Episode 23 - CP from Sea to Sea
Welcome, learners and learned alike, to Help Teach! Hello, and welcome to our community audio project. I am your host, editor, producer, and project co-lead, Mihai Covaser. I'm also a youth living with a physical disability. My most formative experiences living with a disability have come in the Canadian public education system.
Mihai Covaser:Many students like me with physical, emotional, or mental challenges go through their years of schooling lacking the supports and accommodations they need to partake of the same opportunities offered to their peers. The vision of this project is to provide educators in Canadian classrooms, students with disabilities, and members of the general public with the tools and knowledge that they need to make our institutions more accessible and inclusive for all. Join me and the diverse cast of guests as we explore perspectives on disabilities in education in this podcast series. One last message for you teachers tuning in: listen in each episode for our key takeaway that you can implement in your classroom today to help us further this vision!
Mihai Covaser:Hello, and welcome back to Help Teach! I wanna wish everyone, first and foremost, a happy Cerebral Palsy Awareness Month here in the month of March. And I hope that everyone who is in school has had a great spring break so far. I think we're just about in the middle of it. And that's actually gonna be the subject of our episode today. An overview of the story of cerebral palsy in Canada, and a kind of tracing the life of a CP advocate through education and into their professional lives in the workforce.
Mihai Covaser:Before we get to any of those topics though, I wanna start off by introducing a guest that has not been on the show before as well as a couple of returning guests. So first of all, to my returners, hello to Payton and Lucy. Welcome back to the show!
Payton Given:Hi!
Mihai Covaser:It's really nice to have you back, both of you. I know Payton, when you were on for the very first episode, the pilot of the show, we talked a little bit about your experience and about CP and, and in the classroom. And Lucy, I know we talked about you and your family. And I think those experiences are gonna be really interesting to bring back and sort of integrate this conversation. As far as a new guest, I would also like to take the chance to introduce Marco Pasqua. Marco, a good friend of mine that we've had the chance, that I've had the chance to work with quite a bit over the years. We initially met, I would like to say, through Variety the Children's Charity, and through our work there. And, yeah, we've held in contact ever since. So, Marco, welcome to the show!
Marco Pasqua:Hey, thanks, Mihai! You know, I'm the eldest of the bunch, so to speak, but, you know, I've watched you, watched you grow up, in life and, within, you know, kind of the speaking industry, so to speak, as an advocate. And I think you're doing an incredible job. So it was a no brainer, for me to come out here and be able to share my experiences, especially with educators because I had a lot of really positive educators, growing up who were there for me. And, I think it's important that we share our stories.
Mihai Covaser:Absolutely! Marco, I was hoping you would tell us a little bit about yourself for audience members that might not know you. Maybe a little, overview of sort of the work that you do, the role you currently hold and the stuff maybe that you did with Variety as well just in terms of a common point here.
Marco Pasqua:Sure. Yeah. I'll give the CliffNotes version so that, people don't have to have the laundry list here. But my name is Marco Pasqua. I'm 38 years old, now. I'm a father of a 3 year old daughter, and I'm a inspirational speaker and accessibility consultant. I'm also a trained Rick Hansen Foundation Accessibility Certified Professional, which is basically just a fancy way of saying, I know how to read blueprints and work with building designers and architects on how to create spaces of meaningful access. And that's totally different than accessibility, but we won't get into that right now. Over the past 13, 14 years, I've run my business now. And in the last 18 months, my wife and I, have been working together side by side after her maternity leave in our company, Meaningful Access Consulting, which is our accessibility firm.
Marco Pasqua:I've been in the, kind of business of advocacy for persons with disabilities, though, almost my entire life. I originally got a little bit of a spotlight when I was 9 years old on the Timmy's Christmas telethon, which used to be on CBC, and I was, chosen to be an ambassador there back in 1994, which is before any of you were born. But, in addition to that, I've really spent a lot of time with philanthropic efforts. I'm on 2 national not-for-profit charity boards of directors across the country that support youth with disabilities because it's so important to me, and I like to pay it forward. And, to tie that full circle, Mihai, that is how you and I started to intersect and and interact with each other was my role with Variety the Children's Charity, as I've been lucky enough to be one of the cohosts of the Variety Children's Telethon for almost 10 years now.
Marco Pasqua:And, a few years back, I'd say maybe 2019 or so, maybe even the year before that, you and I had the opportunity to be hosts together on the show, and that's how we met each other. And I was just totally taken by your drive, by your ambition. And, you know, I really can tell that you and I are cut from the same cloth. You remind me a lot of me when I was your age. And so, I really appreciate everything that you're doing in this space!
Mihai Covaser:Thank you very much, Marco. That's, that's really kind words. And, yeah, it was really a great experience to be cohost like that for the first time. I mean, I was on the telephone quite a few times, doing my little skits with, Chris Gailus from Global News and, and doing my little thing on stage there. So it was, yeah, really inspiring to be able to speak beside you.
Mihai Covaser:And here we are again! So thank you very much for joining us.
Marco Pasqua:No problem.
Mihai Covaser:So as I mentioned, this is Cerebral Palsy Awareness Month, which, Payton actually reached out to me first to ask me whether we could do something special on the show for this, which I thought was just a great idea. And we kind of came up with this thought of giving you in the audience - teachers, students, parents - a kind of a life arc or a kind of overview in that way of a CP advocate, like all of us here.
Mihai Covaser:And sort of tracing that through education, through elementary into high school and post secondary and then out into the workforce, which is kind of the track we're gonna take today. So, I wanna start there, then, from sort of earlier childhood and elementary school and talk a little bit about what it's like to be in school with CP. Now, again, that's something that has come up on the show in a couple of different ways. But I'm gonna put that to my guests here on the show that are closest to that point in education. Maybe, Payton, I'll start with you.
