In her Kirkus-starred memoir, Sitting Pretty, scholar Rebekah Taussig used her personal experience with disability as a lens to imagine a more accessible world. Now she’s brought that same depth to her Kirkus-starred picture book, We Are the Scrappy Ones (Carolrhoda, April 1), which provides children and the adults who care for them with a lyrical introduction to disability culture. Illustrated by disabled artist Kirbi Fagan, Taussig’s new book invites children and their families to simultaneously recognize the challenges created by an ableist world and to celebrate the creativity and resilience that have instigated social change. On a recent video call, I spoke with Taussig about community, collaborative picture-book writing, poetic devices, and activism. Our conversation has been edited for length and clarity.

In your author’s note, you explain that this book began as a poem you wrote after visiting a day camp for disabled teens. Can you tell us more about this origin story?

I was visiting the camp as a writer, and I hadn’t been in a room with a bunch of disabled teenagers—maybe ever? When I was a disabled teenager, I didn’t have that experience.

During that visit, I noticed how much of the experience of disability was described through a medical lens. It was eye-opening for me, because that was exactly the way I described my own disability when I was a teenager.

What was it like exploring complex ideas, like the medical model of disability, in a book for children?

I studied creative nonfiction and personal writing in school, so writing for children is just so new. It was almost like an experiment. We did, like, 90 drafts of this tiny poem because every word carried so much weight. How do we pick the right seven words to convey the 200 pages’ worth of content we’re trying to express.

Also, I tend to think very abstractly. My editor was always guiding me back, saying things like, “Think about this metaphor for a younger kid,” and I’d be like, “Oh yeah. Let’s bring it back to Earth.”

One pivotal shift from the initial poem was that originally I was pointing out and naming ableism. Then, because I was writing to readers who are so new to the world, I wanted to be careful about how I presented that. I didn’t want to ignore what that world is, but I also wanted to focus on who they are—who we are—in a vibrant space of belonging. That is the tension that I am working through: I want us to be aware of what this place is and, also, how it could be different.

This reminds me of the section of your author’s note where you explain the book’s title. You mention that you love being scrappy but also resent it.

The title was originally the first line of the poem I wrote after visiting the day camp: “We are the scrappy ones.” When I started that poem, I wanted to instill a sense of belonging, but what is the thing that we belong to? Is there anything that all disabled people share under this giant umbrella? It’s a lot of responsibility representing the whole group and choosing one word for all of us.

The disability category exists because there’s some friction or tension or a mismatch between a disabled body and an environment or a community in the built world. That’s what I feel in my body in the world: This place was not made for me. The world wasn’t made for us, and that’s not right, and we want it to be right. It’s a complicated kind of belonging.

The sheer fact that we are still here is because of a certain scrappiness. A certain way of figuring out how to survive, and the creativity that comes with that.And yes, I wish we didn’t have to be scrappy. And also, I treasure that scrappiness in us.

You observe that the disability community is incredibly diverse. Kirbi Fagan’s illustrations go a long way to reflecting that diversity. Did you weigh in on them?

I had a chance to give her feedback on sketches, but we also had a team of disabled readers that looked at the text and the pictures. They gave us input like, “What about a motorized chair?” Or, “We have someone who’s blind, who’s using a white cane, but what about a dog also?” We wanted to make sure that there was not only a range of disabilities, but also that we showed differences in specific disabilities. Blindness can look like a lot of things, and people have different ways they navigate being hard of hearing or deaf. We wanted that representation to embody the real human range that we have out in the world.

You write about disability culture in your author’s note. What is it?

Because the experience of disability is so sprawling, it’s a fiction to say that there’s one definitive disability community or culture. When I imagine disability community and culture, I think about experiences I’ve had where it feels like there’s a group of people that understand something that most of the people around me don’t. I experienced it first online when I started to form friendships with people who understood things that I felt very, very lonely in.

Something you start to recognize in a culture is shared language. You start hearing about things like spoons or crip time—concepts that are shorthand for things people inside that community understand. And there are [works by] certain writers and creators in that community that a lot of us consider shared texts, like Alice Wong’s books. Also, there’s a newer piece [of disability culture]: people learning that they’re a part of a history. Seeing yourself as a part of that story is a part of that culture.

Speaking of history, several pages in the book mention disability heroes. How did you pick them?

I wanted, like, 45 people on that page! I wanted all the people from the Section 504 Sit-in, [a protest that led to the enforcement of section 504 of the 1973 Rehabilitation Act] . We had to narrow it down, so we brought in different people from different time periods and different cultures and priorities, which I ended up liking.

Some of the heroes were Kirbi’s choices. Kirbi has Crohn’s disease, and Ally Bain [the activist who authored the Restroom Access Act] is really important in Kirbi’s world. I liked that we were able to bring in an illustrator who understood the experience of disability, and that some of those people were Kirbi’s priorities, and some of them were mine.

I hope that parents who read this book to their kids will be interested in learning more about who these disability activists are, if they don’t already know.

What excites you about the future of disability literature?

Authentic disability stories are such an untapped source of storytelling in mainstream culture. I’m writing a piece right now asking, How do you live in the world that we have and also imagine the world you hope to exist? How do you believe that world is possible? As a writer, I’m always thinking about how disability disrupts traditional arcs in interesting ways.

Mathangi Subramanian is a novelist, essayist, and founder of Moon Rabbit Writing Studio.