Show Notes:
Inclusion and advocacy are not just words; they are actions that shape our world.

This interview delves into the importance of inclusion and advocacy, focusing on personal experiences and practical strategies. Tonya Wollum, the host, and Aaron DeVries, a passionate advocate for inclusion, discuss the challenges and rewards of creating a more inclusive society.

Aaron shares his personal journey as a parent of a child with disabilities, highlighting the barriers he encountered in securing inclusive education and services. He emphasizes the significance of parental advocacy and the need for systemic changes within educational institutions.

Tonya and Aaron explore the practical aspects of inclusion, such as physical accessibility, societal attitudes, and the role of educators in fostering an inclusive environment. They discuss the importance of universal design for learning and the need for accessible communication.

The conversation also highlights the benefits of inclusion for the entire community, fostering diversity, empathy, and a more equitable society. Both Tonya and Aaron emphasize the power of individual advocacy and the importance of collective action in driving change.

Overall, the interview provides valuable insights into the challenges and opportunities for promoting inclusion. It serves as a call to action for individuals and communities to work together towards creating a more just and inclusive world.

Connect with Aaron:

• 💻Website: https://theinclusivedad.com/
• 🎤TEDxUSD: Unlocking Inclusion for People with Disabilities:
  • https://youtu.be/WIc2UUmbyC4?feature=shared
• 🎤TEDxHoracePark: The Power of Inclusion:
  • https://youtu.be/5Fj4eIekHe0?feature=shared
• 🎧The Inclusive Dad podcast:
  • https://podcasters.spotify.com/pod/show/theinclusivedad

🧳How to Travel the World with a Wheelchair: Episode #60

📰 Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

👉 Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

• https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

---

---

Episode #106: The Power of Inclusion and Advocacy
Inclusion and advocacy are not just words; they are actions that shape our world.

(Recorded April 15, 2024)

Full Transcript of Interview:

Tonya: Can you imagine what it might look like if everyone around you felt valued, respected, and included? What would need to change for that to be a reality? I’m talking about no barriers for anyone where diversity is celebrated and differences are embraced. Welcome to the Water Prairie Chronicles, a podcast for special needs parents.

I’m your host, Tonya Wollum, and I’m glad you’re here. Today, we’re exploring the critical topic of inclusion and advocacy. Join us as we discuss the importance of creating a more inclusive society, the challenges faced by individuals with disabilities, and the powerful stories of those who are driving change.

Together, let’s break down barriers, build bridges, and foster a world where equity and equality are the norm. Back again this week is Aaron DeVries. We first met Aaron in our last episode when he told us about his daughter, Cece, and shared some of the stories of parenting a child with epilepsy and cerebral palsy.

Aaron, welcome back to Water Prairie.

Aaron: I’m glad to be back. Thanks for having me back.

So Aaron, today I wanted to talk about inclusion. It’s something that I bill myself as being an advocate for the disabled, but also trying to promote inclusion in the world around us. And when I saw your handle, It, it jumped out at me because I thought this is someone I want to talk to.

I want to find out more about what he’s doing. And so I’ve been, I’ve been really looking forward to having this conversation with you because it’s, it’s just, I, I hear parents talk about how inclusion is so important, but their child never really feels like they’re included. I’ve taught workshops on how teachers and professionals can use role playing to help teach inclusion to their students, their teammates into their classes, but it’s not something that seems to come easily.

There’s always this awkwardness where we’re not sure what we’re really doing. And I’ve kind of concluded that, um, I think a lot of our fears fit into this whenever we aren’t including someone like, like we, we, we feel good about saying that so and so is part of the crowd. They’re part of the outskirts of the crowd. They’re not, They’re not in there having that interaction and being full belonging of what they’re doing.

And, um, and so I’m, I’m curious where, where we’re going to go with this conversation. This is where we’re starting from, but, um, having shared that from my side, I’d like to ask you, why do you feel that inclusion is important to you?

I feel like I’m super passionate about it. I have it. I mean, I don’t know if you’re able to see that, but. I have inclusion tattooed on my arm, so I’m pretty much all in on inclusion. I just, it started for me when, um, Cece was sent across town to like a segregated setting and just subsequently realizing that wasn’t the only option.

