Transcript
Hello and welcome to the If We Knew Then podcast. I’m Stephen Saux.
And I’m Lori Saux.
Today is a really exciting interview.
So exciting. We are joined by Edie Casagrande and Matt MacNeil from the Canadian Down Syndrome Society. The Canadian Down Syndrome Society has this amazing initiative called Project Understood. Project Understood is a collaboration between The Canadian Down Syndrome Society and Google AI. And they’re creating a database that can help train Google speech recognition technology, to better understand people with Down syndrome. And what I want to do is I want to give a just a huge kudos to Google for being the front runner on this. Because when you have a major corporation, that steps up and makes you part of the conversation, then you become part of the conversation. And I think that’s what we want, we want to be heard, we want our children to be heard, we want our community to be heard. And they are literally making it possible for us to be heard and understood. It’s its inclusion, at its its finest point. It’s it’s what we fight for, in society, in education. And now Google has teamed up with the Canadian Down Syndrome Society to say, we’re going to give you that support. So you are part of the conversation. And it’s been long awaited, and should be celebrated. And so thank you, Google, because I hope many follow in your footsteps. An actual part of our speech therapy training that we do with Liam, you know, we try to incorporate fun little games, is we work with our home virtual assistant, and work with Liam to do commands and when it actually understands him, or he gets it to work at we always celebrate it. So we’re so we’re looking forward to this technology. And we can’t wait to learn more about it. You know, speech recognition is something I use on a daily basis in my life with texting or even email. And it’s really nice to think that this is something that our kids will be able to use in the future. Both of our kids absolutely.
Okay, so let’s get started. And Matt, welcome to the podcast.
Thanks for having us.
Maybe we could talk a little bit first, if you could just introduce yourselves. Can we start with you, Edie? If you introduce yourself, tell us a little bit about how you got involved in in this project? Yeah. Hi, my name is Ed Casa Grande. I’m the chair of the board for the Canadian downstream society. I’ve been on the board for just over five years and joined the board just after the birth of my daughter, Emma, who’s now six, Emma has Down syndrome along and I have two other boys, Peter, who’s eight, Tommy who’s four, I have a marketing background and felt I could bring some of that communications and marketing background to the board, or to the key and downstream society, in terms of raising awareness on some key issues and opportunities and hopefully change some public perception. Thank you. And Matt. Last name is Matt McNeil, and author of Canadian downstream shyy. I’m also the south IPC committee chair in the court data, we help Canadian downstream say, staff with value. Yeah, as self advocates, you know, Matt and his team provide, obviously great insights for us, especially when we’re trying to create awareness campaigns and really understanding real life challenges and opportunities that someone with Down syndrome would face. And while we have, you know, many people with Down syndrome in our lives, it’s great to get that firsthand information from self advocate. So Matt is the chair of the VAT a group, which is voices at the table for advocacy into a self advocate group at the Canadian Down Syndrome Society. And I know you’ve both done so much for the Canadian Down Syndrome Society. But today we’ll talk specifically about Project understood and maybe you can tell us a little bit about that project. Yeah, so for the past four years, they came down some society puts out a major awareness campaign during the first week in November and that coincides with Canadian down
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syndrome week, we start the process on trying to tackle some, you know, real situations, opportunities, real life scenarios, you know, we’ve focused in the past in terms of handling some of the myths when it comes to Down syndrome, you know, providing resources, you know, speaking to some of the limitations to, to support people down syndrome, so we, you know, we kind of, we tend to tackle different issues over the years. So, early in 2019, we sat down, you know, and and started discussing, you know, what should we be focusing on? So, we reached out to the VAT a group of voices at the table for advocacy, and, you know, we just had dialogue to understand, you know, what, what should we be focusing on, what are some real life opportunities, challenges that you’re going through, and what came up in those discussions a lot was accessibility, you know, the, the frustrations of not being able to do something, because of XY and Z. And while we continue to have those discussions, you know, technology kept coming up, and how some of the challenges around technology were, you know, it’s meant to make things easier. But in fact, for some, it makes things a little bit harder. You know, we have a great communications partner, FCB. We have offices around the world, but we deal with the FCB, Canada team, who’s been working with us over the years to come up with these projects. So when we, when we landed on accessibility, and then you know, through the discussions, technology, and then it evolved to voice technology. And with someone with different speech patterns, there are even more challenges, like, you know, we at a typical person experiences challenges with with voice technology, and when you’re speaking to your, whatever device you have, and, you know, sometimes it comes back saying something totally different than what you’ve what you’ve said. So, you know, just picture that happening more often with someone with Down syndrome. So, you know, we were in this area for voice technology. So then, you know, the team kind of went off and kind of did some research, and came across an initiative that Google AI is doing called Project Euphonia, where, you know, they were looking at speech impairments, you know, different speech patterns with the ALS community. And, you know, they were just at the, you know, looking at their technology with those speech patterns. So we approached them with the idea of, you know, bringing down syndrome as part of the scope of this project. And from there, you know, that that sparked the discussions and let you know, brought us to this campaign where we were recruiting people with Down syndrome to log into Project understood.ca, to provide voice samples in order to, you know, strengthen the voice technology with Google. And you were talking about coming up with the idea during Canadian Down Syndrome week. When is that, by the way? Yeah, so it happens every year, November 1. So basically, for the for the first week in November, is Canadian Down Syndrome week. So we like to, we typically put on a, a larger awareness campaign to coincide with that. So we launched Project understood
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November 1 2019. That’s amazing. And you had mentioned fcb, I just want to clarify what that was. CB is a is a large advertising communications firm. They have various offices throughout the world. We connected with them in Toronto, well, five years ago, given that lag in my background in marketing, communications, and, you know, felt that there was a great opportunity to, again, raise awareness on some key issues and opportunities as it relates to Down syndrome. And, you know, with the, with the hopes of changing overall public perception. So yeah, FCB has been a great partner throughout this whole process. Well, it’s a brilliant idea. I mean, it’s a it’s, it’s just wonderful. I wonder, did you guys fly to California and get a tour of some things, how to how to things look? Yeah. Well, Matt, what did you What were some of your impressions when we went to California? Love? Yeah. That’s how I looked at Google HQ.
