Inclusive Leadership in Action: Russ Ewell’s Journey from Sports to Systems Change ~ 1007

Tim Villegas
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,

Russ Ewell
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. 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 thought, this is not—we can’t do this. So I said, I gotta figure something out.

Tim Villegas
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 discuss the characteristics of an inclusive leader. Later in the interview, he turns the tables on me and asks me some questions about why inclusion is important to me. Thank you so much for listening. And now, my interview with Russ Ewell.

Tim Villegas
Well, it’s a pleasure to have you on, Russ. The last time we talked, you were sharing your journey with your family, creating E-soccer, and why inclusion is important to you.

Russ Ewell
Yes, absolutely.

Tim Villegas
Why don’t you tell us why inclusion is important to you?

Russ Ewell
I was thinking about our last talk. I remember I was in my garage when I was talking to you on the phone. Now I’m sitting in a little studio we use for all of our stuff. I’m older. In 1991, my first son was born, and we were in the delivery room. Everything was normal. My wife gave birth, we’re sitting there—she’s laying down, I’m standing there. It had been a medium-long labor, so we were tired. Our doctor wasn’t there, so the attending came in and said, “Now you do know your son has Down syndrome, right?” She said it like I should have known that. I was like, no. My wife instantly knew what it was, but I had never really consciously been aware of Down syndrome. I asked, okay, what does that mean?

They did everything you do with babies and said, let us call a doctor to come in and talk to you. His name was Dr. Sal—I’ll never forget it. He came and talked to me and said, “I want to talk to you about Down syndrome and your son. I was eating dinner with my family, and when the call came out for someone to talk to you, I decided I’d take it.” I thought, this is serendipity for which I’m grateful. He was the head of genetics, not just a doctor. 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.” That framed my view of life from 1991 on.

We went—this is in California—to the place where they were holding soccer sign-ups. All the teams were out there. You may remember being young and everyone goes to the field, they’re signing up, getting registered. I walked in; I didn’t know where our team was. I asked a couple of guys; they said, “Oh, that group is around the corner.” I ended up walking with my son all the way through all the typical kids. The walk felt long, though it was probably short. We finally got to this corner in the back. That’s where all the special needs kids were. I’m sitting there going, this is not my idea of a great time. As we’re walking, we’re seeing his friends who are typical. Now he’s not going to be with them. I thought, this isn’t how I did it.

We went through it. After about six weeks, I was driving my van. My son was in the back. I looked at his face—he wasn’t smiling. I looked at my face—I was smiling. I thought, we can’t do this. I have to figure something out. I read an article about soccer—this is the ’90s. It said soccer is a global sport and America wasn’t really in it at the time. The odd thing about it is soccer is eye-to-foot coordination, whereas baseball, basketball, and football are more hand-to-eye, and hand-to-eye is more difficult. It’s surprising. Those of us who played kickball know it’s something everybody can do. I read it and thought, wait a minute, maybe I need to get my kids into soccer.

I had about six friends at the time. We talked about it and they said, yeah, we could do it. That’s how E-soccer started. 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. Nathan—one of my producers—is one of my son’s friends who’s been with him since they were eight years old. I want that for every kid. I want every kid with special needs to feel like when they go to an event, they’re not walking to the back; they’re not the exception; they’re part of the whole experience. And it’s been fantastic.

Tim Villegas
Unfortunately, the story that you shared—people are still experiencing segregated spaces in sports. Not only sports, but in school.

Russ Ewell
That’s right.

Tim Villegas
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, we’re going to sign up together and play T-ball—that experience is different if you have a child with a disability, and it shouldn’t be.

Something we don’t talk about a lot on this podcast is inclusive leadership. I’d love your perspective on what it takes to be an inclusive leader. What characteristics should you have, or strive for?

Russ Ewell
That’s a great question—phenomenal. I’m still working on that, because I don’t think that’s my origin. When I grew up, I learned command-and-control leadership. Mostly, I wanted 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 helped me look better, then I would do it, but I wasn’t into helping people.

When I was about 19–21, it was a combination of maturing—though I wasn’t there yet—and being exposed to spiritual and philosophical thinking in college that I hadn’t been exposed to. I started to become aware I was someone who suppressed my emotions—some from growing up, some family dysfunction—and I was a boy too afraid to be vulnerable. I tell you that because part of becoming an inclusive leader is a personal journey of being introspective and examining yourself enough to understand who you are.

