Different, Not Broken: Disability, Dignity, and the Power of Seeing People Fully with Dr. Stuart D. Jones

There are stories that don’t just move us — they change the way we see the world.

In this episode of Hope Comes to Visit, I was grateful to sit down with educator, speaker, and author Dr. Stuart D. Jones to explore a deeply personal story about dignity, disability, and the extraordinary value of every human life.

Dr. Jones shares the story of his brother Stephen — a boy born in 1954 with significant intellectual and physical disabilities during a time when resources, services, and understanding were almost nonexistent. Doctors labeled Stephen “deficient.” Institutions were recommended. But Stephen’s parents chose a different path — one rooted in fierce love, hope, and belief in their son’s humanity.

In his memoir For the Love of Stephen (with a foreword by Temple Grandin and now housed in the Library of Congress), Dr. Jones tells the story of a life that many misunderstood — and a family who refused to see Stephen as broken.

This conversation explores:

• How society often responds to disability with fear or pity
 • Why dignity begins with truly seeing one another
 • The role of siblings as protectors and advocates
 • How parents can teach children to approach difference with curiosity and kindness
 • Why hope is often something we choose — not something that simply arrives

As Stuart says, “Different is not less.”

This is a conversation about love, advocacy, belonging, and the quiet power of recognizing the worth of every life.

Connect with Dr. Stuart D. Jones here.

Find his book: For the Love of Stephen - here.

If this episode moved you, please share it with someone who needs to hear it.

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New episodes drop every Monday, so you can begin your week with a little light and a lot of hope.

For more stories, reflections, and ways to connect, visit www.DanielleElliottSmith.com or follow along on Instagram @daniellesmithtv and @HopeComestoVisit

Transcript

abeled Broken In 1954

Dr. Stuart D. Jones 0:00

Stephen was labeled broken. I mean, back in his day in 1954, they had all kinds of euphemisms for special needs, right? Crude terms like mentally retarded, crude terms like slow. One doctor called him deficient, in many respects, deficient. So they had many terms, right? But they said, you know, your child's broken. Hey, Keith and Phyllis Jones, my parents, your child's broken. My parents were like, oh no, they're 18 years old. Oh no. What do we do with a broken child? And my father's own mother said, put him in an institution. You know, visit him every now and then. The doctor said, Yeah, there's some good institutions, state homes. Put him in a home. My parents said, no. Isn't that wonderful that an 18-year-old had the ability to have hope and said, Love conquers this diagnosis?

elcome And Why Stephen Matters

Danielle Elliott Smith 1:01

Let's take a quick moment to thank the people that support and sponsor the podcast. When life takes an unexpected turn, you deserve someone who will stand beside you. St. Louis attorney Chris Duly offers experienced one-on-one legal defense. Call 314-384-4000 or 314-DUI HELP. Or you can visit Dulilawfirm.com. That's D-U-L-L-E Law Firm.com for a free consultation. There are stories that don't just change how we feel, they change how we see. Welcome to Help Comes to Visit. I'm Danielle Elliott Smith. Here we make space for stories that stretch us, steady us, and remind us what matters most. Today's conversation is about dignity, about disability, about the sacred worth of a life that the world may misunderstand. I'm thrilled to be joined today by Dr. Stuart D. Jones, educator, speaker, and author of For the Love of Stephen, the story of a boy who is never broken. After a 30-year career in higher education leadership and 10 years in Christian ministry, Stuart has devoted this season of his life to sharing the story of his brother Stephen through his new memoir. With a forewrandon and now housed in the Library of Congress, Stewart's memoir shares the story of his brother Stephen, and in doing so, invites us to reconsider what whole, valuable, and worthy truly mean. This is a conversation about fierce love and the kind of hope that grows when we see someone exactly as they are. Stuart, I'm so excited you are here with us today. Thank you for making time for us.

Dr. Stuart D. Jones 2:39

Oh, Danielle, this is my pleasure. Thank you.

