WEARING TWO HATS
While it seems as though I have been a teacher "forever" (or, for at least
the past twenty-seven years), I have only recently begun to actively view
my teaching responsibilities through the additional lens of having a rare
disability - Moebius syndrome. Because Moebius has, for me, been equated
with the powerlessness of being teased, being "the only one," and feeling
"different" I have never really felt strong enough to advocate for changes,
especially if such advocacy may have any unknown "risks." Fortunately for
me, that attitude has changed. I now feel quite proud that I "wear two hats"
-- that of an educator and an adult with a disability. Here's one reason
why ...
I have already jokingly predicted that my headstone will be a toilet. Not
that the toilet symbolizes something dirty or vulgar, but that it is, quite
literally, what I have been fighting for, during the past several years.
This toilet quite literally symbolizes both self-dignity for the individual
with a disability and awareness for the educational community in which it
is needed.
I teach preschool children who are affected with physical or health impairments
for a large regional educational agency in California. Two months after starting
to teach this class, I found ourselves moving to the middle school next door.
We moved to a "portable" bungalow with no water or access to a playground.
Our bathroom was the staff men's room (to be used on THEIR schedule). The
cafeteria consisted entirely of picnic tables, with trash cans at one end.
As a result, we ended up eating within the classroom (we heated bottled water
in a coffee pot for dishes, washed them and then threw the dirty water out
onto the dirt outside). Toilet training went down the tubes. We merely diapered
children within the classroom. Since I was still the "new kid on the block,"
I was trying to err on the side of patience ("they care about the kids, they
just can't....") and ignore the deplorable conditions.
That thought wore thin after a month. I started calling the new classroom
"Bosnia," in honor of its modern conveniences. I finally sat down and wrote
the principal a nice letter, detailing the problems, suggesting solutions,
etc. I could have gotten an "A" for diplomacy and tact.
The principal responded, "We're working on it." That began to mean the same
as "the check's in the mail." So I filed with the state of California. My
employer was endangering the health, safety and welfare of the children.
I naively thought THAT would be all I needed to do. One person from the
educational agency even came out, saw the "Problem," and responded with,
"Geez, we have many places like this -- what's the problem?" I practically
had to stop myself from replying, "Give me their addresses, etc., and I'll
add them to the complaint!"
The state threatened to take away all funding if the problems weren't fixed.
Several of us met a few days before the deadline. Once again, I carefully
delineated the problems (lack of water, playground, toilets, etc.). The director
of special ed asked me, "What can you do without?"
"HMMMMM...", I thought. "Would such a question 'fly' in general ed? Would
parents want their school people to ask them, 'what can you do without?'"
But, these kids weren't in general ed; they were in "special" ed. I smelled
discrimination ...
About this same time, media coverage for Chelsey Thomas (the "Smile Girl")
was at its peak. I knew the power of the media, so I decided to take all
the papers I had received regarding lack of accessible toilets, sinks, playground
and cafeteria, and develop a "media kit," along with a cover letter and send
it to all the local "powers" (newspapers, radio and TV stations, disability
rights groups, politicians, Boards of Education, etc.).
Within a week, I had a new classroom. The new principal even asked (with
awe in his voice), "Where DID you get that long list?" (I included names
of every person and organization who received the material at the bottom
of my letter -- a twisted sort of "peer pressure").
Once again, I naively thought the battle was won. It wasn't. The director
of special ed said, "You'll never get a bathroom." I also learned that the
state of California had screwed up their own investigation of my complaint.
So I wrote to the Assistant Secretary of Education, Judith Heumann and described
the situation. I also attended a public Board of Education meeting, where
I shared information about the inadequate facilities for the children.
I doubt that anyone would ever consider me "politically correct." In fact,
there may have been other ways to get the much-needed toilets, sinks, playground
and cafeteria. I only knew that these children had the RIGHT to use facilities
suitable for their needs. There was nothing even remotely "extraordinary"
about this!
Thinking that IEP's were truly legally binding documents, I always included,
when appropriate, the phrase "...will learn to sit independently on a toilet
that is appropriate for his physical needs," etc. (I read somewhere that
when an IEP is signed, the goals and objectives are supposed to be implemented.)
By now, you must be getting tired of this toilet tale, sink saga. Are you
wondering, "when will it ever end?" So do I!
Because the parents of one student actually wanted their daughter to learn
how to use the toilet (how novel!), I shared the whole story with them. THEY
filed with the state, naively thinking THAT would make for some action. (We
had already INSISTED that some people with decision-making powers attend
their IEP and tell us the status on the toilets and sinks).
The state sent down a gruff-looking man who didn't know anything about children
with orthopedic impairments. We were to have a BIG IEP meeting to discuss
toilets and sinks. His first comment to me was, "I understand you are
uncooperative!" I replied by saying, "And I'm not too politically correct,
either!" Even though the IEP had been signed, sealed and delivered, no one
had the faintest clue as to how to make a school bathroom accessible. I suggested
they contact our local physical therapist. She could look at the bathroom
(plus my collection of four adapted toilet seats and foot rests) and suggest
how things should be adapted. A work order was written up in January. ("DUH!
Why didn't the Director of "Special Ed" think of that IN THE BEGINNING?)
I also filed with the United States Department of Education, Office for Civil
Rights. Once again, I sent them my paper collection. It took a great while,
but I finally heard from them. As of this writing, their team has bluntly
told the regional educational agency (STILL my employer:)) to get the toilets
and sinks fixed YESTERDAY. They also want them to do some other things, like
show their "plan" on how to implement an IEP, especially when the IEP calls
for something novel like an adapted toilet or sink.
It's now almost four years since I began my quest for a toilet, but EIGHT
years since children with orthopedic impairments were first placed on these
two campuses. The toilets and sinks at the elementary campus look virtually
the same as they did several years ago -- virtually inaccessible to all but
the most independent of students.
The powerlessness that I once painfully felt has been metamorphosed into
a power that has as its very foundation the powerlessness and weakness which,
at one time, hurt so very tremendously. I'm not a "Joan of Ark." I know and
respect the need to maintain decent relationships with administrators and
fellow staff members. My focus is on the materials that are needed rather
than the personalities involved.
But this "power" goes beyond merely getting a toilet and sink. For I owe
that child who once was me the understanding she so needed but never experienced.
The teacher that I have become can be a conduit for understanding because
she, at long last, has embraced the incredible knowledge gained through
powerlessness.
Copyright © 1999 Sandy
Goodwick. All rights reserved.
|