When Russ Ewell's son was born with Down syndrome, he didn't know what that meant at first. But after talking to the doctor, he realized that it didn't really change anything about what he wanted for his son. He just wanted his son to be included in everything he did. And so when his son was old enough, they joined a local sports group. But they were surprised to see all the kids with disabilities separated into their own group.
And as they walked to their first activity,
we're seeing his friends who are typical. Now, he's not going to be with them. And I was like, this isn't how I did it. So we did it. We went through it. And I remember after about six weeks, I was driving my van. And my son was in the back and I looked at his face, he wasn't smiling. I looked at my face, I was smiling. And I was like, this is not we can't do this. So I said, I gotta figure something out.
Bottom line, Russ didn't want his son to grow up without typically developing friends. Unfortunately, people with disabilities are still segregated in many spaces, including sports and school.
That's why we need inclusive leaders to make change. And Russ Ewell is going to tell you about what he did to make a change in his community.
My name is Tim Villegas from the Maryland Coalition for Inclusive Education, and you are listening to Think Inclusive, our show where with every conversation, we try to build bridges between families, educators, and disability rights advocates to create a shared understanding of inclusive education and what inclusion looks like in the real world.
You can learn more about who we are and what we do at mcie.org.
For this episode, I speak with Russ Ewell, founder of E-soccer, and Digital Scribbler, CEO of Hope Technology Group host of the Lead Different Podcast, and father of children with disabilities. We discussed the characteristics of an inclusive leader. And later in the interview, he turns the tables on me and asked me some questions about why inclusion is important to me. Thank you so much for listening. And now my interview with Russ Ewell.
Well, it's a pleasure to have you on Russ. And yeah, the last time we you know, talked. You're talking about your journey with your family. And you know, the creating E-soccer and inclusion is important to you.
Yes, absolutely.
Yeah. Why don't you tell us why inclusion is important to you.
I was thinking about our, you know, our last talk, I was actually, I remember, I was in my garage when I was talking to you on the phone. And it was man, now I'm sitting in, we got a little studio here we use for all of our stuff. I'm older. So in 1991, my first son was born, and we were in the delivery room. And it was all normal. And then he was, you know, my wife gave birth and we're sitting there, she's laying down, I'm standing there. And it's been a medium long labor. So you know, we were tired. But the attending came, our doctor wasn't there. The attending came in and she looked up and said, Now you do know your son has Down syndrome, right? And she said it like I should have known that. And I was like, No, my wife instantly knew what it was. But believe it or not, I had never really consciously been aware of Down syndrome. But I was like, Okay, what, what does that what does that mean? And, and he had to, you know, they did everything you do with babies and they said let us call a doctor to come in and talk to you. And it happened to be his name was Dr. Sal. I'll never forget it.
And he came and talked to me and he looked at me and he said, Okay, I want to talk to you about Down syndrome and your son. He said, You know, I was eating dinner with my family. And for some reason, when the call came out for someone to talk to you, I decided I'd take it. And I was like, Well, this is a serendipity for which I'm grateful, I think because he's the head of genetics, not just you know, a doctor, and he said, I want to tell you a couple things, Russ, before I explain too much. You don't have a Down syndrome baby. You have a baby who happens to have Down syndrome. And that framed my view of life from 1991 on.
