Hannah Smith: Author/Advocate for Food Allergy Communities

Welcome to Disability Matters with your host Joyce Bender. All comments, views, and opinions expressed on the show are solely those of the host, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Hi everyone, welcome to the show. I hope all of you are having a great day. Throughout the Americas and around the world. I bring this up every time. I cannot believe how we have listeners in Hong Kong, Brazil, Russia, all over 17 countries with listeners. Message to all of you. You are helping me. You're helping me, 'cause you know, there's one point of this show. And that is quality of life for Americans living with disabilities. You all make a difference. Yoshiko Dart, special shout out to you. You know I love you, Yoshiko. And I got to tell you, I've been on the air 21 years. Can you believe it? 21 years. 21 years. And my sponsor is Highmark, and I thank them. But I must thank all of you. Thank you, thank you, thank you for helping me keep this show moving along, growing. It means so much to me, all of you. And hey, I have to have a special shout out to one of my most loyal listeners, and that would be Hannah's father. So Hannah's father, what's his first name, Hannah? Larry. Larry. Special shout out to Larry. And today I am so excited to have a wonderful young disability rights leader that is just the nicest person. She is so nice and really making a difference in the world of disability rights And that is Hannah Smith, who is also an author. She's an advocate for food allergy communities. And it's about time someone speaks up about this. And you know what? Hannah is the first person that has been on my show that has made this an issue, and it needs to be an issue. Hannah, welcome to the show.

Thank you, thank you, thank you, Joyce Bender. I'm pretty sure you just made my dad's entire week. So, thank you for that. He's never going to stop talking about it. I'm convinced. You just made my whole family's week. Thank you, thank you, thank you. I'm so honored to be the first person to be talking about food allergies and celiac disease. You know, it affects about 10% of the population, so I'm happy to to be here and to represent so many people. And yeah, it's such an honor. Thank you. Thank you.

Thank you.

Well, it needs to be talked about. And Hannah, people around the world that listen to my show and people in the United States, they often say, wow, that was great. Tell me more about the guest. So let's start with your story. Where did you grow up? Where did you go to school? Tell us about your family. Tell us about you.

Yeah, a little bit about me. So, I was born and raised in a small town on the edge of the Appalachian Mountains in Western Maryland. I live about 100 miles away from Washington, D.C. Cumberland is just this small town that was nicknamed the Queen City of Maryland because it was once this industrial powerhouse, but But today, it's like many small communities in rural America. My parents are both retired teachers who, they've always inspired me to make the most of my opportunities. In fact, my one grandfather, he began mining coal in West Virginia when he was just 6 years old. So education and reading and learning, it was always a priority for me. And to say it was emphasized and celebrated in my household, that would just be an understatement. After high school, I studied at a local community college. I was 18 years old. I didn't know what I wanted to do for the rest of my life, and there's a lot to learn. As much as I read when I was a kid, I still wanted to learn more. So I decided to start at a community college. Fell in love with the study of communication. Absolutely adored it. So whenever I graduated with my associate's degree, I transferred to the University of Maryland, College Park. Where I was able to earn a bachelor's degree in communication. While there, I was able to study abroad in Spain, and if you have any listeners in Spain, hola. And I was also able to intern for the Senate Small Business Committee. So, I'm happy to share with you also, Joyce Bender, in about 3 weeks, I will begin my master's degree at Johns Hopkins University.

Oh, congratulations. That is awesome. Very good. Great. Well, your life took a sudden turn at the age of 16. So let's hear what happened to you and how did you find out what the disability was finally? And, you know, what was it like? I call it having a mystery disability. So Let's hear about it.

That's right. That's right, Joyce Bender. When I was 16, I was diagnosed with celiac disease. But for 2 years, I battled this mystery illness. I had this sort of mystery disease. I had no idea what was going on. But if we back up and rewind a little and start in the beginning, so I was 14 years old. I started at a new high school. I didn't know anyone. I knew absolutely nobody. Of course, nobody really likes being the new kid at school, but I'm pretty extroverted and I was making friends quickly and my grades were pretty good. Life seemed great. However, just a few weeks into the school year, I started to feel like I had the flu. I had a headache that just didn't seem to go away. I started to feel extremely fatigued. And worst of all, I couldn't keep any food down. My parents thought that maybe I had anxiety because of the adjustment to a new school, or even that there was something in the food at school. It was so bad that I would even eat cereal in the morning, and I was a— I would walk from the kitchen to my mom's car. I would vomit in the garage or in our yard. I was absolutely miserable. So like any good parents, my mom and dad took me to the doctor and they said, "Something is wrong." The doctor looked at me and he said, "Well, you look really tired and you're losing weight." I could have told him that. I was sick for weeks, but I just wanted answers. And this went on month after month after month, 2 years. My symptoms got worse. I was constantly tired. I would fall asleep in school. I would go home and have to take a nap after school. I would bruise very easily. Um, I was worried more than anything about what was happening. I had no answers, but I had all the symptoms. I was worried, could it be cancer? You know, what is happening to my body? Um, so I had tons of blood work happening, and the test gave me no answers, but all of my vitamin levels were low and my thyroid levels were very abnormal. Doctors assumed that perhaps it's my thyroid. In fact, they were so sure that they even scheduled an operation to have my thyroid removed.

