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.

Hey everyone, hi, welcome to the show. This is Joyce Bender with Disability Matters. On voiceamerica.com. Thank you, thank you, thank you, thank you. Your support for this show, unwavering, unwavering, and that means so much to me. And to everyone around the world in over 130 countries with listeners, uh, remember what I always tell you: one person can make a difference. And I want to say In Europe, you are doing great things with all those new regulations, people with disabilities getting hired, all that accessibility you're doing. Kudos to you. I think it's awesome what you are doing. Richard Roberts, my friend in Brazil. Hello, Richard. Love you. Can't wait to see you. And all of my friends, Kazakhstan, Indonesia, South Korea, Japan. Panama, from Kazakhstan on. Thank you so much. I loved meeting all of you. And yes, here it comes. Wait for it. Special shout out to Yoshiko Dart. Hello, Yoshiko. Love you, Yoshiko. Lead on. Lead on. And my sponsor, is Highmark, such a great company. I want to tell you something. Tomorrow, 12 to 1:30, I am speaking at the Thornberg Lecture Series, and it is virtual. And I will be sending it out again today to everyone. And guess who's speaking with me? Karen Hanlon, the Chief Operating Officer from Highmark. And, you know, Highmark is larger than the Starbucks. Do you know that? I mean, Highmark is much bigger than people realize because when they bought Allegheny General Hospital, with that they purchased all of the 13 other hospitals and all of the urgent care centers. And then they have different lines of business from Engine, to, uh, work with, uh, Concordia, you know. I mean, they do so much, but one of the things they do is sponsor this radio show, and that means certainly so much to me. So thank you so much. Hi, Mark. Remember, tomorrow, Thornburg Lecture Series, and you know how we missed Dick Thornburg. I'm honored. I'm the only person that was asked to go back twice. And you know why that is? Jenny Thornburg is still so committed. She's still living and she's still so committed to employment of people with disabilities. So I'm right here in Pittsburgh, Pennsylvania. If you're here, I may see you tomorrow, but if not, I'll see you virtually. And with that, I'm so excited about our guest today. She is a dynamo. She is a great young woman. You know, she impressed me from when she was on the show. And you know, if you would ask me one way to describe her, I would say kind. Kindness. She is so kind and an advocate. Perry Jude, my news anchor, is with us. And Perry, you'll see what I mean in a minute about what she went through and what she did about it. And so, Hannah, Love having you and say hi to Dad, who is my fan at your house. Words. Uh, so Hannah, Hannah Smith, uh, who is an author and disability rights advocate. I thought we could start by you telling a little bit about yourself, like where did you grow up, go to high school, where'd you go on to college, um, you know, a little bit about your family.

Yeah, thank you for having me back, Joyce Bender. It's always an honor. I was so excited when you invited me back. Um, so a little bit about me. I grew up in a small town in western Maryland, uh, right on the edge of the Appalachian Mountains. Um, very small town. If you want to take it into consideration, there's only 3 high schools in my county. So it's very small, and I think everyone tends to know everyone, which can be a good thing and a bad thing at times. Um, so I went to a small high school, small public high school, Allegheny High School, which at the time was the oldest high school in the state. So lots of character. Um, and I, I knew I wanted to get out of a small town, but I, I didn't want to rush into things. I started my college at small community college, Allegheny College. And once I figured out, at least I think what I figured out is I wanted to do for the rest of my life was study communication. I started college wanting to be a doctor and I left with a communication degree. So I transferred to the University of Maryland at College Park. There I absolutely fell in love with everything about academics. You know, I think there's just something about going to a big school that really draws you in where you have these big lectures and everyone gets to share ideas and sometimes they clash, but you get to discuss it and, you know, break down the ideas. And while there, that's where I ingested gluten. So that's where my big, you know, clash with advocacy started to come down. That's where I started to think, okay, this is a chance to be an advocate. This is my chance. And yeah, so at UMD, transferred in, I'm about 3 miles or 3 hours, excuse me, 3 hours away from my parents. It's my first time being on my own. And, um, you know, Joyce Bender, it was scary, but it was exciting at the same time. And so I'm relying on dining halls to feed me, and, uh, I don't have, you know, a refrigerator. I don't have an oven or anything in my dorm room. It's just me and my roommate, and we're trying to make the best of it. So I'm relying on them to, to feed me, and that's when I was fed gluten. So that kind of started the journey for me to be an advocate and realize, okay, this is this is something I'm gonna have to do for the rest of my life, and it's not just on my shoulders, but it's on everyone's shoulders.

Um, oh, that is so great.

You—

what year are you in at college?

