N O R T H C O A S T T IM E S E A G L E , MAY/JUNE 2005
PAGE 7
IS SPASTIC POWER AN
IRRATIONAL FEELING?
BY ARTHUR HONEYMAN
MICHAEL deWAIDE, FROM ‘SAM & HIS CARP
Some CPs are disturbed by spasticity in their eyes,
which may receive double vision, reducing the person's sense
of balance.
As with all CPs, disturbances like these are caused
by misdelivery of the message to the brain through the nerves
resulting in an inaccurate perception of the eyes. An example
of an athetoid's problem of muscles is when an athetoid reaches
for an object — nerve cells misdirect the hands so that the object
is not reached or knocked over. Also, in many CPs hearing may
be defective. The result is that the CP may appear to be stupid
or uninterested.
For centuries the CP was regarded as an idiot because
of spasticity, drooling, speech and other convulsive traits. CPs
can be paraplegics (which refers to two limbs), quadriplegics
(four limbs) or hemoplegics (one side of the body).
Because athetosis is the affliction I suffer, I am going to
concentrate on it. Also, I believe it to be the most terrible of the
various types of cerebral palsy. The reason is this: Many victims
of athetosis are not able to write or feed themselves, display
annoying and unpleasant actions such as facial contortions and
drooling and exhibit wormlike movements. This naturally means
the CP is not readily accepted by society. Obviously one can see
what this would do to the average CP's social standing.
The athetoid can be extremely strong physically and
still not be able to attend to the simplest things which the
average person takes for granted. I can lift myself up by using
an over-head bar so that my feet don't touch the ground, but I
cannot hold on to a glass of water — not because I am not
strong enough but rather because I am uncoordinated and the
glass shakes out of my grasp. The harder I try to do something
the more difficult it becomes. I become excited and tremble
(which almost everyone does from fear or excitement) to a much
greater than normal degree; I spasticate. One may ask, "Why not
relax?" Of course I should relax. I would be able to do all sorts
of things. I would be able to speak better. But it is difficult for
an athetoid to relax. It takes us rigorous and slow training and
development of muscular control to relax. This depends partially
on the severity of the affliction, partially on individual character
(up-bringing, background and environment), and also on medical
facilities as well as psychological or psychiatric treatment.
I believe the greatest overall problem which a CP,
especially an athetoid, faces is the problem of being socially
accepted. One cannot rightfully expect to be accepted on an
equal basis by society unless he or she proves equal to it. This
is true whether it is blacks, Jews, alcoholics or CPs. On the other
hand society must give each the equal chance to prove equal,
which it does only reluctantly and slowly. This means minority
groups must work twice as hard or more to achieve acceptance.
This is extremely difficult for a CP, particularly the athetoid
because of the inability to function as well or as fast as the
average person. It is also difficult to make friends because of
spasticity, drooling, unpleasant facial expressions and speech
defects.
Victims of other afflictions such as polio, muscular
dystrophy, muscular sclerosis, and so forth, do not always
accept CPs to be on their own level. CPs must prove to be
equal to them. I first discovered this while attending a school
for crippled children. I was shocked and hurt and I don't think I
have ever quite recovered from this realization. A roommate at
the school coined an interesting but unoriginal phrase, "The only
good CP is a dead CP." This in essence expressed the feeling
of almost all who did not suffer CP.
Very few CPs marry and very few have much of a home
life, if any, after their parents die. It is a problem for the public to
take care of those afflicted with CP. For years the problem was
taken care of by conveniently tucking CPs out of sight and
putting them in a dark comer where they lethargically pass the
time. The public is slowly arriving at an awareness that the CP
is included in the human race.There are special schools, special
homes, special associations for the CP. However, there is a
tendency to confine CPs or all cripples into one little social
group.
The life expectancy of a CP is considerably less than a
average person. This does not mean they die early because of
physical degeneration, but rather from psychological attitude.
This attitude is primarily from not being accepted in society on
an equal basis and not being able to do what the average person
can do.
Education is crucial to the survival of CPs as well as all
handicapped persons (even more than to non-handicapped).The
individual who is both versatile and efficient takes priority in the
job market, especially when jobs are scarce. It requires skill to
become and remain employed even in the best times. This is
especially true now when people everywhere are being laid-off.
So-called able-bodied unemployed workers can do hard labor
or other physically oriented tasks. Not so with CPs or other
handicapped who find it difficult to be employed at any time.
Education, doesn't guarantee jobs, but it does help, especially
disabled jobseekers. During times of government cutbacks,
we "handicaps" have to be resourceful just to stay alive without
financial aid from agencies or organizations of some kind, public
or private.
I would have never have been employed without a
decent education. Luckily I was able to attend college. Both
of my degrees (B.S. in History and M.A.in English) have not
directly related to any position I've held, but they give me more
credibility than no degree. Combined with my real-life experi
ence, my academic education has given me the skills to create
every job I've ever had.
Throughout the ages the CP has been treated more
as an animal than as a person. In ancient Greece, for instance,
CPs were thrown over cliffs to their deaths because of their use
lessness — as were all physical cripples. During the Middle Ages
they were locked away in dark pits along with the mentally
insane. During the Renaissance period artists depicted them as
creatures in their works. A carving from ancient Egypt was dug
up of a person whose body was deformed in such a manner to
indicate he suffered from cerebral palsy.