We went to, this is in California now, we went to the place where they're holding it. And all the teams are out there. And you may remember when you were young and everybody goes to the field, they're signing up, they're getting registered. And so I walk in, I don't know where our team is. So I asked couple guys to go, oh, that group is around the corner. So I ended up walking with my son all the way through all the typical kids. And the walk felt long, although it was probably short, right? It felt long. And we finally get to this corner in the back. And that's where all the special needs kids are. And of course, I'm sitting there going, this is not my idea of a great time. Because as we're walking, we're seeing his friends who are typical. Now, he's not going to be with them. And I was like, this isn't how I did it. So we did it. We went through it. And I remember after about six weeks, I was driving my van. And my son was in the back. And I looked at his face, he wasn't smiling. I looked at my face, I was smiling. And I was like, this is not we can't do this. So I said, I got to figure something out. And I read an article that was talking about soccer. And again, this is the 90s. And it said that soccer is a global sport. And America's not really in it at this time. But the odd thing about it is soccer is a eye to foot coordination sport. Whereas baseball, basketball, football are more hand to eye, and hand to eye is more difficult. So it's surprising that and we all know that we're older who played kickball that that was something everybody could do, right? So I read it and I went, Wait a minute, maybe I need to get my kids in the soccer. So I had about six friends that the time and I think I've told you this in the past. We talked about it. And they said, Yeah, we could do it. And that's how E-soccer started. So why is inclusion so important to me? It's important because I didn't want my son to grow up and be an adult like he is now and not have typical friends. He's been on double dates. In fact, Nathan, one of the, my producer, is one of my son's friends who's been with him since they were eight years old. And so I want that for every kid. I want every kid with special needs to feel like when I go to an event, I'm not walking to the back. I'm not the exception. I'm part of the whole experience. And it's been fantastic.
Unfortunately, the story that you shared, you know, people are still experiencing
segregated spaces in sports. Not only sports, but in school. Right?
That's right.
That normal typical process of, okay, we're going to sign up for school, we're going to sign up to go to first grade, you know, we're going to sign up together and play T ball. You know, that experience is different if you have a child with a disability, and it shouldn't be. It shouldn't be.
So something I really, that we don't talk about a lot on this podcast is about inclusive leadership. And I'd really love your perspective about what you think it takes to be an inclusive leader. What kind of characteristics should you have? Or should you be striving for? To be an inclusive leader?
That's a great question. I mean, phenomenal. And I'm still working on that, because I don't think that's my, my origin. You know, I was when I grew up, I learned, you know, sort of that command control leadership. And mostly, you know, I want to be the center of attention. And the star of the show, I didn't want to serve anybody, I wanted to serve me, and if helping other people help me look better than I would do it, but I wasn't really into helping people. And then when I was about 19-20-21, is a combination of getting more mature, though I wasn't there yet. And being exposed to to spiritual and philosophical thinking in college that I hadn't really been exposed to started to make me aware, I was sort of a person who suppress my emotions, and, and some of that stuff from growing up some family dysfunction and stuff like that. And just being a boy who was, you know, too afraid to be vulnerable. I tell you that because I think part of the experience of becoming an inclusive leader is a personal journey of being willing to be introspective and internally examining enough to understand who you are. And I look back and I look back at when I was younger, whether it was my 30s or 20s, and certainly the teens, and I go, I just was an exclusive leader and exclusive person. I was elitist, very arrogant and condescending, because I was insecure but also try to
That was that was that was really good because my wife is the opposite of me in every way and she's she runs that's why she's good at running Hope Technology School, and the the inclusive program they have there. But I think an inclusive leader has to really began with some degree of valuing and possessing empathy and compassion. And it's about not just putting yourself into
