Books can inspire, encourage, educate and — above all — unite people of varying abilities
When I was 3 years old, I was diagnosed with Duchenne muscular dystrophy (DMD), the most common of the nine forms of muscular dystrophy. My parents never hid my diagnosis from me but, besides my parents, the only way I learned more about muscular dystrophy (MD) and its future effects on me was through my observation of other campers at MDA summer camp, beginning at age 9. As a child, I never read a book or story that included a character with DMD and my parents had few resources to share with their friends or me in that regard.
As a college student, I wondered where someone could read about young people like me. I first tried to answer this question in the fall of 1997 while working on my final project for an undergraduate class in young adult literature. I initiated a search for books on MD and then read and analyzed them and their associated reviews.
In stark contrast to the thousands of books describing MD as a medical condition, I found only four books (!) that presented the life stories of persons with MD and explored the insights, social and spiritual development, challenges and personal successes of children and young adults with MD. My instructor, a local children’s librarian, encouraged me to revise my paper and submit it for publication.
But I was a busy college student. In the spring of 1998, I went on a student exchange program to Macquarie University in Sydney, Australia. That fall I applied for a physics internship at NASA (National Aeronautical and Space Administration) through the American Association for the Advancement of Science Entry Point program for students with disabilities. Instead, I was placed in a scientific library where, during the summer of 1999, I utilized my background in physics and library science to create a Web channel for research scientists at NASA’s Goddard Space Flight Center.
When I returned from NASA, I revised and submitted my class paper to the ALAN Review, a journal published by the Assembly on Literature for Adolescents of the National Council of Teachers of English. Where Hope Still Shines: Books About Adolescents with Muscular Dystrophy appeared in the fall 1999 issue of the ALAN Review.
After the article appeared, I thought I’d answered my original question to my satisfaction and moved on to complete my bachelor of science degree at the University of Wisconsin-Eau Claire in 2001, with a major in physics and minors in mathematics and library science.
I immediately enrolled in a master’s degree program at UW-Milwaukee and in December 2002, as a new holder of a Master of Library and Information Science, I began working as a part-time cataloger at the local technical college.
With time on my hands, I once again looked for books on MD. This time I found many more. Numerous new books by and about children and young adults with muscular dystrophy had been published. I decided to create an annotated bibliography of all currently available books in English by and about young persons with muscular dystrophy for use by librarians, educators, health care professionals, families and people within the MD community.
To support my effort, I applied for and received a Carnegie-Whitney Award from the American Library Association to write Children and Young Adults with Muscular Dystrophy: an Annotated Bibliography. This bibliography adds a heretofore unavailable dimension to the discourse on MD, benefiting current and future generations of children and young adults with MD, their family members, friends, classmates and the professionals who interact with them on a daily basis.
Why, one might ask, are books by and about people with muscular dystrophy relevant to children and young adults?
Such books offer readers deep insight, life strategies, resilience and inspiration. While children may be familiar with the physical effects of muscular dystrophy through MDA’s Telethon, books provide rich insight into other aspects of living with muscular dystrophy. Children and young adults know something is different about people with muscular dystrophy — an odd gait or use of a wheelchair — but they’re discouraged from asking why that other person is different or, more importantly, how that person is not very different from themselves. This social conditioning perpetuates a barrier of silence and unnecessary ignorance, even on the part of children and young adults who have the genetic disorder themselves.
Books have the power to break down barriers and show children and young adults that outward appearance does not accurately reflect the spirit and abilities of the person inside.
In an ideal world, persons with physical disabilities would be regarded as people first, with their disability influencing how they cope with activities of daily living rather than defining who they are. But currently, the only way for a person with a physical disability to be seen in this way is not to be seen.
For example, I completed my master’s degree at UW-Milwaukee completely via distance education. For the first time in my educational career, no one knew I had a physical disability. Ironically, invisibility proved liberating — unable to see me, neither my peers nor my professors assumed I possessed inherent shortcomings, excused me from activities or responsibilities, humored me or otherwise isolated me from full participation. In other words, no one stereotyped me as a person with a disability. When my classmates finally met me face-to-face at graduation, there was much surprise to be sure, yet I believe for many there was enlightenment as well. Enlightenment is certainly a better route to understanding than silence or avoidance.
I hope Children and Young Adults with Muscular Dystrophy: an Annotated Bibliography will be a valuable resource for parents, teachers, counselors, librarians and health professionals. Parents of children and young adults with MD can use it to select books appropriate for their children and to recommend books to inquisitive family and friends. Health professionals, educators and librarians can easily select appropriate books to include in library collections or to feature in book displays, newsletters and communications with constituents. Teachers and counselors can connect students and clients with these works by including them in the curriculum, in workshops or as part of therapy.
While focused on muscular dystrophy, readings from the bibliography also can serve as a foundation for a broader discussion about people with a variety of disabilities. As such, it’s my hope that my annotated bibliography will provide a template from which parallel efforts addressing other disabilities can take shape.
Jacob Gapko, 32, lives in Eau Claire, Wis., and is a Ph.D. student in library and information studies at the University of Wisconsin-Madison. He can be reached at firstname.lastname@example.org.