Talking about disabilities with kids

 

This interview is from A Kids Book About: The Podcast, with host Matthew Winner and author of A Kids Book About Disabilities, Kristine Napper. It has been lightly adapted for clarity. 

 

 

 

What are disabilities?

 

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. 

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. 

 

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.  

 

 

 

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?

 

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. 

 

 

 

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? 

 

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.

Let’s spend a few minutes learning why Kristine relies on a wheelchair in order to get from place to place. 

 

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.

 

 

SMA stands for Spinal Muscular Atrophy. Do you recognize any of the words in that name? Spinal? Muscular? Atrophy?

 

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.

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.

 

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.

Before Kristine returns to her classroom and her students, she has one more thing she wanted to make sure you all heard. Ready? 

 

 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?

 

Those are questions you can ask yourself anywhere you go. 

 

 

 

Each week on A Kids Book About: The Podcast, we talk about the big things going on in your world with a different author from our A Kids Book About series. This week we have Kristine Napper, the author of A Kids Book About Disabilities.