someone else's shoes. It's about liking people. I think a lot of leaders and I work with a lot of leaders in, I spoken at Facebook, I've been involved in a lot of the high tech areas, and doing projects that have put me in contact with Google or working with the people there. And one of the most common things that I see is that people don't have a lot of emotional intelligence. And I'm not sure that that's something you just possess, I think that's something at the very least, that has to be nurtured and developed in you. And what I mean by that is, again, that capacity to look at people and see people to be able to value everyone. And I think one of the reasons I love inclusion is because once you learn how to value someone's special needs, you will also learn to value everyone and I feel like that's happened to me, I value everybody's contribution when I was growing up, I was like, if you're not, you know, gonna have this GPA and you don't play this sport, and you didn't get to this college, then you're not, you know, that was how I graded it out. And then we have a special needs kids you're like, I remember, one of my first revelations was talent's not everything. Previous to that I was like no, talent's everything you know, and then you'll know it's not. And then you start valuing other people. And so what's happened for me, especially my age, I've found that in leadership in the corporate world, it's learning how to get Millennials, Generation X, and Boomers all to work together, and be able to respect each other. It's being able to allow someone who's 50 to realize they need to learn and maybe be managed by someone who's 35. And that's a hard thing. But when you become an inclusive leader, you realize there's a lot of emotions, and a lot of roads to navigate, but it can be done. I watch it in the educational system and Hope Technology with my wife, and she does a great job of creating the culture. And it's interesting, because some people I watch come into that culture, and they just thrive. But other people come into the culture and they don't thrive because they have struggle, being empathetic and respectful with everybody's sort of contribution, everybody's value. And so whether it's education, its corporate, its nonprofit, I've been in all those, I think these are the leaders who are who are rising to become more influential. And some people are annoyed, it's like, you got to think about so much stuff, right? You got to think about race, you got to think about gender, you got to think about, you know, background, but that's what we should have been doing all along. And yeah, is it stressful? Yeah, it's stressful. But if you look at the kind of leaders that develop in that environment, I know, for me, we're getting a lot of people that that, you know, I would say maybe this person was an introvert in the way they think more internal. But when we get out of the way, they become really effective leaders, because I don't create this environment where only extroverts can lead. So hopefully that answers the question to some degree.
Yeah, I think there's a lot of truth in there, especially about the reflection and introspection, leadership is not my wheelhouse. That's not what I talk about. But I think that in the work that we do, it really important for us to reflect on everyone's contribution, and then also to change like,
like, you know,
I'm thinking about, like, my first podcast episodes, or my first blogs, you know, writing and how different I approach it now.
Yeah, I, you know, same.
So I, I agree, I think that, you know, we need leaders who are inclusive, we need leaders who, you know, whether you work at a school, whether you're a principal, whether you're an educator, in a classroom, you know, or whether you're a, you know, business leader, yes, inclusive leaders to value everyone.
Well, you know, and I think one of the things so there's a couple of things, one I've in interacting with you or we first started engaging was on Twitter, right? And I think you probably underestimate how
Some people get some people get on social media and they think oh, I don't know if they think they're you know, General MacArthur or or I probably should pick somebody more recent but I don't want to accuse anybody but you know, like, and you are a learner you are like you
a thought popped in my head while you're talking just about inclusive communities. My family and I went to Athens, Georgia last weekend. And my son was in a, like a robotics tournament that was at the near there near the University of Georgia. And there is a coffee shop in Athens called Bitty and Beau's.
Are you familiar? Yeah. Okay, so Biddy and Beau's is a is not an endorsement, although, I think, I think, you know, what they're doing is pushing inclusion forward. But this is not intended as a endorsement or advertisement.
So Bitty and Beau's is a chain coffee shop.
And they employ people with developmental disabilities, specifically people with Down syndrome, because I believe that the founders are the owners that are the ones who started the business, have children with Down syndrome. And so I knew this, and there isn't one close to my house. And I always want to support businesses who, you know, employ people with disabilities. And, and so we're like, finally, I get a chance to do this. This is really cool. So like, we went to Athens, and we, they, my son participated in the tournament. And then I, in my family, we went to like the Botanical Garden, and I'm like, Alright, it's time to go to Bitty and Beau's. So we go in the place was packed, like, packed. I'm like, wow, this is awesome, right?
And so I'm getting I'm in line, and the cashier is someone with a disability and you know, he's asking me what I want and everything like that. And so this isn't really a criticism as opposed to as is like, it's so hard sometimes because the worker the one that was supporting that the people with disabilities had this like, look on his face, like, like, I'm ready for anything to happen, right? Like, like, if he does something wrong at the cashier, I'm ready. And I didn't want to make a scene, but I'm like, Y'all just need to chill.
