Part 2 Embracing Hope: Holding the Line on Inclusion

A podcast of passion and empowerment!

REA-L Conversations: Holding the Line on Inclusion 🎙️ 

What gets in the way of hope? What makes it so hard to stay on the path of inclusion? REA-L Conversations is a frank, unfiltered, and sometimes cheeky podcast where families and allies dive into the tough, messy, and deeply personal realities of ensuring people with intellectual disabilities live fully included lives. 

From navigating funding pressures to challenging low expectations and ableism, we speak openly about what it takes to stay committed to a vision of belonging, even when the world keeps pushing back. Join us as we challenge the status quo, share hard-won lessons, and create space for conversations that hold true to what matters most. 

Because inclusion isn’t just a nice idea; it’s a life worth fighting for. 

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. 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?

Marta: 2:09

What do you think gets in the way of having hope

Heather: 2:12

for me, I don't have enough people that I trust to stay in this conversation with me. And that drives my fear, because I don't feel like I have people I can trust to help me hold that or to stay in that conversation without deviating to the fallback positions. I'm really feeling that a lot because we've made the decision not to, outside of steps forward as we're moving forward, we're not going to take CLBC money, I really want to build something first and then ask them to sustain it because I have felt so much that there's such a pull. As soon as you take that, the whole conversation shifts and all of my energy goes into this funding conversation. And people are like, yeah, but you can use the money for this. And you can use the money for that. It's a struggle to feel safe hold the line on what's important to you when other people are doing something different. We have a tendency to feel judged by somebody choosing something polar to what we're needing or doing, just because somebody else chooses CLBC doesn't mean I'm judging them for doing something different. Just because I feel so strongly about it. it's hard to find people and not feel completely isolated, which is hard when things are falling apart.

Mandy: 3:30

I'd like to echo that as well. when I have these conversations outside of this safe space with you folks, people think I'm high and mighty, that lesser of people for making whatever choices they've made. And I don't feel any less for anybody else because it's. It's difficult to stay with the vision. It's difficult to stay on the path of hope. It's easier to fall into these other spaces and places, but it just doesn't align with me. Not to say that what you're doing with your loved one isn't great too, and that I'm happy for you and want the best for you and your family I might not do everything the way I want it to go, but at least I'm trying to stay Somewhat on a path.

Heather: 4:35

I do get really angry when people are unwilling to be in conversation or reflect on the harm that their choices might have on other people. Like when it's like, I'm doing what's right for my kid, no matter the impact it has on everybody else. And that's hard. Like I have several examples of that, My youngest, Of my four, I always talk about like I'm talking about my oldest, but I actually have multiple kids with disabilities and my youngest, the EA was leaving the school. There was, never EA in the classroom. And when I queried it, I was told, well, they're, they're taking all the kids to, therapeutic horseback riding or to whatever bowling and I said, that's not right. My kid. doesn't lose the support because they're going out of the school, out of the community to do something. So my kid's losing. And the solution was, well, your kid can go to and I was so angry because my kid is losing opportunity to participate successfully at school and be included in school, which is what we're doing here, and losing access to real education, because there's this other thing going on that's taking the support away. People got really angry at me. For, suggesting, and I'll stand by this, that, those are extras, that all of those things that you get from that can be done within a community, and that when you take support out, you're actually harming all of the other kids in the class who deserve access to that support there's lots of examples of that where I will stand my ground and say, actually choosing segregation, choosing special can do harm.

Marta: 6:08

Well, I would say it actually does. There's evidence. That it does harm to the student as well, who's being taken out.

Heather: 6:16

It's not true when I say, everybody can choose whatever they want. I don't actually think that's always necessarily true because I think there are consequences that should be talked about.

Sandy: 6:25

And they're not getting an education if they're going skating or swimming.

Marta: 6:30

What gets in the way of when we're having this conversation?

Heather: 6:34

Low expectations or, social model that doesn't see. Disabled kids as, Expecting to have the same opportunity, like they're, I don't know exactly how to articulate it, but it's about expectations, I think, that their education is not as important as their therapy time,

Sandy: 6:53

They also believe that their kids are safer in a segregated setting. It's that simple.

Marta: 7:00

what gets in the way of having hope, or keeping hope, I think I have a lot of hope, through the experiences and, just what I've observed, and being with all of you. What gets in the way is similar to what you're saying, Heather, around, specific situations. I don't want to ever have people think that people in community are bad because they're not. we need to have more hope, and in that pathway, around actually not blaming community for not being inclusive. I think it's often us who are assuming that they're not inclusive and it's the fear that stops that. It's encounters. very specific one on one encounters that I have with people. When they might say something or treat my daughter a certain way it's those things that I get really taken aback. I don't know why I care so much about strangers. sometimes it's people I know, but it's those small encounters that really affect. it creates a lot of fear.