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I’m speechless. Yeah. But they’re, you know, it was great to see such an inviting environment, you know, much warmer weather than what we’re used to that time of year. But it was just great to speak to
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some of the folks that are that are involved in this project, because because prior to that, all the conversations were obviously over the phone. And, you know, we started going down the path of doing some tests to see whether or not some from some voice samples from people with Down syndrome would be able to strengthen the technology and have that, you know, the voice technology learned from that
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So we did a small test and Matt was part of the group that did the test prior to going to California. And then when we went to California, we did find out that okay, we can do this. There is learning when we’re able to provide voice samples from people with Down syndrome. And Matt did some more recordings down there, met the team and really kind of put the path in place to begin recruiting people for this project. And for this AI to work for Project understood to really come into fruition, we need donated voices, correct? Yeah. To date, we have just over 600 voices of people donated. Matt, can you speak to some of the phrases that you had to had to say as part of the project, so far remembered why they are like a yo, yo, today? Yeah, you’re right. There was a whole bunch of sentences that people with Down syndrome would would record. In fact, one, I guess, I guess, to complete your, the project for one person, that it’s 1700 phrases. So that’s a lot of phrases that can be completed, obviously, over multiple sittings. So having 600 people, you know, participate, where it’s a big time commitment where you have to record 1700 phrases is a big undertaking, we’re just thrilled. The the success to date. So, you know, it was really much a in awareness campaign in terms of, you know, participate in this project, so that we can get ahead of the curve in terms of trying to shape voice technology, because, you know, as we all know, voice will replace the keyboard when it comes to triggering the internet or technology or what have you. So, instead of playing catch up, or instead of not being able to take advantage of the of that technology, we felt that this is great that we can help shape the technology so that it’s usable to our community.
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Well, that is a big time commitment. But I think of it as like when you want to record your thumbprint on an iPhone, you have to do it several times and move your thumb around. And so this gets let’s the AI really get a real sample of your voice and your different phrases. There’s so many different phrases and sounds in in the human voice. Through this project. What have you seen what have you learned from this project just personally, for me, first and foremost, the dependence of technology not only for a typical person, but with someone with Down syndrome. If you look at someone like Matt, he relies on his phone and the internet for scheduling work and appointments and communicating. So if a person like Matt isn’t, doesn’t have the accessibility to use the technology, then it’s very difficult. So you know, technology is supposed to be an equalizer. So the inputs to that technology needs to be workable for everyone. So just I’ve learned that because we rely on technology so much that those who can’t use it the same as some others, you really see the gap there. Well, I can understand that as a dad, that what I want for my child’s future. And, and Matt, I see this as being something that is going to be able to be used for you as well, I’m assuming that there’s really no timeline of this. But depending on how many people we can get to donate their voices, it’s going to dictate how long it takes for this technology to come out. Yeah, and you know, we’re just at the, you know, this is, I think there’s lots to go when it comes to voice technology, because you know, we’re just speaking English language, right? So there’s all different languages out there, different speech patterns within communities. So like, there’s, there’s lots to do still, when it comes to voice technology in general. And again, we’re just speaking in relation to Google, but there are many other platforms out there. So it’s not something that you know, it’s gonna be ready six months from now. It’s just part of the long process. And, you know, we’re just thrilled to be a part of it, this stage of the process. And we all want that tech to work better for everyone. And I think you’re getting a lot of input from typical voices into AI all the time. So this is fantastic to have a select group like, like a group that we’re so passionate about to be able to input those voices not is it presently just English that’s being recorded. Yeah, right now it’s English speaking, and 18 years and older. That’s criteria. Got it. Now, I’ll put links in the show notes of everything that people would need to donate their voice, but maybe you could just give the details of how someone that’s interested in participate in this project could go ahead and do it. Yeah. So you know, you would go to our website, Project understood.ca. There you’ll see a very clear description of the project and you know, the steps involved in the project. Step one is clicking the donate your voice button to come
