Community is an Action

Episode 3: Community Is an Action

In this episode of REA-L Conversations, Marta Carlucci speaks with Heather and Tamara about rethinking what it means to build community for family members with intellectual and developmental disabilities. Rather than viewing community as a place where people seek acceptance, they describe it as an ongoing practice of reciprocity, relationships, and mutual contribution.

Heather shares how the transition to adulthood and the loss of school-based connections led her to create a society which is a person-centred network designed to strengthen relationships around her daughter. Rather than relying on formal services or a single solution, she hopes to weave together many small connections that create resilience over time.

Tamara reflects on shifting from searching for the "right" programs or opportunities to becoming an active community builder herself. She explores how families can intentionally participate in neighbourhood life, contributing alongside others so their family members naturally develop valued roles, relationships, and a stronger sense of belonging.

Together, they discuss why inclusion cannot be achieved simply by finding the right place or activity. Instead, lasting belonging grows through countless small exchanges; asking for help, offering support, sharing responsibility, and creating opportunities for reciprocity. They also acknowledge the courage and vulnerability this work requires, particularly as families navigate adulthood, changing social connections, and an increasingly disconnected world.

This conversation invites families to see community not as a destination, but as something we create together through intentional action, relationship, and shared responsibility.

Referenced during Podcast

Braiding Sweet Grass , Author, Robin Wall Kimmerer 

The Service Berry: An Economy of Gifts and Abundance

BC Initiative for Inclusive Post-secondary Education. https://www.bc-ipse.org/

REA-L Conversations is a family-led podcast about supporting our family members with intellectual or developmental disabilities to live regular, equitable, authentic lives rooted in community, not separate from it.

Through honest conversation and shared learning, families explore what it takes to hold high expectations and build lives woven into the everyday fabric of our neighbourhoods and cities. 

These conversations don't offer polished answers. They offer lived experience, and reminds us that inclusive lives are built with intention, small steps, strong relationships, and persistence.

Stay connected and join us in the conversation

Transcript

Marta 0:02

Welcome to Season two of Real Conversations. I'm Marta Carlucci. If you've been listening to our podcast for a while, you know real stands for regular, equitable, authentic lives. We're families who are intentionally supporting our family member with an intellectual or development of disability to live a life held to the same expectations with the same opportunities, and belief in their potential that we would have for anyone else. Regular means reciprocal relationships, valued roles, and being part of community life not set apart from it. Equitable means being treated fairly and with respect, with access to the same opportunities as anyone else without lowering expectations or accepting. Second best. And authentic is about having a say in your own life in whatever way you can express it. A life shaped by who the person truly is and valued for what they contribute alongside other citizens. This podcast is families talking honestly about the work it takes to move towards this kind of life. The intention, the thinking, the barriers, the relationships, and the small steps that add up over time. Because this work is so much harder in isolation, we need each other and other families with a similar vision learning from one another as we help to build the lives our family members deserve. Not perfect, not polished, just regular, equitable, authentic lives. Thanks so much for being here. Welcome to season two, episode three, titled Community is an Action. I'm gonna let Heather start us off

Heather 2:03

In Braiding Sweetgrass she talks about how the sweetgrass has to be given. It can't be bought. every time it's gifted, it gains power. And you don't know where it's going to go, and you don't know how it's going to be used, but just the exchange is what gives it power. And That's what community is right there. That's the whole definition of community. I really think we need to think really differently about what we think community is. We have this weird idea that it's a place-.. That you go and you knock on the door and you ask to be admitted. And if you behave properly and you can figure out how to be less yourself, that you will- belong there. Which is literally the opposite of belonging, but also not at all what community is. And it's just a critical misunderstanding, I think, of at least how I've experienced the community living movement.

Marta 3:09

It's like finding those safe spaces or asking for permission. That's why the ask is always so scary because we're giving the power over to the person and opening it up to them being able to say no. And that's not community.