And then it just became, I mean, as a parent, I mean, this stuff’s for me, it’s super, it’s emotional. And just, uh, for me, this injustice part of it, like, Why so many years after idea of the law was passed, are we still, you know, segregating people, not having them included just bugs me what in my upbringing or what in my, you know, my life caused me to get to that point, but it’s just not right in my mind.

So just that piece, a lot of it is. We don’t talk about, at least in our community, we don’t talk about stuff like this, what’s happening. I went to visit Cece when she was in first grade, I think, in that segregated setting, and kids were already, you know, folding laundry, and I was like, they’re in first grade, why are we already folding laundry?

I mean, why are they not in math class and reading? We’re already writing them off? Like, they’re not going to be able to do stuff? Why is this happening? So just, That part of it, we need to include them. And the way it’s supposed to work is when you have the meeting for the placement is you’re supposed to start in the general education setting and then work the other way.

In our situation, it seemed to be like Cece had all these ways she qualified for an IEP. So it just kind of jumped somehow to that segregated setting right away, which is not how it’s supposed to work. So just seeing the system not work the way Feel like it’s supposed to be working and, you know, gets that fire going that I want to help first of all, just talk about inclusion to get it out there and then, you know, help for my daughter, make it more, make it a reality as much as possible.

And then further, you know, kids get it, you know, have it for them too. I mean, once we started talking about inclusion, it’s not, it doesn’t just happen in our community where, you know, kids with high needs are, you know, excluded, segregated. So, um, just something that I’m super passionate about.

I’ve noticed too that sometimes depending on, and we’re talking about kids right now, but depending on the child, some have just a natural ability to be able to bridge that gap and to make friends and to, to be friends with kids in that regular classroom, however you want to call it.

Um, But when they’re being, when, when they’re part of the class, they’re part of the class and kids just champion around them. But you have other kids who are just really quiet and shy, or maybe they have a physical hindrance that’s keeping them from being able to join in with the others. And that’s, that’s the child that I feel the most passionate about because we need to help them figure out how to be there.

Either way, both scenarios, the way I’m describing it, It’s the child with the disability who’s having to do all the work to get into the classroom. And I’d love to see it so that our classroom is just stepping back and welcoming them with open arms. Any ideas of how we can help at those young ages, first, second grade even, to help all of the kids see each other as all of the kids and not just the kids?

I mean, I think a lot of it, I mean, it comes down to the adults in our experience, the district doesn’t see inclusion the way I see inclusion. So if you’re starting off already, at that point, it’s harder to get, you know, the inclusion, what I view as inclusion for my daughter, if that’s not even how they see it.

So a lot of it, it feels like adults, how they see the inclusion. The other pieces we have, I mean, I feel like, like universal design for learning, we need to, Start let’s make the curriculum start where it’s accessible for everybody at the beginning instead of this is our curriculum now. We have to modify it.

It just makes it harder and more work. But for Cece, I mean, she’s in a wheelchair. So once we started getting her into the general education, I mean, not every class has a desk in it that a wheelchair can go under. So now you have, you have that situation. Okay. On the IP, she’s in the room. There’s not a desk in all the rooms she can be under.

So now, I mean, she’s in the room, but that’s not inclusion. She’s just in the room. She’s not part of, like you’re saying, part of the class. She can’t have a desk. She doesn’t have a desk next to another student. She’s in the corner. Um, so there’s those pieces, like intentionally, like that should be a planning thing with the school.

I mean, we should have one desk in each room where we can at least, if there’s not a child with a wheelchair, we can at least adjust it if there is. So it’s not more of a What are we going to find a desk? Well, at some point, I think she had a table. She kind of was drug around with her by her para. Um, so she would, so, so, I mean, it just makes it harder.

Cause now she’s the kid going down the hall with the wheelchair. First of all, now she’s dragging, you know, a table behind her. I mean, it’s just a lot of, it’s just about the planning, like the planning and how to do it.

Well and you, you made a good point, the table or the desk shouldn’t be off to the side of the room.

