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TOM WEBER: This is NPR News. I'm Tom Weber. There's a new children's book out from Gillette Children's Specialty Healthcare that explores how to talk to children with disabilities and whether it's OK to bring up their disability. And the answer to that question is actually the title of the book, It's Okay to Ask!

This is really a book for people who don't have a disability but might not exactly know how to interact. And actually, turns out, we might be overthinking it a little. The book tells the stories of five children who have disabilities or medical conditions and are asked about things like their wheelchair or their leg braces by other children.

The illustrations in this book are by Nancy Carlson. She's a pretty well-known name in the children's book circle here in the Twin Cities. Joining me to discuss this book and the larger topic at hand here, Richard DiPrima is a neuropsychologist at Gillette, which is here in St. Paul. I looked this up here, Richard.

Gillette opened in the late 1800s as a hospital solely for children with disabilities. That's their focus.

RICHARD DIPRIMA: All right, well, thanks for having us on this morning, Tom.

TOM WEBER: I'm glad you're here. We're also joined-- I'm very happy to have Ellie Goodman, who is a patient at Gillette. Ellie, hello.

ELLIE GOODMAN: Hi, guys.

TOM WEBER: Hi. I'm glad you're-- how old are you?

ELLIE GOODMAN: I'm 13.

TOM WEBER: 13. And where do you live?

ELLIE GOODMAN: I live in Oakdale--

TOM WEBER: Oakdale, Minnesota.

ELLIE GOODMAN: --Washington County.

TOM WEBER: Beautiful Washington County. Are you missing school right now?

ELLIE GOODMAN: Yeah, I'm missing third and fourth hour, I guess.

TOM WEBER: I won't tell. All right.

ELLIE GOODMAN: Yeah, quick shout-out to Maplewood Middle School. Hi, guys.

TOM WEBER: [LAUGHS] Maplewood Middle, I'm glad you're listening, although maybe you shouldn't be. Whatever. That's fine. I'd love to hear from you as well. Maybe you or someone you know has a disability. And you've pondered how people who don't have disabilities interact. What would you say is a good rule? What's not a good thing to do or say?

I'd love to hear from you. 1-800-242-2828, 651-227-6000. You can also tweet me, @webertom1. Or go to mprnews.org. You can click on the Live red button on the left side there. And don't call or text if you're driving.

So, Richard, I'm curious. Was there something happening or not happening out there that made Gillette say, we should write a book about this topic?

RICHARD DIPRIMA: So Gillette Children's Specialty Healthcare developed It's Okay to Ask as part of a greater movement that we have that aims to change the way the world sees children who have disabilities and the way children who have disabilities experience the world. So it was my honor to be part of the creative advisory committee made up of Gillette providers, staff, and patient families that collaborated on this exciting book.

TOM WEBER: So the first page of the book here reads, "You have a lot of questions, and that's OK. You don't have to be scared or worried or sad for us. We are kids just like you. So go ahead--"

RICHARD DIPRIMA: Go ahead and ask.

TOM WEBER: "Go ahead and ask."

RICHARD DIPRIMA: Exactly.

TOM WEBER: I'm curious, though, has it always been the recommended way? Has that really been the thing we said about how we should interact?

RICHARD DIPRIMA: Well, in general, how we look at things is that everybody has differences, things that are different about them. Some of them are more visible, and some of them are less visible. And we all know that developing deep, long-lasting relationships is very helpful for each and one of us. The more connected we feel, the better off we are.

And the difficult part that we were noticing the gap was how do people bridge curious questions that they have, very generous questions that they have with others who look different than them. And so this book gives a way through the characters for other children to experience that.

TOM WEBER: Ellie, tell me your story.

ELLIE GOODMAN: Well, I was born three months early with cerebral palsy on my left side, affecting actually, very mildly my left hand and my left foot. I have gone to Gillette since as long as I can remember, and I love going there. It kind of feels like I grew up in a hospital. But in a way, that's a good thing because I have amazing friends there. I have amazing-- I get amazing care there. And it's just a great place to go.

TOM WEBER: So you had cerebral palsy on your left side. But your walking was affected, right?

ELLIE GOODMAN: Yes, I do have to wear a AFO, an Ankle Foot Orthosis to help correct the walking, and so I don't limp or I don't waddle when I walk. The limp is still there, I notice, when I walk. But it's a lot less than when I was two or three.

TOM WEBER: Do you remember when you were growing up other kids might see you and see that you had a limp?

