Living in the State of Stuck (How Assistive Technology Impacts the Lives of People with Disabilities) by Marcia J. Scherer, PhD, is one of the most informative, most realistic and best-written books on disability issues related to individuals with spinal cord injuries (SCIs) and cerebral palsy (CP) that I have read in 28 years as a disability advocate and journalist.
For me, the book has two messages:
The first message is that SCI is not just a physical condition, but one that affects the whole person. The author provides in-depth psychological and personal insights from her subjects—Jim, Maggie, Brian, and Chuck—on their physical challenges, their internal psychological battles, and their struggles to be included in society. Their stories reveal complex human beings of many moods. There are no supermen and superwomen in this book.
The second message is that how well one accepts life with SCI affects the impact that assistive technology (AT) has on their lives. Readers will understand the significance of matching the right technology with the user because the wrong match has no benefit. Readers will also learn that there are people with disabilities who do not like AT. I invite the reader to learn their reasons.
Scherer, a certified rehabilitation counselor, also takes the “long view” of her subject, looking beyond her four informants to the general population of those with SCI. “Due to the nature of the primary causes of traumatic spinal cord injuries,” she writes, “statistics show that men are involved at a rate four times that of women. Other data from the Spinal Cord Injury Statistical Center at the University of Alabama at Birmingham (2000) indicate that 53% of SCIs occur among persons in the 16-to-30 years age group and the average age at injury is 32.6 years.”
I have never read a better description of the various C-1-C-8 levels of SCI and the independent and dependent functions a person with SCI performs at the different levels. Scherer’s definitions of terms such as tetraplegia, paraplegia, and hemiplegia leave the reader with a precise picture of a person with one of these conditions. And she does an admirable job outlining the causes of SCI, be they pathological (due to disease processes) or traumatic (injury).
One of the most important sections of the book covers The Desirability of a Model for Matching Person and Technology. The factors that influence the use, or non-use, of these products are:
• The cognitive ability of the user
• The desire and expectations of the user
• The environment where the equipment will be used
• The support provided by fellow employees and family
• The cost of the equipment
• The function of the equipment and the ability to expand it
All of these factors must be considered when buying AT products, Scherer stresses. She underscores this point by criticizing rehabilitation situations where technology was purchased without even consulting the user. I am glad Scherer points these situations out and I hope her book contributes to the demise of this inexcusable practice.
The book describes many of the AT products available for people with SCI, including such items as personal care devices, seating and mobility aids, transportation aids, communication systems and devices, technologies for blindness and low vision and for people who are either hard of hearing or deaf. Appendix B provides a checklist for AT evaluation for selection.
Chapters such as Struggles and Strivings and Rehabilitation Success: The Relativity of Theory speak to the many challenges and policies facing people with disabilities and policies that affect them. The issues discussed in this book are real and Scherer pulls no punches in her frank presentations and solutions.
In the next edition of this book (or in a new book), I would like to read about people with SCI using speech recognition software, experimenting with a robotic arm, discovering the power of eye gaze technologies, discovering the benefits of telecommunications, and more on telecommuting in work areas.
Living in the State of Stuck is about including people with disabilities in their communities. It is a must-read for people with SCI or CP, their families, employers and rehabilitation professionals who must work as a unit to make inclusion work.
Living in the State of Stuck is published by Brookline Books in Manchester, NH and costs $30. For information dial 1-800-666-BOOK.
John M. Williams has been writing about assistive technology for more than 25 years. A sample of his book Assistive Technologies: Creating a Universe of Opportunities for People with Disabilities can be seen at www.atn-ctcf.org.
