15. Project Understood – The Canadian Down Syndrome Society

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 Ed Casagrande and Matt McNeil 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 creating a database that can help train Google speech recognition technology to better understand people with Down Syndrome.

And what I wanna do is I want to give just 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 inclusion at its its finest points. 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 gonna 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, we always celebrate. So we’re so we’re looking forward to this technology and we can’t wait to learn more about.

Speech recognition is something I use on a daily basis in my life with texting or even email. 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. A

Absolutely!

Okay now for a quick shout out to Kristen Halpen who is the marketing communications manager at CDSS and she was so helpful in coordinating and her communication was was wonderful, but she was so helpful in coordinating the Skype interview today.

Okay so let’s get started. Ed 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 Ed? If you introduce yourself and tell us a little bit about how you got involved in in this project.

Yeah, hi my name is Ed Casagrande, I’m the chair of the board of the Canadian Down Syndrome Society. I’ve been on the board for just over five years and joined the board just after the birth of my daughter Emma. Emma is now six and has Down Syndrome and I have two other boys Peters and Tommy who’s 4. I have a marketing background so I could bring some of that communications and marketing background to the CDSS board. In terms of raising awareness on some key issues and opportunities and hopefully change some public perception.

Thank you and Matt.

M name is Matt MacNeil also from the Canadian Down Syndrome Society. I’m also go %HESITATION south I think she committee chair it also court data he helps create downstream value of our stock value group yes self advocates you know Matt and his team provide obviously great insights for us especially when we’re trying to create an awareness campaigns and really understanding real life’s challenges and opportunities %HESITATION that someone with down syndrome would face and while we have you know many people downstairs in our lives it’s great to get that first hand information from self advocate so Matt is the chair of the vada group which is %HESITATION voices at the table for advocacy interest 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 maybe can tell us a little bit about that project yeah so for the past four years they came down from society puts on him %HESITATION major awareness campaign during the first week in November and that coincides with Canadian down syndrome week we start the process in trying to tackle some you know real situations opportunities real life scenarios you know we focused in the past in terms of handling some of the miss when it comes to down syndrome %HESITATION you know providing resources %HESITATION you know speaking to some of the %HESITATION the limitations to to support free what down since we’ve been we kind of we do intend to tackle different issues over the years so early in twenty nineteen we sat down you know and and sort of discussing you know what should we be focusing on so we reached out to the valley groups a voice at the table for advocacy and you know we just had dialogue to understand you know what what should we be focusing on what some real life opportunities challenges that they’re going through and what came up in those discussions a lot was accessibility you know the the frustrations of not be able to do something %HESITATION because of X. Y. and Z. and while we continue to have those discussions you know technology kept coming up and how some of the challenges around technology where you know it’s meant to to make things easier but in fact for some it makes things a little bit harder you know we have a a great communications partner at C. B. %HESITATION have offices around the world but we we deal with the FCT Canada %HESITATION team who’s been working with us over the years the company’s projects so when we when we landed on accessibility and then you know through the discussions technology and then it evolved to a voice technology and was someone with different speech patterns there are even more challenges like you know we had a typical person experiences challenges 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 %HESITATION what you said so you know just picture that happening more often with someone with down syndrome so you know we are in this area for voice technology so then you know the team kind of one off and kind of did some research and came across an initiative that Google AI is doing call prosecute formula where you know they were looking at speech impairments %HESITATION you know different speech patterns with the ale us community and you know they’re just at the you know looking at their technology with all speech patterns we approach them with the idea of %HESITATION you know bringing down syndrome is part of the the scope of this project and from there you know that that sparked the discussions and and and let you know promises campaign where we were recruiting people with down syndrome to log into a project understood dot CA to provide voice samples in order to strengthen the voice technology %HESITATION with Google and so you were talking about coming up with the idea during Canadian down syndrome week one is that by the way yeah so it happens every year November first so basically for the first the first week in November is %HESITATION 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 %HESITATION November first twenty nineteen that’s amazing do you and you had mentioned