12 Disabilities & Relationships
Description
This article is from the Essays on the topic of Women and Disability.
12 Disabilities & Relationships
Disability and Relationships
by Tracy Odell
"There was a nurse I liked and I remember asking her if I'd ever
get married and have children. She was very doubtful. She felt a
man wouldn't want the burden of looking after me; he would want a
wife who could look after him."
There was a long time in my life when I thought I'd never have
anything to say on either the topic of sexuality or the topic of
relationships. I was born with a disability, which wasn't
noticeable until I was old enough to walk--and didn't. My life
moved forward in every other aspect, such as school and making
friends, but relationships--you know, the personal ones, seemed
to elude me.
I was a "late bloomer" in that it took a long time for me to
develop an intimate relationship. Why would it take longer for me
to fully develop as a person as compared to my non-disabled
peers?
Common wisdom is that you have to love yourself before anyone
else can love you. Is it very easy to love yourself if you
happen to have a disability? It should be. But it is, in fact,
very hard for us to love ourselves as we are. At least it was in
my day.
I was fascinated recently to find out that the first documented
person with a disability was a Neanderthal known as "Shandy."
Shandy lived, loved, and died many millennia B.C. He may have had
spina bifida. His skeletal remains show he had one small arm and
some injuries which had well healed over. He was found amid
objects from a hearth. Archaeologists and anthropologists can
tell us that people who tended the community hearths were valued
and respected, even revered. So certainly in 50,000 B.C. or so,
it was possible for someone who had a disability to be a valued,
contributing citizen. I don't know about Shandy's personal life,
of course, but his bones tell a wonderful story of how someone
with a disability was the hearth, the warm, vital, living heart
of his community.
Much later in time, people with disabilities were regarded
differently. In nomadic societies, people needed to be quick and
agile. The hunter-gatherers were valued, not the hearth-tenders.
The Spartans were an example of a society that valued strength
and perfection. They're the ones who left their children alone on
a hilltop overnight as a test of their strength and
worthiness. Children who survived this test were named and
joined the Spartan society. I used to wonder: How would I have
slowed them down if they had had to carry me everywhere! I guess
I would not have been allowed to live, if I'd survived the
hilltop test.
A quick review of the Bible was hardly comforting either.
Biblical references to disability were few, but got a lot of
press in my circles. People with disabilities appeared in the
Bible to demonstrate the almighty power of God to do as He (She)
wished. Blindness was used so often as a metaphor, I wondered if
they were truly talking about people who could not see
physically or who would not see spiritually. As a ten-year-old
Bible scholar, these metaphors were mixed and confusing. If God
didn't have to accept people with disabilities, did anyone?
You need to know that when I was growing up in the mid-sixties to
mid-seventies, the popular and accepted mode of treatment for
people with disabilities was life in a institution. I met many
other kids there who had disabilities. Some could do no more than
me, some could do less. I lived in an institution from the time I
was seven until I was old enough to sign myself out at eighteen.
For the life of me, I couldn't figure out why some of these kids
were there. They were so capable. At least for my sister and I,
our parents had to do quite a bit to look after us. They'd have
to help us get up, go to bed, use the washroom, and so on. Kids
become increasingly physically independent
starting at age two, but someone would always have to help us
with everything physical.
I guess the crunch came once mom and dad separated. We were
older, we needed wheelchairs and back braces which my parents
couldn't afford, and we were rejected both from the
neighbourhood school (too sick) and the segregated school (wrong
disability). So off we went to an institution, run by nurses. My
mom called it The School. This institutional hospital, home, and
school was known as "The Home for Incurable Children" when my
sister and I went to live there. She says the first time she saw
that sign she felt like Oliver Twist.
My life in the institution revolved around rejecting the
disabled part of myself by "improving" it through therapy. All of
us were taught it was better to use crutches than a
wheelchair, better to limp along off-balance than use crutches.
The goal was to look as "normal" as possible. Many of us learned
later that function was better than appearance. The nurses
snubbed my pleas for a motorized wheelchair that would give me
effortless mobility, saying it was better to use my arms.
Pushing a chair wore me out so much, I was good for little else
halfway through the day.
