Building Collective Strength Through Disability Communities

David Carlisle

Right, so today we’re diving into something pretty close to both our hearts—how real, lasting disability communities get built. And I don’t mean the kind you see on a brochure, with the staged photos and the mandatory hashtag. I mean stuff like peer-led online forums, WhatsApp groups that never sleep, and those Saturday mornings in draughty church halls—sometimes where the tea’s questionable, but the company’s gold.

Claudia Reese

I love that you mention the church halls, David, because I swear every grassroots movement has run at least one meeting with questionable folding chairs! It also reminds me of Disabled People’s Organizations, like Scope in the UK—which, honestly, does an amazing job helping people feel like they actually belong. There’s a difference between a service and a community, and groups like Scope close that gap. We’ve talked a bit in previous episodes about how connection can be life-changing, and this is where it starts.

David Carlisle

Absolutely! But here’s the thing—getting these support spaces off the ground isn’t just about a Facebook invite. The key is accessibility from day one. I always say, if your meeting is up three flights of stairs, you’re not doing it right. Prioritizing accessibility means, like, step-free venues, clear directions, captioning if you’re online, flexible timing. And—oh, the big one—clear communication. My first couple of tries? Lots of jargon. And codes of respect help keep things safe for everyone, or, well, mostly safe, other than someone always bringing gluten-free snacks nobody eats.

Claudia Reese

Oh, don’t knock the gluten-free snacks, David. You never know who’s actually thrilled they’re there! But you’re right. When I set up a parent resource group at my kids’ school, those early hurdles are so real. I remember our first meeting—half the families couldn’t get into the building because, I kid you not, nobody thought about the elevator key. We learned fast: it’s not just about showing up, but who can show up, and making sure everyone, including people who might not know the “lingo,” feels they’re not out of place. That ‘jargon gap’ between parents, teachers, specialists… I still have PTSD from my first IEP meeting.

David Carlisle

Oh, don’t get me started on jargon! "Neurodiversity" is still my tongue-twister. If I can mangle it, anyone can. But, those awkward beginnings turn into trust over time, yeah? And pretty soon, the group has its own inside jokes, messages flying at odd hours, and an unspoken agreement that no question is too small or too weird. That’s community.

Claudia Reese

So now that we’ve got our community started, how do we actually build power together? I think of how, in disability spaces, sharing information is practically a superpower. Some of these groups pull together spreadsheet after spreadsheet of legal rights, medical contacts, social programs—I’ll confess, Google Sheets has never felt so… radical.

David Carlisle

Yeah, it’s like crowd-sourced survival. There’s a project I love—the Disability Visibility Project—where folks pool not just resources, but voices. And that kind of thing gives collective strength. I mean, you post a question, and the answer comes with six bonus tips, three links, and probably an offer for a virtual coffee! That’s how gaps close—when people share what they know, instead of keeping it locked up like it’s secret family biscuit recipe.

Claudia Reese

Mutual aid’s not new, but the tactics get more creative every year. I’ve seen WhatsApp groups balloon into international hubs for adaptive tech—Eric told us once, after moderating an online panel, that a simple chat turned into a resource hub with dozens of folks swapping knowledge on everything from screen readers to funding hacks. And it’s not just tech—virtual Q&As, plain-language newsletters, even podcasts (hey, like this one!) are all ways people make sure no one’s left scrambling alone.

David Carlisle

Also, it’s got to be accessible—there’s no point sharing a guide if it’s in a PDF half the group can’t open or in words people need a translator for, right? If anyone out there remembers our episode on inclusive classrooms, it’s a bit like differentiating learning—meeting people where they’re at. It doesn’t have to be complicated to be useful. Sometimes it’s literally just, “Here’s a number to call, and here’s what to say.”

Claudia Reese

And those simple swaps—so much power there. You start to realize, when the info flows, barriers shrink. And suddenly, you’re not alone in your advocacy anymore.

David Carlisle

Now, here’s the bit that gets tricky—building momentum after those big wins. Anyone can rally for a campaign or protest, but how do we keep the lights on, so to speak, once the signs come down?

Claudia Reese

Right, the “what now?” moment. One thing I've seen work is regular check-ins—virtual coffees, group messages, monthly debriefs. They aren’t just social—they keep people plugged in. Mentorship is huge too. And sharing advocacy wins, big or tiny, keeps folks hopeful.

David Carlisle

Stories matter so much for that. Like the #WeShallNotBeRemoved campaign in the UK, where disabled creatives started sharing their experiences. Not only did that boost trust, it made others feel strong enough to share their own—and suddenly you’ve got a movement, not just a mailing list. I guess, to be, um, poetic for a second: stories are like yeast in my sourdough. Too much and—OK, bad metaphor, but you get it—they help everything rise together.