Heather 3:23

No, 'cause community is an action. It's an exchange. And I'm learning through just being on the sidelines of the indigenous community, and just picking up these little moments where I'm like, Why have I never experienced that before?" And I have community. I feel like I'm pretty embedded in my community. But this is different There's an assumption of belonging

Marta 3:56

Thank you so much, Heather and Tamara, for joining us at our REAL Conversations podcast. The question I want to pose to both of you is: What was the catalyst that pushed both of you to make a change in the way that you are planning for your family member's future, and specifically their life in community?

Heather 4:20

Okay. I think we're at a transition moment, and we came through high school and had a relatively inclusive experience, but COVID got in the way, and all of our carefully laid plans and beautiful connections fell away. And here we are at the end of university, and I'm just so aware of how fragile all of these connections are. I was looking for ways to solidify some of those connections, and we've been really lucky to have some people through employment and school that have really kind of demonstrated that they wanna be part of- This, experience. But they're kind of on the outskirts, and it's hard to figure out how to have these direct conversations. And so I was thinking about how to bring people in, and I started exploring microboards. And that isn't exactly the right fit for us because autonomy is so important, and that doesn't seem to be really as autonomous as I would like for my person. So, I started thinking about how the job of the board might be to bring these people into the conversation. 'Cause what I've often found is that if I ask directly, people say yes to things, but they don't always know why. And I was thinking about how, especially these young people that are the same age as my young person have- The capacity and the, connections and they're the conduit to, like, I need them to pick up. I can't do this by myself. When your kid's in school, I, can invite people. We had kids over all the time. I was joining everything, right? Like, was on the COPACs. I had, people at my house every day for dinner. I had 30 kids here every New Year's. So that was easy. But now she's an adult, and it's weird for me to be that person, and I need her peers to pick up the ball and run with it. my plan is to, we've created a person-centered, society, and the plan around that is to invite these people in and help and, teach them, engage them in, thinking about what they can do and why it matters. And hopefully they'll get excited about that and wanna be part of it and see the power of it. I'm hoping that we were lucky, we had a lot of people to ask, and I'm hoping that even just a couple of them agree to be part of it, That good things might happen. That's where I've landed so far

Tamara 7:17

Well, my experience is practically the flip opposite of that. Well, first of all, she had a huge group of friends that she grew up with from infancy through the infant development program. Every Sunday, we would be out there and the kids would be in the gym playing around. And then they grew up and then, they joined, programs and community centers. And, she went 'cause that's where her friends were. I would have preferred something more inclusive, but I wasn't gonna say no. but her friends have, Once they hit high school, it seems like all the friends just disappeared for various different reasons. So anyways, the crux of the problem is that, after COVID, she was so happy doing her own thing, and she's so, confident in, running her own life. But she doesn't have any feedback, and now she can't take feedback from Brent because it seems like it's hypercritical. and she wants to be in control. and when you're powerless, being in control is very daunting. I mean, it is for all of us. But I think especially if you're powerless, you're afraid that some serious impactful control over your own life is at risk when you give it up So, I mean, we're quite a few years out from COVID now, and, we're just starting to build community and, All this time I've been thinking about, 'cause, you know, I've been in the fortunate position of hearing families' stories and supporting kids and their families in parallel how to find an inclusive life, how to build that. And, i've lost my faith that, there are magical ways of doing things that will, like you go through the list of employment. If you do this, this, and this, it'll all work out, and it does work. I mean, you see some fabulous examples of how it works and how it's sustainable and how it goes long-term. But that's not a model that seems to be relevant and working for us over the years I've had different, family members say things to me that I thought, well, I'm not that person. have all your kids' friends over. Have their parents over. Have, Tupperware party or whatever. Just build community and, it'll be great. Like, that's not me. But, the transition that I felt is that I have to change. I have to be that community builder. So that she can inherit a community that she feels she belongs to, and that her members feel she belongs. so now I'm thinking of instead of chasing those opportunities for inclusion or those opportunities for friendship, 'Cause simultaneous to all of this, what's happening globally, and especially in my neighborhood and in my co-op, is people are, feeling fragile. And I think fragile is the thing that pervades everything. Fragile and belonging are the two main concepts. And, they're building, public spaces of congregation so that people have places to go. You know, like libraries, but maybe squares, maybe, coffee shops that they go to every Friday night, they know who's gonna be there, and they can maybe play cards or something. And, that's happening everywhere. and also in co-ops and in other places, they're looking at ways to be self-sufficient, to rely on each other instead of having to rely on support services, or to rely on external sources or paid sources to meet their needs, which is a perfect meshing of what we're trying to create, and seeing it happening in community all around me. I have told some organizers, I'm not about to do community organizing because I don't have the bandwidth. I have to focus on building, with my person, her integration into community. So now I'm having these conversations with people who are building community about how I become that community member, and my people becoming those community members. So that's what I'm trying to explore now is looking at it from the other collective way of doing it. We're all building community for the same reasons, to reduce fragility and to increase our social connection and all of that. And if I can become embedded and the family becomes embedded, there's a chance that, it'll feel natural, and it'll have more resilience, and more sustainability

