I’ve been thinking a lot lately about what we’re doing here at U2FP (as well I should). Some of you might not believe it, but I listen just about as much as I talk...at least in this work. I listen a lot to researchers, other foundations and non-profits, my colleagues, clinicians, state legislators and other invested stakeholders. But most of all, I listen to you; meaning those of you who live with Spinal Cord Injuries, and your loved ones. After all, I'm one of those loved ones too.
There are so many varied layers and complexities to this work. And what keeps me focused is what I know from my own experience as a father to a son with a SCI, and what I hear from so many of you. This is a large part of why I am always writing to you about becoming a part of what we do.
Our partners in the sciences and across the larger research and advocacy landscape need us to become more involved; and not just from the bleachers. I’ve told you before that I love movies for the power they have to move us and tell our story about what it means to be human. But they also have great power to influence habits of thought that lie in the shallows of our subconscious.
For instance, almost all action movies rely on a singular, gotta-fix-it-myself-guy (almost always a dude). And he usually fixes things with a gun. It's a hero myth. In other words, in order to fix our problems whatever they are we need a singular sacrificial hero. But what kind of message does that send back out into the real world? I can tell you its not a message that works for solving problems. Especially the problem of paralysis.
Problems are solved by a team, a community, a movement of people. That means US. So resist any thoughts you may have or messaging you may hear (especially if it comes from me) that puts any hero up on pedestal. Because what we need are pedestals big enough for all of US to get us to Cures.
If you're not sure what you can do beyond:
- educating yourself about the science
- calling legislators in our various state initiatives
- wheeling or running in a Team U2FP race
- getting to know SCI Researchers near you - or if you are a researcher, getting to know the SCI community members near you
- becoming a monthly donor
Please reach out to us at firstname.lastname@example.org and we'll chat about whatever ideas you have. We'd love to hear from you. We are going to spend a bit more time at this year's Working 2 Walk talking about some strategic advocacy opportunities, so your ideas will be very valuable to the conversation.