's peers can do is difficult for teenagers to accept, and some people like Mark show their anger in living color. Dresher's opinion that horseback riding is treated as a "once in a lifetime" wish in the book is incorrect. If that were the case, then Mark would have only gone horseback riding once. However, he rides at a center for handicapped children and also many times at the Beamasters' estate where Cathy lives.

In the autobiography, Will to Live (1979), Hugh Franks tells the story of how he met Robby, who suffers from Duchenne muscular dystrophy, and how he subsequently married Robby's mother, Judith. Franks fought Robby's disease with Judith and Robby. The picture that specialists paint for Hugh, Judith, and her son is bleak: Robby will be confined to a wheelchair, and by the age of twenty he will be dead.

Hugh refuses to give in to the disease; together he and Robby fight by following exercise routines and by using special equipment. As Robby grows physically weaker, Hugh and Judith push him to develop his intellectual abilities. In time, Robby graduates from a preparatory boarding school for the handicapped where he has gained both independence and compassion. When he moves to college, Robby uses a power wheelchair that gives him greater independence than his manual wheelchair has provided. Throughout the book, Robby's love for sports, particularly soccer, helps him cope with his disease. The soccer team that he follows seems to be one of the few things in his life that keeps him going.

Will to Live takes the reader through all the emotions that a boy with Duchenne muscular dystrophy and his family encounter, ranging from depression to acceptance. As a handicapped person, I was disturbed by the fact that Robby was not told immediately that he had DMD. After thinking this through, I realized that at the time the book was written not much was known about DMD. So, maybe it was best not to give it its medical name, but instead to label Robby's disease "lazy muscles." Of the books available about muscular dystrophy, this one examines some of the more unsettling realities of life with the disease--prognosis and the challenges of survival.

In the nonfiction book, Move Over, Wheelchairs Coming Through (1985) Ron Roy examines the lives of six young adults who are confined to wheelchairs. Words and photographs illustrate a typical day in the lives of these young people, one of whom has DMD. Roy's biography follows this young man's waking hours, his time at school, and his return home. When he is out in public, he often has to deal with people staring at him, but in his own neighborhood the children readily accept his disability. Actually his disability turns out to be an ability; he is pictured pulling the other children who are on roller-skates.

In his forward to Will to Live, Sir Richard Attenborough, President of The Muscular Dystrophy Group of Great Britain, remarks on difficulties of facing a life with DMD: "Nothing could be more frightening for a parent than to be told that your child will slowly wither before your impotent gaze and fail to survive his teens. You, I, any mother or father, could surely be forgiven for despairing totally in the face of such cruel prognosis." All of the books about which I have written shine a light through the despair that Attenborough describes, and that light offers the promise of hope and understanding for young men with DMD and the people in their world.

Works Cited by Gapko

Dresher, Caryl. "Under the Shadow (book review)." Interracial Books for Children Bulletin 15 (1984): 18.

Farrell, Mame. Marrying Malcolm Murgatroyd. New York: Farrar, Strauss, Giroux, 1995.

Franks, Hugh. Will to Live. London: Routledge & Kegan Paul, 1979.

Knowles, Anne. Under the Shadow. New York: Harper & Row, 1983.

Roy, Ron. Move Over, Wheelchairs Coming Through! New York: Clarion, 1985.


John Noell Moore, editor of The Library Connection, is an Assistant Professor of English Education at The College of William and Mary in Virginia. He is the author of Interpreting Young Adult Literature: Literary Theory in the Secondary Classroom (1997), Portsmouth, NH: Heinemann, Boyton/Cook.

Jacob Gapko, who contributed "Where Hope Still Shines: Books AboutAdolescents With Muscular Dystrophy," is a studying physics and library science at the University of Wisconsin at Eau-Claire.

Copyright 1999. The Assembly on Literature for Adolescents of the National Council of Teachers of English (ISSN #0882-2840). Permission is given to copy any article provided credit is given and the copies are not intended for resale in any form.


Reference Citation: Moore, John Noell and Jacob Gapko. (1999). The library connection, Where hope still shines: Books about adolescents with muscular dystrophy. The ALAN Review, Volume 27, Number 1, pp. 52-54.

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