Yesterday, we were expecting company from out of town for dinner and I had nothing we could legitimately serve. So, after dropping off my daughter at the orthodontist to get her braces off, I scurried to the local store to get the needed supplies. When I walked in the store, there sat a young man in a wheel chair. He reminded me of one of my students from a far away time when I was Ms. Green and taught multi-handicapped high school kids. He was wearing an apron from the store but turned away from the door, staring at nothing in particular and seeing no one in particular.
I tried to give eye contact and said "Hi!" He contorted himself trying to turn towards me, but the angle was too much. I waved and looked around. A young man was leaning against a stack of water bottles talking on his phone. I guessed he was the job coach.
Now as a rule, I know from Special ed, you try to not help as much as possible on a job site, to let the student anticipate and solve problems because the goal is self sufficiency. But anyone looking knew this was a made up job that had no prospect of being self sufficient and that both the coach and the trainee were bored out of their minds and not actually being present.
Walking up and down the aisles, through the bread, the pasta, the cereal, the meat, I kept coming back into view of the young man in the wheelchair and the coach still on the phone. I kept thinking about how the philosophy of Special Ed so often got dropped when practicality showed up. Any job was a good job and better than nothing. I felt mad that this student was sitting bored in a store. This "job" might be what people considered an opportunity for people like my son. Work sites for people like this young man, like my former students were hard to come by.
I remembered as a teacher with four kids with Cerebral palsy and severely atrophied muscle mass like this young man asking why we weren't taking these folks to the pool every day to stretch them out and help their muscles relax and release when there was a Y just next door? It would require too much effort on the part of staff. Wouldn't that be age appropriate in the summer? No. Kids their age worked so we had to simulate work. On one occasion when I pointed out no one pays for simulated work and that it was a waste to pay people to supervise simulated work when we could be doing actual work helping the kids do actual things that would actually benefit I got nowhere. "You're young and idealistic." I was told.
We had to keep them in a simulated workshop putting caps on pens. "Why did they need to put caps on pens?" I asked. It didn't have to be pens I was told, but this was repetitive, it was a possible task, definable, measurable. A fellow teaching assistant and graduate student chimed in, and said it was stupid, meaningless, boring and unnecessary especially when it meant we had to go to the next room where they couldn't see us undoing all their "work." Inclusion was nice in theory but reality always seemed to require preconditions of somehow not having or appearing to have the handicapping condition.
I didn't want my son or any child to face unreal work with the equally imaginary benefits. I believe in inclusion and in meaningful work. I believe people are included when they do meaningful work. I also believe if one can't do meaningful work, then the work done to provide comfort and integration should be meaningful play or recreation or therapy. Surely there was something in between the no effort of this show job and the too much apparently required of a fully immersion based recreation program. There must be something that is closer to acknowledging the reality of this person's disability (he can't do what they've assigned him to do) and the equally important reality that he interact and be brought into the larger community.
What this type of job assignment revealed was a dearth of imagination, coupled with good intentions and zero expectations of any outcome or improvement. I'm no longer young on this point, but I still think if we aren't shooting for the ideal, why are we wasting our time having ideals at all?
Walking through the aisles I wondered what to do. Should I say something? Why did I feel compelled to say something? Why did I have to have to have to say something? I knew I was going to. Why did it have to be me? "You have the degree and the background and you see it and you will see it again with your own son if you don't." was the answer. "But it might just be the end of a shift. It might be a down day. The kid might be sick or tired or the coach might be a sub." All my excuses weren't enough for me as I came by the sixth aisle, the young man still motionless and facing the ads of a Chevy Chase bank, the coach checking his blackberry. I knew I was going to say something. Go back up the aisle Sherry. Prayers. Prayers. Prayers. What if this were my son? the question burned. Darn it. I'm going to have to say something.
Then I saw just the man in the wheelchair, no coach. This made me nervous so I went to the young man and said, "Hi there! Who is with you?" presuming that I had made a mistake in thinking the other person was his coach. In bounded the job coach from outside, "I'm here. I didn't leave him. I just went outside to place a call."
"I've seen you calling. You've been on the phone the whole time I've been in the store."
"I'm trying to arrange transport. He's a greeter."
"Well he's not facing the people who come in the store."
"Well I can't take him outside, the heat would kill him."
