04 Disability Marginalizes People?
Description
This article is from the Essays on the topic of Women and Disability.
04 Disability Marginalizes People?
Margins Are Not For Cowards
by Cheryl Gibson
I can be marginalized by my own attitude or by the constraints of
a world designed around those people who can sit and walk and
carry things.
Does being a woman and having a disability somehow marginalize
me? I don't think so, except when I'm having a really bad day.
Like the time I wanted to take my children on a holiday and found
that Via Rail refused to accommodate me. Or the time I tried to
attend a conference for Health and Welfare Canada and Via Rail
informed me that the train was fully booked months ahead with
tourists and they didn't have to keep any seats for people who
couldn't travel any other way. The time I was in a wheelchair and
asked for a cup of tea, only to be told to get my own tea on the
other side of a wheelchair inaccessible room, has to near the top
of the pathos scale. Major setbacks or minor insensitivities can
make even a tough "cripple" like me wonder if it is all worth it.
What does it mean to be marginalized? According to my
dictionary, it is derived from the Latin "merg" which means a
boundary; it can also mean "a lower standard or limit of a
certain quality." Perhaps these two have blended to imply that
people who can't meet a certain standard are expected to stay
outside the boundaries of civilized society. That is certainly
how it feels to discover that the things I used to take for
granted are now out of reach. What is even more frustrating is
when society thinks they should be beyond my expectations.
I wasn't born with my disability. It is the result of a failed
back operation, so I still have the expectation that I will be
able to do the same things and go the same places--because I am
very stubborn, I thought it was just a matter of figuring out
how. The reality of a world that is made for the average
person's needs is slowly sinking into my conscious mind. It is my
subconscious that keeps insisting that there has to be a way
around, over or through any obstacle or problem. Either that, or
it is just a habit I developed early in life and have yet to
outgrow. Whatever the cause, the effect is the same: I never stop
trying to live a full life and am surprised when the rest of the
world thinks I should be content with something less.
Before I had my operation, I was oblivious to the barriers that
are created when a society is geared towards providing services
for the majority. I didn't purposefully restrict the activities
of women who could not walk, but I did wonder if all those
handicapped parking spaces were really necessary. I assumed
people who couldn't walk were fortunate to have ramps and
wheelchairs and shouldn't aspire further than an accessible
washroom.
At first, I fought the idea of a wheelchair, of a scooter and of
two canes. Only when my "back was against a wall" because my legs
wouldn't function, did I admit that I needed help. It was
humbling to realize that I could no longer live my life on my
terms. My mother claims that I was born on my own and have been
on my own ever since, so the thought of using an "orthotic
appliance," as they are euphemistically labelled, was admitting
defeat.
It was even more difficult for me to resolve my feelings about
depending on other people than it was to admit that I had to use
a wheelchair. In my mind, a grown woman should be able to stand
on her own two feet in every sense of the word. When a feminist
who has spent all of her life insisting that she could top any
man has to ask for help, or worse yet, accept it graciously, then
it is time to rethink all her assumptions about life.
I can be marginalized by my own attitude or by the constraints of
a world designed around the needs of those people who can sit and
walk and carry things. Those of us who have to spend a great deal
of time lying down would have been better off in the Roman
Empire; in this century we need to drive cars, ride in trains, or
work at a desk. My internal struggle to come to terms with a
disability is different from the external struggle of fitting
into society.
My philosophy, which grew out of the turmoil of facing a
permanent disability, rests on the cornerstones of
interdependence and balance. I still, especially as a woman with
a disability, need to feel self-sufficient, competent, and
useful. Being thought of as attractive wouldn't be bad either,
but I'm not sure if society is ready to see people with
disabilities as sexual beings.
Interdependence requires a delicate balance of pride and
humility, common sense and resilience. Last month, I was staying
in a hotel with my daughter, Jennifer, who is hearing impaired.
We were in town for her hockey tournament and had to haul hockey
equipment plus the usual luggage into the hotel. When we were
looking for a place to park, we noticed that someone had parked
in the handicapped parking spot without a permit. Jennifer went
to the desk and confronted the manager about not enforcing the
parking by-law and about having only one space. The manager found
a parking spot for us. Later, Jennifer decided to watch a movie
on TV and asked me to phone the manager to find out if they had
closed captioning for deaf customers. I did and they didn't, but
the hotel at least became aware that it was an
important issue for some people. This is a classic example of
being interdependent. I was able to help her when she couldn't
use the phone and she was able to help me when I was in too much
pain to confront anyone.
Balance is something which is very hard for me to achieve
because it means leaving things out or paying for them later.
That is a difficult choice for someone who used to want it all.
There are times when I choose to do something, like going to my
daughter's graduation, even though I know I will be in more pain
at the time and for several days after the event. I have
discovered that trying to do things that I used to take for
granted is impossible unless I am willing to give up something
else. It is a lesson that all women learn, but it is more brutal
for some of us. Living a balanced life is crucial to
accomplishing anything. I am always asking myself "How much do I
need this and am I ready to pay the price?"
My work used to give meaning to my life. It defined me as a
mother and a psychologist. Not to work is to become invisible, so
I have created projects to occupy my mind. There are times when I
get frustrated and have to admit that the work is too physically
draining, but then I remember that I really should be grateful
because two years ago I couldn't write at all. Trying to work
within my own limits puts me completely out of step with the rest
of society, but not working renders me obsolete.
My struggle to find meaning in my new life as a woman with a
disability has taken time. I needed to understand, at the
deepest level, that there were real limits which I couldn't wish
away. Then I had to find a way to incorporate those limits into
my life without becoming dehumanized.
Creative expression in writing poetry, prose or in art became my
route to wholeness. I learned that I can avoid being
marginalized in life if I refuse to recognize that margins
exist. I still get irritated when I can't do something that
everyone else takes for granted, but I'm also grateful that I
have the opportunity to live a full, rich life within the
parameters that I have been given. I can create meaning within my
life. Finding joy and possibilities takes greater creative effort
when the options are limited, but it also provides
greater satisfaction. I suspect that most women have had to face
this restriction of opportunities at some time in their lives.
When society defines us as marginal, for whatever reason, it can
be a signal to fight back. Margins are not for cowards.
Cheryl Gibson is a psychologist who specialized in educational
psychology and neuropsychology until she had a back operation in
1989. As a result of the operation, she was left with a
permanent disability. She is unable to sit, to carry things, or
to walk without canes. She can no longer work, drive the car
(except for short distances), or even do simple things for
pleasure such as go to the theatre or restaurants, etc, and she
is in almost constant pain.
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