So I've, I've graduated from University of Maryland in 2019, and right now I'm getting my master's at Johns Hopkins University.

Oh, okay, so you're on your master's. Yeah, that makes sense. Well, congratulations.

Thank you.

Uh, on that, what is the master's in? Communications?

It is. It's, uh, it's in, uh, communication. I'm getting a concentration in political communication and health communication.

Oh, that's good. That's very good. Very good. So in addition to being an author, what are you doing right now? In addition to going to college, are you on an internship?

I am. I'm also interning for the Peace Corps right now, uh, specifically for the behavioral health and outreach unit. So Some of the things I've been focusing on is creating resources and newsletters for peer support networks for, you know, the thousands of Peace Corps volunteers that are all around the world. And, you know, in my master's right now, my focus, my research is on book bans. So beyond just working 40 hours a week for the Peace Corps, I'm also very interested in researching book bans. And, you know, it goes beyond book access and literary representation. I think all too often people who are in communities that experience book bans, I think that there's a couple of different things that are communicated to students. I think, you know, local communities that are going to these board of ed meetings and supporting book bans and, you know, creating these arguments for why, why they need to happen and why they're important, I think it communicates to students from traditionally marginalized communities and minority groups that, you know, we don't want your narratives told and you don't matter. So I'm focusing on the then what. What happens when the book is banned? You know, what happens when—

And you know, this didn't just start. This is not some new thing that just happened. Velshi, who is on MSNBC, has that special every week called Book Banned, and he'll bring on the author. He's been doing that. I'd say for a couple of years. So this has been going on for a while and not a good thing. You have a great book right behind you. I see it.

I have a couple. That's one of my favorite books right there.

Yes. Yeah.

Inhuman. Yeah.

That is— that is a great book. It is. But— and your great books. I've read that. I know that. Thank you. Quack, quack book. Yes, I do. But anyway, okay. So Let's hear about celiac. Let's start. What is celiac and how many people in the US have this disability, would you say?

Uh, roughly it's about 1 in, uh, 100 people have celiac disease, but some people argue that that number is lower than what it should be because it's very difficult to diagnose. Um, for example, for me, it took about 2 years to diagnose what was happening. So I was 14 years old, I had started at a new school, and, um, I started vomiting every morning. I would eat cereal, and on my way walking to the garage, I would start vomiting in the yard. So my parents kind of thought maybe it's anxiety, you know, are you making friends, are you doing well in classes? And everything was going fine except for every time I would eat, I would vomit. Um, so, you know, it took 2 years for me to get diagnosed. All of my blood work had been very wacky. I my TSH levels, my thyroid levels, were, you know, either very high or very low. Um, but I was experiencing symptoms that are kind of similar to having the flu. Um, lots of stomachaches. I would bruise easily. I was losing weight. I couldn't keep food down. I was having a really hard time focusing. And, um, you know, I had really bad migraines. So, you know, getting a blood work test called TTG— Joyce, I'm not a medical expert, so I'm not gonna— I'm not gonna say what it represents. Um, but I was able to see that any, any number lower than 3 is normal, and mine was 77. So wow. Yeah, I was, I was pretty, uh, pretty shocked, but I was happy to finally have it.

Is that a test specifically for celiac?

It can be. It's, it's not used, uh, it's not recommended to diagnose celiac. So once your doctor can confirm that your numbers are high, what they'll then do is recommend you to a GI specialist who can do an EGD. So That's an esophagogastroduodenoscopy, and that looks at your esophagus, your stomach, and your duodenum, which is the first part of the small intestines where celiac really exists, because that's where you have this thing called villi, which are these little hair-like follicles that line the small intestine, and that's where your body absorbs nutrients. So when you have active celiac like I did when I was 14, 15, and 16 years old, those, you know, 2 years of my high school I had villous atrophy, so my body was attacking it because celiac is an autoimmune disease. So my body was attacking the villi, and so I wasn't absorbing nutrients, which explains why I had iron deficiency and was bruising easily, and I wasn't able to keep food down. I was losing weight.

And, and that's what— when you say your body was— your body was reacting with, what the heck is this? Right?

Is that what you mean?

With gluten. And so, you know, I started going through, and once I was diagnosed, I started going through all the cabinets, and it sneaks its way into a lot of ingredients like soy sauce or Twizzlers licorice. It's in a lot of things that I think some people would find surprising.

And you know what, Perry, the sad part about this is, and you'll be seeing when we talk more, is that people don't think of this as a disability. In other words, when you go into a restaurant, it is not an automatic accommodation for you that you can say, you know, I live with celiac, and they say, oh, thank you for telling me, no problem. And, you know, and they take it seriously. Do you know what I mean, Perry?

