We Are the Scrappy Ones Debrief

Two Grown Up Sick Kids Talk Creativity, Boundaries, Language, and Binaries

Folks using screen readers and anyone who prefers to listen — there’s an audio player bar just below this paragraph, with a play button on the far right. Please let me know if you have any trouble with it.

A photo of Rebekah’s desk cluttered with books, plants, a coffee mug, a microphone, a water bottle covered in stickers, her computer in the center, and on the screen, Rebekah and Kirbi both hold up their copies of We Are the Scrappy Ones.

Friends! If you’re a regular in this Substack corner, you know that the picture book I wrote – We Are the Scrappy Ones – came out earlier this year. And today, I want to share something a little tender and sprawling – I bring you the first (and quite recent!) one-on-one conversation I had with the book’s illustrator, Kirbi Fagan.

The book We Are the Scrappy Ones sits on a table covered in medical supplies. On the cover, a group of kids hold hands making the shape of a star between them. They almost look like they’re floating in outer space surrounded by yellow stars.

There are plenty of parts of writing a picture book that are significantly different from writing a memoir, but one great surprise was how little communication I had with Kirbi throughout the book making process! We had one quick group zoom at the start of the illustrating process, and then all book-making communication was filtered through our publisher. Like we didn’t chat at all even a little bit. Apparently, this is pretty standard in the industry – who knew? Not I! – but there are good reasons for it, and I’m sure once upon a time somebody somewhere learned it the hard way. I’m not exactly sure what I imagined our author/illustrator dynamic would be (although, I’m just realizing that one of the only pictures of author/illustrator duos I have in my memory bank is of a high-strung author/crank Billy Crudup initially loathing then falling recklessly in love with his gorgeous illustrator Mandy Moore in the 2007 film Dedication, so I can see how my expectations might’ve gotten distorted).

All that to say, this month, the two of us finally hopped on a call of our own and had our first ever one-on-one conversation. Maybe it shouldn’t have, but it took me off guard how much this exchange moved me. Something about sitting across from someone who also grew up sick – who learned to smile for doctors, sometimes to her own detriment – who found solace/power/escape/connection in creativity. But also something about sitting across from someone whose experiences are not yours – who moves through the world with a different set of hurdles and question marks. I find this push and pull of “you too?” alongside “oh, that’s different from me” to be a very juicy space. Tracing together the ways we both brought all of these layers into the little book we created – well, it made my eyes well.

A collage of photos. On the left, a photo of Rebekah as a kid, sitting in my hot-pink wheelchair wearing a long denim dress. In the center, the cover of the book, We Are the Scrappy Ones, on the right a close-up photo of Kirbi as a kid, smiling at the camera. Above the images, the text “We live, We adapt, We defy.” Yellow stars and a squiggle line surround the photos. Illustration by and image arranged by Kirbi Fagan.

While we don’t talk about it on the recording, Kirbi and I had actually received some really happy news before we got on the call – We Are the Scrappy Ones was selected as one of the Best Picture Books of 2025 from Kirkus Reviews! Isn’t that cool? If you don’t have a copy of it yet and would like one, you can order a signed copy from my beloved local bookstore, Monstera’s Books.

I’ve included the transcript of our chat below (and if you scroll to the top of this essay and hit play, you can listen to the conversation with our back and forth voices). But before we get there, I wanted to note a few parts of this conversation I can’t stop thinking about:

1. The way Kirbi honors her younger self’s privacy. Oof! Growing up as a patient, it’s easy to learn that your body/your story don’t belong to you. I am three minutes away from turning 40, and it’s like I’m just beginning to realize that other people don’t casually flash audiences full of strangers. Like we don’t have to serve our medical histories on a platter just because someone asks for them. What a thought! Kirbi models this boundary so gracefully, and I’m obsessed.

2. Our unspooling of the word SCRAPPY. We reflected on how our younger selves related to it, what makes the word complicated (perhaps how it differs from the word “resilient”?), and how Kirbi understands the word as a visual artist/arts and craft person. The ideas that came out of this inquiry were SO FASCINATING to me. (!!!)

3. Our reflection on the drawbacks and benefits of labels, especially as it relates to the “apparent”/“non-apparent,” “visible”/“invisible” binaries so often used in the world of disability/illness. The difference between these two boxes has become increasingly interesting to me, in part because my partner Micah now has what one could call a “non-apparent” disability. Working it through with Kirbi gave me some new language for understanding without tidying up any of the human mess of it all.

4. Exchanging impressions of what our younger selves would’ve thought of a book like this one. Our honest exchange about this made me laugh and felt just right.

Okay, no more gabbing from me. No more housekeeping – let’s get into the conversation!

One long pink swipe made by Rebekah’s son with paint.

Rebekah [00:00:00]:

Yay! Hi, it’s Kirbi Fagan.

Kirbi Fagan [00:00:04]:

Hello. Great to be here.

Rebekah [00:00:07]:

I am so happy to be talking to you. As someone who is much more in the worlds of writing books with words and not used to the illustrator part of things, I didn’t realize how little we would get to talk during the making of this special book. And so this is just a huge honor and delight to me to get to be in your presence and ask you all these questions that I’ve been wondering about.

Kirbi Fagan [00:00:28]:

Oh, I’m so excited. And, you know, I hope that, you know, our togetherness today will just kind of even. Just enrichen this book even more.

