Disability Awareness That Matters: Insights from Diana Pastora Carson ~ 913

Tim Villegas:
Steak is coming. If you don’t know what that means, you will in a minute. And if you want a preview of our conversation with Diana Pastora Carson, watch her TED Talk, “Walking with Joaquin” about her family’s journey to bring Joaquin home after 15 years of living in an institution. We’ll put a link in the show notes. But to set up this conversation with Diana, I wanted to play a clip from her TED Talk—the moment she tells Joaquin that he’s coming home.

Diana Pastora Carson:
When we were in the process of fighting to get Joaquin released from the institution—a fight that took three years—my mother asked Joaquin, “What would you like to be your homecoming meal when we finally get you out?” And he said, “Steak.” And I don’t know why he said steak. We didn’t really eat steak growing up. We were more of a rice and chicken kind of family. But he said steak. And we later realized for those three years, he kept saying, “I want steak. I like steak. Steak is coming. Steak is coming.” And I’m wearing the necklace that says “Steak is coming” right now. He kept saying that, and we realized that was his metaphor for what he knew he needed and what he deserved—and that was life quality. So here’s the day we announced to him that he was going to finally get that steak.

Diana Pastora Carson:
What happened at your meeting, Joaquin? Listen for a second. What happened is it was decided that you get to come home on November 4th, which is 21 days. Oh, what do you think?

Joaquin:
Are you ready? What the hell, bi***?

Diana Pastora Carson:
What do you think?

Joaquin:
I want steak. I want steak.

Friends:
Congratulations, buddy, that’s less than a month away.

Tim Villegas:
My name is Tim Villegas and you are listening to the Think Inclusive Podcast. This podcast exists to build bridges between families, educators, and disability rights advocates to create a shared understanding of inclusion and what inclusion looks like in the real world. To find out more about who we are and what we do, check us out at thinkinclusive.us or on Facebook, Instagram, or Twitter.

Today on the podcast, I interview Diana Pastora Carson, the host of the Beyond Awareness podcast. We talk about what her journey has been like as an educator who advocated for inclusive education, what it’s like now that Joaquin has been home for close to 10 years, and why she started the Beyond Awareness podcast. I’m so glad you’re here. Thanks for listening, subscribing, and rating us on Apple Podcasts or Spotify. And now, our interview with Diana Pastora Carson.

Tim Villegas:
Okay. Today on the podcast, we have Diana Pastora Carson, who has been an educator for over 30 years, teaching both at the elementary school level and the university level. She is a consultant and trainer on diversity as it relates to disability and is the author of several articles and books, including Beyond Awareness: Bringing Disability into Diversity Work in K-12 Schools and Communities, as well as her children’s book Ed Roberts: Champion of Disability Rights. She is the host of Beyond Awareness: Disability Awareness That Matters podcast. Welcome to the Think Inclusive Podcast, Diana. It’s a pleasure to have you.

Diana Pastora Carson:
Thank you, Tim. It’s really exciting to be here today. Thanks for the invite.

Tim Villegas:
Yeah. Yeah. So we’re like swapping guest spots on our podcasts. This is awesome.

Diana Pastora Carson:
It was lovely to have you on mine. Thanks for stepping out into my new world of podcasting and braving the territory and being a guest for me. I loved your interview with me.

Tim Villegas:
Of course. Yeah. Very happy to do it. So I’m excited for our audience to hear your story. I know that you wrote your book, and I just recently saw your TED Talk, which we will link to in the show notes. But why don’t you just introduce yourself to our audience and say who you are, and we can kind of jump off from there.

Diana Pastora Carson:
Sure. Well, you mentioned all my teaching experience and that I’m a public speaker and have a TED Talk. I also am a community activist and advocate. I’ve served two terms on the board of directors of Disability Rights California, and currently I serve on the board of directors of Disability Voices United. But one thing that’s not in the introduction is that I am a fierce sibling advocate. My brother Joaquin is one of my closest relationships in life. He always has been. I’ve often said that I feel like we are twins, even though we’re a year apart.

And I have to say this anytime that I speak and share the story of our journey together—our journey toward inclusion—I have Joaquin’s blessing. I have his consent to share this with the audience. He wants me to share the story. He has made that well known. He’s been in the audience at conferences. He has helped me and co-presented with me. And if he’s not co-presenting with me, he’s out in the audience saying, “Right on, baby.” He loves to hear his story shared. And even with the podcast that he’s been listening to, he’s been encouraging me to keep going.

So Joaquin was the product of a school system that had no clue back in the 1970s when IDEA was passed—no clue about what inclusive education would look like. He was placed in a special classroom that did a lot of aversive conditioning methods. It was all about compliance training and control until a day when he was in the timeout closet for way too long and had a bowel movement inside the closet.