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With an interest warm, you’ll get an email from Google where you start recording some preliminary phrases. And then they take those preliminary phrases to see whether or not the technology is able to learn from that. And if so, then you’re getting the full login, and you’re recording the the phrases. Matt, can you tell us a little bit about your experience when you when you logged in and recorded the phrases, anything you wanted to share with that? Game? beginning when I started doing my recording? I didn’t read it all before I recorded it, because I know what to say what not to say. And how do you make her my voice is clear on that? Mic breaking? Pick up my voice? So yeah, yeah, we’ve heard some instances where, you know, someone would have someone to helping them in terms of perhaps if they weren’t able to, to hear or read the phrase, someone to read it to them, and then they would be repeated read after? Yep. So you know, it’s, it’s flexible that way. But like I said, it’s, it’s a, it’s a longer process in terms of, you know, 1700 phrases is a lot? Well, how long did it take you again, Matt, to do the same to me almost two and a half days, and you were going like, all out all the time with it. You know, we’ve heard some instances where, you know, they’ve spread it out over a week or two. So, you know, it’s, you can pick up where you left off and come back and forth as much as you want. But Project understood.ca is the first step is the information that Google’s receiving? Are they able to apply that as they go? Or is it kind of Upon completion, that they’ll be able to create a system? It’s apply as you go. So it’s just you know, the technology is always learning, it learns, learns best through repetition, and, and quantity. So, yeah, there isn’t like a set number that we’re waiting to, to, to hit before we, you know, then teach the technology to, to recognize all that it’s just, it’s ongoing. Since you’ve begun this project. Is there anything that you’ve learned that has changed what you think about or how you’re creating the accessibility? Yeah, well, I guess when it comes to voice technology, right now, it’s all about the fun stuff, right? Accessing music, you know, movies, buy stuff, you know, check the weather, you know, it’s the fun entertaining stuff. But when you look at the, at the future, and what what, what can happen, you know, you could, you know, picture booking appointments, or when there’s driverless cars out there, you know, call them speaking into your voice assistant, say, hey, whoever, you know, pick me up to take me to my job for shopping like this is so much there. And then there’s a two way communication aspect where there’s discussions and people, numerous TED talks on this, where they talk about vocal biomarkers where the technology is able to understand through the tone of your voice or how your voice sounds, whether or not you know, you’re ill so just picture you know, waking up. I go Golan, oh, hey, Matt. Hey, Ed, you sound stuffy today, would you like to call a dog like, you can see we’re can go and, and I guess another thing is, as you know, as I think about the future with this, you know, is the is companionship. So I think of my daughter, and when I hear of stories from other people who have Down syndrome, school, very inclusive watch activities, friends, lots of fun, lots of interactions and, and participation. But then as, as someone graduates from school, you know, things start to taper off a bit, and especially if, you know, your friends have moved on to school, and you’re not, you’re not taking you’re not going to school, or you’re not working, or whatever. So there’s there tends to be a dip when it comes to companionship. So not to say that this would replace humans. But if it becomes more of a two way communication, technology, and it won’t be one way and you know, I think that would contribute to flooding against someone feeling like they’re isolated, or lonely. So not to say that would replace human voices. But there would be that two way communication that I think would be highly beneficial, and maybe particularly in those Canadian winters.
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Can I ask you how old are you, Matt? I am Friday right now. And so my question for you with technology is, obviously there’s been great leaps and bounds in technology over the last 30 years. How has technology changed your life and your experiences with technology?
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Are you with me that I used to do a lot. So mostly I changed my life because it really helped me look for different recipes on cooking and stuff. So they told me I can be independent, and you’re helped me to learn that I can use than typing then talking. Yeah. And just Further to that, you know, having hung around with Matt and, and lots of people with Down syndrome in their late teens and early 20s, you know, the reliance on their phone is the same as as a typical person. So it’s staying connected, it’s it’s looking for
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quick text to add it to my phone to do a quick kick to add, instead of me just doing a big long text by hand, I just do my voice instead. Yeah, which is, you know, the same as any other typical person would want to communicate short to the point using text. So I don’t see a difference. And there’s just that reliance, of technology to stay connected with friends and families as a key driver for this.