Oh, absolutely, Hannah. I'm was diagnosed with celiac disease 20 years ago. I had my EGD first and then my blood work, so it's a little different than yours, and my symptoms are different than yours, but it's horrible. I mean, I, I just, I can't, uh, I'm lucky that I'm home alone and I have a clean kitchen, right? There's no cross-contamination, and so I felt so much better. But yeah, the only way you can really The only cure is to not eat, not eat gluten.

And there's so many symptoms. So, you know, for some people it can be years before they get diagnosed.

Well, my sister is one of those people, and we'll talk about Joy a little more when we come back. But right now we're going to go to break. If you just joined us, you're going to meet this dynamic young woman Hannah Smith with my right arm, Perry Jude Radesik. And with that, don't go away, we'll be right back.

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Hey everyone, welcome back to the show, and we are talking to Hannah Smith, an author and disability rights advocate. And guess what else? Very young. So she is a future disability rights leader. As she gets older. And boy, we need them, don't we, Perry? Don't we need young people?

Absolutely. Hannah, stick around. Don't go anywhere.

We need you, Hannah. So, Hannah, let's talk about how serious not understanding celiac is, because I think people are going to— listening to the show are going to be shocked at what happened to you. So let's hear your story.

Yeah, I think if I want anyone, any of your listeners to take anything away from our conversation today, it's that, you know, celiac disease, it's not a food allergy. And I think a lot of people think, oh, it's a choice, or, you know, you're just doing that for fun, or you're just trying to be healthy. So it can have a lot of misconceptions for a lot of people. But like I said, when I was at the University of Maryland, I was fed gluten on 4 separate times. So the 4th time was kind of the final straw. And you have to remember, I'm in a dorm room and I'm, you know, hours away from, over 100 miles away from my parents, my family, and I'm relying on strangers to make my food and to make it safely and to follow the law.

Excuse me. So when you were at school though, did you tell them? Did you explain it to them thoroughly?

Absolutely. Yeah. Um, my dad and I had gone down before I transferred. Um, we looked at the school, we had toured the school, we had talked with dining staff on numerous occasions. Um, you know, we— I was repeatedly assured, you know, we've had students with celiac before, we have students with gluten sensitivity or gluten intolerance or a gluten allergy, so you'll be fine, you know, you'll be safe. And unfortunately in practice, that was not the truth. That's not what happened. You know, I would go in, I would go in for meals and, you know, it would sneak its way into things like a hash brown. So just by simply not reading the ingredients on the box, you know, that just caused me to get incredibly sick. So sick, Joyce, that one time I was vomiting so bad that I was in and out of consciousness. I had vomited so bad that I had broken ribs. And my roommate called my parents and said, she's really sick, I'm gonna have to call 911. Um, so my parents, you know, made it to the hospital in record time, and I was in and out of it in an ambulance going to this hospital thinking, what's happening? Like, and I know in the back of my mind I'm thinking they had to have fed me gluten again. And that, that's what happened. I had a staff member at the dining hall actually text me a picture and said, there's actually in big letters, wheat on the box, and I don't know how somebody could have missed this.

Um, so what was that that you ate?

What, what food? It was hash browns. I had asked for— I would send in, I would email an Excel sheet of my meal preferences and where I would be and what time I would be. So I had it, you know, very easily laid out for dining staff. I said, you know, I have class here, but I'm going to be in the— at this dining hall on campus at this time. Here's a meal that I think I would like. Can you just make it safely? I wasn't asking for anything crazy. I wasn't asking for crab legs or steak. I was just asking for simple meals, you know, hash brown, hash browns with eggs and I think like bacon or something like that for breakfast. And ended up, you know, I had to miss a week of classes, which in a 15-week semester can be, you know, a huge difference between passing and failing. But My teachers were very— I was out for a week. I was out for a week. So I was so sick, and, um, you know, I, I just felt awful. And I think more than anything, the mental toll of just knowing that I'm going to miss classes and just knowing that it happened again, and the fear of, you know, what am I going to do, you know, what options do I have. So for the remainder of the semester, um, for the remainder of the school year, I, I went back to my dorm and and I would have only prepackaged food from the dining hall. So I would have, you know, cans of tuna or hard-cooked eggs that I would peel myself, you know, things like yogurt that I would peel myself. So it was, you know, the trust had been broken and it made me terrified to trust them and to rely on them, but I had no other choices. So I would walk or take an Uber to a market off campus if I had to as well.

So what did you do about this?

