Navigating Hope and Fear: Conversations on Inclusion

In our latest conversation, we explore the delicate balance between hope and fear that shapes our journeys as families. From navigating inclusive education to envisioning inclusive futures, we discovered the transformative power of leading with hope—active hope that fuels progress, creativity, and resilience. By holding clear visions and embracing honest dialogue, we remind each other that every small step forward builds a foundation for bigger possibilities. Let's keep redefining what’s possible, together.

Listen in and join the conversation.

Chapters

• 2:36 Hope and Fears is Where We Live
• 5:39 Building a Foundation of Belonging
• 10:48 Having a Vision of an Inclusive Life
• 17:22 How do we Support and Maintain Hope?

Transcript

0:00

Hi, I'm Marta Carlucci, and this is real. Inclusion isn't easy or well understood. That's why on this show, we invite families and allies who are intentionally exploring how to create regular, equitable, and authentic lives in their cities and neighborhoods. We want to strip down the barriers and unhinge the myths about the contributions our family members make to your community. Through storytelling and reflection, we encourage families to be the change that is needed to ensure their family member with an intellectual or developmental disability is a fully included, valued, and contributing member of society. Are there success stories we can learn from? Come, be brave with us and explore the endless possibilities. Welcome to episode four of Real Conversations. This week, we're going to talk about hope. But we do spend a lot of time talking about fear. Sometimes you have to have those realizations about how fear can get in the way of having active hope. So you hear us talking a lot about that. You'll also hear us talking a lot about the vision and supporting this inclusive vision for our family members really gives us hope. It helps us and our family members have hope for their futures. But before we get started, I want to clarify a few things. When we use the term inclusion, we want to be clear that we're describing a life where everyone is valued, including our family members with intellectual or developmental disabilities. In our vision, our family members are immersed in their communities together with friends, neighbors, co workers, family members, and community members. In their own neighborhoods and cities. We envision and strive for the same life path and opportunities that most Canadians have access to. This is the vision of lifelong inclusion our family members are striving for and one we believe has the best chance for our family members to experience the good things of life. A life that most of us take for granted. Let's get started, shall we?

Heather: 2:34

Hope and fears, that's where we live, right? Back and forth between the two.

Marta: 2:39

Exactly. That's why I think the topic is so important.

Heather: 2:42

I'm actually feeling like I've got friends struggling with fear in different capacities, not necessarily around disability. I'm feeling a little bit like there's almost a strategy to keeping us in fear because all of our energy gets used to live in this, I'm in a hole, how will I ever climb out of it? the what if, the what if. so much of our energy gets sucked into that, it keeps us from doing really brave, creative, collaborative things. I really want to work hard on that and work with people who want to remind each other to take that message and flip it. Because if you use that energy to be like, okay, you can acknowledge it. That's just something I'm afraid of, but like the what if, and so those are very different conversations and putting all of our energy into fear really keeps us from, I think it's really held the whole community living movement hostage, and a lot of the things that have been built have been built to, address fear. Finding places and spaces to open up the hope is actually hard, but it's so exciting.. We were talking sort of the seesaw of hope and fear. I have a core memory of being on a seesaw with my sister. And we were different, sized humans. She's, older than me. She fell off the seesaw. I went flying up. I remember flying up. Then I came down and whacked her in the head and there was blood everywhere. I feel like I've been whacked in the head the head a lot of times, but I'm really trying to hold on to the reminder that the flying is kind of fun. And if you can just not think about the possibility that you'll come down, like, just keep going, keep going. Willpower is associated with the glucose in your body. It's a physical thing, and it's finite, and so you only have so much willpower to give. And so you've used up all your energy. And you know, those days we've all had them where we've been so stressed out from whatever it is, or we have been gaslighted ourselves. there is no room for willpower in those moments. But, if you can nourish yourself for that next opportunity. I have a great example of that happened today. we had a really rough morning with, something my person was supposed to do but the support dropped the ball, I was so mad. I'm so tired of having the same conversations we have to come up with a better solution than we're just not going to do stuff. I was so mad. I was shaking. So I phoned someone who, has a really great mind for these things. And by the end of it, I'm all hopeful and excited again and rejuvenated. I got this little glucose intake just by talking to somebody who's Not just affirming that it's okay for me to be mad, but was like, let's have a hopeful conversation. So that's why coming and having these conversations with you guys is rejuvenating because I'm not living in a fear scape. All it takes is one person to go, yeah. And what if something awesome can happen from that? And everything shifted.