It should be, if the kids are sitting groups of four, it should be one of those four so that, so that they’re there as part of it.

Oh, another story I have to share is like, she was, she was, she like, she loves music. So she was in choir. Um, when, whenever she was able to do it, so there’s like a older, I mean, adult choir in town.

So they have had like a Christmas, I think it was a Christmas concert. Her choir was invited to participate. Well, they had it at a historic theater in town where the. Stage was not accessible by wheelchair in order for her to be able to participate. We had to put a chair on the stage. I had to pick her up out of her wheelchair, carry her up onto the stage, put her in the chair and then get her back off the stage after they were done singing.

So I mean, even, even something like that. I mean, I understand you want to perform in that venue, but. You have a child that’s in a wheelchair. So how do you get them on the stage to participate without their parent having to carry them up there? How do you feel included when you’re, you can’t even get up there without somebody, your dad carrying you on the stage?

Yeah. And is, was there another way maybe they could have had the whole choir was backstage together and then they all came out together. It would have taken a little more work to get set up, but at least then during the performance, you’re not having to be the one that is carried up and carried back down again.

Yeah, no, no one, especially if she’s in her teens, no one at that age wants to have that type of focus on them. They want to be back giggling behind the curtain with the other girls. So, yeah. So, um, how, so, and I know we’ve kind of jumped into this, but it makes sense how our children who have a disability feel included and benefit from inclusion. How does the community around them benefit from that?

The more diverse in my mind, the community is, I mean, if we’re all the same, we’re all. I mean, look like me or act like me, it’s going to be boring. So just having that diversity, having other perspectives, I mean, she’s loves music, she loves saying hi to people.

Just she’s cheerful for sure. For me, like I get bogged down with like worrying about what other people care about me too often. And she, if she’s singing, she just. blares it out and doesn’t care about that. So, I mean, that perspective, a different perspective, I think, you know, she shares, um, for me, the inclusion piece in the community is big because I mean, I’m getting older, I’m not going to be around forever.

So, I mean, I feel there’s going to be a point where, I mean, I’m going to need some other people to help take, you know, look out for her, take care of her in the community. And then by her being in the community earlier on, people know who she is. They recognize her, comfortable coming up, saying hi to her.

Um, if she’s driving her chair into Walmart or something and, you know, there’s something in the way or whatever, helping her around the community. I mean, if I’m not getting her out of the house, out in the community, meeting people, getting them used to her, I mean, that’s not going to happen. So I feel it’s important.

And if, you know, as a parent, some days you’re like, why is, why do I have to do all this? Why is it so much work for me? But that’s, if I don’t do it, it’s not going to happen. So, yeah, you kind of have to just like, it’s not fair. No, but. It just, you just have to do it. And part of why I like to talk about inclusion, you know, it’s just people don’t, you don’t know what you don’t know.

I mean, I don’t, I’ve never had experience with any, you know, my child or anybody close to me, you know, having, I mean, like, uh, like cancer or diabetes. So I don’t know anything about it. I’ve heard the word, but I don’t. I don’t know what it’s like to, you know, go through that, live through that experience. Um, so I feel like part of it is just as a parent, I mean, I need to share, share my story, you know, explain that not every venue we’ve gone to see a music, you know, performance is accessible before we go, you know, to a concert, I check with the place to see what is it accessible?

Yes. I still ask that question, you know, in 2024, because not every place is so.

Right.

It’s just it’s just part of it. I don’t want to get there. And then we can’t get in because, you know, they don’t have a place way to get her in there. So it’s just 1 of those things that. Is it right, fair that I have to do it?

No, but you just, you just do it. Just, it’s just part of what you have to do. So, and by spreading the word of inclusion, I feel like, you know, bringing up, you know, a situation where it wasn’t inclusive. I mean, that just helps other people, you know, I feel like if they see something that’s not inclusive, they’ll question it or bring it up, you know, their business.

You can’t get a wheelchair in there easily or at all. How can we make this so it’s accessible for people in wheelchairs? I mean, that helps. People with strollers or walkers or canes and stuff too. So, I mean, let’s just, you know, get the word out there and spread, you know, that information.

