Kristine Napper, author of A Kids Book About Disabilities, talks about identifying disabilities as normal and working to make spaces welcoming to all.
Kristine Napper, author of A Kids Book About Disabilities, talks about identifying disabilities as normal and working to make spaces welcoming to all.
A Kids Book About Disabilities (view book)
Full Book Description:
Sometimes people act like having a disability means you’re from another planet, even though over a BILLION people in the world have disabilities. So how do you talk about disability? How do you talk to people with disabilities? This book helps kids and grownups approach disability as a normal part of the human experience.
About the Author:
Kristine Napper teaches middle school just outside Portland, Oregon. She’s a lifelong wheelchair user and social justice seeker. She finds joy in good books, long conversations, bright colors, and tacos.
*If you want to be on a future episode of A Kids Book About: The Podcast or if you have a question you’d like us to consider, have a grownup email us at listen@akidspodcastabout.com and we’ll send you the details.
A Kids Book About: The Podcast
S1 E07, Kristine Talks About Disabilities
[INTRODUCTION]
Matthew: What are disabilities?
Anderson: A disability is something that someone is not able to do that someone else is able to do and something that makes their life harder.
Ariadne: Disability is when someone can’t do something. For example, when someone breaks a leg they can’t walk very well.
Kristine: The way I described disability in my book is when your body can't do something the way that most people's bodies can, so you find a different way to do it. It means that you don't do things the way everyone else does it, or the way most people do it, so you find a different way.
Matthew: Welcome to A Kids Book About, The Podcast! I’m Matthew, your host. The voices you heard at the top of our show were from Anderson, Ariadne, and Kristine.
Each week we talk about the big things going on in your world with a different author from our A Kids Book About series.
[MEET OUR GUEST]
Kristine: Hi, I'm Kristine Napper. I am a middle school teacher. I'm also a wheelchair user; I have a beautiful purple wheelchair. And I am the author of A Kids Book About Disabilities.
Matthew: Fun fact! Kristine’s wheelchair has a name!
Kristine: She does! Her name is Lydia.
Yes, I name everything because I'm a weirdo. I've had this particular chair for maybe three years, not super long. But I had to name her.
Matthew: I’m talking to Kristine today about disabilities. You may know someone in your life with a disability. I have people in my life that have disabilities. Disabilities are not always physical. And they’re not always visible.
Kristine: There's lots of different kinds of disabilities. I mean, some of them are more physical like, obviously, mine. I use a wheelchair. I can't walk. And people can't see or can't hear, or things that are more obvious, but also a disability can affect the way that you learn.
It could affect the way your memory works. It could affect the way that you pay attention to things. It can affect your emotions. A disability can affect your health or your mind or your body in lots of different ways.
Matthew: I want you to think about that for a minute. “A disability can affect your health or your mind or your body in lots of different ways.” There are people in your world, kids and grownups alike, who think in different ways than you. Or who move in different ways than you. Or who breathe or talk or read or grow or feel in different ways than you. And often, how they do these things is out of their control, much like how you do these things is out of your control. It’s just how you were born, how you were made.
Let’s do a quick check-in, because I know you might be having lots of different thoughts right now. How does thinking about disabilities make you feel?
Anderson: It makes me feel sad because someone has one and some people have them in the world and scared that I might get one.
Ariadne: It depends when I’m playing a game with my sister where we’re making paper casts. It makes me feel differently then when I’m just thinking about it in general. Thinking about disability makes me a little worried and scared sometimes.
Kristine: Having a disability makes me feel everything, like you name it. Some days it makes me feel sad or angry or frustrated. If I can't go somewhere or if it's so much harder for me to do something that should be easy, or if somebody is not treating me the way I want to be treated, you know, those things are just things in the world that are unfair. Anytime something feels unfair, it makes me sad or angry or frustrated.
But also I have a niece and nephews who love to ride on the back of my wheelchair. And it's so much fun to take them for rides on my wheelchair. And I'm not going to lie. I think it's fun, when it's like an icy day, to slide around on the ice and I'm not gonna fall over like people walking will, it's just fun. So sometimes it's fun!
And having a disability has helped me to be a more creative person. I have to solve problems and, you know, creative ways and do things that are different from the way people around me are doing them. So it's made me a good problem solver. It's made me creative.
It's made me more sensitive. You know, I notice other people's needs and am able to understand when they're having a hard day. So it's made me a better person, I feel, like in a lot of ways.
So along with being sometimes sad and mad and frustrated, it also makes me feel grateful and happy and proud.
Matthew: You write in your book, “The first thing to know about people with disabilities is… we are NORMAL. Normal people come in all different shapes, sizes, and colors. Having a disability is one of the many ways to be normal. So if my disability is normal, how do you think I like to be treated?” So, what are ways that you help your students see other differences as normal?