Rebekah [00:00:37]:

I think so. I feel it. I feel it happening. So, to start off, I wanted to ask you a little bit more just about your childhood, your scrappy childhood. When I was working with the team in this intimidating phase of picking an illustrator - and who would want to illustrate this book, and what would that look like, and who would the right person be? - it felt really important to us to work with someone who understood some of this experience from childhood, like from these early days. And so I was wondering if you could just speak a little bit. I know you wrote about this in the back of the book, so you’ve spoken about this a little bit before, but can you talk to us a bit about what your early scrappy years were like?

Kirbi Fagan [00:01:27]:

Yes, yes, absolutely. And in those early days, you know, I was struggling a lot with GI symptoms and arthritis, and I was a determined little girl, and I was determined to not let it stop me. And I don’t want to say too much, because at that time, I, you know, I was locating my courage, and I was learning about the things that I could overcome, the things that I could survive that I didn’t know that I could survive. But I was very little. Kirbi was, you know, very concerned about what others thought, and, you know, she didn’t want to be talked about in rooms that she wasn’t in. And she, you know, she didn’t want to hear about being on the prayer list or being on, you know, this or that. And so, um, I. I still honor her today in that way and not wanting to share too much of those young, young years.

Rebekah [00:02:29]:

Oh, I love that, Kirbi. I admire that line that you’ve created for her, because I resonate with that a lot. It has actually taken me a very long time to protect that younger version of me. And I don’t know if this resonates with you or not. But I think maybe what you described sounds familiar in that for a lot of kids who grow up sick or disabled, they’re in hospitals, there’s this way in which your body, your story, don’t really belong to you. And when you learn that as a child, I think it can be difficult to learn that you have a boundary that you’re allowed to and that this boundary is good for me.

A more recent example of this was that there’s this photograph of me being tattooed for radiation as like a two year old baby. And it is a very heavily metaphoric photo. I mean, it’s just like, it’s very evocative. It’s like it really conjures the experience of, I don’t know, like, medical violation. My shirt is pulled up and it’s like almost over my mouth, like a gag. I mean, it’s just like this grainy medical photo. For a long time I was sharing that picture publicly. I would put it on like workshop slides and stuff. And it was only in like the last year that I started to realize, like, why does anyone need to see this picture of this child in this moment? And I guess part of that feeling is like I didn’t feel protected necessarily. And I want to be the adult in the room that is protecting that child.

Kirbi Fagan [00:04:10]:

Right.

Rebekah [00:04:11]:

I’m curious how you learned that. Like, where did that, how did you learn to have that boundary, that edge?

Kirbi Fagan [00:04:18]:

Oh, it, it’s taken a long, many, many, many years, but I think I really realized it when, you know, because it is so invisible, you know, I wanted people to know me, you know, right away. And I was, you know, in those harder times, I was kind of like this all or nothing. Either you know the whole story or you don’t get my friendship at all. You know, it was like you accept it all or nothing.

And I remember when I first went into therapy, like in my mid-20s, and I brought, I had collected hospital bracelets and just like Ziploc bags of bracelets. And it was like, this therapist is never going to believe me if I don’t have this proof. You know what I mean? And when I came in and I’m with my bags of bracelets, I’m like, oh, oh, this is, you know, that was a really big eye opener that I was, you know, I’m still that little girl trying to prove and trying to have control of what everyone knows about me. So it was Kind of a slow shapening. I think, you know, after that.

Rebekah [00:05:38]:

I’m picturing almost like the courtroom where you’re like, this is the definitive evidence. See, here’s the proof. And you need to see this to understand me. And so you think that witnessing that in yourself as an adult was sort of the beginning of unspooling that thread a little bit?

Kirbi Fagan [00:05:56]:

Absolutely. Like, nail on the head.

Rebekah [00:05:59]:

Yeah. I think this is a big thing that I’ve been grappling with as an adult, and I think that is unique, probably is quite unique to those of us that were children when a lot of these experiences started, which does make me think about our book and thinking about you, like, you coming to this manuscript as this adult who has this specific set of experiences in hospitals with disability. And then you kind of learn to have these boundaries around that little kid and particularly protect her privacy. What did it feel like to first read the words for this book?

And I want to point out and say also in this question, part of my curiosity about this is that I would have imagined before going through this process of making a picture book that it was a lot of work, but holy moly. Like, witnessing the amount of work and time and energy and care and attention and heart that you as an illustrator put into bring these words to life was very striking to me. And so I’m thinking it takes a lot to commit to and want to do that. And so I feel very humbled and honored that you were up for that for this book. And so it makes me wonder what about these words, if there was anything that tugged you or how you experienced them that kind of motivated you or gave you enough of a push to want to actually spend that much time with it.

Kirbi Fagan [00:07:38]:

Yeah, yeah. It is such a huge commitment. And, you know, we, as creatives, we have to pick and choose the projects that we take on. And. Oh, you’re gonna make me cry, and we’re like five minutes in. Thank you. Thank you for saying that, because I wanted to do right by little Kirbi and little Rebekah so much, and I think that was such a driving force. But I remember getting the manuscript, and I loved the title. I loved the title. And I remember at our first meeting, which was rare to do, I asked like, where’d this title come from? And I, we didn’t get the chance to talk about it more, but, you know, as everyone was kind of explaining it to me, I was like, oh, I’m with you. I’m there. I get it. Like, I love the term scrappy because it’s like this word that’s like, you’re powerful in your weakness. And oh, I just love it. And growing up, my dad, he always called me Bones. Growing up, that was kind of my nickname. And, cause, you know, I was nothing but bones. And so, like, my nickname Bones. And then Scrappy. Like, there was just this, like, little thread between that. That I loved. I loved that. And then the poem showed me, not that I had any doubts, but showed me that you got it. You got it, and you understood the full spectrum of what it’s like to grow up, you know, dealing with this. And I think some of the words that I was just, like, in love with. Live, adapt, defy. And I find, like, I’m incorporating that in my life now. Like, live, adapt, defy. Because that’s what we did.

