Spoonie Authors Podcast Episode 15: Disability in YA and Children’s Lit with Karol Ruth Silverstein

Don’t like the podcast format? You can also watch this interview as a YouTube video! Closed captions are available on the video.


Dianna: Hello, and welcome to the Spoonie Author’s Podcast: a podcast that explores different disabled author’s stories each week. I am your host, Dianna Gunn, and joining us today is Karol Ruth Silverstein. Karol Ruth Silverstein writes all genres of children’s literature and screenplays. She currently serves on the board of SCBWI Los Angeles, and is a member of the Writer’s Guild of America West. Her debut YA novel, Cursed was published in June of 2019 by Charlesbridge Teen, and has won the Schneider Award as of 2020. Hello, Karol!

Karol: Hi! Thank you so much for having me on the podcast. 

Dianna: Thank you for joining us! I’m really excited to chat with you and learn more about your work. Let’s start with you telling us a bit more about your novel Cursed. 

Karol: Sure! Um – the sort of really quick and short way that I describe the book is that it’s about 14 year old Ricky Bloom who has recently been diagnosed with a painful chronic illness, and is seriously pissed off about it. 

Dianna: *chuckles*

Karol: Um – that sort of gives you the general feel of the book. Um – and what’s happening is, when the books start, is she’s skipping weeks of school. She tried to go to this school near her father’s house which her parents decided would be easier for her. But it’s really painful for her to get there, and there’s bullies and mean girls, and it was just miserable. And she realized her father left for his office before she needed to leave for school, so she’s been going through this charade of pretending she’s getting ready for school, and then when he leaves just going back to bed, resting her body, dreaming about the boy she has a crush on at school, and just pretending it’s all not happening to her. And early on in the story, her truancy is discovered, and she’s forced to go back to this miserable school and catch up on all the work she has missed so she can graduate 9th grade (which is a horror worse than death). And she has a particular teacher – most of her teachers are pretty nice, but one teacher seems dead set on making her life more miserable than it already is, and she needs to meet with him three days a week after school, the best she can hope for is a D, and she just becomes determined to prove him wrong. So the book is really her journal – journey of going back to school and making sure she passes 9th grade. It’s also a story about moving towards acceptance of – um – being chronically ill, having a painful chronic illness for which there is no cure, and who she is going to be, how she’s going to have a big beautiful life despite this. 

Dianna: That all sounds amazing. And let me say: three days a week after school sounds awful. *laughs* Um, I definitely identify a lot with her because I had a pretty awful experience with my first high school, and actually ended up going to three different high schools. Um, so what was the most exciting part of working on this book? 

Karol: Well, you know, I have to say that working with my editor was really exciting. First it was exciting because someone at a publisher said “Yes, we like this, we think this is a good book that we want to put on shelves with our name on it, we think it could find an audience. ” I didn’t think that was ever going to be the case. So that was really exciting. And I love revising. I hate first drafts. So revising is just a pleasure for me. Give me a big, juicy, editorial letter and let me dig in, try to check off all the to do list items, and get the prose as tight as I can. I was a little afraid as a first time author, like what’s it going to be like, am I going to meet deadlines, and stuff like that. But I really did enjoy the back and forth with my editor. Um, I warned her that I was like a big revision crazy person. In fact –  I did one really major overhaul, and then several smaller draft revisions. And then after it went to proofreading – so it had been to copyediting, it had gone to the beta readers, it was proofreading – she said “okay, last call, for changes!” And I was like okay, and I went through it, and I sent her a ten page word document of slight changes that I wanted, and I was like “Oh my God, she’s going to kill me”, but she was a trooper. My editor is Monica Perez at Charlesbridge Teen. We just went through and she changed everything that I wanted, except for when there was issues with formatting.

I learned the terms widows and orphans: so when you’re laying out a book on the page, sometimes a paragraph ends with one word and they want to get rid of that uneven spacing, so there was some places where – uh – the proofreader had changed something slightly so it looked better on the page, and I wasn’t crazy about what they changed it to, so I would propose something new. And she would take that, unless it would mess up the formatting again, there was a lot of “Well this won’t work, how about this?” She really worked with  me on it to get as many of the fixes that I wanted in there. It was really just about smoothing out little things.  And I was so appreciative of her willingness to, you know, work with my ridiculous revising. It was really great. It was a great experience. So that was really fun. Um – and working on the book flap material, I had a big hand in that. She said they were open to ideas, and I said “How about this?” and getting to see the cover art and stuff like that. That was all really, really exciting. 

Dianna: That’s amazing! I’m so glad, it seems like you really had a phenomenal experience with your editor. And I’ve definitely heard some stories, some horror stories specifically out of traditional publishing, so I know that’s not always the case. But it sounds like you got really really lucky. 

