Forget Me Not intimately documents a family’s fight to have their son with Down syndrome included in the country’s most segregated school system, the New York City public school system. In this week's episode we speak to parents and filmmakers Olivier and Hilda Bernier.
New York City is the most segregated school system in the country for students with disabilities. The documentary "Forget Me Not" shines a light on this system and the battles many parents fight to get an inclusive education for their children. The film, released in 2021, follows parents and filmmakers Olivier and Hilda Bernier after their son, Emilio, is diagnosed with Down syndrome and they find themeslves fighting for his right to be educated alongside his peers. The documentary shows the impact of New York City’s segregated education system and recounts the harmful legacy of institutionalization, but also highlights models of inclusive education.
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Hello, and welcome to All Things Disability, a podcast from Northeast Arc. I'm Jo Ann Simons, the president and CEO of the Northeast Arc. In this week's episode, we'll be having an important conversation about the challenges parents still face in pursuing an inclusive education for their children.
New York City is interesting because they have a completely separate district for students who have IEPs called District 75. And so students are labeled District 75 students, students with specifically intellectual disabilities are all shipped away to these segregated spaces.
That's a clip from the documentary, Forget Me Not the. Film follows parents and filmmakers, Olivia and Hilda Bernier, as they fight for their son's Emilio's right to be educated alongside his peers. Documentary shows the impact of New York City's segregated education system and recounts the harmful legacy of institutionalization, but also highlights models of inclusive education elsewhere.
Since its release, Forget Me Not has been nominated and featured in film festivals around the country, and won the grand jury prize at the 2022 Slamdance Film Festival. Today I'm thrilled to be joined by Olivia and Hilda, who directed and participated in this film. Thank you for joining me today.
More than 40 years ago, I fought for an inclusive education for my son after he was born with Down syndrome. So it's disturbing and frustrating to see the fight and the struggles that you're still having for the opportunities that Jonathan had.
Thanks for having us.
Thank you for having us.
Great. Well, we can just get into it. The film begins in 2016 when your son Emilio is born and diagnosed with Down syndrome. I'd love for you to start by just telling us a little bit about Emilio. I can tell our listeners that he is handsome.
Emilio is an amazing six-year-old boy. He was diagnosed with Down syndrome at birth. And he's a very smart little guy. He has a smile that can brighten the whole room. And he has a really big heart. Right now he is participating on an inclusive classroom, which is wonderful, and he's learning so much from his peers, and his friends, and his teachers. So we are very, very proud of everything he does and the way he's just bursting through, it's wonderful.
It sounds like he is smashing some barriers. We'd love to hear that. At what point did you decide that you wanted to make a film about your experiences.
Well, when Emilio was born, it definitely took us by surprise, his diagnosis took us by surprise. And I realized very quickly that I was completely unprepared to raise the child with Down syndrome because I had never spent time with anybody who had Down syndrome at that point. And when I started reflecting back on my own life, I realized that I never really had the opportunity because in the school I went to, they were segregated from us.
I went to a really large high school, probably about 3,000 students. And it's hard to believe that there was no one with a significant disability in the school, but we never saw them. So it quickly became apparent that I wanted to use my tools as a filmmaker to explore what the world could look like for Emilio as he grows up and film some of that journey.
Well, I hope that our listeners will find an opportunity to see Forget Me Not because I found it both, as I said, disturbing, but also inspiring. One of the points that you make so clearly in the film is how overwhelming the IEP process. And for those people who don't know, IEP is an individualized education plan that every child with a disability in the United States receives.
The process can be overwhelming for families. What did you learn from your experiences that might be helpful to other families?
Well, what didn't we learn from the experience? For myself, it was completely new to me. Hilda had sat on the other side of the table quite a bit. But going to an IEP process, I didn't know if it would feel like a courtroom, or what it would feel like, really. But what I learned pretty quickly is that, it's a really important step in a child's life because their future trajectory is really being decided at that moment, as far as what their education outcome will be.
In New York, at least, it's almost impossible to get out of a segregated setting once you're put in a segregated setting. And for someone with a significant disability like Emilio, it's very unlikely that he would ever be put in a inclusive setting if he had been put in a segregated setting in that moment.
So we knew pretty quickly that we wanted to draw a line in the sand, but we thought that we were the parents and we knew Emilio best, and we could go into this meeting and just explain who Emilio is, how he is-- he was actually in the meeting room, and that they would understand our perspective of why we wanted him in an inclusive setting.
And just to backtrack a little bit, I was under the impression that inclusion was just the norm at this point. I did not know that segregation could be automatic for someone like Emilio. So going into that meeting, we just went with that highest hopes. We didn't bring an advocate with us. We just thought we had all the tools we needed. And what we quickly found out was, that was completely wrong because it's a very emotional process. It's very hard to keep a cool head, to say the least.