In my day, people with disabilities were rejected on every major
front. Many of the kids I met in the institution were abandoned
by their parents who could not deal with a child who was not
perfect, or who needed more attention. At least our family stuck
by us while we were there, but I saw the damage done to other
kids literally orphaned at the door. Some families truly thought
the child's disability was a punishment for their sins. Oddly,
others used us for redemption through charitable activities for
our benefit.
Add to this the use of disability to show evil--Captain Hook was
more sinister because he had a hook for a hand, villains are
disfigured by scars, or missing limbs (Eddie in the Friday the
13th series); or the use of disability to draw out pathos such as
the Hunchback of Notre Dame, who was feared, then understood, or
Jill in The Other Side of the Mountain and other movies like it.
As difficult as it was at times to be born with a
disability, sent away from home, and raised by strangers, how
awful to become disabled when you weren't supposed to be that
way.
I struggled with all of these messages as I was growing up.
Intellectually, I understood what my disability was and how it
was genetically introduced. Yet emotionally, I thought people
with disabilities were a mistake, or else God wouldn't have been
busy curing all those people in the Bible; or that we were just
barely tolerated--allowed to live, but not allowed to interfere
with anyone else's freedom; or sad but accidental creatures of
chance. It's a wonder I emerged with any sense of self-concept at
all.
With all this history, literature, and our portrayal in the
media, what's going to be in the back of anyone's mind when
meeting someone with a disability? What would be going on in the
back of a boy's mind that I might meet who was a volunteer at the
institution or an able-bodied classmate at high school? Would he
imagine me as a potential girlfriend? wife? friend? Would he feel
sorry for me? Would he only like me if he was weird?
I remember being 10 or 11 years old and starting to think about
my potential as a complete, adult person. There was a nurse I
liked and I remember asking her if I'd ever get married and have
children. She was very doubtful. She felt a man wouldn't want the
burden of looking after me; he would want a wife who could look
after him. Besides, how would I dress my children if I couldn't
even dress myself. Now, you need to understand she said all this
very kindly. There was no hint of animosity at all. She wanted to
help me to learn to accept my circumstances and their realities.
She did not wish to pump a child up with false hopes for the
future. I think because of all this, I always remembered this
little heart-to-heart chat. Because she was so sincere, I not
only believed her, but I limited my sights and expectations based
on the "facts" laid out for me.
I figured that I probably would never marry, but if I ever did,
I'd just let my husband have a mistress so he wouldn't feel
deprived. Now, as an adult who still has a disability, but also a
career, husband, and family, I can afford to laugh at my
naivete.
Friends teach us what is likable and "cool" about ourselves.
Growing up in an institution, we had two categories of friends:
1) kids on the inside, who were not all that important, and 2)
kids on the outside who we would live and die for.
My whole notion of what a friend was, was totally skewed. These
outside friends were volunteers, dropping by once a week or on
weeknights to do their good turn for society. This was charity,
not natural, freely-given relationships. They weren't paid to be
there, but they wore a name-badge. Also, we were friends within
an artificial environment--visiting hours were over at 9:00 p.m.
I always thought they were as sad to go as we were to see them
leave. Our social life came to an abrupt halt at 9:00 p.m. to
make way for the institutional routines and rhythms; their
social life really began after they left us.
I got to go out to a regular high school, since the
institution's school only went as far as Grade 8. I was socially
inept with non-disabled kids. I finally made a good friend part-
way through Grade 10, but throughout high school I was never
asked on a date. I figured I'd have to wait until university,
where I could count on people's maturity to see the real me,
through my disability, before I could start dating. But, I never
had a date in university either.
It's a wonder that I ever met my husband, David, in the first
place. Getting there was anything but smooth. In earlier
relationships I probably put up with treatment that other self-
respecting people wouldn't have tolerated. My poor self-esteem
and low expectations for relationships affected my judgment, and
I hung on too long, thinking it was the best I could do.
But as I started working, I gradually developed self-esteem. As I
gathered competence and skill at work, my self-esteem
increased.
