Please note: Accuracy and availability of IPR transcripts may vary. 00;00;00;05 - 00;00;23;13 J.R. Jamison Jamison: We've all seen and read the stories of those with disabilities, portrayed a secondary characters there in the background to support the able bodied lead in their quest for love, adventure and success. But what if the script were flipped? And those with a disability were the main character of their own story finding, well, love, adventure and success? I'm J.R. Jamison. 00;00;23;13 - 00;00;37;19 J.R. Jamison Today on the Facing Project, we explore reclaiming the disabled narrative. 00;00;37;21 - 00;01;03;27 J.R. Jamison The word disability can mean a variety of things. It covers a vast spectrum from physical to intellectual. It can be outwardly noticeable or sometimes not that noticeable at all. But the commonality among all people with the disability is the right to own their own story and tell it however they choose. Far too often, though, they have been regulated to the background by able bodied people or shared as a sob story to tug at heartstrings. 00;01;03;27 - 00;01;30;23 J.R. Jamison And let's be honest, because society has programed itself to focus on the ins and outs of able bodied people and centering their stories, it's continue to perpetuate the stereotype that anyone with a disability needs constant care and attention that can only be given by able bodied people. Of course, that's absolutely just not true. That's why today we're focusing on individuals with disabilities who have reclaimed their narratives. 00;01;30;26 - 00;01;51;09 J.R. Jamison We'll hear from a polio survivor who loves to dance. A former runner with an autoimmune disorder who is finding a new path, and a college student with autism who ask us to pay attention. Later in the show, I'm joined by global disability influencer Monica Engel Thomas, who is reclaimed her own narrative and uses it to inspire others. 00;01;51;11 - 00;02;22;23 Beth Nahre Nahre: Carry. Sandy Penrod’s story as told to Jennifer Stanley, performed by Beth Nahre. I learned to walk when I was two. Until then, I was carried or scooted myself where I needed to go because the iron leg braces I wore went from the bottom of my feet to my hips and wouldn't bend at all. But even after I got the motions down, I still practiced every day on the front lawn with the wooden parallel bars my dad made for me. 00;02;22;26 - 00;02;50;19 Beth Nahre Our neighbors sat on his front porch steps across the street and watched. He always cried big, fat, silent tears. I didn't understand why my neighbor cried for me. I've always had a spirit of determination. Being a polio survivor is all that I know. I contracted polio during the epidemic in 1949. I was nine months old at the time. 00;02;50;19 - 00;03;19;01 Beth Nahre It was the worst fear of parents with young kids. But my mom and dad made the best of it. They treated me just like my siblings and other kids. In the summers before elementary school, I went to Camp Eisenhower to swim and play. There were other children with disabilities. Some kids wore leg braces like me, but others were challenged with different physical limitations or intellectual disabilities. 00;03;19;03 - 00;03;47;11 Beth Nahre We were all the same and that we were different. It was fun and I felt accepted. But all of that changed when I started kindergarten. On my first day at Harry Mock School. I was five years old, wore a size three dress, and weighed 25 pounds. I could barely see over the teacher's desk. I was nervous, just like most new kindergarten students. 00;03;47;12 - 00;04;19;13 Beth Nahre I expected challenges, but I was not prepared for the shock and confusion of being put in the basement. They didn't know what to do with us students with physical or intellectual disabilities. So we went to the basement beneath the regular classrooms for our special schooling. I don't remember much about kindergarten through second grade, but I'm pretty sure I lost more than just proper education down there. 00;04;19;18 - 00;04;48;26 Beth Nahre By the time I went into a mainstream classroom in third grade, my can do spirit had started to fade. There wasn't one particular bully who beat me down. My erosion happened gradually as day after day, year after year. I was the girl without a best friend, the one picked last for teams and the easy target of primary school humor. 