Danielle Elliott Smith 2:42

No, I'm I'm thrilled. You know, when you when you first reached out, I thought this is a conversation I haven't had on Hope Comes to Visit. And I'm I love sharing. I mean, the purpose of the podcast is to share stories of hope that can inspire people in different seasons of their life. And this is a season you're choosing to dedicate to your brother, to educating other people. And and I love that. So tell us how you decided that this was your new mission, was your new goal.

riting The Memoir After Loss

arly Life Without Special Education

Dr. Stuart D. Jones 3:17

Yeah. When my brother Stephen died tragically about 20 years ago, uh, about five years after that tragic death, I thought to myself, I really want to do a book about Stephen because he was born at such a unique time in the world of intellectual disabilities, in a time when special education didn't exist. Resources and services were nowhere to be found. And I thought, I've got to write this story because my parents did a heroic job of having hope in the ability to give him the fullest life that they possibly could without services and resources, trying to give him a wonderful life of dignity, of inclusion, of people being able to understand everybody matters in this world, regardless of ability. So I wanted to write the book. And by golly, it finally took retirement, me now working 60 hours a week, and to say, now I've got the time. Dude, you're out of excuses. You need to sit down. And I felt like there's a moving within me that I've got to write this book. So I began to do what sometimes authors crudely call word vomiting. I just started to write and write and write, and it started to come together. So that's why I wanted to. I felt like Stephen's story should be told because it is a story of hope for a lot of people, anybody who reads the book.

Danielle Elliott Smith 4:49

Well, let's start here. Tell me about Stephen.

Dr. Stuart D. Jones 4:54

Stephen uh was the first of our family. My parents were, as the book shares, my parents were just young and 18 years old when they had to get married. And Stephen was their first child. And in 1954, when he was born, he was born prematurely and um had a myriad of problems after birth, almost died after birth. Was put in uh uh what was back in the 1954, a fairly crude incubator, which also caused uh retinal damage for the poor baby as uh as he grew. But he was fragile, he had a fragile life from the very start. And here's my parents, 18 years old, they barely were out of high school, didn't know how to navigate marriage or the world or the world of work or anything, and now they have a special needs child. Then my father gets drafted into the military, and they've got to move halfway across the country with a special needs child, and their life just kind of becomes a myriad of challenges.

Danielle Elliott Smith 5:55

Of course.

Dr. Stuart D. Jones 5:56

And their ability to navigate that was interesting. Stephen, uh, yeah, disability wasn't his tragedy. Disability was something he had to get the world to recognize as a reality. Disability was something he had, but the world needed to understand that he could live a full life to the best of his ability. I mean, in the 1950s and 60s, as I said, resources were scarce, special education didn't exist. My parents tried to put him into a basic kindergarten class for what we call neurotypical children who have cognitive abilities, no problems. Stephen couldn't pass kindergarten. And it wasn't until kind of a fateful day that my parents discovered they lived near Lafayette, Indiana. And they discovered through a newspaper article that Lafayette and Purdue University were kind of on the cutting edge of theory and learning how to deal with children with special cognitive or developmental needs. And they moved to Lafayette, Indiana and started a journey by which they wanted to see what we can do for Stephen to allow him to learn, to allow him to develop, to grow in every way possible so that he could possibly live the fullest life. And that journey, that journey, Danielle, oh my goodness, it was fraught with triumphs and tragedies. It was fraught with successes and failures, it was fraught with a with an interesting journey where Stephen did develop and grow by the grace of God and by the help of champions in his life. But the story is just so compelling and I'm so appreciative that those who read it have said, oh my God, as you said earlier, Danielle, the people who've read it said, not only did this touch my heart, it changed the way I'm thinking from now on about those with special needs. I'm not going to marginalize them, I'm not going to exclude them. I'm not going to be afraid of them. They are people whom God has created and people who I would be blessed to get to know. And that was just all part of Stephen's journey until he was tragically killed at age 52. And then, like I said, then we come full circle where I felt like I needed to tell his story for the purposes of hope. Parents who need this kind of hope, siblings, siblings who grow up with special needs, uh, brothers or sisters. It is a story of hope. And I want people to have hope. But just because doctors and clinicians and educators label your child, diagnose your child, tell you what they can't do, there's so much they can do. There is so much possibility, and parents and siblings and everybody needs to have hope in what this human being is capable of. Does that make sense? I hope.

he Pity And Fear Problem

Danielle Elliott Smith 8:59

Absolutely. What mistakes do you think people make most frequently when they even well-meaningly speak about or address people who are born with disabilities?

Dr. Stuart D. Jones 9:14

I think a couple things. One is pity. Okay. Usually people respond to those with special needs, like my brother Steve. They respond in one of two ways: pity or fear.

Danielle Elliott Smith 9:25

Okay.