Mandy: 5:50

I try to follow this motto that, came out of The U. S. chapter of Prader Willi Syndrome. And it's this motto of, Hard now, easy later. And we often sit in our fear of not wanting to do it. Put the work in, because you don't know the outcome, so you'd just rather do nothing. the work we're doing, is a little bit hard now, but it's gonna be so much easier later, even with this highlight of my kiddo starting, high school. I've been laying the foundation. it didn't go the way I wanted elementary school to go. high school is far exceeding what I had imagined it could be, because I laid that foundation of belonging, if I hadn't had the experience of elementary school and my kiddo's experience of elementary school. It wouldn't have set me up and him up for the success that he's now having. If that makes sense.

Marta: 7:12

Tell us more about that, Mandy.

Mandy: 7:15

So I think, because I was in that mindset of like, We have to come from a place of belonging, or there is no learning. If you don't feel like you belong in that space, and those places, there's too many other stuff that's going on for you as a person to be able to learn. So now that he's in high school, he feels like he belongs because nobody has any preconceived ideas. I was intentional in the documentation that I was giving the teachers when they asked us to fill out the all about me forms I Changed the wording and framed it the way I wanted it to be framed so that they are seeing the right message. There was no section on that form to put his vision, but I made a section and embedded his vision so they know what he's working towards from grade 8 to grade 12. if I hadn't done the work in these last eight years to learn what his vision was I don't think we would be as successful as we are right now, and in a place where he feels confident to join the clubs and participating in all of these things that, are just so wonderful.

Marta: 8:50

It sounds like you've put him in the position of having hope as soon as he entered that high school. there will be moments in the future that fear will come up, but because there's success, So early, he'll have that to look back on, he knows it's possible already, and you as a parent know it's possible because you're hearing that from him and knowing that things are working. And, of course, you know, things aren't going to always be perfect, but it's just so much better place to start, then in this place where there's fear is so hard to get out of that.

Heather: 9:25

The community has seen it. they're like, this is what's possible. And so they don't live in the fear, which is all they were given in the beginning.

Mandy: 9:36

And I didn't allow us to fall back on the regular fallbacks that we all try to do. Like the, the team at school often is like, oh, let's not try that quite yet. We'll give that some time before we try that. I was like, no, I think we just try it.

Heather: 9:57

We don't need to do learn to have a friend programs. We don't need to learn to go to school. We don't need to learn to have a job. We don't do learn life skills and laundry before we move out. other people don't do that.

Mandy: 10:09

And I've been very intentional with, any communication they send me around what an activity is going to look like. I'm always intentional about saying, He'll sit with his classmates, he'll do that with his classmates, he'll ask his classmates, to keep reminding them that is the first line of communication for him. You ask your classmates or you ask your teacher, those are your go to people.

Heather: 10:46

That's really good.

Marta: 10:47

Yeah, I love that. Mandy, for the audience who are listening, when you were talking about, the form you had to fill out and how you added vision, can you clarify, what is in that vision that's so important for the school to know? for me, it's creating that narrative that's the same vision for every person, we often get into this trap of thinking that our loved ones will do something other than that, and I've created it in a way that it's simple for them to grasp. Like, I try not to use, all those words that we often use when describing disabilities. I use just plain language, just like I would for myself or my other child or my husband. Like, what we want out of life, thanks for sharing that, Mandy. Go ahead, Sandy.

Sandy: 11:48

I wish I'd had this group when we were going through school I went in there with, seven league boots and told them they were going to do this there was a lot of resistance. if I'd had a vision, if I'd had you as my mentors, it would have been great.

Mandy: 12:10

I agree. I don't think I would have this vision if it wasn't for all of you.

Heather: 12:17

Oh, I wouldn't have this vision if it wasn't for Sandy because she gave it to me.