Diana Pastora Carson:
My mother was called and told she had to come get her son and that he couldn’t go to school there anymore. So my mom came and cleaned the timeout room. She cleaned up my brother and walked home with Joaquin. He was then placed in a non-public school for children with autism, and he was there for 10 years. It was all that was offered. It was all that was available.

For 10 years they had all kinds of “modern” techniques. They had timeout rooms, of course, but they also used spray bottles to squirt him in the face with water if he was not compliant. If he tried to aggress or bite somebody because they were treating him in ways that were not dignifying, they would spray him in the mouth with vinegar. They also did restraints with him—the head-down procedure where they would have him sit crisscross applesauce with his hands behind his back and his head touching the floor. If he didn’t do it voluntarily, they would forcibly keep him in that position with two or three people, sometimes five people holding him down.

So he was basically tortured throughout his childhood education every day in order to “help him.” Then he ended up at age 17—and I’ll make this long story very short—his school gave my parents an ultimatum: if he didn’t start taking psychotropic medications to control his behavior, because they couldn’t control him anymore, he would have to leave. He was six feet tall, weighed 200 pounds, and they said, “We can’t control him.”

Diana Pastora Carson:
My parents finally relented after about a year or two of the school begging them to do so. My brother had a horrible reaction to these medications. They were basically horse tranquilizers—Thorazine. Joaquin, who loves to ride bikes, run, skateboard, skate, swim—he’s coordinated as can be—was on the floor having seizures as a result of these medications.

My parents tried to get help. There was nowhere to call, nobody they could turn to. There was no internet. So they started to play around with his meds themselves, thinking they could help him. It didn’t work. This young, beautiful man became psychotic and dangerous as a result of these medications.

One day I came home from high school and saw my mother, who was ill, lying on the sofa crying. My father was straddled over Joaquin. Joaquin was naked, sweating profusely. My dad was sweating so heavily that drips of sweat were rolling off his nose onto Joaquin. My dad was holding his hands in place and had been in this position for two hours trying to keep Joaquin from destroying the house and hurting himself and my mom. I’d never seen my dad cry, but he was crying and said, “Diana, I need you to go to the garage and get a rope.”

So I went and got a rope, and my dad tied Joaquin’s hands and feet together. Then he called Joaquin’s social worker. The only person available was another father of a young man with autism. They cried on the phone together. My dad said, “I need help. My son needs help.” The man said, “Mr. Carson, I’m so sorry to have to tell you this, but you’re going to have to untie your son. And I’m going to have to call Child Protective Services. First thing in the morning, you have to drive your son to the state hospital, which is two hours away.”

That was our family’s first trip to the institution in Orange County, California. Joaquin actually lived there twice in his life—once for eight years and once for seven years, with a group home stay in between. So a total of 15 years in an institution.

Diana Pastora Carson:
As I got older—back then I was a teenager—but as I got older, I decided I wanted to be a teacher. I wanted to make a difference for kids like Joaquin. I knew there had to be something I could do to change the future for someone else. At the same time, I started educating myself, getting to know people in the autism and disability advocacy space, learning about dignity and disability studies.

I became one of the people my parents stepped aside for so I could support Joaquin—learning about alternative communication, supported typing, seeing what Joaquin really wanted in his life, and honoring his communication. Not just hearing it, but saying, “Okay, Joaquin doesn’t want to live here. We’re going to find a way that works for him.”

I remembered as a kid, we always loved the country. Our family would drive to the country because it was the only place we could go without people staring or making rude comments. It was where Joaquin felt free. So I knew: we need Joaquin to have his own place, not another group home. We need a supported living option.

My husband and I bought a home in a rural area with a barn. We renovated the barn and “Joaquinified” it—custom-built for him so if he has a rough day, he can’t hurt himself. It’s indestructible. And on good days, it’s still home. Our favorite song is “Country Roads, Take Me Home.” We sing it together.

At the same time, I started asking: why did this have to happen? What’s going on in our education system that routed him this way? By chance, a friend asked me to co-teach a disability studies class when she went on maternity leave. I realized—even with a master’s in special education—I didn’t know enough about the experience of disability.

So I dove in. I read books. And it upended my world. I had been doing simulation activities in schools to create sensitivity for students. I thought disability awareness would make a difference. But once I started teaching disability studies, I realized I had it all wrong. What I was doing caused more harm than good. I needed to create a different way of doing disability awareness—from a disability studies perspective, from the voices of people who actually experience disability.