Mihai Covaser:I wanna ask you, just sort of in broad strokes, how was your elementary school experience as far as you remember it, with CP? How was it kind of shaped by that, in your experience?
Payton Given:It was interesting, to say the least. The teachers all had good intentions, but the lack of the teachers having the resources they need, always being paired up with other kids with different disabilities, whether it'd be more severe or different altogether. They were unable to help me in certain ways. So I would basically put to the sideline majority of the time when I was with other students. Because with me, I can be independent, but I need help and when I was in elementary school, I needed more help than I do now. So I wasn't able to go out on the playground with all my peers because, a) the playground wasn't accessible b) I was paired up with someone, so I wasn't able to be lifted on the playground. Because here in Nova Scotia, the EPAs, even 10 years ago, were not staffed. And as they are today, it's gone into a bigger issue. School is interesting. I advocate for myself. I have my dad advocating for me. But if I could not advocate, I don't think all my needs would be met.
Mihai Covaser:Yeah. That, that resonates a lot with me, a lot of those points, especially that sort of partial or near full independence, but needing support in some ways. And the fact that we get a lot of boxes, I wanna say, in the elementary school experience. Maybe I'll throw that to Lucy and ask, is that kind of how it, how the experience was for you and your family, as well? Lumping people together and, and sort of having that be not as tailored to what your sister, for example, might have needed?
Lucy Diaz:We were very blessed at our the school that my sister was able to attend, they did have experience with a lot of students with a variety of disabilities, and she did have one on one educational assistance. So that was great, but I think something that really excluded her was especially things on like field trips. And as Payton said, when going out to the playground, where a lack of accessibility really caused problems where she was unable to play with the other students even though she had really great relationships with the other students. Like, they were best friends. They would want her at every activity.
Lucy Diaz:They would speak to her, but a lack of accessibility on the playground really caused problems. And then on things like field trips where the EAs were like, they had to be with other students, that meant my sister could not go on any field trips whatsoever, even if she was able to accessibility-wise. The EAs were supposedly required to help other students even though their primary job was to be one on one with my sister. But other than that, I think the EAs were, at least the one that my sister got, she's had the same one for years, at least in elementary school, was very knowledgeable and was very passionate and did everything she could to help my sister.
Mihai Covaser:Mhmm. Mhmm. Yeah. I mean, this is a a message that I hear a lot and that I have experienced myself, which is that it really comes down to the people a lot of the time. It's a, it's really amazing what we can do with even the little resources that would tend to get put in our direction as long as people are open and flexible and willing to put in the the work for that which, you know, not saying that that should remain that way forever, far from it. But I really do see that a lot. So I wanna put that question, then, to whoever wants to answer first: Speaking of advocacy and sort of being able to self advocate, I know that what happens for a lot of people is that parents are such a strong force for us and they really kick-start us on our advocacy journey. I'm in a position where I started speaking and speaking for my cause very early on.
Mihai Covaser:But I wanna put that to whoever wants to to answer first here. When did you begin your advocacy journey and, and how did that kick off for you? Yeah, Marco.
Marco Pasqua:Yeah. So I mean, I think it's really important that I mentioned that even though I'm not close to the, to the age of being in elementary school, I still very much remember my experiences in advocacy. And, before today's conversation, Mihai, I remember telling you that my mom was a huge advocate for me, even to go to my elementary school because my elementary school was very close geographically to our house. I could see it from my bedroom window practically, you know. And when my mom went to register me at that school where my sister, who was, you know, typically able, was already going to school, said, well, as much as we'd like to have your son attend our school, we can't have him come here because we don't have a ramp to get him into the front entrance of our school.
Marco Pasqua:And my mom was like, “Well, how is that a deterrence? Just make the ramp.” And they're like, “Well, no. We, we can't. It would require concrete.”
Marco Pasqua:And she said, “And?” Remember, this is back in the 90s, right? And so, you know, she really pushed for that because they wanted me to go to a school that was adjacent to that school, but it was much further away, to the point where I would be required to take a bus every day to go even further. And my mom just continued to advocate for that until they actually did pour the concrete and make the ramp.
Marco Pasqua:And this is so much more than just about me going to that school. It was so that children in the future could also go to that school. Also, Mihai, I didn't mention in the beginning of the intro that I'm the provincial spokesperson for the Cerebral Palsy Association of British Columbia. And, you know, although that is my role today, I think a lot of that is inspired by what I saw my mom and my family do early on and that it's okay to own your story as an advocate and be able to be there. Now keep in mind too, my mom wasn't taking this from an activist approach, and I've told this to you before, you know, the difference between an advocate and an activist.
Marco Pasqua:You know, an advocate is somebody who recognizes a challenge and brings solutions to the table, whereas a lot of activists that I see, they approach things from a place of anger. And, yes, you're allowed to be frustrated, but oftentimes I find that individuals who I would identify as activists don't come to the table with a lot of solutions, just a lot of the problems and a lot of their anger. And so this is where it's really shaped the kind of person that I wanted to be when it comes to utilizing my voice, is taking that advocacy route, thanks to those early days when I saw my mom. So thank you, mom.
Marco Pasqua:I know you're probably not listening in on this podcast, but if you get a chance to hear it, because she does follow all of my material. So when we post this, I will post it and my mom will probably be cheering on. I want to thank her for all those early days and the early inspiration that she did for me.
Mihai Covaser:Yeah. Yeah. Absolutely, no, that's, that's really inspiring.
