Recently, I had one of the greatest honors of my life — the opportunity to speak with one of my favorite authors, Marieke Nijkamp. Marieke is a #1 New York Times bestselling author of novels, graphic novels and comics, including This Is Where It Ends, Before I Let Go, Even If We Break and The Oracle Code. They also edited the anthology Unbroken: 13 Stories Starring Disabled Teens.
Marieke spent time speaking with me on Zoom from their home in The Netherlands. We talked about some of the inspiration behind their writing — from a school bus in New Jersey to a witch’s spell found in medieval European manuscripts. They shared why inclusion of characters with disabilities is so important to them and how they were chosen to write a book with a disabled superhero for DC Comics. Marieke also gave us a glimpse into their newest book, At the End of Everything, a pandemic-themed story which will be released on January 25th, 2022 (I already pre-ordered it!). Read what Marieke has to say, below, and check out the full video of the interview on YouTube!
Daisy: Hi Marieke! Thank you so much for taking the time to meet with me. I can’t believe I am speaking with you, a #1 Best Selling Author! Not only are you working on several books, but I also read that you are dealing with long Covid. I’m so sorry. How are you feeling?
Marieke: It’s going pretty well, now but it took me a while to get to this point. I’m finally getting back to where I was in February 2020, so I feel like that’s progress. I’m a bit hesitant to say it’s going well, because I’m afraid that if I say that, I’ll jinx it. But there’s definitely progress. Though I would recommend trying to avoid catching COVID If you can, because it’s not fun!
Daisy: I’m so sorry. I hope you feel better soon, Marieke. So, I first became a fan of yours when I read This is Where it Ends. It was really amazing. What made you want to write it?
Marieke: Usually when I write books, it’s all kinds of little details and things I’m curious about and things I want to put into a book, and I just gather enough of them until I have a story. But for This is Where it Ends, it was honestly just being in the U.S. and going to lunch with a friend of mine, driving down the Interstate in New Jersey, and passing a school bus. And I live in a country that has no school buses. We are we are very true to stereotype and everyone in the Netherlands just bikes to school.
So that sort of got me and my friends talking about differences in in school culture in high school, and I couldn’t quite like can wrap my mind around things like school lunch, which is not really a thing here either. She couldn’t wrap her mind around kids biking to school for an hour or more in quite a few cases…. So that’s sort of got us talking. And obviously, one of the things we talked about is school violence, which thankfully, also isn’t really a thing here…. My friends told me about having active shooter drills growing up, or even their children going to kindergarten and having shooter drills there. So, that just stuck in my mind and made me want to at least try to understand what that would be like and how life can change basically on a minute-by-minute basis in situations like that. And that triggered me to write this story and do a lot of research and talk to a lot of people to try to get it as right as possible…. I’m really glad that it resonated with so many people.
Daisy: So, after reading This is Where It Ends I had to learn more about you, and when I read what about your work as a disability self-advocate, you became my hero. Can you tell me a little bit about your inclusion of disabled characters in your writing?
Marieke: Yeah, absolutely. So one of the reasons why it’s funny to talk about This is Where It Ends occasionally is that it’s probably the only book where I haven’t consciously included at least a main character with a disability. I mean arguably, PTSD features heavily in the book, and obviously [the character of] Matt [who has a disability] is there. But it was, on the heels of that I really started… to be a part of conversations about disability in books. And one of the reasons for that, is that I’m autistic, so I’m neurodivergent, and also physically disabled. So it obviously matters to me to see disabled characters in books.
It also took me a while to realize how rare that is. Something I’ve heard from a lot of people who talk about diversity and inclusion in books is that you need someone to tell you that it’s okay for, in my case, disabled characters to be the main characters of books, to be the heroes in books. Because growing up, I was so used to not seeing disability represented that it literally took me a while to figure out that “Oh, wait, this is something I can do” and also need to do because it’s bizarre to think that so many readers would not be used to that or would not see that part of themselves reflected. So I think around about the time that This is Where It Ends came out was also the time where, in the context of those broader conversations, I really wanted to focus more on ways in which disability could be included in fiction.