Not me putting Vaseline on glasses and saying, “Now you know what it’s like to be blind.” No. You’re not going to know what it’s like in five minutes or an hour. You won’t understand what it’s like to be disabled by societal barriers until you’ve walked that walk as a person.

Tim Villegas:
Oh, I love that. Let’s camp out on that for a second because that is so interesting. These activities to simulate disability automatically assume that the body or brain is the barrier, right?

Diana Pastora Carson:
Exactly. And that’s the problem. We’re not looking at the person as the problem. Society is the problem. The barriers are the problem. Ableism is the problem.

Diana Pastora Carson:
The word access is key. Access is everything. When you amplify the voices of people sharing their stories—about not having access, about encountering ableism, about the impact of assistive technology or having a voice honored—things change. When you learn disability history, not just modern history and legislation from the ’60s and ’70s, but thousands of years back, and correlate that with how we treat people now, students’ eyes open up. They get it—probably faster than adults.

That’s what I’ve learned. We had the best of intentions. I thought I was doing the right thing, but I wasn’t. If I really want to make a difference for the Joaquins of the world, I have to approach disability awareness differently. I have to approach being a sibling differently. We have to look at it from a social model and social justice perspective. Are we going to be allies for people—whether they’re blood-related or not?

That necessarily includes people with disabilities—communication, cognitive, physical, mental health, learning disabilities. We need to learn what the barriers are and how to remove them. How can we implement universal design for learning—not just in classrooms, but in everyday interactions? How do we design conversations to be inclusive and nurturing for everyone?

Tim Villegas:
So tell us about Joaquin now. Where is he? Maybe finish the story of him getting out and what he’s doing now.

Diana Pastora Carson:
For the last three years of him being at the institution, their goal was to titrate him off medications. Both times he stayed there, it was because of psychotropic meds he was allergic to. It took four years to get him off. Once we did, I said to the regional center and state hospital, “We have a place for Joaquin. He wants supported living.” They said no—he didn’t qualify.

We fought. We went to court for a year and a half and lost. It was devastating. But we didn’t give up. My mom asked him, “When you come home, what do you want for dinner?” He said, “Steak.” For the rest of his time in the hospital, he kept saying, “Steak is coming.” That became his motto.

Finally, we won. He came home. We moved to the outskirts of San Diego on eight acres. Last month, we celebrated 10 years. Ten years he’s been home. We were told it couldn’t happen—that he was a danger to society. But we made it happen.

Joaquin hasn’t changed. He has good days and bad days, but now he has them in a place where he’s loved and honored, with a community that cares for him. Neighbors bring him gifts, honk when they pass, give him Harley rides. He could have had that so much sooner if he’d been included in school, if teachers had understood.

Tim Villegas:
What would’ve made a difference for Joaquin in elementary school?

Diana Pastora Carson:
Knowing his voice mattered. Presuming competence from the start. Providing ways to communicate—not just choices in the cafeteria, but real communication. Prioritizing professionals who support communication early on.

When he first came home, I read Eyes on the Prize with him. He sat for an hour, listening and looking at pictures. He had never learned history before. If he’d been included, he might not have shown the same level of understanding as others, but he deserved the opportunity. We did him a disservice by not empowering him academically and socially.

Tim Villegas:
Let’s talk about your podcast. Why a podcast, and what do you hope to accomplish?

Diana Pastora Carson:
The podcast is brand new—started in December. I love talking to people. I’ve met so many amazing advocates and wanted to share that network. When I left teaching during the pandemic due to a medical crisis, I felt guilt and shame, but then I realized this was my opportunity.

I want teachers interested in inclusion and diversity to have a resource. Many want to do disability awareness but don’t know how. This podcast is the answer. Guests share what actually matters—what makes a difference long-term for students and staff. It’s called Beyond Awareness: Disability Awareness That Matters.

Tim Villegas:
Where can people find more about you?

Diana Pastora Carson:
I have a free ebook, The Five Keys to Going Beyond Awareness, at https://www.gobeyondawareness.com/keys. I also have a digital course for schools, my book Beyond Awareness on Amazon, and a children’s book Ed Roberts: Champion of Disability Rights. And, of course, the podcast—available everywhere.

Tim Villegas:
All right, well, Diana Pastora Carson, it’s been a pleasure to have you on the podcast. We appreciate your time.

Diana Pastora Carson:
Thank you, Tim.

Tim Villegas:
That will do it for this episode of the Think Inclusive Podcast. Subscribe via Apple Podcasts, the Anchor app, Spotify, or wherever you listen to podcasts.

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We’ll be back with another Think Inclusive episode in a couple of weeks, and look out for more editions of the Weeklyish and bonus episodes in the meantime. Thank you for your time and attention and for listening. Until next time, remember: inclusion always works.