Barry Munro wheels up to take the microphone.
I’ve been injured for 31 years, and I’ve been on this journey for a long time. We all share a common journey together. I wanted to look back at where we’ve been as a community, about lessons learned, starting with what happened to me. August 1987, I swam in a lake where I’d been many times before, but this time the water was low, and I hit a rock.
Doctor: Barry, you’ve broken your neck. You’ll never walk again.
Then they all left the room. Later I realized it was so that 23-yr-old me could cry. Later I started to ask why it is that they can’t fix me. Why? Why are they not trying? I asked an ICU nurse … and she asked me, “What are you going to do about it?”
Later I heard about an organization that was working to try to fix this … they were meeting in the dark, in a basement. They had to because they’d been told that if they met openly it would be instilling false hope. 1987.
I met a guy named Charlie Warner, an early peer mentor and advocate. Asked him what the plan was. Charlie said, “Two things. Convince the world that it’s possible. Raise the resources to make it happen.” We were voices in the wilderness. But during the next few years things started to change. Christopher Reeve came along, and it became a matter of “not if, but when.” And suddenly it was okay to talk about a cure. Reeve did that.
And yet there was so much fragmentation in the community, and still is. So the question became, how do we galvanize this? How do we get it together? Does the AIDS analogy work? I started looking at the AIDS movement, and what I heard and saw was that in the AIDS movement, two things happened that we have to adopt. We have to advocate and align.
Advocate and align.
“Advocate” is about our stories, and each of us has one. Look at the SCI foundations … they’re all named after one single person, one person whose story was inspiring enough to move people. I’m 31 years injured, and I have lost friends to secondary complications. We need to talk about that (image of Reeve on the screen, taken not long before an infection killed him).
So how do we align? I’m not up here with a magic formula. We have to build the infrastructure that allows us to work together and truly become one community. Tell our stories, form relevant connections. Everyone should be at the table, including, hey, the automobile industry. Why not? A majority of injuries happen in cars.
They told us that we’d never walk again! So I’m asking you, “What are you going to do about it?”
Enjoy your weekend, folks. Take care.
Matt’s back at the microphone. Talking about the effort to get state funding … in MN the first year’s funding was $1 million. One of the things that paid for was a study on epidural stimulation that focused on autonomic function and included NO Rehab. So please welcome Dr Andrei Krassioukov.