Rebekah [00:09:49]:

That means a lot to me to know that those words resonated with you. I feel like a solidarity. The way you said it was like there’s some kind of deep knowing. And I’m curious also about this word. Scrappy is also interesting to me. And I think there are a lot of layers to it, and I think that not all of the layers are terribly comfortable to everyone. Which is part of why I, like, love hearing how you talk about it. Because we resonate with what we mean by that word and how it sort of, like, feels like a part of our spirits and forged into us - knit into us in some way. I think resilient is another word that people feel complicated about. Right? It’s sort of this idea that’s like - but I don’t want to be resilient, and it’s not fair that, you know, this isn’t fair. I don’t want to have to be scrappy, you know, like, that part of it. Do you have any of that, too? Like, is there a part of that. Is there a thread of that for you too? Or how do you think about that side of it?

Kirbi Fagan [00:10:45]:

You know, I think scrappy offers this idea that resilience doesn’t. That the scraps, that there’s many sides of them. I know I was, like, interested in putting, you know, some quilts in the story and things like that, because it does mean all of the layers, and it’s not all about being a fighter. Right? It’s not just about being a fighter, because we’re more. We’re more than that. And so, yeah, I think it’s perfect.

Rebekah [00:11:21]:

I’m actually a little obsessed with this, because what you’re bringing out in the word, I thought about a little bit, but I think as like, a visual artist, you probably are having your thumb on it much more precisely, which is the, like, arts and crafts of scrappy. Right? Like, all of the pieces. And when you think about quilt. Yeah, that’s such a different word. It conjures such a different energy than resilience, which is the knitting together something new, knitting together something maybe unexpected, but making something, you know, like, making something.

Kirbi Fagan [00:11:56]:

Like using what you’ve got.

Rebekah [00:11:58]:

Yeah, yeah.

Kirbi Fagan [00:11:59]:

Using what you have. All that you have. Right? All that we are.

Rebekah [00:12:06]:

Yeah, yeah. And you think about even just the dimension built into a quilt of, like, it’s this piece and this piece and this piece and this piece. And then together, it makes this one thing. It’s complete and it’s all of these little different, like, pieces. And even the pieces can be different shapes, and somehow we find a way to weave that into one thing. Oh, I like that so much, Kirbi.

Kirbi Fagan [00:12:30]:

And where did those scraps come from? Right? I mean, I think when we talk about resilience or, you know, these opposite traits. These traits that are very opposite coming together, too. And so, you know, the fabrics and the colors and the different ways that they come in.

Rebekah [00:12:53]:

This feels so right because it’s like the opposite, because so much of what I talk about in my experience of disability is the both and of it. It’s the, like, contradictory truths. It is like the limitation next to the expansiveness. It’s the, like, profound loss next to the, like, sheer delight. I mean, they’re, like, all coupled up right next to each other. And then you have a quilt with these different scraps, you have them brought together in a way where they actually are, like, they’re in conversation with each other. These two edges.

Kirbi Fagan [00:13:24]:

Yeah. And you speak on that in the book of holding this joy and pain at the same time. And I think that is really difficult for people to understand who haven’t, you know, had these experiences - that polar opposite. You know, I did a lot of creative things to distract me from pain to pass the time in bed and, you know, whatever it may be but, you know, I really think that humans are meant to make things, and we’re makers and the joy that anybody gets when they produce something. And so here I am, my flesh becoming less, but new things were coming out, you know, and being, like, completely giddy, up in the middle of the night, you know, not being able to sleep because of steroids, you know, young, you know, and just having a blast in my crafts. Right. But yet really sick and taking time, you know, to care for that. And that, hey, that’s another one of those opposite dualities that, you know, that we’re saying. But that is very real to me.

Rebekah [00:14:46]:

I was so struck in the author/illustrator notes that are in the back of the book. Yours is beautiful. So anyone who hasn’t read it yet should flip to the back of the book and, and read Kirbi’s story. But I was so struck by the way you described that in that letter. And I’m just going to read some of your words back to you, if you don’t mind. It conjured such a image for me. “When I couldn’t hold my hand steady enough to thread beads on a string, I rolled paper mache to sculpt beads. I was sick. And I was also creative.” You’re right. That is another example of that - both of these things are true. They’re happening at the same time, and one does not diminish the other. They’re both a hundred percent happening side by side on top of each other.

So maybe we could spend a little bit more time thinking about that creative piece. And I’m curious if you have anything else you want to say about the relationship between creativity and sickness and, or, like, how that has continued to evolve. The girl that was making bracelets for everyone on the floor. To see that start in you so early, I’m curious if it has evolved now that you’re an adult. But I love that in you.

