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Q&A with Olivier Bernier about Forget Me Not

On Thursday, March 23, 2023, we had the pleasure of speaking with Olivier Bernier, the filmmaker behind the documentary, Forget Me Not: Inclusion in the Classroom. This is a replay of the webinar where we played a 20-minute clip and then answered questions from the attendees.



In Forget Me Not, parents and filmmakers Olivier and Hilda Bernier share the personal impact of NYC’s segregated education system as they fight for their son Emilio’s right to be educated alongside his peers.


Click here to get the Forget Me Not DVD (personal use) for $10!

The offer valid is until April 15, 2023. Consider buying more than one copy and gifting a copy to a friend, school administrator, teacher, or a library.

Reminder: this DVD is only meant for personal use only. To share the film in an Educational or Community screening, find more information at www.fmndoc.com.


Audio Transcript


Tim Villegas

Since this isn't a meeting I don't think I have to let anybody in


Jessica Kidwell

They have to use the passcode though, the password.


Tim Villegas

I see people coming. Everyone who's joining right now we're going to start in a couple of minutes and just enjoy listening to I think this is Brad Meldau maybe?


All right, folks, it is three o'clock. My name is well hold on a second. Let me turn off this music.


All right, there we go. All right. Welcome, everyone. My name is Tim Villegas, I'm the director of communications for the Maryland Coalition for Inclusive Education. We're just gonna let have a few more minutes let people come in. And as they come in, if you want to just say hello in the chat, and let us know where you're watching from that would be fantastic. Just a little bit about the Maryland Coalition for inclusive education. We are a nonprofit that works with school districts on a school transformation to more inclusive practices. And so we could not think of a better partnership to showcase the documentary film Forget me not. We have a Olivier Bernier here today that is going to ask, answer some questions after the film. So we are going to show a 20 minute clip of the film. And we're going to just run that through in about just a few more minutes. And then after the film is done after that clip is done, then if you have some questions in mind, think about either writing them down or going heading and putting them into the q&a. And then we have a very special guest, Jessica Kidwell, who is the host of the Neuroversity podcast that is helping us out today. And she is going to be helping us with that. I just got a message here that the chat is disabled. So let me see if I can fix that.


Yeah, how do I do that?


Captions. Okay, well, then, if you do have questions, or if you want to say something, go ahead and put something in the q&a for now. And then maybe when we were we are watching the film, I can figure that out. Oh, yes, so introducing. So I wanted to introduce Jessica Kidwell, who is the host of neuroversity. She's gonna help us out with q&a. And I want to introduce Olivier Bernier, who is our filmmaker. So thanks again for everyone who is here attending. Maybe just a couple more minutes. I see. I'm going to say hello to some of our friends we have I see Barb Gruber. Hello. Got Beth. Bestie Hello. How are you doing? Kelly, thank you so much for being here. Hey, Nolan. Thank you. Thank you. Thank you for being here. Also, just a reminder that we do have auto caption available. So if you go to the triple dot I believe under more in your that you can enable captions. And if you have any issues with that, please let me know you can put something in the q&a or you can email me directly.


All right.


Okay, so here we're going to do I think we have enough people here. Stop sharing for a second. Olivier, did you want to set up our clip or say hello to our friends?


Olivier Bernier

Sure. Thanks, everyone for joining. I'm really excited to be able to share a clip from our film Forget me not. I believe the clip that we selected is one right at the beginning of our journey to get our son Emilio, who at the time was two years old and born with Down syndrome to try to get him included in the education system. So the film, I think, by the end of the clip, we're learning what some of the challenges will be by meeting other families that have gone through the same thing. So I hope you enjoy the clip. And if you do, check out the film, you can go to Forget me not documentary.com for for the streaming links for the full feature.


Tim Villegas

Right Thank you. All right, let's we practice this then in rehearsal. Let's let's hope that it works.


Hilda Bernier

Even though I was a special education teacher in the New York City public school system, it's completely different to be at the other side. B. Letter B. Honey bunny? As a Mom, I'm afraid that I am afraid of making the wrong choices. Are you gonna swim? I'm I'm very confused. Yes!


Olivier Bernier

Poud dog. High five. Another pound dog. Handshake. Thank you, sir.


Hilda Bernier

Yummy time honey bunny.


Olivier Bernier

I like that one.


Hilda Bernier

Emilo can I get a kiss? I love you.