Dr. Stuart D. Jones 9:26

And being able to remove both of those barriers, we can then see an individual and the person behind the labels or the disability. Those are the two most uh, I think the two biggest barriers. I mentioned that in one of my early chapters, that it is, it's not a judgment on my part. It's not a judgment at all, that people tend to respond to those with disability with fear and discomfort. Oh gosh, I don't know what to say to them. Oh gosh, I should I shake their hand? Should I say hi? You know, they're different than me, and that makes me feel awkward and uncomfortable. Right. So the ability to get past your own barrier, your own preconceived discomfort and your notions about what disability is, and see a human being, someone you would you should just meet like you would anybody else.

eaching Kids To Approach

Danielle Elliott Smith 10:23

Right. So it is it's something that we have to work on ourselves. Is there is there a good way to do that? Because you mentioned fear, right? So how can parents teach children to have traditional curiosity, to have traditional heart and hope around other children with disabilities?

Dr. Stuart D. Jones 10:49

Yeah, all they can do is just what you did, the the operative word is teach them. I have a friend who's written a book about how to move beyond that barrier and how to befriend people who are different than themselves, people with disabilities, right? And parents have the role of just simply saying to their child, hey, when you see somebody different than you, make sure you understand that there's somebody that could be your friend and you want to meet them and say hi and get to know them and not be fearful. Because again, basic human instinct is, oh, I don't know what is going on there, but I'm fearful of it. The ability to then say, Well, that's not going to stop me. I'm going to approach that person and get to know them anyway. That's what parents can try to teach and to make sure their children really are meeting those who are different, as we say, than their child is and getting to know them. I guess I've seen a little bit of that, Danielle, when I substitute teach at a high school here locally.

Danielle Elliott Smith 11:55

Okay.

Dr. Stuart D. Jones 11:55

Children with different special needs are integrated now, thank goodness. Stephen was one of the first of his class to do that. But I'm really proud when I see neurotypical children befriending, being kind, and helping those who are different than them, who are neurodivergent than they are themselves. That makes me so proud. But still, there's also a lot of kids at the high school who are afraid to approach. Parents have the opportunity to teach their kids to approach, to be kind, and to treat them like anybody else. They don't want pity. None of them want pity. They want to be included. They want to be included in Steam.

Danielle Elliott Smith 12:36

They want to be treated like they are whole. I mean, your title says so much, you know, recognizing that it wasn't about Stephen being broken. Um and I think that that is such a beautiful, hopeful message, right? I mean, that when people struggle with something rather than treating them as though they are broken, treating them as though they are whole, and they have something to teach us.

Dr. Stuart D. Jones 13:02

Yeah, that Stephen was labeled broken. I mean, back in his day in 1954, they had all kinds of euphemisms for special needs, right? Crude terms like mentally retarded, crude terms like slow. One doctor called him deficient, in many respects, deficient. So they had many terms, right? But they said, you know, your child's broken. Hey, Keith and Phyllis Jones, my parents, your child's broken. My parents were like, oh no, they're 18 years old. Oh no. What do we do with a broken child? And my father's own mother said, put him in an institution. You know, visit him every now and then. The doctor said, Yeah, there's some good institutions, state homes, put him in a home. My parents said, No. Isn't that wonderful that an 18-year-old had the ability to have hope and said, Love conquers this diagnosis.

Danielle Elliott Smith 13:57

And the the parental instinct to say, oh no, no, no, no, I will champion my child.

rowing Up As Stephen’s Sibling

Dr. Stuart D. Jones 14:04

Yeah, Stephen wasn't broken. What was broken, Danielle, and sometimes is still broken, is people and society's ability to see them. That's what's broken. Our inability to see them as human beings and of value and of worth. People who can work, people who can laugh, people who can tell jokes, people who can do a myriad of things, right? They just have different ways of functioning. As Temple Grandin, my friend, says, different, not less. Just different, not less. And boy, I couldn't agree with that philosophy more.

Danielle Elliott Smith 14:41

What was it like for you growing up as a sibling who had a brother who had special needs who was labeled with less than terms?

Dr. Stuart D. Jones 14:53

Yeah. I've talked about this at length with my older sister, and I have another older brother. I was the youngest of four. We actually had five, but one boy, as the book will share, one of our brothers died early at age 15 months. But as we've talked before, you know, we grew up with Steve, and the wonderful thing about my parents is they treated Steve like they treated us. Right. Right? They didn't coddle him, they didn't conjole him. Steve was treated like Steve. And we didn't even, as my sister says, we didn't even know he had an intellectual disability until we were like in junior high school. And the reason I became aware of it, Danielle, is because I saw kids starting to pick on him.

Danielle Elliott Smith 15:34

Okay.

