Diana Pastora Carson:
Hi there. Thank you so much for joining me today. Before we get started with our amazing guest, I wanna tell you about a brand new disability awareness educators guide that I am so excited to announce. It's published through National Professional Resources Inc. And it's a trifold laminated Beyond Disability Awareness: An Educators Guide that really takes everything that you will find in my books and on the podcast, and just gives you...It's kind of like Cliff's Notes of disability awareness in a way that's respectful and founded in research and a social justice lens. So if you're interested in checking it out, you can go to DianaPastoraCarson.com/store, and you'll find a link there. Now, let's get started.
Diana Pastora Carson:
Welcome to the Beyond Awareness: Disability Awareness That Matters podcast. Here you will find a safe space to learn and grow with leaders in education, disability studies, disability advocacy, and diversity, equity and inclusion conversations. Specifically, we look at how disability fits into diversity, equity, and inclusion, and how to frame disability awareness in the context of educating K through 12 communities. This podcast serves educators, parents and community members who strive to learn and or teach about disability in a research-based and respectful way, moving beyond simple awareness and diving into inclusive and socially responsive conversations. Thank you for joining us today. Now let's go beyond awareness.
Diana Pastora Carson:
Hello and welcome back to Beyond Awareness: Disability Awareness That Matters. Today, I'm excited to have a wonderful guest who's created an extraordinary film that I would love for all of my educator and family audience members to get out and watch. You'll know why as soon as you hear Olivier Bernier share his story with us. Welcome, Olivier. It's so nice to have you here. Thank you for joining us today.
Olivier Bernier:
Thank you so much for having me.
Diana Pastora Carson:
So let's just start with you sharing your story, your journey, the foundation for this film, Forget Me Not, that you have produced.
Olivier Bernier:
Sure. Well, I guess the journey started when our son was bornalmost six or almost seven years ago with Down Syndrome. And that kind of set us on this path to, you know, figuring out what we wanted for him. And that led to us ultimately making a movie about our experience.
Diana Pastora Carson:
Tell us a little bit more about what that journey was like for you.
Olivier Bernier:
Well, when our son was born, his name name's Emilio you know, being born with Down Syndrome and us finding out in the moment that he was born I realized that I was completely unprepared for him because I had never met anyone with Down Syndrome both adults or children, really. And I started to think back why that was, and I realized, well, you know, they were hidden from us. I went to a school, for example, of 3000 people in my high school, and I didn't meet anyone throughout the day that had a significant disability. So when I started to look at that, I realized that there's really an injustice there, that they're being hid from us, not only for the people with disabilities, but for neurotypically-developing people like myself that, you know, we're completely oblivious to this whole other world that exists for people with disabilities.
Diana Pastora Carson:
So you decided, so when you, at some point you and your wife, Hilda, decided that you wanted for Emilio to be included, why was that so important to you?
Olivier Bernier:
Pretty early on, we realized that what we wanted for Emilio was the same thing that we wanted for the child we thought we were having, which was to be included in society and to be able to achieve his full potential. And I really think there's only one way to do that, which is to be integrated in society. If you're told from a young age that you don't belong, you become disenfranchised, and, you know, that only leads to, to bad results. So I think pretty early on, I mean, within days we talked about it, that that's what we wanted for our child. You know, there was a lot of soul searching, but we said, whatever we do, we're just gonna bring him up like any other child. And you know, that kind of led my naive thinking to say like, well, we'll just get him into school, into regular school. I don't want him to go to special class and be hidden like all the children that were in my school. I thought it would be easy, you know, we lived in New York, which was a pretty progressive city, and I just thought that's the way things were done now, , and, you know, lo and behold, that was as far from the case as could be.
Diana Pastora Carson:
So you were, you must know now, you must know that the way you and Hilda made that decision is quite extraordinary because as parents of a newly diagnosed child, you have a lot of input from the medical professionals and from the educational professionals, right? So what was the system? What were people telling you about what you could expect for Emilio at that point?