Unidentified Adult

How old is he?


Olivier Bernier

He is two years and six months.


Unidentified Adult

Okay, and you're starting to work on that transition from EI.


Olivier Bernier

Exactly.


Unidentified Adult

Wonderful.


Hilda Bernier

Yeah, my, my, my main concern right now is to choose the right setting.


Unidentified Adult

There are kind of a lot of different options for preschool and specifically with Emilio because he does have the disability and you don't want to send him in to a general ed classes, if you know, you know, he's not really going to progress there. You know, meet him at his level and get him to the next level no matter where that is. You know, we wouldn't put him in integrated class if we didn't think we could really be successful there. So


you know, what is the setting? There is needs to be met, you know, maybe he'll need a special class when he is three. And that isn't fixed. It's not forever. It's always changing because they're growing. They're getting older, their needs are changing, they're getting


Hilda Bernier

I'm on the fence. What I heard is that if he gets recommended for a smaller class that we should think about it.


Kim Williams

But I mean, it's it's clear that like if you ask someone to reach beyond what they're capable of, they're accomplish those things. You know? You want to see dad for the weekend.


Wesley

Yes.


Kim Williams

Okay. Did you put on there buddy? What do you say you? Thank you, mommy,


Wesley

mommy.


Olivier Bernier

We're trying to figure out the right class setting for Emilio. How did you know what was right for Wesley?


Kim Williams

Where do you want me to start? What do you say they say, Have a good weekend. Thank you. Well, Wesley was maybe five months or six months old, we put them in a daycare center. And one day, the teacher called and asked me to come back during the lunch hour, and when I did to go straight to the basement. When I got there, I was wondering why I was in the basement. And then I started to hear the sound of a baby. And as I got closer to the sound, it was recognizable. It was recognizable because the baby was my baby. And I learned that every day that I dropped him off to daycare, beautiful daycare center, in a great Manhattan community, that they would take them out of that classroom, presumably because he was different and put them in the basement. And at that moment, I learned that my child needed to be included like every other child, because I didn't know he was different. But the world knew he was different. And I knew that I needed to live in a world that would allow him to have the same opportunities as any other child.


When I started doing research, I learned that there was a thing out there called inclusion and that I needed to get it


you go on the restaurant, I'll meet you on site go ahead. A is for Apple. B is for. C is for.


Wesley

Cat.


Kim Williams

I went and I visited the various schools. And we enrolled Wesley into PS8. Every activity that classmates did, Wesley did. And then at the end of the third grade, we learn that the principal was retiring. Someone else will become principal. Eventually they did evaluations on Wesley, without our knowledge or consent. And they recommended that he be removed from general education. We had an IEP meeting, and all the people that made the recommendation decided that they would not come to the meeting. So the principal didn't come the assistant principal didn't come. It was a roomful of people that we'd never seen before.


Olivier Bernier

It sounds like they were orchestrating


Kim Williams

They were orchestrating a removal of him. The goal was that he will be removed from General Education forever, put him self contained, where he wouldn't be around typical peers. So we had no resolve but to change his status to self contained or to homeschool. I decided to homeschool him. So I condensed from working five days a week, to one day a week without knowing if Wesley would ever see the inside of a classroom again. Whether he would ever be entitled to an inclusive education again.


Unidentified Adult

Good morning, can I help you?


Hilda Bernier

Hi, I need to make a referral. But before I decide if this is the right agency, I have a few questions for you. Please wait while we transfer your call.


Unidentified Adult

It's just now you're going from one age range to another. So early intervention is Birth to Three and it's from the Department of Health and three to five to the committee on preschool special ed, when you come to the meeting with the board of Ed, then the Board of Ed will determine the services or the school setting that the child needs. Okay, the only problem with our agency right now, we don't have any availability until February.


Hilda Bernier

I guess I will try calling a different agency. Okay.


Unidentified Adult

Please wait while we transfer your call.


Hilda Bernier

I have one more question. My husband and I are working on a documentary.


Unidentified Adult

The key you entered is invalid


Hilda Bernier

Like a little bit of a help for other parents that are going through the same process.


Unidentified Adult

Early childhood. The key you entered is invalid.


Hilda Bernier

Do you think that we could film the evaluations?


Unidentified Adult

I don't think so.