Mihai Covaser:And I wanna direct our audience, in case you haven't heard this episode, and to all of you, actually, to Episode 16 of the show. I believe that's Season 2, Episode 4. And that is with Melissa Grassmick and her daughter who is a local, that is, West Kelowna, advocate who built the first accessible playground for the city of West Kelowna for her daughter and for all her daughter's peers. And that was constructed just this past summer, it was finished.
Mihai Covaser:So incredible work. I mean, you know, and she talked a lot about this in that episode, about going to city council and saying, “Well, here's what needs to get done. But not only that, here's all the plans that I researched and put together. You just have to do it.” Right?
Mihai Covaser:So, it makes things easier. Yes.
Marco Pasqua:I love hearing that. I love hearing that.
Marco Pasqua:She's amazing. Yeah. Payton or or Lucy, do you wanna add to that? When did you kind of start on your journey?
Payton Given:I started in grade 1, when I figured out- because I was never told really, like, that I'm different than everybody else. But I figured it out. And when I started school, I was in a wheelchair, of course, because I can't walk. And that was 10 years ago, so 2013. But in grade 1, I figured out that there is no accessible, really no accessible gym equipment. So I had to jimmy something up, and I was sick and tired of not being able to do the same thing as the other kids. Because every child, no matter shape or form, should be able to do everything like everybody else, no matter if it's a different way. And that's what I thought when I was 7 years old. So I went to my principal. I demanded that he get the accessible scooter things, so I can go and play like all the other kids. And he was like, “No. That's too much money.” And I was like, “Oh, wow. You want all your students to have an active role in your school. Right?” He said, “Well, yeah.” I said, “Well, then where is the credit card?”
Payton Given:I said, “I'm pretty sure you have it.” And he said, “Well, yeah. But it might not be covered.” I said, “Well, you're gonna figure out a way to cover it because you're not gonna see a very happy Payton rolling in your door the next time! So give me the credit card or you buy it!”
Payton Given:And just imagine me as a little girl in a pink wheelchair, pink and purple wheelchair, rolling into my principal on his last year of being a teacher ever, saying “Give me the credit card so I can have an active role in your school.” So that was my first advocating journey.
Marco Pasqua:You go, Payton! That's amazing
Mihai Covaser:I am humbled. That is beautiful. I aspire to that level of absolute sass and and efficiency. Like, that is, that's amazing.
Payton Given:I haven't lost my sass either.
Mihai Covaser:Clearly! Clearly. You know, Payton, hang on to that. I'm sure people will, you know, that that will serve you well. Lucy, I wanna turn the question to you here before we sort of wrap up this side of the conversation.
Lucy Diaz:Yeah. I think for me, my journey was a little bit different since it is my sister, the one who has cerebral palsy, and she is nonverbal, and she also uses a wheelchair full time, and she relies on other people for most of everything she needs, including going to the washroom and things like that. So for me, it was mostly my mom, obviously, advocating because I was, I don't know, 10. And since, I guess, it didn't impact me directly, I didn't have to as, like, for most of you, you didn't have to advocate from such an early age.
Lucy Diaz:But once I did realize and I got to the age where I realized that my sister was being excluded from a lot of things, that's when I started. I think I was around 12 when I started, and I was mainly focusing on accessibility in washrooms because I think that's one of the biggest reasons why my sister struggled in elementary school is that halfway through the day, my mom would have to go to the school in order to change my sister's diaper because the school can't do that, number 1, and 2, they didn't have proper facilities in place.
Lucy Diaz:So my sister actually ended up leaving elementary school for, like, an online school type of thing in grade 5 since she was getting pretty tall, and it wasn't no longer safe to carry her from her wheelchair to an adult changing table. So that's when I started, and I started advocating to increase accessibility by adding adult changing tables and by adding hoists into washrooms. And it's been I don't know how long it's been. Been, like, 4 or 5 years since that.
Lucy Diaz:And although I don't really focus on schools, I try to focus on hospitals, I think that's where it all started. And it's something that has greatly impacted my sister's educational journey.
Mihai Covaser:Yeah. No, I'm really excited to hear all of these different approaches and different ways to get started with this. I think it's really exemplary of something that I wanna drive home this episode, which is that, I mean, that's the thing about CP, which maybe, you know, maybe I'm remiss not to talk a little bit about it, from a sort of general standpoint. Maybe I'll do that just before we move on here.
Mihai Covaser:But it's a condition with such varied manifestations and symptoms and ways of life for for different people. And this is, you know, gonna be a great example, I think, of that, of different people with different experiences that all are under one sort of medical title, but that doesn't mean much in terms of accessibility, in terms of how it is socially. Right? So I should say - and, Marco, you can totally correct me if I'm wrong here - but, how I would sort of summarize it is that cerebral palsy, it's a motor condition and it's a neurological motor condition.
Mihai Covaser:Typically, what happens is- so for example, for me, what happened was a lack of oxygen to the brain before birth. And what happens is you get some neuron death and that contributes to conditions that can really vary, like I said, in terms of how they manifest. So for me, it's just the muscles in my legs that are affected, that I don't have as full control over. In my case, they are spastic, which means they're tight all the time, and that makes it difficult for me to walk. For other people, you know, it can be one side of the body vertically, so left or right, arm and leg.
Mihai Covaser:It could be full body including, like we have here, wheelchair use. Also, all the way to nonverbal. And you also have a a version that is not spastic, but it's the opposite where the muscles are actually too loose. But that's kind of how it typically manifests. Any details I missed there, Marco?