Kristine: So in my classroom, of course, the kids see me every day as their teacher in a wheelchair, which on day one I'm sure seems unusual and surprising to them. But by day two they're already over it. It's no longer new and interesting. And I think that's probably really good because you just get used to seeing people who are different, but doing normal things. It makes different seem very normal.
I like to say to my students a lot, “I, as your teacher, I will try very, very hard to treat all of you fairly, but I will not treat you all the same.” And that surprises them at first because fair seems like, well, you have to treat us the same. But no. Because we're all different, we have different needs. We need different things to help us learn. So well, of course, I'm not going to treat you like you're the same. You're not the same.
For some kids it really helps them to have something in their hands they can play with. A little stuffed animal or a ball or something they can just play with with their hands. And for some kids that helps them focus their attention better. They can listen better. They can learn better when their hands are busy.
And for other kids that's so distracting for them. If they have something in their hands, they can't listen. They can't focus. They can't learn.
So I'll let any kid try it for a while. But if after we've tried it for a while, we discover that no, that doesn't work so well for you, but it does work for you. Well, now these two kids have two different rules. One gets to use it and one doesn't. And one has to find something different that's going to help them.
We have to find what works for us. And one way isn't better than the other. It doesn't mean that you're a good student or a bad student if your way of learning is different, it just means that you're figuring out what works for you.
Matthew: We’ll be back in a minute with Kristine - and the answer to a question submitted by a listener - right after this quick break.
[BREAK]
Matthew: Welcome back to A Kids Book About: The Podcast. On today’s episode we’re talking about disabilities with Kristine Napper.
You heard from Kristine at the start of the episode that she uses a wheelchair. Can you remember the color of the wheelchair? What about the wheelchair’s name?
Go ahead! Call it out!
If you said “a purple wheelchair named Lydia”, excellent memory! Let’s spend a few minutes learning why Kristine relies on a wheelchair in order to get from place to place.
Kristine: I was a baby when I was diagnosed. When I was born, they couldn't tell anything was different at first. I was a happy, healthy baby and they started noticing once it was time that most babies would be starting to crawl and I never learned to crawl.
At first it was, “she's developing a little slower, she'll crawl when she's ready,” but I never did. So they started to take me to the doctors and doing different tests. And I was about one year old when they were able to do the right tests and get me diagnosed with SMA. I have a tiny little scar on my leg from when they did that test.
Matthew: SMA stands for Spinal Muscular Atrophy. Do you recognize any of the words in that name? Spinal? Muscular? Atrophy?
Kristine: So, “spinal.” Your spine is your backbone. And the way all of our bodies work is our brain sends messages through our spine and then is sent out to our muscles, telling us how to move.
But some of the messages in my body get lost along the way, something called neurons that carry those messages down the backbone to your muscles, some of them don't work. So the message never gets from my brain to some of those muscles.
So what happens is those muscles get weaker. They get smaller. And that's what we call “atrophy”. The muscles just... cause they aren't being used ever. So what that looks like it's basically all-over muscle weakness. It's most obvious in my legs. Always has been. I've never been able to walk. I have used a wheelchair for as long as I can remember. I can wiggle my legs around a little bit. I can feel them. I can feel my whole body, but I can't even just pick up my foot by myself.
My arms also... I have more strength in my arms and I do in my legs, but my arms are much weaker than those peoples would be. My hands are weaker. Um, I can't lift my arm very high up. I can write with a pen just fine, but a lot of times I need help getting the lid off of the pen. I can pick up a cup and drink out of it if I have to, but it's very heavy for me. It's really hard to do. So I usually drink out of a straw because that's easier.
SMA also affects my lungs, my breathing. My very deepest breath I only get in about a third of the air that most people would get in their lungs. If I get sick, I can't get a really big cough cause I don't have that much air in my lungs. It can make things like that a lot harder. I don't notice the breathing thing most of the time, but if I get sick, it becomes an issue.
My spine, also, isn't very straight. And I had surgery when I was eight years old, which straightened my spine out at the time, but it continues to grow after eight. So it continued to curve a little bit. So my balance is really bad because my back isn't straight. My wheelchair is designed very specially to fit me so that I'm able to sit safely and, you know, as comfortably as possible in my wheelchair. But if I try to sit somewhere else, I'm very uncomfortable. If I don't have support, I'll fall over.
So those are some of the most obvious ways that it affects me.
Matthew: I have never met Kristine in real life. We live on opposite sides of the country. You, most likely, have also never met her. But as you’ve been listening, your brain has probably been trying to paint a picture of what Kristine looks like. I think that description she just shared does a beautiful job, don’t you think?
[LISTENER QUESTION]
We received a number of questions for Kristine. Today we’re hearing from Ariadne in Massachusetts.
Ariadne: My question is what are some examples of why people get their disabilities?
Kristine: Thank you, Ariadne. That's such a good question because there are different ways that people can get their disabilities. For me, I was born with my disability. It’s genetic. So just like you get your hair color or your eye color or how tall or short you are genetically through your parents, that's how I got my disability.