F. C. B. I just want to clarify what what that was sensibly is a is a large advertising communications firm %HESITATION their various offices throughout the world we connected with them and intron toll well five years ago given that the lagging my background is in marketing communications and %HESITATION you know felt that you know there’s 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 yes C. B. isn’t a great partner throughout this whole process what a brilliant idea I mean it’s it’s it’s just wonderful I I wonder that I did you guys fly to California and and get a tour some things how to how to things look yeah Matt what did you what were your some of your impressions we went to California what your insurance rep Terry third look at Google if you are not going to speak yeah but it they were you know was great to see %HESITATION such an inviting environment you know much warmer weather than what we’re used to that time of year %HESITATION but it was just great to speak to arms you know some of the folks that are that are involved in this project goes because prior to that all the conversations were obviously over the phone and you know we we started going down the path of homes I’m doing some tests to see whether or not some from some voice samples from people with down syndrome would be able to strengthen the the technology in and have that you know the voice technology learn from that so we did a small test and that was part of the the group that did the test %HESITATION prior to going to California and then went to California it yeah we we did find out that okay we can tell this there is learning when when we’re able to provide voice samples from people with down syndrome and Matt did was some more recordings down there that the team and really kind of put the pats in place to begin recruiting people for this project and for this A. I. to work for project understood to really come into fruition we need donated voices correct yeah to date we have just over six hundred voices of people donated mac can you speak to some of the phrases and you had to had to say is part of the the project server remembered was eight Iraqis 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 the project for one person that thinks it’s seventeen hundred phrases so that’s a lot of phrases that can be completed obscene over multiple sittings yeah so having six hundred people you know participate where it’s a big time commitment where you have to record seventeen hundred phrases is it is a big undertaking we’re just thrilled the the success to date so you know I was really much a it’s an 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 or what have you so instead of playing catch emperor instead of not being able to take advantage of the of that technology %HESITATION we still do this is great that we can help shape the technology so that it’s usable to our community 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 lets the AI really get 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 was somewhere down syndrome if you look at someone like Matt he relies on his phone and the internet for you know scheduling work getting appointments and and communicating so first like mad isn’t it doesn’t have the accessibility to use the technology then it’s it’s very difficult so you know technology is also being equalizer so the inputs to that technology needs to be workable for 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 is 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 time line of this but depend on how many people we can get to donate their voices is gonna dictate how long it takes for the 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 always six only because you know we’re just speaking English language right so there’s all different languages out there different speech patterns within communities selectors there’s lots to do still when it comes with 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 the long process and you know we’re just thrilled to be a part of that %HESITATION the 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 A. I. all the time so this is fantastic to have a select group like lack of group that were 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 eighteen years and older that’s criteria got it now put links in the show notes of everything that people would need to donate their voice or maybe you could just give the details of how someone that’s interested and participate in this project could go ahead and do it yeah so you know you would go to our website project understood dot CA there you’ll see a very clear description of the project and and you know the steps involved in the project step one is because clicking the donate your voice buttons you know to complete an interest form they’ll get a name %HESITATION single goal restart recording simply Neri freezes and then they take those preliminary phrases to see whether or not the technology is able to %HESITATION learn from that and if so then you’re getting the full log in and %HESITATION you’re recording the the freezes Matt can you tell us a little bit about your experience when you when you logged in and recorded the phrases anything you want to share with that in the beginning when I started doing my recording I thank you thank you %HESITATION before I recorded it because I know what you share what not to shake and how do you R. Baker my voice is clear on that there are bike bricking it got my books yeah yeah we’ve heard some %HESITATION instances where you know someone would have someone helping them in terms of impressive if they were unable to to hear or read the phrase someone read it to them and then they would %HESITATION he daisy after yeah sold you know it’s it’s it’s it’s flexible that way but like I said it’s it’s a it’s a longer process in terms of