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Well, I guess the reason why I was so interested in what technology is and how they’ve changed for you is because our son, Liam was 10 years old. And so our experience as parents have, you know, we’ve fought for Liam’s education, we’re constantly advocating for equality, mostly right now, because he’s 10, with his education. And one of the things that has always brought me hope was technology and how it’s changing to equalize the playing field for my son, and the hope that what’s out there, like Ed, you had mentioned the self driving cars, that brings me joy to think about so I wanted to try to understand or have a picture of how that’s changed for you, just in your journey over the last 30 years. Yeah. I mean, I guess definitely, for my activities for the day, have you keep track on things that and make forget, it really helped a lot? Since I use my phone a lot. All at school? So yeah. And how would you feel if you know, you didn’t have your phone? Or the the internet connection was down? Popular?
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Technology? Well, that’s true for so many of us, right? I mean, it’s the world. To my point, it’s the same as everybody. No, I love that. I love that it’s opening so many opportunities. Yeah, I just see it as the new trigger. Like I said, it replaces the keyboard. So you know, when you always when you hear about the Internet of Things where you know, your refrigerator was gonna be hooked up to the internet, or whatever, it’s just, it just seems like, you know, as scary as technology may seem, when you think about the future, I’m very hopeful that technology will allow my daughter to show all her abilities and her to be a, a fully contributing member of society and the way she wants it to be so and that’s at the end of the day. That’s what we all want. We want to be contributors to society. And, you know, if there is something that is able to level the playing field, then I’m all for it. Absolutely. It’s it really does bring me so much hope with the technology. And even just the changes that Liam has experienced, even with this, homeschooling, I find that he’s progressing more because he can go online. And it you know, today, he signed up for summer school, and the Down Syndrome didn’t even come into play until he logged in, and the teacher saw them. So it eliminated all of the other misconceptions that people might have. And they’re want to put him in a certain box. Nobody, nobody knew. So he just jumped right in with everybody else, which I feel is how it should be. Yeah, I think you’re gonna we’re gonna find, you know, given the current situation with COVID-19 is that we’re going to have a new normal, and I think even a greater reliance on technology in order to stay connected and to learn and to entertain and communicate. So technology isn’t going anywhere. And voice will be, in my opinion, the dominant trigger to that technology. Well, one of the first videos I saw after learn about Project understood was a video that you and Matt did, which was a virtual presentation to the UN, which was pretty fascinating. And exciting. Like I bet for you guys. Specifically, Matt, can you tell me about that experience
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was really good. During a v2 I UA I went
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Yeah, before to the UN in New York, okay, I was find you in a different way cuz it’s online
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recording with add a message that reset gave a good impact through this project. Yeah, it was unfortunate that we weren’t able to go there in person to present this project. But we were glad that we were able to participate via video and yell as Matt said, he was there a few years back in person actually communicating our first campaign. So it was just great to promote this campaign, this project on a global scale, you know, via United Nation. So it’s, you know, it’s a personal thrill. For me, obviously, it’s a second time around for Matt. So it’s no big deal. I would just say, right, Matt, been there done?
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Well, we had kind of touched on it before about perceptions of Down syndrome, what particularly do you think of as perceptions you’d like to change about Down syndrome? Well, I think, you know, first and foremost, it’s about people first. So you know, when I think of my daughter, or Matt, Down syndrome is a part of them, but it doesn’t define who my daughter is, or who Matt is. So it’s really, you know, at a bare at the bare minimum is like, it’s a person, we’re all people were people first. And there are lots of different people out there with lots of different abilities. So before
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having my daughter and, you know, didn’t know much about Down syndrome. But you know, the things that I probably thought about when I thought about Down syndrome were the, the limitations or what a person down syndrome can’t do.
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Since having my daughter, and obviously, you know, meeting lots of people with Down syndrome, like Matt and seeing
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their abilities, has changed my perception that need to focus on the abilities, and there’s lots of abilities, and it’s just a matter of raising the bar and giving them the opportunity to reach those abilities. Sometimes people with Down syndrome need a little bit of help on certain things, just like anyone else. But you know, with the right resources and support, you know, they can conquer many those challenges that they’re often faced with and maybe weren’t able to overcome in the past. So that’s what, you know, this whole journey has taught me in terms of, of, you know, people first and, you know, not only within the Down Syndrome Community, it’s, it’s everyone. And you know, what we’re going what we’re seeing right now, what we’re going through right now, in terms of
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what’s happening
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across North America, in terms of some of the protests, echoes that, you know, we’re all people, we all should be treated equally with dignity, respect. And we need to be aware that now there isn’t one typical person, there are lots of different people in this world.
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I love it. Yeah, it’s an amazing time, because I see true change. And this is this is part of it this project. Matt, do you have similar thoughts? And in, in what perceptions you may be breaking through with this project? And just with your life? Yeah.
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I know that we all might be different. We are committed different. I’m always saying every time because it is making a difference. We are people first, like Ed said,
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I want people to see that. Things that we can do and see that we can’t do.
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And most the thing that we can’t do, we can do.