Heather: 7:58

It's the whole social construct and the blatant ableism. people don't even know the word ableism. when you're living along and you're so excited about your inclusion and you're feeling all good about how things are going. And then that, bigotry that, discrimination slaps you in the side of the head. It does. It takes your breath away. now I remember that people, really do say and believe, that my kid doesn't deserve what they deserve. that's a lot of fear for me.

Mandy: 8:26

What I think sometimes gets in the way of hope is safety. often people push us off our path by pointing out the safety and in the early years, I was on that safety train for sure.

Marta: 8:46

Many of us were, Mandy, many of us were. I,

Mandy: 8:48

I was all on board, both feet on that train, I like to just hang on with just a little pinky and if I fall off, Oh, well, we'll get back on later. You know what I mean? And so that safety piece, I think for service providers and our school team

Marta: 9:12

And all of those things,

Mandy: 9:13

the safety gets in the way of the vision.

Heather: 9:18

When our local pool built a water slide they tried to insist that my kid wear a helmet to go down it. I was like, what? They wanted me to sign a waiver and have the kid wear a helmet to get on the water slide. I was like, okay, but my other kids. I can drop off at the pool door, you don't know who they are, who they belong to, whether they can swim, whether they have a disability. You know nothing about these kids, except that they don't have a visible disability. And I can drop them back and not come back for 12 hours. I don't have to even tell you who they are or where I am. But my kid, this kid to ride the water slide needs a helmet and a waiver. So I took that a long way and it turned out to be a misunderstanding of how they were applying a rule. I did have to take it all the way to the top because safety gets in the way.

Mandy: 10:11

In the way. of like, rational thinking.

Marta: 10:16

Well, I've got a great example of that. My daughter was in the choir in grade four, and they were invited to sing at the Paralympics. in 2010. All sorts of schools came together and sang at the opening ceremonies. When my daughter found out, she was just so happy. The teacher pulled me aside, said, they're going to be going to the Paralympics opening ceremonies and sing. I said, I know my daughter's so excited. She's singing all over the house. We're just so happy for her. And she said, well, I can't guarantee she can go. And I'm like, oh, why? And she said, it's a big place, and we're worried that she might get lost, and what if she has to go to the bathroom? At first, I was shocked, I didn't know what to say, as I had time to process it we were telling our friends what was going on. It was like, she's going to the Paralympics, the most highly secured event. And inclusive. that's a whole other story. I said, that's a shame because this is the Paralympics. Doesn't it make sense that we should make an effort for her? And she said to me, Marta, it's not the Special Olympics.

Heather: 11:20

Shut the front door.

Marta: 11:22

I'm serious. And I just said, you've got to be joking. And she said, Oh no, no, I've got a friend who's blind. So I know, I know what it means to have a disability. when we talk about safety, it was already built in just like university, just like elementary school, just like high school. Safety is an aspect for all children and all human beings. and I had a friend, it didn't even occur to me, she's like, Marta, what if any other kid there has to go to the washroom? There's going to be thousands of children there. And what if they get lost? There's something in place for her. It's not a problem. And so we had to take it to the top. And of course, as soon as the superintendent found out, the principal called and said, I will be there personally to make sure she doesn't get lost

Mandy: 12:08

any kid could get lost in a big place. Exactly. On the way to the washroom. They wouldn't be sent on their own. They'd go in pairs or triplets or whatever. Yeah,

Heather: 12:20

you know what? It's one of the differences is, and this is so important, because the kid that's included They have all these other parents who will be mad with them, right?

Marta: 12:30

Yeah.

Heather: 12:30

So if you're a typical kid or, not intellectually disabled kids gets, gets lost, um, other parents are mad with you. Like people will write to school, that could have been my kid, why weren't the things in place? But when a disabled kid gets lost and your kid's been segregated, there's nobody to be mad with you. So it's another reason inclusion is important because, you have other families can see that your kid could be their kid. But when you're in a segregated group with only eight other families, that's not a lot of voices to be mad. They'll just say next time we won't take them.

Sandy: 13:04

One of the things we're concerned about is the fact that her home share may not be forever. So, we were thinking, maybe we'd better get her an apartment. the suggestion was that she get a live in person with her. But that's not going to work because she's now used to living semi independently without somebody sharing her living room.

Heather: 13:37

Why can't she adjust again? Just because she's not used to that. She wasn't used to living on her own before she was living on her own. She wanted to move out, It's good to be exploring all the possibilities, I share those fears because I can't imagine for my kid what, a living situation away from here looks like either. it's hard because of what's affordable, because we won't rely on traditional supports, it's a challenging thing to think about. But if we can think about what we're hoping for, instead of what we're afraid of, I think it's easier to put our energy into forward motion. What would we hope for them a space that feels safe where they have support they need. that they want to be in and that they have the security, The security of having a place that's owned rather than rented might be important to some people.