00;04;48;29 - 00;05;10;01 Beth Nahre But when I was in eighth grade, my dad decided we were leaving the city and I started at Eton School out in the county. I didn't know it at the time, but my first teacher, Mr. Bixler, told the class, there's a new girl coming today and she's handicapped. Better not ever hear of anyone making fun of her, ever. 00;05;10;04 - 00;05;34;20 Beth Nahre And they didn't. In fact, I met my best friend Cynthia there. We're still best friends to this day. Then the first junior high school dance came and a boy asked me to dance. His name was Rick, and he didn't ask on a dare or because he felt sorry for me. He asked because he wanted to slow dance with me. 00;05;34;22 - 00;05;59;24 Beth Nahre Since then, I've always loved to dance. In high school, my class visited Wyandot Cave in southern Indiana to explore the long, dark and damp terrain of the underground. I knew before we started it would be a difficult path, but it never occurred to me not to go. I was always up for an adventure. During the last stretch, I couldn't walk any farther. 00;05;59;26 - 00;06;19;07 Beth Nahre I simply couldn't go anymore. My friends came around me, laced their hands together underneath me. They took turns making baskets with their arms. And they carried me the rest of the way out. I realized now I never would have gone into that cave if I didn't trust that my friends would be sure I made it all the way through. 00;06;19;13 - 00;06;48;04 Beth Nahre I wasn't afraid because I knew I was accepted and safe. High school was full of fond memories and wonderful friendships. I was even voted most witty in my senior class. I wish I could say that my whole life was happy like I school, but I've had a couple of bad marriages and years when the heartache of my past caught up with me, my determined spirit dissolved. 00;06;48;06 - 00;07;14;29 Beth Nahre I stopped working. I stopped socializing. I stopped caring. I was content to raise my daughter and collect a welfare check. Fortunately, the welfare department didn't want me to stay home any longer. And they found a job for me as a receptionist. Tried to fail my typing test, but they hired me anyway. It was the best thing that could have happened. 00;07;15;02 - 00;07;58;18 Beth Nahre I've been in that job now for over 40 years and I can't imagine working anywhere else. I'm now the administrative manager. I oversee front office duties and client records. Every day I ask myself what my team and I can do to make someone else's job better overall. My life has been good. I'm happily married and I love spending time playing and yes, dancing with my grandkids as often as possible. 00;07;58;21 - 00;08;27;04 Carl Frost Frost: Finding My Way. Antonio Kioko’s story as told to Deidra Lane, performed by Carl Frost. I was vacationing in the Wisconsin Dells and was looking forward to time with family and a chance to start running. I love tall trees. I love winding roads. If I close my eyes, I can see that day. I remember it was so peaceful. Everything was perfect. 00;08;27;06 - 00;08;45;14 Carl Frost And then I wasn't feeling right. As we traveled home. We stopped in an emergency room and the doctor thought it was a stomach flu. But after being back home for several days, I still wasn't feeling well. So I went to my own doctor and then on to the E.R. and no one could figure out what was going on. 00;08;45;17 - 00;09;14;20 Carl Frost Within days, I was struggling to walk. Someone in our church suspected the condition, and they were right. I was diagnosed with Guillain-Barré syndrome, an autoimmune illness which lasts several days and leaves long lasting effects. For months, I required constant care. I learned to walk again, to swallow, to enunciate. I'm soft spoken and now it was even harder to hear me. 00;09;14;22 - 00;09;37;23 Carl Frost I felt like my independence was gone. Eventually I went to work with a walker. I was mentally exhausted the first day, but on the right road. My wife, Ruth and I have always been active in our community. We'd saved up a lot of goodwill. I've always believed in the compassion of others, something I learned from my mom after I got sick. 00;09;37;25 - 00;10;04;10 Carl Frost There are so many people who came to help. Without that, Ruth would have been caring for me by herself. It's important to genuinely invest in people. We need to build lasting relationships and act in a genuine, caring and compassionate way. As difficult as this time was, I found success. I was promoted several times. I co-founded a nonprofit as I learned to dream differently. 00;10;04;13 - 00;10;30;27 Carl Frost I wanted others to find their own dreams. The path you go down may not be the one you thought. People think there is only one way to achieve, but there are always options. You have to believe. Maybe you're asking, what can I do? What you can do is listen and understand, inspire hope or help find solutions. You can enable people to live their best lives. 00;10;30;29 - 00;10;50;14 Carl Frost When you pay attention and hear stories, you find what you have in common. 