How do we create longevity within a movement?

We foster community. We connect. We find joy together so we can fight together.

Simon Rosser, PhD, MPH made me hip to this concept over a conversation we had during production for SUBMERGED. I was interviewing Dr. Rosser about his involvement with AIDS activism in the 80’s and 90’s, how their community accomplished what they did, and the things we, as the SCI community searching for a cure, could learn from their efforts.

So for a while now, I’ve been pondering this question within the effort for a cure.

• How do we stay with it and not get burnt out?
• How do we keep our sweetness and avoid becoming bitter? Especially when we’re battling with:
  • pain—be it nerve pain or heartache
  • freedom— to move one’s body or to exist equally
  • identity—feeling seen and feeling like oneself

There are so many layers to these questions that we as an SCI Community confront daily.

We so often exist on a future-forward plane—always striving for more, for something “better.” Always reaching for something, oftentimes missing out on the beauty of our life experience because we struggle to fully see it, amidst the haze of our out-of-focus dreams and desires.

But we all dream.

We all have hopes and goals that motivate and inspire us, that put us on our path of purpose. And therein lies the need for grace, balance, and the oh-so-elusive sense of presence.

All we have is right now, the present. Which is what I keep urging myself to come back to when I get caught up in what I WANT— which is oftentimes, admittedly, getting my body back. I can get so caught in the dream that suddenly, I’m trapped in my daydreaming mind, seeing myself in a body that, in reality, is no longer mine.

And in that moment, I’ve made myself a victim of my own stuck-in-the-past/future-forward playback, desperately reaching for the pause button in hopes to re-calibrate and come back to center, somewhere near contentment and happiness while staring down at my feet on the foot pedals of my wheelchair.

We dream, we wake and we dream again.

We can all easily get thrown off course, especially the dreamers. It’s easy to feel that we’re failing, over and over, or that we’re off track. To dare to dream, we have to remind ourselves of the things that we CAN do, the things we’ve accomplished and can be grateful for, and how to enjoy life for today, or else the bitterness seeps in.

Whether we’re at the Capitol, fighting for change, or in the lab, battling the secrets of science—in all its solitude, darkness and do-overs—we’re all hitting a reset button in order to keep dreaming.

There is a synergy, a reconciliation that has to happen with the past, present and the future—as we’d like to see it—no matter who you are, but especially when you’re fighting for change.

For many of us, this is where advocacy, activism and artistry collide.

As you probably know, Working 2 Walk is just around the corner (Oct. 22-24, register here), and this year, per covid, we’re going virtual of course.

But we have a new and exciting addition to the agenda. This year, we decided to reach out to artists within the spinal cord injury community and ask them to share their process and their work with us. And we found quite the crew.

Along with presentations from researchers, activists, and other medical professionals, we’ll be featuring presentations and interviews with incredibly talented SCI artists from around the country, including:

• Eric Howk, guitarist from Portugal. The Man
• Richard Bell, award-winning painter
• Jesse Sinz, mouth painter and graffiti artist
• Ben LeClair, former pro wakeboarder turned filmmaker
• Freaque, musician and performance artist

We can’t wait.

We see this new element as a way to further connect and engage with our SCI community, and empower each other as we elevate our individual and collective voices and talents towards curative interventions.

Art affects us, sometimes more than we know. It moves us, shapes us and tells our stories. We remember songs, photos, or films that made us FEEL something. We get to see a person’s truth in sound, movement, stories, shapes and colors. Through art, we show people who we are, where we’ve been and where we can all go, collectively. What a powerful tool that is.

THIS is part of the effort to increase longevity by feeding our sense of community.
THIS is sweetening the journey on our way toward a cure.

And this is only the beginning. Things are cookin’ and we’re stoked to see what’s in store as we continue to develop this part of our U2FP community.

See y’all at Working 2 Walk!