I haven’t thought about this for a long time, but when my daughter, Emily was in probably fourth, fifth grade range, she, um, had a mission that she kind of gave to herself.

And that was to evaluate restaurants all around our area and, um, find out how accessible they were for the blind. And so, and what she was starting to recognize was if she went into McDonald’s or somewhere, she couldn’t read the, the menu. And so she was always going to have to have somebody read it to her, unless she could figure out how to fix this.

And, um, so, you know, as, as a child, her, her goal was, can I evaluate all of these and make a directory so that other people could see this and look ahead of time before I arranged to meet somebody, And then that way I’m not embarrassed. I don’t have to have somebody else have to read it to me. And so I took her wherever she wanted to go.

She talked to managers and asked them, you know, so if I came in, how would you handle this? And she was surprised that I think McDonald’s was the one that actually had it in Braille. So that was Braille. They had large print, they had picture, they had. pretty much everybody. Um, she went into a few places.

They had a large print menu, but unless you knew to ask for it, it didn’t exist. And if you didn’t get the right employee, they didn’t know about it. So it still didn’t exist because no one could get it to you. So, um, she never, never did much with it. And there’s other, there’s apps out there now and all this.

But, um, but it, it taught her a lot and also taught me a lot that it’s not just because things are available, doesn’t mean that it’s going to be available to the person that actually needs it. Because if, if the manager knows about it, like one place she went to, they had everything, but it was inside a sealed envelope in the manager’s office and they had, it had been there for months.

They’d never even opened it. So if a customer came in and asked for it, even if they knew it was supposed to be there, The person that’s taken their order has no idea that they even have it. So it’s, um, so it’s kind of interesting on that, but what you brought up was a good point that I remember now about that, that part of what she was trying to do.

She kept telling them, well, if I can’t read it, what are all the grandparents going to do whenever they come in? Because they can’t see it either. And she had a very good point. You know, it, it does benefit. And, and you, you just mentioned the same thing. We have an aging generation that’s going to need walkers and canes.

And, you know, even if they’re not using it, they need to have a safe way to walk so that they’re not tripping on a stair or something. So it does, it does benefit everybody there. The, um, the other thing I wanted to, to mention for our listeners, If you go back to last season, let’s see if I can see what number it was.

Um, episode 60, we had Kristin Secor on and she is traveling around the world in a wheelchair and she could have been set aside as not important, but even though she needs to have an aid with her and she, she’s needs help doing some of these things. She has a wheelchair and a ventilator and she’s traveling all around the world.

And now she’s leading groups, teaching them how accessible travel can be with modifications. She posts on how to get the accessible housing that you might need. How, how do you get your transportation and all? She’s contributing a lot to a ton of people. And not only just seeing her being able to travel, but she’s now saying, I’ll take your hand and show you how to do it.

And, um, and so Cece has just as much to offer, you know, what is, what is, what is she going to do to leave her imprint on the world around her? But let’s let her do it by including her in society and letting her be part of this. Yeah, so one thing I want to ask, so we talked about the wheelchair ramps and the stage issue, things like that, because especially these older buildings, doorways are narrow.

There’s, there’s a lot of boundaries there. Um, what are some of the biggest barriers that, that you’re noticing any others that are coming to mind besides what you’ve already shared?

I mean, we go for walks around the neighborhood. I mean, there’s still. You know, sidewalks that don’t have curb cuts. I mean, so you’re walking in a neighborhood, get to the end of the block and all of a sudden there is no curb cuts.

So then you got to backtrack. If there’s driveways, you can use those, but otherwise you’re going back or, I mean, to me also hit some of these, you know, residential streets aren’t very wide. So, I mean, you have to go on the side and then if she’s in her wheelchair, like going around cars and getting back over.

So it’s just, you just really have to watch for it. I mean, or there’s, you know, there’s parks that still don’t have, you know, handicapped spots in them. So if we. If there’s a lot of people there, there’s not like a, you know, designated spot for us to park and, uh, park in the van and stuff, which completely blows my mind because ADA was passed in like 90 or something, and we’re talking a long time ago.