I, I filed a lawsuit, um, once I graduated. I had thought about it for a long time, and, um, you know, I don't think anyone likes to, likes to throw around the word lawsuit or be involved in a lawsuit, whether you're the, the plaintiff or the defendant, um, but it occurred to me that this was something that had to be done because if, if it's happening to me, it can happen to other people. And, you know, if 10% of the population has celiac or a food allergy, that's a lot of people that are going to be affected. And, you know, even though I don't have an anaphylactic reaction, there's people who do have anaphylactic reactions, and that can be life or death. So I decided that I had to file a lawsuit, not really for myself because I was no longer a student and it wouldn't affect me, but because of all the people that it would come after me and who it would affect after me.

And did you win this lawsuit?

Uh, we, we settled. It was a landmark settlement, so I think it's creating precedent for a lot of other people. And I think it really opened eyes for a lot of people who are considering that school. And I think for a lot of parents who are sending their kids away to a school, that this is something we need to take seriously, because if it can happen to her, it can happen to our kids as well.

Now let me ask you, when you won that lawsuit, did that cause them to make appropriate changes.

Absolutely, Joyce Bender. They've since built a new dining hall on campus and they've had to completely bring in independent parties to train their staff and audit the training of the staff. So everyone has a new curriculum on how they teach their staff on, you know, cross-contamination. So things like cross-contamination, so that's a word that I think a lot of people with food allergies or celiac disease will throw around. And so For example, when I was diagnosed with celiac, we had to get rid of our toaster. My family had to get rid of our toaster because little pieces of, you know, gluten of bread that had gluten that was in there could make me sick. So it's the smallest bit that you're looking for. And I don't think everyone can see that. You know, it's one thing if you're just working there and it's just a normal behavior to use the same tongs for a gluten pancake as a gluten-free pancake. But training that staff and redoing the training, I think that's really helped a lot of people because I haven't seen any lawsuits come out of, UMD since. So, um, I'm just proud of, you know, being able to help so many people who've come after me.

Ah, that is awesome, because you know what, how powerful to know you not only helped all those people but that you may have saved a life. That is powerful. What do you think, Perry?

Absolutely. That was really the thing that had to be done. And you did that, Hannah, uh, and, and, uh, you, you made the change. Sometimes that, as much as you try, and you tried, you had the documentation, you tried, uh, to live clean there with your food, and, and, um, and it didn't happen. And as it was horrible experience that you had to go through, and sometimes that's the only way school districts or schools or Universities will change is when they're forced to.

You know, why do you think it is, Hannah, that so few people seem to know about this?

I think there's a couple different things. I think number one, because it affects such a small amount of the population, you know, 1% of people have celiac disease. But I do find myself more and more meeting people and, you know, they'll say that they have celiac and I'm like, oh, no way, me too. But I think also, I think just being gluten-free in general. Some people think it's just a choice or a fad, and so they just kind of believe, oh, you're just doing it for fun, or they don't understand that gluten does sneak its way into ingredients. Like I said, soy sauce and, you know, Twizzlers licorice. I'm sorry to call out Twizzlers by name, but it is in there. You put it in there, you should be proud of it. Um, You know, I think there's a lot of misconceptions when it comes to it. You know, the fact that it took me 2 years in a rural community to be diagnosed with it just because my doctors were not very familiar with what celiac was. And, you know, my cousin has celiac, so my uncle had heard about me being sick and said, oh, have they tested her for celiac? So it was actually me going to the doctor's office and saying, I want that blood work, give me the blood work. Um, and so, you know, it wasn't the doctor's idea to even test me for celiac because it's so rare.

If people only get the endoscopy, is there a chance that they won't know what's wrong if they don't have that blood work?

So some people will start the gluten-free diet before they even get blood work or the endoscopy. And so that can cause a false negative. You could have other health issues that aren't diagnosed. On top of celiac, or you could have other things in your body being affected by having celiac. So there's a lot of different components there to getting the blood work and getting the scoping done. My doctors have always recommended I get blood work and scoping just to confirm the diagnosis, though.

Oh, that's great. That's a good idea. Yeah, that's a good idea to have that backup on what what you're doing. And again, for anyone listening, we're talking about having celiac, living with celiac, and the impact that can have. And as I said, I know through my sister how hard this is. You know, it's like when you go to restaurants, as if they don't understand. And Perry, I'm sure you run into this all the time. Um, but that's why we need people like Perry and Hannah. And Hannah, what you're doing is— we'll talk about what else you've been doing that is so phenomenal. But you know what it's time for? It is time for our news on the half hour with our own Perry Jude Radesik. Hey Perry, what do you have for us today?