And it's also hard to hear certain things about your child, certain viewpoints that you don't agree with that are based on tests that were done. Maybe an evaluator spent an hour with Emilio, and they were deciding his school setting based on that. And then the last thing is just the-- what I learned from the first IEP meeting was just the amount of excuses they use to try to segregate children. It felt almost like going to a used car lot and a salesman is selling me a bad car.
They took out a graph, and they showed me that Emilio didn't even fit on the bell curve, and that he would never be able to succeed in class. They used examples-- he was 2 and 1/2 at the time, and they used examples that he wouldn't be able to succeed because he had never been in a classroom setting before, to which I asked, what other 2 and 1/2 year old has been in a classroom setting before?
So we quickly learned that advocates are valuable and very important to the process, which is unfortunate because it shouldn't be that way, but they are really valuable. And our advocate Sarah Jo has helped us tremendously over the years.
And through the process, the IEP process, she's really showed us that it can be a collaborative process. It's just that you have to start from the same base understanding that every child deserves to be in a general education classroom, and it's about finding out how you can make that work for them.
Yeah. I used to hate the IEP meetings because they always started off by telling you what your child couldn't do, and I would often ask, can we start with what he can do? I know what he can't do, but you don't know what he can do.
And I loved the fact that how you always focused on the positive, and even in the film, being able to see in the short period of time that we were able to see his growth, the tremendous gains that he was making in just such a short period of time. And the access to the general education. I could spend hours telling you what my son has learned because he had access to the general education that he never would have had access to in a segregated environment.
And the other pieces of it is what Emilio and what Jonathan has taught other people by being in that environment, and it can be life changing for his peers as well. But the other part that was really frustrating for me was because Hilda brings a unique perspective. Because here you are, a special education teacher, and you're now stuck in this vortex of a system that doesn't even recognize the very things that they're supposed to be promoting, which is the education of all children.
But did you think your experience helped at all? Because I saw you as a parent in that film more than I saw you as a special education teacher.
Yes. So I knew the process, and I understood where the-- the data that they collected during the evaluations was driving their recommendations and their decisions. But it is part of the idea that states that, the child has to be in a general education setting first, and then you start making interventions and more targeted programs if necessary.
So to see that they were trying to box him into a self-contained classroom right off the bat without even trying general education first was very upsetting because he wasn't-- from their perspective, he didn't even deserve the chance to be on a general regular preschool class. So it was very upsetting, dispiriting because you start thinking, wow, this is what it's going to look like every year.
From my vantage point when I first started going to these IEP meetings, I was trying to give everybody the-- not the benefit of the doubt, but I always try to think that people have your child's best interest to take into account. But there are systems in place that, unfortunately, are not set to support the children the way they should be helped.
So as a teacher, I could see their point, but as a mother, I just could not wrap my head around the fact that they were not giving him a fair shot at preschool.
See I couldn't even give them the benefit of the doubt as special educators because we have a system that has demonstrated so clearly that children with intellectual disabilities do better when they have access to the regular curriculum. But as you were talking, it reminded me when my son was about two years old and everybody's sort of telling us what he can and can't do.
And my father-- God bless his soul, said, you guys are all putting limits on him. I have built a mountain for Jonathan and I to climb together. And if we get halfway up and we have to lower the mountain, we'll do it, but I'm not going to lower the mountain until we start climbing.
And it reminds me that that's the philosophy that we expect from our special educators and bureaucrats, is that, we're going to set the standard so high, yeah. And then if we have to adjust it, we might adjust it as we would for any child. But you don't say to any kindergartener, we're going to go put you here because you're wearing a red dress today, so you're not going to learn your ABCs.
Anyway, moving on a little bit. One of the things I kept thinking about was, I wanted to say to you and shout into the film, why don't you just move to a new district, or get out of New York, or go to another state where inclusive education would be easier? Was there ever a point where you thought, we're not going to do this anymore, we're just going to move?
Well, I mean, the sad truth of it is that, there's a lot of families that become refugees of their school districts in these cases. But the fact is that, you shouldn't have to move in order to find a school setting for your child. And ultimately, we did move during the pandemic, partially related to Emilio, but also, we had another child on the way, and we wanted to move out of the city.
But I think-- there was a point when I was looking at how much houses cost in Boston, let's put it that way.