Oh no!

Before the operation, yeah, I was prepared for surgery and everything. I told my teachers, Joyce Bender, I was preparing for like staying home, but, um, but I was able to talk to my uncle about, you know, what was going on. And he said, "You should have your TTG blood work tested." Um, I'm not a doctor. I'm by no means a doctor, and I'm not going to try to pronounce what TTG stands for, but it measures the body's immune reaction to gluten. So, this was sort of the beginning of an answer for me and my family. I had the blood work done, um, and my results were 77, which anything below 3 is considered normal. My uncle knew to mention that blood work because my cousin has celiac disease, which is hereditary. So, finally, this is starting to feel like an answer. I'm relieved that I'm finally starting to have an answer, but at the same time, I'm scared for what the road ahead looks like. So, Joyce Bender, starting from this kid with a mystery illness to 2 years later finally figuring out just through a simple, rare little blood test, maybe I need to see gastroenterologist. I get to see the gastroenterologist, and I have an EGD, which is an endoscopy of the esophagus, the stomach, and the duodenum. And I find out that I have this thing called villous atrophy. So basically, the lining of my small intestines— there's nothing there. These little villi, uh, it's like hair-like, uh, finger-like things inside your small intestines that absorb nutrients. My body was attacking them, which explains why I wasn't able to absorb nutrients, why I was losing weight, why I felt so sick. And finally, the mystery illness had a name, Joyce. It finally has a name. So, I was a scared kid, but here I am now talking about it, and I'm so happy to share with your listeners more about it.

Now, a question that I have This celiac, did that cause that problem with your intestine or was that another thing? You know how you were saying you had no walls? Go ahead.

Yes, so, so, so, um, what happens is the villi, which is the lining of the small intestines, when I eat gluten, my body attacks the villi. So, the lining of the small intestines is what gets attacked, and so it's villous atrophy. So, your body literally loses its ability to absorb nutrients, and it's so harmful. You think about malnutrition and things like that, Joyce Bender. And so, long-term exposure to gluten, you know, if celiac is undiagnosed, if you're having symptoms and you're not diagnosed, or if you're just not following the diet like you should be, long-term exposure, it causes things like fertility issues and cancers. So it causes a lot of problems, but it all starts right there in the small intestines.

Yeah, you know what I'm wondering? If they had diagnosed this early, I wonder what would have happened, you know, with your problems that occurred. Do you know what I mean?

Oh, I I think about that way too much, Joyce Bender. I think about that all the time. You know, I live in a rural community. There's not a ton of access to a lot of things that people have in more suburban areas. So I wonder if because I live in such a small community, you know, there's not a lot of people who already have it. Celiac affects only about 1% of the population. So if I were to live somewhere where maybe it's more common, maybe doctors see it more often, then I would have been diagnosed sooner. I think about how different my life would have been for those 2 years.

Now, do you know how it is different when people are gluten-free, you know, they have the issue, but don't have celiac? Is that possible?

Yeah, I think a lot of people do the gluten-free diet for different reasons. Me because I have celiac. I've talked to some people with other autoimmune diseases where it helps them just with inflammation. I don't know the exact science behind it for other people. I know some people may try to do it as a fad diet for weight loss or different things. But it's certainly become more popular, which I'm not going to complain about because that means more access to foods in certain locations. And, you know, I'm going to see that GF symbol in certain restaurants on the menu. But yeah, a lot of people do it for different reasons.

Well, this is really something that does need to be talked about, and I'm glad we're having you on, Hannah. And with that, we're going to go to break. If you just joined us, we're talking to Hannah Smith, disability advocate for food allergy communities. And author. And a little later we'll be talking about her books, but right now we're gonna go to break. Don't go away.