Hey Joyce, we started to talk about this last time I was on your show. About the potential cuts to Medicaid and how appropriate your show is airing on a Tuesday, live on Tuesday, because today's a national call-in day to protect Medicaid. Just is. It's the national day for advocates to reach out to our members of Congress and tell them no cuts to Medicaid. Why are we doing this? Because Congress is considering drastic cuts to Medicaid. This is a program that helps 17 million adults with disabilities who depend on Medicaid for health, mental health care, and long-term care services. Now, what's happening today, it's the start of a two-step process, so it gets a little confusing. Some people may not, like, understand, well, what does budget reconciliation have to do with a Medicaid cut, and what do I think about Speaker Johnson saying, well, our bill doesn't say anything about Medicaid cuts, so what does that mean? Well, so the budget reconciliation, uh, process, it expedites passage of certain budgetary legislation. So this case, this package is a set of numbers. So that's what it is, a set of numbers. So it doesn't say Medicaid, it says a number. and that number is a spending level that committees have to abide by for the next 10 years. So, uh, and why are they doing this? Because President Trump has a goal to cut $2 trillion from the federal budget. $2 trillion. So the current House proposal is to cut $880 billion from a segment of the budget that includes Medicaid spending. Remember I said it's a two-step process. So first comes the budget reconciliation where it's gonna mandate a, a spending level, $880 billion less than where it is now. And then it goes to an Energy and Commerce Committee later on to then determine how they're gonna implement those spending cuts. Two-step process. So what does Energy and Commerce have to do with Medicaid? Well, Energy and Commerce oversees telecommunication, consumer protection, goods and drug safety, public health, energy and commerce. So it's a bit— they cover a broad area. And so a lot of people are gonna be coming in saying, don't cut us, don't cut us, don't cut us. And that's what we have to do too. $880 billion is a lot to cut. And so many people are, are speculating that you're not gonna get to $880 billion without touching Medicaid. So you see the two-step process. First comes that top line number that the House and Senate have to vote on, the president signs to get to $2 trillion in spending reductions. Then comes the part where those committees then have to decide how they're gonna do it. So, uh, what kind of proposals are being talked about to get to $880 billion less out of Energy and Commerce? They're talking about cutting the Affordable Care Act, which reduces, uh, the income levels that a lot of people, uh, that that allow a lot of people with reduced income to buy into health insurance. The second thing they're talking about is shifting to block grants or per capita caps for Medicaid. So how does this lower spending for all of our states? Well, it does it by saying, Pennsylvania, you're going to get this much money in Medicaid and you're not getting any more. You're going to have to divvy it up between health, mental healthcare, long-term services, and when you hit that number, we're not giving you anymore. That's not how Medicaid operates now, Joyce Bender. It's just not how it works. So that's another place that could get cut, or they could say work requirements, which is— would condition having a job, looking for a job, caregiving, or going to school on whether you get Medicaid or not. So no matter the name, they're all cuts to Medicaid and it should be opposed. Now, some people would say, well, there's, you know, so much fraud and abuse, we could cut fraud and abuse. Well, we have fraud and abuse programs to guard against that in Health and Human Services. Even in the state of Pennsylvania, the Attorney General is always Prosecuting people for Medicaid fraud because why? They find it, they catch it, they deal with it. So to say we're gonna do more fraud, uh, at waste and abuse outta Medicaid, I don't know where they're gonna find it because it's already happening. People are already looking for it. They're already being prosecuted. So Joyce, as we always say on your show, advocacy matters. Time is of the essence. You have to do it today. The House is supposed to be voting on this first step of this two-step process today. So we need to stand up, protect the health and mental health care and long-term care services of our communities, make sure Medicaid remains robust and vital for anyone who depends on it. Every call, every email counts. We can't let this safety net be dismantled. You can go to ndrn.org. That's our national office, the National Disability Rights Network, ndrn.org. They'll have a link, you can click on it, you fill out with your name and address, and you send it to your congressman or congresswoman and tell them no cuts to Medicaid. It's that easy, ndrn.org, Joyce, and you'll be able to do that today, and you'll help save Medicaid for 80 million people across this country.

Wow, so important. This is serious, folks. I give you an example. I have an employment with a very significant disability, cerebral palsy, difficulty speaking, extreme mobility issues, but he has a great job. I hired him. I got him a job. And of course, Medicaid for long-term care. You cannot afford a personal attendant without Medicaid. Now, Perry, does Medicare ever get involved with that for people? Or just Medicaid?

It depends, right? How's that for a legal answer? It depends. Uh, certainly I'm 65, I'm on Medicare, right? If I was low income, I might be on Medicaid and Medicare. I could be on both, or I could be a younger person than the age that I'm at to qualify for Medicare, a younger person who's on Social Security already because of a disability and, uh, be on Medicare and Medicaid because of income. So it is possible that people can be on both Medicaid and Medicare if they're low income and, and are on Social Security.