Heather 12:36

Yeah, I really have been watching and feeling that community is about these small exchanges, so there is no magic. There's no like, we're gonna do one thing, and it'll be like ta-da- an inclusive life has been accomplished, and we are safe forever. It's never gonna be that, right? it's not gonna be a story of here's a picture of you at your employment, and this is your whole life of inclusion. Like, it's just never That's not how it happens. That's not what community looks like. These small exchanges though of I ask you for help, you ask me for help, that's literally what community is. Like, I really am very inspired by how the indigenous communities, do community and view community, and because it, it's just so different. It's not a place that you show up and ask to belong, and so that wasn't working. I think that's the community living movement kind of like was doing this idea that you show up somewhere and you call it community, and look, here we've arrived, and that would somehow build this integration or, belonging and community, it doesn't work. And so I'm thinking about how we can make these small exchanges of, ask or information or connection, with people who've shown up and hope that some of them provide the opportunity for further exchanges. we've called the society Cedar and Thread. cedar refers to the roots and the culture and the connections and the capacity for growth. But the thread is all these connections and how vulnerable and fragile they are until you weave them together and so the idea here of this society is to bring these people in and try to weave something that gives us a little bit of strength and a little bit of resilience so that if a couple of strings break, if a couple of the threads fall away, we're not lost. That's what I'm hoping. And so the more people that I can bring in and build a trusting sort of relationship with, it doesn't have to be like a friendship even necessarily, but like we've asked people from all different sort of connections and spaces, who show up in their communities in interesting ways. and hoping that they'll help us to weave those threads together and see their one little piece could make all the difference. It doesn't have to be like a five-day-a-week connection, right? It could be just, "Hey, I noticed that really likes to go to, music bingo, and I go once in a while." Maybe there's a space or a place or connections. And it might even just be like, oh, these people all, a lot of these people are the same age or they're in spaces that my person. likes to be. And so if they're have their eyes and ears out, I think more becomes possible, especially if we're in conversation about what inclusion really is and why we've chosen to walk it this way

Marta 15:44

I think what I'm hearing from both of you, in your thinking and sort of what's led you to this, is it's not about the place, it's about the person first. And I think so often when we hear stories and we're told, "Okay, take this list and, make sure you've done this, this, this, and this," that it's usually about a space or a place or a type of job But it's not actually taking account the person first. Like, understanding what the person wants. You're understanding what fits for them, and you're building relationships so it's person-based, not place-based. And I think often when we hear stories about inclusion, they can often be about places. Does that make sense?