Streaming live, the leader in internet talk radio, VoiceAmerica.com. At Highmark, we believe what makes us different makes us better. Our differences broaden our perspectives and foster diverse skills which complement each other. Creating a stronger and more vibrant workforce. It's this belief that earned us recognition by the USBLN and the American Association of People with Disabilities as a 2014 Disability Equality Index Best Place to Work. So we'll continue to celebrate diverse individuals because inclusion benefits us all. To find out more, visit highmark.com. Since 1985, Bender Consulting Services has served as a national leader in advancing employment of people with disabilities, including veterans with disabilities, with private sector companies and federal government agencies. Bender assists customers with achieving their diversity and workforce inclusion initiatives by tapping into a talent pool of individuals seeking professional positions, including those in the STEM fields. In addition, Bender services include disability employment consulting, training in technology accessibility through their HI-TESS line of service. For more information, please visit www.benderconsult.com. .com. Everyone has unique abilities, and with ABLE NOW, individuals with disabilities are able to save money while maintaining certain benefits such as Medicaid. ABLE NOW is a tax-advantaged savings program specifically designed for people with disabilities. Open an account online today and start saving for the things that are important to you. To learn if you or someone you know is eligible, visit ablenow.com. ABLE NOW is administered by Virginia529. Are you currently receiving SSDI or SSI and wanting to work? Did you know there is a free Social Security program called Ticket to Work to help you try work without risking your benefits? My Employment Options is an authorized SSA Employment Network specializing in work-at-home and local job placement in 47 states. Our clients receive a personal counselor to help find the best job fit and a staff-certified benefits counselor for help with Ticket to Work protections. Ready to try working? Apply for free job placement help at My Employment Options Follow Voice America at facebook.com/voiceamerica for juicy updates from your favorite radio shows and podcasts.

You're listening to Disability Matters. If you have a question or comment, call in toll-free at 1-866-472-5788. That's 1-866-472-5788. Now please welcome back the host of Disability Matters, Here's Joyce Bender.

Hi everyone, welcome back to the show. We're talking to Hannah Smith, author and advocate for food allergy communities. Hannah, as we're talking about this, who knows, there could be someone listening that, like you, didn't realize what was really going on. So how about if you explain to everyone what celiac is, because so many people are totally unaware.

Yeah, and if you're a listener and you're not aware of celiac, um, it was only about 10 years ago I was in your shoes. So, so there's a lot to learn, and I only have so much time. But celiac— celiac disease condensed is basically it's an autoimmune disease. It's not a food allergy. It gets interchangeably used as a food allergy. There's There's even been times, Joyce Bender, where I told people I have a gluten allergy because they're just not understanding that celiac is worse in a way because my body will literally attack itself and for months I will be feeling sick. And long-term exposure can cause things like cancer. I mean, it just opens this whole jar of worms. But celiac disease, so whenever I eat gluten, within minutes I'm going to be getting sick. I'm gonna be vomiting, I'm gonna be feeling dizzy, I'm gonna have a headache, I'm gonna look like a completely different person. And what's happening is when the, when the gluten goes into the duodenum, the first part of the small intestines, my body sees it and it's like, yep, you shouldn't be here, let's just cause chaos. Um, but it's, it's rare also, Joyce. So only about 1% of the population has it, which is why it's so underdiagnosed as well, because it's not common. Somebody might come to you, the doctor, and say Yeah, I've been, I've been having, you know, some issues. I keep vomiting, I have a headache. And that could be— Joyce, I'm not WebMD, but that could be a lot of problems. So I understand why celiac might not be the first thing to come to a doctor's mind, um, but for 2 years, um, I wish that I would have known about celiac disease.

Well, let me ask you this. We were talking a little bit about it earlier. But just for our listeners' knowledge, can you be gluten-free— need to be gluten-free, I should say— and not have celiac?

Yeah, there's, there's all kinds of problems of people that have. There's celiac disease, there's gluten sensitivity, there's gluten intolerance. I'm sure I'm missing a few. But, you know, a lot of people just have issues with gluten and they don't have celiac disease. Some people, like I mentioned earlier, may have an autoimmune disease or may have something like MS and choose to do the gluten-free diet and follow it, and it helps with their inflammation. I know some people who even have arthritis and choose the gluten-free route to help with inflammation. So going gluten-free, it can help all kinds of people. For me, it helps me because I have celiac disease. So, if anyone is gluten-free, they could or could not have celiac. They could just be doing it as a fad diet. They could be doing it for inflammation. Joyce, they could be doing it just because they like the way it sounds. Anybody can be gluten-free.

Okay. All right. Well, that's good to understand better. But you almost died because of a lack of an accommodation at the University of Maryland. Which is horrific. Share with our listeners what happened.