Marco Pasqua:No, you got it, man. Yeah. For myself, it's called spastic triplegia, and that's because it affects my two legs and my right arm. So my left arm and hand is the only limb that isn't impacted by my CP, which means I have full range of motion, full dexterity, full reactability, that kind of thing, but I do experience spasticity in a similar way to you and many other people.
Marco Pasqua:And for me, it manifests in the way of using a manual wheelchair to get around. So up until the age of 13, I actually was able to free walk, without supports. And actually my, my CP didn't get worse or anything like this. It's just I had 13 surgeries from age 0 to 13 growing up and my last surgery was called a tibial rotation, where they broke both my legs voluntarily because my feet were starting to turn inwards towards themselves because of the tightness in the muscles.
Marco Pasqua:And the goal was to straighten the leg out and have my feet pointing forward, which was a success. But you can imagine being in a cast for 2 months from my hips to my ankles on both sides at the age of 13, when I was a growing boy, means that I basically had atrophy that entire time. So my, the muscle growth that I had developed at that time was completely eradicated by the time I took the casts off, and it was like start starting from the ground 0 to train myself how to walk again. And, unfortunately, it just was not as successful for me to transfer weight like it was prior to the surgery. So, although it was a success in terms of straightening my legs, there was a bit of a setback with regards to my ability.
Marco Pasqua:And I use the chair now because it's quicker for me to get around than using forearm crutches or a cane or anything of that nature.
Mihai Covaser:Yeah. Yeah. So like I said, very differing experiences. So mine, for example, would be called spastic diplegia because it's only my two legs impacted. And I'm independently mobile, which like I was talking to Payton about, that manifests in very odd ways in the school system in particular because you have, on the one hand, liability and you're in the disability box. On the other hand, I can do whatever I want, for the most part.
Marco Pasqua:Absolutely.
Payton Given:And mine would be quad- quadriple-... I can't say it.
Marco Pasqua:That's right. Quadriplegia. Yeah. Yeah. Right.
Mihai Covaser:Well, after that brief aside, which I think is important to contextualize this for our audience, I wanna move to the second part of this, which is talking about high school and post secondary! Just before we do that, I'm gonna put a little midway pause here for our audience to say that you are listening to Help Teach and we're gonna get to that discussion in just a moment. Don't go anywhere. We'll be right back!
Mihai Covaser:Welcome back to Help Teach, where I'm here with my wonderful guests, Lucy Diaz, Payton Given, and Marco Pascua talking about cerebral palsy for Cerebral Palsy Awareness month. And we just finished off talking about elementary school, early childhood advocacy, and the condition itself of CP and the broad condition that it is. And I wanna move now into the sort of high school and post-secondary experiences. I think we all sort of converge in terms of timeline, here, most closely to this period. And I wanna sort of pose a similar question, which is how was your experience in high school shaped by CP or as you're experiencing it now?
Mihai Covaser:Also, if you want to answer what- or, how, should I say, do the peer-to-peer and teacher-to-student dynamics change during this transition? If you wanna focus on that because I think that's really interesting. I know for me it's been very different moving to post-secondary from from high school, even to high school from elementary, thing- things do change. And I wanna sort of hone in on that as you, as you answer this question. Maybe I'll turn to Lucy first here.
Lucy Diaz:Yeah, sure. I think I have a bit less experience with this because as I mentioned, my sister- after elementary school, we did switch her to an online school format, partially due to accessibility concerns and partially due to she's not as advanced, I guess, as the other or typical middle school or high school students would be, so we're able to shape her education more to her level that she is at right now. But I think something I can, I guess I can mention on the elementary school to online school transition that was very interesting is that I felt like there was less interest from the teachers from the online school despite them maybe having more time to have one on one time with the students even if it is online, but I felt like they were less interested than some of the elementary school EAs were.
Mihai Covaser:Interesting!
Lucy Diaz:Yeah. I don't know if maybe it's, like, a bad experience, like a one-off that we received, but, unfortunately, the EA that we were given for my sister was very, or is very, nonchalant about it. It doesn't really matter, especially when it comes to getting her the things she needs. We do have sufficient, like, support at least monetary-wise, but she doesn't seem to really care or see the need of getting those supports as quick as possible. So that's unfortunate, but other than that, something that I really like about it is that we're able to have my sister in a place that she feels comfortable, that she is happy in, and we are also able to, like, outsource to other teachers in the area that can come into our home and give her one on one in person.
Lucy Diaz:And, yeah, that's kind of been her experience or our experience.
Mihai Covaser:I haven't really, I haven't really heard people say that. That moving to online has a kind of like, that they've had people seem to care less in an online environment than a physical environment. That's a really interesting observation. I don't think I've heard someone express that before.
Payton Given:Yes, I've heard the opposite. So that's good to know.
Mihai Covaser:Yeah. Yeah. I mean, goes to show, right? It can really be a different experience for different people! Payton, what about you? How has this been? I know you're kind of right at that transition.
Payton Given:I'm right in the middle.
Mihai Covaser:Yeah, right in the middle. So how is that going? And how do you think those relationships have sort of changed for you?
Payton Given:Okay. So high school is better than junior high or elementary. The learning center teachers, honestly, feel, in my opinion, have shown more compassion, more drive for wanting the best for individual students. They've shown me the different routes I can go after high school. The transition paperwork just went in to start teaching me about technology, like, such as how to cook, like, all the different things that I will need later on in life.
Mihai Covaser:Yeah. Yeah.
Payton Given:They will also have the assistive tech team come in and show me what technology is out there for the future, for what I will need for secondary school and onward. Because I am hoping to be an occupational therapist. The peer to peer like, the teacher to teacher has been great. There's a, there's a lack in peer to peer.