I look back—my 20s, 30s, certainly my teens—and I see I was an exclusive leader and an exclusive person. I was elitist, very arrogant and condescending, because I was insecure but also trying to—

That was really good for me because my wife is the opposite of me in every way. That’s why she’s good at running Hope Technology School and the inclusive program they have there. I think an inclusive leader has to begin with valuing and possessing empathy and compassion. It’s not just putting yourself in someone else’s shoes—it’s about liking people.

A lot of leaders—I work with many; I’ve spoken at Facebook; I’ve been involved in high tech, working with people at Google—lack emotional intelligence. I’m not sure that’s something you just possess. At the very least, it has to be nurtured and developed. By that I mean the capacity to look at people and see people, to value everyone. One reason I love inclusion is that once you learn how to value someone with special needs, you learn to value everyone. That happened to me. I value everybody’s contribution. When I was growing up I thought, if you don’t have this GPA, don’t play this sport, didn’t get to this college, then you’re not— that was how I graded it. With a special needs child, I realized one of my first revelations: talent is not everything. Previously I thought talent is everything. It’s not. Then you start valuing other people.

At my age, I’ve found that in leadership in the corporate world it’s learning how to get Millennials, Generation X, and Boomers to work together and respect each other. It’s allowing someone who’s 50 to realize they need to learn and maybe be managed by someone who’s 35. That’s hard. But when you become an inclusive leader, you realize there are a lot of emotions and roads to navigate—but it can be done.

I watch it in the educational system at Hope Technology with my wife. She does a great job of creating the culture. Some people come into that culture and thrive. Others don’t because they struggle to be empathetic and respectful of everybody’s contribution, everybody’s value. Whether it’s education, corporate, or nonprofit—I’ve been in all those—I think these leaders are rising to become more influential. Some people are annoyed: you have to think about so much—race, gender, background—but that’s what we should have been doing all along. Is it stressful? Yes. But look at the kind of leaders who develop in that environment. We get a lot of people who might be introverts, who think more internally, but when we get out of the way they become really effective leaders because we don’t create an environment where only extroverts can lead. Hopefully that answers the question to some degree.

Tim Villegas
I think there’s a lot of truth there, especially about reflection and introspection. Leadership is not my wheelhouse—that’s not what I talk about—but in the work we do, it’s important to reflect on everyone’s contribution and to change.

I’m thinking about my first podcast episodes or my first blogs and how different my approach is now.

Russ Ewell
Yeah, same.

Tim Villegas
I agree. We need leaders who are inclusive—whether you work at a school, you’re a principal, an educator in a classroom, or a business leader—leaders who value everyone.

Russ Ewell
When we first started engaging, it was on Twitter, right? I think you probably underestimate how—

Some people get on social media and think they’re General MacArthur—or I should pick somebody more recent, but I don’t want to accuse anybody. You are a learner.

Tim Villegas
A thought popped in my head while you were talking about inclusive communities. My family and I went to Athens, Georgia last weekend. My son was in a robotics tournament near the University of Georgia. There’s a coffee shop in Athens called Bitty and Beau’s.

Are you familiar?

Russ Ewell
Yeah.

Tim Villegas
This is not an endorsement, although I think what they’re doing is pushing inclusion forward. Bitty and Beau’s is a chain coffee shop. They employ people with developmental disabilities, specifically people with Down syndrome, because I believe the founders—the owners who started the business—have children with Down syndrome.

I knew this, and there isn’t one close to my house. I always want to support businesses that employ people with disabilities. Finally I got a chance to do this. We went to Athens. My son participated in the tournament. Then my family and I went to the Botanical Garden, and I said, all right, it’s time to go to Bitty and Beau’s. We go in—the place was packed. I’m thinking, this is awesome.

I’m in line. The cashier is someone with a disability. He’s asking me what I want. This isn’t really a criticism so much as it’s hard sometimes. The worker supporting the person with disabilities had this look on his face like, I’m ready for anything to happen—if he does something wrong at the register, I’m ready. I didn’t want to make a scene, but I wanted to say, y’all just need to chill. Let him do it. It’s going to take him a long time. It took him a long time to ring me up. I was trying to be not reactive.