Good morning and welcome to the eighth annual World Down Syndrome Day. In 1995, the average life expectancy of someone with Down syndrome was just 25 years, less than 30 years later, this is 61. Today, we will focus on advancing the quality and substance of those lives through education.


So firstly, I'd like to introduce Thomas Heir from Harvard University Graduate School of Education. He will be speaking on inclusive education an international research summary.


Thomas Heir

Thank you for having me here. When we organize this study around the questions that people often have when you're talking about inclusive education. Number one, does it benefit or does it hurt non disabled kids who are educated in inclusive environments? And number two, does it benefit students with disabilities?


Olivier Bernier

50 years ago, you know, my son would have probably been put in an institution at birth. What were the exposes and what impact did they have?


Thomas Heir

The the most noteworthy expose of the institutions was done at Willowbrook in Staten Island. And that was done by Geraldo Rivera. I think his greatest contribution to journalism.


Geraldo Rivera

We toured building number six, the doctor had warned me that it would be bad. It was horrible.


Thomas Heir

He went in and brought guys like you have here.


Unidentified Adult

In my building, we had no staff to train them in a systematic way to use utensils to feed themselves that can be done. But what's necessary is to feed them.


Geraldo Rivera

The Willowbrook State School is its country's largest home for the mentally retarded. It's called the school. But that's more a statement of aspiration then effect. Fewer than 20% of the 5230 people who are kept here attend any kind of classes.


Thomas Heir

These exposes were on the nightly news. And there was surveys that are done at the time, the average American didn't believe that this was happening in their country. And so there was it wasn't just parents with kids with disabilities. Other people saw those and they were repulsed. And so I think that that politically helped eventually pass section 504 of the Rehab Act. That was the first big step which prohibited discrimination, and then ultimately, the federal special ed law.


President Bill Clinton

This is the tented South Lawn of the White House. Yesterday, President Clinton signed the Individuals with Disabilities Education Act.


Thomas Heir

President Clinton embraced many of the goals in the disability community, and so I was very happy to go to work for him as the Director of the Office of Special Ed Programs. My boss Judy Heumann, she had polio and was excluded from the New York City public schools when she was a child.


Judy Heumann

Disabled people were segregated, hidden away and ignored. Today, thanks to the IDA, we can see a future where no child is denied his or her civil right to obtain a quality education.


Thomas Heir

Our goal was to bring particularly people with intellectual disabilities into the mainstream of both schooling and life.


President Bill Clinton

To the 5.8 million children whose futures are in the balance. We believe in your potential. And we are going to do everything we can to help you develop it,


Thomas Heir

even though the law is very, very strong on promoting kids. being educated in integrated environments, particularly kids with intellectual disabilities, the vast majority of those kids are still segregated in the United States in special classes. And to me, that's a huge failure.


Unidentified Adult

Aiden Patrick!


Oh boy. You can bring your iPad


Aiden

Say, Hi, Tommy. Hi Tommy what's up?


Olivier Bernier

What are you working on right now?


Aiden

Tap.


Olivier Bernier

Cool. Do you like typing?


Aiden

Yeah.


Unidentified Adult

Would you like to do the next one?


Aiden

Okay.


Christian Killoran

It is my oldest is 16. Now, he gets his instruction at home. So that's unfortunately, where Aiden is now. Transitioning to elementary school was certainly a challenge. Our particular elementary school had never dealt with a child who had Down syndrome. To their credit, however, they agreed. There was some bumps along the way. But ultimately, we got him through and he became the first graduate with Down syndrome.


Olivier Bernier

Then he went to middle school


Christian Killoran

Well, no, that's where the problem arose. We were told that that'll never happen. And we said, Well, what do you mean, that'll never happen. So here's the middle school. What Westhampton wants to do is to not only completely remove Aiden and from the general education classroom, and not even allow him to have lunch with typical peers. In addition to that, they want to send him to an entirely different school district, which is over an hour away.


Olivier Bernier

So their plan is to put him on a bus one hour


Christian Killoran

At least, at least an hour away into a segregated setting. That's that that's the plan.