00;10;50;16 - 00;11;12;05 Charley Isaacs Isaacs: Pay Attention. Carter Tharp's story as told to Jamie Reese, performed by Charley Isaacs. I feel like I'm inside little white box, writing all my thoughts and feelings with a dry erase marker. But no one can find me to understand what I'm going through. I erased those thoughts and feelings myself. But some things I write in permanent marker and they'll never be forgotten. 00;11;12;11 - 00;11;30;04 Charley Isaacs If you could come inside, you would see the conversations I've had with you. The experiences I've shared in the journey of my life. You would understand me, but I cover what I do not want you to see. I put away what I do not want lost. I'll tell you if you let me. Though they may not matter to you. 00;11;30;07 - 00;11;50;16 Charley Isaacs But they matter to me. The secrets of my mind are my secrets. And not for you to know. I don't tell you because I don't see you understanding anyway. You think you do, but you really don't. It's hard for me to look you in the eye. Even harder to be around you. Try learning. When people talk so fast and think even quicker. 00;11;50;19 - 00;12;08;16 Charley Isaacs You don't have the patience to wait for my response. Instead, you avoid my words as if I should know to say what you want me to say. This overwhelms me. I'm going to open this white box for a moment. The first thing people notice about me is that I'm quiet. I'm quiet because I don't know what to say. 00;12;08;19 - 00;12;25;16 Charley Isaacs I see people in a group and I watch them talk to each other. Their lips move, laughter erupts, and their eyes brighten at the thought of the next word they are going to say, instead of words coming to my mind to join their conversations. I watched them and think about their words when they turned to me to join. 00;12;25;17 - 00;12;47;21 Charley Isaacs My mind becomes blank. Everyone I know as an extrovert, they know what to say. I don't know how I'm like other kids with autism. I wish I knew more about autism. I know that I'm not like other kids because I'm quiet. Other kids can pedal a bike. They can lie. If you want me to lie, forget it. The main difference between me and other kids is that they're outgoing. 00;12;47;24 - 00;13;11;11 Charley Isaacs Some are loud, but I ignore those kinds of kids. Being overwhelmed is the worst feeling ever. It makes my brain get dizzy and causes the noises to get louder. It gets on my nerves. Teachers could help by not overwhelming me. The perfect school would have three floors and a big pool. Teachers wouldn't give a lot of homework. The only classes that would be at that school are cooking and science. 00;13;11;13 - 00;13;34;00 Charley Isaacs Science is the best class. Well, the experiments with chemicals are the best part. The stupid work is my weakness. I the village I created on Minecraft. The hideout is hot on camp. The bandits lurk around in the corners. I've created secret rooms and passageways deep underground so they can't find my treasures and livestock. The four is called All Attack. 00;13;34;03 - 00;13;53;15 Charley Isaacs It has an escape path. I'm building a new fort. I think I have a good shot at being a game designer when I grow up. Sure, I have to try harder to learn. Multiple choice tests are not clear. If my grades were based on homework. I'd probably get all A's. My mom helps me through it and she pushes me and makes me work hard. 00;13;53;15 - 00;14;12;26 Charley Isaacs She always judges my writing when I do my homework. Ron. She is there to help me get it right. At least I am not confused about what she wants. Teachers, on the other hand, are not clear. I ask a question about the assignment and they answer me quickly and get back to being busy. Something a little weird about me is that I don't go out a lot. 00;14;13;00 - 00;14;29;25 Charley Isaacs It feels normal to be home. I don't think anyone knows I have autism when they first meet me. If you try to have a conversation with me, you'll realize I am quiet and think about things differently than you do. At night, I curl up with my weighted blankets and bury my head to get comfy. What do you need to know about autism? 00;14;29;27 - 00;14;50;24 Charley Isaacs Feather kids with autism are like me. Then. Here's what you should know. People shouldn't talk like stories. Be more plain. Come out with it. Stop being confusing. Stimming helps me when I am overwhelmed. I tapped the plastic hanger against my legs, arms and sometimes my chin. I also hit it against the back of furniture, which has caused some damage to our couch. 00;14;50;28 - 00;15;08;10 Charley Isaacs If I can't use my hanger then I walk in pace. You might find me gently tapping myself as if I had the hanger. I chew gum when I get home though, I get my hanger. I do it when I want, but only at home. I love to be close to you. It makes me feel safe and to understand you better. 