So it’s still, I don’t understand it, but, um, those are, those are kind of the main things where it’s just more with her, the wheelchair accessibility stuff where it just. I mean, we went to, to listen to the music at a place we can walk from my house in town and you had to go through the building to go outside to get in the parking lot that was roped off.

And. You go come out the back door and it’s like a, I don’t know, like 6 to 8 inch drop to the thing. Well, the only way to get down there is they had to pull like this wooden ramp that they had somewhere else. Like you’re saying, they have, they have a way to get down there, but it’s not out there. Somebody had to get it and then it’s barely wider than the wheelchair and there’s a hole like in the middle of it.

So you’re like praying it doesn’t, you know what I mean? It’s just, how can we. How can we design this or build it so it’s accessible for everybody all the time? Like you’re saying, instead of it’s in the manager’s office or it’s in our storeroom. And what if this employee doesn’t know what’s even there?

Like, I can’t, she can’t even go, you know, participate in the music. So it’s just getting those, those types of things are kind of the main things right now.

All right. So before we, before we wrap up our, our interview part, I wanted to ask you about, um, to be able to, to give some advice to our, Our listeners and um, so listeners, this is our section where I’m going to give him some open ended statements.

He’s going to repeat them and finish them up for me. So the first one I have for you is the biggest impact we can make on creating a more inclusive world is…

The’ biggest impact we can make on creating a more inclusive world is loving our neighbor. Um, that to me is, um, a big thing. I mean, I grew up in church and that talked about loving your neighbor and just treating other people how you want to be treated.

Um, so I feel like if we treat others in the world, like we want to be treated, it would be more inclusive.

So one small step everyone can take towards fostering inclusion is…

One small step everyone can take towards fostering inclusion is, um, talking with people with disabilities to see how you can include them.

Um, so just talking to them to begin with, asking them, what can I do, you know, to help you, um, be more included. I asked this question to a, um, guy I know and. My town here who was also has cerebral palsy. I’m like Cece and he said, um, just if he’s out in the community, but get a restaurant, um, you know, ask him what he wants to drink or eat instead of asking the person with him because he finds that often, um, If he’s with somebody, they tend to ask the person he’s with, not him, what his opinion is.

And that’s also true for me. Uh, if we go to the doctor, um, you know, the nurse still ask what, what’s your name? What’s your birthday? Um, they often will ask like me or, um, Cece’s mom that information. She knows her birthday. So if they ask me, I’ll say, okay, Cece, what’s your birthday and have her say it. So just, uh, that’s, that’s a pretty big thing.

Just talking to people with disabilities and. Getting their input on how they want to be included or the things they come across.

So that’s it’s a really good point and especially those who are having to use a mobility device like a wheelchair Because unless they have one that lifts up where you’re eye to eye They’re down below you And, um, and as a society, I know I see that time and time again, that we literally look over them and talk to whoever’s near them.

And it’s, it’s not fair to the child, the adult, whoever it is you’re talking to. All right. So the last one is the future feels brighter when I see…

Uh, the future feels brighter when I see, um, people including Cece, my daughter, I’m just where I’m able to have her out in public and, you know, somebody is talking to her.

Yeah. Yeah. Go to church and, you know, she goes sits by somebody else and I can just kind of sit back and, um, you know, enjoy her, you know, having somebody want to talk to her, spend time with her, treat her like she’s just like she’s a person just like them. So that’s gives you that glimmer of hope that.

All the work that’s been done is worth it. And, um, she’s going to be okay.

Tell us a little bit more about The Inclusive Dad.

Uh, so yeah, I started The Inclusive Dad. Um, I love, um, inclusion. I’m passionate about it. So what I do is I do one on one, um, coaching with families, um, to navigate the special education process.

Um, that’s what I’m working on now. Um, I didn’t know anything about inclusion when Cece was born, learned a lot about it and, you know, learned that. Um, it doesn’t, it’s not fair and I don’t like it, but when you have somebody, as a parent, if you have another person there, an advocate, a coach, somebody with you, um, it changes the, changes the dynamic.