The child develops relationships when they're in the community. And they can later leverage those relationships when they're out of school. Because there's a familiar ally. If you move outside of a district, that child's lost, nobody in the community even knows who that child is, and never will. When West Hampton refused to enroll late and we bought a federal court action. It's bringing back bad memories. We found out that West Hampton Beach, had never provided for the post elementary education of an ultimately assessed child in its entire history. Every child is entitled to have their education in the least restrictive environment. Basically, you start with the environment that the typical child is being educated in. So a general education setting with the use of supplementary aids. But why wouldn't you want Aiden to be in a segregated setting? what's known as a special class with no typical children? If there was less students in the class with teacher to student ratios, more intensive 611-811-1211 It would seem that that's something you would want to do. But there's no study that supports placing them in a segregated setting is actually good for the child. However, there's literally hundreds of studies that support integrating children


Olivier Bernier

You want to write on that?


Sarah Joe

Hello.


Olivier Bernier

Hi, Sarah Joe.


Sarah Joe

Yes.


Olivier Bernier

Hi, this Olivier.


Sarah Joe

We do know that students have the most academic success when in the inclusive setting. So we would want him in an inclusive preschool with Gen Ed peers. I think the big thing is New York City is one of the most segregated school systems in the nation for special education. So it's going to be battling that.


Olivier Bernier

If you were to rank in New York. And in terms of segregating, where would that rank.


Sarah Joe

It'd be the very bottom. The absolute bottom, not just for students with disabilities, students of color students of low socioeconomic status. New York City is interesting because they have a completely separate district for students who have IEP s called district 75. It's a students are labeled district 75 students, students with specifically intellectual disabilities are all shipped away to the segregated spaces.


Olivier Bernier

What does a district 75 school look like?


Lori Podvesker

It's only kids with IEPs. The majority of district 75 programs are located in buildings with other schools. It is typical for kids who attend district 75 and colocated buildings to have to use separate doors than all the other students in the school. It is common not having lunch with non disabled students gym. It includes not having music class, it includes not being out on the playground. There's no signs of district 75 programs and most buildings, there's no signs of kids that they're even around.


Sarah Joe

There are these antiquated, really deep rooted beliefs that are born out of the institutional era, that these people need to be separate from us because they are different. I tried to put my mindset in the doctors and nurses who work there and think they genuinely were trying to help these people, but were misguided. And I think that's where we're at today. It seems that the folks who are forgotten about in these larger conversations of progress and equity are those with intellectual disabilities.


Lori Podvesker

It should not be okay that almost 60,000 students in New York City are in segregated settings. It still feels very much to me. Disabled Students are an invisible use the side door, we would never say that to another minority group. Why is it okay to say it to people with developmental disabilities or their families? I don't know.


Thomas Heir

If you changed the group membership to a different racial group religious group, gender, and the same practice was done. People would be very upset.


Sarah Joe

Inclusion early on almost guarantees inclusion later on, but segregation early on, almost guarantees segregation in the rest of life.


Tim Villegas

All right, folks, we are back.


So thank you, Jessica. For the reminder, if you have any questions, you can go ahead and put it in the chat. Or you can also put it into the q&a section, we finally got the chat going. So Whoo. Thanks for your help on that. Also, apologies for any of the technical difficulties on getting into the Zoom webinar. Hopefully, you were able to get in. But for those who are watching later, again, apologies, you will be able to watch this webinar on demand. And we will also have this on our YouTube channel. So, Olivier? First of all, thank you so much for making this powerful film. So impactful. And why don't we just start off with one of the questions we got from our, from our attendees. They said we would love to an update on Emilio since the film and how are you continuing to advocate for him, given the systemic problems with accepting inclusion as a best practice?


Olivier Bernier

Yeah, well, advocating is going to be a lifelong journey for us. So I think it's something we're gonna continue to do for the rest of our lives. But more importantly, I hope that we can get Emilio to advocate for himself. So we're hoping that we can lead by example, and that one day he'll be able to take the reins. Today, Emilio is fully included in kindergarten, we're happy to say we're actually now in New Jersey, Montclair, New Jersey. And so far, the his whole team has been really supportive of him being included. So that's been really great. But you know, we every year is going to be a new year. And we know that his IEP meeting comes up in May, and there's gonna be new challenges. But what's important for us is that Emilio is not segregated based on his ability that he has the same opportunity that every other child has, and that he's able to reach his full potential just like every other child.


Tim Villegas

When you were making the film and interviewing, you know, Thomas Heir and interviewing some of the advocates, you talked about research, and you talked about the outcomes for individuals with intellectual disabilities, and just their ability to learn in general education did. Did you? Like what did you learn about that? Like, is it possible for students with intellectual disabilities to learn and thrive, you know, in with grade level content?