Claudia Reese

I love that. Stories also build resilience. Honestly, I remember a parent joining our advocacy group—she was terrified to speak up. The first time she did, it was during a heated debate on playground accessibility. She just told her story. That was it. Suddenly, everyone on that committee looked at the issue differently. By the next year, she was running mentorship circles to help newer members find their advocacy voice too. It’s a ripple effect, and now we’re seeing leadership develop organically, not just from the same old faces.

David Carlisle

Yeah, and those circles—we’ve got the same thing in my unity club at school. Kids share a win and the next thing you know, someone’s teaching others how to write a letter to the council or organize a fundraiser. That’s the sustainable bit: building trust, then giving it away, so others pick it up.

Claudia Reese

Exactly! And if you really want to shake things up, you build alliances outside your usual circles. Think allied organizations, policymakers, even groups you wouldn’t expect. The broader the net, the louder the voice. We learned that organizing a city-wide event—bringing in folks from transport, parks, youth services. Everyone had a role, and suddenly systemic barriers didn’t seem so untouchable.

David Carlisle

I mean, advocacy doesn’t stop at the school fence or, y’know, the WhatsApp group, right? When communities team up for joint campaigns, that’s when headlines happen. Remember in one of our earlier episodes when we talked about how policy shifts often take years of collective effort? That’s this in action. Pooling resources, going for a grant together, or running collaborative workshops—I’ve seen it work wonders for local adaptive sports and education programs. Makes you realize, “Oh, it’s not just us banging our heads against the wall.”

Claudia Reese

It does take some wrangling, though! You get more voices, but you also get more opinions, so compromise is key. But strategic partnerships—when they work—they open up new training opportunities, funding sources, even space for research that wouldn’t happen otherwise. The impact sometimes goes way beyond what you’d imagined as a scrappy little network starting out.

David Carlisle

Yeah, sometimes we don’t see that in the early days—a local support group in someone’s lounge can turn into a citywide project with funding, media attention, maybe even councils on board. That’s something to aim for, not just dream about.

Claudia Reese

Now, before anyone gets too comfortable, impact needs measuring. Otherwise, we’re just crossing our fingers. For every project, surveys and feedback sessions are crucial—for seeing what’s working and spotting blind spots we all have.

David Carlisle

Oh, and don’t forget—getting feedback doesn’t mean fishing for compliments. Sometimes, you hear things like “the lighting was terrible” or “I didn’t understand the handouts!” That’s gold for improvement, as much as it bruises the ego! And long-term? It’s all about sustainability. Funding sources can’t just come from one annual bake sale. It’s gotta be grants, donations, community fundraising—the works, if you want programs to last beyond one brilliant campaign.

Claudia Reese

Yeah, and if you want to avoid classic burnout, building up leadership is critical. That means actual pathways—offering training, explicitly mentoring new people, and honest succession planning. Otherwise, it all falls apart when one key person moves on. I know the word “succession” sounds dramatic, but it’s really just “who’s got next, and how do we get them ready?”

David Carlisle

I always love when a shy parent or a kid who hangs back at first, suddenly steps up to lead a club or an event. That sense of continuity—it makes all the difference and helps a network survive, not just one-off wins.

Claudia Reese

So, let’s end with a bit of future-gazing. Innovation is key. And it’s not just “tech for tech’s sake”—it’s about finding tools that genuinely increase participation. We touched on this in our last episode on tech in the workplace, but honestly, things like AI or virtual reality—if used right—can massively boost accessibility for meetings, events, even advocacy work. Suddenly, more people can join, wherever they are.

David Carlisle

Yeah, and creativity matters just as much. Some of the most dynamic advocacy I’ve seen lately comes from pilot projects that mix art, culture, and tech. It’s like—put advocacy on stage, or into a mural, or use digital storytelling to capture experiences that stats miss. That’s how you reach new audiences, or engage community members who might not speak up in a meeting, but will tell a story through photos or theatre.

Claudia Reese

And if you want real longevity for a community? Get the next generation involved. Teaming with schools or colleges to develop internships and training programs gives youth with disabilities a seat at the table and a toolkit for leadership. Those partnerships mean the community’s not just surviving, but actually thriving and growing—long after we’ve handed the reins over.

David Carlisle

Couldn’t agree more. The best part is, all these innovations—whether it’s AI-assisted live captions or choreographing a dance for a rights campaign—they actually bring out skills and talents people didn’t even realize they had. That’s what going “beyond the label” really means, hey?

Claudia Reese

Absolutely. And that’s a perfect note to wrap up on for today. Thanks, David—for your tangents and, yes, your sourdough metaphors. And thanks to everyone listening for being part of this growing, ever-evolving journey with us.

David Carlisle

Thanks, Claudia—always a joy, even if I never quite get “neurodiversity” out in one go. And thanks, everyone, for tuning in to “Beyond the Label.” We’ll be back soon with more stories, strategies, and questions—hopefully with fewer tongue-twisters next time. Take care!

Claudia Reese

Bye, David! Bye everyone!