00;15;08;12 - 00;15;31;10 Charley Isaacs I also like to be touched. I used to get my skin brushed, though not so much anymore. I still like it though. Don't think I have forgotten something just because I don't talk about it, I remember. I know what right and wrong is. I'm like everyone else in that area. In reality, I'm better at it. If drawing stick, you should get a stick or a hanger and try stimming. 00;15;31;12 - 00;15;48;10 Charley Isaacs It will help you. All right, I think we're done. I like being heard, but I feel overwhelmed. 00;15;48;12 - 00;16;12;03 J.R. Jamison I recently caught up with Carter's mom, and she shared that he graduated from high school, where he was a member of the National Honor Society and a varsity swimmer for three years. He went on to earn an associate's degree cum laude in general studies and is continuing his education and physical therapy. On top of all of that, Carter has also obtained his lifeguard certification and works as a lifeguard during the summer months. 00;16;12;05 - 00;16;21;14 J.R. Jamison Jamison: I want to welcome to the show Monica Engel Thomas, a disability influencer and Charcot-Marie-Tooth warrior who is reclaiming the disabled narrative. Harmonica. Thank you for joining me. 00;16;21;17 - 00;16;23;22 Monica Engle Thomas Thomas: Hi. Thank you so much for having me. 00;16;23;23 - 00;16;35;24 J.R. Jamison Jamison: I want to start at the beginning. So you were born with Charcot-Marie-Tooth or CMT for short? For our listeners who may not be familiar with the disorder, what is it and how does it impact you? 00;16;35;26 - 00;16;58;28 Monica Engle Thomas Thomas: So Charcot-Marie-Tooth or and I will refer to it as CMT because it's much quicker to say is a hereditary peripheral neuropathy. So it is a genetic progressive disease. And essentially what it means is that the nerves and the peripheral nervous system. So those are the nerves outside of the brain and spinal cord. My brain does not send the right signals to them. 00;16;58;28 - 00;17;30;07 Monica Engle Thomas And so the nerves inside my muscles don't work. They don't stimulate the muscles. And so over time those muscles atrophy and wither away. There's currently no real treatments or cures for it. It is progressive. I was diagnosed when I was just two years old. I started wearing leg braces at the age of five years old, started using a wheelchair in middle school, kind of on and off, and then have been a full time wheelchair user, unable to stand or walk at all for about the last ten years. 00;17;30;07 - 00;17;56;27 J.R. Jamison Jamison: And I've known you for quite some time, and I follow you on all the social media channels and what I find really amazing about the work you're doing. You're reclaiming the disabled narrative by being a disability influencer. You demonstrate products as life hacks for people with disabilities. Recently you did one for Topgolf and it was amazing. I have to be honest, I watched it like 3 or 4 times. 00;17;57;04 - 00;17;59;17 J.R. Jamison How did you get into all of that? 00;17;59;20 - 00;18;27;24 Monica Engle Thomas Thomas: So really it all started with Instagram. I got on Instagram and, you know, just posted selfies like most people do. And then I started seeing the disability hashtags and I started seeing other women in wheelchairs posting their full bodies in wheelchairs, which is something that I had never done. My disability was something that I always tried to hide a little bit, and then I just kind of got to the point where it was like, why am I doing this? 00;18;27;24 - 00;18;54;04 Monica Engle Thomas I'm so visibly disabled, there's no point in trying to hide it. And through these other women that I was seeing, I just decided to start living more out loud. And in doing that, I started connecting with a lot of other disabled people on Instagram especially, and I realized that I had this kind of unique skill set of making the abled world around me work for my disabled body. 00;18;54;04 - 00;19;16;08 Monica Engle Thomas And I realized that this was something that I should share with other people because disability can be so isolating. You're so often left sitting on the sidelines, and I was tired of living that way, and I wanted to show people that we can do fun things. We can, you know, live our lives in this, you know, quote unquote normal way. 00;19;16;08 - 00;19;27;02 Monica Engle Thomas And I just wanted to help people do that. And so that's why I make these videos, to show people these are these hacks that you can use to kind of live and enable bodied world. 