Vision of an Inclusive Life

Welcome to episode three. Of real conversations. Where we dive into a discussion about the importance of articulating our family member's vision of an inclusive life.
We also talk about, Why having a vision of inclusive life is so important. And the fact that we just can't do this alone and we need to surround ourselves with allies and people who have the same vision as we do.

I want to clarify a few things before we get started. You'll also find links to resources that we refer to in the notes.

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 and developmental disabilities. Immersed together with non-disabled peers, friends, neighbors, coworkers, family members, and community members. In their own neighborhoods, communities and cities. We envisioned and strive for the same life, path and opportunities that most Canadians have access to. For example, Growing up and being loved by your family. Going to school. Making and keeping friends throughout your life. Going to post-secondary. Having a career falling in love. Pursuing your own dreams and passions throughout your life. This is the lifelong inclusion we are striving for. And one, we believe has the best chance for our family members to experience the good things in life. A life that most of us take for granted.

Links and Resources:

Definition of Inclusion taken from Inclusion Canada:
https://inclusioncanada.ca/who-we-are/#:~:text=Inclusion%20only%20happens%20when%20the,life%20common%20to%20us%20all.

Transcript

Podcast Episode 3 Content

Beginning

Marta: ​[00:00:00] 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 adults 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 is a fully included, valued, and contributing member of society. Are there success stories we can learn from? Come, be [00:01:00] brave with us, and explore the endless possibilities.

Welcome to episode three. Of real conversations. Where we dive into a discussion about the importance of articulating our family. Member's vision of an inclusive life.

We also talk about. 

Why having a vision of inclusive life is so important. And the fact that we just can't do this alone and we need to surround ourselves with allies and people who have the same vision as we do.

I want to clarify a few things before we get started. You'll also find links to resources that we refer to in the notes. 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 and developmental disabilities. Immersed together with non-disabled peers, friends, neighbors, coworkers, family members, and [00:02:00] community members. In their own neighborhoods, communities and cities. We envisioned and strive for the same life, path and opportunities that most Canadians have access to. 

For example, Growing up and being loved by your family. Going to school. Making and keeping friends throughout your life. Going to post-secondary. Having a career falling in love. 

Pursuing your own dreams and passions throughout your life.

This is the lifelong inclusion our family members

Striving for. And one, we believe has the best chance for our family members to experience the good things in life. A life that most of us take for granted. 

Let's get started. 

Shall we?

Tamara: [00:03:00] to work towards.

. I like the way you intertwined and vision. And vision and how critical it is to envision how it can be implemented and to envision the reality of what it looks like when it's working in your mind in the future when you envision if she wants to be a hairdresser envisioning her in the various roles that it takes to become a a hairdresser. [00:04:00]

Mandy: I know we always want to stay focused on the individual, some of this work involves us as parents.

 And it's a bit of a roller coaster. For us to manage the ups and downs of staying the course of the vision, so me personally, , I can get discouraged by staying the course of the vision. Does that, does that resonate with anybody else?

Tamara: For me what helped me was the realization that we don't live in a binary world I didn't know that from other things just beyond me, but

You will make compromises and you will make compromises that you don't like and the important thing is to be real with yourself and You To understand that you've made this compromise because you need to make something work now and that the work is not about finding that perfect solution each time the work is about [00:05:00] moving out of that and into a better place because otherwise we just beat ourself out because we constantly feel like we're failing the vision, but really those identified as failures are really just opportunities that you've had to take.

In order to get to where you want

Mandy: that is such a powerful thing. You just said that it's the compromise, we try to make a simple, concise vision and you think it should be easy to implement. But as things get in the way, you do have to make some of those compromises and what are too far away from the vision to compromise on, like how far do you get away from the vision with your compromising before it's not in line 

Heather: with that vision anymore?

It's tricky. Yep, making compromises with a vision, like having that vision and holding it. When I [00:06:00] make compromises, I make them really carefully, like it's for a limited amount of time with a specific purpose. So we might do a pullout for a specific purpose for a specific amount of time, because it's going to make things more inclusive down the line, or it's going to create a different opportunity, 

that's why the vision is so important, because otherwise, it's all compromises. And it's very hard to get back to where you thought you were going, because we are constantly pulled to make those compromises system wants us to be doing something different. And so without that vision. It's really easy to forget why you decided something, why something was important.

an example might have been around, transportation around school. , there were times where I had to decide, okay, in order for my kid to get to do this thing, this school, this. Says that you have to go with the EA. You can't go on the bus or whatever the ridiculous thing was and I had to decide [00:07:00] okay What's the win here?