Olivier Bernier:
Yeah, you know, early on we really had no conceptual understanding of what life would be like for Emilio with Down Syndrome. And, you know, the first 24 hours that Emilio was born was extremely difficult for us. And I think the medical team we had, his pediatrician in the hospital was amazing, and she was so helpful. But in the moment that the diagnosis was shared with us, it was very uncertain. And it was very like, you know, he shows five markers of Down Syndrome, but it could be something else. And we just weren't sure for the first 24 hours. And, you know, we had this natural thinking, well, maybe, maybe they're wrong, you know, maybe they're wrong. And then the head geneticist of NYU Medical Center came to our room at 9 o'clock at night after us being awake for 56 hours.
Olivier Bernier:
But he was in a conference all day, and the pediatrician was personal friends with him. And, you know, he came over to speak with us, and he looked at Emilio, and, you know, within five seconds he said, you know, Mr. And Mrs. Bernier, your son has Down syndrome. And, you know, that moment was very, I wanna say eye-opening because it just suddenly we were able to let go of, you know, this idea that we were gonna have a child, a neurotypically-developing child, and then we could just look forward and kind of think about what's best for Emilio. And you know, he said one other thing, which I think set us on this path of us just wanting him to live as normal a life as possible, which was, he said that the geneticist said that when he was born, his parents didn't know if he would be the head geneticist of NYU or if he would end up as a drug addict. And, you know, the only thing his parents could do was to give him the best supports possible to achieve his full potential. And we took that to heart, and that kind of led us on our, on our path to wanting Emilio to be included in everything.
Diana Pastora Carson:
In the film, you document some of the exciting moments where he reaches his developmental milestones, right? You know, so you had that, your focus was on that aspect of being a parent. Did you anticipate that a lot of your energy as parents was going to be dedicated to not just nurturing Emilio and providing a stable and loving home environment, but that it would be dedicated to actually having to advocate for the system to also embrace him? I mean, did you have a sense of that early on, or what was that like when you discovered that not everybody thought about Emilio the same way that you did, and what Emilio's potential was the same way that you did?
Olivier Bernier:
Yeah, that, that's certainly true. And when we started early intervention for the first couple years of his life, everything seemed kind of easy. He was, he was diagnosed with Down Syndrome, they gave him all the therapies. Everyone just came to our apartment. You know, we soon realized that that was kind of hindering his social development in some ways because, you know, it was almost like, you know, five hours a day of him receiving some kind of therapy that he wasn't able to go out and just play with other children. And it was difficult on Hilda. She had to stop working. My wife, she had to stop working. And, you know, it was a full-time job. Those therapists, a lot of them were absolutely phenomenal with Emilio, and they just saw a potential in him, and they gave him, you know, everything they needed.
Olivier Bernier:
So that, that kind of made us think that that would continue when we went into the education system, when we were switching from, you know, the medical early intervention to the education system. To take a step back, Hilda was also a special education teacher. So she had worked in a high school in an inclusive setting, both inclusive setting and, you know, a special class. And she had seen the difference between the two. And she wasyou know, she was a professional that believed in inclusion as well. And, you know, I had that in my mind that, oh, they're doing inclusion, so Emilio will be included. I will say that, you know, there were some therapists that didn't fully understand the concept of him being included that didn't think it was necessarily possible. But I happened at that point to be making a movie about inclusion.
Olivier Bernier:
And I got to see all these wonderful places where inclusion's being practiced, you know, in the second year of his life. And I got to meet all these amazing experts and talk to all these people both on and off camerayou know, in UNICEF and all these places. And it just seemed really clear that inclusion was the only way forward. It was statistically the best way forward. It was, you know, anecdotally the best way forward. And then when we went into Emilio's first IEP meeting, that's when we hit our first wall, which was an administrator that just did not see it our way. They saw Emilio with Down Syndrome, and children with Down Syndrome go to a special class, and that's kind of the bureaucratic wall that we were up against.
Diana Pastora Carson:
Wow. So fortuitous that you were actually working on a film that was revolving around inclusion, that was a huge pivot for you. So what made you, what made you decide to document this journey in a film format? And what I mean by that is that this could have really backfired. You exposed some really negative realities of our education system, and as you said, Hilda, your wife was a teacher too. This was a risky decision for both Emilio and for Hilda, potentially, but you put it all on the line.
