|
Internaf
Newsletter April 2000 Issue Page 1
Words
from The Editor
--
By Marty Burke
I'm late this
month because I've become completely involved - even
fanaticized - in the effort to take my country back from
"The Establishment" of both our major Parties. And that
brings me to my point. Only a few years ago I would have
been just another shut-in "cripple", reading, maybe, and
waiting to die. But now, thanks to this PC, I can be as
involved as I want to be. Physical travel may now be so
difficult s to be nearly impossible, but virtual travel is
effortless and easy. Likewise, English is fairly generally
ok, but my fluency in other languages means I can do that
much more. For example, I now have ICQ friends in both
Russia and Malaysia. They don't speak English and I speak
neither Russian nor Malay. But since we all speak German, we
can be, and are, friends. Likewise, I have a friend in
Lausanne who has no English, but since French is a common
language, we can converse. And all at the speed of light and
free. Amazing!
This
newsletter, for example, is edited in Florida, sent
instantly to England to be published there, and read all
over the planet. Amazing! Did you know that this page is
"living" on a U.K. server? Do you understand the
implications of that? Simply amazing!
Life
With Chair: Progressive Blues, Part III
By
Sharon Anderson
Or: A Coming
Out Story
Sitting on
both sides of the client/provider table simultaneously has
been a very interesting experience. I've learned things
while sitting on the client side that often make me wonder
just what would be the best way to provide a service, since
we are obviously failing to meet the need. Occasionally,
I've encountered things which, as a former able-bodied
person and a teacher of disabled children, make me cringe in
embarrassment and guilt. And now that I'm disabled, my view
of my place in the social food chain is continually
modifying itself. The one constant I seem to have as my
guideline now is: Things Change. And occasionally, you get a
blast from the past. But even the blast has
changed.
This was not
always so. As an able-bodied person, I was a loner by
choice. I didn't wait to be snubbed by the crowd in the
lunchroom; I picked the table that only seated
one.
I chose to
live alone. I wasn't particularly adept at home repairs;
that was what a landlord was for. During the process of
growing up and growing older, I had been turned down or
stood up for movie dates fairly often, but probably not to
an extreme degree. However, on me it had this effect: I
stopped asking for or expecting company. Eventually, I
stopped wanting it. Oh, I had one or two "old faithfuls" who
could be counted on if I gave them enough notice, or if I
was really in need. But I stopped wanting or needing casual
friends. And I got out of the habit of socializing. I came
to despise social chit-chat.
Another
factor which added to this trend is that I am a teacher, and
job security has always been very important to me. Sexuality
-- talking about it, and for much of my life, even thinking
about it -- has always been taboo. Until I was nearly
thirty, I was convinced I was really crazy, and if anyone
ever found out, the men in the little white coats would
come, lock me away in the iron mask, and abandon me in an
oubliette. When I finally met a teacher who said, in front
of a whole group of women, "I am a lesbian," my world
rocked. It was the first time I had heard anyone say the
word out loud. And she did it, right there in front of God
and everybody else. Maybe I wasn't crazy after
all.
Shortly after
this, I graduated, and took a job in the midwest. Farm
country. Where people offer you lemonade when you get out of
the car to make a home visit. Where they tell you that
you've arrived just in time for dinner, and set an extra
plate at the table.
But not if
you're One Of Those. Not if you're queer. Not if you have
threeeyes and purple stripes and slobber uncontrollably at
the sight of their wholesome and pure little
progeny.
So, there I
was. Determined to explore whether or not I had the courage
to be a lesbian. Absolutely determined not to jeopardize my
career as a teacher. I put on my teacher suit during the
day, and did the mainstream America thing. At night and on
the weekends, I drank and danced in the bars. I learned to
be the dyke community's Dear Abby. But I didn't learn to
flirt.
And then
along came Patty.
Patty is not
her real name of course. But she appeared in my life, and I
didn't know what to do with her. She was cute. And she liked
me. She was popular. And she liked me. And she was
crippled.
Patty was
born with cerebral palsy. She walked with forearm crutches
and braces. If she had been one of my students, I would have
known how to react. If she had been the parent of one of my
students, I would have known how to react. If she had been
one of the crowd, I would have known how to react. But she
wasn't any of those things. She was a dyke in a very
close-knit community of about twenty or thirty dykes who
lived in hostile country where we weren't sure that getting
picked up by the cops would be any better than getting
cornered by half a dozen drunk rednecks bent on trouble. We
were all more than a little paranoid. And in this community,
Patty was a sister. And she liked me. And she let me know
she was available.