Mihai Covaser:Mhmm.
Payton Given:Because in my school in the Nova Scotia School Board, I feel like there's a big gap in teaching elementary school, high school, junior high students about people with disabilities. They teach all about different kind of ethnicity, all sorts of things. I feel like people with disabilities, persons with disabilities, haven't been put into the spotlight yet. And that is frustrating as a person in a wheelchair, knowing what's out there and the teacher not having the resources or the tools to be able to accurately give what their students, their people of tomorrow, need to go into the workforce because we're not in a box anymore! We are not the same people as every other person. We need resources. We need people to know what we will need in the future. It's people like me, people like Mihai, Marco, Lucy's sister, that need the people to know that we're just like everybody else. But the best way, in my opinion, to teach people is from a young age because the smaller you teach children, the more the kids will absorb everything you say. Because from age 3 to age 6 is where kids grow and learn the most. So the more we don't teach about people with disabilities, the harder it is for the people of tomorrow.
Mihai Covaser:Yeah. Really well put, Payton. I think that speaks very well to a lot of the goals that organizations like Rick Hansen Foundation have for example. A lot of, you know, what they wanna do is put more of these educational resources out to classrooms of younger students. Because that- you know, in some sense, I really appreciate what you're saying because it's not necessarily a student's fault that they don't have the knowledge to be more welcoming of people with disabilities in sort of the peer to peer sense.
Mihai Covaser:Part of it might be, you know, attitudes and that kind of thing. But part of it is also how much you know about it.
Payton Given:Lack of education.
Mihai Covaser:Yeah. And the unknown is confusing. And it's hard sometimes to integrate that kind of thing. So I really appreciate what you said. Marco, I want to turn it to you and ask, have you seen, in addition to the, sort of, this perspective and this question, have you seen that change in terms of people you've spoken to from when you were in high school compared to now? Maybe, how have you sort of traced that evolution? But I'll sort of leave that to you to answer how you like.
Marco Pasqua:Oh, geez, Mihai. You know, when I was in high school now that's, when I graduated, that was over 20 years ago now. That's graduating high school, let alone anything. So I'm, we practically were in black and white films back then.
Marco Pasqua:I'm just joking. But, no. No. No. Honestly, so I'm really fortunate because when I was in high school, and maybe it's because there was, more of a focus on integration back then or it just depends on the roll of the dice at what school you go to and the educators that are there.
Marco Pasqua:But I was very fortunate in that the attitudinal barriers, at least from the majority of my educators, when I was in high school, were almost nonexistent, especially, in, believe it or not, physical education class. So I had a lot of teachers who were super supportive about integrating me into the class and knowing that if I wanted to be involved that I would just require maybe some slight adaptations, but they didn't make a thing of it with regards to making me feel secluded or different. And I actually found, I didn't mention this in the elementary school part, but I was bullied a lot in elementary school and not so much at all in high school. It was almost like the maturity level of the students, recognizing that regardless of what clique you're in, whether you're a band geek or whether you're a drama kid or an athletic kid, I was friends with everybody from every clique. And I think the reason being was just because, you know, as much as there's a push today about this so called ableism and racism and all this stuff, I actually experienced less of that when I was in high school, back 20 years ago than I think we're experiencing today because there's this almost perpetuation of it in mainstream media that it's an issue that I almost think it plants a seed in people's minds of “it's an issue,” and then it almost inspires them to be that way, which is not necessarily a good thing.
Marco Pasqua:I think that, you know, because there was less of a push for that, I didn't experience that. With regards to educational assistance, you know, EAs, I too had a very similar experience to Payton in that I had really great EAs that were there to scribe for me and that were there to help me because my dexterity in my writing was not as quick as your average student. And so I actually had, you know, a scribe for things like English class so that if I had to write things out as opposed to typing, because this is before mass use of computers in school, that I had a scribe there, and they would check how do you wanna spell "(there/their/they’re)"? You know, there are 3 ways of spelling “(there/their/they’re)” because they, they're not supposed to, you know, correct that for me. They want me to educate myself.
Marco Pasqua:And then lastly, to your point around education, I think that today, it has changed a lot. Thanks to programs like the Rick Hansen School program, as you mentioned, Mihai, because there are active programs which people can download for free, from the Rick Hansen Foundation to bring into classrooms and integrate not only into the classroom for people who would be defined as typically able interacting with those with disabilities, but also in the playground settings as well. So not just in elementary school, but also in a high school, how do you integrate those with disabilities to get more involved in physical play? As opposed to when I was in high school and the teachers would be like, let me come up with some adaptations with Marco's advice so that he can feel fully integrated. And that was awesome because I was being brought on the journey myself and being respected enough that the teacher said, “Marco, you know your own abilities. Tell me how we can make this work for you even if we have to adapt the rules to dodgeball so you can get more involved.”
Marco Pasqua:And, that was really special. I'll give you a quick example. I'm very long-winded, so I apologize. But I'll give you a quick example. When I was in, high school, to modify dodgeball, they said it only counts if you hit Marco in the body.
Marco Pasqua:But if you hit him in the wheelchair, it doesn't count. Well, what did this do? It changed the mentality of the students. So now I was the first person picked because they could use me as the official shield to block all the balls. But that's a good thing! That's a good thing because now I was seen as an asset and I didn't take offense to it because, because now they actively wanted me to be more involved and then I was able to store the balls in the spokes of my wheels and have some fun and have some laughter. And ultimately, that's what it's about when we're talking about integration in any of these settings is let somebody be themselves and let that disability fizzle away.