I did, and, uh, and I'll tell you, it was one of the scariest times in my life. Um, if you or anyone you know has a food allergy or celiac disease, then you know that when you trust someone to make your food, you are quite literally trusting them with your life. Um, so when I transferred to the University of Maryland My family and I, we met with the dining staff several times. We made the trip down, we would meet with people, discuss how I can be accommodated several times. And I was convinced that with UMD being a Big Ten school, and it was also the flagship school of Maryland, that they would be able to accommodate my needs. I'm looking at the campus, I'm thinking, "Yeah, there's tens of thousands of students who go here. Of course they'll be able to meet my needs." But I was wrong. On 4 separate times, I was fed gluten by dining staff. I repeatedly tried to check in with staff. I did everything right. I never ate food from their buffet-style options. Instead, I would request food items and meals with me every week. I would communicate with them every single week. I would talk to the chefs constantly on a daily basis. So Joyce Bender, you have to imagine this. I'm 3 hours away from home. I don't have a car. I have a small little mini fridge in my dorm room, and I don't have access to the typical kitchen items like an oven. But I have to rely on these people to make my food. So I was scared and I was cornered because I had no other options. So I kept having to go back. I kept having to give them another chance, and I was scared, but I had no other options. So on the 4th gluten exposure, I was vomiting so bad that I was actually in the middle of texting my parents that I was, as many people would call it, glutened. Uh, I was fed gluten. I had been basically contaminated with gluten. I was glutened. So as I'm in the middle of texting my parents, I pass out. I was in and out of consciousness. Oh no. Um, My roommate was actually so worried that she called 911 for me. And I barely remember, you know, most of this, but I do remember thinking that I just wanted to be safe. I just kept going over in my head, I just kept telling myself, "I have to get through this." So thankfully when I did wake up, I was in the hospital. I was still alive and my parents were there. They had made the drive to me. Somehow in record time, I'm pretty sure my mom was driving if they made it there that quickly, um, but my parents, they couldn't recognize me. Uh, I had busted blood vessels all over my body. I had broken ribs from vomiting so uncontrollably, and I just kept thinking, how is this going to impact my studies? How is this going to impact my school? So I had to actually take leave from my studies for 1 week, which that may not sound like a lot of time, but in a 15-week semester, that can make all the difference. So after that, I went home. I stayed for a week. I tried to heal. I tried to get a little bit better and try to get better, uh, just focusing on, you know, what, what options do I have. So after that, I didn't trust the dining hall to prepare any unpeeled food for me. I managed to make do with the few weeks left in the semester with field yogurts, packets and cans of tuna to try to make tuna salad, and hard-cooked eggs that I would peel myself.

Wow. I mean, that's terrible. Oh my goodness. I can't believe what that did to you. Oh, thank— your parents, I'm sure they were devastated. So what happened after that? What did you do?

I decided to file a lawsuit. I love UMD. I am proud that I graduated from UMD, and because I love the school, I decided to make it accessible to everyone. So, I filed a lawsuit, and Joyce Bender, it was a scary process. I was nervous. I knew that it would go public, and it would go public quickly. Um, yeah, but I, I knew deep down in my heart that things have to be better, that nobody else can go through what I went through, that this can only happen to one person, and I'm only going to do everything I can to make sure that only happens to me. Because there's so many people with food restrictions, there's so many people with celiac disease and food allergies. So I went through with a lawsuit. I found a wonderful attorney named Mary Vargas. And ironically, her— she has a son with celiac disease, so she was able to really empathize with my situation. The lawsuit went forward, Joyce, and it ended up settling and being a landmark case because it, uh, it was the largest settlement for a celiac case like that. UMD had to hire an independent person to come in and evaluate their standards and practices, and then basically help them improve and help them, guide them to never let that happen again. And during that case, Joyce Bender, um, you know, I went from being very scared in the beginning. Nobody, nobody likes to, you know, have any kind of involvement in a lawsuit. But during the case, thousands, and I, I truly mean thousands of people reached out to me and my attorney talking about how they had similar things happen to them at their college. And that made it all worthwhile.

Well, look what you did though. You made a change. You stood up. You were an advocate. And a lot of people don't have that courage, but you did. And you know what? You may have saved lives. You realize that? I hope so. I bet you didn't think about that, but you may have saved Lives. And with that, we're going to get ready to go to our news break on the half hour. And today we have Gerald Helmy. Gerald, how are you?

Oh, I am wonderful, Joyce Bender, and excited to be here on the call.