Kirbi Fagan [00:16:05]:

And that’s the adaptation, right? That, like, okay, so, you know, your picc line’s messing with your knitting, so you’re gonna have to find something else or that, you know, whatever it is working around it, and, and that in itself is really creative. Right? And I think that as I was realizing the courage that I had to go through - creativity takes courage. Oh, my goodness. I taught for a little bit, and I know you have a lot of teaching experience. And, you know, I find what I was doing most in those mentorships was encouraging creatives to be bold and to step out and to know that, yeah, it’s scary to make stuff. It’s scary to try something new and to fail and to learn those new things. And I think because of the courageousness that I was acting out, learning how to do a new craft or something was just like, well, duh, this is nothing. This is nothing.

And, and even a lot of people don’t realize, but I actually didn’t start drawing until like, late high school. I was really, you know, I was always really creative, but that drawing aspect came much later. And so that was really interesting to me to just decide to pick up drawing, you know, out of nowhere.

And it’s amazing how the arts have served me because it has offered this other avenue to life, to interacting with the world in a way that I couldn’t show up for a 9 to 5 job. Right? You know what I mean? I wouldn’t have been able to go through the typical college experience, but art school, well, that’s a little more flexible, that has, you know, different avenues and gosh, those arts, they just continue to just serve.

Rebekah [00:18:22]:

Yeah, it’s interesting the way that as you’re talking, I sort of have an image of like a river and the different ways that a river would twist and turn, and the water would flow in a different direction. And the creativity and the illness might kind of have this roundabout sideways path. On my Scratch that parenting podcast, we had the Catchpoles, James and Lucy Catchpole on.

Kirbi Fagan [00:18:47]:

Wonderful.

Rebekah [00:18:48]:

Yes, right? Aren’t they so good? But they were talking about in that conversation limitation and restriction, I think, was the word that they used. Lucy is in bed like maybe 95% of the day. And they were talking about how that restriction or that limitation is sort of like a particular kind of parameter that leads to a very specific kind of life. And it reminds me of something I think about a lot, which is in creativity, often restriction or limitation is the container for a specific art form. So like a poem, a haiku has a very specific limitation. These are the confines in which you are working. And the limitation or the edge is what makes it the thing what it is.

And so I see something interesting with this disability, illness and creativity, and these pictures of you with like the picc lines in the way. We got to find this other, you know, like, working within these very specific limitations. It makes sense to me that that would lend itself to creative expression in lots of different forms as your body is kind of bending. I’m mixing all the metaphors here, but, like, bending the river in a different direction. Right?

Kirbi Fagan [00:20:05]:

Yeah, it’s kind of like, you know, some artists, I think, love to be put in a box, like, give me some rules and then let me break them. And then others, you know, it can be very daunting to be like, here’s a blank page. Write whatever you want. So in a way, yeah, the, the limits of life kind of translate directly.

Rebekah [00:20:30]:

It’s so juicy. I love that. So with our characters and scrappy ones, they are very real and alive for you. You know them, you know their hobbies. They all have names. So you were clearly creating these full people behind the images that we see when we turn the pages of the book. Can you tell us a little bit about them?

Kirbi Fagan [00:20:54]:

Yeah, absolutely. It was very overwhelming to balance. I think there’s almost like a hundred characters, like, in the book itself. Like, there are so many, and they all have stories, and they’re all unique, as we say. And I remember trying to kind of keep it straight in my head and talking with the editor and talking with the designer - I really try with my sketches not to explain too much, and because I really want to see what people see from it. And I remember, like, trying to describe some of my sketches and being like, oh, the one with XYZ condition. And I just, like, hated that. I hated that. And so I’m like, I remember just telling the team, like, okay, this is Joey, because we gotta talk about Joey. Or we gotta talk about so and so. And that just really allowed me to dig into their story and add these different dimensions and so that we could see them on different days. Right? Because things look so different. And I know we want to talk a little bit about, you know, invisible illness and more apparent illnesses, but I think even those with very apparent illnesses or disabilities, they experience that as well. I think about, you know, someone in a wheelchair who’s driving in a car, right? That is their scene in an invisible illness way in that moment.

Rebekah [00:22:41]:

Interesting. Yeah, yeah, yeah, yeah.

Kirbi Fagan [00:22:44]:

So all of those ways, I’m like, how can I show this person from every side in their strongest moments, in their weakest moments, in their most joyful moments, blending all together. And then I was like, okay, I feel good about who they are, you know. And I don’t think I would have felt that way had I not had the experiences that I had. And of course, just in life trying to know that people are so much more than what we see. Right? That’s kind of a lesson for anyone. But always, always offering that grace that it’s not all apparent. Yeah.

Rebekah [00:23:30]:

And it’s not all a list of symptoms. It’s not all a list of diagnoses. It’s not all like - that’s what I’m also hearing from you. I think I remember when we were creating image descriptions for the different pages. Were you a part of that process too?

Kirbi Fagan [00:23:47]:

I was.

Rebekah [00:23:48]:

There were some moments in my memory of it where it was like, oh, we, like, we only need to literally describe what is illustrated there. We don’t need like a list, a diagnosis or we don’t, you know, like, we just want people to have a description of what is on the page. It doesn’t require a list of...

Kirbi Fagan [00:24:10]:

And it’s so interesting - it was a little bit conflicting too, because if the diagnosis wasn’t there, I was like, okay, but then are we missing an opportunity for someone to connect with that character? Oh, because that’s what I am. And that’s, you know, then they can connect. But, you know, I know, like, in my scrappy community, like, even some of us with similar conditions have very varied, you know, stories and, you know, a lot of what I’ve been through has been complications because of whether it’s a complication of a surgery or an infection or medication or, you know, these things. And that is outside of that list of symptoms and diagnoses, but it is a part of our full experience.

