Internaf Newsletter December 1999 Issue
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Life with
A Chair
By Sharon Anderson
Or: I may
have no skills, but somebody still loves me
This entire month, it's been painfully obvious that my declining fine motor
skills are interfering with my ability to do my job. Never mind the rest of my life. I mean, nobody cares if I can't open a twist-top bottle any more.
If I sit there for twenty minutes, using my bare hands, my hands wrapped in a
towel, try to start it by beating on the lid with a
knife handle, wrenching my
mouth out of shape trying to get purchase on it, running it under hot water,
and finally throwing it in the trash, unopened.
Thanksgiving evening, I wanted to wear a festive pin on my shirt. Now, I've
pared my jewelry collection down to pieces I can't bear to part with, because
I can't manage to put them on myself. I gave up all my pierced earrings some
time ago. But I still have a few pins. The one I chose has a long barb to
stick through a shirt collar, with a piece to stick on the other end to hold
it secure. I wanted to put it on in front of the bathroom mirror, where I
could be sure it was straight. Even before I could get the piece off the end,
it went flying out of my hands, missing the toilet by inches. O....kay.
Close the toilet seat lid. I got the end piece off. And nearly dropped it
down the sink. O...kay. Plug the sink so it can't go down the drain. Then I
dropped that itty bitty piece on the floor. I was down on my hands and knees,
chasing it out from under the cupboard overhang, around the toilet, along the
edge of the shower stall....
But like I said, nobody cares about that stuff. In my good moments, not even
me. No. But I was in one of the classrooms that I have a student in. I had
made a suggestion to the teacher on a previous visit for how to approach a
learning task for this student. On the day I came to follow up, the teacher
was absent. But I watched how the staff handled this situation. Well, they
had it all wrong. It was obvious that the classroom teacher either had
misunderstood me, or not informed the staff of my suggestion. So I did what I
could, modeled the proper approach for the staff, and sat down to write a note
for the classroom teacher.
My handwriting is laborious, and barely legible any more. I explained
briefly, asked the teacher to call me, and apologized for my handwriting.
After all, I doubt if she will wonder whether my bad handwriting is connected
to the reason I am now sitting in a wheelchair. I imagine she will be
somewhat annoyed that a teacher of visually impaired kids has such lousy
handwriting. I would be.
Of course, she didn't call. When I called her, I got the answering machine,
which is SOP during classroom operating hours. I left a message for her to
call me. And of course, she never called.
In another classroom that same week, the kids were blowing up balloons and
taping them to the walls for a party. I was afraid that I couldn't help
blow up balloons, or tie them in a knot, but I managed a couple. Came time to
line up for recess. Not one single kid was capable of passing the scotch tape
dispenser without getting another piece of tape, and re-arranging a balloon
that was already taped up just fine. After I watched five repetitions of this
behavior, I wheeled myself over to the table with the scotch tape, scooped it
into my lap, and wheeled myself out of the line of fire. The classroom
teacher immediately said, "Thank you, Miss Anderson." And I felt warm
all
over. Such a small thing. An infinitesimal thing. But it made me feel
useful. Of course, sometimes it's really handy to be handicapped. I could never,
even in the days when I was a TAB, manage to write and talk at the same time.
This made writing goal sheets at annual IEP meetings a messy, unsatisfactory
process. Since most of my kids these days are multi-handicapped (yeah, they're
blind, but that is probably down around #12 of 15 problems), I am very seldom
the one in charge any more. This means I have the luxury of jotting down my
ideas ahead of time on the computer, bringing in a hard copy, and saying flat
out that my handwriting is illegible, and someone else should probably write
the goal sheet. This leaves me free to talk, to explain my thinking to
parents and educators.
Of course, sometimes it's not so handy. I can't carry anything any more.
Unless it can be slung over a shoulder with a strap, someone else has to carry
it. Including my morning tea or hot chocolate, if I stop on the way to the
office. This is downright embarrassing. Yes, my co-workers are very good
sports, and often even offer their services as I get out of the car. But they
aren't always around. The other day, I came back to my office about 1:00. I
brought an orange with me. As I reached for it, it rolled off the seat,
against the door on the passenger side, out of reach. I stood up with my
crutches. I hobbled around to the other side of the car. I opened the door.
Before I could even get organized to make a grab for it, that pesky orange
hopped off the seat and rolled under the car. Damn it! I really wanted that
orange. So there I am, on my hands and knees, using a crutch to poke at the
orange, which came to rest against the wheel on the opposite side of the car.