Thanks for letting me call in.

Of course. Well, we have a real disability advocate here, Gerald, with Hannah. Right up your alley because I know how you are about disability rights. So what news do you have for us today, Gerald?

Well, with Perry Jude being out this week, I'm actually reporting on the activities of our wonderful news anchor Perry Jude Bradesik, who at this past weekend was at the Bender family picnic here in Pittsburgh with our Rev Up Pennsylvania voting station where you can, as a person with a disability, come register to vote. That's right, we're setting up tables where people can— with disabilities can come register to vote. Perry Jude was there all set up making sure we got a few people registered at the event, and many people were registered. We also were set up that you could change your address so that you were set up to vote in Pennsylvania as a person with a disability because for REV UP Pennsylvania, our state coalition is part of AAPD's national effort to get out the vote for people with disabilities. This is one of the things we're doing this right now, and pretty soon we'll have another station set up at Disability Pride Pennsylvania here in Pittsburgh., for that event, which Joyce will be speaking at, I know. We'll have a voter registration table set up there as well. And, uh, boy, is it an important time to make sure you're registered, because every voice deserves to be heard, every vote deserves to be counted. So as a person with a disability, make sure you go to benderleadership.org and go to the Rev Up page to learn out more about how your voice matters and how you can make sure as a person with a disability your voice gets counted in every election.

Oh yeah, we know, we've heard those words of Justin Dart, "Vote as if your life depends upon it because it does." I want to remind everyone, if you lived in a country with a dictator, whether it's Russia or China or any other country. If you say something you shouldn't, you're going to be imprisoned or possibly killed. You do not have the freedom that we have to protest. I remember when President Obama said, "Yes, you may call me the worst word, but you know what? I don't mind because that's what democracy and freedom—" is all about. So you can't do that. You have a gift. The gift is your ability to vote. Make sure you're registered because I always tell people, don't complain after because I'm going to say, did you vote? Anyone you know that hasn't registered, make sure you talk to them. And Gerald, thank you so much for calling in.

Happy to do it.

Lead on, Joyce.

Lead on is right. Thank you, Gerald. So, Hannah, I have to ask you a question. You know, you had this landmark case that was settled. Judy Heumann, my good friend who we lost, it was devastating to me. What impact did she have on you?

Judy Heumann, oh my goodness. Joyce, I, first of all, I have to say I wish I could use the rest of our time to speak about how much I admire Judy. You know, her fight, it has always inspired me. And I take every day and I hope that I contribute to her legacy and I honor her work. You know, Joyce, I told you before that my dad was diagnosed with MS when I was just 6 years old. So in the 5th grade, I actually had to do a school project on somebody famous that I admire. I had so many options, right? A lot of people were doing like celebrities, like singers or actresses, but nerdy 10-year-old Hannah was stuck between Amelia Earhart and Judy Heumann. So Joyce Bender, I think that says a lot about my admiration for her, but I think the biggest lesson that she left us with is that when no one fights for us, we have to fight alone until others fight with us. And that's what I wanted when I decided to file that lawsuit against the University of Maryland. I wanted to make people like Judy Heumann proud. I wanted to continue the fight, because where one generation's fight ends, my generation has to pick it up, because— If we don't fight for the future and we don't fight for today, what hope is there?

Yeah, she was a giant. Judy, you know, when I traveled around the world with the U.S. State Department as a speaker on the employment of people with disabilities, I'm not kidding you, it could be Indonesia, Japan, didn't matter where it was. Someone would say to me, I mean, one of the people that lived in the country that was— had a disability, they would say, do you know Judy? I mean, Judy was known everywhere. I love Judy. I had her so many times on my radio show. And by the way, folks, you can go back to Spotify or go to Voice America, voiceamerica.com. .com and you can listen to any of the old shows. Ann Judy is on there several times. When she wrote the book Being Human, H-E-U-M-A-N-N, I was one of the people that told everyone about buying that book. And I'm not surprised she had that impact on you. But you know what? That says something about you, Hannah. That says a lot about you, that you would be impacted by a world-renowned disability rights leader, and she would be proud of you. She would be so proud of you. Thank you. For what you did and how you stood up and made a difference. And I know you wanted to make a a difference for young people because of your writing, which I love. So would you share more about your writing as an author?