ELLIE GOODMAN: Yes, when I grew up in elementary school-- or yeah, I got asked a lot of questions. And most of the time, they were very nice. A lot of times, also, they were not so nice. They were a little rude. And that's generally a rule of thumb when people ask me questions. If you're rude or you're sort of impolite when you ask a question, it's going to be very hard to answer, because you're kind of almost shocked to-- it's going to be hard to answer. And that's why I wish this book would have been around when I was younger.

Because a lot of kids didn't know how to ask. They thought, oh, she's wearing cast, it'll be off in six weeks, and then she'll be normal. And then they saw me throughout the school years still wearing different braces, but it's still the same thing. And they're like, oh, wait, then what's wrong with her? And then people took that the wrong way, and they started bullying me.

TOM WEBER: Hmm, I'm sorry that happened to you. Doctor, that actually-- I can remember breaking a foot when I was in sixth grade. I broke the foot. The cast was on. That first day back in school, I was the center of attention. Hey, what happened to you? You got a cast. But that went away. I mean, it's weird to think about how everyone wears a cast probably at some point in their life. But if it's not seen as this temporary thing, then it becomes the situation where kids are picked on.

RICHARD DIPRIMA: It can move into that direction. Obviously, with all of us having differences about us, it still doesn't feel good if those differences are picked on. So more than anything else, it's nice when people can look at, well, yeah, we might have these differences, but what do we have that's more in common? And how can we build on that? And that's what we hope that this book shows is that there is so much more about us that is more alike than is different.

TOM WEBER: The book is called It's Okay to Ask.

RICHARD DIPRIMA: That's right.

TOM WEBER: But I have to ask about that because I have to say, I feel like whether I infer-- whether I drew the conclusion or whether I was actually actively taught growing up, I feel like I was taught or felt growing up that it's actually not OK to ask. It's actually quite rude to even ask.

RICHARD DIPRIMA: Right, right. And to us, that's one of the opportunities that we have towards moving attitudes forward towards more acceptance and inclusion. And when people feel more comfortable to ask questions with genuine curiosity, it really helps.

As Ellie was talking about, it really has to come from the heart. They have to be good questions, things that people are wondering about with curiosity. And more importantly than anything else is if each individual, as they're talking, has a sense of trust in one another so that they can field questions in a comfortable way. And sometimes people aren't ready to answer questions, and that's OK, too.

TOM WEBER: So, Ellie, you mentioned sometimes you would get a question that was rude. I'm thinking of, for example-- I wonder if anyone ever said it this way, what's wrong with you?

ELLIE GOODMAN: Yeah, I normally get that question more from younger kids like kindergartners and first graders who they see it. And they're like, oh, what's wrong? Like, did you hurt yourself? And that's easier to answer than if a peer or even someone older than me asks, hey, what's wrong with you, why are you limping? And that makes it harder to answer.

Also, another good rule that I try to tell people when they meet me is asking questions is better than staring and looking me up and down or whispering behind my back, because that's not going-- you're not going to get a straight answer. You're not going to get an easy answer. You're going to get rumors, or you're not going to get the full truth. And that just creates a bunch of problems.

TOM WEBER: And, Richard, using the phrase "what's wrong with you" suggests there's something wrong, and there's not.

RICHARD DIPRIMA: Right, and an interesting thing is that each one of us are experts of our own experience. And in many ways, when others are asking questions, they're showing that they're lifelong learners and that they'd like to learn from the other person's experience. And when that's done in a really nice and respectful way that promotes dignity, it can be a beautiful way to develop relationships.

TOM WEBER: So what would be a better question for me to ask Ellie instead of, what's wrong with you?

ELLIE GOODMAN: A couple of polite questions that I still get now are like, what's that on your leg? Why are you sitting out in gym? And it's not so much the question itself, it's more the tone of voice. And it's more how you ask it. And it can change a relationship, depending on how you ask it.

TOM WEBER: So you can sense--

ELLIE GOODMAN: Sort of, yeah.

TOM WEBER: --when they ask the question if they're being nice about it. You also had a number of surgeries, I believe. So you spent some time-- I think you had a walker. I think you had a wheelchair at some point. Is that right?

ELLIE GOODMAN: I've had so far two surgeries on my left leg, and I'm planning on having a third just to take out some hardware in my hip that I have right now. But yeah.

TOM WEBER: You're using a doctor's term. I've got hardware in my hip.

ELLIE GOODMAN: It's a plate and screw if anyone knows what that means, just basically holding a bone that was cut. Just holding it in place so it can mend, and then that can stand for as long as the doctor wants it to be in there. But--

RICHARD DIPRIMA: Yeah, you've been through some amazing experiences overall. And you've worked with multiple people, right?