I didn't know
what to do.
If she had
been able-bodied, I probably still would have had trouble
handling it. But she wasn't able-bodied. She most
emphatically was not. It didn't help much that I was madly
in love with someone who was madly in love with someone
else. That seemed to be a qualification for membership in
that particular community. But I could not, I simply could
not understand what the attraction was to this particular
young woman. I mean, yes, she was cute, but so were any
number of others who weren't half as popular. What did she
have? Was it be kind to the gimp week, was it insatiable
curiosity, or what?
Patty was
younger than I was by a few years. She was still in grad
school. She wanted to be a teacher of disabled children.
With 20/20 hindsight, I realize now that at least part of
her attraction to me was that I was already doing the job
she hoped to be doing herself one day. And that was the sole
reason I tolerated her company: we had shared
ambitions.
Well, maybe
not the sole reason. Part of me was clinically interested in
how she managed to live independently. She had to go
downstairs to use the laundry room. I watched her one day as
she managed two crutches and a laundry bag. She managed it.
Slowly, with difficulty, but she managed it. I asked her why
she lived in an apartment where it was necessary to
negotiate the steps. She said she liked the
apartment.
Patty had
vision problems. One day, I watched her find the record
album she wanted (we still had vinyl then) by peering with
her nose on each album cover until she found the one she
wanted. I asked her why she didn't mark the albums in either
braille or with a big, black felt-tipped marker. I forget
her answer, but I remember that it struck me as
insufficient. There were a lot of things which she could
have done to make her life easier. She didn't do them. They
would have markedher as disabled. Patty was out as a
bi-sexual, but she was not out as a disabled person. Despite
the fact that her disability was so very noticeable. I
didn't know why, but this bothered me. The disability, yes,
AND the unwillingness to use some of the "tricks of the
trade" which would have made her life easier. I was
uncomfortable that she wasn't falling into my
preconceptions.
One of the
things I was very proud of (being an able-bodied person,
with all the prejudices and assumptions) was that I could
"be honest" with Patty about her disability. We used to have
long talks about her aspirations to teach disabled kids.
Quite frankly, and with the best intentions in the world, I
tried to discourage her. I said things to her that I now
consider unforgiveable, telling myself that nobody else
would have the knowledge and honesty to say. Things like,
when they see you coming in the door on crutches, they are
going to wonder how you will manage to pick up a child who
has fallen, or get everyone (including yourself) out of the
building in a timely manner for a fire drill. They are going
to look at you and say, I don't think so.
Yeah, well, I
don't have to remind you which road is paved with good
intentions.
When I felt
the pressure of an intimacy I did not want, I sometimes did
cruel and unusual actions. One night, Patty and I ate out at
a restaurant on our mutual bus line. But we'd had too much
to drink, things were leading in a direction which made me
very uncomfortable, and we discovered that the bus had
ceased coming this far out about an hour before. It was a
ten-block hike to catch the last bus home. And the last bus
left in thirty minutes. Looking back, I know that there were
other options. We could have phoned someone to pick us up.
But I was young, and proud, and able-bodied. I insisted we
catch the bus. Patty was young and proud, and for whatever
reason, she went along with me. I set a good pace. We made
it. I don't know how, but we made it. Somehow, despite all
of my well-intentioned errors, we did manage to become
friends. And we stayed friends, even after I moved to
Oregon. But you know how it is. Twenty years, and a
Christmas or birthday card is how you keep in touch.
Eventually, even the cards taper off. Out of sight, and all
that jazz.
Meanwhile, my
own life took an unexpected turn. At the time I was living
in the midwest, I was completely unaware that there was a
genetic marker in my family which I would inherit, and so
become disabled myself. When the first signs of this disease
started to reach out and grab me, I wrote to Patty. We
exchanged a few letters. But we had already started to lose
touch. And life goes on. Although I was briefly active in
the lesbian community here, I sort of dropped out of
activities. And since job security has always been number
one or two on my list, I went back to my old habits of not
socializing with the people I work day to day with. I stayed
silent when they shared their family sagas of weekend
adventures and misadventures with husbands and kiddies. I
had nothing to contribute. No husband, no kiddies.
Occasionally they would try to include me by asking about my
cats. But even I found this topic rather boring and silly.
So I would go straight to my office rather than share a
morning chat in communal space. I would plan to have lunch
out rather than in the office with the rest of
them.