Olivier Bernier:
Absolutely. You know, when I look back on it, I kind of wonder what the hell I was doing . But you know, the truth is that the movie that came out isn't the movie that we started making. So when we started making the film, it was really just an exploration of what inclusive education was and how it benefits children. So it was much more of a cerebral look at inclusive education. You know, we kind of started with Tom Hehir's research and used that as our launch point. And I just wanted to share with the world in an accessible way about inclusive education, something that I had never thought about before, had children, and certainly something that, you know, I felt everybody should know, especially if you have young children. So when that when the film, you know, started, it was a very different film.
Olivier Bernier:
And as I'm making this film that looks, that's truthfully, a positive film that looks at the promise of inclusive education, Emilio started going down a track of being segregated. And that's when I started looking at the history of segregation, you know, the institutional era and kind of how that's been transposed into modern day education. So at some point then I sat down and we said, you know, we have a choice here. We can start really focusing on documenting what's going on with Emilio, and share that because I think it's a firsthand experience that not many people have seen before, or we can keep making the other film. And eventually we decided to, you know, that by making the most honest, personal, transparent film possible, that maybe we could affect change. And that's what we did.
Diana Pastora Carson:
Yeah. Well, you said not many people have seen before. I think a lot of people have seen it in the reality in their own lives, right? But not documented the way you have done so beautifully in this film format. So it's really helpful too, I think, you know, parents who are on a journey and just need some courage and knowing that they're not alone in this journey, but also to educators to see what the resistance does to families and children. So why do you think there was so much resistance to education? Where do you think that stems from in our society?
Olivier Bernier:
I think that you know, as Sue Swenson says, it's just because the way things have been done before, and really we're, we're born with this mindset of ableism. You know, we're, or I should say we're not born with it. It's learned, it's taught to us . Yeah. And, you know, it's true that we value people based on what they can contribute to society, and in America that's usually a financial aspect to it. And I think that's, that's really unfortunate. You know, so I think that looking at it, you know, it's really, you know, the history of institutionalism started with this sense of ableism and the institutions went away, but the mindset never did. And I think that still propagates in our current education systems, especially the large ones, that would really have a hard time pivoting.
Diana Pastora Carson:
Yeah. Very well said. Thank you. Thank you, Olivier. So did it work, you know, did your advocacy work? You had an advocate, you were documenting this journey, you were going to all these meetings. What happened? Where's Emilio now?
Olivier Bernier:
Well, at first it didn't work. We went to the first meeting and we failed miserably because we went into that meeting thinking this was gonna be a conversation we knew Emilio best. They were going off data that was from a couple hours of evaluations, and they would listen to us. And Emilio was in the room. I mean, he was reading books like he was putting on a show to be honest with you. And you know, so we just thought it would be easy, and we really quickly decided that we needed to reconvene with an advocate because we were in over our heads. And the truth is that most parents listening to this will know that it's an extremely emotional experience because they're kind of deciding the future of your child at two and a half years old, you know, almost three years old.
Olivier Bernier:
And, you know, if, if your child goes into a segregated setting at that point, it's likely that they're never gonna come out of it. And, you know, to make that decision based off of a couple of evaluations, it just seems really illogical to me and, and to most people. But I don't think they had the worst intentions for Emilio. It's just the way things have always been done, and they keep doing 'em that way. So we kept fighting and we finally got Emilio in kind of a trial inclusive setting for preschool. And we're, we're talking about preschool here, by the way, which, which is mostly play. This isn't like a rigorous like, I don't know, third grade or something. It's preschool. And they wanted to segregate him, and we just thought, no, we're gonna put a line in the sand here. They finally relented and gave usyou know, I don't even know what you call it, like an exception, o where it still said segregated, not in his IEP, but they allowed him to go to this one school where he could be included.
Diana Pastora Carson:
"Allowed" Him.
Olivier Bernier:
Right. "Allowed."
Diana Pastora Carson:
Air quotes.
