Season 9 Episode #13 Rethinking Disability, Dignity, and Belonging with Dr. Stuart D. Jones

What can one brother teach us about dignity, belonging, and the true meaning of inclusion?

In this powerful episode of The Cultural Curriculum Chat Podcast™, host Jebeh Edmunds interviews Dr. Stuart D. Jones, author of For the Love of Stephen.

Through storytelling and lived experience, Dr. Jones shares how his brother Stephen, who lived with intellectual and developmental disabilities, reshaped his understanding of empathy, faith, and humanity.

This episode is especially meaningful for:

Educators
Parents
Future teachers
Disability advocates
Community leaders

Listen and discover how stories like Stephen’s can help us build more inclusive and compassionate communities.

Learn more about Dr. Stuart D. Jones and his work at:
www.authorstuartjones.com

Transcript

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SPEAKER_01 0:25

Hello everyone, and welcome back to the Cultural Curriculum Chat Podcast, the show where we explore culture, identity, leadership, and education through meaningful conversations with change makers, authors, educators, and community leaders. I'm your host, Jebba Edmonds, educator, cultural consultant, and author. Today's episode is a powerful and deeply human conversation about disability, dignity, belonging, and empathy. My guest today is Dr. Stuart D. Jones, author of For the Love of Stephen, a heartfelt memoir about his brother who lived with intellectual and developmental disabilities. This book includes a forward by Dr. Temple Grandin and is now included in the Library of Congress. Dr. Jones brings a remarkable range of life experience to the conversation. He began his career in ministry, later spent 30 years in executive leadership and higher education, and now teaches speech communication at the university level. But what makes his work especially powerful is that it is not rooted in theory, it's rooted in lived experience. Through storytelling and reflection, Dr. Jones invites us to rethink what it truly means to belong, to challenge assumptions about disability, and to deepen our empathy for one another. Dr. Jones, welcome to the Culture Curriculum Chat.

SPEAKER_00 1:56

It's my honor. And with a and with a glorious introduction like that, I feel like I've got nowhere to go but down. You know, the exit the level of the bar says so high for me. Oh no.

SPEAKER_01 2:06

No, you're totally fine. I just love giving my listeners and audience just a rich background before we get into it to get them more engaged and ready to hear from you.

SPEAKER_00 2:18

Let's make it happen.

SPEAKER_01 2:19

Let's make it happen. So let's begin with your dear brother Steven. Who was Steven and how did his life shape your understanding of what it means to be human?

SPEAKER_00 2:31

Yeah, thank you. Great question. Steven was the oldest of our family. I was the youngest. There's a couple siblings in between. But the story that I share has many remarkable points to it. Steve was the first in our family, born to my parents, who were just 18 years old when they had to get married. This is their first child, a special needs child. So when you're 18, you're still trying to learn what adulting is, let alone parenting. And they're trying to understand that now we suddenly have a special needs child, and how do we do that from a parenting aspect? But Stephen was such a blessing in my life. You know, growing, you don't realize when you're a kid and a teenager, what blessings look like. It takes some wisdom and maturity over the years. But as I look back now on my life with Stephen, who was the kindest soul, even though we had intellectual and developmental disabilities, he had a heart as big as the outdoors, giving, loving. His Christian faith carried him. And so I learned a lot from Steven. I really did as I look back on it. I learned a lot about accepting others unconditionally. I learned what inclusivity means because Steve did not know a stranger. I learned what unconditional love looked like. I learned what not judging others before you get to know them looked like. And I learned a lot about perseverance about because oh my gosh, Steven was just so persevering. He had so many physical challenges, mental challenges, but he never complained, he never whined, he didn't want pity, he just wanted to live life to its fullest. Gosh, that taught me so much that I'm so grateful for.

SPEAKER_01 5:00

Yeah. And what a blessing for him to be your teacher in that way, you know. Oh my goodness. And and let's talk about your book, your memoir. You know, you've touched on so many great points about your big brother. And what also inspired you to finally tell this story with the world?