Marta: 12:22

Because you observed it. You saw it.

Heather: 12:25

we are literally building our hope because of what Sandy built. I wish that you had also had a group, Sandy, but I think it's important that you know, you built something here that we're building on. You're the foundation of it,

Sandy: 12:40

well, you're very kind to say it. But I didn't articulate our vision until grade 10, and it was she who actually did it then, she had a path and held it up for her teachers and told them what to do. Which was far more, powerful than what I could have done.

Marta: 13:05

Heather, because you were the one who was observing this and was so affected by, Sandy, and her daughter's life, specifically. Give us an idea of what did that look like, you know, what were you seeing, Heather, in those early years? Right from the very get go, when my daughter was brand new and we were trying to figure out how to belong to these spaces and places that were so uncomfortable because they were not part of any vision that I wanted, didn't seem like there was an option. I was just. Walking through life deeply uncomfortable with the possibilities and trying to find something that felt right. I remember early on being at an event Sandy and her daughter being there handing my baby over to my friend who was probably, 14 or 15 then. And just the conversation right there started the way that, Sandy introduced her daughter. the whole conversation right from the get go was not about. All of the, the only possibilities, there was just different hope, and there was different possibility. And then it really hit home when, my kid was only four or five when Sandy started talking to me about inclusive post secondary and the reality of, her daughter getting to go to university the whole, mind blowing truth about how university is about. Education and that everybody should have access to that universities were never meant to keep people out That's what's right, even somebody who doesn't read or count past 5 or walk or all of the whatever's. Even the most complex person belongs there just because you belong everywhere, that should not be a mind blowing thing that people intrinsically belong. And especially when you're talking about somewhere like a university that has become such an elitist exclusionary place, when you blow that wide open, it's just so amazing. so being able to, before we even got to school. I'm interviewing this poor principal and being like, are you going to support my kid going to university at age five, right? And him going, okay, what are you talking about? It changed everything because everybody else was offered hope. the allies we found were excited because they felt like they were part of something. We were building something together. We were hopeful together. We weren't just mad at each other. We weren't just. Tearing we were that what Sandy did for us.

Sandy: 15:57

Thank you, Heather.

Marta: 15:59

Thank you so much for, for giving us that visual. I love that. Baby in arms.

Heather: 16:06

And I remember somebody saying, I was afraid about that. Sandy wasn't afraid about that. And because Sandy wasn't afraid, I wasn't afraid.

Sandy: 16:14

I'm looking at her from the perspective of her being 41 now and thinking, I am so glad I chose that route she has blossomed, she's reached her potential, she's got a job, she's married, she's living semi independently, she's done so much in her life so far I'm very proud of her because she weathered a lot considering they weren't prepared to include her to begin with.

Heather: 16:56

I love When I think about your daughter, one of the things that I hope for my own kids, all of them, is that she is more than happy. She is not always happy. And I think that's great because she's more than happy. She has hopes and frustrations and fears and all of the things and is allowed to have them. And that's important.

Marta: 17:21

It makes me think about, As parents and family members if you could think back when your family member was young and you were young, what was it about and this goes to all of you we'll all have different answers because we're all at different stages but what do you think, it was or is. That families are doing to instill hope in their family members so that their family members in turn, can carry that on as they become adults and think about their passions and know that life isn't just A bed of roses life and being happy is just one part of life. And that's the brilliance of living an inclusive life and having the same experiences as everybody else because we are human beings and we are complicated and there's lots of layers and and all those things. So I'm just wondering if any of you can pinpoint, what that might have been. Go ahead, Mandy.

