In Kelly’s Words – Visibility
Often people with spinal cord injuries share the sentiment that we are invisible in society. While we’re certainly noticeable (you know… with the chair and all…), people look away because they don’t want to be caught staring. Or people have such a challenging time returning to jobs, social networks, and recreation after an SCI that they stay home and withdraw from society.
In everything we do at the Kelly Brush Foundation, we want to celebrate the greatness that can come after something like a spinal cord injury. We want to make people and their stories, their challenges, and their victories visible. That visibility can take two forms: the inclusive kind where we share our stories with everyone, and the inherently exclusive kind, where we make ourselves available to each other to connect on the shared experience we all have that nobody without this injury can comprehend.
On the inclusive side, we send out a monthly email that lets our entire community (grant recipients, donors, supporters, sponsors, etc.) know what we’re up to, how our mission is in action, and how people can interact with us as an organization. We feature success stories, talk about the progress we’re making, and try to quantify our impact. But for many of us with a spinal cord injury, these emails can feel as though we’re being talked about, rather than talked to. Being talked about is important, but it’s not enough.
We are launching a new monthly email for those with SCI, that we’re calling the Active Project Newsletter. It will talk to and with people with an SCI. We will share information about upcoming adaptive sports events (whether ours or others), places to meet up with others, grant opportunities, and any other interesting updates about SCI generally (research being done, SCI stories in the news, etc.). We hope that it is another place where people can find community and connection with others who have a shared experience.
This effort is part of our broader Active Project initiative. We launched the Active Project in beta a little more than a year ago to facilitate conversations and information-sharing between people with SCI. And we’ve learned a lot about what people find interesting and helpful. We are rebuilding it and making an even better platform to help people with SCI learn about adaptive sports and connect with people and programs. We plan to launch later this fall with a big component of the product being a communication platform.
Inclusion in society is one of the most normalizing and humanizing things that can happen after someone has a spinal cord injury. We are working every day to break down barriers for those with SCI so they can participate in sports and recreation right alongside our able-bodied friends. We celebrate every time a mom or dad gets to ride around the neighborhood with their kids again, when friends get to ride out in the woods again together, or when someone can again feel the thrill of skiing.
But there is something so powerful about the shared experience of an SCI, there’s a deep understanding that is only shared by people who have been through the trauma of an SCI and survived physically and emotionally (or are working on it!). We speak a different language and have different emotional well to draw from. We want to create spaces that allow people with SCI to find each other and connect and learn through our shared experiences.
You’re probably reading this after receiving our KBF Monthly newsletter, our greatest inclusive communication method. If you’re able-bodied, thank you for letting us talk about our challenges and victories. Your support includes us in your conversation about active lifestyles, it helps us overcome our challenges, and it makes our victories sweeter! If you’re in a chair and reading this, let’s talk to each other. Let’s make this journey better for us and, maybe more importantly, for the next new member of our community. And if you’re able-bodied but want to join this conversation and see what we are learning about and sharing, we are happy to have you. Join us in this conversation!