Well, my point is, if you don't have that, you don't work if you have a very significant disability. So, Perry, what do you think is the possibility of what happened the last time when the disability rights community went, went into Congress halls, they had to take them out of their wheelchairs, it caused a huge thing. Do you think that would have an impact or do you think no because it's, you know, one party? What do you think about that?

Oh, I think it would have an impact, Joyce. The, the phone calls over the last two weeks are having an impact. Because there have been, uh, letters from Republican members in swing districts going to Speaker Johnson saying, "I'll vote for this bill, but you can't cut Medicaid. You just can't do it." So the speaker is calling in these Republicans from swing districts, trying to cut a deal with them so he gets the votes to pass a true $2 trillion spending reduction. He's trying to figure this out and navigate the pressure that our community is putting on members of Congress and people who stand up for people who are low-income, putting the pressure on Congress when it comes to saving Medicaid. The pressure is working. We'll see. Remember, Speaker Johnson can go around and say, "There's nothing in this bill that says Medicaid." No.. But there's a top-line number that when you get to energy and commerce, there's, there's no path forward without touching Medicaid.

Well, there are also people that will be running for office in 2 years.

That's right.

In these states. That's right. So, um, okay everyone, you heard what Perry said. Again, Perry, can they go to your site and They can go to disabilityrightspa.org.

It's much faster if you just go to ndrn.org, and then on their main page, there'll be an action alert about what I just talked about today. Click on that, fill out that form. That's the quickest and easy way to get a note to your members of Congress.

Okay, ndrn.org. Thank you so much. Uh, well, Hannah, as you can see, there are a lot of things in motion. That's, as I said, that's why we need young disability rights leaders like you that have passion. And as I said at the beginning, you're also an author. Let's hear about your books and what caused you to write them.

Yeah, so, uh, back in 2020 when the pandemic really started My dad has MS and I was with my parents and to keep him safe and to keep my family safe, I really did, I really engaged in the lockdown aspect of the lockdown. You know, not going really outdoors and not going around a lot of people. I challenged myself and said, well, if I'm gonna be inside all this time, I should learn something. So I taught myself how to illustrate and I embarked on the journey of writing a children's book. My mom is a retired pre-K teacher, so there's always kids' books around. So it was easy to get, inspiration and some guidance from her on, that's not what kids would like, or yeah, kids would like this. And to my dad's credit, he was great with looking at the pictures and saying, yeah, that looks good or that looks bad. So, you know, 2020, in December of 2020, I published my first book, The Celiac Who Had Celiac. It's a, it's a book that I really, I thought about for a long time in the back of my mind. And so having the opportunity to write it I just wanted to challenge myself and just kind of have an influence on the world and leave my mark. But Joyce, I tell you, the book has had a bigger impact on me than I think I ever thought it would have. Um, you know, I have neighbors that live across the street from me, and I've since learned, you know, just so many people reaching out to me, Joyce. Um, so many parents reaching out to me on Instagram or online and saying, you know, my child is only, you know, a couple years old, 4 years old, or whatever it is, and, you know, they didn't understand what was happening until they read your book. So seeing it used as an instrument and a tool to help young kids understand what's happening with their body, um, you know, I had a hard enough time figuring out what was happening at 16. I can't imagine being, you know, 4 or 5 years old and not knowing what's happening and just constantly feeling sick. Um, I have a little free library in my front yard, and a couple years ago I saw— I had new neighbors move in, so I put a couple copies of my books in there, and I saw the youngest, who I think was about 7 at the time, grab one of the books and run home and The very next day, their mom came over and said that both of their daughters have celiac disease. So it's these little moments like that where I never know who I'm going to meet and I never know how I'm going to make friends, but I've gotten to meet so many people all around the world. And, you know, just helping kids has been truly the honor of a lifetime.

Oh, that's wonderful. But that's not the only book you have. It's certainly not. Let's hear about the other books you have.