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Man, how often are people surprised when they find out that you live on your own? But it was quite a bad parent? Apparently.
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Yeah, I pick up through burial. How often are people surprised when they find out that you know, you’ve held the same job for 12 years now? Yep. Yeah, I don’t know if you saw one of the videos for punching in instead. But Matt rides is his bike to work to check his schedule into work. And he was also riding one of the Google bikes at at the Google campus. And that surprised a lot of people. Again, it’s just it’s just changing the perceptions of
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stuff we can do and certainly we can train people the experience of what we can do. The turning point for me after having my daughter was going so every year or in the past, they can hand down some stuff
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society does a conference every year, where people from all over Canada to come to the conference for over a weekend. And that was my first conference, I just joined the board. And I was actually working the Canadian dumped society, Booth. Like there’s a number of booths kind of like a trade show sell format. And I was sitting down with Nick, who’s one of the members of the data team. And at the time, he would have been early 20s. And, you know, this was really the first time that I actually sat down and spoke with someone with Down syndrome, who was who’s an adult. And you know, this, like my daughter, I think she would have been like four months old or five months old. And that I’ll never forget that conversation. Because what I learned from that conversation, you know, after talking to Nick for Oren hours, he wants the same things as anybody else. We, you know, we talked about music, you know, we talked about girls, and, you know, you talked about wanting to move out and get married and have a girlfriend and, and, you know, getting close to a girl and all those kind of things. And it was like, one that was a typical conversation with I could have had with any 22 year old or however old he was there. So, to me that really just opened opened my mind and say, You know what?
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Similar to a typical person, Nick, in that case, wants has the same hopes, wants and dreams
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as anyone else. And you know, even spending a lot of time with Matt over the past year, with Project understood, you know, it was very same same feeling in terms of, you know, Matt wants a paycheck, he wants to beat Texas. He wants to live on his own, he wants relationships. It’s the same as anybody else. Matt, first of all, I I love as a parent, and I’m going to come more away from the technology side as the parent side of of our podcast, because I have a lot of questions myself whenever I’m watching, just with all the changes that are going on. And I just I want to say that I love that you’re out there. And people are seeing, as you said, Matt has a job. And he’s had it for 12 years, and Matt rides his bike to work. And I, you know, some of my frustration as a parent sometimes will be that this is a surprise to people. And that can be I can I can’t imagine your experience. Matt, if every time I did something, people were blown away by it. So that’s my question. If you know if you could talk a little bit more on your experience, even when you were younger and went to school, because I know things have changed since since you were you know, in elementary school or middle school or high school. And maybe you could talk a little bit about that, because I personally find it very interesting. Yeah. So now I remember that thing that I did when I was in elementary school, and that the glasses 20. You know, the kid,
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stuff that I learned that I didn’t want now is tough match during the awesome stuff.
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We always came, I get my mom and my stepdad and them taught me how to dock nice. And pneumatic. Nobody knew what that meant to where I did the dock nice in class, and they saw me when I was doing, they look at me saying, What the heck are you doing? I said, I’m doing dock now. That’s the end that they told me that, can you teach us that? At that point, they were so supplied that there was a way to do maths in that way. So I made great friends during that and the other friends now come up to me and said that they could change my life, you really helped me a lot in your kid. Don’t change yourself. And so I come from now to tell them that do not ask me who people are and stuff like that we were kids.
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Yeah, that’s a great example where, you know, Matt just needed to be taught a little bit differently.