And too often, it doesn't affect just me, but my students. If they are
school age, they usually come with the proper seating equipment, and There is
no danger of me losing my balance and accidentally hurting them, because I was
trying to support both of us. Of course, sometimes our wheels get tangled up
in each others' way. But there are rewards for that, too. The kids who have
some vision and a little intelligence, and who live in wheelchairs adopt me as
theirs, the first time they see me. Their faces break into huge grins. They
point and jabber excitedly, and it doesn't require their speech to be
understood in order to know what they mean. There's somebody else just like
me. A big person. A teacher. A person of consequence. In a chair. Just
like me. Every time this happens, I realize that we don't do enough for kids
in chairs, no matter what their intelligence level. They do not have access
to the community, except in a very limited fashion. They do not see any role
models to which they can aspire. The first two or three times kids reacted
with excitement when they saw the chair, it was flattering. I'm not flattered
any more. I'm saddened that I am useful in this context. It shouldn't have
to be this way.
And when it comes to preschoolers, I have to delegate most of my
instructional activities. The last time I tried to sit on the floor and hold
a two-year old in front of me so that he could reach for and pick up toys
around him, he arched suddenly, and I lost my balance. We both went over. He
bonked his head. So now, when I make a home visit, I pack my toy bag. Somebody
else carries it out to my car. I get to the child's house. I precariously
crutch it up the one to four steps. Somebody else carries in the toy bag.
Somebody else sits on the floor with the child, while I sit on the sofa,
directing activities as unobtrusively as I can. What was the old saying about
those who can, do; those who can't.....
Last night, I went out to see my friend in a theatre performance. After it
was over, everybody stayed to help put up the chairs and sweep the floor. I
watched people putting up chairs for a while. Sitting in my chair, I watched
them putting up chairs. And I felt guilty that I couldn't help. I felt so
guilty that I took myself off to the bathroom. Not soon enough, however. As
I was standing, stretching, this young man came rushing over, asking if he
could do anything for me. "No, just trying to get the kinks out." He
looked
puzzled. "I get stiff when I sit so long." "I know, dear,"
he responded, and
kissed me on the forehead. At first, I was outraged that anyone had dared
such an intimacy. Then I realized that he thought he was being kind and
loving. And I was outraged for a different reason.
One very sweet thing that is happening in my life right now is that I have a
secret little elf who is leaving me twelve days of Christmas presents on my
patio table, by the door I go into and out of. I can't figure out who it is.
I've asked a couple of people, and they've denied it. This morning, I was
home. I felt certain I would triumphantly discover who this elf was. But
the elf must be magic, because one minute my patio table was bare. I went to
do something in the bedroom, and when I came out, there was a package.
Today's package was five kiwi fruit. I don't like kiwi fruit. I loved the
gift, I was ecstatic that someone thought of me. But I do not care to eat
the kiwi fruit. So I called my neighbor. After I identified myself, she
demanded to know what I wanted, because she had just got out of the shower, and was wet. Taken aback, I suggested that she call me back when she was dry.
A few moments later, my phone rang. "What do you want?" she asked.
"My hair
is still wet, and I'm in a hurry." I asked her if she liked kiwi fruit. She
said yes. I told her I had five on my dining room table, if she wanted to
come down and get them. "Can't you find somebody else?"
I thought back to my last few interactions with her. Yesterday, I was
unloading my car as she was coming downstairs from her apartment. I paused to
say hello.
"I'd help you if I could, but I can't right now, because I'm late,"
she said,
and got in her car and drove away. I had not asked for her help. I had not
even intended to ask for her help. I was annoyed.
A few days ago, she called and asked how she was supposed to get online. I
asked her what service she had signed up for. She told me. I asked her what
the helpline number they had given her was. She didn't know. She had signed
up with one of those cheap, non-local, install the cd and good luck to you
services. I told her I was not familiar with that company, and couldn't give
her any help without trying a few things on the computer. "Can't you come
up
here and do that?" She lives at the top of fifteen stairs.
Now she has (several times) bestowed upon me the leftovers from her various
dinner parties. Sometimes she calls and asks if I want them. Sometimes she
just shows up at my door. Usually, they are things I don't want.
"I thought I would return the favor of food, since you frequently bring me
treats," I said, referring to the kiwi. "I wish you could find
somebody
else," she replied. It was obviously too much trouble for her to come
downstairs and get the food.
I realized that I am no longer useful to my neighbor, except as a receptacle
for her leftovers. There was a time when we used to drive around and look at
nursery plants, wishing we had the money to landscape our condos the way we
would if we were millionaires. There was a time when we used to go for ice
cream on hot summer nights, and sit on the plaza, and watch the tourists go
by. There was a time when we used to go walk around the trailer park
together, as our daily exercise. There was a time when we used to argue
whether Pacific Palisades and East Los Angeles were both in the same
hemisphere of the planet. She grew up in a monied family, fallen on hard
times during the depression, but still, a family that made its income from
renting out rooms, being a motel on the west side of Los Angeles. This
family had its own library in the house. It had treasures collected from all
over the world. Most of her family had been to college. I grew up in the
fifties and sixties, and was the first child on either side of my family to
graduate from high school. My parents' idea of great art was a Norman
Rockwell cover on The Saturday Evening Post. Betty and I came from two
different worlds. We had lively, often provoking, discussions. We enjoyed
each other's company. Obviously, that's all over now. I will miss it. It
makes me sad. We didn't even have a fight or a falling out. I am just no
longer useful to her.