Disability is
a great leveler. It teaches humility. These days, although I
can drive my car to work, and get to my office using forearm
crutches, I can't carry my own cup of tea. I have to ask. I
have to be nice. I have to learn to share an inconsequential
sentence or two, to be polite. I have had to learn the art
of social chit-chat. I still don't have a husband, or
kiddies to talk about. The topic of my cats still dies after
one or two sentences. But everybody loves to compare aches
and illnesses . Since it's obvious I'm falling apart, and
yet limbs are still attached and no running sores drip in
noticeable places, people want to know why I can't walk
without falling down anymore. I have discovered a topic both
other people and I are comfortable chit-chatting about:
disease.
The first
time the morning-coffee group all turned expectant eyes on
me when one of them asked, "What's the name of the disease
you have again?", I felt like Ellen DeGeneris when she
leaned over the microphone in the airport and inadvertently
whispered to thousands of people, "I'm gay." There was that
same feeling of being a bug under the microscope. I wasn't
ashamed or afraid, but it was not exactly the way I would
have chosen it to happen. Since then, nearly every time
someone asks me a question relating to my disability, and I
have to choose what to share and what not to share, it feels
like I am somehow representing The Disabled as a group. It's
not a role I am happy playing.
'll give you
an example. The other day, I went to the dentist because I'd
cracked a tooth, We had to go through the lengthy process of
filing down the tooth and putting on a temporary crown. I
can't spend much time flat on my back without a great deal
of pain. So I had my knees in the air, my feet flat on the
chair, trying to find a position which allowed me to
tolerate the drill in my mouth without extreme back pain. My
dentist asked why I was doing this. Around the appliances in
my mouth, I muttered, "back pain." My dentist asked, "Is
that because of the way you stand?" I wanted to say: no,
it's because I have two spinal discs out of alignment and
resulting stenosis, I have bone spurs on the spine sharp
enough to cut meat, I have a hip socket which is partially
missing, and I have arthritis. In addition to the
neurological disease which forces me to lean on the crutches
for balance. I wanted to say that. But I didn't say it. It
was easier to just say "yes." And in saying that, I heard
the little voice on my left shoulder go, "Tch tch tch. You
had an opportunity there. And you blew it."
Here's
another example. One of my students became disabled when he
and his mother were hit by a car, crossing a highway on foot
after dark. The child has been removed from parental
custody, at least temporarily. Naturally, the mother wants
him back. As part of the legal process, all the specialists
involved with the child were polled about their opinions on
the child's safety, should he be returned home. Now, here's
the kicker. The mother has been physically disabled from
birth. Her child is now physically disabled, and unable to
assist her when she lifts or carries or transfers him. He
has unexpected extension behaviors, where his whole body
will go stiff as a board. I can say from first-hand
knowledge that a person who is already challenged with a
movement disorder of her own is not capable of insuring this
child's safety. And I did say that. But I felt immediately
the need to defend myself, because as a disabled person, I
should be advocating for the disabled mother. Shouldn't I?
But as a teacher, I should be advocating for the child. So
which position takes precedence?
Just shoot
me, right now, and end the dilemma. I don't think I want to
be out as a disabled person. Despite the high degree of
visibility of my disability.
This week, I
got a letter asking for money to be donated to a fund for my
old friend, Patty. It seems she recently had surgery to save
her remaining vision, and now, chances are high that she
will lose all of it. She needs to go to some medical
centers, rehab, and independent living centers, and to get
some of the technological aids and equipment she should have
had before now. So she's obviously dealing with the question
of self-acceptance as a disabled person. Again. At a much
higher level.
Remembering
my behavior twenty years ago, I realize that youth was a
contributing factor. But I also know now that I was
incredibly arrogant as an able-bodied person. I'm finding
that nowadays, quite often, that little censor sits on my
shoulder and gives me either a "tch tch tch" or a thumbs up.
It's a good day when I don't hear a "tch tch
tch."
When I was a
Girl Scout, we had an oath which began, "On my honor, I will
try..." To love myself. To forgive myself. To understand
myself and others. To think, and think again before I speak.
To tolerate little foibles and eccentricities which often
drive me right up the wall. To forgive others. To accept
others for who they are, and not to try to "make them
better." To spend as much time being cheerful as I do
complaining. To occasionally say "pass the cream" instead of
"pass the pitcher. To enjoy the moment. To help others. To
be a better person.
Well, it
didn't really end that way. But maybe it should
have.
Home
Index
Page1
Page2
Page3
Page4
|
