Books September-October 2007

by Quest Staff on September 1, 2007 - 9:45pm

QUEST Vol. 14, No. 5

NOTE: If your local bookstore doesn't have a book mentioned in Quest, usually it can be ordered through the store by providing the author's name, title and/or publisher. Often, books also can be ordered online. Reviewed books are not available through MDA.

Sports and the Physically Challenged: An Encyclopedia of People, Events, and Organizations, by Linda Mastandrea and Donna Czubernat, 175 pages, 2006, $75. Greenwood Press,

If you love watching, learning about or participating in sports, you’ll find something of interest in this encyclopedia. Entries cover champion athletes with disabilities, specialized equipment, organizations and sports ranging from fishing to murderball (quad rugby). Many of the entries read like short articles or stories, providing historical and bibliographic references.

The hundreds of pieces in this volume add up to a very impressive account of the remarkable, imaginative world of sports for those with physical disabilities.

Elegy for a Disease: A Personal and Cultural History of Polio, by Anne Finger, 290 pages, 2006, $25.95., St. Martin’s Press.

This is that rare type of book about living with a disability that St. Martin’s has published several times in recent years — a personal history which is also a literary achievement, richly layered with insights into the psychological, social and cultural history and impact of a specific disability.

Reading Elegy for a Disease is enlightening in every way. Resisting the predictable “elegiac story with its expected arc” from normalcy through crisis to triumph, Finger explores her childhood perceptions of having polio in the 1950s. She juxtaposes those memories with the history of polio and enough information about her later years to show the richness of her life.

Torturous treatments, the effects of disability on girls, society’s expectation of a cure, her own troubled family, her growing political awareness, personal perceptions about disability and their changes — these and hundreds of other factors contributed to the formation of the woman and the writer Finger became. In a style that’s thoughtful, subtle and imaginative, she tells her own story and in so doing, unveils a history of American images and expectations about health and disability.

Quest readers may also enjoy reading two earlier St. Martin’s books, Moonrise and The Book of Kehls. Both are perceptive stories of families affected by Duchenne MD.

The Special Needs Planning Guide: How to Prepare for Every Stage of Your Child’s Life, by John W. Nadworny and Cynthia R. Haddad, 336 pages with CD-ROM, 2007, $29.95. Brookes Publishing,

The authors, both active in national parent and advocacy groups, present financial planning information in chronological format. Besides financial support, the book looks into the emotional, family, legal and health aspects of planning, and incorporates valuable resources and practical solutions.

Using Assistive Technology to Meet Literacy Standards, by Sherry L. Purcell, Ph.D., and Debbie Grant, M.A., 300+ pages per book (three-book set), 2007, $49 per book, $129 for the set, includes PDF on CD. Attainment Co., (800) 327-4269,

These three volumes, geared toward educational levels K-3, 4-6 or 7-12, are intended to help parents and teachers set literacy goals and objectives for students who use assistive technology (AT) in the classroom. They also serve as an IEP (Individual Education Plan) guide.

More than a decade ago, federal regulations mandated that AT principles be applied in classrooms, but exactly how that should be done remains a point of uncertainty for many schools.

The authors note that although “technology” may refer to augmentative communication devices and state-of-the-art computers, it also includes pencil and paper. They emphasize that low- or no-tech options (a slide-on pencil grip, for example) may benefit students the most because they’re more reliable than high-maintenance electronic systems.

Promoting Health Care Transitions for Adolescents with Special Health Care Needs and Disabilities, by Cecily L. Betz and Wendy M. Nehring, 328 pages, 2007, $34.95. Brookes Publishing, (800) 638-3775,

The National Center for Health Statistics reports that more than 9 million U.S. children have special health care needs. This book is driven by the premise that when those children reach adulthood, they often face difficult transitions from pediatric care to adult medical care.

The authors, who have academic and nursing credentials, address those challenges in a text that’s appropriate not only for health care professionals and educators, but also parents.

The solutions they offer include developing workable health care transition plans from start to finish; helping families locate and select adult medical and health care providers; and assisting young people with obtaining accessible accommodations in school and at work.

Real Work for Real Pay: Inclusive Employment for People with Disabilities, by Paul Wehman and others, 368 pages, 2006, $39.95. Brookes Publishing,

This multiauthor book provides chapters on best practices, policies and tools that support positive change in the workplace. It emphasizes moving away from the segregation of workers with disabilities, and using technology, business partnerships and better strategies to increase inclusive work opportunities that can lead to real independence.