Karol: I did get lucky! And you know, I’m with a smaller press. So one of the downsides is not as much money for marketing. I didn’t have a dedicated publicist, I had to market myself. But on the other hand, I think with a smaller publisher the editor is more hands on and, you know, they only choose a few books and are really passionate about the books. So I think – um – everyone at Charlesbridge was passionate about making my book the best it could be and having it be as successful as possible, partially because they didn’t have a slate of 20 books coming out that year. 

Dianna: Yeah, I would definitely in my experience with smaller presses it’s been very phenomenal. The teams are very close knit and really, really deeply passionate about the books that they choose. 

Karol: Yep! 

Dianna: Alright, so moving on. Um – you focus primarily on literature and content for kids. Young adult stuff, middle grade stuff, and you said you’ve even written some picture books? 

Karol: I have! 

Dianna: Tell us a little bit more about this picture book thing. 

Karol: Um – well I – I really love writing picture books, I would love to publish one. My agent and I were out on submission with a picture book, we got a deal on one, and a year after they made the offer it fell through. So that was disappointing, but probably a blessing in disguise. I just, I love writing picture books. Almost all of my picture books involve cats, I’ll be honest about that. *laughs* Um – it’s a really special art, and it’s something that you really have to learn. It’s deceptively difficult. Um – and I would say it’s much closer to poetry than short story writing. And I have had – um – I seem to have had, you know, an innate skill with rhythm and writing short poetic things like that. I think I have – um – that ear for picture book. It’s very very difficult to sell them because they are expensive to produce because of all the art. So it’s always a long shot, but hope springs eternal that we will get one sold. The idea of a parent snuggling up with a child, sharing this intimate moment, reading something I wrote, is just mind boggling to me. I would love love love for that to be a part of my professional life. So fingers crossed on that. And meanwhile I have a couple of middle grade books in progress, and just the very early beginnings of a new YA. You know I write screenplays, I juggle a lot of balls, and the downside of that I don’t focus on one project until it’s done and get it done quickly. I’m more of a slow meanderer. 

Dianna: Completely fair. I used to be much the same way. I’ve really dug in my heels to work on a series right now so I’m less that way, but I’m always doing nonfiction stuff, I do nonfiction for my actual day job and I also do workbooks for authors. So I have some idea of what it’s like to balance many different balls at once. Um – so why – so we talked a little about why you’re drawn to these stories. Why do you think it is really important to have disability rep in stories for these age groups in books like Cursed

Karol: Well I think – um – having representation of various underrepresented groups is just a great thing. And I think our – the children’s book industry really started thinking about that, and speaking about that, and encouraging diverse writers about a decade ago. And I think that maybe the children’s book industry is doing better than the adult book industry, and certainly better than television and films. But, yanno, they’re catching up. The idea that – um – some kid who is in an underrepresented group, whether it’s racially or culturally or a disability or what have you, the fact that a kid can open up a book and see or read about a character who looks like him, worships like him, moves like him, it means a lot in terms of a kid getting comfortable in his or her skin and feeling like she has a place on the planet. Um – for – in my own experience, when I got diagnosed at 13 (Cursed is a work of fiction but it very much draws on my experience of getting sick as a 13 year old) I felt so soul crushingly alone, and the closest I got to representation in children’s books was a Judy Blume character who had to wear a back brace.  Um – and since I was born when dinosaurs roamed the Earth, there was no internet.

I actually didn’t meet another young person with arthritis until I was 21. So for that entire stretch of 13 – 21 I just felt completely alone. I just didn’t – it was misunderstood! I have arthritis! People didn’t know then, and they hardly know now, that children get arthritis too. Um, and I just felt horribly alone. I felt different and I felt uncomfortable taking up space on the planet. I wanted to hide my illness. I didn’t want people to know. Um, and I think if I had a book like Cursed or even one of the other wonderful books out now with different types of disability and neurodiversity and stuff like that, then I would have seen that there are all kinds of people, and I have a place here. So in particular for children’s books, I think it’s really important. 

Dianna: I can only imagine how difficult that is, it’s hard enough being 13 *laughs* *overlapping voices* 

Karol: Yeah, being 13 is just so difficult. Actually, my character was originally 13. I love the parallels of how your body is changing at 13, like her body is changing in the traditional ways that a girl’s body changes, but also in this other horrendous way. I thought it was a good analogy of, you know, that it would be relatable. But my editor, the condition of the offer was that I age her up to 14, which I was certainly willing to do, and actually doing that brought along some beautiful things in the narrative and the overall tone and theme of the book. So I’m really grateful that they wanted that, just to put it more squarely in YA. But she was originally 13, which is just the most miserable age.  