00;19;27;03 - 00;19;52;18 J.R. Jamison Jamison: And I have to say too, as someone who is able bodied, I even learn a ton from your hacks, things I would have never thought about that even, you know, regardless of somebody who's able bodied or disabled they're able to use. And I think that is amazing to I know even though your target audience is the the disabled community, are there folks in your life - 00;19;52;18 - 00;20;08;24 J.R. Jamison I know that CMT is a hereditary, and because I know you personally as well, I know that you know others in your family are affected by this. Has your influence, disability influencing, have you seen that impact their lives in a positive way? 00;20;08;27 - 00;20;32;02 Monica Engle Thomas Thomas: You know, I have and I have a very concrete example of that actually. So my dad is he has CMT. His was never as severe as mine. It presented much later in his life. I always give the example of I got my first pair leg braces at five. He got his at 50. So and this past year he got very, very sick with the flu. 00;20;32;08 - 00;20;55;04 Monica Engle Thomas Ended up being in the hospital for a month, completely bedridden. And because CMT is a progressive muscle wasting disease when you're not using those muscles for that long, the atrophy just really speeds along. And so he was having all of these, even though he's had CMT his whole life. He was having all of these new challenges that he wasn't used to transferring from a wheelchair. 00;20;55;06 - 00;21;16;08 Monica Engle Thomas His hands were getting weaker because seemed to, you know, also affects the hands. And so I was able to kind of be his CMT guru for those, you know, those weeks where he was in physical therapy, recovering. I remember specifically being in the hospital room with him, and he was having a hard time pressing the remote buttons, and he turned to me and said, he got any hacks for this? 00;21;16;08 - 00;21;31;22 Monica Engle Thomas And I said, yeah, use your knuckle. You can get more strength there. And he did it. And you know, he was like, all right, that works. And so, you know, I just I really, really did. I hated seeing him go through that, but I enjoyed being able to share that very unique, specific knowledge with somebody. 00;21;31;23 - 00;21;50;17 J.R. Jamison Jamison: Yeah. Close to you thinking about your own journey on reclaiming the narrative. What has been some other favorite moments of yours? You know, connecting with strangers, or maybe it's even a product that you were promoting. Is there a favorite moment that you have? 00;21;50;20 - 00;22;17;15 Monica Engle Thomas Thomas: You know, really, it's any time I get a message from somebody from anywhere in the world that says, your content has helped me, and this way, like, you know, people will message me and tell me that, you know, a video I posted has helped make their life easier in some way, or that the things that I do matter, and I think that's all anybody really wants is for what we're doing in life to matter to somebody, to have some kind of effect. 00;22;17;15 - 00;22;25;09 Monica Engle Thomas And so when I get those messages, it's so validating and it just it feels so good. So anytime that happens that's a favorite moment. 00;22;25;10 - 00;22;35;24 J.R. Jamison Jamison: Yeah. So going back to when you first started this journey on Instagram. Were there others doing similar work who inspired you? 00;22;35;26 - 00;23;03;20 Monica Engle Thomas Thomas: So there are people who continue to inspire me. There is a woman in the UK named Nina Tame. If you should immediately go follow her, she helps break down these stigma surrounding disability and such an accessible way for everybody. I think I see a lot of able bodied people commenting on our posts, like I didn't realize this was something that happened to disabled people like, thank you for sharing this. 00;23;03;28 - 00;23;10;15 Monica Engle Thomas She has been somebody who has inspired me so much. I think that she's absolutely at the top of the list. 00;23;10;17 - 00;23;20;22 J.R. Jamison Jamison: Yeah, yeah. If you could change one thing about how society responds to the disabled community, what would that be? 00;23;20;25 - 00;23;57;06 Monica Engle Thomas Thomas: It really goes to the core of reclaiming the disabled narrative, because what the current disabled narrative is out there is that disabled people are either tragic or inspirational. We, in the stories that are told about us, we are only those two things. We serve as vehicles to move and able bodied persons story along and it's getting better. But that's the number one thing that I'm trying to change and that I want to change because anybody can become disabled at any time, were the most diverse, marginalized group out there. 00;23;57;08 - 00;24;08;22 Monica Engle Thomas If you live long enough, you will become disabled. So the idea that this entire group of people can only be those two things is ludicrous. And it has to change. 00;24;08;24 - 00;24;34;10 J.R. Jamison Jamison: Yeah, and you are well on your way on making that kind of change happen. And we see it also in literature, right? I mean, I'm a huge fan. I think people may know this about me by now that I'm a big fan of young adult literature and young adult is doing amazing, amazing work on putting folks who often were considered marginalized. 