I want to describe myself so that, after reading the remainder of
this book, the reader may better realize the enormous variety of
solutions which can be employed to solve problems. The idea is not to
try to write a "How To..." book. There are almost as many physical
disabilities as there are physically disabled people. Everyone is
different and thus faces different problems, making it virtually
impossible to write a book for even one hundred people that explains
the "proper way" to perform a particular task. This book describes my
disabilities and experiences and the aids I use to solve some of the
problems encountered. It does not attempt to present a recipe for
success. The reader will be introduced to some easy to make aids which
can be copied if useful. Most importantly, individuals should be
spurred to think of solutions to problems that fit them or someone they
know. That is the first step - THINK for oneself. If one is able to
solve just one problem because of having read this book, then my time
will have been well spent in sharing some of my experience.
I was born in 1949 in Chicago, Illinois. It was a breech birth and,
because of efforts to free me from the birth canal, a brain hemmorhage
developed. This was rather extensive and damaged the cerebellum from
approximately the left temple, all the way around the back of my head,
to the right temple. (Picture a man bald only on top of his head and
the extent of my brain damage will correspond to his hair.) I was not
supposed to live according to the doctors, and then, when I did
survive, they concluded I would never be anything more than a
"vegetable". Luckily, within the first few months of life, my mother
felt she saw signs of intelligence in me and determined to keep working
with me. She did this despite the doctors' advice to, "put him in an
institution and forget about him."
The disability manifested itself in a speech impediment and a general
lack of coordination which prevented me from walking or using my hands
for anything but the simplest of tasks. I was finally diagnosed
correctly as athetoid cerebral palsied. The lack of coordination meant
I could perform gross movements (like cradling a football to my chest)
but not more detailed movements (such as gripping and throwing that
football back to the quarterback.) This lack of coordination affected
all of my limbs, but I learned to get around well by pushing my
wheelchair backwards with my feet.
Not long after my birth my parents moved from Chicago back to Houma,
Louisiana, a small town sixty miles southwest of New Orleans in which
they grew up. Shortly thereafter I began attending the Cerebral Palsy
Center of Greater New Orleans in order to receive physical,
occupational, and speech therapy. My mother, after getting a job at
Texaco, having a healthy boy named David, and going through a divorce,
sought and received a transfer from Houma to New Orleans so I could
receive therapy more than once a week.
Under the guidance of therapists and doctors of the center, I made
tremendous progress. I was able to walk in braces at the age of five
years with merely someone's arm for support.
About this time I was in front of our apartment one day peddling around
in one of those old peddle cars. A group of older children came along
and offered to give me a push. I lifted my feet off the pedals and said
yes and they took the steering wheel and started pushing. They pushed
faster and faster, until I felt I was flying! Then, unable to keep up
anymore, they let go. When the steering wheel was released the little
pedal car swerved and turned over. I hit my head on the sidewalk. The
accident caused a brain concussion which in turn led to more brain
damage. I regressed after that and never again was able to do some of
the same things I had done before, such as walk on someone's arm.
At the age of eight years I moved away to a boarding school so I would
be able to receive therapy everyday. Until then I was attending a
special class in public school and was able to go to the Cerebral Palsy
Center of Greater New Orleans for therapy only twice a week. This
boarding school was the State School for Spastic Children. The name was
a misnomer since the school accepted children with many types of
disabilities, not just spastic cerebral palsied children. I attended
the State School for Spastic Children until I was twenty.
I would say that the physical and occupational therapy I received there
continued to help me improve until I was twelve or thirteen. After
that, neither type of therapy had a significant effect on me. (Probably
because I was recalcitrant.) Speech therapy, on the other hand, always
seemed to help.
Personally, I believe that much physical and occupational therapy
becomes ineffective after a certain age (usually the early teens.) It
is at this time that one should shift his or her emphasis from trying
to cope with life's physical problems the same way as most other people
would, to coping through adaptation. This means finding and using
methods that work for each individual, even if the methods are
significantly different from the ones employed by the majority of other
people to tackle the same problems. Here, however, I hasten to point
out that physical and occupational therapy are always important at an
early age, and in many cases they continue to be important for years.
Also, my knowledge is basically restricted to cases in which the
physical disability has existed from birth: I do not know much about
therapy for paralysis, post-polio, or disabilities that tend to develop
later in life.
I am merely saying that there comes a time when many who are physically
disabled need to refocus their energies on the process of adaptation -
learning how to solve problems in their own ways - instead of trying to
do things like everyone else. No one's advocating "not fitting in"
here. On the contrary, a disabled person can "fit in" much easier by
learning the best ways he or she can solve common problems, from "How
do I get into a car?" to "How do I clean myself after using the
For many this time of refocusing is unduly delayed, and for many others
it never comes at all. If you are a physically disabled person who is
ready for this change, reading this book should help bring it about.
The parents, relatives, or friends of a physically disabled person can
also learn from this book. They can help that individual develop
methods of adaptation now or when it comes time to focus on the
practicalities of living an independent life.
It may be hard to give up the the idea that, through therapy, a
disabled individual can learn to accomplish everyday tasks in much the
same manner as everyone else. This is primarily what therapy teaches -
a semblance of normality. But it has its limits. When these limits are
reached it is then time to turn to adaptation.
It is especially important, I believe, for parents of disabled
individuals to be able to recognize when these limits of therapy are
reached. For it is the parents' duty to be able to redirect their
child's energies. Unfortunately, the majority of parents are not aware
of the alternate pathways presented by adaptation. Others find it
difficult to be objective regarding their child's progress. Emotion
clouds their ability to be objective. It is imperative that the child
learn about adaptation when it is time, from someone. Parents need to
be educated in order to become aware of when these changes need to be
implemented. This can be done by talking to therapists, doctors, and
educators, and by reading appropriate books on the subject.
I have a severe speech impediment (though, my speech is now much better
than it was.) I have a lack of coordination. I frequently have
involuntary movements of my arms and legs. In other words, my physical
disability is basically the same now as it was after entering this
world in 1949, not expected to live. However, I am not now as
"helpless" as I was then or when I was twenty-six. A significant degree
of independence has reshaped my life. That is based on having embraced
the ideas and concepts of adaptation.
Succeeding chapters describe and illustrate many of the methods and
aids I have learned to use in order to enhance my physical
independence. First, let me tell a true story. It is the story of how I
recognized, and then met, the challenge of my life thus far.