S11 E12 Heather Avis from The Lucky Few on Intentional Inclusion
TTim VillegasDec 14, 2023 at 12:58 pm58min
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00:01Speaker 1
The starting point is I want my kids to walk into a space and be seen as fully human. That's really it and, and to not have they're not have their humanity and their intrinsic value and worth questioned because they have a disability. That's what I want
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00:21Tim Villegas
Hi friends I'm Tim Vegas from the Maryland Coalition for Inclusive Education and you are listening to think inclusive, our podcast that brings you conversations about inclusive education, and what inclusion looks like in the real world. Heather Avis is a author, speaker, and advocate for individuals with Down syndrome. She is the founder of the lucky few, a foundation that aims to shift the narrative around Down Syndrome and create spaces of belonging for everyone. Heather shares her personal experience as a mother of three adopted children, two of whom have Down syndrome, and uses storytelling to challenge societal perceptions and promote inclusion. In this episode, Heather Avis emphasizes the importance of intentional inclusion, and the need for a shift in the narrative around disability. She shares personal experiences as a parent and highlights the power of storytelling to change perceptions and create spaces of belonging. Heather also addresses the challenges of advocating for inclusion and the ongoing work needed to dismantle ableism this week's episode is brought to you by Brooks publishing. Do you believe that all children with and without disabilities deserve to reach their potential through inclusive education? If so, you will love Brooks publishing, the premier publisher of books and tools on early childhood special education, communication, and language and more. Brooks publishing has been partnering with top experts for over 30 years to bring you the best resources for your classroom, clinic or home. To learn more, visit Brooks publishing.com. To browse their catalogue, read their blog and sign up for their newsletter, Brooks publishing, helping you make a difference in the lives of all children. And just for thinking cluesive listeners, visit bi T dot L y slash Brooks dash giveaway dash 1223 to put your name into win a copy of equitable and inclusive IEP is for students with complex support needs by Andrea Ropar and Jennifer Kurth. We will be taking names until the end of the month after a short break my interview with Heather avis.
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03:25Tim Villegas
For those of our listeners that don't know about the lucky few if you could just explain what that is and all of the things that you have available for families.
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03:34Speaker 1
Definitely. i So i i live in Southern California with my family. I've a husband of 20, almost 21 years and then three kids. My oldest is 15. Her name is Macy and she has Down syndrome. My middle daughter is truly 12 years old. No disabilities and my son is nine and also has Down syndrome. All my kids came to me through adoption all born in Southern California. All came to me as infants. These are like high level questions people want to know right away. Okay. And prior to having a child with Down syndrome, I was also a special education teacher. I have a mild, moderate and moderate severe teaching credentials. And I taught resource at high school and then moved over to their living skills program as a teacher for the Living Skills Program at that same high school. Then when my oldest daughter Macy came home, I stopped working and I stayed home and, and entered into a whole different world as an advocate for the disability community. Being a parent to a disabled child versus loving my disabled students is it was a very different experience for me radically so. So Macy enters my world and when we were adopting her, we heard about her in passing because we absolutely said no to a child with a disability. She had a congenital heart defect she had all these issues she had pulmonary hypertension was on oxygen 24/7 I mean aside From Down syndrome, she was medically fragile. It's a very long story. But I, we ended up saying yes to her, bring her home. And I'm hold I have a moment holding her. I'm like, she's, she's an amazing baby. Like, what? What were we so terrified of? Why was this such a hard? Yes. And realizing that out all the outside voices, even as a special education teacher, and maybe especially so if I want to really pick it apart, we're saying, having a disabled child is bad. No one's saying Those were some people say those words out loud. But that's the messaging. This is bad. This is tragic. This is a sad story. And then we have this baby with Down Syndrome and, and our lived experience with her is quite the opposite. Absolutely, there's hard moments really, really hard moments. I think that just as parenting, but there are layers there having a child with Down syndrome, that make it harder than it should be. I don't usually use word should often, but I think it's appropriate here. And, and having to like, navigate that, yes, that's true. But then having any kind of kid can be hard. And most of the things that are hard about having a child with Down Syndrome have nothing to do with Down Syndrome and everything