Olivier Bernier:
Yeah. That's the key. Yeah. You know, theyyou know, and they said that if he could, you know, essentially like if he could prove himself in that first year, then the second year they would remove the, the 12-1-2 or the segregated recommendation. And he did it. He did it. His teacher was really happy with his progress, and he did it, and it didn't do anything for him. He was, you know, in his second IEP recommended for a segregated setting. And at that point we had to, you know, start legal action. So, you know, both my wife and I are relentless. We're both stubborn, maybe to a fault sometimes. But we justlike I said, we drew, we drew the line in the sand, and we were also documenting it. And we knew that we had to show people that, you know, we could prevail.
Olivier Bernier:
And eventually we did, you know, in huge part thanks to Sarah Jo, our advocate. We got another temporary IEP, and at that point it was the pandemic, a temporary inclusive IEP. They were gonna give him a six month trial, and we, we took that recommendation and we went to another school district you know, mainly because we had had a second child on the way, and we wanted to move into a house. So that meant moving out of the city. But you know, today Emilio is fully included in kindergarten, and he's rocking it, he's doing amazing. is, we've seen a development from him that quite frankly, we never know what to expect with him, but we've seen a development that's just exceeded any kind of expectation we've had. So we're, we're really happy. We think he's really happy, which is the most important thing. And, you know, he's still, he's still young and I don't think he fully understands yet, like kind of this process, but I hope one day that he sees us fighting and advocating for him and that he can, you know, take that on for himself.
Diana Pastora Carson:
As a former kindergarten teacher, I just love that story. I wish I had had the opportunity to have Emilio in my class as I had many other students with disabilities fully included in my class. And so my question is, was the district that he's currently in and being included in, is it the same district or did you move out of that district when you moved?
Olivier Bernier:
We ended up moving out of that district. We're actually in New Jersey now, which interesting enough, New Jersey is actually, you know, statistically worse at inclusion than New York, which I didn't know at the time. But we moved to a district that traditionally hasn't been supportive but they have been supportive of Emilio. So I feel like we're lucky. You know, and his next IEP is coming up in about a month, and we hope that it continues, that they continue to support him. We feel like he's showing a lot. His teachers are happy with his progress. So I think you know, but you gotta take everything with a grain of salt. Who knows what, you know, what they have on their agenda on their side.
Diana Pastora Carson:
Do you think they saw the film?
Olivier Bernier:
So I, they hadn't seen the film. I don't think you know, when we went into our first IEP meeting, but we actually just had a screening at a local university here, and the screening had a lot of people watching, both virtually and in person. And we did hear feedback from some of his teachers. So they have seen the film now, I don't know if the administrators have seen it. But so many, there was such a positive reaction. I think we've always been concerned. We've been trying to like shelter Emilio from the film in a way, because we didn't want it to negatively impact his trajectory in any kind of way. But it seems to have had a positive impact, actually.
Diana Pastora Carson:
Oh, that's so great to hear. Congratulations.
Olivier Bernier:
Thanks.
Diana Pastora Carson:
What are your hopes and dreams for Emilio? I know you had said, you know, just like, what are the general hopes and dreams, but now that he's growing a little bit more and you see some of his strengths and you've met other people, not to put him in a box and say, this is what's gonna happen, but what do you and Hilda, and what do you think you can't speak for all parents, but what are some of the, the basic things in life that you would love to see be outcomes of his inclusive life?
Olivier Bernier:
That's a great question. I, I think we think a lot about that, and it shifts, you know, as his interest shifts, like any other child he's always been very into music and dancing and different arts. Soyou know, I could definitely, I definitely want to keep, you know, enforcing that and giving him the opportunity to explore those things. But I think, you know, on a different level, what I would like Emilio to be is someone that reminds people that we're all different and that we all deserve a place in the world. So, you know, whatever he does, I just hope that for him, that he has the opportunity to live amongst us and to, you know, prove people's misconceptions wrong. So, you know, whether it be him working or him just being out and about, you know you know, now, now I'm, I have a, a different lens on the world and I just see how much people with disabilities add to our lives and, you know, I want him to be able to do that for people as well.
Diana Pastora Carson:
Yeah. Where do you and Hilda find peace and balance amidst this fight? You know, how...you've had, it's, it's a big fight. There's a lot of resistance, and it takes its toll. Have you, have you found a place for forgiveness? How do you feel about the people that have caused you to have to fight in the past? You know, where do you find a sense of balance through it all?