Mandy: 18:23

So, for me, it was, hearing from you, Marta, about, and I don't think you intentionally guided me or said anything specific, but it was just, I was having conversations with my kiddo early about Getting a job, what do you want to do, having your own apartment, what are some of the things that you really want, which is a dog or many dogs, and you can't have them at home. So what do you need to do to be able to get to that goal of having pets, you need to have your own apartment. And that requires Getting a job, you have to have a job to be able to pay for pet food and all of that And I remember we had been talking about it for, a couple of years, and I thought he had it all sorted in his head how this was gonna work, and one day I said, How are you gonna pay for rent? And he looked at me straight out and said, Well, you'll pay for it. And I was like, I didn't sign up for that. I'm like, you're gonna be like any. young 20 year old that gets their first apartment and it's going to be a crappy apartment with crappy furniture and all of those things or maybe you'll get a few hand me downs from us but, you'll need to get a job and pay those things. He's like, oh. for a hot minute he was like, well that changes things. But then the wheels started turning. And he was like, Oh, right. Yes, this is part of the planning of it. a couple months later, he said to me, Hey mommy, when did you buy your first? Home or your first apartment and I was like, oh, I didn't buy it till I was in my late 20s And he was like, well, I'm already saving for mine. I think it's really important to have those conversations. Otherwise, if you're not having those conversations, your kids can't imagine what it would be like when they don't live with you.

Marta: 20:50

I think you're starting with hope and high expectations. You're starting from a place where most parents would start for any child. And he already knows now what his pathway is. Even though it could change, nothing static in life. And some of his dreams and hopes could change as well. But you've created the inclusive pathway. You've basically given him that vision and helped him work through what he imagines it could be. And you're helping him see how. it could become a reality. And we know it's going to be different for everybody. How you are defining the vision is giving him hope The hope is not just a thing. It's not I hope today's going to be a sunny day, or I hope he's going to one day live on his own. You're having active hope. And I just think that's so cool.

Mandy: 22:00

The important thing is that he's taking the time. To process the information and think it through, he doesn't necessarily fully understand, what it means to live by himself and those kinds of things. But he is thinking about it and sorting out some of that stuff. in his mind, for him, it takes a bit longer, So you have to start sooner,

Heather: 22:32

I think it's really cool that he's, has that, has that path, has that thinking, has that, mindset. And, those big dreams. My kid can't articulate those things. it's quite different. for us, it's a lot of holding space for those. And we have to hold visions, in a different way. And along the way, we find ways to offer that supported decision making. Around, the more immediate decisions, but I think it's important, in this podcast to, make it clear that we're talking about all the different kinds of ways that we do that, because it doesn't look the same for all families it looks quite different for a kid who, doesn't seem to have any willpower or motivation to do things beyond the immediate, but that doesn't mean that you don't hold the space and hold the hope and hold the vision. And it doesn't mean the vision never changes. In fact, really requires us to be almost,, militant in how we hold that vision because the options provided to us are so. sad and limiting that we have to, really live in hope because the option is just depression.

Marta: 23:53

Yeah. And just to clarify, Heather, when you're saying, the vision, you're referring to the big North star overriding vision of living an inclusive life.

Heather: 24:02

Yeah. living whatever life it is that you choose. for us, we were really holding onto that inclusive life, not everybody is going to define that the same way as we do, but holding onto that vision and making sure you believe that you're allowed to have one and that your person's allowed to have one. I think so many families right from the time their kids are little, get told we're giving you a vision and this is what you get, Welcome to this new place learn to live in it. And learn to be happy and grateful for it. I think that there's more possibility. I think that there's more hope to be had. I know there is. Because we've done it. And it isn't easy. And it isn't perfect. And some days you're just mad. And some days you're tired. But then there's these moments that make it so clear that your kid's having moments that other people aren't having. Give us an example. there have been some really good ones lately. like some things around safety, my kid is working their third summer a seasonal job. the first couple of years, like there's lots of really good stuff about it. It's amazing team. but this year it's kind of solidified where people are looking out for her and they're noticing when she's not there. They've remembered, they've realized that she needs to be there and that if she's not there, not complete as a team. And so there's just this level of safety in her life that wasn't there before. they notice when she's not there. when she's not well none of these people are paid to be in her life. they make sure she gets invited to stuff. They make, make sure that she has a ride to the social things. They were all going out for a drink after work and had a plan about where they were gonna go and how they were gonna get there. then they realized she didn't have a ride. So they all, they just changed the location to make it possible for her to go because they see her. she wouldn't have that if she was in a segregated program, she would have nine to two. Or nine to four, and that would be her whole life. And she might have friendships and relationships and people who care about her. These people just want her there because they like her. Because she's one of them, not because she was assigned to this space. there have been a few examples of that this year where it started to solidify. And it's given me a lot of hope that we're onto something. there have been times where I've wondered whether I have made the right choice along the way, whether I've, with this vision kept her from having something like everybody's like, you know, my kids and day program, have all these friends, they go to special O, they do all these things. And you start to think maybe that is what people will say to me, don't you think she's isolated because you aren't choosing those things and I'm starting to now be able to articulate and see. She's not isolated because of that. In fact, she has these people in her life who are not going to walk away, if she gets, transferred to another program. it's just more real. And they'll come and go out of her life too. But, I just feel like they're not friends. Just because they're assigned to be in proximity to each other,