It has not been until recently that CPs were allowed out
into the streets and to intermingle in society. During the late 19th
century, for example, CPs were confined to rooms and were
more or less a thing nobody talked about. CPs are much better
off than they have ever been, and the future looks brighter than
the present. The promise that modem technology and medicine
might come upon at least a partial cure has become more likely.
More than that, the public is becoming more aware and under
standing of the problems of cerebral palsy, which means CPs
can hope for a more pleasant future.
Michael deWaide illustrated 'Sam & His Cart' as well
as two other books written by Honeyman. He lives in Astoria.
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They no longer throw people like me over a cliff.
I should probably find that example of historical progres
sion comforting — but I think it is threatening instead.
I am a spastic. I was bom with cerebral palsy. I am a
freak. My body shakes like four winds tearing at it from all points
of the compass. My speech is tortured almost to being incompre
hensible. I drool and vomit almost uncontrollably. I cannot even
write without laboriously dictating to someone.
I also cannot eat unless someone feeds me. To go to the
bathroom, someone has to take me, put me on the toilet and wait
until I am finished. I have to be undressed for bed and dressed
the next day for work and school. I am (65) and have to be cared
for like a six month old baby.
But my mind is free. I am a scholar, a poet and teacher.
I have campaigned twice for the Oregon State Legislature and I
have traveled alone or accompanied by friends throughout the
United States.
I am a freak and sometimes an embarrassment to
others, but not to myself. Living within this shaking body,
however fettered it may seem, is to me the most natural way
of living because it is the only life I have known.
I do not exist because of society’s benevolence. I am
not a charity case dependent upon a historical moment of
benevolent distraction by the larger society. And I am not alone.
Within the greater Portland area there are some 70,000 persons
officially classified as "physically handicapped."
These people are the chronic cripples such as myself,
bom with cerebral palsy or other malfunctioning or missing parts.
They are aged whose once strong mobile bodies have withered
and decayed to an almost functional paralysis. They are the deaf
and blind. They are the victims of accidents and wars, many
especially from the profusion of landmines and booby traps used
in the war in Southeast Asia which rendered an unbearable
proportion of young men without amis or legs, not to mention
the great number who lost their sexual organs.
These are the physically handicapped. There are many
thousands of us, but somehow we remain functionally and
politically invisible.
Let’s face it, the “problem" of cripples is not a priority.
It is not even a priority to cripples themselves. Cripples are doing
alright these days — they're not being thrown off cliffs.
My analysis of the political situation of cripples in Port
land and in all major cities starts with the notion that people do
not want to talk about it nor want to do anything about it, and
when they do something, they want to do it quickly, to get it over
with rather than follow it up with new ideas and new forms of
action.
Because mobility and easy access to most parts of the
city is virtually impossible, urban life for the physically handicap
ped is almost a nightmare. More than just physically forbidding,
It is psychologically debilitating.
The term physically handicapped is itself a psychological
handicap — it implies that we are just a medical problem with
which the larger society has to contend. It makes us feel as if
we are not responsible for ourselves but are totally dependent
for our survival.
Yet, the fact that there are so many thousands of us in
just this metropolitan area alone could be of considerable signi
ficance. Together we could have forcible impact on decisions —
or the lack of them — that determine our lives. We are potent
ially visible.
Cripples themselves are reluctant to act because they do
not realize what positive things action can do. They feel only the
negative aspects; they feel they will lose money from the Division
of Vocational Rehabilitation or financial and moral support from
charitable organizations and friends.
Cripples have been taught from early childhood to be
grateful for what they have and to smile bravely in spite of the
hardships, or they are indeed surviving in a benevolent society.
Given the expectations and dependencies with which
I was raised, it takes a lot of gall to write something like this
which does not show a humble and grateful cripple.
As far as I know, I am the only one who writes about
cripples from a political viewpoint. It has been my experience
that even so-called political radicals — the ‘ champions of the
underdog" — do not write about cripples. Political liberals write
about what is being done for cripples, but not about what is not
being done. Cripples not only do not write but they don't think
I should write; the boat shouldn't be rocked, especially by a
spastic.
Part of the problem is that some cripples go inside
themselves to find inner religious sources of comfort, thereby
ignoring the terrible realities and problems they confront. Having
found that solution, they are only perpetuating the problems they
so greatly fear.
I am called a cynic because I challenge the spiritual call
in order to find and take political action. A spiritualist does not
disturb the existing order of things. A spiritualist accepts. Accept
ance is what makes people happy.
I am more interested in survival.
A woman told me years ago that I would be better off
dead The statement itself almost scared me to death, but it
taught me a valuable lesson. From then on, survival has been
my primary interest.
Survival depends upon a multitude of factors — foremost
among them is the realization that cripples like myself cannot
allow our survival to be wholly dependent upon the good graces
of society. We must understand that we are a social and political
force and have the power to determine our own lives. We must
also make society realize that we are citizens also, that we have
as much a vested interest as anyone in the political processes
that determine the planning of our cities and the forms of our
government.
If society continues to see us with blind eyes, if society
continues to regard us as a problem instead of as an integral
part of that society, then I predict that politically the cripple has
no hope for survival, especially when it comes to the question of
emergency life or death conditions which could occur in times of
political chaos or intensified fear. Under such conditions, cripples
will be more than a social inconvenience, they will be an expend
able danger to society and mercifully killed again.
(Metropolis Magazine, 1974)