We went on a pilgrimage the other day. I picked up my son from Best Buy. I say that like it is easy. It took 20 years of very hard work for him to be able to work at Best Buy. He's behind the counter at the Geek Squad 3 hours a day, 3 or 4 days a week, installing software and preparing computers for delivery to customers. And he's good. He never makes a mistake. He's dependable, good-natured, and curious. He learns very, very quickly. And he is barely conversationally verbal.
When I picked him up, he asked to go to the special education center where he went to pre-school. This was a long process. He said, "Go." I said, "to..." He said "Go to...." I said "where," laughing a little because I'm not sure that "where" is a concept to him or a conversation prompt at all. He said, "go to..." a few more times. I repeated, "go to..." and a few minutes later it came out. He wanted to go back to where he had been when he was little. A few years ago I would have been thinking nostalgia and old home week. I knew, now, though, that it had something to do with the building mechanics. Something had changed there (thermostats - how did he know?) and he needed to look at every thermostat in the building.
So we went. I took a deep breath. I don't have time for this. I live in a real world where I have important work to do and a schedule to maintain, but it was important for him to go - important enough that he took the energy it took to ask me to go there. And he's 20 years old and needs some self determination whenever possible. So, we stopped and I started explaining to one more person that he wanted to see the thermostats. And instead of being dismissed or watched with hesitant distrust as he looked very carefully at each and every thermostat and wire, the person at the office said, "Great! Just wear the name tags!" We walked around. He grinned at the thermostats.
A few people remembered him from when he was small, but most did not know him at all. He's large - 6'2" and 285 lbs - a bit scary for strangers to encounter because he doesn't really speak much. But there, in that "strange place," we were welcomed. We walked from room to room. People wanted to meet him and hear about his story. People let him walk up to the thermostats and look at them carefully, and to trace wired and wireless networks through the building. They smiled. They were overjoyed to see him and to see his interest in the building.
We went to the room where the most disabled children go to school. One girl was lying on a bed, hooked up to a monitor that was allowing a feeding tube to feed her. Phil went up to the monitor, completely ignoring the person. Of course, just about everyone would completely ignore the person. That's what we do so as not to be rude. And Phil, routinely, ignores just about everyone. But he was fascinated with the feeding monitor. So, he stood there and watched. He stood there for a long time, very close, very interested in the little girl's monitor, and through that, in the little girl.
Yes, they "put away" people like that - people like her, people like him - but not there! There, people asked him if the monitor was OK. He said, "Calibrate the battery." And the battery monitor was, indeed, not calibrated correctly and it showed the wrong percentage of battery life remaining. It didn't really "matter" - she was fine - but it mattered to him that everything be correct. And I wonder. Did it matter to her, to the little girl, that someone had walked right up to her, not afraid of "what" she was but so interested in her monitor that he stood right next to her, watching and looking, carefully, at how she was being fed, silently, through a tube, propped up against cushions. Could he SEE her in a way that none of us would ever look, or was it, for him, about a "machine" in a way that makes me uncomfortable when I think about my own thoughts about this Person? Was there something happening here, on some other level? Was it some mutual healing back and forth between my son and this little girl - a communication that none of us will ever understand? Knowing each other to be "human" in ways that no one really thinks of human? He stood close. He made sure she was receiving her nourishment. And it was all about the mechanics.
What IS "life" - not in some abstract way, but in our lived reality? How do we live in the dialectic between "inclusion" in the integrated society, and "comfort," for all involved? Questions, swimming in my mind as I drove my son, "to the home, please."