Rebekah [00:25:02]:

Oh, yeah. I love the way you’re thinking about that because of course, it’s another both/and. Right? It’s like you can see the value of naming something and then also the complexity of that and having in the case of like an image description, having to make a choice one way or the other. But there is something about landing on this side of it where we just have a book full of a variety of kids that to me match my lived experience of the world of like, what it’s like to actually be around all kinds of kids. And then just to get to sit with them and be with them. There’s a real value in that.

I think maybe this is a good time for us to dig into a little bit about this binary that we have in our language between visible and invisible, or some people use apparent or non apparent disabilities. And I know in the way you talked about it in your note saying that Crohn’s disease is often under the umbrella of quote, unquote, invisible disabilities, but that it does not feel that way to you. So can you talk more about your lived experience and how you think about these words? Is this a useful or completely useless binary that we’ve created? How do you think about it?

Kirbi Fagan [00:26:15]:

Oh, there’s so much to talk about here. And at the core of it, we all want to be seen. We all want to be seen and accepted for who we are. And there are hurdles that are different for people who have diseases that are more invisible and are not. There are different hurdles, and I very much acknowledge that. And Crohn’s has never felt invisible to me. And in ways, I find that my scrappiness hides the condition more. Because the times that I’ve chosen joy, because the times I’ve choose to create in the hospital, you know, I can remember a time where I had a big surgery and they had said, well, I think you’re ready to go home, and I got home, and things did not go very well and I ended up back. And I remember the doctor being like, oh, well, your big smile fooled us all, right? And so it’s like this thing that I was doing to keep myself going was also the thing that was preventing me from getting full care, you know?

But I see Crohn’s as visible in kind of two parts. There’s the social aspect of it, and then there’s this physical aspect of it. And maybe I’ll start with the physical aspect. And so for me, everything is under my clothes. Everything is under my clothes. And there were times in my life where I was maybe okay with showing a feeding tube or showing, you know, showing this or that. Especially in high school, I was a little bit more edgy about letting those things hang out. Then there’s, you know, there’s the scars and there’s, you know, these pretty, like, barbaric situations that are happening in our pants, you know, that are private. I think a lot of people with Crohn’s like myself, we suffer from fistulas, which are tunnels that grow, that form, off of the intestines, and we have permanent drains in those areas. But you’d never know - you’d never, ever know. And to me, like, in my scrappy community, for those, you know, there’s this, you know, some of the people know what we’ve got packing, and there’s just this solidarity of, like, I see you. I know nobody else knows in the room how hard it is for you to sit like that, but I see you.

And from the social aspect, you know, look at what’s on my plate at dinner or what’s not on my plate. You know, look at just when I’m not around, like, falling off the edge of the earth, like, just disappearing for long periods of time. And, you know, to me, that’s very apparent. Or being in classrooms that didn’t suit me or that, you know, weren’t appropriate. You know, there’s a lot of questions of, like, well, that child is in that classroom, so X, Y, Z must be true. But, however, the longer people spend with me and the longer people are around me, eventually the great facade just comes crumbling down and it’s just fully there. It’s fully there for those who want to see it, and who will acknowledge it, who aren’t scared of it. And it’s also funny because I learned how, like, kind of like everyone is in their own world, you know, and how the things that, you know, I thought were so apparent weren’t.

Rebekah [00:30:37]:

Like you being gone for long stretches of time?

Kirbi Fagan [00:30:40]:

Well, yeah, gone stretches of time or like, weight going up and down or, I know, like, being on really high prednisone for most of my life, my face becoming, you know, really round or, you know, maybe I didn’t lose all my hair, but I lost, you know.

Rebekah [00:30:58]:

Oh, people didn’t see that.

Kirbi Fagan [00:31:00]:

Right, Right. Yeah. Yeah. Because she’s still smiling. She’s still, you know, she’s still there. But I didn’t want to not do that anymore because that’s who I was. Live, adapt, defy, right? And it amazes me even, like, in extreme situations of, like, I’ve held conversations of, like, diarrhea running down my leg, pooling into my socks, and, like, people still trying to hold conversations with me while I’m trying to skedaddle. And they really didn’t notice. They really didn’t notice. And that just amazes me how that can go over people’s heads, but it does. It really does. So that what’s been really difficult for me to really believe, you know, I think in a lot more angry times, I was like, how could they not? Yeah, why don’t you see me? Yeah. But I had a much more understanding of how you can hold those dualities than those people, you know, that I was experiencing.

Rebekah [00:32:12]:

Wait, sorry. What were the dualities? What two things?

Kirbi Fagan [00:32:17]:

Me understanding that I could be, you know, be outward, be creative, be smiling, and then still dealing with that. And that was something that, you know, another person just...

Rebekah [00:32:28]:

Yes, yes, yes, yes, yes. I see what you mean. Yes. That, like, for the doctors or for whoever, the person who doesn’t notice the complexity of what’s going on, it’s like, well, she’s smiling, so thumbs up. Yes. As opposed to she’s smiling, and she could be in a moment of acute suffering. Yeah.