Dianna: It really is. *laughs* I am so, so sorry to anyone who is living through that right now. It will at least get somewhat better. 

Karol: I don’t know if you’ve read Operating Instructions by Anne Lamott, it’s a memoir about her decision to become a mom and have kids, and she talks about how one of her biggest hesitations about bringing a child into the world is that he or she will have to endure junior high. *laughs* I was like amen sister, I get it.

Dianna: *laughs* Yes, absolutely, I am 100% with her there. *laughs* Honestly, I don’t know anyone who enjoyed that time period of their life. I’m sure there are people out there, but I personally don’t know any of them. 

Karol: Yeah. I think most of the misfits and artists and oddballs (and I fit into that category) probably didn’t have the best time in 7th and 8th grade. 

Dianna: Yeah. I will say: in 7th and 8th grade I did have a phenomenal art teacher. He was one of those teachers who had been teaching at the same school for 20 years. He had stories about the history of the school, we would all be drawing and he would ramble sometimes in class telling us some story about something that happened at the school ten years ago. But the rest of it…we don’t talk about the rest of it. 

Karol: I had a really interesting geography teacher in 7th grade. His name was Leonard Bratsfer. If you’re out there Mr. Bratsfer, know that I remember you. Saturday Night Live was newly on the air, and he used to have his students make up skits. The only rule was that they had to have whatever information you were assigned for the country we were studying, whether it was lakes and mountains, imports and exports. You could have this crazy skit and then have someone walk in and say “By the way, the imports in Portugal are blah blah blah” . That whole year was so dark and miserable, but I loved doing that. And then I became a screenwriter. So, go figure. Thank you, Mr. Bratsfer. 

Dianna: Yeah! And kudos to anyone who teaches kids that age. Man – 

Karol: Oh, yeah! 

Dianna: You have to relive it by proxy every day! It doesn’t sound like an enviable job. 

Karol: Yes. 

Dianna:*laughs* Anyway, let’s reel this back in and get back to the topic at hand. Although I must say, you have a lovely voice. I could quite easily listen to you talk for an extended period of time 

Karol: Oh my goodness, thank you! Thank you, thank you! 

Dianna: So, back to the topic at hand: how would you like to see disability representation, not just in stories for young people but in general, change in the next 5-10 years? 

Karol: First, I’d like to see more and more and more of it. And I think we’re making great progress in those areas. Even in film and television, with so many streaming services there is such a need for content that there are more opportunities for stories by and about disabled people. Which is awesome. I would love to see more own voices disability stories. And for anyone that isn’t familiar with the term “own voices” it’s a hashtag that started on Twitter years ago. I think it was maybe 2013, 2015, it just means that the author or the writer is a member of the same underrepresented  group as his or her or their main character. So own voices disability would be, yanno, disabled writers writing about disabled characters, like a main character. Now whether, yanno, I as someone with rheumatoid arthritis and lots of mobility challenges, writing about, for example my middle grade has a main character who is a feline and a main humancharacter who is a wheelchair user and was paralyzed in an accident, whether that’s technically own voice (because I’m not a wheelchair user and I’m not paraplegic) that kind of gets into the nitty gritty. I don’t really – I’m not gonna weigh in that argument. I would just love to see more own voices disability, because some of the disability stories told by non disabled people tend to be through this able bodied gaze. There are certain tropes that are associated with it that you can just see coming from a mile away. It’s unfortunate that there’s a certain idea that able bodied writers have of what disabled people want, that they have this fantasy of being able bodied.

There’s a number of little tropes that are just like “ugh, here it comes again!” That said, there are some authors who do amazing research and get beta readers and really make sure they’re as authentic as possible. I do believe that that is possible. There’s some people that think you should never write outside of your experience or wheelhouse. I’m not gonna weigh in on that argument. I will say: I’ve read a couple books this year  – or that came out last year –  from my debut group that had disabled main characters written by non disabled authors that felt pretty dang authentic to me and were really good books. So just like more disability stories and more disability stories written by disabled characters would be awesome. 

Dianna: Absolutely! Are there any existing stories with really good disability rep that you’d like to shout out? Tell us more about these stories in your debut group. 

Karol: Yeah! There were a number of middle grade books that had characters that would fall under the neurodiversity umbrella, like Nina Meets Her Match  which is about a young girl who is diagnosed with epilepsy. There were a number that I can’t think of off the top of my head. I think Carla Mantec is the author of Nina, I hope I’m getting her name right. I should have had that up and available. One specifically (and I joke with this author that she’s going to need an internet restraining order against me because I can’t stop talking about her book, and she laughs and says “Yeah, that’s not a problem for me”) there’s this YA fantasy called We Rule The Night written by Claire Bartlett. I am not a big fantasy reader, I’m more of a contemporary/realistic girl, but I read this because I knew it had disability rep, and I couldn’t put it down! I couldn’t stop flipping pages on my Kindle.