My friend Carolyn will be moving in with me over the course of the next month
or two. I am relieved. There are so many little things which are becoming
difficult or impossible for me to do for myself any more. And while I will
cherish her company as well as her usefulness, I am sure there will be times
when we grate on each other's last remaining nerve. I also do not want the usefulness to be only one way.
I have been reading a book of essays,
"Restricted Access: Lesbians on Disability." One of the essays
addresses the
idea of mutual help, of doing whatever you can, as you can. The author says,
"My lover does my dishes. I write her letters." I can't even offer
Carolyn
that service. She is a published writer, an author (among other things) by
nature and by choice. It would be presumptuous of me to offer this service.
So I will be struggling to find out what I do have to offer her.
And getting back to the dregs of my teaching career. My boss and I are
exploring a few ideas, trying to extend my usefulness one more year after this
school year ends. I'm not sure exactly what or how I will be doing, but we
are looking at options.
Still. There is my Elfin Santa. And this last week of school, I got all
kinds of seasonal little gifts from parents and teachers and co-workers.
More than any other year, I think. So either it's the gimp principle, and
people feel sorry for me, or I'm doing something right, and somebody loves me.
Pardon me if I take the more optimistic view.
Support
-- By Joe Villa
It took Noah
Webster over 20 years to write The
American Dictionary of the English Language.
He realized, though, that the dictionary would never be finished and it
would always change. New words
would surely be added, as well as new meanings to many of the existing words.
Why do I tell you this? The
reason is because of the onset of a discussion on language and of being politically correct
exploded onto the forum, this past summer.
This is an old discussion I know, but it can be beneficial for us even
now. For certain, I agree with one subscriber when she said, “I'm
glad that at least on the topic of the language we use to describe ourselves,
people are at least being civil and saying, "I disagree" rather than
"You're wrong, you'll burn in hell fire, and can I help you pack your bags
so you can get started sooner?"
When
a subject is clearly understood by all, agreement is nearly unanimous.
For instance, we all agree that with our diseases comes pain. There
is no dispute. Sometimes, however debates over unclear subjects can bring
animosity. Debates fueled by our differences like that of our sexes,
languages, cultures, political and social backgrounds can be damaging.
I urge everyone to remember that understanding our diseases is not part
of the majority of the world. Think
about the time you tried to describe yourself to someone, why even amongst
ourselves there is notable dissension amongst the ranks.
I have to agree with one subscriber, who said, “I
am not an fa’er…I am a person.” People
who are disabled do have special needs and yes we do suffer
from our diseases. It is
the ignorant that attach labels to conditions with a condescending tone.
As a subscriber had this to say, “I
guess I'm with … on this one, as I simply detest all forms of "political
correctness" as the rather inane attempts at "feel-good" wishful
thinking they usually (but certainly not always) are. I just prefer reality and
facing my rather obvious limitations over emotion-based ignoring or minimizing
them. But others make a different choice and that’s fine.”
If
we take apart the word “disabled” I really do not like it. Not because of the meaning, but the connotations that are attached to its
meaning. I see most words as
neither good nor evil. It is the
thoughts or intentions that do the hurting. According to Webster “ability” is the “physical, mental or legal
power to perform.” So disabled must mean the inability to perform, because of
the lack of physical, mental or legal power. However, I agree with this subscriber, when she said that being a
disabled person is not a bad reference to our capabilities. As
she had this to say, “Yes,
handicapped and disabled do mean the same. However,
handicapped, has a meaning outside the dictionary meaning. When people see this
word, they think of a person in a w/c that cannot think or do anything by
themselves. It's learned on the playground. Kids see a person in a w/c, and they
have to make fun of them, call them names, because they are different. To me,
disabled, doesn't sound as harsh or remind me of those kids on the
playground…”
One
of Webster’s definitions of “support” fits in nicely here where he puts,
“as to COMFORT”, because I think we all face the inability to perform, as we
would like to. That is where the SUPPORT of others who are
in the same boat (per say) is the most beneficial. As this subscriber said,
“YOU
ARE my International support group - many of you have become my friends -
in-person, cyber or both.
In
closing I ask that you try to always keep a smile on your face, emanating from
your heart, because a wise man once wrote, “ a joyful heart is good
medicine…”
Just
a thought and God Bless!
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