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.