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To you know, to adapt
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to the way Matt learns, and of course, you know, he was able to learn so, it’s, it’s having that awareness that, you know, as I mentioned, you know, people, some people may need need to be taught in a different manner, using a different resource or more visuals than words and just making up examples, but it’s, it’s, we need to kind of think beyond there’s only one way of doing things and speaking in school, like even Matt, he went to college and he lived consonance So, again, when I when I found that out, you know, as he mentioned, Laurie it’s like wow, you know, when I hear things like that, it’s like okay, well am I done
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or, maybe my daughter can hear that, maybe my daughter can, can live on her own and, and, and go up on her leg to check work, work schedule and, and go to school. So it’s just very,
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very comforting to see that. And that’s, you know, one of the roles of the Vatican II and they spoke about before Romans it’s on, it’s to give inspiration to, especially those new parents who, you know, they’re, they’re going through lots in their head in terms of what the future will hold and what, you know, what will, you know, what, what, what’s going to come out of all this and seeing those real life examples, it’s very motivating. And, again, going back to that first conference that I went to, my daughter was four months old. At the time, we only had two kids, but seeing families where, you know, you know, that had people with Down Syndrome and typical people and interacting and siblings and siblings, every, it’s all the same, like, you know, whether whether you have Down syndrome or not, you’re going to be happy said, you know, fight with your brother and sister, you’re gonna want to watch something on TV. So seeing that interaction was like, Okay, it’s, we’re going to be just like any other family. And
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we’ll turn it okay. So it just, but we need to continue to raise awareness on the abilities and what someone down syndrome can do, versus what they can’t do. So that we were ones to help raise the bar and achieve those those larger milestones, because it’s not that long ago, where the bar was very, very low. So we all can appreciate that bar has risen, and there’s lots of opportunity for him to go even higher. I think what is so great about seeing these examples, because I know that when my son was born, there weren’t a lot of examples. I don’t even think no, I’ll take that back. There were really no examples out there. Because I went, I did research and there was nothing very hopeful. And I think what having these examples to where more people see the capabilities and the changes, I think it’s more of a change of perception, then then the abilities because I believe that the abilities were always there, it’s just how they were limited in society. I think that takes away a lot of the fear and, and what I experienced as a new parent was not only just the fear of being a new parent, like I was with my daughter, but there was so much unknown, and the only known was stuff that really kind of put fear in, in our hearts, because it was limits. And I and I love that. You know, that’s one thing I said to my husband, when Liam was born is just like, Sophia will go to college if she chooses Liam’s gonna go to college, if that’s what he wants to do. But it wasn’t a norm that was out there. It was something that you weren’t given that you it was almost like I was dumping my foot in the ground. And it shouldn’t be that way. No, even for me, when when Laurie would say that I went, Oh, okay. I mean, but did I really believe it? Not initially, because I was brought up to think of someone with Down syndrome as limited. I wasn’t, Laurie was not. So she really has brought this great positive attitude that is only going to, you know, if we told our typical daughter that you’re not going to college, because she couldn’t if because she’d be unable to do it, then right there, I’m eliminated her and she may not go to college for that very reason. So having these positive attitudes and telling everyone what they can do, just like how you said, Matt, what can you do? Not what you can’t do? That’s going to really make everybody rise to that, that higher bar that you talked about it? Yeah, I think it just goes back to and again, this applies to everyone is just, you know, not shutting the door on people and creating those opportunities where doors are open, so that, you know someone has the opportunity to, to see what’s on that, you know, on the other side of the door, they’re, you know, going back to, you know, to think about the future all the time, I’m hopeful as well, you know, and I, you know, Liam, you said Leah was 10 years old? Yes. Yeah. So my daughter, Emma is six. So they’re gonna go through school, you know, for the most part, very inclusive classrooms and, and they’re gonna be surrounded by peers and their classmates and friends who, you know, I’m hopeful that they see Emma as Emma and not you know, I’m on the Down Syndrome kid. But both classmates, friends who are very young right now. They’re our future leaders. They’re the future bosses. They’re the future HR departments and I’m hopeful that to them isn’t it will not be a great leap. I’m hoping it happens much sooner than than that. But it’s, it’s not a big leap to to be diverse and to be inclusive, you know,
40:00
beyond school, especially when it comes to work, because I like, you know, there’s lots of opportunity there. I think, you know, today a lot of companies feel that yes, you know, we need diversity, not only from, you know, physical,
40:15
you know, just all walks of life. But I think a lot of people are held up on the how to do it, you know, what supports are in place to get that done. So I’m hopeful that we will overcome that. But, you know, that’s a huge area that, you know, I’d like to like to see some, some progress and Aidan agreed. And I think that’s the, that’s the whole advocacy for inclusion is because it does start at the foundation of having, having society just be inclusive. So everything is accepted. Just you’re just accepted. You’re just, it’s just there. And let’s start from that even playing field as we are who we are. And everybody is different. And everyone has something to contribute. Right. Matt, can I ask you when you were in school, did you attend an inclusive classroom? In high school? Yes, many times I took everyday life math. And that taught me a lot of stuff that I didn’t know how I do now. But I just stuff that I didn’t know I can do before. When they did, I loved it. How did you feel going into the inclusive classroom? Or how were you accepted then? What was that experience? Maybe it was my staff to help when they knew knew me. Maybe that’s my mother reasons why but but then sports was was when I was driving because I want me to change. So I started to work for steering Council. And I did one little word that made every thought who would doubt a microphone and I said my speech I said I might be different but I could make a difference. And that’s it. I knew it. Everybody in the credit score said wow, that’s Matthew that I made my day may I may just doing council got rid
42:11
of them seeing the Hi my ability and see the postman for
42:16
Hope you don’t mind if I steal that motto? I might be different, but I can make a difference. That’s fantastic. Really concrete that one. Trademark it make a t shirt right up, man. What What college did you go to?
