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In
addition to being witty, readable, and filled with helpful information,
Karen Stone's book, Awakening to Disability is important
for physicians and health caregiversforthree main reasons:
a) It introduces in a very human way the disability community,
which includes patients, acquaintances, friends, strangers, clients,
and relatives.
b) The tenuousness of life. You could join that community this
evening on your commute home. We can and should prepare for such
an event.
c) You or someone close to you may already have a significant
disability.
Ms
Stone normalizes the world of disabilities. She bursts myths and
lets us know what we are afraid to know:people with disabilities
are the same as people without. She confronts prejudice and reduces
anxiety with practical ways to overcome barriers of fear and awkwardness.
The best part is that she makes us laugh while doing all this.
You'll
learn the nuances of language: the correct term is a person
with a disability.
You'll
learn the nuances ofetiquette: it is not appropriate to touch
a wheelchair or guide dog. It is important to sit when talking
with someone who is sitting.
You'll
learn the nuances of architecture: an inch may be a mile for a
person navigating a wheelchair over a strip of wood nailed to
the floor or across a lush, thickcarpet.
You'll
learn the nuances of attitude: the author skewers those who refer
to the person with a disability as if s/he were not present.
Ms
Stone shares just enough research, alerting us that at least 20%
of the population have some level of disability; mostlive in poverty.1:p4
She describes Denmark's brilliant cost-cutting decision to replacenursing
homes with government-subsidizedmixed living complexes and the
Swedish housing policy, requiring new construction to pay special
regard tothe needs of people with physical disabilities and the
elderly. She also describes Vancouver, Canada's successful experiment
with separate accessible transportation. Most people need accessiblehomes
and transportation at some point.
Your
patients will also benefit from this book, which illuminates the
deep emotions of grief and loss experienced by people with disabilities.
It gives a context for the importance of collaborative medical
care in which shared decision making empowers and engenders cooperation.
It describes the disability rights movement and such heroes as
Ed Roberts who moved mountains by refusing to take "No"
for an answer. Spending lonely nights in University Hospital in
an iron lung, he received his PhD from the University of California
at Berkeley despite initially being turned away. He becamedirector
of the California Department of Rehabilitation in 1975 and is
considered by many to be the Martin Luther King, Jr of the disability
rights movement.
Some
topics covered in this wide-ranging treatise on disabilities are:
diet and exercise, education, jobs, attendant care, money, nursing
homes, and suicide.
Ms
Stone describes the solitary journey each person travels into
the unknown territory of disability. As her own neurologic disability
progressed, her once physicallyactive life slid slowly to a halt,
but her life as a journalistblossomed. Shewrites primarily about
coping with physical disabilities, but devotes space to abuse
ofpeople with disabilities and "invisible disabilities"
including mental illness.
She
puzzles over causesof mental illness, describing her own fierce
depression that led to a suicide attempt as she awakened to her
disability. I had puzzled over these symptoms too. I contacted
Ms Stone to discuss new research from the Adverse Childhood Experiences
Study by Kaiser Permanente and the Centers for Disease Control
and Prevention that helped me understand the origin of depression.
Without hesitation, she welcomed me as a friend and colleague.
You will probably consider her a friend and colleague too, after
reading Awakening to Disability.
Reference
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Stone KG. Awaking to Disability: Nothing about us without us.
Volcano (CA):1997.
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