So as you’re talking, I’m thinking, wow, this might be a very annoying thing to say, so feel free to tell me if it is. I feel like I’m relating to you a lot as someone who has the most quintessential cliche symbol of disability sitting in a wheelchair. There’s cartoon images of me on the parking spaces. So, like, I am the most visible. And yet I also really resonate with this thing you’re saying about the smile, for sure. And also these parts of my experience that are also invisible. So, like, the thing I was thinking of when you were talking about the diarrhea is like, I have literally been presenting on zoom calls where I wet my pants, like, horribly. And I’m sitting there, like, very aware of this, and I am like, there’s literally a puddle on the ground underneath me. And I’m gonna finish this talk, and then as soon as we get off, I am, like, in the bathtub, you know? Like the exact same same thing. And it is interesting to me how we exist on the opposite edges of this binary. Visible, invisible. But then to have a moment that feels so similar.

Kirbi Fagan [00:33:58]:

That’s amazing.

Rebekah [00:33:59]:

It’s noteworthy to me. That is an interesting piece of this conversation. The other thing I’m thinking about is my husband, Micah, who did not have a childhood similarly to ours at all, but had colorectal cancer in his early 30s, and it totally transformed his body and witnessing the kinds of things he has to negotiate or, like, it’s sort of like - I don’t know if we call it blessing, curse, or what it is - but this ability to hide something and how complicated that is, like, how tricky that setup is. And so I guess both of those things, the overlaps that I see, and also this piece about the ability to hide something makes me wonder how you think about, like, what are the important distinctions? How do we think about the differences between these two things? So what might be useful about making a distinction between them? And what do you see as the limitation or, you know, like, the loss that we get when we create a distinction between them?

Kirbi Fagan [00:35:09]:

Yeah. And I’m not surprised that we can relate the way that we can as the scrappy folks that we are. But I also would say, and I would be curious to ask you, even, you know. I sometimes fight for, you know, the things that I can’t do. Right? I have to inform people what I can’t do. And I wonder if the assumption in your life is that you can’t do something. Right? So it’s like - Kirby, lift all these boxes. Can you help us with this or that? No. And then it’s like - Oh, but Rebekah couldn’t do that. Right? You know, but maybe you could. Right? Or, you know, whatever the task is. And I just think that is also that invisible part, you know, that you’re talking about with the most apparent.

Rebekah [00:36:09]:

Yeah. It’s the battle to be believed. Believe me when I say I can do this. Believe me when I say I can’t. Opposite sides of the same piece a little bit. But then, yeah, it’s interesting that I feel much more wobbly. So, for example, like, in a workplace setting, it’s not difficult at all to say, like, well, I need a ramp there, or, like, you know, like, I need a ramp up to the stage. That’s obvious. I’m not gonna even hesitate to ask for that, because we all know that. But, like, I remember when I was teaching high school, it took me a year before I got up the nerve to ask for my schedule to be arranged with enough time for me to use the bathroom that I needed to. So there are these ways in which part of my experience feels distinctly opposite from yours, and part of it feels distinctly the same. Um, so I guess maybe what we’re circling around is just that call for not making assumptions about each other in any direction.

Kirbi Fagan [00:37:14]:

Right, right. And going back, I guess, to those words, apparent, non apparent. You know, how it both acknowledges, but then doesn’t acknowledge it at all for either side. You know?

Rebekah [00:37:32]:

Yes, it is this like blunt instrument. It’s like a one dimensional glance at what’s happening, and then there’s all these other things behind it.

Kirbi Fagan [00:37:42]:

Yeah. I’m picturing myself, you know, justifying to someone, you know, well, it’s invisible. A lot more is going on. You just can’t see it. My insides are bleeding, but you can’t see it, you know, but does that really help anyone accept it more? You know, by saying that is that maybe serving outside of the scrappy community to try to get that understanding that more is going on and are people really in tune that there’s more going on with those who have physical disabilities. Right? That’s really interesting to me about, you know, who we’re serving and how to remain dignified through it all. Yeah. You know, because I think that really stops us from asking for the things that we need because of the humiliation involved and the, you know, the detail that sometimes people will back themselves into and be like, no, you are really just gonna leave it as I need a sink in the stall. Like, you know, I’m gonna leave it at that.

Rebekah [00:39:06]:

Yes. Just please trust me. I would not say this if it was not necessary. Yeah, it’s interesting. It’s making me think about language and boxes more generally too. Like the way that we use these boxes and these categories of people as a way of understanding each other. And also sometimes it does the exact opposite. It’s like an attempt to be seen. And sometimes it limits the ability for one to see. It’s weird how both of those things happen simultaneously.

Kirbi Fagan [00:39:39]:

And yet, of course it’s that way. Right?

Rebekah [00:39:45]:

I am loving hearing about your voice as an artist and the choices that you’re making. There’s a lot of whimsy woven into these pages, and we have all different kinds of stars and planets and clouds, and you already mentioned the quilts a little bit, the hot air balloons maybe. Like, what is this? As your artist brain is thinking over how to illustrate this book, what can you tell us about some of those motifs running through the pages?

Kirbi Fagan [00:40:16]:

Yes. So, you know, the starry theme was just apparent obviously through the poem, and I just loved that. So I’m like, you know, the cliche reach for the stars, you know, I just like, just ate it all. And some of my first sketches that weren’t really shared at all. You know, sometimes I take something to kind of the extreme. And then I’m like, okay, reel it back in, Kirbs.

Rebekah [00:40:44]:

Relatable. As a writer. Yeah.