ELLIE GOODMAN: Yeah, I mean, I've been in wheelchairs. And then people, if it's bigger-- I feel like the bigger the equipment, people see it. Almost seems like it's easier for people to ask questions. Like, if you're in a wheelchair, they're like, oh, how did you break your leg?

And I can be like, well, I didn't break it personally, the doctor did. He used a saw in surgery, and then I explained my story on what happened. Or when I was using the walker, that was a little harder because people see walkers as older, elderly people use to help. And it's like, no, I use them now too. Kids can use them, too.

TOM WEBER: I tell you what, the doctor broke my leg, that's a good conversation starter. That's going to start some conversation. That was an interesting point Ellie made, though, doctor, about the bigger the equipment, the more toys you have, the more gadgets you have, it may actually be easier for the rest of us to ask about it.

RICHARD DIPRIMA: It could be. Sometimes people notice certain things that they're more comfortable to ask about. And when it is very large equipment that they've never seen before, their natural curiosity comes forward that much more. And so it can be a nice way to start that conversation. And what's really nice, more than even talking about equipment and everything, is that at the heart of this is the main question that people want to be asked of them is how they can be closer together, how they really can be friends.

TOM WEBER: So one of the young children in the book is named Ahmed. And the question from the kid across the yard or the park there says, can we play games on your tablet? So he uses a tablet to communicate presumably because he can't speak. Is that right?

RICHARD DIPRIMA: It's an augmentative communication device. And of course, Ahmed has a great comeback to that question, which is, yes, you can play some games. But really, mostly, he uses it to converse with others and to tell jokes, because he loves to have fun. And others can relate with that as well. And then they come together around having fun.

TOM WEBER: But there's also this sense of if a disability is more visible versus the invisible disability, are there problems with communication there when you differentiate between those?

RICHARD DIPRIMA: Well, sometimes people might not know the questions to ask when disabilities are less visible. Because as Ellie was talking about with the big equipment, it's easier to notice something and to ask something about it. So that's where increased awareness through that relationship with one another can really help towards knowing, oh, this is what's going on, and maybe then generating some back-and-forth discussion.

TOM WEBER: We're talking with Richard DiPrima here from Gillette Children's and Ellie Goodman, a 13-year-old who's a patient over at Gillette. We're talking about a book that's out here that's called It's Okay to Ask with that message, it's OK to ask. We're talking about communicating with children with disabilities.

I'd love to hear your thoughts, especially if you have experience. You or someone you know has disabilities. Maybe you're thinking about the interaction that people have, the awkward conversation, the not so awkward conversation. What are the good rules and the like for us? Pass it along. 1-800-242-2828, 651-227-6000.

So, Ellie, I remember you mentioned the bigger the equipment. So as you keep getting-- you're going to have another surgery. But you keep getting better, right? The limp is less.

ELLIE GOODMAN: Yeah, and it's not just like surgery can fix everything. I need to remember to stretch at home and do my exercises, because I do go to therapy at least once a week. But it's a team effort. Because not only can the surgeries help fix stuff. But also, you need to work on strengthening muscles.

Because I'm still-- I feel like I still can't run as well-- I just feel like I run better now, but I still can't run as fast as I did in fifth grade versus to now because of the hip surgery and how just my gait changes. And I need to change how I run and how I walk. But it did get smoother. And people do notice like, oh, my gosh, you're not limping anymore.

TOM WEBER: Oh, that's great.

ELLIE GOODMAN: I get that when I see someone after about six months and like, oh, my gosh, your limp is gone. Are you healed? And I'm like, it's a lifelong thing. So, no, but yes. It's yes/no kind of question.

TOM WEBER: That's an interesting point, too, because, Richard, I see the kind of work that you and other hospitals do with children, especially you work for months and months and months. And there are some cases where the big victory is a really bad limp. You know what I mean? You know what I'm saying?

So this person has really horrible difficulty walking. But just getting up to, progressing to the point where you have a really bad limp, that's great for the patient and for you as the doctor. But then this person goes out in the community. And the rest of us of just see a person with a limp. You know what I'm saying? Well, how would-- I mean, that's an interesting aspect to me, too. Say more about that.

RICHARD DIPRIMA: Absolutely. And I think some of the main things to know about various things that happen within the organization is that individuals are at different points on their journey. And sometimes they're just after a surgery. And so they're at a different point in their recovery.

But as Ellie was pointing out, looking at it as a lifelong condition and understanding that and accepting that can really be helpful for people to look at things holistically versus just that one symptom on that day.

