When I attended Working 2 Walk last October, Barry Munro (CSRO’s Chief Development Officer & a U2FP Board Member) shared words about us being the “stakeholders.” Those words have really stuck with me.
I’ve been thinking more and more about the weight of our influence on the effort for Cures. And by “us” I mean those of us who know what it’s like to sit in a chair; I mean the able-bodied warriors who stand beside us, eager to make a difference and fight the good fight.
I’ve always said that spinal cord injury is not for the weak at heart. It’s true, people have come and gone since I became a quadriplegic (tetraplegic), but it’s the strong who have survived. It’s the people who realize this life requires patience, open-mindedness and gratitude who have stuck around.
Without these things, the loss, the negatives and the painfully long transitions will drag us down, and SCI will win. And that’s just not an option, at least not a good one. So we must find our path — the path we’re capable of clearing in order to reach new destinations.
We also must take time for gratitude. Gratitude for the things we are blessed to have, and for the things we’ve accomplished. Because let’s be real: it was a battle to achieve them, no matter how big or small. And we need to appreciate that with this SCI “club membership,” we gained an invaluable perspective on the effort for a cure.
I’m sure many of you have seen the news from UC San Diego regarding their work with 3D Spinal scaffolds. It’s an incredible achievement. For the first time, these medical researchers have used 3D printing technology to create a synthetic spinal cord and implant it with neural stem cells into rats with spinal cord injuries. The implant is designed to promote nerve growth. “The new work puts us even closer to the real thing,” said Jacob Koffler, the study’s co-author.
This news definitely gets my heart racing, I can’t deny that. It gives me hope that change is coming and that brilliant minds are making progress.
But — let’s be real — we’re not rats.
Yes, we’re learning from them and taking the necessary steps within this arduous process, but there is much more work to be done before this is available for humans.
So the questions then become:
- How do we expedite this process to see if this could work for us bipedal creatures?
- What can we do as stakeholders?
- How can we get involved?
- How can we use our minds, our voices, our stories?
- How do we put ourselves in positions to directly affect research and policy?
These are tough questions, but they’re the ones that are going to truly take this movement to the next level. Because if we take them seriously, it means we finally understand the power of our influence and participation. It took me awhile to figure out my path, and it keeps transforming, but I’m on it, and it feels good.
“The time to hesitate is through” (yeah, I’m quoting the immortal Jim Morrison here).
Who knows what comes next? The wheels are turning (excuse the pun, but seriously!); as a person with a spinal cord injury or a warrior within their sphere. We are the stakeholders. It’s time to start thinking about what we can bring to the table.
What are you good at? Where do your talents lie and how can you translate them into YOUR contribution toward finding a cure? Where do you see your potential first step toward becoming a stakeholder?
Whether you’re ready to leap, or just take baby steps, here are a few great opportunities for engagement that U2FP offers and beyond:
- Follow our Cure Advocacy Network updates in these newsletters and on social media (Facebook, Twitter, Instagram). That way you’ll know when we ask our community to call or email legislators. Raising your voice is vital — and simple. Then keep calling until we get it done.
- Organize the SCI Community around you — or look for SCI groups in your area and join them. Start a peer group to work for Cures. You could begin by a) reading Kate Willette’s book, Don’t Call It a Miracle, together. If your state has funding for SCI research, b) find out what they’re funding; check in with the researchers being funded and track their progress. Then c) reach out to U2FP and let us know what you find.
- No SCI research funding in your state? Work to change that. Then email U2FP so we can help you lead the charge.
- Check out how others with SCI are using their voice to make a difference. Jeremy Bigelow in Ohio is painting with his power chair. Laura Grace Beck (@anhonestquad) has an amazing youtube channel and is starting her own podcast soon. Or consider Gabriel Rodreick’s ongoing performance project, “A Cripple’s Dance” (@acripplesdance). Art is a powerful thing that can be used as a force for transformation.
It’s time to get creative. It’s time to be bold. It’s time to say YES when opportunities arise and not be afraid to ask questions!
Let’s connect. Let’s roll through the doors that open before us instead of turning away. Now is our chance to make change. I hope this serves as fuel for the fire within.
Burn, baby, burn.
Kelsey Peterson, Contributing Writer | Filmmaker
U2FP | The Cure Map