Olivier Bernier:
That's a great question, and probably not something I think enough about . I think, you know, the moments that stick out to me are the ones where I'm just in the backyard with Emilio when we're throwing a baseball and playing together. You know, those moments are the ones that really make it all worth it.
Olivier Bernier:
So you know, in terms of balance I think a majority of our, our lives have been spent advocating for Emilio. We talk about it at dinner a lot. We talk about it, it's just always on our mind, like, what's happening with Emilio? What can we be doing differently? And it probably, probably, we don't have a healthy balance there, to be honest with you. But I think, like any parent, you do whatever you can for your child to make sure that they're gonna be as successful as possible. And that's what we're doing with Emilio. You know, the other part of it is just that he's just a really fun kid to be around. . So it makes it all okay in the end.
Diana Pastora Carson:
That comes out in the film so beautifully. So what should we be teaching our students? You know, what do we, or what do we need to be doing in our schools so that the Emilios of the world can be members truly with belonging within the community?
Olivier Bernier:
I think one of the biggest things I've encountered personally is in my own life, is just this wall between people with disabilities and myself, just because I had never been around children with disabilities. And I don't know how to approach people with disabilities necessarily, or how to act normally around people with disabilities in a way. And that's something I've had to learn since Emilio was born. And making the movie was a huge step in that for me. You know, we had a crew of people with disabilities on the film set, adults, and I got to spend a lot of time. And part of that was just me, like seeing what life was gonna be like for Emilio. And that actually kind of opened up my world in many ways. So I think, you knowsorry, I forgot your question. .
Diana Pastora Carson:
What, what could we be doing in our school system that foster an inclusive mindset and that sense of belonging for all children?
Olivier Bernier:
Right. So I think a big thing is breaking down that wall and creating a bridge. So I think that happens first and foremost with adults. So I think a large part of making the film is I didn't make the film for necessarily just for parents of children with disabilities. I tried to make a film that would be engaging to the former version of myself that didn't have a child with a disability, because the truth is that inclusive education really has a ton of benefit for children that's neurotypically-developing. So I think that you know, if we could kind of build that bridge to parents, we could really see change. You know, listen, you have more supports in the class. You have different ways of teaching the same lesson plan. Visual learners learn better in this kind of setting.
Olivier Bernier:
You know, there's so many benefits for everybody. And I think that if every parent knew that they would wanna put their child in an inclusive class, I mean, who wouldn't wanna be in a class that has, you know, four or five adults in it? Right? . Yeah. So, you know, and we show that in the Henderson school. You know, the Henderson school is an interesting story because it's a school up in public school up in Boston that is fully inclusive and 40% of the children have disabilities and 20% have significant disabilities. And what's amazing about the school, one of the interesting factoids that I love to share is that the school accepts everyone with a disability that enrolls. The only waiting list they have is for neurotypically-developing children. In other words, every parent wants to get their kid in the school. Because it's been so successful.
Olivier Bernier:
And, you know, if we could do that, repeat that model across the country, it'd be amazing. I mean, they're so successful that they're in Dorchester and the area around the school, the real estate has skyrocketed because everyone wants to live near the school so that they can get their child in there . And it's, it's just you know, it's just the perfect example of what happens when adults come together and they say, Hey, let's figure this out. Everybody needs to be in the same classroom. It's a human right. Let's figure out how to do it. Let's problem solve. And they did it. And, you know, the model's there it's also happening, you know, we went to the Henderson school, but it's also happening in other schools across the country. And if we could just, you know, put a, you know, a megaphone on them and, and so that everyone can hear what they're saying, you know, then I think we could have a much better school system.
Diana Pastora Carson:
Hmm. I love that so much. Thank you. Is there anything that you haven't said that you want educators to know or understand?
Olivier Bernier:
That's a great question, as well. There's a lot of things I think, but I, you know, the most important thing is that I think school is very important, but school is also the first entrance into society for a child. And I think sometimes teachers are so focused on the lesson plan. They're so focused on, you know, in kindergarten teaching the letters and the colors and math, and that they forget that what children are really learning is how to interact and be, be around each other. And those are lessons that, you know, those soft skills are gonna follow them for the rest of their lives. And so I think, you know, if we could remind educators the importance of that, then I think we would it would maybe make, you know, the case for inclusive education a little easier.