Um, I mean, the school seems in our, my experience, um, personal meetings for Cece and others I’ve been in, they just seem to be more on task, seem to be more respectful. Um, that part of it on and Cece, I think I talked a little bit about on the last episode, she qualifies under multiple categories. So the first meeting we went to, but I remember it was before ours, we went to her brother’s, um, like back to, you know, just the back to school meeting.

So it was me, um, my ex wife and my son and the teacher lasted 5 minutes, drop off your stuff. You’re out the door. Go to Cece meeting. It was me, Cece, my ex wife, and at least 10 people, 10 school staff on the other side of the table. Um, so there’s just this, for sure, like, um, you know, children with needs, like my daughter, there’s just the power imbalance just implied is, you know, So just, I like to help families navigate that process, whether you need, uh, you know, help looking at the IEP seeing, um, if you just want input on the IEP can help with that.

If you want somebody to attend a meeting with you also, as a parent, I mean, you’re hearing a lot of stuff. A lot of it, at least from my experience is not. All positive, so it’s emotional having somebody there also, you know, to help listen, catch things, ask questions that you need to, you know, ask. Um, so I offer just one on one coaching.

I also have a monthly membership. Um, different levels of that, um, what’s included in that is like a private membership group, um, where you have access to, you know, ask questions, um, get information, um, then, then you get like a, you get a 15 minute call with me a month, um, included in that membership, just if you have anything you want, have questions about, need to work on, um, we can work on it in that time, uh, once a month, networking calls, so just once a month on zoom where we schedule and just, you know, meet with other parents just to get to know each other.

Okay. Find out, you know, what other things, what you get going on in your life, uh, once a month question and answer calls. So that one’s more focused on, you know, if you have questions, um, that you looking over the IEP, you have a question about something you can, you know, bring that, um, I’ll help answer it.

Other parents can, you know, Hey, yeah, we went through this. This is how we handled it. Here’s a resource that part of it. Um, access to live webinars and recordings and then discounts like on the one on one coaching. If you need more, um, coaching, uh, the next level that includes more, it includes like more hours of coaching.

So, you know, you have more of a complex, um, need more than just the 15 minute call a month or those other calls. Um, you can add stuff to that. Like my daughter or Cece’s. I mean, we had evaluation reports that were probably 75 pages. I mean, we had IEPs that were 30, 40 pages for our IEP meetings. So some of our stuff got pretty intense.

So I just want to be there, help other families, you know, through that process. Big picture. I mean, I want to make the whole. society world more inclusive. Um, so trying to figure out how to best tackle that part of it. Haven’t figured that out yet, but I’m just, just the awareness piece. Um, I’ve given one TEDx talk on inclusion.

Um, well. Two days from now, I’m doing my second TedX talk. So that will be probably out there maybe before this is this episode is published. But so yeah, just getting out there and spreading my message.

Well, Aaron, I’ve enjoyed this. I enjoyed, um, hearing about your story last week. Um, hearing more about just talking about inclusion.

I think the more that we talk about this, the more other parents will realize that they do have a voice, not only just for their own child, but for reaching beyond their family and helping for that next generation, even coming behind us. So thank, thank you for sharing this and joining me for, for both of these episodes.

Yeah. Thank you very much. I really enjoyed it.

Thanks for joining me today. I hope this conversation has inspired you to learn more about inclusion, advocacy, and the power of individual action. Be sure to visit our Etsy shop for creative writing resources that foster empathy, understanding, and a love of storytelling.

Our offerings include creative writing journals for kids, interactive story kits, and digital downloads for teachers and homeschool parents. By supporting Water Prairie, you’re not only investing in quality educational materials, but also contributing to a more inclusive and compassionate society. Visit our Etsy shop today at https://waterprairie.etsy.com. Be sure to join me for the next episode with my guest, Mary Harper, the author of the book, “The Sound of Her Voice, My Blind Parent’s Story.” Her parents were successful adults who found genius ways to work around the discriminations of their time period. And I think you’ll enjoy meeting Mary.

I’ll see you next time.