42:31
Attending college in Peterborough? Peterborough, Ontario, which is about two hours away from two hours east of Toronto, Ontario. And what did you study in college? So, in that class, they had a crash course fee ice club integrated through coop education. So I was going full recommend you’re so wack alright. Yeah. And that’s, like, you know, Matt’s college like that’s from his house. That’d be like four hours away. So we’re not talking like, right around the corner from from the parents house where they can check on that he was. He was far away. And he got it done. Living on campus right there on campus going in the bathroom. Can I ask a little bit about your experience going into going into the classroom? How you been college? Yeah, in college. I’ll let you talk. what that experience was like when you first went by First Ranger class
43:34
I didn’t know anybody
43:38
eyes ringing as a student and sit down listening to the teacher. And to making me talk to me I talked to them
43:47
signed up for like Best Buddies and somebody was my best buddy, be even talk to you. And they told me what friends doc do and be in the right path of who I talked to get help for homework and stuff. What was the what was the reception? Were teachers surprised? Or were some of your classmates surprised that you were there or about your abilities? Yeah, exactly. Some of the classes I took. That was talking about gang to further my classmates. And further I was trying to turn myself that can talk to the classmates and turn or what definitely really is. And I was happy that I gave them good information why Dan Pham was in fact, a friend who kind of helped me with the project. And I was happy because it really turned out the great project in him today.
44:46
Man has a very engaging personality as you can probably tell and, and, you know, he’s easy to talk with he you know, he he can joke around like the best of them. Like if he’s a big sports fan. You know, don’t get started all the time.
45:00
Want to label his hockey team? So like, you know, it’s easy to have a conversation with Matt. So I can only have wasn’t there when that went to college, but I can only assume, based on how I know what I know about men and how I, I know that, that, you know, he would have no problem talking to people interacting and making lots of friends. So I can, you know, when he when he talks about breaking down some barriers, I can see that most barriers going down very early in his when he went to college, and you know, they saw Madison versus something else. I took a pijac give, I was asking him to do a essay. So I said to myself, I would like to compare downstream stereotypes, and Aboriginal stereotypes. And now we’re into a good essay, and I turned in, the chief is like, amazing, a five, because of that essay, turn that into a blog for the community.
46:02
Oh, that’s fantastic. I’d love to get a link to your blog I took I would put that on on the show notes. If anyone’s read that and going back to Project understood, this technology will help people blog as well. Of course, we always like to ask a question to our guests. The podcast is called if we knew then and it’s, it’s from a parent’s perspective, usually, just usually, it’s, it’s, I wouldn’t have worried so much in the past if I had known things. And that’s probably universal in any, in any capacity of any subject that you could talk about, and experience you’re gonna have. But maybe I can direct this to Edie. First, would you have an if you knew then statement to make? Yeah, a good, good question.
46:42
If I knew then, well,
46:45
things are gonna be okay. In that fun, funny how, at the beginning of a journey, you have all these questions in the unknown. And it’s just human behavior, possibly. And also, just information, we have the unknowns, sometimes so scary. And when you have, sometimes negative input or negative information that you get to your mind even expands that and makes it where you’re really fearful. And I believe that all this positive, positive things that we’re putting out that the project is putting out is really going to change the initial thoughts for parents, and particularly when they find out they’re going to have a child with Down syndrome. Yeah. And in fact, you know, that was really the first campaign we did three or four years ago called Down Syndrome answers where, you know, I can go through my experience, which is very similar with a lot of people’s you know, once you find out whether, you know, prenatal or at birth, you know, it’s it hit you like a brick wall, because you didn’t expect it. And then what do you do? You go online, and you search for answers, and you get a wide range of information. And you know, some of it, a lot of it focuses on the limitations versus the potential. And so we created a campaign called Down Syndrome answers where we actually looked at and one of the most asked questions on Google, when it comes to Down syndrome, you know, how long does the person with Down syndrome lens? Can someone downs and go ride a bike, drank alcohol, a number of questions. And what we did is have people with Down syndrome record answers to those questions. So not only we’re trying to, you know, squash, some myths and stereotypes, but seeing hearing the answer sent by someone with Down syndrome, obviously puts a human aspect to it. And, you know, going back to what I said, you know, things will be okay, seeing in that context, you know, it’s not a cold piece of paper or a cold piece of text that you’re reading and trying to understand, well, how does this apply to me? Seeing someone giving you a heartfelt response makes a big difference and how you’re getting that information. So that’s, that’s another campaign, you can check on a lot of these campaigns you can find on the Canadian Down syndrome, Society website, CD ss.ca. I’ll look that up. And if if I if I do have a problem getting it out, I’ll make sure I get the link from you. Because that’s that’s definitely something we’d love to promote. Matt, do you have an if you knew then
49:24
were there were there times. Matt, were you maybe when you were younger? You felt that? Oh, I can’t do this. Very good question. Public speaking was the toughest thing I ever done. When I kept going back there, I didn’t know how to do public speaking now. Forgive me right now. So thinking public speaking, how it’s me now and not back. If I could take that, then that how I can speak clearly enough to darky people.
49:56
And you were you were a little nervous when you first started public speaking. Yeah.
