Institutional memory, Frank, and the Very Nervous System

Around 1990 I covered a story for CBC Radio that inspired the kind of work I'm doing today. I think it was 1990, but I've spent hours researching and haven't been able to pin down the exact dates. Some of the principal characters are dead, and others have only vague memories.

I was a freelance radio reporter at the CBC in Vancouver when I learned of a music program being run out of Pearson Hospital—an ancient extended care residence in south Vancouver, the kind of place that would soon be shut down, but was still a horrific reality at the time. Frank lived there. He slept behind a curtain on a ward where he had no privacy and was totally reliant on others to feed him, get him in and out of bed. He breathed with the help of a ventilator.

Frank had started showing up to weekly band practice, where some slightly less disabled musicians were learning to make music using the electronic instruments of the time—drum kits and keyboards. Somehow the group had got hold of something called a "Very Nervous System": a computer attached to homemade video cameras that would "see" a performer's movements and convert those movements into sounds. The creator was an artist named David Rokeby. As I recall, the system was designed for a jazz ballet troupe—the idea being that jazz dancers would create the music they moved to, a wild freestyle jazz.

Someone got the idea to point the cameras at Frank instead. It was mind-blowing. This guy who could barely move his head would somehow manage to rock his body back and forth in his wheelchair, no more than a couple of inches in either direction. He spoke in a near whisper, but he figured out how to make these faces, and the Very Nervous System would convert it all into this joyous jazz cacophony. Seeing and hearing Frank made anything seem possible.

I went back to watch for several weeks in a row. I did stories about Frank and the Very Nervous System for the radio. I tried—unsuccessfully—to convince CBC to send TV cameras to show the miracle taking place once a week in this sad old hospital. This was before smartphones. Today Frank would have gone viral.

One week Frank didn't show up for practice. I went to his room and found him in bed in the early evening. It turned out he'd gotten tired earlier in the day, so he'd asked staff to help him get into bed. There was a rule about him only being able to get in and out of bed once per day. Now he was afraid to ask his staff to get him up to go to practice. I helped him get up and dressed and we went to the music room together.

Eventually, I think Frank got to perform with the Quebec jazz fusion band UZEB on a stage in Vancouver. I wasn't there—I only heard about the concert second hand. I think I must have been travelling. The point is, people vaguely remember Frank and the Very Nervous System, but I haven't found any proof it happened. Sam Sullivan, the future Vancouver mayor, was one of the other musicians at Pearson. He remembers—although he doesn't recall being at the UZEB concert.

This is the tragedy when institutional memory is allowed to wither and die, especially in a field like disability arts, where staff turnover is especially high. Staff move on. Innovation is forgotten. Progress slows to a trickle. How can we build on the past when the past is forgotten so quickly? That's why it's demoralizing to visit programs where what was once possible has been reduced to time-filling—with no one left who remembers what came before.

Punkeye Pictures exists in part because of that gap. We're trying to build systems that preserve what matters: the work itself, the structure that makes it repeatable, and the documentation that lets the next person pick up where the last one left off. The goal isn't novelty. It's continuity.