Yeah, so once I found out that the celiac started to be kind of successful and having an impact, I said, well, I want to try to challenge myself even more. And I ended up publishing 4 books in 1 year. So I then wrote Quack Quack Celiac. And all of these books have, you know, a recipe or a coloring page in the back for kids to really be engaged and, you know, really kind of think, well, I'm like that duck. I'm like Quack Quack Celiac. Or I'm like that celiac. So, you know, it's targeted more towards younger kids. I say younger, probably 4 or younger. And, you know, it's been so inspiring just seeing these books go out into the world. And I've also written A Celiac Christmas, which was very fun to make because it's essentially a cookbook with all kinds of cookie recipes for kids to— or people in general. If you're older and you like cookies, go for it. You know, for kids to make different recipes and try it out for whenever Santa visits at Christmas time. So those are the 3 books that focus on celiac. I've also written a book called Bev the Bird, which really teaches kids about different perspectives because Bev stands for bird's eye view and the bird flies all around the place and says, I'm the biggest of them all. And then whenever the bird lands and gets to look at everything from the ground at a different perspective, it says, actually, I'm pretty small.

Wow, that is great. Okay, so how do we buy these books?

They're on Barnes Noble and Amazon. Um, they're also in small bookstores in the DMV. So if you know where Rise Bakery is in DC, they're also signed copies there. But a lot of people buy them on Amazon. They've been sold all over the world. I've gotten messages from people as far as England saying, my kid didn't know what's happening. But reading the book, really, that was the moment it clicked. And that's, that's just, it's been amazing. I had no idea that it could go that far. And here I am all these years later being on your show and getting to share it with even more people.

So Hannah, would you say, uh, it's Hannah Smith. Can they go to your name to find out the names of these books in case they're forgetting everything we're saying?

Yeah, I mean, Hannah Smith, I think, is a pretty generic common name. But if you type in Hannah Smith celiac, just on Google, I'm sure that you can find it. And even if you type in Hannah Smith celiac on Amazon, you should be able to find it there as well.

There you go, everyone. Hannah Smith celiac. I would suggest you really, you know, like, if your child is having any issues, buy this book. You know why? It's like epilepsy. You know, I live with epilepsy, and there are children's books that were written about epilepsy. And the thing is, with epilepsy, there's incredible stigma. And then when you meet someone else, you say, oh, wait a minute, you know, I'm not by myself. And sometimes a child that young, you know, they're ashamed, they're embarrassed, as you are at all ages. So You know, please take a look at that. Really, really is important. So I have another question for you, Hannah. As I've been saying throughout the show, now I know Perry also has celiac, but when you go to a restaurant, what advice do you have for anyone listening to the show right now? When they're nervous about ordering something, what is your suggestion?

I try to live by the rule of trust your gut to protect your gut. So if you go somewhere and you listen to certain phrases and you try to hear out for, you know, if they're saying words like cross-contamination, I'm going to wait for them to say those phrases and I'm going to wait for them to say that they're going to change their gloves. But I also have to prompt them, right? I have to say, you know, I have celiac disease. You know, if I'm ordering gluten-free food, it's not a preference. You know, it's not a fad. This is, you know, a medical condition. This is essentially my prescription. So I'm trusting you to make my food. I'm trusting you to make sure that I'm going to leave here not being sick. And I always ask people, you know, I always give them an out. I say, is this something that you can do? I just want you to be honest with me. And I've had times where some people say, well, you know, sometimes they don't always change gloves in the back. And so immediately to me, that's a red flag, right? There's no pink flags when it comes to celiac disease and eating safely. It's either it's a green flag flag or it's a red flag. So if I hear anything like that where, you know, sometimes they're not washing their hands or they're not wearing— they're not changing their gloves, then I'm out of there. And another part is you really have to do research. There's apps like Find Me Gluten Free that I rely on so much that really you can go in and it's a community of people who are gluten-free where they can rate restaurants and you can, you know, research it and look at how they have things and call call ahead of time as well if you have doubts. So just call the restaurant and say, can I speak to the manager? And, you know, say, I just want you to be honest with me, is your stuff actually gluten-free? And, you know, what kind of process do you have?

What would one of those apps be? Where would they go?

Yeah, you can just go, um, I have an iPhone, so I just went on the App Store and just looked up Find Me Gluten Free. It's a red app with white writing, and You just make an account and you can put in your zip code. So for example, I've gone to California before and Joyce, I'm a Type A person, so I had an Excel sheet of all of my days planned and what restaurants were safe around there. I was anxious about it, so no one else around me had to be anxious about it.

But you know what?

That is smart. I didn't get sick. Smart thinking. It was great to plan ahead and, you know, really have options in the moment. So planning ahead and trusting your gut. I was, I was telling Perry earlier that I've had a waitress before say, oh, you just need to do a juice cleanse. And so I was like, I don't think I'm going to trust you to, to make my food. That was a bright red flag for me. Um, but you know, there are really good times as well where I've had, you know, waiters say, oh, I, I also have celiac, or I have a brother who has celiac. Um, so you know that they really get it and they are going to understand that it's not a fad and it's not just a dietary choice. You know, I'm not a picky eater, but my body is, and I have to rely on people to respect that.