I sure would. Oh my goodness. I got to wipe away the tears first. To hear you say that I would make Judy Heumann proud, that made my whole year, Joyce. Thank you. Thank you. Thank you. So ironically, her book came out, I think it was in, you know, February, March of 2020. So I read it right during the beginning of the pandemic. And so I'm thinking like, "Wow, this book is amazing." Hearing more about her story, and I had known some of the things, but there was a lot of things I didn't know in it. So I kind of— that clash between reading that book and the start of the pandemic, being down with the rest of the world, I wanted to challenge myself. I figured if I'm going to be locked inside and I'm going to have to stay inside and focus on stuff, I don't want to be sad. I don't want to keep watching the news. I want to, I want to make a challenge. I want to try to do something. So I set out to write a children's book. Joyce Bender, my mom, is a retired pre-K teacher, so there was always hundreds of children's books in the house. I grew up with them. I still go back to reading Shel Silverstein if I'm having a rough day. So, I came up with the idea. I actually had a dream about it at 4 in the morning, about 4 in the morning. I woke up and I scribbled down, "The Celiac Who Had Celiac." So, that was my project for about 8 months, Joyce, and I worked on it. It's a rhyming book. It talks about what celiac disease is. About how to live safely with celiac disease. And writing it wasn't enough, so I did the illustrations as well. I learned how to do the illustrations, which if you were to give me a pen and paper, I would not be able to do an illustration. But thank goodness to— thank God really for technology. I was able to do the illustrations and write it, and I just— I simply published it online through Amazon's Kindle Direct Publishing programming. I didn't really expect anything about it. I thought, eh, I did all this work, I might as well publish it. But Joyce Bender, that simple distraction from the pandemic, it has truly grown into my proudest accomplishment. It has touched so many lives. It's been sold in so many countries. And just recently, I got a message from a mother who reached out to me about her 4-year-old daughter. And how her daughter was having a hard time understanding celiac. Her daughter had just been diagnosed with celiac and didn't understand what was happening with her body, and she didn't know how to explain to her daughter, like, this is a lifelong thing, this is a chronic condition. But the book was the moment where it finally clicked for her. So hearing about that or getting videos from a Girl Scout in California, um, those are truly the moments where Everything paid off. And ironically, Joyce Bender, um, I have a Little Free Library in front of my house, and about 2 years ago there was a family that moved in across the street from Pittsburgh. Um, I saw they had 2 young girls, so I figured, oh, might as well put a copy of my book in just in case, right? Just in case they want to read my book. Um, later that night I saw the youngest daughter run over and she grabbed the book and she ran home, which I'm thinking, that's interesting. Why, why would she grab the book and then like run home as fast as possible? Um, but Joyce, the next day the mom came over and told me that both of her daughters have celiac disease, and her youngest daughter, who was 7 years old at the time, fell asleep with my book in her bed because she kept reading it over and over and over. Wow.

Yeah. Oh man. Wow, what a story. I mean, that must have really got to you.

Can you imagine my surprise? Oh my goodness, it— I was crying. I was crying like a baby. I'm not even ashamed to say it. But it gets wilder than that, actually, because last year the newspaper, my local newspaper, did a small story, had a picture of me and my little neighbor just talking about, you know, how crazy is it that these two people with a rare disease, you know, these kids basically move in across the street from this woman who writes a book about celiac disease. And a few days later, after that story is published in the newspaper, I hear my doorbell ring. So I'm thinking, okay, like, that's kind of different. Nobody really knocks on our door anymore. So I open the door and there's an older woman and she's sweating and she's panting and I'm I'm asking her, like, are you okay? Like, was there an accident? What's going on? And she's like, you're the author. You're, you're, you're the lady that wrote the book about celiac. And sure enough, this woman named Sue Dudley, um, who lives about a mile down the road from me, she read that article and she walked around our entire neighborhood looking for the house with the Little Free Library. And she wanted to talk to me because her grandson had the same symptoms. And Joyce Bender. Since then, her grandson has actually been diagnosed with celiac disease.

Oh my goodness, look at the impact you're having! That is so awesome, Hannah. Hey, what are the names of your books for the listeners?