SPEAKER_00 5:20

Yeah, many things. Uh certainly love compelled me, and greed compelled me. Although this book is not about Stewart's therapy. Thank goodness it's not. It's about telling not a story of tragedy, but of triumph. I was compelled to, because again, in the circles of inclusion and talking about diversity, equity, and inclusion, you know, that's a big topic. And too often, in my humble opinion, those with disabilities get left out of that conversation. We do look at uh religious diversity, ethnic diversity, cultural diversity, and we should, gender diversity. Diversity is a big topic. But too often, I think, as I've been learning, as I meet with disability advocacy groups, they're worried that those who are disabled really tend to get left out of those conversations. One friend of mine, disability advocate, said they're always invited last to the table when it comes to inclusion and discussions about it. And then they get their chair yanked out if somebody else leaves that space. So it's an audience that I just want to create with this book awareness that every life has value and worth, regardless of how we judge it, label it, unfortunately, stigmatize it, unfortunately. You know, if you do believe, and 80% of the world supposedly believes in some divine creator, if you believe in divine creation from a great creator, you've got to believe that every human being has intrinsic worth and value. Where the problem tends to lie is our ability to see it, to acknowledge it and see it and claim it once and for all in our head and in our heart. And I guess part of what I want to do with this book is just remind people of that and challenge them. And not to go on too long, but I do call the book a mirror, a memorial, and a movement. And I do that on purpose. I call it a mirror because the book will, as you read it, will challenge every person to look at themselves. What am I doing to include or exclude those with disabilities that I don't even know that I'm doing? And I'm sorry if I'm doing it, and I'm sorry if I'm prejudging, and I'm I'm I gotta look at myself in the mirror and figure out how do I break down my own prejudice? God, hope I hope it's not bigotry, but how do I break down these barriers in my own head about those who look different, act different, respond differently, speak differently. I've gotta take a look. Secondly, it is a memorial, obviously, because Steven was not a famous person. He didn't get on the Kelly Clarkson show. He didn't make an album that sold a billion copies. He tried to sing and he was terrible at it, by the way, which is a funny story in the book. I love everything. It is a memorial to a light well lived that teaches us so much. And lastly, I do pray it's a movement. Because I'm not asking readers to just read and say, Oh, that was a great story. I'm asking readers to say, that's a great story. And what am I going to do from now on? How am I going to think, act, and respond differently and make sure my world is inclusive of those with disabilities?

SPEAKER_01 9:05

Well, I love that, Stuart. And and I love how you broke it down the mirror, the memorial, and the movement. Because yeah, you can be moved, but this is an activation, you know, like, okay, take Stephen's story and keep going. How can you, you know, reflect on your own actions? You know, like you said, oh, this is great. And we know, especially, thank you for painting that picture of having that chair pulled from under our disabled, you know, family groups for that inclusivity. You know, people still hold those misconceptions about individuals with intellectual and developmental disabilities. What are some of the biggest misunderstandings that you encounter?

SPEAKER_00 9:51

Yeah, the biggest one that I know from growing up with Stephen, that I know from my own reading and talking with other families and with disability advocacy. The biggest one is simply dismissing and underestimating. We immediately assume it's somebody with an intellectual disability, with a, unfortunately, we use these stupid IQ standards, but somebody with a low IQ, with cognitive challenges, can't do much, is a tremendous mistake. Steve could do much more. My friend Temple Grandin, who is autistic, was dismissed her whole life. And and early on, like my brother Steve, marginalized and kind of cast aside. And people thought, what can she do? You know, she has a disability. What can she possibly offer to the world or to society or to work or to anything? And she offers, oh my goodness, mountains of information, intelligence, wealth, and wisdom. And Stephen had his own way of doing that too. So we tend to see people with disabilities, and we have a couple innate reactions that I talk about in the book. One is pity. Some people will quickly jump to pity, like, oh, oh, that poor person, what a terrible life they're living. No, I don't think they would say that. Steve would not say that. Steve didn't want Steve did not want pity. He wanted inclusion. All Stephen wanted was to belong and feel like there was a place for him, not just to be invited to the table, but to be seen at the table.

SPEAKER_01 11:38

At the table, yes.

SPEAKER_00 11:40

And acknowledged at the table as fully human. So pity is one reaction. And the other tends to be, and people have confessed this to me, and I understand, but the second reaction tends to be fear. Oh dear. As a disabled person, should I talk to them? I'm uncomfortable. Who cares about your comfort? I don't know. But anyway, I'm uncomfortable around somebody who looks different, acts different, moves different, thinks different, speaks different. Getting past your own uncomfortableness. And again, seeing another human being who's different, but not less than you.