Marco Pasqua:Yeah. I think it's, it's a very interesting subject. You know, there's actually a debate coming to the University of British Columbia Okanagan, where I study. We have a public debate being hosted called, “Has DEI (that is, diversity, equity, inclusion) lost its way?” So it's a debate between 2 academics on the subject of what EDI or DEI looks like today. And, you know, whether it is doing what it's intended to do.
Mihai Covaser:And it's a, it's a hot button issue in the community, right, about what do these programs look like? What are they achieving? And are they maybe detracting in some ways, like you say, from thinking of this like, not thinking of disability as opposed to making it front and center. But there's also a part of it that I'm, you know, I understand and I'm sympathetic to which is you can't, you you can't fix things without talking about them either. Right?
Mihai Covaser:So it's a hard balance to strike, but I appreciate you talking about that. That's really interesting. With that, then, let's move to the last part of this discussion, which is moving out of this kind of high school and post secondary into the professional world. Just before we do that, I wanna mention that as part of the Rick Hansen Foundation, us Youth Leadership Committee, which, Lucy, Payton and I are all a part, We will actually have as an end-of-year project a blog post series about transitioning to post secondary as a person with disabilities.
Mihai Covaser:That's a subject I may broach in another episode on its own because there's lots to talk about. But as someone that is at post secondary, there's a lot that I didn't know moving into it about how disability would be treated, and there's a lot that's changing. So I just wanna direct our audience to watch for that series. And I will definitely post that wherever you find this show. It'll probably be in an episode description.
Mihai Covaser:I'll post it on social media. And just watch because we will talk a lot in the coming period about transitioning to post secondary and what that looks like, but I'll just sort of bracket that for now. So, of course, we're talking about school. School in broad swaths is designed to be, to train people for the job market in a lot of ways. And as people move into the professional world, there's a whole new set of challenges that come with that!
Mihai Covaser:So I wanna put some questions starting with you, Marco, and then I'll put it to Lucy and Payton as well. But, as someone who is in a very prominent public, professional world sort of advocacy role for people with CP and people with disabilities broadly; a couple questions. So how have you seen CP recognition or how is that being treated now? What, what are some broad, sort of key elements that you see? How has it changed? You know, how has some of the stuff we've been talking about, about school, translate when you get to the job market?
Marco Pasqua:Yeah. So it's really interesting that you bring that up, Mihai, because, you know, a lot of the other disabilities out there, whether somebody's on the autism spectrum or has Down syndrome or any of these other conditions, these other disabilities are much more known to the general public without doing a lot of Googling or research whereas cerebral palsy, you know 10, 15 years ago was actually not really known to most people of the general public. They've maybe heard of one person, you know, anecdotally that had CP, but that doesn't mean they understood it. However, as we've watched pop culture grow and change over the years, there's been many shows like Breaking Bad, a show on ABC that used to be on ABC called Speechless, and various other shows on Netflix that have prominently featured actors and persons with disabilities, specifically with cerebral palsy.
Marco Pasqua:And I think that that has actually helped to have people go, “Wait a minute, what is CP? What's that all about and how does that change?” And I think that that has really impacted, you know, the workforce, the job market, the entertainment industry, and so on. Right? And, for those who don't know, after high school, I went and got a degree as a video game designer at the Art Institute of Vancouver, and I got a job at Electronic Arts and worked for one of the biggest game studios for about 5 years.
Marco Pasqua:But it was not an easy route. It was not easy for me to get into that position. It was not easy for me to really get in there. I had to, once getting in there, really prove myself, and I think that it comes back to attitudinal barriers. I think that there wasn't a lot of resources or tools on how do you support somebody with a disability in the job market?
Marco Pasqua:And it's not that by and large employers are ignorant or that they want to be disrespectful. It's literally that they don't know and that there was nobody really paving the way and showing them that accommodations don't just mean pouring cement to build a ramp or building an elevator. It can be simple things, like accommodating somebody's desk setup or making sure they have the right software installed on their computer to be an effective employee in the role that they play, depending on what it is that you do for work. And also the, the stigma that people with disabilities, they're all on on persons with disability supports, so they don't actually want to work, right?
Marco Pasqua:And that's just not, that's the furthest thing from the truth! It's about developing quality of life. Right? Yeah. And and a lot of people with disabilities are actually very hungry to work, so hungry to work that they're some of the most effective employees out there! Because once you give them the opportunity to get there- exactly, Payton. Once you give them the opportunity to get in the workforce, they're really eager to prove themselves. And yes, that's a generalization, and I'm not saying that everyone feels that way, but many people with disabilities of all kinds, even outside of CP, really want to prove themselves and say, "I'm more than a Walmart greeter," so to speak. Because people make that assumption that, "Oh, well, we'll just slap you in front of a Walmart and you can say hi to people." Well, I'm sorry. Don't placate me. There's so much more to me. I have education, you know. I've gone through the route. I'm just like anyone else who's gone through the education route.
Marco Pasqua:I just do things differently, but my way of looking at the world differently and approaching challenges actually might be an asset to your organization, as opposed to a disadvantage. And so that's where I've really helped in the roles I've played as an accessibility consultant for Fortune 500 companies, for small businesses. I'm going in, I've done work with this group called Hirefortalent.ca and that's a resource based website that has resources for individuals across Canada, for free, for employers on how to hire people with disabilities. And then more locally here in British Columbia, Accessibleemployers.ca, which was an initiative that was started by the provincial government where they had 25 of BC's change driven BC businesses who are looking to create more inclusive workspaces, and I was hired of one of only two consultants back in 2017 to create resources based on their best practices that other BC businesses could follow, everything from accommodations to onboarding to recruiting persons with disabilities to show people that it's not as difficult as you think that it is.