Like, you just need to chill, let him do like, it's gonna take him a long time. Like, it took him a long time to ring me up. And I'm like, trying to be like, so. Like, not reactive, you know? Yeah, absolutely. Absolutely. does. You know what I mean? Cuz, because I'm not I like not trying to portray, like, I'm a being impatient, you know, because I'm not. But I also don't want to be like, it's okay. It's alright. Because I also don't want to, like feed into that whole thing. Right? So I'm, like, just trying to be like, you know, but you could tell that the person that was supporting him was like, Oh, well, let me just do it. You know, I love the mission. Yes, of this organization, this company and what they're doing. But that little micro interaction, I see all the time, especially in like, education related situations. Like I just, it was a parallel to, like in the class, right? The in the paraprofessional is working with the student, and as a teacher, you're trying to build independence for that student put that the whoever is helping, quote, unquote, helping that person is like, Oh, well, let me just do it. You know what I mean? Yep. So you can create all these conditions for inclusion. Right. But it's, it's still, it's still hard to do. Like, we got to have the mindset shift. And again, not. I'm not trying to criticize people who work for Bitty and Beau's. But I just, it was a moment in time that, you know, obviously affected me because I brought it up.
Yeah, it's interesting, because you clearly you're not saying anything negative about him, what you're observing is the challenge that the company faces, because they don't know how the customer is going to react. So that's the pressure that the individual who's supporting is feeling is they're having to do something that they haven't been trained to do, which is to read each customer, which is really difficult. And if they had known you, they'd have been like, oh, I can show this guy's gonna be good. But I'm sure they have customers that are like, What are you doing? Because what is it there's like 61 million people in America with a disability, right. And I think most people don't want to be inconvenience, they don't want to be inconvenienced by having to put a ramp on the restaurant, they don't want to be inconvenienced by having to establish a table for someone with a physical disability. And I don't even know that I'm, I don't think they're bad hearted. It's just that it's, it's harder, it's more inconvenient. It's more time consuming. And just to to support what you're saying, from a personal point of view, I do the same thing as that support person with my own kids. I'm like, oh, people are gonna be like, Why are you taking so long? And I'll be like, Okay, I'll just get him through, right, because the culture does not. So if the culture of everyone is not inclusion, it becomes more difficult to practice it. Like, I forgot the name of the company, Bitty and Beau's or something like that. It's harder for them to practice it, not because they don't want to because they're in the middle of dealing with people. And I ran, I read a Easterseals study on the impact of COVID, on special needs, and it was somewhat distressing. But I learned something from it is that 80% of all medical professionals are not trained to work with people with disabilities. And so I'm thinking, wow, if medical professionals who can go to school for 8-12, whatever, 18 years, depending on what they specialize in, they're not getting any training in that, how tough is it for the support guy at Bitty and Beau's trying to figure out how to manage all that. And what you're driving for, and I think you've done a great job with and a lot of us are driving for is a culture that says, We can't just force these adults and these kids to be in a back room, we can't just force them to be like, I think in this one of the studies on COVID-19 impact on special needs is said 50% of the stress that the people with disabilities felt was from isolation. So when you look at what you're really talking about is when you talk about inclusion, not just like, hey, it'd be nice to have a kid be a part of something. It's that if you we don't include kids and adults with special needs, they will be isolated. And if and I would ask everybody out there to think about how they've enjoyed the isolation of COVID-19 like the especially here in the Bay Area, we've been locked down.
We don't feel like we've ever gotten out of lockdown. And I'm not even, I'm not even complaining, I'm just saying we've been locked down hard from day one. And and we've had people suffer with emotional health problems that we know because of the isolation. And so I just would plead with those listening to advocate for and understand that if we don't include, those folks will end up in isolation. And if they end up in isolation, they're never going to be able to leverage the talents and abilities they do have, more importantly, they will begin to have emotional problems, the same way people who are neurotypical do so I hear everything you're saying about it. And I love your description, because I felt that description when I'm in my when the when I'm helping my son in his room, and I'm like, Hey, we gotta be there at 12. And, you know, you're taking a little longer to get ready than we need. I gotta jump in here. What's great, though, is his friends will never rush. They will never rush. And they'll be like, no, no, no, he needs to have an opportunity. We can be late, you know, they don't feel that way. So I'm, I'm guilty of not navigating that any better than the poor support person who is trying to navigate it.