Diana Pastora Carson:
Hmm. Beautiful. How about parents? Is there anything you haven't said that you want parents to understand that's different from what you were just saying?
Olivier Bernier:
Yeah. Well, I, I think that parents have to look at what they want for their child. I know a lot of parents, you know, they have questions about inclusive education. Hilda had questions about inclusive education. All the professionals are telling us, Hey, you know, Emilio should be in a segregated setting. He's gonna learn better there. Uwe followed our gut and we said no. And that was a process to get there, but we, we fought for what we believe in and, and we won. And you know, that, I hope that message empowers other parents to do the same thing, to not, to not give up, to, to trust what they feel is right for their child. And, you know, it's,well, actually a great story. Aiden, who's in the film,his parents fought an eight-year illegal battle, and just last week they won. They, they were
Diana Pastora Carson:
Yay! .
Olivier Bernier:
So, you know, Aiden, Aiden was 12 when they started that battle. He's 20 years old now, and he's gonna get to spend one year, but he is gonna get to graduate with his high school.
Diana Pastora Carson:
Wow.
Olivier Bernier:
That's a really empowering message and, you know, never give up.
Diana Pastora Carson:
Yeah. It's very empowering, and it's so sad that so much time and energy was wasted on that. And what could have been possible for Aiden during those eight years of the battle is the sad part to me.
Diana Pastora Carson:
If you could say, you know, let's sit fast forward to 10 years and he wants to hear about his life earlier and about his parents earlier, and some of the things that you said, and he's listening to this podcast, what would you say to Emilio?
Olivier Bernier:
I would I would say to Emilio that you're, you're worth just as much as anybody else. And, you know, don't let anyone tell you otherwise.
Diana Pastora Carson:
Great. Olivier, where can people find Forget Me Not, and where can they find you?
Olivier Bernier:
Sure. So you can visit our website, forgetmenotdocumentary.com, also fmndoc.com for short. And on there you're gonna find a bunch of resources, you know, places to start if you're looking at inclusive education or just wondering what it is. And also where the film is streaming, which is right now Amazon Tubi, soon it's gonna be on Apple iTunes and a bunch of other services. So it's actually free on Tubi. You just have to watch a little bit of advertising. And then for anyone that sees the film and would like to organize a community screening or a screening at their university or school, there's a form there that makes it really easy to do so. Because that's a large part of what we're doing. We want people to share the film. We want people to spread the message of inclusion, you know, and I think the film does that well. So you know, universities, future teachersfuture administrators, those are the people that can really have an impact now. So if you can share the film with that with them, that's great. And also sharing the film with parents that don't have someone with a disability in their lives. Uyou know, I think that a lot of impact could be had there as well.
Diana Pastora Carson:
Perfect. Perfect. Well, I know I've been sharing and will continue to share with my friends and audience. Olivier, thank you so much for your courage and for your commitment to inclusion. And thank you for joining me today. I really wish all the best to you and Emilio and your family.
Diana Pastora Carson:
Thank you for tuning into this episode of Beyond Awareness: Disability Awareness That Matters. If this was helpful to you, be sure to subscribe, rate, and review this show on Apple Podcasts, Google Podcasts, or Spotify. You can also follow me, Diana, on Instagram @DianaPastoraCarson and on Facebook at www.Facebook.com/GoBeyondAwareness. Or you can go to my website for more information at www.DianaPastoraCarson.com. My books include Beyond Awareness: Bringing Disability into Diversity Work in K-12 Schools and Communities, as well as my children's book, Ed Roberts: Champion of Disability Rights. They can both be found on Amazon. For your free Beyond Awareness resource called the "5 Keys to Going Beyond Awareness," simply go to www.GoBeyondAwareness.com/keys. This podcast transcription and podcast guest information can be found in the show notes. Intro and outro music has been provided courtesy of my son, Emmanuel Castro. Thank you again. Be well, be a lifelong learner, and let's be inclusive. See you next time.