And you know what, I'm going to give also my opinion from being with my sister. I'm going to give you some advice to our listeners. When you say— well, in her case, it's gluten-free, dairy-free, but I'm just going to focus for— but she does have celiac, so let's focus on that part, you know, the gluten-free. When she says, well, you know, I can only eat gluten-free, I have celiac, and they say to you, all right, let me check, I'm pretty sure. If they say I'm pretty sure, they're not. It's sort of like Ginny Lay-Flurry, who's the chief accessibility officer for Microsoft. She would always say to me, If you ask someone if their website is accessible and they say, "I'm pretty sure," they're not. You can count on it. And it's the same thing here.

How about when people say to you though, "We can make anything on that menu gluten-free." Yeah, I'll ask them, you know, "What sort of things do you do to make it gluten-free? You know, how many times have you done it before? Are you doing it just because I'm here?" I mean, Joyce Bender, I've had times where I wear the hairnet and I go back with the manager and watch how they're doing things. I know that that kind of sounds crazy, and I saw your eyes get big there for a moment, but it's true. I mean, you have to think of it, you know, gluten for me is like poison. So you have to imagine if someone's cooking with Windex around their food, I want to make sure that there's no poison near my food, just as you would with any other, any other thing that would make you sick. You know, in the long-term health effects of this, you know, you're more susceptible to types of cancer, you're more susceptible to have fertility issues. So, you know, simple little changes and just asking the extra questions, they're absolutely worth it. It's an investment in your health just to go that extra mile.

And I would once again say I agree with everything Hannah has said in her advice to you. You know, why don't you ask some of those questions about cross-contamination, about wearing gloves? And I would always say, hey, look, If you don't, I understand. See what ended up happening? Sometimes the people, they only eat salad, uh, you know, something like that. But you still have to be sure, no matter what it is, about that cross-contamination. Well, Hannah, you are a little fireball, so obviously you have been influenced by people in your life. So I wanted to ask you Who is your role model?

Oh, geez, Joyce Bender, you know, there's so many people that I would consider a role model. I mean, I would consider you a role model. I would consider Judy Heumann a role model. I mean, I have a picture here of Elijah Cummings, and that was one of the last times I saw him before he passed. And, you know, he said something to me that echoes— Elijah Cummings, Representative Elijah Cummings.

Oh, yeah, he was so awesome.

And, you know, one of the last times I spoke with him, he said, "If you wanna see greatness in the world, then you have to start being great." And so I think that, you know, every day we have an opportunity to do something good and to help people. And so Joyce Bender, people like Judy Heumann, who really took a stand and made things more accessible for people like me and people like my dad who has MS, it's these little fights that we pick up every single day that help just not just us, but the next generation. So in my work with being in the Peace Corps right now, it's an internship. But, you know, I'm the first generation in my family to not serve in the military. And I had thought about joining the military. And you're not able to with celiac or any food allergy. So you're not able to be an astronaut at NASA. You're not able to, you know, be in the Peace Corps or join the NOAA Corps or Public Health Service. So, you know, to other federal employees out there that are working right now. I think it's an opportunity for people with disabilities to influence and honor the tradition of passing on the fight to the next generation and inspiring the next generation that we still can serve our country and we can be part of the mechanisms that makes our country go round. So people like Judy Heumann, people like you have inspired me to keep up the fight and to keep it going. And I'm grateful to be part of that fight.

We're grateful to have you. What do you think about that, Perry?

Ah, I think, uh, Hannah, uh, things you've said are, are truly, uh, motivating, uh, for any person young or old who's listening, uh, especially the Elijah Cummings quote that, that you gave. And appreciate all that you've done already and all that I know you're going to do.

I appreciate that, Perry.

Yeah, me too. I agree. Well, hey, Hannah, thank you for being with us. And listen, everyone, if you think, oh my goodness, I wish this person had heard the show, you can. It is on demand on Spotify, Apple, almost every social media has this show. And what I would suggest you do is you get that podcast, share it with someone. Uh, just as Hannah, you need to put that on your website or what, uh, and Instagram. We already advertised you out everywhere, but as she said, you never know, you could end up saving a life. So with that, thank you again, Hannah. It's always great to be with you, Perry. And with And with that, we end every show with a quote. And quote today is, "When you get a chance to take the podium, take it and speak up," said the Honorable Tony Coelho. This is Joyce Bender, America's Voice, where disability matters at voiceamerica.com. Can't wait to talk to you all next week. And in the words of Mary Brooker, when you go out today, remember, when you make a choice, choose joy.

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