Dr. Stuart D. Jones 15:35

Steve also had a very severe skin condition. As I mentioned in the book, the genetic tree, Steve fell out of the bad luck genetic tree and hit every branch on the way down. Okay. Everything from uh ichthyosis vulgaris skin condition to practically being blind with huge, huge aquarium type glasses, webbed feet, short, stumpy. The poor guy, he just had, he looked different and he was different. So kids made fun. Right. That's when I became aware that, you know, why are you making fun of my brother? I love my brother. He's my best friend and he was my best playmate. We spent hours together growing. And my brother and sister had the same challenge. You know, yeah, okay, so Steve is a little different than the rest of us, but by golly, we became his protector. More than anything. My parents were the took the role of educator. Uh, and enabling him to become independent as best he could. We took the role of being protector because he would went to school or he went to church or he went to Boy Scouts. He was in the Boy Scouts and he joined 4-H. They didn't have special programs for intellectually disabled children. So he joined regular Boy Scouts, regular uh 4-H. But we had to protect him because it was quick. It was so quick for people to judge, be afraid, not like him because he was different, and then to pick on him. And he was bullied, sometimes mercilessly bullied, and we had to be there to defend him. So I felt protective of him, and I felt that way all through life. The book covers a couple unpleasant chapters that are called The Vultures That Circle. And they're true stories about people that took full advantage of Steve and his intellectual inability to discern con artists and people that were robbing him behind his back. Those were things we tried to shield him from, but we couldn't always. And so there was a sensitivity that we had. And Steve was very cognizant, Danielle. Steve knew when people were uncomfortable with him. They just he could sense it. But when you included him and you gave him a hug and you shook his hand and you smiled, oh my gosh, he was your friend forever. Whether you wanted him to be or not, he was now your best buddy. He just wanted to belong.

Danielle Elliott Smith 18:04

How would you describe him?

hat Readers Should Take Away

Dr. Stuart D. Jones 18:07

Yeah, I describe him in many ways in the book. I think the best way I can describe Steve is he was so kind-hearted and inclusive of people, welcoming of people, to a fault. We grew up in the church, so not only was Steve just naturally a good-hearted, kind person, he was also taught to love thy neighbor no matter what. So he always I would describe him as somebody that just gave of himself willingly. And sometimes people took advantage, and sometimes they didn't. But Steve was just so kind-hearted. He was fun, he was funny. He had such a great sarcastic sense of humor that we all would bust out laughing, because he would just say things very dry with a sense of humor, sarcastic, and we all just would bust out laughing. You know, he had the mind of a child, but he sometimes had the wisdom of an adult. And he was just very giving. If you literally, Danielle, because this is true in the book, and there's stories. If you ask Steve for the shirt off of his back in December weather when it was cold, he would say, Okay, you need my shirt, I'll give you my shirt. That's just true. And I gosh, I wish I could be more like that. But we know we grew up so skeptical and cynical and afraid of what people are up to, right? Steve just gave and he loved, and he taught me that. He taught me how to love first. Love unconditionally first, and then you can sort out the other stuff later.

Danielle Elliott Smith 19:48

What do you hope people take away from the book?

Dr. Stuart D. Jones 19:52

I hope they take away from the book that people with special needs are people created in the image of God. Whether you believe that or not, religiously, it's okay. I understand. They're created in the image of God, and they are people who are here for a purpose. One of my chapters is called God Don't Make No Junk. And it was a sermon preached at our home church growing up, and it changed my thinking, and I wanted to change people's thinking. God doesn't make junk, God makes us all for a purpose. Steve had a purpose in his life, and he fulfilled it. And I want people to see that. And I want people not only to see that, but to befriend those with special needs and to be their champions. Don't ever let these people come to harm. You know, have hope in them, have belief in them, and protect them because many times they can't protect themselves, and many times they can't speak for themselves. So we have to be their advocates and their champions. That's what my friends and those who've done book reviews, clearly I've gotten from their book reviews. That's what's changed in their thinking. These are human beings. I need to be their friend, and I need to protect and advocate for them when the situation calls for that.

dvocacy Through Groups And Churches

Danielle Elliott Smith 21:10

I know in addition to writing the book, you've mentioned that you you do advocacy work and we're, you know, March is um disability awareness month. What type of additional advocacy are you doing, or would you suggest others do?