That poor person. I'm so sorry. I hope I hope they don't listen to this podcast.
I really?
You went all the way there and paid money to support them. That's what you were doing.
Hey, can I ask you a question? I know that you're interviewing me, but so one of the things that I've been telling people about you is, your, your journey to from being an educator to being such a passionate person for inclusion. I think a lot of people that may listen, and I know I'm gonna get this out to people that are typical, I'm gonna get it out to them. A lot of them. How did how did how do you get a passion for inclusion when you're teaching? When it's not like being pushed on you to do but you grab a hold of it yourself and say, I want to advocate for that that because that's inspired me, but I've never known how you got there.
Well, so the
And I and to even go back farther, I went to private school, I went to private school from pre K all the way through, I like to say College because it was a it was a private Christian liberal arts college in Azusa, California. Okay, y'all can look that up because there's only one.
you know, I graduated with a psychology degree, you can't get a job with a with a BA in psychology. So I got a, I became a behavior therapist for young children with autism, okay. And went down the behaviorist road. And, again, thankful that I'm not still on that road. But that opened the door to me, like, oh my gosh, I love people with autism. I want to work I want to work with kids with autism. And so then I went back, I wanted to go back to school to become a teacher. And so the my, my advisor was like, Well, you know, you're gonna want to get a credential in California. I get a credential for working with students with severe disabilities quote unquote, severe disabilities.
So then went back to school, went to Cal State Fullerton, and learned about inclusion learned that, you know, students with all different kinds of abilities can learn together, right? I had no idea that was even a thing. Then I got my first job in a segregated self contained classroom for students with autism in Pasadena. And,
and part of my teacher training was to take a student and make an inclusion plan for that student that was part of my curriculum. And, and I was like, this is never going to work. You know, this student.This student doesn't communicate, doesn't speak to communicate. He has aggressive behaviors.
You know, he has significant sensory needs, he's never going to, you know, participate in a lesson, stuff like that. Yep. So part of that inclusion plan was to look at the students needs, strengths, and develop the inclusion plan around those strengths so that he can be included in a particular lesson. So I worked with a fifth grade teacher, this student love to tear little bits of paper he loved to cut. So I said, Well, anything that he does needs to involve cutting, or tearing.
And so in the past, it was a fifth grade science class, or geography class, I can't remember now. But they were creating topography maps, and so out of cardboard, so they had a bunch of sheets of cardboard. And they were
outlining the different layers of the cardboard. And so my student would sit there and cut the cardboard. He didn't have one challenging behavior. He hardly made a sound, he just was there and cutting to his heart's content. And there wasn't a lot of expectations there. Because, you know, again, this was just the beginning of my journey. Yes. But it was at that moment that I realized, wait a minute, like kids can be successful as long as we plan for it. Yeah. Well, why can I do this with everyone else?
Wow. That's amazing.
And so that was the moment for me that I went, well, we just needed this with everyone.
So you know, what's interesting about the story, because I've picked up, pick up bits and pieces along the way. But what's interesting about the story is there a lot of people because I dropped a lot of class, but not a lot. But I dropped classes I didn't want to be in in college, that would have gone into that psychology for exceptional kids found out it wasn't gifted and dropped it. And I think how fortunate we are that you didn't drop it, and that you stayed in it, because I think that that's how destinies are shaped and how people end up changing everything. As you're talking about all of it reminds me, you know, when I was a kid, and again, I'm probably older than a lot of your audience. But I'm in second grade. I saw i i When I was growing up my family 60s, we were in a all black area for a couple years of my let me see kindergarten in first grade.
