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Episode 13: Behind the Scenes with the CPGU Crew
167 Plays9 days ago
That's a wrap on season 1 of Cerebral Palsy Grows Up: The Podcast!
This is a little peek behind the curtain into the CPGU crew. Who we are, what we've learned, and what we're looking forward to.
Cerebral Palsy Foundation on Instagram: @yourcpf
CPGU on Instagram: @cerebralpalsygrowsup
Follow Emily on Instagram: @emilyladau
Follow Lawrence on Instagram: @lcarterlong
Credits
Host: Alexa Orban
Executive Producers: Ashley Harris Whaley, Rachel Byrne
Producers: Katy Gaastra, Kyle Khachadurian
Graphics: Briana Raucci
Recommended
Transcript
Season 1 Reflections
00:00:09
Speaker
Welcome to a special episode of Cerebral Palsy Grows Up, the podcast. Today, we're sitting down with the CPGU team, Ashley Harris-Waley, Kyle Kashadurian, and Katie Gastra to reflect on season one. We'll revisit the moments that define this project, explore what we learned, and talk about where we're headed next. Let's get into it.
Meet the CPGU Team
00:00:29
Speaker
To kick off the conversation, I'll have Kyle, Ashley, and Katie introduce themselves and their role with CPGU.
00:00:38
Speaker
My name is Kyle Cachadorian. I am a producer here at the CPGU podcast and I do social media for the Cerebral Palsy Foundation. Hi, um my name is Katie Gastra and I'm a digital strategist here at CPF. And on the CPG side and helping with knowledge translation and also co-producing the podcast. So whether that's in naming and branding the show, writing any of your questions, or just thinking about themes for next season, essentially just do whatever the team needs to help the show move forward.
Team Insights & Dedication
00:01:11
Speaker
I'm Ashley. I'm the director of adult programs at Cerebral Palsy Foundation, which means that I lead the CPGU project. And for the purposes of the podcast, help Kyle and Katie produce it as well. Yeah. And Ashley, you've been a driving force the behind CPGU. I'd love for you to tell our listeners one thing that you wish people knew about the work that happens behind the scenes.
00:01:37
Speaker
Yeah, so I've been working on this project ah since its infancy, and well i feel and I still feel like it's it's very new to the world, but almost three years, which is kind of wild, um I'm going to cough out, and I'm going to say two things that I wish people knew about the work. One is I wish people understood like how small and lean and efficient our team is ah both in terms of CPGU as a project but also just the foundation as a whole. um We accomplish
00:02:18
Speaker
An absolutely mind-blowing amount of work with a really small, really efficient and dedicated group of people. And that kind of leads into number two thing that I wish folks knew is just how much we all care ah about the work that we're doing.
00:02:39
Speaker
how important it is to each of us and how invested we all are in it and I really hope that that comes through in what you all are seeing. I think it does and I hope it does.
00:02:55
Speaker
Yeah, I think the sentiment of Nothing About Us Without Us is truly the heart of this project because it's by adults with CP, for adults with CP. And it's just really made it morph into what it is today, especially on my side with the podcast. um But there's so much that has led up to even where we've gotten to today.
Surprises & Collaboration
00:03:17
Speaker
And I know, Katie, you've played an early supporting role to help this podcast come to life.
00:03:22
Speaker
Can you tell our listeners something that surprised you as this podcast started to come together? Yeah, definitely. Well, I think I just want to call out the fact that you know all of us here on this call today, we all have cerebral palsy. um So I think that's worth mentioning to our listeners. It's implicit in the work that we do. um and But I think what surprised me most about just getting this show together was, one, how well that you fit into the role of our host. um I think it comes really naturally to you.
00:03:56
Speaker
um But also just kind of to point to what Ashley you were saying is how collaborative we are as a team and I think how well we work together and how easy and fun it is to work with
Community Feedback & Storytelling Impact
00:04:06
Speaker
you all. Yeah, when this project started to come together, I honestly was so surprised to see how quickly we were able to just mobilize and get guests and have so many people have just excitement around this because when people are bringing stories together, I don't think that they have enough of the platform to be able to speak their story and to talk about really what they'd love to add to the world, especially from a CP perspective. So to have an audience where that's the goal and that's the education, um it's been really amazing for me to just hear feedback from the community to say, oh my gosh, that conversation just changed so much of what I thought about my own cerebral palsy.