Marco Pasqua:So now that we have the resources out there, Mihai, I think that more and more employers are actually saying, like, "Hey, you know what? Let's do this! Let's get on board!" And it's not because of DEI initiatives, at least that's from my perspective. I want people to do it for the right reasons and that they want a good person, who's the right fit for the right role. I am never a proponent of affirmative action; oh, that you have to meet these certain number of disability employees in your, in your repertoire or in your staffing. I'm never gonna support that. I want the person who happens to be the right person for the right role in that position, and if they happen to have a disability, then so what? That's fantastic, and I think that's great. So I'm here to kind of shake things up a little bit in the DEI space, so to speak.
Mihai Covaser:Yeah. Yeah. Yeah. No, I appreciate it.
Payton Given:I 100% agree. I agree.
Marco Pasqua:That's awesome. Thanks, Payton.
Payton Given:Well said.
Mihai Covaser:Yeah. I appreciate you bringing that perspective. What I did wanna say, I just have to talk about this because it's one of my crowning achievements, and I think it's hilarious. So Justin Trudeau and Chrystia Freeland held a high school town hall where 16 Canadian high schools, you know, were invited for this online meeting where they could ask questions about, you know, new policy and that kind of thing as part of a sort of campaigning effort. And I was chosen with a couple of my peers to represent our high school, Kelowna Secondary, which was, you know, biggest high school in the province for a long time.
Mihai Covaser:So we we had a couple of representatives. But we basically crafted a question around disabilities and the job market, and especially in the COVID context. This happened a couple of years ago. You know, what are- what is the government planning to do to help people, like people with disabilities that were definitely disproportionately affected by job loss and things during the pandemic? And only a little bit of shade on Mr. Trudeau, but he was sort of like rubbing his legs, he looks very nervous and he gave me about, you know, 2 minutes worth of absolutely no answer whatsoever. It's truly impressive how much non-information they can pack into so many words. And it was, you know, bittersweet. I mean, it was funny, but obviously not what I was hoping out of that interaction.
Mihai Covaser:Fortunately, Mrs. Freeland, she she had a bit of a better answer regarding the Canada Disability Benefit that might be coming back and that kind of thing. Another conversation for another day, but I'll link some information in the episode description for people that are interested. But, yeah. Speaking of sort of disability is being swept under the rug sometimes. So in the conversations of being like, well, I don't really know what we're doing on this! But...
Marco Pasqua:Well, Mihai, first of all, congratulations for putting, and I believe that Mister Trudeau does need to be put in the hot seat a lot more because, but that's a whole other podcast, I think. But, but good for you for calling them out because honestly, I don't want anybody to be placated in the disability community, and I also don't want empty platitudes with regards to the solutions at which you're going to approach. I don't wanna just be told things because it sounds like the latest thing that people want to hear. I wanna see real driven action based on the changes that we can make as a society, and that means we need to make a more collaborative effort and take it seriously when individuals, parents, caregivers, loved ones are speaking up and saying that these are the changes that we want to see.
Marco Pasqua:At the end of the day, there's this misnomer that people with disabilities are non-market participants, meaning, well, it's this small market, isn't it? Well, no. Absolutely not. In 2024, 8,000,000 people in Canada identify as having 1 or more disabilities. That's 27% of our country.
Marco Pasqua:27%! And I'm talking about invisible disabilities as well. So is that a non-market? No. That's one third of our entire, you know, populous, is impacted, you know, by a disability in some sort. And then if you tie in the impact to friends, family, or loved ones, that's over 50% of people in the country who don't have disabilities directly, but are caring for somebody with a disability. So there's a lot of money to go around in a positive way by enriching the environment and the economy by supporting persons with disabilities, period.
Mihai Covaser:Yeah. Yeah. Just before we sort of wrap up here, I do want to put this to Lucy and Payton. I want to ask you, do you have particular concerns moving into the job market? You know, I mean, you may be a little ways from that, but do you have thoughts you wanna share?
Mihai Covaser:Do you have some concerns? I think it would be interesting to hear from people that will be there in, in the coming years. And, I'll put that to you just before, for a quick comment before we move on to to wrapping this episode up.
Payton Given:I guess I'm concerned. I'm concerned that there won't be, that there will be a lot of attitudinal barriers as well as physical barriers for me in the workplace. And even though I wanna work in a hospital setting, a lot of time, there aren't up-to-code, accessible features in a lot of places because people need to put money where their mouth talks, I'm sorry.
Mihai Covaser:Yeah. Yeah. Fair enough. Lucy, do you have similar concerns? Other thoughts?
Lucy Diaz:I think, I guess mine is a little bit of a special case with my sister that I don't think she would have the opportunity to have a job due to being nonverbal and that, mentally, I don't think she has the capacity to get a job. But I think, personally, something that I worry about is after my parents have retired, they've been taking care of my sister for their entire lives. They're tired, you know, taking care of someone full time, especially with needs as complex as my sister, she does have a seizure disorder as well among other things. It's difficult, so I guess it's hard to think about that in my future, how do I balance my life as well as caregiving for my sister and ensuring that she has the care she needs?
Lucy Diaz:And I think the thing I worry about the most is that she is nonverbal. So that if something is going wrong for her that I'm afraid that I can't meet it since she doesn't have the capacity to clearly explain it. Like, we do communicate. She, we have ways to communicate, but there's no way for me to clearly know if there's something that she is missing, if there is something that she needs. So I guess it's worry, a worry of mine that how will I be able to balance my life in post-secondary, in my job, as well as taking care of my sister and taking care of my parents, that ultimately they will also need support as they get up there in age.