We’re all Nuts! by Howard Feigenbaum, 54 pages, 2007, $23.99. BookSurge,

What do you do when FSH muscular dystrophy ends your career in sales management? If you’re Howard Feigenbaum, you go nuts!

With photos by the author, this tale provides kids with a lesson in cultural identity: Goober learns that he’s a legume but still longs to be a nut. Children of elementary school age will learn a little about how peanuts are harvested, packaged and shipped to market, in addition to the messages of self-acceptance and friendship.

101 Ways to the Best Medical Care, by Charlotte E. Thompson, M.D., 214 pages, 2006, $14.95. Infinity Publishing,

Charlotte Thompson, assistant clinical professor of pediatrics at the University of California Medical School in San Diego, unravels the U.S. health care system from the patient’s point of view. A former MDA clinic director and author of  Raising a Child With a Neuromuscular Disease, Thompson is an “old-style” doctor who puts patients first and shares their concerns about today’s complicated, restrictive managed care health system.

Her numbered suggestions begin with “Always insist on the best medical care possible.” She then proceeds to include four reasons to change physicians; questions to ask before signing up with an HMO; how to appeal insurance company decisions; how to obtain high-risk insurance; and much more. Her lists are a great primer for anyone who wants to become a savvy health care consumer, including routine procedures and who needs them, types of medical professionals, common medical terminology, advocacy Web sites, state insurance regulators and medical boards, and many other resources.

Her chapters on special needs care and home health care will be especially relevant to Quest readers. With its amazing wealth of “what-to-do” information, this guide should arm health care consumers of any age and medical condition with tools to make the health care system work for them.

Moving Over the Edge: Artists with Disabilities Take the Leap, by Pamela Kay Walker, 244 pages, 2005, $25. Michael Horton Media,

Walker has lived with polio and a creative mind. In this lively account, she describes how her performance art career, and those of others, developed as the disability rights movement matured.

Her style is humorous and impudent, and filled with tributes to dozens of imaginative artists who communicate to each other and the larger world through theater, comedy, dance, film and all the lively arts.

The Family that Couldn’t Sleep, by D.T. Max, 300 pages, 2006, $25.95. Random House,

The common ground among the players in this novel and people with neuromuscular diseases is that many are adversely affected by ordinary proteins that have somehow gone wrong in their bodies.

The similarities end there. New Guinea cannibals are part of this story, as are mad cows and equally mad sheep. The main characters, though, are members of an Italian family cursed with centuries of fatal insomnia that takes its toll after a few months of increasingly debilitating sleeplessness.

The author, who has a neurological illness, is a seasoned journalist. He takes subject matter that’s often been sensationalized and derives an objective neuroscientific discussion of the prion in all its various and startling guises. This book is informative, gripping and even frightening at times.

Gordon’s Guide to Dude Ranch Vacations & Horseback Adventures, 132 pages, 2007, $8.99. Gordon’s Guide Adventure & Active Travel Publications,

This slick four-color vacation guide provides detailed information about 88 dude ranches and horseback adventures in the United States, Australia, Mexico, Chile and France.

Of the facilities listed, 15 (all in this country) are described as “handicapped-accessible” (check the “Activity Locator” in the back of the book).

Stunning photographs depict all of these outback outfits in magnificent Western environs, providing a full range of ranch-related activities. Some offer horseback options for those who normally use wheelchairs. Readers will want to examine the facilities’ Web sites or contact them directly to determine their degree of accessibility.

Raymond’s Room: Ending the Segregation of People with Disabilities, by Dale DiLeo, 230 pages, 2007, $15. Training Resource Network,

Working in a residential facility for children with autism in 1975, Dale DiLeo was shocked by conditions there — such as a tiny, stifling room housing three residents that was kept locked all night with no staff around. Despite changes in society, DiLeo says people with disabilities are still hidden and legally segregated in housing and employment — primarily by the service system that’s meant to help them.

In this autobiography tracing his career as a disability advocate, DiLeo also analyzes the disability care system and the community integration movement, particularly their failures and abuses. Although his focus is on people with cognitive impairments, everyone should appreciate his account offering insight into solutions that didn’t work and some ideas of what might work better.

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