I sort of describe it as like a steampunk 1984 meets a war story. It has dual protagonists, one of whom is a double amputee and the other is a girl who pretends/hides that she’s a girl while she is fighting in this endless war. It’s very 1984 with this endless war and you don’t know which side is the good side. But they are brought together for this special regime of all women who are going to learn to fly fighter jets and be a part of the war effort. And there’s these two different kinds of magic and just amazing world building in this book. It’s such a thriller and it’s so riveting. But the disability rep is amazing. This character who is a double amputee, she just really nails it. She gets people making assumptions about what she can and can’t do. I just really recommend it, not just for the disability rep, but it’s also just a really amazing book. 

Dianna: Sounds incredible! And I am a huge fantasy reader, so I will be checking that out. 

Karol: Yeah! Yes. Especially if you’re a fantasy reader. 

Dianna: I will say that in fantasy, disability rep is really problematic a lot of the time. Or particularly nonexistent. But we are interviewing you here and not me, so. *laughs* 

Karol: I did want to – I know we’re probably getting to the end of our time, you had asked me about what inspired me to write Cursed and I would love to just address that briefly before we run out of time if that’s okay. 

Dianna: Absolutely! 

Karol: The really short version of it is: I had a screenwriting mentor back in the 90s, Holly Goldberg Sloan, who was a writer/director at the time, and now she’s a young adult/children’s author. Great books like Counting By Seven and I’ll Be There and To Night Owl from Dog Fish is her most recent middle grade book. A really great writer. But we were getting to know each other in her capacity as my screenwriting mentor, and she asked me about my life, I told her about getting sick and she said “Wow, that’s really fascinating. You ought to  write about that”. And the spoiler alert is: I didn’t want to. I didn’t want to be a disabled writer who writes about disability, which is pretty funny because now I’m like “Yeah!!! I’m a disabled writer who writes about disability!” But I also wasn’t sure about how to do it in an authentic manner, because most of what I had seen was all the heroic disabled person who rallies everyone around them. And that, as you can tell from my description of my book, was not who I was. I was this pissed off, angry, self absorbed, very typical teen who had this incredible thing happen to her. And so I sort of kept it percolating on my backburner, trying to find a way into the story that would enable me to write it in an authentic manner.

And then years later I was doing a writing exercise in a workshop and out she came and there she was, just demanding to have her story written! So it took me a long time. And I just want to say if there’s someone out there who’s a writer who really wants to write a story but doesn’t know quite how to begin: let it percolate, because your mind will probably lead you there eventually. And that’s why I really wanted to write that book, to write it in an authentic way because I know there are pissed off teenagers like me who don’t want a hero’s journey of how inspiring this poor sick kid is and rally the family. It just wasn’t my experience. And I was sure there were others whose experiences were similar to mine, rather than the heroic one. So I wanted to just get that in there.

Dianna: Absolutely! That is a really great message. I think there is a huge pressure on us as creatives to produce quickly and constantly, and it makes a lot of writers rush into stories that they aren’t ready for. I absolutely did this. I started writing a book about an immortal character who had lived for thousands of years when I was like 14, which is not – you just don’t have the life experience to actually make a perspective like that remotely believable. Sometimes you just gotta let some things sit before you can make the story you’re meant to. And I think that’s a really important thing for people to know. So thank you for sharing that. 

Karol: You are more than welcome!

Dianna: We are coming up to our time so for our final question: where can people find out more about you and about your work? 

Karol: Well I do have a website that really needs some improvements. It’s really rudimentary, but it does give you some info on me and my book. It’s karolruthsilverstein.com Karol with a K, so k-a-r-o-lruthsilverstein.com . My book is available anywhere you buy books. You can go to Indiewire if you want to support a local independent bookstore. You can use the evil empire that comes with the two day shipping if that’s what you do. *laughs* And it is coming out in paperback October 6th. We don’t have an audiobook. Maybe down the line. But it is available in paperback on October 6th. And it’s available in Kindle and regular, and people can go check it out. I did a lot of interviews in the year leading up to the release, the links are are on my website. So if you want to learn more about me and the writing of Cursed and the inspiration and things having to do with the story, by all means check out my website. 

Dianna: Awesome! Sounds great! Thank  you so much for joining us. It has been wonderful chatting with you, and I hope you have a lovely day for the rest of your day and…yeah! 

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