"He's inside, he's still not greeting anyone."
"No one is in the store to greet."
"I came in the store. He didn't greet me. There are other people. You didn't notice them because you're on the phone. He can't notice them because he's facing the wrong way."
He talked about how hard it was to get Metro to come in a timely fashion. Now this I knew to be true but still, pointed out that the student was obviously bored and that defeated the purpose of having him be out in the community greeting.
He then motioned for me to walk away with him for a few minutes to talk. "I'll be right back with you in a minute buddy okay?" he said in an over enthusiastic tone I suspect for my benefit. The young man turned a bit and made a noise.
Then in hushed tones like he was disclosing state secrets, the coach explained, "I can't talk about his condition because of state regulations."
"I don't need you to talk about his condition. I can tell he has CP, some ataxia, atrophied and frozen limbs, paraplegic and non verbal."
"He's also Chinese, so their culture doesn't always mean they greet or socialize willingly. I've been working with him and his family here at this site for him for three years." That thought frightened me. Three years of boredom, three years of staring at walls waiting for someone to talk to him, three years of pretending that this was somehow therapeutic. Doubts moved into my brain, "Why are you bringing this up?" my hyper critical self was starting in. But the student looked bored and did not move his head when several people walked in, and that sealed it. If in three years, he had not come to instantly respond when the cue of a someone coming in the door to offer a greeting, it was not likely to suddenly start occurring, background culture or no.
"I don't know about all that, I do know that his sitting staring at nothing as a greeter, doesn't help him and doesn't make you look good." He apologized, repeatedly thanking me for my concern, and understanding where I was coming from and went back to his spot near the student. He re-angled the wheelchair so the student faced the entrance and pointed in a manner too animatedly at the next person who happened in the door. Better. Nothing to get excited about, but better.
My time was short for shopping so I had to rush through the rest of it. When I finally checked out, the coach and his charge had left. The thing is, students get this sort of non job job all the time. It's hard in this economy for students with even only moderate to mild disabilities who are verbal and physically ambulatory and self sufficient to find actual jobs. Part of it is we are still trying to shake of the old model of simulated workshops found even at graduate school training sites. We still think simulated jobs somehow equal dignity and actual jobs. We still think inclusion means simply the students aren't locked up and hidden.
Having a handicapped student act as a feel good prop to a store isn't a job. Watching a student act as a feel good prop to a store isn't much of a job either. It's unfair to the students to give them these jobs they cannot do which perpetually frustrate or eventually bore. It's also unfair to the coaches who must sit or stand and facilitate something in perpetuity. They'd both be better served for the Metro bus to take them to the library to either hear a story read or have the coach read to, to go to the Starbucks in the grocery store and split a muffin, to field trip to the pool once a week for exercise and maybe go to a free concert at lunch via mass transit once a month like real people with real jobs and lives might do once in a while. Inclusion means living, relationships, real stuff like errands, like friends, like eye contact and conversation. These are not found in staring at the wrong wall when strangers walk by or a room where the work is undone as soon as it is finished.
Maybe we should stop pretending this unideal situation for people with disabilities is the best approximation we can make of what we profess to hold true, that inclusion matters. Maybe we should start aiming for something higher than tokenism, symbolic work or simulated work. It isn't enough to park a kid in front of a door and act like a crazed loon to encourage the student to give eye contact every time someone comes in, and it isn't enough to park a kid in front of a door of a place and presume if a the kid makes a sound when someone walks through that they've "greeted" the customers.
Neither is a true assessment of what is taking place or of what one hopes will occur as an outcome. What we want, is these handicapped individuals to be viewed as individuals worth knowing and with lives that have zest and fun and relationships in them that matter. We want people to say, "Hey Eddie," or "Hi John" when they walk in the door and see their friend who greets people. Honestly, if I'd seen the kid loving greeting everyone that came in the door, I'd full on shop there just to see that moment of joy; but here was the dullest form of dutiful drudgery being mistaken for charity and outreach and being maintained under the theory that it was inclusive and a job. It was as real as the workshop here you put the caps on the pens task. They can do it but so what?
I don't have a perfect solution or answer other than if it feels fake, it probably is and shouldn't be acceptable; that at least, these jobs should not be considered better than nothing. These jobs were nothing but well intentioned nothing.