to do with the system that rejects them, and doesn't work for them. And so learning all of that. So that's bringing Macy into our lives. And then I had a moment one day at the park, it's so clear to me where Macy was taught she she didn't walk till she was three, she would scoot on her butt. And so she's like, kind of toddling around scooting around. So I'm thinking she was around two and a half years old or so. And I'm at the park. And there's all these moms with their kids. And I thought Macy is the only kid here with Down syndrome. There's not one other kid here down syndrome. And I felt so lucky that she was mine, like I get her, this kid gets to be my kid. Wow, I'm so lucky. And that really birth this idea of shifting a narrative around Down syndrome that is negative and scary and bad to one that's like, actually, I'm really lucky. And, and then interacting with so many people in the downstream community, people with Down syndrome, their siblings, their grandparents or parents who had a similar journey is similar experience where something that was negative than that, like this isn't I don't feel bad about this, oh, I actually feel lucky. And that we're kind of resonating with the Down Syndrome Community, not everybody, I have met people in the community that don't feel that way. And that's their own journey. But I would say 99% 98% of the people I've interacted with, have similar feeling. And so around the same time I started blogging, and then social media, Instagram came on the scene. And I started using the hashtag, the lucky few. So a few of us have a loved one with Down syndrome, those of us who are very lucky. And you know, the first few posts, it's just our family, our family. And then like little other people start popping in and always connected to Down syndrome. And it just took off within the community, really the community. I feel like grabbed on to that, like, Yes, this is how we feel, this is what it's like. And so then it grew into a book deal. And then I had offered opportunities just came my way I started speaking and started traveling and doing that whole circuit. I have four published books now. And then we had started a podcast called the lucky few podcast in 2018. And then we started a foundation that's really all about telling the bigger, fuller Down Syndrome story so that people can see themselves in the narrative, we're really the lucky few is all about shifting the Down Syndrome narrative. And creating a place in the world where everyone can belong. I believe that when if one person doesn't belong than actually nobody does, that belongs actually doesn't exist until everyone has it. And so telling a story that helps the society and systems and humans see the full humanity in a person with Down syndrome, and hopefully open up their world to that person and create space, the belonging for everybody. So those are the the areas that we are that's how the lucky few came to be. And that's what we do in a nutshell.
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09:02Tim Villegas
I love how you just you shared those specific vignettes of you know, being at the park and you know, being at home with macing. Right? Makes sense, right? Because I think storytelling is so important, and it's really what changes people's minds. I agree, you know, and moves narratives, change changes people's perceptions. And it's something that we say a lot in just our apt advocacy of inclusive education is I could give you a stack of research that says inclusive education is not only the right thing to do, but it benefits all learners but that's not going to change how you view inclusive, inclusive education. You experiencing it yourself in hearing stories of it changing people's lives like that. That is what changes systems. And, and so anyways, I just that resonated with me and I'm just so happy that you are in the world doing what you're doing. So
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10:16Speaker 1
yeah, I think storytelling is the thing that connects the human, one human heart to another and gives you I think that the it's a piece of it. I mean, you have you can't know what you don't know. So it opens up, it's an invitation into understanding something you didn't understand before. That relationship piece, I think is catalyst for the real, real change to happen. But I think the story is that the invitation to a relationship in some regard. And that's why I think too, and in like such a, we're just immersed in social media, and there's such a comparison. And the amount of people I've met that are like, well, I don't have a good story to tell, or my story is not as good as or my story isn't as important as like, no, no, everybody has a story to tell, you have to tell it. Like saying to the teachers who for the first time had my kid with Down syndrome, the 30 years, I've never had a kid with Down syndrome. Like you have to tell your you have to tell the story. However you do it, you're going to tell a really good story because it's yours, and no one else can tell it. So here, write it down here, I'll share it, you know, like, let people just need a platform and a little like, nudge to know, like, you don't have to be a professional writer, storyteller. Your story is uniquely yours. And that makes it so important. No one can tell it. So do it. Tell it? Because it's right.
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