Olivier Bernier

It absolutely is. And, you know, I think to step back for a minute, when Emilio was born, I was just completely unprepared for him because I had gone to a school that was completely segregated, and we never met anyone with a disability. So I really didn't know myself how someone with a disability could learn in the same class. And I think, you know, what I tried to do with the film is to bring people on that journey of me learning what inclusive education is and how it works. Because I think that's the most important thing we can do is build that bridge to people that maybe don't understand or, or, you know, went to a school like mine, where, you know, a teacher sat in front of a blackboard and wrote, you know, some numbers for math and hope that children wouldn't be able to understand it. Yes, a child with a disability can absolutely learn alongside all children have all different abilities. And the truth is, though, that it takes a different way of thinking, it takes a different way of teaching, and it takes a rethinking of how, you know, school is traditionally taught to the average student, there really is no an average student. And if lessons can be taught to the margins, to both people on the highest end of, you know, the IQ scale, let's say and, and people on the lower end, you know, then we can, if we can teach to the margins, people in the middle are really going to benefit.


Tim Villegas

We didn't see it in this the 20 minute clip, but you were able to visit the Henderson school in Boston. And so tell us your impressions of what a fully inclusive school, you know, looks like and, and sounds like for for those who maybe have not experienced it?


Olivier Bernier

Oh, gosh, it was our first days of filming officially for the documentary besides like, our family footage, was actually going up to Boston. So our first interview was with Thomas. And our second day was going to the Henderson school. And I gotta say, as soon as those doors open, my world changed, I had never seen anything like it. I had never seen so many people with different abilities and different disabilities, you know, in the same place and hanging out and being kids and having fun together. You know, we entered it was lunchtime, I believe we were in the cafeteria, and everyone was sitting together. And what I learned is that, you know, although the kids do see the difference is it just doesn't matter, because they're, they started going to school together in preschool. And they're just buddies. They're friends, and they learn with each other and from each other. And it's, it's really an experience that I wish I had when I was younger. And I hope that we can bring two more children as we go forward.


Tim Villegas

What about NYC? Has anything changed since the film has come out? Like with as far as the educational service delivery?


Olivier Bernier

Yeah, there has been some changes. There's been talk of making district 75 more inclusive, I think, to people who haven't seen the full film district 75. You know, as mentioned in the clip, you saw is a place that's just built on the foundation of segregation. So you know, I'm I'm of the belief that you just have to totally dismantle district 75 You know, I don't know that you can make it more inclusive because It's a segregated practice from the beginning. You know, but there are steps being taken. You know, during the previous administration, New York, they tried to get rid of G and E, which is also a form of segregation. You know, gifted and talented students should also be in the same class as everybody else, because they learn many things in those classes, not the least empathy. So, you know, I think, there, there have been movements over the years, but I haven't seen any Signet significant changes. And in fact, in 2021, we had already concluded filming, but I read a statistic that the school system in New York City had spent a billion dollars on legal legal proceedings to essentially send children to private schools that they can fit within the public school system. So that's a billion dollars that could have gone towards making a more inclusive education.


Tim Villegas

Right, right. So I know, a lot of people are going to be showing this film to educators. In fact, I just came back from a trip to some schools in the state of Washington, and one of the principals said that she showed the film to her entire staff. So with educators specifically in mind, what did you really want them to take away from the documentary?


Olivier Bernier

Well, I think, you know, this movement towards a more inclusive education system really begins with teachers. And, you know, I got to start by saying that I believe teachers are the most important people in our society, because they're creating the future of our country, and, you know, all around the world that their countries, you know, without good teaching, we don't have a future and the education system is really integral to that. So I hope that film reaches a lot of future teachers so that they can see another side of the story, the way we change things is by not doing them the same. So just because things have been done for many years in a certain way, doesn't mean that they should be done that way in the future. And I hope that when future teachers see that film, they at least think about, including children with disabilities, and I hope that those teachers one day become administrators and principals and have the opportunity to make their schools more inclusive as well.


Tim Villegas

Oh, how's the have an update on on Hilda, as she goes through a transformation? You know, especially after you know Boston, I know that the family did, but you know, how is she doing in all this right now?