00:04:47
Speaker
um And I know with this project overall, that's how a lot of us have connected is by hearing other stories. And now we're able to actually have a place for people to go. But I think like just beyond that, people that don't have CP are able to come here and just learn more about disability broad um and life as adults with CP.
Unique Guest Insights
00:05:10
Speaker
um But I definitely think I'd love to just switch into just some of the great conversations that we had too, because these stories were so great. um And I got to spend a lot of time with Kyle behind the scenes. So during every episode, um Kyle is there behind the scenes with the guest. um And so we have some great pre show and post show conversations, some of those pieces that I wish we were able to air but You and I have definitely spent the most time behind the scenes together, Kyle, and I'd love to know what's something from this season that you're still thinking about, even after the mic's turned off.
00:05:45
Speaker
I think for me, it was twofold. Like a very specific example would be the that Anner's episode was just so human. It was almost not quite about CP and yet it really was too. But the thing that really like that I remember most from doing all of these is that even though I'm one person with CP who knows a ton of people with CP,
00:06:07
Speaker
Despite all that, I learned something new from every single guest, and it really, really hammers home how individualistic having cerebral palsy is, despite us all knowing a bunch of people with it. They were also all perspectives that I hadn't heard before, um so that was very nice.
00:06:24
Speaker
Well, what I love about our community is the differences of stories that we can bring. Like, even if somebody has hemiplegia like me, there's still so many differences in how we move through the world, different ways that we adapt through the world. um And to just be able to talk to other people that may have diphlegia or quadriplegia, like they're able to just bring so much to the table from their perspective.
00:06:49
Speaker
But also just learning things. um I always bring this one up as like a biggest learn that I i got from connecting with the community is the startle response. um And I see that all the time that people post that they didn't realize that this was something that happened with CP. Like it's one of the most common pieces that I see over and over again. um But like it's all those little tidbits that I've learned throughout the season that I've really even started to shape how I move through the world with my CP and how I talk about it because I've now been able to talk to just so many members of the community. um And I think for all of us, as we've listened or been on episodes, I'd love to know if there was an interview or a story that shifted your perspective um on CP.
00:07:33
Speaker
Yeah, i'll I'll jump in. um You know, it's fresh in my mind, but Ava Walls' episode, she spoke a lot about you know how her CP impacts her and kind of her experience growing up in Ireland with cerebral palsy. But one thing that really struck me, and one thing I don't think that we've spent a lot of time thinking about, or maybe me, is that cerebral palsy is a whole body condition that should be treated as a whole body condition and so you know I have left hemiplegia and I've always kind of stuck with that mentality of like it only affects my left side but here I am dealing with like right shoulder neck ah shoulder and neck pain and I I think I'm kind of coming to terms with the fact that CP does impact every limb and every part of your body even internally and And I think moving forward from just a medical perspective and your own understanding of your disability, it's really important to acknowledge that fact.
Connecting Narratives
00:08:34
Speaker
And it's a really great bridge to Katie into that this project isn't just about the podcasts and the stories, but also going into these clinical guidelines that are coming out from the CPGU project. um And also just you know more research and more physicians who are going to be able to support the community because that isn't something in scope. And a lot of us, when we're going to physicians, we're educating them on our each individual cases. um So that's just something that's so important to call out.
00:09:05
Speaker
Kyle, I'd love to know a story that shifted your perspective on CP. This is probably mostly because it's top of mine. It's because as of when we were recording this one, it's the most recent episode, but I don't know any dads with CP. So hearing Dom Kelly on the Parenthood episode was really cool because I want to be a dad. So I just loved hearing him.
00:09:24
Speaker
That episode honestly was one of my favorite episodes to host. um And I tell Ashley this all the time, like I will be texting her in that season as I enter upon it too. yeah you You're welcome to. I think also that made for a really nice episode because the conversation flowed very well and was just very effortless feeling. And it was just nice to, but it was nice for me to also experience that camaraderie. Y'all don't know me. Parents would see people, guess what? ah Neither do I. So it's you know not very often that I get the opportunity to commiserate with someone who does have a pretty close shared experience to what I'm living.