[LAUGHTER]
Well, there are other districts in Massachusetts, they're very inclusive. So we'd still welcome you hear at any point. In fact, families often are calling, when they're moving to Massachusetts, saying, where should we live? And it's hard for me to actually just pick one or two districts because we've come so far. And it doesn't mean that families don't have, sometimes, a struggle. But once a family usually reminds the district about the law, the family, the school really understands that the opportunity to be in an inclusive environment really is where we lead off with.
But I wanted to ask you-- the film ends in that frustrating IEP meeting, which I loved because they had left the microphone on, and you were able to record, recorded administrator being less than forthcoming to you about the call that she made. But EMILIO did end up in a more inclusive situation. Can you describe what happened when the film ended?
Yeah. So we ended up going to mediation, which we couldn't film because we had to sign a lot of NDAs. But the short of it is that, they gave them a shot in an inclusive setting. At the same time, though, that was the pandemic. And I think families all across the country learned what segregation is and what it does to a child because every child was segregated at home for a good year, year and a half, depending on where you were.
So I think that there was a lot of things going on at that time, and we decided to move out of the city during the pandemic, as our family was expanding. And we found a place that Emilio is thriving in right now, as Hilda mentioned earlier. And we found a school district that, so far-- fingers crossed, because as we mentioned earlier, every year is a new year, but so far, they've been willing to work with us and finding solutions so that Emilio can access the education in a general education setting.
So far, things have been great. But in New York, they were giving them a trial period, I guess, is the easiest way to say it. And it wasn't a guarantee, and it wasn't for a full year. And it wasn't very positive, and I had to beg. I think in New York, what you have is a school district that's the largest in the nation. It's a big Machine, and it has a lot of leftover gears and cogs from this institutional era that make it turn.
And it's hard for people to wrap their heads around, how can a child with a disability succeed in the New York City public education system? So I hope the film-- when people see the film, they realize that what they're doing and how they are affecting a child-- because Emilio is just one of hundreds of thousands of children that go through this every year in New York City.
So I hope the film makes an impact there. And it already has because I know some of the-- in Staten Island, for example, the special education administrators have shared the film and had screenings of the film, and had a lot of follow up questions and were deeply moved by it.
well, it is very moving. Did you ever hear back from the two administrators that were conducting the IEP meetings, who I had to keep from wanting to scream at?
We did not hear back from them. We were waiting, and we did share the film. We let them know the film was coming out. But we didn't want to target any one person. Unfortunately, that administrator is the bad person in the film, the antagonist, but the truth is that, no one gets into special education to hurt children.
No one gets into special education because they mean wrong. So we didn't want to just target one person, we just wanted to show this as an example of what's happening citywide
Well, it's a system. But the system only changes when we have brave and powerful people who are courageous to fight both within and externally, and that's, I think, what to me was so sad, is, there isn't-- you did a piece in the film where commissioner of education is talking about inclusion and the inclusive of children, and then in fact, the practice doesn't get translated.
And I wonder whether or not in New York, whether part of this challenges is that, you have such a proliferation of private schools, where people of wealth can exit the system, including kids with disabilities, where we don't have this-- yes, we have private schools, but we don't have the extraordinary machine that exists in New York City that, I think, also hinders more advocacy, system wide advocacy.
Anyway, it's-- as I said, I was moved by it. I know that people listening will be moved by it. And while it really highlights the gaps in New York's highly segregated education system, and more inclusive educations like the Henderson school here in Massachusetts, or the College of New Jersey, what stood out when you both visited these inclusive spaces? And I have to love the interaction you had, Hilda, with the students. And I could see how moved you were about what you were seeing and the opportunities that you saw there for Emilio.
For me visiting the Henderson school was so enlightening because I have never seen inclusion done in that magnitude. You had children with Down syndrome. You had children in wheelchairs. You had children with autism, neurotypical children that were coexisting with everybody, and helping, and playing, and-- it was such a wonderful thing to see and how the professionals in the school, meaning the adults, the therapists, the teachers, the administrators, they are all on the same page when it comes to what it has to get done to educate all children.
Because in reality, all children have different ways to learn. So it was very interesting to see how they cater to all the strengths and the weaknesses of every student, and how they are bringing out the best out of everybody. You had children with limited verbal ability that had communication devices. There were signs all over the school with picture cards, where child would, especially, point out to say, I want to go outside, I want to use the bathroom.
That stuff was all over the place. And I'm thinking there, how wonderful this is, how certain simple things that can be done everywhere.
As you speak-- yeah. As you speak, I'm also wondering whether or not this says something about our higher education system, the New York State special education colleges not teaching, giving the students the tools for them to be able to go and to be successful in an inclusive classroom. Just a thought whether or not that they're not being led by Tom here and some of the folks that really have been progressive.