Mihai Covaser:Yeah. Yeah. Well, I really appreciate you saying that. That's a really, that's a vulnerable sort of position to be in and to tell us about. So I really appreciate you sharing that.
Mihai Covaser:And that goes very much with what we've been talking about, that there are many ways that people that have a disability or are in that disability space, many ways to support people and many ways that need to improve to make sure that people are having the quality of life that they need. Well, with that, I wanna turn it to our sort of key takeaways for the episode today and to what we want to offer teachers in particular, but people more broadly, related to education and to CP, and how we sort of treat that in Canada. So I'm gonna turn it to each of you in turn to share your thoughts on this before we wrap up the episode. Payton, why don't you start with your suggestion?
Payton Given:Having resources for teachers, students, staff, parents is what we need to move from because I feel like there's a great divide in high school, post-secondary, and onwards. Because a lot of people think, "Are you going into a group home? Where are you going? What can you do? You're in a wheelchair." That's what students have said to me.
Mihai Covaser:Yeah.
Payton Given:And that's a sad reality because like Marco said, we all deserve a good job, a job that we can do. And I think there needs education, I guess, is finding- fighting for your students, fighting for your staff, fighting for people with disabilities, being an ally. If you're not disabled yourself, be an ally for those who cannot talk, cannot voice what they need. Be an ally.
Payton Given:And a lot of people would rather be asked a question than somebody assume. So I guess that's my key takeaway.
Mihai Covaser:Thank you, Payton.
Payton Given:Thank you for having me on the show.
Mihai Covaser:Of course.
Payton Given:I always appreciate it.
Mihai Covaser:So do we. Always a pleasure. Marco.
Marco Pasqua:Yeah. I think it's really important, that we recognize that each educational environment is different, you know. You somebody may go down the traditional route. They may go from elementary school, high school, and then go into traditional post-secondary education, or you know, that kind of thing. However, you also have to recognize that that may not be the right fit based on somebody's needs.
Marco Pasqua:You know, based on, for example, Lucy, your sister, you know, is not going down a traditional route, but that's okay. What's what's wrong with flipping tradition based on the needs and understanding that. Right? And so it's not a one size fits all approach, especially from an educator's perspective. You have to understand that everybody's going through their own unique differences and journey.
Marco Pasqua:And, and we have to meet people where they're at. Right? And then lastly, for the parents out there, I appreciate your standing up for your child and advocating, but trying to make sure that it doesn't verge into overprotectiveness because there may be new strategies or techniques that the educator truly is trying to be helpful with that you could be more open minded as well to meet them where they're at and maybe understand, actually, this person is not trying to shut down my child's education or development. They're actually trying to help me grow in a way that I wasn't able to see before because I was blinded by wanting to make sure that my child was safe. You know, there's a balance on both sides, and I think it's important for everybody to think critically about the information that they're being fed or told.
Marco Pasqua:Don't just take any information you hear out there from one source, hear it from multiple sources, and then make the best decision based on the much research that you've done, on on both the side of the educator and the parent.
Mihai Covaser:Yeah. Thank you very much. Lucy, I'll give you the the last word there.
Lucy Diaz:Yeah. I think for me the key takeaway is that, especially for teachers is to make sure that you foster relationships not just between the teacher and the student, but also peer to peer. Something that I remember very vividly from when my sister was in elementary was the amount of friends she had, that everyone was very welcoming. The students wanted to learn more about her, they wanted to include her, they wanted to make sure- they want to be friends with her, honestly. It wasn't about her disability, they just wanted to be friends.
Lucy Diaz:And I think that's something very important for everyone. Everyone wants to have friends. So I think it's very important in the classroom to foster relationships between students and also between teachers and students because that is where you're able to learn exactly how to accommodate for needs and how to make this person really succeed and really have the best education they can have, and that only comes from really knowing the person one on one.
Mihai Covaser:Fantastic. I mean, what an amazing episode! You all are some of my favourite advocates out there. You just have such a such a passion for it and so much knowledge to share. And I really appreciate you taking the time to share that with me and and with our audience. I'm sure that people will appreciate this episode. So thank you so much again for coming on. I really appreciate having you all!
Marco Pasqua:Thank you, Mihai. We really appreciate it. Yeah. No. This has been great. And, sorry if we were a little bit long winded; myself, mostly.
Mihai Covaser:No worries.
Marco Pasqua:I have a hard time keeping it brief, but, I really hope that everybody listening in gets something out of this.
Mihai Covaser:Yeah. Absolutely.
Lucy Diaz:Yeah. It's an honor to be here. Thank you so much for your time!
Payton Given:Thank you.
Mihai Covaser:You've just heard another episode of the community audio project Help Teach. I'd like to give a huge thank you to my other co-leads on this project, Payton Given, Maggie Manning, Élise Doucet, and Alexis Holmgren, all youth leaders at the Rick Hansen Foundation, who I'd also like to thank for their continued support in this initiative and others. My name is Mihai Covaser. I am your host, editor, and producer for this podcast series. Thank you to Every Canadian Counts and their #RisingYouth initiative for funding this project and for allowing us to put out our vision for change into the community.
Mihai Covaser:You can find all transcripts, episode notes, and links to other resources on our base site, helpteach.transistor.fm or listen to us wherever you find your podcasts. If you have any questions about the show or would like to get involved, now get in touch at helpteachpodcast@gmail.com. That's helpteachpodcast@gmail.com. Tune in next time for more great conversations and key takeaways that you educators can implement in the classroom today to make it a more accessible and inclusive place for all. Thank you for listening, and I'll see you next time!
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