Other people can get their disability through an accident. Sometimes like a car accident or some way that they got hurt. Sometimes by getting sick.
So yeah, disabilities can come lots of different ways.
Matthew: Listeners, I want you to think about ways you can help welcome into your space, your home, your classroom, not just people with disabilities, but anyone different from you.
Share your ideas with whomever you may be listening with right now. It’s okay to pause the episode.
Kristine: I mean, the hardest are the times when I can't go to a space at all, because it's not accessible. If there's no ramps or no elevators... if I'm just not welcome to the space, that's the hardest.
It makes me sad when somebody will plan a party or an event or something at a place that has stairs. And then tell me, well, I wish you could come. And I just don't even want to hear it because if you really wished I would come, you would plan it somewhere else. Like you would adjust the plan so I could come.
And it's usually not because people mean to be unwelcoming, but they might not be used to somebody in a wheelchair or somebody with a disability.
So a lot of times it's very awkward at first. People might be uncomfortable. They might be nervous. They're not sure how to talk to me. They're not sure how to help me or if I need help. And it then becomes my job to try and make other people feel comfortable, try to help them get over that. And then it doesn't usually stay uncomfortable.
I'm good at helping other people to become comfortable and get to know me better until the disability doesn't even seem like a thing anymore. But it takes a while to get there.
Matthew: Whose job is it to make someone feel comfortable or welcomed in a space? Yep. I knew you already knew the answer to that question!
Kristine: I feel like it was actually a lot easier in many ways when I was a kid, especially since I was a kid after ADA came along.
Matthew: ADA is the Americans with Disabilities Act of 1990. It’s a civil rights law. Civil rights are rights and freedoms that belong to all people. It was passed to prohibit discrimination based on disability. That means that businesses, organizations, towns, and cities could not exclude or discriminate against someone just because they have a disability. It’s the law that put into place lots of accessibility features such as ramped sidewalks, crosswalk signals, automatic doors, ramps, and many, many other things that help all people access all public spaces and services.
Kristine: ADA became a law when I was five. So I was pretty young. Kids are just very good at being welcoming and being inclusive. Being creative.
That gets harder as you get older. Grownups aren't as good at including everybody. They aren't as good at changing the rules.
The one place that I have felt very welcome as an adult... something you might not know about me is that I love to sing. I'm not a great singer, but I love singing in choirs. It's really fun. Um, and I hadn't done it since I was in school and I missed it. So a few years ago, I started looking for a community choir, something here in the Portland area that I could join and get singing back in my life. So I called around with two different places that I found on the internet and it looked like it'd be interesting.
Um, I sent an email actually to a place that sounded like they might be a good fit for me. And the first place I emailed actually wrote back and said, sorry, we have lots of stairs that won't work. And I was just the end of that. But the second place I emailed the director of the organization, it's called PDX Vox, it’s the choir, the director emailed me back really quickly with probably the nicest email I've ever gotten from anybody in my life. It was so detailed. I expected it to just say yes, it's accessible or no, it's not. But she gave me lots of details about all of the different places they go for practices and for performances. She told me about each of the buildings and where there are buttons on the doors and where the parking situations like where the bathrooms are, like, where the elevators are.
Like she just gave me so much information so that I can make the best decision for myself. And it just let me know right away. This is a person who cares about the people in her organization. Like she wants. Everyone to feel included and welcome. And I knew as soon as I got that email, I need to be part of this.
Matthew: Before Kristine returns to her classroom and her students, she has one more thing she wanted to make sure you all heard. Ready?
Kristine: Kids already know that things should be fair and that everybody should get to be welcome. It's okay to change the rules to make sure everybody's welcome, so don't forget that when you grow up.
And just keep looking at the world around you and thinking about how does the world meet people's needs? Whose needs aren't being met? How could we change the world a little bit to meet somebody's needs differently?
Like those are questions you can ask yourself anywhere you go.
[CLOSING]
Matthew: Thank you to Kristine Napper, author of A Kids Book About Disabilities, for joining us today. And thanks to our very special kid voices for helping make this episode what it is.
Anderson: My name is Anderson. I am 8 years old. I live in Georgia. And my favorite thing to do right now is play Roblox.
Ariadne: My name is Ariadne. I am 7 years old and I live in Massachusetts.
Matthew: Thanks, Anderson! Thank you, Ariadne! If you want to be on a future episode of A Kids Book About: The Podcast or if you have a question you’d like us to consider, have a grownup email us at listen@akidspodcastabout.com and we’ll send you the details.
A Kids Book About: the Podcast is written, edited, and produced by me, Matthew Winner, with help from Chad Michael Snavely and the team at Sound On Studios. Our executive producer is Jelani Memory. And this show was brought to you by A Kids Podcast About.
Subscribe to the show on Apple Podcasts, Spotify, Stitcher, and wherever podcasts are found, and if you liked this episode, consider sharing it with a friend, teacher, or grownup. We love when you rate and review the show. We also love hearing from you! Until next time!