Like what? How am I gonna die on? yOu know for that semester or year or whatever Decided not to fight that fight. I chose another fight to have 

Most often it's even things like if we were doing swimming lessons, maybe when my kid was a teenager I would have agreed to have a peer helper as a volunteer when normally I wouldn't because I want them to be peers, but I might have made that compromise in that situation because it created a more, a better access, some access.

So I guess those are a couple of examples I can think of. 

Marta: In our lives, there's several elements of life.

 If you think about yourself, there's lots of things that you do, it's not just one element of life. There's exercise, go for walks, you have a job, you have your home. And so if one part of a person's life isn't working at the [00:08:00] moment, and if you're running into barriers advocating for inclusion, doesn't mean that everything else falls apart.

 Like Heather has suggest you could put a timeline. Okay, I'm going to do a 180 and we're going to focus on this right now because this is what I know I can manage right now. And then perhaps from there that will evolve and support that other part of that person's life.

So it doesn't mean if it's not working one place that inclusion can't happen. Inclusion is life. I think the other piece is. Is it like it's this is counter culture this is counter to anything that people are thinking about in the world today. And so we just have to expect that we're going to constantly run into barriers.

It's not going to be easy. 

Tamara: and also we're making compromises, other compromises, like with our family and with the other members and siblings. And it's almost like feel like I should explore not just [00:09:00] having a vision for my daughter, but also what is the parallel vision for us as a family and how those things can compromise each other and have an understanding so that when you go forward, you're like prepared okay, this is going to be a challenge.

How can I figure it out? Because I think for mothers, it's heartbreaking sometimes when doing one thing will impact, and this is true of all families, doing one thing will impact one of your other children. And how do you balance that? 

Heather: yeah, this vision for my family was never about. one person. It's the reason it evolved, right? We got into this conversation because when, the only vision we were offered for our oldest child was so uncomfortable for us that I was like, that was what was devastating, was being suddenly told, this is what your life, this is the best you can hope for.

And this is your life. And if one more person sent me that welcome to [00:10:00] Holland, Letter, I hate that. And that's okay that's someone else's story, right? The problem with that is that it was one story and it wasn't mine. And I needed a different story. And so when I found my other person, at a ridiculous Therapy focused playgroup sitting in this situation with all these other parents wondering how, why, what, how did this happen?

 Counseled to come to grips with a future that felt awful. That's what happened is that we created a vision for our families. And that vision, that visioning led us to connections with these other parents who came before us who'd done all these amazing things, 

Heather: That's really important to me, and I hold that this is a vision that makes my life better and more interesting. It's not really a vision for one person. And that's also how we found our allies, it's like trying to find other people who want to walk in the world this way and be inclusive.[00:11:00]

The most powerful thing I did was actually make friends who have disabilities. of my own. That changed everything. Because now I can honestly say I know that's possible. And real and invaluable, 

Marta: What I'm learning about vision is that, there's layers to having a vision. There's that overall vision that Heather's talking about. That she was really fortunate to have in the early years that's the North Star.

It's like the guiding light. It's that the vision of an inclusive life like you and I have the privilege to live and the choices that are involved in that. And then from that vision, there's the vision the person and what they want to do and how they want to live their life.

 When they're children, the parents have the vision and they're giving their child lots of, opportunities to explore. And this would be the same for child and any family. And as they get older, then they have more [00:12:00] ideas about what they want to do, hopefully.

And that's where their vision comes in. I think sometimes where it gets confusing with families, and it was confusing for me when our daughter was younger, is around. That vision still needs to be in places and spaces in the community that are inclusive, like that, is still part of inclusive life.

So I think people get trapped in the thought that okay, so my, student. wants to get a job, so then I'll put them in pre employment disability , classes, and that will lead to an inclusive life. What we're saying is that same things that exist for you and I and our other children who don't have disabilities can be beneficial and are beneficial for our kids. To continue reaching the goals that that are part of their vision of how they want to be or who they might become 

We can't do this work alone

Mandy: What I find so [00:13:00] valuable about this. So what I want to do next is that each of you stretch my thinking, like when 

I'm stuck on a problem or 

what I perceive as a problem to inclusion, you guys re grease the wheels to get me thinking. You might not give me a solution, but you just give a safe space to talk about the frustration of it.