Kirbi Fagan [00:40:48]:

And I was drawing these kids, like, if you could imagine they were in space and they all had windows that they were peering out of and kind of looking into other people’s windows. And it was a very abstract idea of them floating in space, like, peering out of the windows of their experiences. And then some of the kids were, you know, climbing or going up. And then I think it’s also this symbol of their own ways of climbing. Right? Their own ways of growing and going to their next level and how it looks so differently for other people.

Rebekah [00:41:38]:

Oh, man. You know what is so interesting? Hearing you describe that. The illustration I have often - in trying to describe what it felt like to me as a child - I’ve often talked about feeling like an alien bobbing around through outer space, looking down at planet Earth. Like, I’m up here as someone that people on planet Earth are looking up at and maybe gawking at or marveling over, but there’s this, like, great distance. And what is so interesting to me about the image you created is looking around in outer space and being like, we’re together out here. Like, we’re all out here. And I can see you and you and you. And I’m actually not alone floating out in this outer space.

Kirbi Fagan [00:42:15]:

Yes.

Rebekah [00:42:16]:

I’m actually in good company out here.

Kirbi Fagan [00:42:20]:

Do you think that when you were young, did you accept that you were, like, not the only one? Because I was very, like, I’ll admit, like, no way. No, you don’t get it. You know what I mean?

Rebekah [00:42:33]:

You felt like the only one?

Kirbi Fagan [00:42:35]:

Yeah, because I just wasn’t seeing it, you know, which is kind of ironic because I was complaining about it being so invisible. So why couldn’t somebody else have been invisible too? So kind of, you know, beautiful growth there.

Rebekah [00:42:52]:

Oh. I felt entirely alone in. I wonder if we’re flipped or similar in this way. So feeling like I am the only alien in outer space. So my coping with that was to really put in all of my effort to match other people so that I could pretend like it was very important. I couldn’t be the only one that was different. And so I needed to be the same and sort of cover all the cracks that were the gaping distance between me and others and sort of pretend those weren’t real. And then reinforce all the ways that I was the same as my siblings and my friends. So is that similar? I’m seeing your head nod.

Kirbi Fagan [00:43:36]:

Yeah, definitely. And I think it blew up in my face over and over and over again. Right? Like trying to adapt, trying to fit in, trying to not be this thing that was growing and overpowering me. And then eventually it gets to the point where that smile is going to fall, that, you know, that is not going to happen and I’m going to disappear and people aren’t going to know why and they’re not going to follow up and, you know, we’re not going to be friends anymore. And you know, those things happen and it couldn’t be maintained. But it was still a real part of me, too. It was still me there and before.

Rebekah [00:44:23]:

That makes me wonder. You feel like the only one. You’re doing what you can to match, but you’re not able to maintain it. I am curious what both of us would have done with this book when we were little. And just to kick us off. I am not sure what I would have done with this book because of what we were just talking about. Like this great investment to match and be the same as my friends and siblings who were all non disabled, like, for the most part, at least in the way that I understood that. So I don’t know what I would have done. And I wonder if I would have been like, oh, that’s not for me.

Kirbi Fagan [00:45:02]:

Yeah, this is like, it really made me laugh trying to think about what I would be like. Especially because, you know, I was erratic in my emotions. I think about, like in middle school, my doctors really wanted me to go to a camp that could accommodate kids with complex medical issues. And I was like, no way ever. Never.

Rebekah [00:45:31]:

I’m laughing because I relate. Yes, yes, yes.

Kirbi Fagan [00:45:35]:

I was like. I think I remember specifically telling my mom. I’m like, that sounds like a pity party. And I am not going.

Rebekah [00:45:44]:

A pity party. How interesting that that’s what your brain imagined.

Kirbi Fagan [00:45:49]:

I know. And so, I mean, doctors brought it up every year, every year, over and over. You got to go to this camp. And when I was in college, a doctor approached me and was like, you know, we have openings for a counselor position. Would you be interested in going to camp as a counselor? And I was like, oh, well, maybe I could, you know. Do something like that.

Rebekah [00:46:24]:

Why do you think that felt better to you?

Kirbi Fagan [00:46:26]:

You know, I think it goes back to just struggling with authority, probably - just struggling with adults being in control of my body.

Rebekah [00:46:35]:

Yes. And telling you how to feel about it.

Kirbi Fagan [00:46:38]:

Yeah. And, you know, not really my choice about, you know - this treatment’s gonna happen, and you can go willingly or you can go strapped down. You know what I mean? It’s like I didn’t really understand that then. You know what I mean? And so when I went to the camp, I had the time of my life. I had the time of my life. And, you know, the first thing we did was, like, we got down to the beach and everybody stripped down, and we all had the same scars. And, you know, I mean, it was just. It was incredible. And I loved it, and I made friends for life, and, I mean, I just felt so embraced. And so I think for the first time, like, I really am not alone. Like, these stories are so similar to mine and are just as complicated and confusing as mine, you know. I think a lot of, like, I’m sure you’ve heard of, like, twinning syndrome, where if you have one condition, you get another condition, and, you know, these things. And that was very true for me, too. And that was true of them, too. And so I was like, wow. And we knew some of the same doctors, and, you know, I mean, it was just absolutely incredible.

And so when I think about how I would have accepted the book, I think it would have been that same way of, like, major resistance. And then to look a little closer and to see, you know, the page that shows an ostomy and, like, this idea of her going through these different moments in life and showing her in front of the lake with an inner tube. And I think it’s a lot of questions, like - Can she go in the water? Can she get wet? Right? That’s like, such an assumption and a question, you know, that people have. And I think seeing that might have changed my mind as a kid, you know, I think that might have cracked me open a little bit.