Marta: 27:08

they notice when she's not there in a way that happens for all of us when we feel belonging. in situations where you are grouped together and separate from the rest of community, you may be missed, but that's from people who are paid to notice You might have real friends, Because people do, have real friends and real relationships, I don't want to say that they don't, but these people don't have to invite her. she doesn't go swim with her because they're all in the same program. Yeah, like they invited her because they like her, and that makes me think cool things are possible. And then she got to reciprocate, This was really fun. This happened the other day. She had won last year, four tickets on a romantic sunset whale watching tour at the staff party and we were like, what the heck are we going to do? We have to do something awesome with this. it took us a whole year to figure it out. But there's these four women that she works with that are also university students and she invited them. Come with me. And they, All went and she brought a big charcuterie spread they had never been and it was magical they saw four pods of whales it was like the tourism BC video they were all spending time with her they were so excited and she got To do that for them, she made that happen. And so they have followed up, with what else she got in that backpack, right? Because it helped them to see her in a different way. And so I'm hopeful that some of those relationships, three of you live together. Maybe there's a possibility for a sleepover. And that might help her to think about what living on her own could look like, because she doesn't have that if I say, let's go look at apartments, she's like, you can move into an apartment. I'm staying with dad. She's got no, like, I want to change things, energy going on. There's lots of examples, I guess, Great example. and the fact that this is an experience that they'll all have together forever, sharing experiences is very powerful to create connection amongst people. That is wonderful. Heather, I just wanted to go back to what you were saying around, the motivation piece and how it's a little bit different for your family, when you're thinking about, your daughter's vision and the things that, that she wants to do and supporting that, can you give an example you know, a lot of why we exist is we want to ensure that, that we're opening the doors to our family members vision and what that, you know, vision is, where we don't want to be the one saying, but think we know better, we know we don't know better. how are you doing that, just for other families who might be listening, who are in a similar position?

Heather: 29:55

Yeah, we've had to really pay attention to the things that light her up. She doesn't like, if you're like, do you want to go to work? She's like, no, thank you. I'm good. literally the phrase And I kind of love it because it's very 23. we have to just pay attention to the things that light her up and like realizing that. She likes to work in a team. She likes to feel like she's part of a team. And so a workplace for her or, places where she's successfully engaging are places where she's not on her own, but she's part of a team within a team. So she really has, something that she's supposed to do, but is there with other people who are doing it coaching each other and feeling that vibe. it's just recognizing the things that light her up and the things that don't. And she might not never have that, like, I'm motivated to do this for a whole year. if you ask her, do you want to do this job next year? She's going to say, Oh no, thank you. But we know that when she gets there, she is like really most of the time enjoys that the way the rest of us are interested in or enjoying their workplace. So it's just, looking hard and listening hard and continually noticing when it changes. it's holding that for her because she doesn't seem to have that intrinsic farther than tomorrow motivation or vision, but she does have things that clearly make her feel a sense of belonging. And that's what we look for.

Marta: 31:17

That's a wrap, folks. Thanks so much for joining us. And for all our contributors, Mandy, Sandy, Heather. I love hearing your stories. If you liked what you heard, and you're looking forward to hearing more, please follow us and subscribe. You'll find us on Spotify, Apple Podcast, or Google Podcast. Drop us a line. Let us know what you think. We'd love to hear from you. Thanks for joining us and being brave. Thanks, you guys. I needed this today. Oh, that was so great. Thanks, you guys. so much, everybody. That was awesome. Talk to you soon. Bye.