SPEAKER_01 12:21

Yes.

SPEAKER_00 12:22

Breaking down those barriers is so tough for people. Don't go to don't jump to pity. Don't jump to being afraid. See another human being like you would meet any human being. And engage them in any way you can. They will appreciate that so much. Just to be sane and acknowledge.

SPEAKER_01 12:42

Yes, that is so. And it doesn't cost anything. Yeah, that's right. No money, no extra training, no extra credit hours for your professional. It's just seeing another human being to another human being. And I love how you said and to see them and also acknowledge that they're here because one of you.

SPEAKER_00 13:05

You can let them sit there, but you can also just continue to pretend they're invisible. So having them near you is not inclusion.

SPEAKER_01 13:13

No, it's not. I feel like it's performative, you know, just like, well, you're here. I'm not gonna engage, I'm not gonna look at you, I'm not gonna stare at you, but I'm just gonna be like, oh, there you are. But not have a conversation, not, you know, have some sort of, you know, interaction. That to me, I love that. Yeah. And and one of you, yes, go ahead.

SPEAKER_00 13:35

I was gonna say, and please, please, I never want to make myself out to be a saint because I am not. We won't go down that road. That's another podcast.

SPEAKER_01 13:45

I got you too, Stuart. I'm the same. I'm like, we make mistakes, we stumble, but yes.

SPEAKER_00 13:51

I confess in my book that I too, just as a regular human being with who's not perfect, I I'm quick to judgment too. Oh, he, you know, oh, he looks creepy. Oh, why is she wearing that? Oh, we just make these judgments so quickly. And it's the old adage, you know, don't judge a book by its cover. Forget the cover. Let's get into the book and see what this human being is all about. And I remember I recently, in in chapter eight of the book, it's called God Don't Make No Junk. It was a sermon preached by my pastor when I was a preteen, and it changed forever the way I would think about my brother Stephen, thank God. But I use that chapter as a sermon, and I've delivered it at just a couple churches now. But I was so happy at one of the churches, I saw a family come in with an with an IDD child intellectually, developmentally disabled. And I was so happy to see that. They came just because of the publicity to hear this message: God don't make no junk. But I couldn't help but notice that no, hardly anyone from that church made this visiting family with a special needs adult. He was actually an adult at that time in his 30s. They didn't speak to him, they didn't acknowledge him. So, of course, I made a beeline to him, right? And all I did was introduce myself. He was nonverbal on this on his autism spectrum. So his mother helped make the introduction. She gave me a few tips on how to communicate. So I did my best to communicate with Samuel. And it was probably the greatest blessing of that morning. I met all kinds of neurotypical people. But meeting Samuel, who is neurodivergent, was so special to me. And he got loud at one point, which I was I didn't but didn't bother me, but of course it makes people look. His mother said, Oh, Dr. Jones, he's just happy right now. He's he's happy, he's happy that you're standing here talking to him. And and that's the sound he makes with joy. And I thought how great. But for many people, that's uncomfortable. Moving past that is the challenge we all have.

SPEAKER_01 16:05

Yes. Oh, that is so powerful. And just how you even shared like you went to his mother to kind of ask of, you know, what is an appropriate way of interacting with your son?

SPEAKER_00 16:17

Exactly.

SPEAKER_01 16:19

Simple. She gave you tips and you went and took that direction. That is so amazing. And again, something that if you're not sure, ask that caregiver with that person to say, you know, what is the best way to interact with the person that you're caring for? And that's all it takes. And again, they would feel comfortable to go, wow, you see the person I'm caring for, my child, as someone of value, of someone that is, you know, worthy of being, which they're all enough, but they're worthy of being interacted. And you want to be appropriate as well. Oh my goodness.

SPEAKER_00 18:01

So talk you because you get this. And I knew I knew before the podcast ever started, you already get it. I'm talking to the choir, I'm preaching to the choir, and it's fun.

SPEAKER_01 18:12

And I do, I love that phrase that you said, God don't make no junk. Yes, right. That it's so true. So true.