single seventeen hundred phrases is a lot while how long did it take you again not to do you’re almost in half eight I knew you were going like hello all the time with it you know we’ve heard some instances where you know they spread it out over a week or two so you know it’s it’s you can pick up where you left off and and come back and forth as much as you want but project understood dot CA is the first step is the information that Google is 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 applied as you go so it’s just you know the the technology is always learning it learns %HESITATION learn best through repetition and and quantity so there isn’t like a set number that were waiting to to to hit before we you know then teach the technology to recognize all that it’s just it’s on going 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 a voice technology right now it’s all about the fun stuff right accessing music you know movies by stuff you know check the weather you know it’s it’s it’s the fun entertaining stuff but when you look at the at the future what what what can happen you know you could see you know picture booking appointments or when there’s driverless cars off their you know call and speaking into your voice system state Hey whoever you know picking up the take me to my job for stopping like there’s just so much there and then there is a two way communication aspect where there’s discussions and and people number numerous Ted talks on this with a talk about vocal biomarkers where the the technology is able to understand through the tone of your voice your voice sounds whether or not you know your kills so just picture you know waking up hi go gold and all the men are here you sound stuffy today would you like to call a doctor look at it you can see we’re we’re working goal and and I guess another thing as as you know as I think about the future with this you know is is the is companionship so I’ll and I think of my daughter and one in on a hear stories from other people who have down syndrome school very incluso one stick to these friends lots of fun lots of interactions and 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 your not going to school you’re not working or whatever so there’s there tends to be a difficult 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 will be one way and and you know I think that would contribute to fighting against someone feeling like their ice it’d or are lonely so not to say that would replace human voices but there would be that two way communication I think would be highly beneficial and maybe a particularly in those Canadian winners can I ask you how old are you man I am thirty right now and so my question for you with technology as obviously there’s been great leaps and bounds and technology over the last thirty years how has technology changed your life and your experiences I love technology really %HESITATION leave it to I use them all right so what’s your favorite like garbage really helped me look for different recipes and cooking staff starlight yeah I can get a penny your help me wrong that I can use when typing and 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 twenties you know the reliance on their phone is the same as as the typical person so it’s staying connected it’s it’s it’s looking for a quick text to add I can my phone to you directly extract instead of media is doing a big wrong taxed by hand I did do my voice instead yeah which is you know the same as any other typical person would want to communicate sort don’t point using tax so I don’t see a difference and there is just that reliance on technology to stay connected with friends and families as a key driver for this well I guess the reason why I was so interested Matt N. ow what technologies and how they’ve changed for you is because you are son Liam is ten years old and so our experience as parents have you know we’ve fought for Liam’s education and we’re constantly advocating for equality mostly right now because he’s ten with his education and one of the things that has always brought me hope was technology and how it’s changing to equalize that the playing field for my son and and the hope that what’s out there like %HESITATION and 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 in your journey over the last thirty years yes there are yes definitely familiar activities for the day have you tried going think that that can make you get yeah it really helped a lot thanks to you by phone or not all right real slow yeah and how would you feel if you know you didn’t have your phone or the internet connection was down are you are have you technology well that’s true for so many of us right I mean it’s in the world to my point it’s the same as everybody no I love that it I love that it’s opening so many opportunities yeah I just see it as the new trigger again like I said it replaces the keyboard so you know when you always see when you hear about the internet of things where you know your refrigerator is gonna be hooked up to the internet or or whatever it’s just it just seems like you know as Scerri and 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 and her to be a a fully contributing member of society the way she wants it to be so and that’s a thing 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 and then I’m all for absolutely is it really does bring me so much hope with the technology and and even just the changes that Liam has experience even with this %HESITATION home schooling I find that he’s progressing more because you 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 limited all of the other misconceptions that people might have and there want to put him in a certain box nobody nobody knows so he just jumps right in with everybody else which I feel is how it should be yeah I think we’re