Now, I have two children, with all the accompanying blessings and
pains of parenthood. Some days I'd recommend it; some days I
wouldn't. Parenthood has been another type of struggle. I have a
high degree of acceptance and support of me as a parent from my
co-workers, my friends, my daughter's teachers, doctors, and
others I have met. My family, on the other hand, was initially
very concerned about the physical demands of pregnancy, birth,
and raising children. My family also worried that a mere man
could never cope in a "mother's role."
By the time I was married with a baby on the way, I had been
living outside of the institution for twelve years. It's ironic
that it took me the same length of time to throw off all its
baggage, year for year.
I lived in an apartment where attendant support was available.
Someone who was not a nurse would come and get me up in the
morning, help me go to the washroom, go to bed at night, and
perform other routine household tasks. My pregnancy met with a
low degree of acceptance from the attendants. They assumed the
baby would not be looked after properly and that I would put
extra demands on them to help me do it. The attendants could not
make the transition easily from me as a single person with a
disability to being half of a couple with a baby on the way. On
top of dealing with my own anxieties about what I was doing and
what I was in for, they made my day-to-day life a living hell. I
had to move out and search for another setting where I could be
accepted as doing a perfectly normal and human thing.
Once I was able to move to another attendant support service
setting, where staff got to know us as a family right from the
start, I had no further problems with attendants accepting us.
When I became pregnant for the second time, the attendants were
jubilant. What a change! Since my first pregnancy had gone well,
and little Katie survived we novices as parents, my family felt
more comfortable about our having a second child as well.
My husband, David has been the primary care giver for both of our
daughters. It is not an option for me to be home, so I
continue working.
All these experiences have contributed to my growth and
development as a human being. Of course people with disabilities
are fully human; we all start out that way! We need families to
love us. We need friends to teach us how to care about other
people. We need someone special in our lives to share ourselves
with and with whom we can be intimate. We need to accept
ourselves for all that we are; this helps others to accept us
too. We need to be out there in the world, so even our very
presence can raise awareness.
In our own unique ways, we need to leave new "bones" which show
our own hearths, our hearts, and our "cent redness" in our
community. Perhaps we have focused too much on independence.
Human beings are interdependent. We always have been. We always
will be.
I've always felt like an explorer--pushing the boundaries of
where others said we could go. It's almost as if I had to do the
things I have done just to prove the common person wrong. Told
I'd never do anything productive for a living, I did. Told I'd
never live outside of a hospital, I did. Told I'd never walk,
well, who needs to?
What people with disabilities need to work on is protecting our
rights to have choices. We have not been given many choices in
the past. Low public awareness and a poor perception of us has
made inadequate service systems acceptable. We've been put on
waiting lists rather than offered services which meet our needs
with dignity. The people closest to us--our families, medical
professionals, and our friends--have betrayed us with limited
expectations. And many of us have sold ourselves equally short,
believing the shallow possibilities others cast our way.
People with disabilities, more and more, are a powerful force to
be reckoned with. We are getting better at making our needs quite
clear, whether it's a need for services or uplifting
relationships. If we wait for others to do it for us, it will
never happen. It's up to us.
This article is based on a keynote address given by the author on
April 3, 1993 for the Ottawa-Carleton Independent Living Centre's
conference on Sexuality and Relationships.
Tracy Odell was born with a disability which necessitates the use
of a power wheelchair for mobility. She graduated from York
University with an Honours BA. and B.Ed in English and Special
Education. She has worked for the provincial government since
1987 in adult literacy.
JANCIS M. ANDREWS
Deaf Mute?
"What a pity--that couple can never speak to each other about
their love. "
(Woman talking about a disabled couple).
This dance of fingers
sheds veils of air, reveals
ten times over the
nakedness of my desire.
My palms doubly celebrate you,
inscribe my love
upon the space between us, enclose
tenderness, shape it
like a flower.
And though the world about us roars,
this silence
is our own private universe
wherein I sow a promise: kisses
falling like stars
upon your mouth, each fingertip
a white flame
foreplaying Heaven, igniting us
toward that wordless ceremony
where you and I
will blaze in pas-de-deux
into the profounder silence
that will be our bodies, singing.
Jancis M. Andrews lives in Vancouver and has had her poetry
published in numerous magazines. Her collection of short
stories, Rapunzel, Rapunzel, Let Down Your Hair was published by
CaCaNaDaDaDa Press in 1992.
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