00:10:10
Speaker
I don't know if shifting my perspective is the right way to look at this episode, but the one that I think resonated with me the most, well, that they all have on some level, but the one that I keep thinking about over and over again um is Jay Kim's episode. I'm a speech pathologist by trade, so I love it when the i I get my like little nirvana of speech and CP crossover episodes. It's like my favorite
00:10:45
Speaker
I think that episode, well clearly from the engagement on social media and the listens to that episode, it also really resonated with a lot of other folks. I think there are portions of our community that are often not as well represented as others. And one of the big glaring omissions often from rooms and tables where CP is being talked about and being discussed is the voices of folks with CP who have impacted speech, particularly if they use communication devices. And I think, you know, I know this both from my CP work and my work as an SLP, for whatever reason, like we all experience ableism and experience people sort of downshifting their view of our humanity ah based on our disability. But for some reason,
00:11:41
Speaker
If someone presents with impacted speech or if they use a communication device, people really, really just automatically sort of treat that person like a sub-human being or like a lesser human being, which first of all is unacceptable.
00:12:00
Speaker
But I think that it partly is is because of lack of representation and a lack of opportunity for folks with CP whose speech is impacted to share their voices and to speak up and to be involved in really critical and important conversations.
00:12:19
Speaker
Jay is brilliant. She's a brilliant person and she has so much to share with the world and so much to offer the world and
Challenging Biases with Representation
00:12:29
Speaker
we all know that, of course. But I just love that people far and wide, whether they have a direct connection to CP or not,
00:12:39
Speaker
have the opportunity to not only see how brilliant she is as an individual person, but hopefully have some of their own internal bias and stigma around impacted speech be challenged in a pretty big way. So that's the one that I think is it kind of its impact is kind of transcendent um in ah in a sort of a bigger picture way. I think what really struck me about her episode too is i what I took away from that is you know she mentioned we place so much emphasis on walking and talking as a society. And I think you know between having access to so many mobility tools,
00:13:23
Speaker
now and so much amazing assistive technology for communicating. I just think she kind of proves it like that's just not always the case and we shouldn't really be putting so much focus on meeting these milestones in a very specific way as we age.
00:13:40
Speaker
um because that's all going to change for us anyway. So you might as well kind of come around to it a little bit sooner. It is. And I mean, that's even Ava brought that up in the episode as well. that That is really the standard. Like if you are walking, that is like the gold standard of what you can do as far as mobility, but it should be, you know, a standard to just move in the ways that work best for your body. um And I think it also brings up a piece of just how dynamic CP is too. Like some days I don't need my AFO. I don't need to wear a brace, but I can say that on the flip side where maybe if I did, then the next day it would be easier ah to be more mobile. And so, um you know, there are definitely days where I rely on my assistive tech.
00:14:29
Speaker
And it it's not always something like an AAC device. Like it can be something as simple as, you know, a spoon or a fork or your brace, orthotics. And that's something that really comes into play. Like I've kind of found this mobility toolbox that I've built myself, but I'm also learning from others throughout this season of things that they've done for their mobility um and tools that they've used to move through the world. and One of the episodes that did stand out to me with that too was Ted Conway, and just talking about his mobility and just where he's gone. I mean, as far as adults that we've spoken to, he's probably the oldest person with DP that I've been able to connect with. And so to see like in the progression of as I age as well, what life might look like and the things that you know we have to expect, he gave just such a great perspective.
00:15:20
Speaker
um especially on mobility and just things that have changed as he's aged 2. I'm glad we're talking about this and I am going to go like, oh I don't know, off our script just like a tiny little bit. But I, I think one of the most sort of compelling things about this whole experience for me is being able to see, because with the exception of Ted, most of the folks that we've talked with are around, around-ish our own ages, right? So thirties.
00:15:54
Speaker
And I think one of the coolest things for me has been able to see how we all in our own unique ways have sort of grown into ourselves. um And I think that looks like a lot of different things that have come up thematically, you know, across this podcast. but I think it's worth talking about for a second because the project is called CP grows up after all. um But one of the things I'm thinking about as y'all are both talking is Ava's episode and she's talking about the the question of walking and how walking is established um as the gold standard and how, you know, as we all
00:16:37
Speaker
have grown up as particularly when we were disabled children, we're all raised under a framework of independence. Whereas most of the population is afforded the luxury and consideration of being raised under a framework of
Embracing Interdependence
00:16:53
Speaker
interdependence. And this is something Kyle and I have talked a lot about for, I don't know, probably like the last 10 years. The whole time. Yeah.