Olivier Bernier

Yeah, well, Hilda came from a professional background. And when we went into the first IEP process, you know, she had a lot of faith in the in the educators and administrators that we were going to be working with. And it took her a minute to come around to the idea that maybe these people didn't necessarily have the best intentions for Emilio. Today, you know, Hilda and I advocate for Emilio side by side, and, you know, I can't feel more lucky to have a wife like Hilda, because, you know, when I'm feeling weak, she picks me up vice versa. So, you know, we're in this together. And I hope Emilio sees that. And, you know, one day, as I mentioned earlier, it takes takes cues from that.


Tim Villegas

Where, what's kind of next for Forget Me Not, I know that right now the film is streaming on Tubi so everyone can, you know, after this webinar, go on Tubi, and I know that's for free? Are you going to be doing any more in person screenings or kind of what what's the what's the future with that?


Olivier Bernier

Yeah, we've been getting a lot of requests for community screenings. And that's a really important thing for us. Because, you know, we when we set out to make the film, you know, we didn't make it. For us. We made it for all the children like Emilio and, you know, we really believe that by putting our most vulnerable moments on camera, people would one see a good film, but also be inspired to maybe do the same and share their stories. So I think that at the very least, I hope that people continue to share the film amongst each other. Because I really feel that the power of storytelling can help change the narrative around inclusive education. So we have community screenings, we hope that more universities You know, buy the educational license for the film so they can share it to their classes. And also, in addition to to be it's currently on Amazon, and it's for rental, and it's also on Vimeo for rental. And I just learned that very soon it's going to be on iTunes, and Vudu and a couple other services. And then, yeah, we continue to do screenings at universities and various events. So, you know, you can always follow us on Facebook and Instagram, and, you know, check out what's next.


Tim Villegas

Or you could just buy the film too, you know, for multiple, or multiple watchings. Alright, so make sure if you have any questions or comments, go ahead and put it in the chat, or in the q&a. We're just going to keep going with some additional questions. So again, in the film, and so I have the benefit of watching the film. So I'm gonna reference a few things that we didn't see in the clips, but everyone can go ahead and and watch it later in their preferred streaming platform, but you know, the, the footage that you have at the beginning of the film, is of Emilio's birth. And so I'm sure that you weren't thinking about making a documentary, you know, when you were filming, like, when the when the doctor shares that, that Emilio has some signs of Down syndrome? Or, you know, so walk us through that process? Because you you do have that footage.


Olivier Bernier

Yeah, well, like any other father. You know, I filmed the pregnancy, this pregnancy, it was a first child on the way, maybe like a father on steroids or something because I'm also a filmmaker. So I just always had a camera in my hand. Some people think that I started filming the documentary before Amelia was born. That's just because I get to have fancy cameras in my hand all the time. But the the moment that Amelia was born, I actually did not know I was recording that had put the camera down. There was a lot of commotion in the room. A lot of NICU doctors had come in just because of complications during the birthing process. And I thought I had stopped recording. And the doctor came up to us and delivered the news about 10 minutes after Emilio was born that he showed five markers of Down syndrome. And that's the very moment that Emilio that. Then I learned that Emilio had Down syndrome. And you know, a few minutes later, I looked down at the camera and I saw the red light blinking that I had been recording. And it took about a year to look at that footage. You know, just to see if I had it. And then it took me another year after that to actually watch it. Because that was a very difficult moment for us. And in large part just because at that moment, it was doom and gloom because I did not know what Down Syndrome meant for Emilio. I didn't, I had no idea. And that's I think, in large part just because I hadn't been exposed to people with Down syndrome.


Tim Villegas

What would have been helpful in that moment? Like if, you know, if you were giving advice to to doctors or health professionals on on explaining what Down syndrome is like, how would you have wanted to be told?


Olivier Bernier

That's a great question. And you know, in some ways, I don't know that there's any great way to receive that news being the person that I was then because I just did not fully understand what Down syndrome was. But I would say that, you know, the doctor apologizing for Emilio having Down syndrome was kind of a maybe not the best delivery at the moment, but I can put myself in the shoes of the doctor, maybe not having encountered that situation before and being inexperienced in it. But um, you know, so I certainly don't fault the doctor. But I do wish that you know, I guess that very night so the doctor put a level of uncertainty in our heads about Amelio having Down syndrome. And we spent a day kind of like wondering, does he really have Down syndrome? And it wasn't until about nine o'clock at night that the head geneticists of NYU hospital came to us. And he had been in a conference all day and he came after the conference because someone had asked him to come and speak with us. And he told us us that pretty immediately that Emilio had Down syndrome. And that put us at ease immediately because it was like, Okay, we don't have to guess anymore. He has Down syndrome. And this is, this is what it is. But he also said something that resonates with me today. And he said that, you know, he was talking about himself. And when he was born, his parents didn't know if he would end up on the incarcerated or if he would be the head geneticists of NYU. And the truth is that we never know what challenges our children are gonna face. And that Emilio has his set of challenges, but he's just another kid. And he told us to love him and treat him like every other child we would have had. So that was the best advice. So it was quite a tumultuous, 24 hours, but it turned around quickly.