SPEAKER_00 18:20

It's based on Psalm 139, verse 4, which is you know, we are fearfully and wonderfully made, and we know that full well. And so the message is if God is the creator, this is not this human being is not a mistake. There's a purpose, there's a reason in all of God's creation for how we are made. And I love that we're all so different, you're different, I'm different. If we were all the same, we would be androids and it'd be a boring world. So boring, so boring.

SPEAKER_01 18:52

I love this. Now, I just to continue this conversation because it is so good, you know. When you shared about your family navigating systems and spaces, you know, at the time when your parents they were married young, this is their first child, you know, that didn't always include, you know, your brother. It wasn't designed to include your brother. Right. What did that experience teach you about those systems of inclusion and the lack thereof?

SPEAKER_00 19:22

Yeah. Again, not to repeat myself, but I'll I'll I'll make a little quote here that's I don't even know who said it. Youth is wasted on the young. And because it's not until we get older that we really realize stuff, including about my parents. Part of the reason I wrote this book, too, was because I admire my parents. Growing up, no kid admires their parents. No kid thinks their parents are smart or wise. You know, they're like, no, and I know everything at age 13 and 14. What do you guys know? I realize now my parents were absolutely amazing. And here's why they were amazing. They were pioneers before they even knew what pioneering was. Steve was born at a time in the early 50s and grew up in the 60s and 70s where special needs children were excluded. They were usually put in institutions. That was the recommendation my parents were given by a doctor and by my father's own mother, Stephen's grandmother, you know, put him away in the state hospital. You don't want to care for him. And, you know, you can visit him on weekends or Easter or Christmas, whatever you want. And my parents, age 18, said, no. Dad and mom said, we didn't even think about it. Our instant gut level charge reaction was, no, this is our child. We will figure out how to raise him. Now, in Steve's day, not only were they institutionalized or they were hidden away in the home as something to be ashamed of. My parents said, you know, there's no there were no resources. There were no services then. There weren't special education was barely starting to dawn as something a teacher could major in and learn how to provide special education. Steve didn't have it for the first several years of his schooling life. Um so you know, it took him a while to catch up educationally with reading and trying to write and knowing his numbers and letters. But what my parents did, and I'm gonna cut to the chase here, one of my son did was they refused the prescriptions of society about what to do with a special needs child. My father was far more bold, he wanted people to see his son. So not only did we go to church, and Steve was fully active in church doing ushering or doing whatever tasks, you know, uh church ministry requires. But dad took Steve to join 4-H, and there was no special education group in 4-H, there was just kids. So it's like, here's my son Steve, he's joining 4-H, you know, let's let's do this. And of course, the leaders are like, Whoa, okay, oh, this is interesting. We know we know how to do this. And dad took him to Boy Scouts, and thank the Lord, we had two wonderful Boy Scout leaders. And I went to Boy Scouts too. I followed Steve and Boy Scouts, but these were two men who said, Steve, yeah, he's welcome here. Let's put him in with the quote regular kids. And let's my parents were integrating Steve in a time when you didn't integrate special needs children, and it made all the difference because for Steven, it bolstered his confidence. It really did. So made me feel like I do belong. And then he began to grow into a mindset of I don't understand why people don't want me to belong. I belong in church, I belong at Boy Scouts and forage. You know, I belong in church softball and church basketball. I I can't play very well, but I belong. Yeah, and I can't play very well. So you know, it just is wonderful that my parents were inclusive before inclusion became a buzzword, right?

SPEAKER_01 23:24

Exactly.

SPEAKER_00 23:25

Yes. And like you said, and not that they were obnoxious, but the

SPEAKER_01 23:29

They they brought they kicked open the front door whether it was open to the and they brought it and just how you said they totally did not follow that prescription that society had for Stephen. Huge, you know, and like you said, they are pioneers, they had no idea, but they saw their child and they said, you know what, doggone it, he's gonna be involved in all of these things, and you are going to accept him as he is, you know, and and keep moving forward. That's amazing.