I didn’t want to portray being impatient, because I’m not. But I also didn’t want to say, it’s okay, it’s all right—because I don’t want to feed into that whole thing. I was just trying to be steady. You could tell the person supporting him was thinking, let me just do it.

I love the mission of this company and what they’re doing. But that little micro-interaction—I see it all the time, especially in education-related situations. It’s parallel to class. The paraprofessional is working with the student, and as a teacher you’re trying to build independence for that student, but the helper is like, let me just do it.

You can create all these conditions for inclusion, but it’s still hard to do. We need a mindset shift. Again, I’m not trying to criticize people who work for Bitty and Beau’s. It was a moment in time that affected me, because I brought it up.

Russ Ewell
It’s interesting, because you’re clearly not saying anything negative about him. You’re observing the challenge the company faces—they don’t know how the customer will react. That’s the pressure the individual who’s supporting is feeling. They’re having to do something they haven’t been trained to do: read each customer, which is difficult. If they had known you, they’d have thought, this guy will be good. But I’m sure they have customers who are like, what are you doing?

There are about 61 million people in America with a disability. Most people don’t want to be inconvenienced—by putting a ramp on a restaurant, or establishing a table for someone with a physical disability. I don’t think they’re bad-hearted. It’s harder, more inconvenient, more time-consuming.

From a personal point of view, I do the same thing as that support person with my own kids. I think, people are going to ask why we’re taking so long. I’ll say, okay, I’ll just get him through, because the culture is not inclusion. If the culture of everyone is not inclusion, it becomes more difficult to practice it. For Bitty and Beau’s, it’s harder to practice—not because they don’t want to, but because they’re dealing with people.

I read an Easterseals study on the impact of COVID on special needs. It was distressing. I learned that 80% of medical professionals are not trained to work with people with disabilities. If medical professionals, who go to school for 8–18 years depending on specialization, aren’t trained, how tough is it for the support person at Bitty and Beau’s to manage all that?

What you’re driving for—and I think you’ve done a great job, and many of us are driving for—is a culture that says we can’t force adults and kids to be in a back room. We can’t force them to be—one study on COVID-19’s impact on special needs said 50% of the stress people with disabilities felt was from isolation.

When we talk about inclusion, it’s not just “nice to have a kid be a part of something.” If we don’t include kids and adults with special needs, they will be isolated. Think about how you’ve enjoyed the isolation of COVID-19—especially here in the Bay Area, we’ve been locked down. We don’t feel like we’ve ever gotten out of lockdown. We’ve seen people suffer with emotional health problems because of isolation.

I would plead with those listening to advocate for and understand that if we don’t include, those folks will end up in isolation. If they do, they’ll never leverage the talents and abilities they have. More importantly, they will develop emotional problems, just as neurotypical people do.

I feel everything you’re saying. I love your description. I’ve felt that when I’m helping my son and thinking, we have to be there at 12, you’re taking a little longer to get ready, I have to jump in. What’s great is his friends never rush. They say, no, he needs the opportunity—we can be late. They don’t feel the pressure. I’m as guilty as the support person trying to navigate it.

Tim Villegas
That poor person. I’m so sorry. I hope they don’t listen to this podcast.

Russ Ewell
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 you’re interviewing me. One of the things I’ve told people about you is your journey from educator to passionate advocate for inclusion. A lot of typical folks will listen. How did you get a passion for inclusion when you were teaching—when it wasn’t being pushed on you—but you grabbed hold of it yourself and said, I want to advocate for that? That has inspired me, but I’ve never known how you got there.

Tim Villegas
To go back farther: I went to private school from pre-K all the way through college— a private Christian liberal arts college in Azusa, California. You can look that up; there’s only one.

I graduated with a psychology degree. You can’t get a job with a BA in psychology, so I became a behavior therapist for young children with autism and went down the behaviorist road. I’m thankful I’m not still on that road, but it opened the door. I loved people with autism. I wanted to work with kids with autism.

Then I went back to school to become a teacher. My advisor said, if you want a credential in California, get one for working with students with “severe disabilities.” I went back to school at Cal State Fullerton and learned about inclusion—students with different abilities can learn together. 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. Part of my teacher training was to take a student and make an inclusion plan for that student. I thought, this is never going to work. This student doesn’t speak to communicate. He has aggressive behaviors and significant sensory needs. I didn’t think he would participate in a lesson.