And then in second grade, we moved to another neighborhood. My parents was, you know, well, it was like no black people. They're like, it was like all white, which was fine. And I was in one of the better schools in the area. And I my first report card came home, I brought it home. And it was all Cs and I hadn't gotten anything like that before. So my mom was like, What's this all about? And my teacher it also made me spell my name. My name is spelled E-W-E-L-L she had made me spell my name. E-L-W-E-L-L. Elwell instead of Ewell. And I told her I kept telling her I remember I'll never forget this because I was like seven. I was like, No, my name is E-W-E-L-L. She goes no, it's not. And she she happened to be older, much older, like retirement age, probably at the time and white. And she was like no, you don't know how to spell your name. You will write E-L-W-E-L-L on there. So I did so I brought my report card home. And I brought this book home and my mom goes what's going on? And she went to see the lady and my mom to know my mom has to know someone who will not put up with that.
Sure. And she was a teacher at another school district and she went to straighten it out. And and she did she get it all straightened out. But the teachers first comment was oh Cs are great for kids like that. And that also shaped my view of inclusion. Because I think that inclusion at the end of the day is about not creating an environment of judgmentalism that says because of the way you appear, or because
of the way you behave, I'm going to lock you in and say you can't do any better than that. And so that also drives me with regard to it. And it's because it's not just about race, it's about the understanding the differences between people. And it's helped us expand our work, because we've had times where our kids have, meaning, the kids in our program that have special needs, that have had difficult moments. And one of our goals is for the parents to be able in our sports programs. And we have E-hoops E-fitness, there's a plan to start E-flag football, which that one's curious when for me, I'm like, I that's gonna be that's gonna be fun.
There's been E-yoga, I mean, we've got all kinds of them. But the goal is to have the parent for that hour, be able to stand on the sidelines, like my parents did, and watch their kid do something. And so we have to work hard to train them. But I was, you know, I just want all the parents out there to know. And they can find this stuff by just looking up E-sports, our E-sports site, if they want to know how to how to do it, and we have videos of how to do in your area. But I want parents to know, because I think it's very discouraging for young parents sometimes. And they can feel hopeless, and they can feel like this is never going to work. And if you're like us, you have a kid with autism, and he ended up having some digestive challenges, but we didn't even know what was going on. And there's a lot of sleepless nights and a lot of frustration of going to doctors not being able to get the answer. And for the educators out there, I'd like them to also understand that when parents parents are doing a lot of work that has nothing to do with that classroom, that's exhausting them. So you have to try to give them a little mercy and grace. And some parent, I always try to be cool because I you know, I just try to be cool about stuff. But some parents, they're on edge, you know, and then that teacher is like, your kid can't do it, he's got to do it, you know, and then a parent maybe kind of has a moment. And people may go I don't want to be around the parent anymore. There's a lot of work parents are doing, and a lot of sleepless nights. And that's why any mercy you can give them as good but it's also the hope that I think parents can have as your educators like you their programs like ours. There are there are a lot of people today, I think all over America that are trying really hard to get this to happen and we're not there. But when I started out people like you didn't exist. Like there were there weren't people like I'm I'm young, I'm going for it I want to I want to help you know, they're very rare. And so this is a great time if you're going to have a special needs kid to be in the school system and to be in society.
Well, I'm gonna I'm gonna receive all that hope Russ and just put it all back out into the universe because I think that I feel like there is a there's a groundswell a movement towards inclusion. And it's not just it's, it's, it's more than just, you know, us to talking about I think that there's there's more there's more podcasts being, you know, produced not only by educators or parents, but by people with disabilities.
Russ Ewell. It's been a pleasure speaking with you, and thanks for being on the podcast.
Think Inclusive is written, edited and sound designed by Tim Villegas, in his a production of MCIE. Original music by Miles Kredich. If you enjoyed today's episode, here are some ways that you can help our podcast grow. Share with your friends, family and colleagues. And if you haven't already, give us a five star review on Apple Podcasts or Spotify. Special thanks to our patrons, Melissa H., Veronica E., Sonya A., Pamela P., Mark C., Kathy B., Kathleen T., Jarett T., Gabby M., Erin P., And Paulette W., for their support of Think Inclusive. For more information about inclusive education or to learn how MCIE can partner with you in your school or district. Visit MCIE.org. We will be back in a couple of weeks. Thanks for your time and attention. And remember, inclusion always works.