00:17:01
Speaker
But, um you know, it's been cool to listen to all of these different perspectives. I think a theme that I saw come up over and over again ah related to different things, of course, was like a little bit of shame and apprehension around mobility devices, assisted tech, asking for the things we need, ah utilizing the tools we need to make our lives better, to make our lives easier, taking up all the space we need without a second thought. like I've seen those themes across all the episodes of how we have all managed
00:17:44
Speaker
to navigate not only the reality of living as a disabled person and growing up and coming of age and figuring ourselves out, but also like how to sort of shed that inhibition around getting what we need, using what we need, saying what we need to say, asking for what we need to live the best lives we can. And I'm just really proud of us for cultivating that skill because I think it's going to be so critically important
00:18:16
Speaker
as we age. And I think everyone has to experience that as they age. CP or not, but we're actually in a at an ad advantage this time because we're kind of already learning how to do it. We've been learning how to do it our whole lives, right? So it's just like yay us, go us for like self-actualizing and being like, yeah, you know what? No, like this is just how it is. And I'm going to do what I need to do, say what I need to say, and get what I need to make my life as full and robust and easy as humanly possible. ah This has become a little bit of a ramble, so we don't have to keep all of it. But like, really, they'll go us. That's the, that's the takeaway.
00:19:08
Speaker
You know, Ashley, I just want to tell you, last time you said that was in your own episode, I kept every word, and it was all very good. Well, we'll just see what happens. We'll see what happens. But I did notice those themes, like every single episode, be it about one thing or another. Yeah.
Empowerment Through Community Stories
00:19:27
Speaker
That's worth thinking about, I think.
00:19:31
Speaker
A big shift for me was getting to go to Cerebral Palsy Strong's um CP Social this fall and hello being able to also shout out to Katie, thank you so much for creating that and hosting that event. But it really changed my perspective hearing not only the stories of everybody through this season, but being in a room of pete ah people who have you know just so many different cases of CP and hearing their stories and being able to connect. What I realized, Ashley, is that when when we actually get to talk about our stories, that's when we become who we truly are. And for a long time, like I hid that piece of my story that I even had CP and I would try to move throughout the world like I didn't. That's so interesting. I've never once.
00:20:24
Speaker
yeah I mean, I think we are split down the middle. For those of you who don't know, we're 50% ami-plegic, 50% di-plegic, on this call, by the way. yeah <unk>s just i I am so intrigued every time I hear someone share a similar perspective to that.
00:20:44
Speaker
not a single day in my life for better or worse, you know, that comes with its own set of things to unpack, not unlike you're doing, but it's just so funny. Like we are all so much the same and so different at the same time. Yeah.
00:20:59
Speaker
And so to be able to come together and hear that, right like yeah other people that just hadn't felt like they could share or they felt like they couldn't ask for accommodations, these are all pieces in my personal story that when I did start to share about my CP, I finally was like, okay, like this is who I am. It gave me more confidence.
00:21:21
Speaker
to talk about who I was. And when I was in that room or in these rooms virtually, like a big thing that I always leave with um is that I want to say to everybody that I connect with, like, this is our community that helps us lift each other up. um And for a long time, I felt alone like I didn't have a community.
00:21:40
Speaker
um But I think a big piece of this project, social media, being able to actually meet up with people with CP in person, like we gain that community where our voice only grows stronger. um So I think like throughout this season, I just felt that theme of people feeling like, well, it's a sigh of relief that we get to talk through all of these topics.
00:22:01
Speaker
of something that they probably hold in all the time. like I know for myself, it goes but between, like am I talking about my CP not enough? Or am I bringing it up in conversation too much, even with friends who have CP? um So I think it's just great to like give people a platform and know like you should share your story and share that major piece of who you are.
00:22:23
Speaker
Yeah. I mean, just to kind of maybe summarize that close up this thought, I don't know, but I think it can be really freeing to just allow yourself to move through the world.