gonna we’re gonna find you know given the current situation with covert nineteen is that we’re gonna 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 technically isn’t going anywhere and voice will be in my opinion the the dominant trigger to that technology one of the first videos I saw after learning about project understood was a video that you and Matt did it which was a virtual presentation to the U. N. which was pretty fascinating and exciting like that for you guys specifically Matt can you tell me about that experience was really good during a future lifestyle you AG I want your support your to your ad in your career wise why do you have a different way because the armed robbery both try and be current with ed and our message that we sent give a great impact through your body yeah it was unfortunate that we weren’t able to go there in person to present you know 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 her her first campaign so it was just great to promote this campaign this project on a global scale you know via the United Nations so it’s you know it’s a personal thrill for me obviously and it’s the second time around for mad so it’s no big deal I was a map been there done that way well we had time to kind of touched on it before about perceptions of down syndrome what what particular do you think of as perceptions you like to change about down syndrome well I think you know first and foremost it’s a boat people first so you know when I think of my daughter or or Matt Johnson it is a part of them but it doesn’t define who my daughter is or who Matt is so you know it’s really yeah at a bare at the at the bare minimum is like it’s a person we’re all people are people first and there are lots of different people out there with lots of different abilities salt before having my daughter and you know I didn’t know much about down syndrome but you know the things that I probably thought about when I’d settle down centering worthy the limitations are what first one down so I can’t do since having my daughter and obviously you know meeting lots of people down so like mad things and seeing their abilities is change my perception that we need to focus on the abilities and there’s lots of abilities and it’s just a matter of raising the bar and and giving them the opportunity to to reach those abilities sometimes people with guns and we 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 mental challenges that they’re often face with that maybe weren’t able to overcome in the past so that’s what this whole journey has taught me in terms of you know people firsthand 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 we’re going to right now in terms of %HESITATION what’s happening %HESITATION Rossa a north American 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 of that now there isn’t one typical person there are lots of different in this world I love it yeah it’s a it’s an amazing time because I I see true change in this is this is part of it this project Matt do you have similar thoughts in in in what perceptions he you may be breaking through with this project and just with your life yeah %HESITATION I know that we all might be different well we all make a difference yeah I’m always the same every time because it is making a difference your people for a bit exactly %HESITATION I want to see that there are things that we can do if you can’t do and what do you think they can’t do we can do how often are people surprised when they find out that you live on your own we’re sorry was quiet the army are bad parents need thank you Robert you how often are people surprised when they find out that you know he’s held the same job for twelve years now yep yeah or if I don’t see saw one one of the videos for punch gonna start but you know Matt rides is his bike to work the check is scheduled to work and he was also writing one of the Google bites at %HESITATION at the Google campus and that’s surprise a lot of people again it’s just you know it it’s just changing the perceptions of and your staff yeah we can do and fifty we can change the experience of what we can you well I have I’ve just enjoyed speaking to the both of you for so many reasons I had I love what you’re doing with project understood %HESITATION I am I think it was like a year and a half ago Stephen was talking about technology and A. I. and that was a big concern because as as they were talking about you know getting voices into technology he brought up what about A. I. advocacy for down syndrome is what I wrote down in my in my goals was that was because I I’m a kind of a tech guy and so I said that need there needs to be a representation for down syndrome in A. I. 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 %HESITATION so on that level 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 %HESITATION adults living with down syndrome and kids in school what does that that’s hope that’s you know there 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 two here add your experience as another parent and your honesty I appreciate it %HESITATION 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 it 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 it for my son add to know you know that you’re out there and you’re doing that 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 %HESITATION and it’s that having the support and so I appreciate I appreciate you sharing your stories because as a parent it’s just it makes me happy really does and you know vehicles like your podcast allows meant to tell the story of people here man stories so we’re all in this together yeah and Matt thank you for joining us.

It’s been a pleasure talking with you today. Thank you very much for having us part of your podcast.

Thanks for having us.

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