efining Hope As A Choice

Dr. Stuart D. Jones 21:26

Yeah, both my brother and I, my brother Scott, who's part of the book, uh, we are reaching out to all kinds of advocacy groups. Uh, The ARC is a national organization that has some 600 chapters across the country. I am on a mission to meet with as many of those in Indiana, eventually Michigan, Ohio, Illinois, around me, as many as I can. I've met with some advocacy groups here in the city of Fort Wayne. I'm simply trying to see what I can do. I'm not trying to promote my book. I'm trying to promote a message, right, about helping others when we can, as we can. Um, so the ARC takes up the cause of advocating for those who can't advocate for themselves, whether it's with bills being passed by the Indiana legislature, the National Congress, they're fighting for the rights of people with disabilities. And I'm taking up that cause too. I'm doing both that and I'm actually trying to place myself in churches as I filled pulpits because of my Christian ministry years ago. I'm also trying to teach Christians about God, don't make no junk. And these people are beautiful people that you want to have as part of your life. That's the hope. I'm trying to spread, I guess, a message of hope uh for these individuals, working with advocacy groups and churches. So it's been a good journey so far. And I hope as long as God gives me breath, I'll just continue that journey, right?

Danielle Elliott Smith 23:02

I love that. Stuart, how do you define hope?

Dr. Stuart D. Jones 23:05

Hope is something I think we choose. Hope is something that gives us the ability to believe. Why I say we choose it is sometimes I've learned in my own life that people think hope is something that I'm waiting on hope to hit me. I'm waiting that something will happen that changes and gives me hope. My parents didn't do that. My parents realized we had to choose hope, and that's what made the difference. Hope is something sometimes you have to choose. I am going to be hopeful. I'm not going to wait for some miracle thing to hit me in the face that says, ah, now I can be hopeful. No, I'm going to choose hope today, and I'm going to look for hope, and I'm going to pursue hope in my life and in the lives of others. So for me, hope is that wonderful feeling of faith and the ability to know there's a purpose. I need to serve that purpose. I need to assertively pursue that hopeful purpose in my life and the lives of others. Gosh, I sound like a sermon now, don't I?

here To Find Stuart And Book

Danielle Elliott Smith 24:13

No, I love it. I love it. Where can people find you and where can they find the book? For the love of Stephen.

Dr. Stuart D. Jones 24:19

Yeah, I have a simple website that um shares a lot about me, shares a lot of information about uh the disabled community. It's it's a www.authorstewart Jones, S-T-U-A-R-T. Autherstewart Jones.com is my website. I hope people will visit. There's some inspiring poems and stories in there. That's where they can find me, and they can contact me through the website. I've got my gosh, got my phone number, my email published everywhere for sure. So I hope they'll find me there. The book is available. I usually promote it to Amazon. Amazon's got the print, the ebook Kendall version, the audio book that I made myself and narrated. But it's on over 50 book platforms across the world. Goodreads, Farms and Noble. You can just Google it. You'll find it. I promise you'll find if you look up for the love of Stephen, you'll find the book easily. And you can find my contact information as well. Please contact me. I love getting contacts. People who have writ have written me, told me stories, sharing their stories, and inviting me to come speak or to be a part of anything from a book club. And today, an invitation to go to a library and present. I'm retired now and I'm on a mission, so contact me.

Danielle Elliott Smith 25:38

I love it. Thank you so much for spending time with me. I am thrilled for you. I think the messaging of hope is beautiful. And I am 100% sure Stephen is so proud of the work you're doing.

Dr. Stuart D. Jones 25:52

Thank you. You're going to make me cheer up, Danielle. Thank you. Thank you for your time.

Danielle Elliott Smith 25:58

Thank you so much for being here. And what a gift this conversation has been. Stuart reminds us that hope isn't about fixing what we think is broken, it's about recognizing that some lives were never broken to begin with. It's about dignity, fierce love, and truly seeing each other fully. If today's episode moved you, I encourage you to seek out for the love of Steven. As Dr. Stuart Jones mentioned, you can find it on Amazon. And of course, go ahead and share this episode with people that you love. Thank you so much for being here. Until I get to spend time with you again, take very good care of you. Naturally, it's important to thank the people who support and sponsor the podcast. This episode is supported by Chris Dulley, a trusted criminal defense attorney and friend of mine here in St. Louis, who believes in second chances and solid representation. Whether you're facing a DWI, felony, or traffic issue, Chris handles your case personally with clarity, compassion, and over 15 years of experience. When things feel uncertain, it helps to have someone steady in your corner. Call 314-384-4000 or 314-DUI HELP, or you can visit DulyLawfirm.com to schedule your free consultation.