One of the points that you make in the film is that, inclusion for children with disabilities is often a bellwether for other marginalized groups. And in your process of making the film, did you get the sense that these groups are interested in partnering with the disability community to fight for segregated education because sometimes in other areas, I feel we're fighting alone with the diversity, equity, and inclusion conversations that are happening all around the country?
I've had to fight for people to even imagine that people with disabilities, or the disability movement, belongs at the table. And then you don't even get a voice because nobody wants to talk about broadening the table to have a seat for us. And I wondered whether or not you might have found a different experience.
Yeah, I'm very new to this. I didn't really spend much time thinking about disabilities before Emilio was born, and that's unfortunate. We have so many conversations about race, about equity for women, and it's all so important. But the conversation about intellectual disabilities is very mute in the country, and it's sad to me. But the truth is that-- as you said, the point we make in the film is that, if you can include a child with an intellectual disability, you can really include anyone, and it's about a mindset.
And people have a hard time understanding how someone with an intellectual disability can learn in the same class as, say, a gifted and talented student. But I would argue it's better for both. They learn from each other and with each other. So I think that, in an ideal world, everyone would group together and say, we just have to make schools inclusive of everyone. But the truth is that, as humans, we're very tribal. So I don't know how far that'll get.
I will say, though, that, within the disabilities community, even it's so fragmented, you have groups of autism advocates, groups for Down syndrome, groups for this, groups for that. And I think that, really, everybody needs to get together and not talk about equity for just one group of students, but for all students.
Absolutely. Right. I agree. I don't know if I've shared this story that you might have heard, but it really always reminds me of why access to general education is so important. My son had gone also to religious school and learned about the Holocaust and other kinds of things. And on a trip when he was in eighth grade, he went to Washington D.C. And when he came back, the teacher said to me, I don't know what Jonathan learned on this trip, but whatever it was, it couldn't be more than he taught us.
And I said, what was that? And he said, we were at an exhibit at the Holocaust museum where they talk about Gypsies, and homosexuals, and Catholic clergy, who were also murdered by the Nazis. And Jonathan raised his hand and he said, and they killed kids like me. And people don't know what to say. And then I realized, that's what inclusion is about. And Jonathan became their teacher.
And there's another reason for our children to be here. It's not only because they're wonderful family members, but they're also here to teach us that we have to do better. And I am so thrilled that you are coming up behind me to continue this incredible journey, where I know that's only going to get better and better for you and for Emilio.
And I don't know if he has a brother or sister now, but that in your expanding family, that you will find that he will just continue to bring you joy and-- well, the film is so powerful, and I'm going to ask you what's next for you and-- both as a filmmaker, and maybe how you're going to harness this to your newfound energy to promote advocacy.
Well, I've had the fortune of learning so much throughout this process. And I'm learning every day. And with our son as he grows older, we're learning about him. But I think he's teaching me more than he's learning because it's just opened my entire world. And when I look at it, what I know now about society and how I think about other people is really formulated from things that Emilio taught me just by being himself.
And the one thing I want to focus on, really, for the rest of my life is to make sure that people have that same opportunity to learn from people like Emilio. So what that looks like today is promoting the film and making sure that the film is seen by as many people as possible in schools. I really think the film can have a big impact with future educators because those educators will be running the schools one day. And it's the mindset.
Just showing what things are like on the other side, I think, can just open people up. So I hope the film has an impact there. And we're hosting screenings, and we hope that people reach out to us that want to host screenings. There's been quite a good traction of people saying, I want to have a screening with 10 people. Can we do it? And we have a place on our website that they can go sign up and we facilitate.
Well, tell us what that website is.
The website Is forgetmenotdocumentary.com, and you can go there, and you can find the streaming links to the film. You can buy DVDs. There's educational DVDs for schools. And there's also, as I said, a place to sign up to host screenings. So we really want to facilitate that. And with the educational DVD, there's question guides and different things for classrooms.
Well, we have our own theater, so we'll definitely be coordinating a screening and making sure that the educators in our area and the connections we have with the special education schools get to see it. It just might mean that they are not going to want to move to New York City to be educators, but hopefully, we'll find somebody that's going to crack that system.
I want to thank you, both of you, for joining us today. This has been a really exciting conversation. To learn more about Forget Me Not, you can visit forgetmenotdocumentary.com. And we'll have a link on our site to show notes and you'll also have a link to the film's trailer, and I encourage all of you to watch it, you will be changed.
We want to thank PBD TV for providing our wonderful recording space. And All Things Disability is made possible through the financial support of the Changing Lives fund which was created through a gift from Steven Rosenthal. To learn more about Northeast Arc and to find past episodes of this podcast, please visit any-arc.org.
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