50:00
As I think everyone is, that’s one of the scariest things you can do, you know, listed listed under like being a fighter pilot trying to land a plane on an aircraft carrier. That’s gonna be really nerve wracking. Yep. What helps you with your public speaking technology, the ones who will help you with my speaking to the FBI, now I’m mumbling, but try to figure that good enough to answer the questions and speed up my ankles. So I think that helped me to calm down and think before I say stuff. And I think the more the more speaking engagements you have, Matt, the better you get at it. So, you know, with your, with your work with data, and you know, you’re oftentimes, even, you know, going back to some of those conferences, you’re, you’re up on the stage with a microphone or you’re, you’re leading a discussion with your peers. So I think you’ve because you’ve had so many opportunities to speak, you know, you’re much better at it, just like anyone else. It’s all about repetition. Matt, can I ask you, you know, Liam, he’s cognitively there as far as speaking but his expressive language is comes in a little bit slower. And we work on that, and we assist him with speech. As a parent talking to you who you speak very eloquently. And I love I love to listen to you talk. Can you tell me as far as advice, something that helped you with speaking? Is there an app? Or is there a book? Or is there something that you use that that helps you to develop your speech? Can you help me with this, my mind really does know yourself. So it will take time, but I believe that it will take patients really does keep what you’re doing. And I felt that at the end of the year, go in the future. I felt like be a great person to talk to you. Was it frustrating for you as your speech was coming in? Yeah. And what what helped with the frustration just as as, you know, just as someone who’s I’m supporting my son to develop his speech, what helped you with that frustration? They are
52:18
all helped me with my speech. And co worker, like, he helped me talk
52:24
to me knew what I’m talking about and got finished my second.
52:30
I always say that the oil is put out there for speaking and add Zoid when you always have me sometime in the mouth, okay said
52:40
Yeah, Matt’s not afraid to speak his line. So we just have to give people like Matt, the opportunity to speak and to be heard and to stop and listen, and you know, not cutting off or not trying to say what you think Matt wants to say, Matt knows what he wants to say. Let him say it. So it’s just
53:04
you can always say it again.
53:07
Well, we’re glad we were able to bring you guys together. And have you guys talk to each other a little bit. I know, you guys don’t live next door to each other, obviously. Yeah, we’re about an hour and a half away.
53:19
Project and it’s a campaign I was very adamant. You know, we needed math to be a big part of this. And I’m just very happy the way everything turned out. And your journey with your daughter over the last six years. Is there anything that you’d like to share or whether it be personal or just, you know, I’m very, very, very hopeful for the future like I’ve seen how my daughter thrives in school and in social settings and you know, the thing that she does like, you know, I don’t see Emma and someone down syndrome I just see outlines Emma, and you know, I’m,
53:59
I’m not, why, you know, there are things that I still think about about the future. I’m not I’m not fearful
54:08
Well, I have I’ve just enjoyed speaking to the both of you for so many reasons. I love what you’re doing with Project understood.
54:18
I think it was like a year and a half ago, Stephen was talking about technology and AI and that was a big concern because as as they were talking about, you know, getting voices into technology. He brought up What about AI advocacy for Down syndrome is what I wrote down in my in my goals was That was because I’m kind of a tech guy. And so I said that there needs to be a representation for Down syndrome in AI. So we were so excited when we heard about your project because we know the advances of technology and and we know how technology opens up so many possibilities.
54:58
So on that level
55:00
With your project, it’s been great. And I love putting the information out there because I think it’s a beacon of hope. And I think that the more hope we can get to other parents, and, you know, adults living with Down Syndrome and kids in school with Down’s that, that’s hope that’s, you know, that there’s, there’s people on your side, and we know what we can do. And, and I love it, I love that the word is being put out there. And then on a personal level, to hear and your experience as another parent and your honesty, I appreciate it.
55:36
Because being a parent, even just seeing you, you know, I’m four years down the line from you, I love, I always love to hear how things changed. And when you’re talking about having an inclusive classroom as a given, that makes me so happy, because Liam’s inclusive classroom was not a given, and we had to fight really hard to make that happen. So I love that now, four years later, that’s just something that happens. And Matt, Matthew, thank you so much for sharing, because you give me so much hope as for my son, to know, you know that you’re out there and you’re doing it. And what needs to happen is everybody needs to see and know that you’re out there, and you’re doing it, and everybody can be out there doing it. And, and it’s having the support. And so I appreciate. I appreciate you sharing your stories, because as a parent, it just, it makes me happy. Really does.
And you know, vehicles, like your podcasts allows Matt to tell his story. And people hear Matt’s story. So we’re all in this together.
Yeah. And Matt, thank you for joining us. It’s been a pleasure talking to with you today.
Thank you very much for having us part of your podcast.
Thanks for having us.
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If We Knew Then - A Down Syndrome Advocacy Podcast 