Mandy: 14:30

It's important to say in this podcast that for the, for the listeners, because they might be listening to our stories and think, Oh, well, that's, That's not for my child, or, we can't do that, and I don't know how those parents think that way. I'm terrified about my kiddo living on their own. I'm terrified of it, but That can't be the reason why he can't do it. And I think it's important for other families to know that even though we're talking this way, we're all freaked out as well. We're freaked out about all the things that could or couldn't happen. So I just wanted to put that out there

Heather: 15:23

Thank you, Matt. That's really important.

Marta: 15:25

fear creates more fear, And hope actually creates more hope. And I think about, my daughter's situation there was fear around her being in a place of her own. There was the fear around. the fact that she needed to get a roommate because financially, we could not continue to subsidize my daughter didn't want a supported roommate, she wanted just a roommate. She's a young adult, just finished her studies at UBC, She wanted to show people around who were interested. She wanted to lead that. We weren't able to support her that way. It was her own employees that did a really good job supporting her that allowed her to really say what she wanted. And she found a roommate This roommate is really nice. this roommate chose to live in my daughter's apartment, which I was like, just so fearful for everything. The rejection, there were so many layers of fear. Now, I have hope for humanity in general, hope begets hope now I feel like we all have this energy, including my daughter. She's having a positive experience. When this roommate moves out, there's hope that there'll be somebody else and they could be different they're not going to be the same. when I fall into that fear, it's so hard to get out and because you can just create fear on top of fear on top of fear. And it's having all of you and listening to Sandy's stories and Heather, yours and Mandy And experiencing those little pieces of hope that just give me the energy to be able to keep moving on.

Heather: 17:01

One of the things about an inclusive life. That is different is that things don't have forever timeline, and so that maybe does create some fear and anxiety, but it actually alleviates a lot of fear and anxiety for me because if their expectation isn't that it work forever, it's okay if it doesn't, and I'm allowed, we're allowed to try things you can have a really crappy roommate. If it's not forever, you can have a shitty job because it's not the last job you're ever going to get. it's not dependent on the funding model or the support or when somebody else's, schedule works all of those things that you get stuck in, in a service model when it's inclusive, it's like, well we tried that we liked it and now we hate it and we're just not doing it anymore. Inclusive post secondary being four or five years. creates this motivation because you've only got four to five years. You're gonna take advantage of that. We're going all into that because it's not forever, and then we'll go all into the next thing, the next thing might not last as long but I think there's some real advantages to this. It's not forever. You're supposed to outgrow it.

Mandy: 18:08

To build upon that it's that service model. mentality that you have to, pick, something and then stick with it, I think it's the stumbling block parents Fall into this trap, right? Like, I gotta pick the school they're gonna go to. I gotta pick if they're going to have a, have all these things or not have these things, You're pushed down a pathway and it doesn't feel like you can deviate from that path at all. That's the messaging you get from the. Professionals around you reminding yourself how many crappy roommates did I have between the years of 17, when I moved out until 28, when I first got married it's okay for things to change and pivot I think we sometimes take that luxury away from our kids. Not intentionally.

Heather: 19:15

It happens because we're afraid. It won't be stable, if you're in programs you have to justify leaving

Marta: 19:22

we're afraid there'll be nothing else. if you say no, you'll never get the option again because there's a huge wait list

Heather: 19:27

your funding, if you do something that's not compliant, they'll take your funding away I don't want to live there. It uses too much energy, and it doesn't build anything.

Marta: 19:37

Mandy I can remember us having these conversations your son's younger, and we live in the same neighborhood, so I'm familiar with the, service providers who exist. and, and the things that are offered. And, you know, we would have these conversations and it's a good sell. Usually it's a really good sell. You know, They'll be happy. They'll be with other youth and they'll make friends and, blah, blah, blah. They'll be busy. We certainly took advantage of them and learned for ourselves and our daughter included how those promises actually weren't real at all. When our daughter was younger, we didn't have families like you, we were just working on our gut. we had the opportunity, we could have Saturday afternoons off as parents, and it's like, wow, absolutely. We'll do that. she's happy. But then you got these, messages from her later on. where did you go today? We took the bus to, a bowling alley in surrey we live a very long way from Surrey did you play? No, we didn't have enough time to play a game because we had to be back. And so the whole event was on the bus, we had a party on site. When I showed up, everybody was so quiet. Why were they so quiet? And she's like, Oh, we played the silent game today. who could be quiet the longest we're talking about teens. We learned quickly, the promises that were being made, were the exact opposite. In our own life. life evolves and changes, and our, Family members need to have the opportunity to make those choices and changes when they feel it's needed. 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.