Awakening to Disability - Nothing About Us Without Us

Review courtesy of Ability Network, Spring 1998
Canada's Cross Disability Magazine
Review by Lucia Dutton, Executive Editor

This is one of the best general, all purpose books I've read about disability. It tells us what everyone should know about disabilities in general, while providing much specific information at the same time. The outlook and the attitudes embodied in the book are both positive and universal. As someone who has lived with MS for many years, the author knows whereof she speaks.

"'Piss on pity' is the battle cry of persons with disabilities heard around the world"

As a United States writer, most of the statistical and/or other information is based on the experience of disability in the US, but the author has traveled to Scandinavia and Canada and is able to provide a perspective on disability that extends well beyond her country. Yes, she is quite aware of Canada, and in some areas gives us better marks than we deserve. Vancouver's transportation system, for example, "is considered one of the most progressive in all of North America." This is good news. The problem is that she assumes that this situation, along with some others she mentions, is, at least to some degree, true right across Canada. If it only were...

The book covers a wide range of topics including, but not limited to, visible and invisible disabilities, chronic illnesses, women and disabilities, accessible housing, transportation, attendant care, aging, sex, and suicide. She deals with disability as a human constant which affects each and everyone of us at some time in our lives.

According to the latest US census, some 50 million Americans have disabilities or about twenty percent of the population. The author estimates that if you include in this number the elderly, pregnant women, individuals who are temporarily "infirm" or sick, the injured, infants and children, you are probably talking about more than fifty percent of the population.

"...an accessible, inclusive, humane society is the responsibility of everyone..."

Karen Stone has an excellent chapter on accessible housing. Her idea, embodied in the practices of most Scandinavian countries, is that housing should be both integrated and universal. Integrated means that we shouldn't have housing complexes designed just for the disabled, the elderly or the poor. Housing should be designed so that everyone can live together. Universal means that all housing should be accessible at least to the extent of providing two essentials: no-step entrances and doors that are 32 inches wide or wider. As the author points out, not only the disabled would benefit from such an arrangement. It is also a benefit for the elderly, pregnant women, and children. Such housing would result in fewer home accidents, and when accessibility is designed into a building at the planning stage, additional construction costs amount to less than one percent of the total costs. How can we not do this when it is so sensible and so easily done? Why must we always build ghettos for the poor, the elderly, the disabled? It is time to try something better. We would all be better off for sharing the hardships of life together and learning from each other.

"...when men become disabled fifty percent of their marriages break up. For women that figure is ninety-nine percent."

Another chapter of special merit is the one on attendant care. The author refers to institutional or nursing home care as everyone's nightmare...She gives Denmark high marks for "fostering independence by a nationally-supported, in-home attendant service program."

"...never ask an able-bodied person about accessibility"

...Although the subject matter is sometimes difficult, AWAKENING TO DISABILITY is written in an easy to read colloquial style. It gives a good overall view of the current disability situation without going into too much technical detail. As the author herself says, this is a book "about the human aspects of the disability experience." As an added bonus, she mentions many of the most useful books and magazines on disability as she goes along, so that if the book doesn't satisfy your particular needs, you'll end up with a good idea of where to go next. It also includes three appendices on how to make a public event accessible, how to effectively deal with injustice, and questions for discussing sex and disabilities.

Visit Karen Stone's website to read more about her book and her life.