And the inequity of it, and that it just allows me to re motivate myself to start thinking okay, where can I turn? Where can I pivot? What can I try? What is okay if I try and then fail? Am I moving the machine forward? So you guys are the grease to help move the machine forward? Why [00:14:00] I want to be surrounded by other people that are talking this way, thinking this way, and 

Heather: getting there.

Yeah, I agree with that. It unlocks the right questions for me. I know the questions, but when I'm stuck, and I'm feeling, I'm all up in my feelings about this doesn't feel good, or I'm mad, or whatever. It's really hard for me to figure out what the right questions are to be asking. So having somebody else Help me formulate those questions really is helpful and that's always been such a gift have other people that you know the guiding principles, help formulate those questions to but having other people work through them.

That's everything. 

 An inclusive vision or a vision of an inclusive life. Why is it so important for families to have that clear vision and to be able to articulate it?

Mandy: I just want him. to be able to have [00:15:00] the same things that we all get to do. Go to the pub and have a drink if he wants to have a drink. Have sex! sMoke pot get a pet, the simple things in life that aren't even available when you don't live an inclusive life 

Heather: I just love that you picked those things.

I love that, that those are like, you're right, you're totally right. You are. It's also the things like, have a job, 

Mandy: the regular things that are available to all of us, and that's what makes me, keep moving forward, because it's frustrating to me, because the things that, that he's been talking about for ages, is a dog, is a job, is his own apartment.

And I can't not [00:16:00] provide the space for that. I just can't. So I have to figure out how are we going to make those things happen for him. Those are just the fundamentals of living a good 

Marta: life. Yeah, and the scary thing is that you don't hold that vision or if you aren't able to articulate that and be able to say, this is the life I want.

Somebody else is going to have their own vision. And we know what that could lead to because, again, what we're dealing with is an idea that most people don't 

see. 

And so that other vision that somebody else might have could be the exact opposite 

Heather: Being able to articulate. 

Articulating the vision

Heather: Vision, the why of it all is where all of our allies and all of our successes came from. Like I, when I provided those principles and the vision at an IEP meeting, people, it resonated, right? People are like, Oh yeah, that's a good life. And now I know what you're asking me [00:17:00] to do.

Of course, not everybody came on board, but those that did were like, Oh, that's what you're asking. I can do that. I know what that is, and that's really important because people aren't asking for it, , we aren't given permission when our kids are little to even imagine this.

And so when you can articulate what it is you want and why you want it it's much easier to get people to go, Oh yeah, I can do that. It's so much less scary. And I think a lot of the time, particularly at schools, they're getting so many people are just mad that they're not getting, support is not getting enough of anything, and so it's really hard to figure out what to do. So when you can articulate, this is what I want you to do, and it's actually easier if you just do what I'm asking. Then I think that's been my experience that people are much more likely to come in line. They feel empowered.

They feel braver. They feel like they don't need any special training to do what I'm asking them to do because it's just what . You ask for anybody else. [00:18:00] And that, that has made, that's been magic, actually, in lots of 

ways. 

 Volunteered at Woodlands helping people make flowers for weddings. And I would go in once a week and they would come into the workshop and they were really happy. And sometimes they were mothers and we would chat. I was in my early 20s and it was, older women. But they would chat about their experience of having to feeling it was the right thing to institutionalize their child.

Heather: And how they felt that was the only choice they had and that they had to do it like they got that from their family. They got that from the medical practitioners. They got it from society. And I never questioned it. It all looked correct. And the people look happy and they look care for it.

And took me having a child with a disability and especially twins to realize we see what we hope to see. And and I think that's happening in the community living movement right [00:19:00] now. I look at home shares and other situations and it's solving a very critical housing problem.

I don't want to knock it too hard, but also we're not seeing the things that, 10, 20 years from now, we're going to be accountable for and I have to ask myself if I could be so blind before, what am I being blind about now that I'm not seeing and. My daughter's life and, the quality of her life and how independent in the sense that she can stand up to somebody who has a different vision for her than she wants for herself.