00;24;34;10 - 00;24;53;29 J.R. Jamison I don't love that word, but that's a word that folks often will use. Those who were often marginalized front and center to reclaim their own stories. And you are doing that work in so many ways. So monarchy. Engel, Thomas. Disability influencer, Charcot-Marie-Tooth warrior. Thank you so much for joining me. 00;24;54;02 - 00;24;57;12 Monica Engle Thomas Thomas: Thank you so much for having me. I really appreciate it. 00;24;57;14 - 00;25;19;10 J.R. Jamison Jamison: To learn more about Monica's work, find her on Instagram at Monica Engel Thomas. I want to revisit what I shared at the beginning of today's episode regarding people with disabilities a secondary characters. The world around us is changing, despite the despair we may feel from time to time. It's progressing more than it's regressing, even when some days it doesn't feel that way. 00;25;19;10 - 00;25;45;16 J.R. Jamison But we have to hold on to hope that the arc of the moral universe does bend toward justice. Just like Doctor Martin Luther King Jr shared over 50 years ago, people like Monica and Sandy and Antonio and Carter are putting themselves at the center of their stories and inspiring others to do the same. They are not secondary characters, but influencers and leaders who are taking on the world and always possible. 00;25;45;18 - 00;26;08;26 J.R. Jamison And the commonality among all people with a disability is the right to own their own story and to tell it however they choose. We're seeing this more and more in pop culture and literature, and let's just say I'm here for it. I recently finished The Pretty One by Kia Brown. It's a memoir that explores growing up as a twin when one is disabled and the other able bodied. 00;26;08;28 - 00;26;33;05 J.R. Jamison Kia has cerebral palsy and everyone in her inner circle always called Keita's twin the pretty one, Kia spent years in a vortex of self-hate until she took back her own narrative and spent more time focusing on loving herself. She started the hashtag disabled and cute to inspire others, and her memoir touches on the intersectionality of race and disability finding romance. 00;26;33;05 - 00;27;00;24 J.R. Jamison And it's done with a raw mix of humor and sorrow and ultimately, joy. I found it refreshing, and it's definitely on my top reads thus far in 2022. And if memoir isn't your thing, there have been a whole slew of books released in the past few years with disabled protagonists by disabled writers. For middle grade, I recommend wink by Rob Harrell, and for Young adult The Silence Between Us by Allison Gervaise. 00;27;00;26 - 00;27;24;21 J.R. Jamison Of course, there are way more books out there now covering disability enough that there is something for everyone. Book Wright has a great list of all over at their site, so I guess what I'm saying is, the best way to truly understand the lived experiences of others is to drop preconceived notions of what disability means and diversify your bookshelves, viewing and friendships. 00;27;24;21 - 00;27;34;13 J.R. Jamison And as always, just listen. 00;27;34;16 - 00;27;58;10 J.R. Jamison Stories from today's episode came from Muncie, Indiana and Des Moines, Iowa. We want to thank Hillcrest Services Behavioral Associates of Indiana and Principal Financial for organizing and contributing to facing projects in their communities. Sandy Penrod’s story was written in collaboration with Jennifer Stanley and was performed by Beth Nahre. Antonio Kioko’s story was written in collaboration with Deidra Lane and was performed by Carl Frost. 00;27;58;14 - 00;28;20;09 J.R. Jamison Carter Tharp’s story was written in collaboration with Jamie Reese and was performed by Charlie Isaacs. To listen to past episodes of this program, visit Indiana Public Radio Project. From there, you can subscribe to the podcast where you'll get the facing project delivered to your device each month. Or just ask your smart speaker to play the facing project on NPR. 00;28;20;11 - 00;28;47;03 J.R. Jamison Listeners can contribute stories or volunteer to share the stories of others that may appear on the show. More information at Facing Project. To continue the conversation about this episode, find us on Facebook, Instagram and Twitter at The Facing Project. The facing project is recorded at Indiana Public Radio at Ball State University and Beautiful and Wonderful, Muncie, Indiana, and is produced by the amazing producer and sound engineer extraordinaire, Sean Ashcraft. 00;28;47;05 - 00;28;58;26 J.R. Jamison The show is distributed nationally through PRX. We are your host, Kelsey Timmerman and J.R. Jamison. And until next time, we wish you the courage to share your own story in the empathy to listen to others.