Tim Villegas

All right, any other questions as we are close to wrapping up here?


So another thing that comes to mind when I'm thinking of the film is when the districts, the district representatives are explaining IQ, and and showing you a bell curve, and kind of saying, well, here's typical development, and, you know, Amelia, somewhere, like off off the page, or whatever. So, I'm kind of relating this back to, you know, the doctor tells you that Amelia has Down syndrome, and you're like, I'm not sure what that means, right. But the same thing happens in our schools. And try it in professionals are trying to explain to parents you know, the, the prognosis for learning for your child. So walk me through, as you were trying to initially get Emilio included, like, like, what did you run up against? And were? Were the expectations just really loaded? Were they trying to set the bar really low for like, what you were expecting to get out of school?


Olivier Bernier

I would say absolutely. I mean, what we were up against, it felt like a brick wall. You know, we we walked in there thinking we were gonna have a collaborative discussion about what Emilio's future could look like and how we can best achieve that. And what we realized really quickly was that his IEP had already been written, his goals had already been set with them having without them having ever met Emilio. You know, Amelia went through a battery of tests of, and you know, where he spends half an hour stacking blocks or doing, you know, whatever they do it two and a half years old. And that's not a great way to evaluate a whole child. Maybe that tells them how well they are stacking blocks, but it doesn't really tell you what that child can achieve in life. You know, and I think that in New York City, especially, it's almost impossible to get out of a segregated setting once you're put in that segregated setting. So to me, they were writing Emilio's future in that moment. And, you know, as you can see in the film, we weren't having it. So, you know, we learned pretty quickly that just the power of ag advocacy, and that we would have to step up and become Emilio's fiercest advocates, but we really did that with the help of Sarah Joe, who's been by our side, since Emilio has been going to school.


Tim Villegas

Absolutely. Sara Jo. We're so thankful for you and your advocacy. So, you know, ultimately you ended up moving not everyone can do that, right? Not everyone can, can pick up and move and go to a different state or a different even a different school district in within the same state. So, do you have any advice for families who are kind of stuck and have to make a choice on whether to continue to fight and advocate you know where they are, or maybe just are resigned to like, well, this is just the way our life is gonna be?


Olivier Bernier

Yeah, well, when we decided to move it wasn't purely just because of the New York City public school system. We actually had a second child Camilla. And you know, we needed more space and I think we're just looking for different places to live other than Brooklyn. That said, you know, when I, when I first made the film, and we're still living in Brooklyn, you know, people ask me like, Well, why don't you just go to Boston? You know, and the question seemed crazy to me like, Why? Why would I leave New York to go to Boston? Nothing against Boston? But like, why would I have to leave where I live, in order to get to go to a different public school like this should be available somewhere in New York City, there's a million kids in the school system here. So the idea that people have to pick up and move to get what they need for their child is horrible. In my opinion. We've lucked out, we've we had a really good opportunity to move and we took it. But not everybody has that opportunity. And, you know, it reminds me, a lot of people ask me, What can we do? What laws can we pass, you know, so that this doesn't happen. And although laws are really important, don't get me wrong. The problem with laws is that to defend them, it takes a lot of money and a lot of time. So there's, you know, as you see with Aiden story in the film, and there's countless other stories where children are still fighting legal battles to be included in their local community schools, and not allowed to go to school during that time in an inclusive setting. And you know, who loses the children, they lose yours. Aiden is still not in an inclusive setting. And that it's been, you know, I want to say seven years now. And his parents have been fighting and just doing everything they can, at great personal expense, to try to get what Aiden deserves and as a human. And the truth is that, you know, I think we need to look at it as a civil rights issue, not just a technical education issue. You know, if we realize that people with disabilities are like everybody else, and they deserve the same rights as everybody else, then I think we change the Congress, the narrative around the conversation. So you know, laws are important, but it's not the only thing. And, you know, last eight, I guess, finally answer your question. You know, if, if you feel stuck in a situation, you know, we were there too. And the most important thing to know is that so many other people are going through the same thing, or film focuses on Emilio just because he's our son and I had a camera in my hand. But Emilio represents a million of other millions of other children. And the truth is, is that if you keep fighting and you get your child included, what you're doing is opening the door for many other children behind them. And create an example because your child being included in an inclusive classroom, there's maybe 20 other children in that classroom that will have the experience of going to school with a child with a disability the experience that I didn't have, and that led me to be unprepared for my own son.