Heather 16:31

It does, and I think for me it's not even about, interests. Those are important, but I think the approach has always been if you like going to the movies then you need to hang out at the movie theater, or you need, that's where you need to work. And there's these sort of like we're always trying to fit people into spaces it's not even interest based for me, it's really relationship based. 'Cause some of the people don't necessarily have a, a shared interest. They have some sort of shared connection or shared experience, right? And so it's what they, sometimes it's what they don't have in common that makes it really interesting. Because I think that, that, sorry, this is just occurring to me, that my person having become an adult, I'm recognizing how other people know her differently and in different ways. And so I n- I want to know what they know. I wanna see what they see. I wanna help them- not limit their hopes to, these congregated programs and things. Those will always be available. There will always be opportunities to participate, and there should be opportunities to participate as an activist in the disability community or to, go to things where disabled people all show up together and feel empowered by that. but I want people to think about all the other places and possibilities, and if I can bring them together and help have those conversations and invite them in, I'm just hoping that it makes us stronger, makes more possible

Tamara 18:11

Yeah, for me it comes down to roles and responsibilities or relationships. And it's not about defining a role that person can do. It's about, allowing the opportunity for a role to develop. So it's about reciprocity, and through that reciprocity with other members in a common, way of interaction that a role, your identity, your confidence develops from being a member of that community. On a natural evolution of a relationship, and a natural evolution of a role. So it's kind of like not going in with the intention of building a specific relationship or a specific role, but intentionally going into a community or building a community or, contributing. I think it hinges on the value, the perceived value of the individual and what they offer to the community. my strategy is involving the entire family, or at least the two of us. We're starting with the two of us. and just having part of our identity, involved with that community. And then having that community identify us as members of that community, and then from there, a natural evolution of different roles. So it's more like- Becoming engaged or intentionally forming a community, and then looking for those opportunities of reciprocity, of contributing, being supported. 'Cause, you know, a lot of people, like you're saying you ask them and they say yes. people feel validated in some way by saying yes. And That's also an opportunity, and that's also part of the value, is having people to say yes. Or people finding, sources to say yes to, as well as being a source that responds to some way of giving.

Heather 20:15

Yeah, I actually think that there's some overlap here in the things that we're doing, and I just hadn't made this connection. so right now I feel like my person has access in several communities, has people, so does have a community. They aren't necessarily connected to each other. they're fragile, and when the university ends in April, a lot is really, super fragile and could fall away. And there's employment, but there's shifts happening there, and I just worry about when people take on different roles, whether those relationships are too fragile. And so this is really kind of how you're talking about how, you need to be part of the community. That's, actually is part of what this is for me, is, like, a way for me to stick my nose in, and be like, "Come with me." "And let me join." Because it feels weird and awkward, and it is weird and awkward to insert yourself into the relationships of young adults. But if I don't, it will not happen. Yeah. And so I'm trying to be really brave and get over the like, that's not the right thing, like, don't be weird sort of feeling, and inviting them into a conversation so that we have a space to talk about what I'm asking, and for me to, say, "Have you heard of SRV? Here's something that we've experienced. Here's something we know. Here's something we're trying." In a way, this may be a little bit more formal and gives them reasons to talk to each other. Because I'm not part of it. And if I'm not part of it, it will be gone

Marta 21:46

Like What I'm hearing, you both want this to be organic as far as creating those connections and relationships, but yet it also has to be very intentional. So, as parents, and I think what you're saying too, Heather, is like as parents it can be weird when you're trying to help them make connections, but you're trying to find ways where that's not so weird. And I think for Heather, you might be doing something a little bit more structured. And Tamara, you're kind of flipping even your own comfort and realizing that you need to put yourself in these spaces as well, along with your person, or maybe first and then your person, or whatever that looks like. But it's so interesting because it can't just be organic, and just what you said, Heather, and then expect it to happen, 'cause it's not gonna happen. Yeah, I think I kind of was stuck on the idea that if I found the right place and the right role, and people liked her, which they do, that that would be the thing. And it's actually just the thinnest thread.

