"Turn here, yeah, right here," I was animated and pointed quickly to the turn I wanted Joe to make.
"Are you sure this time," he asked and I was afraid to tell him that I really wasn't.
Again, I'd got it wrong. How could that be. The place is so clear in my memory. My first real job working with people with disabilities was in a smallish institution called Glendale just outside of Victoria. I had driven there a hundred times, now I couldn't find the place. Maybe it's because the area has changed so much, maybe it was because of the dark, maybe because we were tired.
"Why do you want to go there anyways," Joe asked. I explained to him that my whole career started there. My real education in the real world started there. I just wanted to see it again. As we hunted in the dark I remembered so many of the people who I met there. I remember precious few of the staff, Antoinette, Win, Debbie ... that's about it. But I really remember the guys that I worked with.
My memories have changed as I have changed. As I came to understand the instution as a place of captivity and abandonment - my sense of what I did there changed. My sense of who those men were changed. But I still remember them fondly. They were survivors, they lived their life waiting for what we couldn't even imagine back then - community. When I got there they had all been 'in' for years. They had adopted the institution shuffle, they wore institution fashion, they behaved in ways suitable to where they were and what was expected of them. None had an air of resignation about them, all woke with hope and went to bed with optimism. They were amazing.
I remember the Down Syndrome World Congress that I had the honour of keynoting last year. I flew in on the last flight and woke up frightened. This was a big deal, a big lecture, and my nerves let me know it. Joe and I arrived early and set up some books on a table in the exhibit hall and then wandered around a bit. We stopped and looked out the window at a huge cruise ship docked right by the convention center.
I heard a slight sound, a sound that could have been made by Cindy Lou Who, and turned to see a bright eyed little boy. He stood clutching on his mothers leg as she stood chatting animatedly with another woman. He had made the sound, I think, because we had blocked his view of the big ship. I tapped Joe on the shoulder and he immediately noticed the boy, smiled, and we wordlessly stepped out of his way.
Seeing the boat again his eyes grew wide and his smile wider. I don't know what was happening in that little boy mind - but whatever it was, it had nothing to do with Down Syndrome. It had to do with being a little boy looking at a big boat. I waved at him and he glanced at me and raised a little fist. He was to young to wave and to young to understood that he had given, by accident not design, the symbol of power, pride and resistance - a raised fist.
As we drove through the night looking for the institution, I asked Joe if he remembered the little boy and the boat at the conference in Vancouver. He said that he did. He asked why I had brought him up. "I was just thinking," I said, "about him and his life. He will be so different than those we caged in Glendale. He just had to reach out and Mom was there. Remember how tightly he held her leg with one little arm? He won't spend a lifetime walking down hallways looking for someone who's not there. I remember his mom reaching down and absently stroking his hair. A loving touch. His life will be so different."
Seconds later, I gave up. "Let's go home, I don't think we're going to find the institution."
Joe pulled into a driveway and turned around.
"About that little boy," Joe said and I turned to him, "I hope it's like this for him. I hope that if anyone goes looking for an institution for him - they won't find one. Because they'll all be gone."
"Yeah," I said, "I don't think I want to find it anymore myself."
I remembered that little fist raised.
Power, pride, resistance. That's what he's going to need.
Raise your fist little man, then look behind, you no longer stand alone.