Rebekah [00:49:00]:

Since the earliest sketches, for anyone listening, I was just holding that page up for Kirbi so we could witness it together. Since your first sketches of this page, this has been one of my favorites.

Kirbi Fagan [00:49:12]:

I love it so much.

Rebekah [00:49:14]:

The joy and connection between these two characters on this page and just the, like, freedom. They’re just, like, arms out, just, like, at peace, enjoying this glittering water with these frogs jumping around.

Kirbi Fagan [00:49:29]:

And they’re safe, right? They’re safe with one another.

Rebekah [00:49:33]:

They’re safe, yes. I’m thinking. I’ve thought so much about how much time you spent with these drawings and these characters and these themes, and as someone who has lived this long story that is still unfolding, I’m curious if there was anything that you learned about yourself or you a different, new little glint of part of your own story or something that shifted or became more apparent to you through this prolonged attention to these characters and these stories that you were bringing to life on the page.

Kirbi Fagan [00:50:11]:

Yeah. You know, this idea of feeling alone. Right? And feeling isolated. Even though I’ve come a long way with it, it’s still in me. It’s still there. Right? And a lot of times when I sketch, I act things out. And so I really was putting myself in the shoes of other people and just realizing, like, oh, my gosh, that’s so similar. Oh, my gosh. And I thought my lens was pretty big going into it. I really felt right for this story. I don’t know how you guys found me, because it’s not that out there online, but I just felt so right for it, and I wanted to prove I was right to it - to you, mostly. I wanted you to really believe me, too. But I think my lens has just exploded, and I had a lot more confidence about approaching people that I might not approach because I didn’t feel like I would be welcomed into that community.

And I know during the process of this book, my high school has a wall that is a sculpture that is dedicated to a polio survivor. And they ended up doing an honor for students who have faced immense challenges. And so they carved my name into the sculpture during the process of this book, which was really, really special and especially for, you know, school that was, you know, just - I really struggled in school. I graduated by the skin of my teeth. And to be acknowledged like that now, to be at the bottom of the bottom at school, and then now my name’s carved in stone there, you know, was so special. And I got to meet some of the other people who were also honored, and their conditions were very different from mine. And for the first time, I felt like I’m one of them, too. Even though their disabilities were more apparent and to, like, sit down and touch their hands and, like, connect. That was just something really unexpected that, you know, came out of it. And I think that you’ve encouraged me. And as I balance, like, privacy and like, wanting to be who I am, but also, you know, maintain dignity, I just -I’m brave. I feel braver about talking about it out loud. So I thank you for that. And even going into future projects of, like, yeah, I can talk about this more. I can give people a chance to believe my story.

Rebekah [00:53:36]:

Wow. Wow. Oh, I’m feeling that in my chest that all of the reasons why you would have to be protective of it and for legitimate reasons.

Kirbi Fagan [00:53:47]:

Yeah, and I think sometimes, you know, before scrappy ones, I would feel like I need to disclose more to be seen. And now I’m like, I just have this new comfortability with myself, like, being comfortable with being misunderstood in a new way is a new piece that is just growing after this book.

Rebekah [00:54:15]:

Kirbi, I really love the way that you’ve modeled that for me today. I’ve gotten so much out of hearing you reflect on your story in the way that you’ve reflected on it and the way that you reflected on making this book. I feel like having this conversation with you has made me feel quite emotional many times. I’m so glad I got to talk with you today.

Kirbi Fagan [00:54:41]:

Me too. Me too. I think it was just, like, a long time coming.

Rebekah [00:54:45]:

Yeah. Especially with these, like, just these kids - little Kirbi, little Rebekah in mind. I hope that this was just the beginning of many more conversations we’re going to have.

Kirbi Fagan [00:54:56]:

Oh, I would love that. I would love that.

Rebekah [00:54:59]:

Thank you.

One long pink swipe made by Rebekah’s son with paint.

Thank you for listening! If you finished this conversation wanting more Scrappy Ones behind-the-scenes, here are a few spots on the internet where you might find some interesting backstory –

• I’ve written a little bit about it toward the end of this substack essay.

• I share a 2,200 character version of the backstory on this Instagram post.

• I did this Q&A with my publisher about the making of the book.

• You could also check out the interviews I did with Roger Sutton and Mathangi Subramania. I really loved both of these conversations!

Two horizontal marks crossing each other made by Rebekah and her son with green and orange marker.

CHEWY QUESTIONS – If you want to continue to think through the ideas here, these questions are for you – please feel free to explore this in your personal writing, to talk about it with your people, or to join the conversation on Substack.

1. What comes up for you when you hear the word “scrappy”? Is it a word you relate to? What draws you toward it, and/or where does it snag?

2. What do you make of the words/categories of “apparent”/“non-apparent” or “visible”/”invisibe” disabilities? When do you find them useful/limiting?

3. Were there any picture books you had growing up that made you feel really seen? Have you found any as an adult? What was it about this book that you connected with more than most?

A photo of the book We Are the Scrappy Ones opened to its dedication page. Beneath a cluster of drawn stars, the words “To the scrappy misfits who feel like the only one. You are not alone. – R.T.” And just below, the words, “To Bob Truding and Jo Salem, for giving this scrappy kid their all. – K.F.” Photo by Kirbi Fagan.

Thank you, as always, for being here.

xo

Rebekah