SPEAKER_00 24:00

And I think that's something my parents did right, too. That I put in the book. I've done a special chapter for parents, and my mom and dad weren't perfect. They will tell you they're still alive, God bless them, at age 90, and they were instrumental in helping me get this book rolling because they had all the stories. But uh my my parents were were great in the way that they treated Steve just like any other human being. They didn't condom him, they didn't shield him, they they didn't give him special favors. If Steve acted out, he got in trouble. If I acted out, I definitely got in trouble. Well, you know, my parents raised him as a neurotypical child just to be able to see what he can do. And if I can tell a really quick story, yes, yes. Thank you. This is pivotal in my parents' life. Again, early on, now my my now my parents were about 21, 22. They had heard all the diagnosis and prognosis from the so-called experts who didn't know much in that day about neurodivergent children. But they, you know, they were told, Steve, probably can't do this, probably won't be able to do that, so don't be upset if he can't do this. Just a whole laundry list. So my parents felt a bit defeated at first as young parents. One summer, my aunt Betty was determined that that little boy named Stephen Jones was gonna learn how to pedal a tricycle with training wheels, right? Well, actually, a tricycle's got those two wheels, so you really you can fall over, but you gotta be careful. She worked with him, my mom and dad said, every day, day in, day out. She came over and she kept working with him. Finally, one day, my mom and dad said, Betty and Betty is screaming at them, Keep, Phyllis, get out of here. Keep, Phyllis, get out of here. And they came out, and that little three-year-old boy was slowly using his feet and le and legs to pedal that bicycle. Now my parents started to cry. It was like to them, Stephen won the Tour de France in their minds, right? But here's what changed. My parents said from the moment on, they stopped thinking about what can't he do, and they started asking a different question. What can he do? What is he capable of? That changed the whole trajectory for Stephen's life.

SPEAKER_01 26:23

That's amazing. And how you're the people around Steven, his parents, his aunts, you know, his siblings, they never gave up on him. Just how she was consistent every single day, like this kid is going to learn how to ride this trike, you know, and and they got rid of that deficit mindset of what he can't do, but what can he do? I mean, wow, I would have been tearing up to like look at him. Wow.

SPEAKER_00 26:50

Well, my parents give us siblings a lot of credit that I'm not sure we deserve. But mom and dad said Steve was so blessed, Stuart, to have you and Scott and Susan because you taught him so much. So much. And I guess that's true. We uh I taught him how to bowl, and he had a unique style of rolling that ball down that lane. I loved it, and he wasn't that bad. And Steve carried bowling all through his life and joined bowling leagues and bowling teams. And one year his little group made him captain of the bowling team, which made Steve just beam with pride, but you know, teaching him how to do what he's able to do. You know, what can he do? And get rid of the mindset, what can't he do?

SPEAKER_02 27:38

Exactly.

SPEAKER_00 27:40

He said, listen to the doctors, but you don't have to subscribe to everything they say.

SPEAKER_01 27:46

That part. That part, yes, I know that's a whole nother episode, too. She's good about you got it. You got it. Oh my goodness. So, for educators listening to this episode, Stuart, what role do schools play in helping students understand dignity, empathy, and belonging?

SPEAKER_00 28:05

Yeah. I just a week ago, was it a week ago? Oh my gosh, it was a week ago to today. I had the privilege of speaking on campus at Manchester University here in northern Indiana to a group of future special education teachers. What a privilege that was. And I asked them some questions. I just, you know, I wasn't trying to trick them, make them feel inadequate, but I told them Stephen's story. I wanted them to understand where we've been, where we are, and where we still need to go. We haven't rhymed yet, don't play a long shot. Just like in the book, like in the book, I say civil rights doesn't didn't mean that racism is forever gone. Hello. That part we are still walking that journey, right? But I asked them questions about now, you guys, I said as special education teachers, how will you create an environment of belonging, not just including them, you're going to include them into your class. How do you think you're going to see them, include them, hear them, make sure that they know they are a part of this class and not just, you know, in it? And that was something we had a discussion on. They had to really stop. There were silence, of course, and they had to stop and reflect and think about that because they're learning theory, you know, and you do in college. There's a lot of theoretical uh learning, but pragmatically, they will soon be in teacher internships. And they will have to figure out. Now, I've learned all this and I read all the great authors on this subject, and I've taken all the tests and written all the papers. Now I have to apply it in a real life, real situation setting to make sure that these wonderful, God-created children are being seen and heard and acknowledged and a part of. So I challenge them with that. Another real quick thing, and I'm just so blessed. I'm not going to say the name of this college because I don't think it's official yet, but there is a special education teacher program at a college in Massachusetts, and the program chair is pushing to make sure for the lump of Stephen is recommended reading for all of the students wanting to become special educators. And that means a lot to my heart.