The first book, The Celiac Who Had Celiac, that's, that's the book I would recommend everybody start with. It's just a a tale about a yak who is trying to teach people, the other yaks in his world, about what gluten is, how to live with gluten, and it has recipes in it. It has a coloring page in the back. And then the second book is called Quack Quack Celiac, and that's another book if you like ducks but you don't like yaks, or if you just want another story for your kids, that's a great book as well. It also has recipes and a coloring page. And the third book is actually a celiac Christmas, and that combines the characters from Quack Quack Celiac and The Celiac Who Had Celiac. So, you know, all three of these books, Joyce, I want people to know what the ingredients you're supposed to avoid are, because gluten is not just labeled as gluten, right? It's going to be brewer's yeast. It's going to be barley. It's going to be rye, sometimes it's going to be oats, and it's going to be wheat and malt. So if you, if you, you know, just pick up a food item and you start reading the ingredients, you're not going to see the word gluten, but you're going to see one of those 6 ingredients. So those books all mention the ingredients you're supposed to look for, and they're going to mention topics like cross-contamination, so you can avoid the small crumbs of gluten. So like if I go to someone's house and I were to use their toaster, that would make me sick because there's these small little crumbs of gluten in their toaster. So all of the books are teaching kids about what celiac is, what foods to avoid, and it's telling them how they can live a safe and healthy life while being gluten-free. And how did they, uh, purchase these books? Available on Amazon.

Okay, so go on Amazon, Hannah Smith, and you will be able to buy those books. Now, I'm going to tell you, think what she's done. So if I were you, I'd support her and buy those books. And you, you never know who you're going to give that to, and it would help them. And especially though, if you have any questions about yourself, yourself, your children, or any of your relatives, this is the book for you. And I have them, and they're all very good, except I'm not sure I have that second one, Hannah. You'll have to get me that. I know I have the Christmas. I love that Christmas one. But go to the store, go to Amazon store, which used to be go to the bookstore. Now You can still go, still should support the bookstore, but go to Amazon and get these books by Hannah Smith. And if you have any questions, you can get back in touch with me. So Hannah, what is the Western Maryland Literacy Initiative and why did you create it?

Yeah, the Western Maryland Literacy Initiative DAD is a nonprofit that's a literary nonprofit I started about 2 years ago actually. And it's just an organization where I want to promote reading and I want to promote literacy access. Living in such a small town in such a rural area, not everybody has the means for transportation to the library. And not everybody has the means for food. So Joyce Bender, in my free time, I build Little Free Libraries I have one in front of my house, which, you know, the story I just mentioned, you know, it's already left a deeper impact on me than I think it has on the rest of the world. But the Western Maryland Literacy Initiative, we use different programs and resources like the Book Thing in Baltimore, Maryland, and the Library of Congress Surplus Book Program. And we get books to people. We donate books to schools. To churches, to synagogues, different places to worship, to hospitals. In fact, Joyce Bender, there's a school only about 4 miles from my house where in the springtime we were able to donate so many books that every student was able to take 4 books home with them this summer to keep. We're just trying to promote literacy access, and the Little Free Libraries have a pantry on the bottom, so if somebody doesn't have the means to buy food, They can go there, get a book, and hopefully a meal as well.

The name of her book— Karen Slaughter, I wanted to get back to what you were saying. Karen Slaughter had a book out, has books out. She's a multi-million publisher, millions of books published around the world. If you've seen that TV show Will Trent, Karen created that character. He's a profiler and has dyslexia. So that is, uh, why she created the character. She wanted to show people a good person that finds bad guys can have a disability. So why I am mentioning her, Hannah, she will love what you're doing because her big thing is libraries. And if anyone goes JoyceBenderLeadership.org. You can take the Slaughter Stigma Pledge because we're trying to end the stigma, especially with high school kids with disabilities that are bullied. But she will love that, what you're doing. I think that's awesome what you're doing, Hannah. I really do. I think that's absolutely awesome. Okay. Now, as you were talking, when I read about you, you interviewed all these dignitaries and celebrities, which I couldn't believe how you met all these people. But what was your favorite? Who were your favorite notables?

Oh, my goodness. Try to condense them down. I would have to say one of my favorites was meeting Emma Watson at the Women's March in 2020. I was able to have a press pass and interview different celebrities. But growing up reading Harry Potter and watching the movies, you know, being able to see someone— and people always tell you, you know, don't meet your hero, don't meet your favorite celebrity, things like that. He was truly like one of the nicest people I've met, and it was It was so awesome to interview her and to share, you know, her comments back with people in my hometown for my local newspaper. So, to meet somebody and actually have them as nice as you imagine, you know, I definitely— I'll admit I sort of fangirled a little. But she was very nice. There were several people that day who were very nice and provided wonderful comments for my small-town newspaper. It was great to kind of, you know, provide that information and bring it back home. Janelle Monáe was another really great person. Katy Perry was another really nice person that day. Honestly, Joyce, I could say that they were all pretty nice, but Emma Watson has to be probably my favorite from that day.

Okay. So how did you meet all these people?