00:22:37
Speaker
without that sense of shame or questioning what people are going to think about you. And and it takes a lot of self-acceptance work, right? Like we didn't just get here, we're in our 30s and I could not have said this about myself even five or six years ago where I was so comfortable to come on a podcast and talk about having CP with several other people with CP. But I think, you know, I use a mobility aid called the exosim. And so when I'm out in the world, people see me and my disability has become in some ways more visible. And I think that has kind of given me
00:23:19
Speaker
license to just accept this is the way I am. Yeah. Anyways, it's just, i I'm thinking about who also, thinking about who might listen to this, right? And it's like younger people with CP, like our peers. And I think what what did I need to hear 10 years ago too? And I think it is just the the fact that it's okay to move the way that you move. It's okay to talk about your disability in terms of it being a disability.
Transcendent Storytelling
00:23:50
Speaker
um You know, don't shy away from calling it cerebral palsy or not sugarcoating it because this is how you're going to be the rest of your life. Ashley, I really want to know if there was any moment during the production of the podcast or just throughout this project where you thought, this is why this project matters. And I'd love to hear one of those moments.
00:24:14
Speaker
I can't think of a single like watershed moment for me really but I have had sort of this one thought running on a loop as this um podcast has trucked on and I think it's what we're you seeing is everyone loves it and i I love that like everyone is clamoring to be involved like it's just I I'm so happy with how well received it is but I think the
00:24:49
Speaker
the love for it and the way it resonates with folks really goes up a notch when we are able to sort of move past i' just sharing our own stories or whatever we want to call it to really being a little bit more transcendent thematically and really driving home a greater point or a greater theme. I think that's one of the reasons Ava Wall's episode resonated with so many people as it did is because she was able to take her own personal narrative and apply it to something larger beyond her own self.
00:25:34
Speaker
And for me, like not that any level of personal narrative isn't important because of course it is. But if you're able to move even one step beyond that, apply it to the bigger picture and have like really strong added value for your audience and your listenership. like That's the good stuff right there. It's not just focusing inward, but being able to kind of flip that around and apply it outward and add value
00:26:12
Speaker
beyond your own self. And I think we saw that several times across several different episodes. Ted's episode, also a huge example of that. Zach Anner's episode, the humanity just radiates off that man. um You know, we saw that over and over again. And I think that for me is is a pretty big deal.
00:26:35
Speaker
And those conversations are where I felt like we were able to just go beyond what we thought we were going to talk about. I mean, there were so many times that I had a trajectory or questions that I thought we were going to cover everything. But once you start chatting with somebody, once you start to get to know them, you're like, wait a second. And I'm peeling the onion like in ah such a different way and in such a way that I'm getting to know this person.
00:27:02
Speaker
Um, and the ad value that I've seen from that, like in every interaction has gone tenfold. So it's a really cool perspective there too, Ashley. Well, now we've wrapped season one, um, which I can't believe and just time perspective too, which I think is important. Like this project started over six months ago now, right? Yeah. We recorded.
00:27:27
Speaker
uh just so you'll know the a lot of the episodes in the summer and early fall um so this has been going on you know the back half of this year and we're really really excited to look to what um to kind of evaluate and think about what we do the same what we do different what we've learned and think about season two so Yeah, get ready. I'm excited for it too. I'd love to know from each of you a cliffhanger unresolved topic that you'd love to dive into for season two. Oh, I don't know if it's a cliffhanger, but
00:28:09
Speaker
I've gotten a lot of feedback on the parenthood episode um and I think sort of a compliment to that is interest in not just parenthood but pregnancy and women's health and family planning and sort of you know that's not an easy thing for any person to navigate really but when you're disabled that adds like a whole another layer to it. And I have gotten, you know, both interest from like CPGU and then also disability reframed. Like people are really interested in the conversation of like pregnancy and disability and women's health and how we are navigating those different pieces. So I think that, um, could be a nice fit for, for parts of season two. Yeah.
00:29:02
Speaker
That's my number one episode that I would love to unpack more. we I think we could have made that episode four hours long. so know Maybe we will. but We like the rules. So, you know.
Future Topics: Disability & Family Planning
00:29:13
Speaker
Well, I think that's what's so exciting about this podcast as a whole is I i think.