SPEAKER_01 30:29

That's amazing.

SPEAKER_00 30:30

Yeah, because she said, Stuart, I want them to read a real life story, uh, not just all the experts and the theorists, but a real life story about an individual and where he came from and the era he was born and where he came to, et cetera. And she said, I want them to read a real inspirational story. She said, I think it will inspire them in the work that they do.

SPEAKER_01 30:55

So yes, and they'll always have, you know, a Stephen in their classroom when they encounter their classroom. And so I feel like it is, it should be on every teacher's desk. Because a lot of us educators, you know, that didn't have the special education background would have definitely benefited from your book because in the state of Minnesota, a lot of that is students like Stephen are integrated in our general ed class. Even if it's for a portion of the day, we also need to have Stephen in our class with dignity and respect and how to integrate him into our classroom and and those like Stephen. Oh my goodness, this was such an amazing conversation. Where can we get your book, Dr. Jones? Yes.

SPEAKER_00 31:46

It is so simple to find. I mean, if you just do a Google search, it'll pop up right away. It's on I'm just impressed and blessed. My book's on 50 book platforms all over the world now. Amazon carries it, Barnes and Noble, Goodreads, Kobu, every it's it's on all the platforms. It's an audiobook too. I've got people buying the audiobook, and I narrated that because I was told as a memoir, you should be the narrator.

SPEAKER_02 32:15

Yeah.

SPEAKER_00 32:16

So I I jokingly tell people if you really want me in your head for nine hours, buy the audiobook. It's a scary thing for me to be in your head for nine hours. It's a lot.

SPEAKER_01 32:29

Gosh, no, with your humor, I think it'll be just fine, Stuart.

SPEAKER_00 32:34

It's funny too. I want people to know that the book has a lot of humor because I do. But they can find it on Amazon right away. A Google search, they will find it. My website, I invite you to participate in my website. It's a fun website, it's very active, but it's at www.authorstewartjones.com. And Stuart is S-T-U-A-R-T. Most spell it with the E W, but it's S T-U-A-R-T. Authors Stuart Jones is where I want you to go. You can buy the book there on that website as well. And I hope you love it. The reviews, if you'd like to, if you're not certain about the book, just check out the amazing Amazon reviews. That you you know, when you write a book, you don't know if it's gonna mean anything to anybody.

SPEAKER_01 33:20

Oh, I can attest to that. You know, what's on your laptop and then it's in book form, you're like, oh my gosh.

SPEAKER_00 33:26

It's like we're gonna read it. Yeah, I know. You really put your life out there and you're like, oh, what have I done? Yeah. But the reaction to the book has been overwhelming. I have been moved to tears more than a couple times by the reviews that people reading it have given. So that's a blessing to me as well. So the book's doing what I hoped it would do. It's changing hearts and changing the way we see others. Thank God for that.

SPEAKER_01 33:55

Oh, I can't wait to grab my copy as well. And oh, Dr. Stuart Jones, thank you for being on this podcast and for sharing your story. Oh, I'm just so honored that you were here to join us today. And again, your message reminds us of what true inclusion looks like. And just humanizing people like Steven, they're still here, they still are worthy of getting to know each other because that is their special assignment created by God and to help us look inside ourselves to see what this world and the human experience is all about. And thank you so much for that. And if you listeners and viewers enjoy this conversation, please share this episode with a fellow educator, parent, or community leader who believes in creating more inclusive spaces. And I will have Dr. Stewart's information, like he mentioned, in the show notes as well. And also, if you're an educator looking for more culturally responsive and inclusive lesson plans, please check out my website, jebbaedmonds.com. I have many courses and full courses for educators like yourself who are willing to do the work that is tangible and also very straightforward from another former classroom teacher. Thanks again for listening and joining us. And we will see you here same time next week. Bye bye.