Part of the inclusion plan was to look at the student’s needs and strengths and develop the plan around those strengths so he could be included in a particular lesson. I worked with a fifth-grade teacher. This student loved to tear little bits of paper. He loved to cut. I said, anything he does needs to involve cutting or tearing.

It was a fifth-grade science or geography class—they were creating topography maps out of cardboard. They had sheets of cardboard and were outlining the different layers. My student would sit there and cut the cardboard. He didn’t have one challenging behavior. He hardly made a sound. He was there, cutting to his heart’s content. There weren’t many expectations, because it was the beginning of my journey. But in that moment I realized: kids can be successful as long as we plan for it. Why can’t I do this with everyone else?

Russ Ewell
Wow. That’s amazing.

Tim Villegas
That was the moment for me: we just need to do this with everyone.

Russ Ewell
What’s interesting about your story—because I’ve picked up pieces along the way—is that a lot of people would have dropped a class. I dropped classes I didn’t want to be in during college. I would have gone into “psychology for exceptional kids,” found out it wasn’t “gifted,” and dropped it. We’re fortunate you didn’t drop it, that you stayed in it. That’s how destinies are shaped and how people end up changing everything.

Your story reminds me: when I was a kid—I’m probably older than a lot of your audience—in second grade, I grew up in the ’60s. In kindergarten and first grade we were in an all-Black area. In second grade we moved to another neighborhood—no Black people; it was all white, which was fine. I was in one of the better schools in the area. My first report card came home—all Cs, and I hadn’t gotten anything like that before. My mom asked, what’s this about?

My teacher also made me spell my name. My name is E‑W‑E‑L‑L. She made me spell it E‑L‑W‑E‑L‑L—Elwell instead of Ewell. I told her—I’ll never forget this at seven—“No, my name is E‑W‑E‑L‑L.” She said, “No, it’s not.” She was older—retirement age—white. She said, “You don’t know how to spell your name. You’ll write E‑L‑W‑E‑L‑L.” I did. I brought my report card home and a book. My mom asked what was going on. She went to see the teacher—my mom won’t put up with that. She was a teacher in another district. She straightened it out. The teacher’s first comment was, “Cs are great for kids like that.”

That shaped my view of inclusion. Inclusion is about not creating an environment of judgment that says, because of the way you appear or behave, I’m going to lock you in and say you can’t do better than that. It’s not just about race; it’s about understanding differences between people. It’s helped us expand our work.

We’ve had times when our kids—meaning the kids in our program with special needs—have had difficult moments. One of our goals in our sports programs—we have E-hoops, E-fitness; there’s a plan to start E-flag football; there’s been E-yoga and more—is to have the parent, for that hour, stand on the sidelines, like my parents did, and watch their kid do something. We work hard to train them. Parents can find this by looking up our E-sports site if they want to know how to do it. We have videos on how to do it in your area.

I want parents to know—it’s discouraging for young parents sometimes. They can feel hopeless and think it’s never going to work. If you’re like us, you have a kid with autism who had digestive challenges we didn’t even know about. There are a lot of sleepless nights and frustration from going to doctors without getting answers.

For educators, I’d like them to understand that parents are doing a lot of work that has nothing to do with the classroom. It’s exhausting. Try to give them mercy and grace. Some parents are on edge. I try to be cool about stuff, but some parents are on edge. Then a teacher says, your kid can’t do it; he has to do it; and a parent has a moment. People may say, I don’t want to be around that parent anymore. There’s a lot of work and sleeplessness. Any mercy you can give is good.

There’s hope. Educators like you, programs like ours—there are many people today across America trying hard to make this happen. We’re not there, but when I started out, people like you didn’t exist—young people saying, I’m going for it; I want to help. They were rare. This is a great time, if you’re going to have a special needs kid, to be in the school system and in society.

Tim Villegas
I’m going to receive all that hope, Russ, and put it back into the universe. I feel there’s a groundswell—a movement toward inclusion. It’s more than us talking about it. There are more podcasts being 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.

Tim Villegas
Think Inclusive is written, edited, and sound designed by Tim Villegas, and is a production of MCIE. Original music by Miles Kredich. If you enjoyed today’s episode, here are some ways 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.