Marta: For our family, , I often, , I expect the worst. I expect that actually the first thing might be that people will talk to her when they need to talk to her, but not go up to her at other times.

Which is really unfortunate, but I think what I can do if I know what potentially could happen, then the work that we do behind the scenes and the support of an inclusive life is to actually 

Bend over [00:20:00] backwards to make sure that doesn't happen. And that's where I think the hard work it's really hard work and especially if we're not there, as you said Tamara, we can't be, we don't want to be with our family members every moment of the day because they don't want us there.

And they want you know we want them to be able to be out and connecting with people and society, the woman I spoke about earlier who had the Ted talks, , she called her son, the invisible man.

And she said, how is it possible that I could be in community with my son and nobody sees him? How is that possible? And then as she spoke, she switched that role and she called him the change maker. How come people don't see him as a change maker, as a storyteller, because he's great at talking and has these wonderful, robust stories to tell people.

And so she was able to flip it, 

Mandy: I think some of my observations of how people view folks with intellectual disabilities, [00:21:00] it's just that they don't have any reference point. They've maybe never talked to anybody with an intellectual disability, so they haven't, they don't know what to talk to them about, 

and You just talk to them about anything that you would talk to anybody else about, but there's so much fear they're gonna act inappropriate or say something inappropriate or do something that person's not going to know how to handle it. . And so It's so sad he is like the invisible man in general population.

He has found a place within the trans community that they value him as a person, and they actually see him as a person, and want to talk to him, want to get to know him. and are comfortable with that. How [00:22:00] do you make that for the general population? What life experiences have folks in the trans community experienced that allows them to see people?

Marta: I'm not a trans person and so I could never speak on their experience but I would. Like any group of people who have been marginalized, they will be able to understand what it's like to be different.

 . I think you've talked to me about the fact that disability doesn't come first in that community. And it's not like you introduce as somebody with a disability and he doesn't introduce himself that way.

Marta: And so he's giving his strength. And that's a community that actually is recognizing the strengths. And for me personally, I'm really trying to always, introduce my daughter without [00:23:00] using any disability language whatsoever.

 I feel like. , that's the perfect example of a community that sees his value and worth, and not that other stuff that, unfortunately, the school system that's what they see, that's what they're writing in their reports, that's, , the disability is front and center, 

Mandy: I'm going to share a story when I first met you, Marta, and you didn't describe your daughter by her disability. I was like, This is so embarrassing to say, but I was so dying to know what was wrong. And that is so horrible to even say out loud. I was like, how can she 

not tell us? 

And I, and it always stays with me because I, it's true 

how [00:24:00] do you start reframing so that isn't what first comes out of your mouth, right? And we're seven years later and I still describe his disabilities on many occasions, because 

Tamara: we've been trained that 

Mandy: way. Yes, exactly. And how 

And how many times do people come up to you and say, oh, I'm curious what your daughter's disability is. And I would answer.

Marta: . And my husband and I were just talking, the other day, I'm like, we have to practice what would I say? It's a really deeply personal question. Why is it okay to ask us that?

Or to ask our children that? 

Tamara: . But, anybody who is different gets that. Yeah. When I had twins, people would come up and physically grab my bug, buggy to look to have time to look at the girls because they were twins.

They don't look anything alike, but they were the same [00:25:00] size and it was obvious but it shocked me how many times people would either stand in front of stroller, the two seater or Stop me in a restaurant. And ask me personal questions.

Did you know you're going to have twin? Blah, blah, blah. And I started noticing that anybody who is different becomes public property. That you lose a right to your own control of your personal information. That people feel that they have the freedom to ask you about it.

And it's a weird phenomenon, but what you were talking about, Mandy, I think is it's the essence of the work that we're trying to do with our vision having people see

who a person is before they see what their challenges or where disabilities are. And yeah, I dive curiosity. I [00:26:00] think they're not really that disabled, if you're not talking about it. I realized it's because either innately or due to a lot of discipline that person is mentoring me and seeing the individual.

And seeing some aspect of that individual that invites me into their life because we share that interest. And I think. When we talk about vision, , that is the essence of the work that we're trying to do. 

Ending

Marta: Well,

That's a wrap, folks. Thanks so much for joining us. And for all our contributors, Mandy, Heather, , Tamara, I love hearing your stories. If you liked what you heard, And you're looking forward to hearing more, please follow us and [00:27:00] 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.