Heather 22:55

Because all that's so vulnerable to- people coming and going and I think it really matters they get a chance to have these, like, conversations about what I think inclusion is and why we're doing it. Because otherwise people, even the people who've been super inclusive do default to this like, "Have you heard of PowerToBe or have you heard of Special O?" And of course, I don't live under a rock. I have heard of these things. and they will always be opportunities, but that's not stuff that we need help with, right? And only having those means there's a whole lot of stuff that she doesn't have access to. And so if I can have these conversations, I'm hoping that they go out in the world and do the work. And I feel like these young people have grown up in a culture of, if not full inclusion, integration. especially people who come from maybe more marginalized communities, they have a sense of what inclusion and belonging and justice look like in a different way. And if I can ask them to include my person in that, when they look around the world to just go "Oh, I didn't realize that I wasn't thinking about this as an opportunity." Like, I just want them to I'm hoping that some- that they'll pick it up and just start doing it, and that could be the, change in the world, right?

Tamara 24:27

I think it's also an opportunity to,, in that this is what the young people who are graduating are doing, is looking at ways to continue those relationships with the friends that they've had in university. And so it's just how to get involved in that. Not you, but how to get your people. Yeah,

Heather 24:44

and I need them, I need them to recognize that some of those very typical ways that people are staying in touch don't work for my person.

Tamara 24:54

Mm-hmm.

Heather 24:54

I do help post things on Instagram or like to make those connections. it would be great if just the people who really, care and have shown up in really great ways, recognize that they have to- Be more direct. It gets lost in translation, I guess. I need them to recognize that if they wanna make a plan, that they need to message me and let me help. That if she doesn't message back, it doesn't mean she didn't want to get your message or that if you get 10,000 memes and it's too much, please don't just block. Like, let's talk about how to maintain contact. Yeah There's lots of little pieces

Marta 25:38

Is there anything that for both of you, maybe you've shared it already, that have been really unexpected as you've been thinking, differently? Whether it's positive or negative? Like, what have you learned about yourself?

Heather 25:54

About myself?

Tamara 26:00

Then we need to up our game again.

Heather 26:03

It takes so much courage. It is so hard. Like, when we sent out invitations to come be part of this, like I have been feeling nauseous. Like, I'm lying awake at night. Even the people that I'm, like, pretty confident will say sure, It just takes so much courage to be... And, and I think, if it takes me this much courage, my person has to walk around in the world like this all the time. The extreme vulnerability of, putting yourself out there and having people reject you.

Tamara 26:40

Take control of your life. Yeah.

Heather 26:41

Or, yeah, c- take control or reject you or, like, make weird assumptions about you

Marta 26:48

Anything unexpected for you, Tamara?

Tamara 26:53

no, it's too early. It's too early in this process globally, the whole world is changing. Like, it's not just the economy and the politics that have a new world order. It's, communities and neighborhoods and how people socialize. And I was just listening to, CBC podcast- they were talking about how all of a sudden Gen Z has gone back to 2016 as the ideal time to have lived. And they're, listening to the same music and reconnecting with the same cultural things. And so they were trying to explain why this was happening. And, I found it interesting because, People were more connected personally back then, than they are now, because it was just when social media was coming in. So it just slightly predates that. and everything was more real. Like when they shared photos, they shared bad photos as well as good photos. They just shared whatever photo they had. So they're seeing their friends in really awkward moments not the perfect picture. Whereas now, with AI sorting their photos for them and posting, it's like there's a more artificial relationship that you're having with your friends than before, which was kind of interesting. I just brought that up because people are trying to return to a time when we were more connected in person, in real time. and that's in response, I think, to how fragile we all feel for all sorts of reasons. that was one thing, that, the more involved I get with this, the more I see this happening locally and globally. it was just what we started talking about at the beginning. So, my person is going around and she's buying certain products and the person that's, key in trying to organize a micro community here of mutual reliance and social connection has a coffee shop. So she's going there for coffee now and starting to have conversations with her neighbors there. So it's these little micro things that hopefully will come together as a larger community in the area. So it's neat to kind of see her... going through this process of expanding and occupying her space in a bigger world

29:25

Thanks for being part of Real Conversations. Keep holding high expectations, building relationships, and keep moving towards regular, equitable, authentic lives. And remember, this work is harder in isolation. Stay connected. We'll see you next time. Bye for now.