00:29:19
Speaker
you know, how are we conscious or not this was like we're having the kinds of conversations that we needed for ourselves and our community and um elevated the topics that we care about. And I think that's something exciting that we can look forward to season two where We'll really love to center conversations around managing health care for adults with CP. That's what this project is all about. So we'll look to um elevate themes within the clinical practice guidelines and all of those health care domains that CPF has identified with with feedback from the community through surveys in the last couple of years. So that's kind of a little little preview for for what we can look ahead to next season.
00:30:04
Speaker
Yeah, I'm looking forward to unpacking that next season as well. Kyle, I'd love to hear your thoughts. You guys had such great answers. I'm just going to say I want to meet a J. Kim part two. I could listen to her talk about anything for hours. She is a rock star.
00:30:22
Speaker
Yeah, I agree. Well, we should take notes as we are now in this conversation. um And I think definitely connecting them to the guidelines, like this is something that I thought um often when we're talking with each other, just as people with CP.
00:30:38
Speaker
healthcare care comes up in our conversations, I feel more often than I ever talk about healthcare with anybody else in my life. 100%. In my life. um It's just natural. um So to be able to like actually sit down and have these conversations, it opens doors for things people might not want to bring up and to feel less alone. So we felt that on the personal side this season, that now like in this upcoming season to have the focus,
00:31:05
Speaker
of the clinical practice guidelines, I really think it it's gonna be something that's exciting um and also so informative for people that have all these questions that probably circle in their brain every day, like me.
00:31:18
Speaker
Yeah, and I think it's ah a big value of that is gonna be sort of giving the audience the opportunity to come along with us as we sort of shift the perspective to CP as something that impacts the entire body and the whole body system. Because that's what these clinical practice guidelines are all about. It's not just about orthopedics or musculoskeletal care, like it truly is looking at the entire human body and how all those systems work together and how CP does have an impact of varying levels, you know, across all those systems. So I think it'll be a really cool opportunity to like bring people into that perspective and share that with others so that we can get the healthcare we deserve because that's what this is all about, right?
Community Involvement in Future Seasons
00:32:13
Speaker
Before we wrap up, is there anything that you guys want to add to this episode?
00:32:20
Speaker
I think I do have one note. um We've gotten an enormous amount of feedback ah from the community about this podcast and a very large percentage of that feedback has been folks asking if they could join the podcast for an episode. They could guest for an episode. Kyle, would you say, I would say it's been at least 30 requests. Easing.
00:32:47
Speaker
Maybe like more towards 40 or 50 and I'm like, I am prone to exaggeration. That is not without a hint of exaggeration. That ain't one. Like it's a lot. And I just want to say that we are thinking about season three. We sort of have season two thematically already planned out, but season three, we're thinking about ways that we could include our community.
00:33:15
Speaker
beyond just sharing a personal narrative. Kind of going back to what I was talking about earlier, about being able to take elements of that personal narrative and apply them to a broader theme and a bigger picture. So all of that to say, we're still very much figuring out season three. Stay tuned. We may have a guest application process of sorts.
00:33:44
Speaker
so That's my ad. Well, I think, too, in the meantime, it's worth mentioning that if you're watching one of our clips on social media, ah feel free to leave your comments with topics you might want to hear about or guests that you might want to see on our podcast, even even if that's yourself. I just think it's it's really were worthwhile for us to hear kind of what you're liking about the podcast and what more kinds of content you're looking to hear about.
00:34:13
Speaker
Yeah, that's definitely why we're here and creating what we
Gratitude & Future Anticipation
00:34:16
Speaker
are. um It's been such an honor and so much fun to be the host of this season. um I'm looking forward to so many more conversations, hopefully with all three of you as well. um And we're just looking forward to more of these conversations that are truly changing the day to day for a lot of people. um I didn't realize how much this podcast would affect my mental health um and just my life. And so um it's just a testament of coming together as a community. And I think that's really truly what we're doing. So thank you all for making such a successful season one. um And we're looking forward to season two. So stay tuned.
00:35:00
Speaker
And thank you to you. Like you, you're a star. Like, don't, it ain't just these three. Like, yeah. Honestly, we couldn't, we couldn't have done without you. Um, yeah. Look, quite literally. Couldn't have done it without you. Thank you. All right. It honestly has been the highlight of my year to be able to do this project. So I love that.