Tim Villegas

Well, as we wrap up any other final questions for Olivier, about the film about Emilio about inclusive schools. Olivia, do you want to just I guess, plug the film but just one more time let people know where they can follow you you the film and get updates about Emilio and, and stuff like that?


Olivier Bernier

Absolutely. You can follow us on Instagram, I Forget Me Not documentary on Facebook, I Forget Me Not documentary. Our website is FMLN doc.com. Also, Forget Me Not documentary.com They'll take you to the same place. And there you can see all the places that film streaming, you can learn about some events. And we also have a lot of resources on the site about inclusive education, namely a paper that kind of kicked off my research written by Tom hare for Alana, which is actually the grantor of the film, and you know, our distributors working tirelessly cinema libre films to get the film out there. And, you know, we hope that you we all have a part to play in this, you know, and we hope that by sharing the film and sharing more stories around inclusion, we can kind of break out of just the disabilities community and show that everyone benefits from inclusive education. So you know, please share the film. It's really, really important to us.


Tim Villegas

Fantastic. Oh, so we I do have one more question before we sign off. So did you feel that the IQ and other testing was a disadvantage to Emilio's inclusion?


Olivier Bernier

Absolutely. You know, and this is where advocacy comes in or having an advocate is so helpful, because Sara Jo reminded us that any kind of testing is just really to get the services that Emilio needs or to come up with a strategy to help familia best it shouldn't be deciding placement. You know, and secondly, like, I never took an IQ test, I still have in my age, and, you know, why should children with disabilities have to take an IQ test? It's just very strange to me. You know, I think Emilio in the eyes of the New York City public school system, Emilio's future was already written because he was born with Down syndrome. And that's really dangerous. Because if we continue to do the way things have always been done, we're doomed to repeat the same mistakes. And that's why we spend a lot of time talking about the institutions, you know, a lot of what we're seeing now are really loud echoes leftover from the institutional era, and eugenics. And how do we break out of that is by doing things differently, so I hope that, you know, everybody raises their voice and just reminds their local schools that they should be doing things differently.


Tim Villegas

Well, thank you so much to Olivier Bernier. And then I just want to acknowledge how many people not only in the chat, but as we were leading up to the webinar, how many people had already seen the film, and how it hit impacted them in such a powerful way. So thank you so much for, you know, opening up your life and showing it to everyone. That can't be an easy thing to do. But I think it's made, it's an important contribution to the conversation towards inclusive education. Also, today on the think inclusive podcast, it dropped today in your feeds, if you are following the podcast, I have a additional conversation with Olivier and Hilda Bernier about the film. We did talk about some of the same questions, but we didn't not for not all of them. So if you're interested in that, you can go ahead and check that out at think inclusive.us/podcast. Another, thank you to Jessica Kidwell, for being my right hand person during the q&a. Thank you so much, make sure to check out her podcast, Neuroversity. And I think that might be all the things that we have. Unless, unless you wanted to have a thanks. I don't know.


Olivier Bernier

Yeah, I first you know, I just want to acknowledge you and Jessica, as well. Thank you for putting this together. And thank you for everyone that joined you know, I hope we get to continue to connect in the future. And I also just wanted to thank the the grantor of that film, Alana, who's actually from Brazil and they also have the Alana foundation in the US and they do so much good work around inclusion and rights of children. Also our distributors cinema libre and Rhoda six films, and all the people that helped to make the film and, of course, all the people in the film that shared their stories because we weren't the only ones. So that's it.


Tim Villegas

All right, absolutely. Okay, I'm going to end the webinar. And I think I'm gonna try this. Here we go.


Transcribed by https://otter.ai


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