TOM WEBER: We have a call here from a Nick, who's in La Crescent. Good morning, Nick. Go right ahead.

AUDIENCE: Yeah, I was saying that everything that you guys have been saying has crossed my mind at one point or another. I would have to say-- I had a little brother with a disability who passed away about five years ago. Actually, yesterday would have been his 19th birthday.

But when it comes down to it being better to ask, it's almost refreshing when somebody asks, What's your situation? or, I guess for the lack of a better term, What's wrong? Simply because some people are caught off guard and don't know how to word themselves. And it's just a relief to be able to talk about it sometimes, you know?

TOM WEBER: And, Nick, your brother, he was confined to a wheelchair, is that correct?

AUDIENCE: That is correct. He had a peripheral neuropathy, feeding tube, colostomy bag, you name it. But hindsight, after he had passed away, we had begun to suspect that it was juvenile Huntington's.

TOM WEBER: Oh, interesting.

AUDIENCE: But it was too late to confirm anything.

TOM WEBER: Nick, I'm really glad you shared that with us, and I'd love to put that to Ellie. Do you sometimes feel that he-- what he said there was that it actually was a relief sometimes when people would ask. Do you feel that way?

ELLIE GOODMAN: I guess yes and no, because it's sort of a relief. Yes, because it's easier than just assuming. But it kind of gets tiring answering the same question over and over. And I have to be like, OK, they haven't heard the story yet, even though you've repeated it to different people a hundred different times. They haven't heard it yet. Just be patient with them.

And sometimes I do have to dumb it down for those younger children that do ask me questions. Instead of being like, oh, I have cerebral palsy and I wear an AFO and I used to wear an SMO-- and it was a shorter brace that I wore. I have to just dumb it down like, oh, I have a disability, and I have a little limp when I walk. And it satisfies their curiosity for a little bit.

TOM WEBER: I have to say, you're exhibiting more patience than some adults that I interact with, too. So I'm going to give you a lot of credit for that as well. I appreciate that. Another call here from Jennifer in Minneapolis. Good morning, Jennifer.

AUDIENCE: Hi, good morning. I love this topic, and I can't wait to read the book. I just had a quick comment about timing, about how you ask a question that some of the best questions I've been asked because my four-year-old has a visible disability, both cognitive and physical.

And the best questions come when I'm in relationship with the people, when we already have some sort of relationship either at preschool or things like that. They ask really thoughtful questions. Some of the tougher things have come when we're at the park and someone wants to educate their child in the moment and not knowing that my son can understand more than he can speak and the timing-- and I try and give body signals and things like that to let them know when it's a good time to ask.

But some people have an agenda all to their own about why they're asking, some sort of agenda. And they're not really picking up on the fact that we've lived with this for years. And this is just regular life. This is just us. This is who we are. It's not a new thing. It's not a bad thing. So that can be very interesting when people don't pick up on those clues about when we're just really trying to enjoy our life.

TOM WEBER: Jennifer, thanks so much for sharing your experience as well. Richard, you were nodding while she spoke.

RICHARD DIPRIMA: Well, absolutely. I think one of the things to highlight from what she was talking about is just that experience of being in the relationship and how important that is. And our hope really with this book is that it starts bringing some of the awareness of how children from a young age starting around age three to age eight can look at how can they ask questions in a way towards building those relationships.

TOM WEBER: But even if I'm not in a relationship, if we're at the bus stop, I can ask.

RICHARD DIPRIMA: You can--

TOM WEBER: It's--

RICHARD DIPRIMA: --but being mindful of what's the response. And then that's where the give and take comes in.

TOM WEBER: Ellie, I want to thank you very much for being here as well. What would you say as a parting piece of advice for all of us here?

ELLIE GOODMAN: I guess it's OK to ask. Don't be afraid to ask. And just also remember that everybody's disability is different. You're not going to find someone with the exact same disability you have or someone else that has-- people have different disabilities. And even though it might be under the same term, it can vary in severity. And it has many different types.

TOM WEBER: For example, cerebral palsy.

ELLIE GOODMAN: Cerebral palsy, yes. It can range to just mild or very slight limp to being confined to a motorized wheelchair with no speech capabilities and can't walk for the rest of their lives, almost.

TOM WEBER: This is a very interesting to talk about. Ellie Goodman, 13-year-old from Oakdale, thank you for getting out of a couple classes here today. I think you're heading back to school. But thank you so much for being here. And the book is called It's Okay to Ask. Richard DiPrima from Gillette Children's, thanks so much for your time as well.

RICHARD DIPRIMA: Thanks for having us on, Tom.