It has never been easier connecting with peers with similar disabilities than it is right now. Whether you live in a remote location or a bustling city, the rise of the internet and social media means you are only a few clicks away from sharing your story and learning from others. And there are just as many options if you’re not the internet type and prefer face-to-face interactions.
Nancy Berg didn’t know any other people with spinal cord injuries in her home state of Nebraska when she sustained an L3 SCI in 1995. She didn’t know where or how to connect with peers, so, like many of us do, she went on living to the best of her ability.
But by 2022, all Berg had to do to start building an active disability community was invite people to dinner at local food courts via social media. “I just posted on Instagram and our group keeps growing,” she says. The monthly dinners now draw 13-15 wheelchair users each month, with a total pool of around 30. “We’re probably going to have to find new places to meet, because it’s getting to be big.”
Seeing the diverse group of attendees coming together, and along with the benefits that result from peer connections, helped inspire Berg to launch the Nebraska chapter of United Spinal Association in the spring of 2023. Asked why peer connections are so critical, Berg shared a comment from Kailah Ronfeldt, one of the regular monthly diners: “To be surrounded by people whose situations are vastly different yet so similar to mine was a step toward an understanding and acceptance that I didn’t know I needed.”
“The whole thing is very surreal,” says Berg. “I can’t believe that I have built a community for users with SCI/D in my state, and it all started with a dinner.”
Member Tip:
Our chapter hosts a monthly dinner series, and it’s great to see people come and see others with spinal cord injuries and disorders that are thriving in our community, and leave with hope that they’ll be able to do the same.
— Nancy Berg, Nebraska
United Spinal Resource Center’s Most Frequently Asked Question
How do I find peer support and connect with other disabled people?
United Spinal offers multiple avenues for anyone in the disability community to find meaningful peer support in ways that work for their lives. Through our extensive Chapter Network, Peer Mentoring Program and Peer Support Group network, you can easily find ways to learn from peers or share your valuable lived experience. A robust network of 45 chapters serves as the backbone for United Spinal’s peer offerings, with each offering unique programs and opportunities to connect. We also have many support groups still meeting in person (see “Best of the Web Resources” below).
United Spinal’s Peer Mentoring Program has united thousands of individuals from coast to coast by creating opportunities for mentors and mentees to be connected despite geographical differences. This is a great way to connect with someone who can offer you advice, guidance, resources and real-life experience. It’s always nice to speak with someone who truly understands! Connection is key, and being part of a larger community that can relate and understand is so important. To request a virtual mentor, visit: unitedspinal.org/peer-mentoring/request-mentor.
In collaboration with our chapters, our virtual peer-support offerings continue to grow and include a wide variety of groups including Rolling With PRIDE, Empowering Parental Caregivers, United Spinal Social Hours, Active Project Live, Resource Center Live, Gun Violence Survivors With SCI, Family Caregiver Support Group, Sin Limites and many more. You can find the entire virtual events calendar here: unitedspinal.org/events-usa.
Lastly, we have a very active community on Facebook. Many members share experiences, resources and information with one another there. Come join us at facebook.com/groups/511472059482754.
— Lindsey Elliott, United Spinal’s Senior Director of Community and Peer Support
Resources
Best New Mobility Articles
The Power of Peer Support: Richard Holicky chats with other wheelchair users about their experiences with a variety of peer support options and investigates why peer support is invaluable.
Starting a Support Group: Paula M. Larson’s article begins with three wheelchair users who started support groups when they couldn’t find local peer groups but goes deeper into what makes groups work and why they are critical.
Best Of The Web Resources
United Spinal’s Chapter and affiliated Peer Support Group networks.
Facebook Groups
Two of the largest, most active groups are Spinal Cord Peer Support Worldwide and Spinal Cord Injury USA Group.
Videos
More Than Walking: Regular online video peer meetings along with an extensive archive of videos covering support, mentoring and much more.
FacingDisability.com: High-quality video interviews with SCI professionals and survivors candidly answering commonly asked questions and sharing their life stories.
It’s easier to go through hard times when you’ve got people to talk to who can relate.
— Lavoris McGhee, Arkansas
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CareCure.net has been around as a discuss/bulletin board (moderated by SCI nurses) since 1997. We need new members as so many of our original members have passed away or left for other reasons.