I had a press pass. To the Women's March in 2020. For a little bit there, I thought maybe I wanted to be a journalist. I kind of, kind of changed paths, but that short moment of maybe being into journalism and getting to interview people and getting to ask the important questions, that was incredibly fun, being in that position to ask questions and to provide thoughts. And to provoke thought as well. I also try to take advantage of every opportunity. So, I was able to interview Jerry Greenfield of Ben Jerry's. I can't remember what ice cream flavor he said my personality was, but just being able to ask people who have influence questions and being able to provide those answers to other people, I found that incredibly impactful and truly life-changing.

Well, once again, wow, you have initiative, Hannah. You're a great role model for other young people living with disabilities. You really are. So, thank you. What did you do with the Universidad in Spain?

That's right. So, I— my final semester of my undergrad, I studied abroad in Spain during the winter session. I was able to go over there. I was able to live in Seville, which if anybody is looking for a wonderful place to visit in Europe, I would 100% recommend Seville. Everybody was incredibly nice. It was wonderful to learn about the history and the culture. But I think for me that, that study abroad experience had a little bit of a different impact than some of the other students because it was only one year prior that I was living in a dorm and relying on the dining staff. So you fast forward to my final semester and I'm in another country and I'm learning about how not just things like Christopher Columbus and their history, but I'm learning about how other countries exist with food allergies. So I was able to go and I was able to ask for gluten-free food. I was able to go through markets and compare the prices there to the— compared to the prices here. So yeah, that was incredibly impactful and it was the experience of a lifetime.

I cannot believe how easy it was for you to find gluten-free food in Spain.

That is amazing to me. Oh my goodness, Joyce, it was such a difference, and the prices there were so much less expensive than they were here. So when I flew back home, I had quite a few boxes of gluten-free pasta and food in my suitcase. I think the TSA were a little worried. But, but I was able to bring it back and show my family and show some of my friends and compare the prices. It was truly, um, it was very wild to see.

Well, uh, here we are today. We've had this show talking about celiac and the impact it can have, which can be deadly. So here's my question: why do you think this is not talked about more as a disability?

Yeah, um, there's a couple different ways I could answer this, but I think first and foremost, um, you know, being gluten-free isn't— as I— we mentioned earlier, it's not always synonymous with being someone who has celiac disease or, um, you know, just simply has gluten sensitivity or gluten intolerance. So, you know, it's a rare disease. Only 1% of the population has it. Not everybody that's gluten-free has celiac disease. But I think also being gluten-free is sometimes a punchline or can come across as if someone's a picky eater. So, I think if people demand an accommodation based on gluten-free, whether it be a food allergy or celiac or some other type of medical need, Otherwise, it would look like an illness. It would look like an invisible illness. Excuse me. So, you know, people with— Joyce, you understand with epilepsy, invisible illnesses, I think, are conveyed in a way where not everyone understands our needs, and it's kind of hard to sometimes convey our needs. But I assure you, if you were to look at me, you wouldn't realize that I have a disability, but give me gluten and give me a couple minutes, and you'd be very aware that I do, in fact, have a disability.

Disability. How true, how true that is. How true. You know, when you said that about people saying, oh, you're just a picky eater, that reminds me of women having a migraine and people saying, oh, you're just complaining because you have a headache. You know what I mean? We just— oh, I do. I— we need more knowledge in this area. Well, Hannah, I want to thank you for being on the show today and ask you, what message do you want to leave for our listeners?

Oh boy. Um, well, it's impossible to summarize celiac disease and food restrictions, but if I can leave your listeners with just one piece of information, um, it would be the people with celiac and/or food allergy. We don't just deserve a seat at the table, we deserve to eat the food that's on the table as well. To truly have an inclusive and equitable space, sometimes it's just as easy as asking if anyone has a food allergy, and then ask how they can be accommodated. These questions are so simple, but they can literally save lives. The questions matter, but listening to how to accommodate matters even more. So— How true that is.

And Hannah, thank you so much. Thank you so much for being with us. And you know what? I'm going to have you call in in December, Hannah, so we can talk about your book when people are buying books over the holidays. I just really love you, Hannah. Thank you. You keep on keeping on. We end every show with a quote, and today it is, "You gain strength, courage, and confidence "By every experience in which you really stop to look fear in the face, you're able to say to yourself, 'I lived through this horror. I can take the next thing that comes along,'" said Eleanor Roosevelt. This is Joyce Bender, America's Voice, where disability matters at voiceamerica.com. And in the words of Mary Brooker, when you go out today, remember, choose joy.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific time and 2 PM Eastern time for another installment of Disability Matters right here on the Voice America Voice America Variety Channel. We are the leader in live internet talk radio. VoiceAmerica.com.