And one of the ways I did that, immediately after writing This is Where It Ends is writing Before I Let Go, which deals with disability, but it also deals with how we talk about disability. There, we talked about mental illness specifically. So it was kind of it was a book about friendship, and it’s also a bit of a commentary on the idea of…. humanizing people with mental illnesses. And then I also edited an anthology of stories featuring disabled characters called Unbroken.
Daisy: I loved the story you wrote, “The Day the Dragon Came,” in Unbroken. Do you see yourself in the main character, Alix?
Marieke: I do very much…. So when I when I was working on those short stories, I knew I wanted to write something that was different than my usual books. And the funny thing is, I always talk about this story as though it is fantasy. And in many ways, obviously, it’s not historically accurate in the sense that these characters have not existed. But that’s about the only part that’s not; it’s historically accurate for 14th Century Ghent. I lived there when I was in college for a little while. So I knew the city and I knew all the routes the characters take. And I know how the streets feel, I know how like the city itself smells and tastes like. So that was really fun to have all those very visceral experiences and be able to put them into the story. And even the magic spells that featured in the story are actually magic spells from 14th century–those aren’t made up–those are from an actual manuscripts that dates back to the Middle Ages. I don’t think they worked, then, either! But it was fun to sort of add that detail of this is how people looks at the world back then…. I have a graduate degree in history. So that was something I wanted to pursue.
Also, I wanted to write a character who uses a cane because I do a lot of the time. So that’s something that I connected with heavily. And I really just wanted to put something of myself in that story, so I think story is, in many ways, a very personal one.
Daisy: So what fascinates you about medieval times?
Marieke: Oh, I always wanted to be a knight when I grew up, and I still kind of do! I’m sorely disappointed that that’s not a thing in the way that it is in the movies! I think it’s probably reading a lot of fantasy when I grew up and, reading all those adventure stories and wanting to have a role in that too.
Books for me have always been like an escape, obviously, and just a fun way to spend time and also a way to sort of figure out how to be human. As I said, I’m autistic, so there’s a lot of things in terms of social interaction that don’t necessarily come natural to me, there’s a lot of things like connecting to other people and understanding what makes other people tick that just takes me a few steps more than it takes neurotypical people. So for me, books have always been part of that, of figuring out all the ways to be and all the ways to think and interact with other people…
Daisy: The Oracle Code is about Barbara Gordon, a DC Comics character who was originally known as Batgirl, but after having an accident resulting in paralysis, she became Oracle, a hacker heroine who uses a wheelchair. Can you tell me a little about her and how you came to write this book?
Marieke: Yeah, I got asked to write the book which is slightly surreal. Just like fantasy, I always read comics growing up, specifically European comics which are slightly different since they feature a lot of historical adventure…. DC [Comics] was working on this imprint for teenage readers, and they wanted some established authors to take on characters from the DC Universe. And they reached out to me to see if I’d be interested in writing for them in general, and specifically writing Barbara Gordon.
They knew that I talked about disability inclusion quite a bit, and Barbara has this rich history of being a disabled superhero in DC Comics, and they really wanted to bring that back, because part of the focus on that line was not just writing books for younger readers, but specifically approaching these comics in a way that reflects the world that we live in. They were really interested in having a disabled superhero, and I was obviously very interested in writing that and exploring her story. I knew going in that I wanted The Oracle Code to be about disability as much as I wanted it to be about heroism, and friendship and all those things. Because it felt like such a unique chance to explore that part of a wonderful character, and something that featured in comics, but not really all that much. And it just seemed like a really cool way for me to show to other disabled readers that everyone gets to be a superhero in their own way. And that’s pretty awesome!
And it just seemed like a really cool way for me to show to other disabled readers that everyone gets to be a superhero in their own way. And that’s pretty awesome!
Daisy: I agree, that’s awesome! So Oracle Code is a great symbol of disability empowerment, but I have read that some critics want her to be cured and resume her Batgirl identity. The Oracle Code, as well as essays that you’ve written in Uncanny Magazine and KidLit, fights against the idea of “curing” a disability or engaging in genetic engineering to remove them. Can you talk about that?
Marieke: Oh, yeah, that’s an ongoing fight and yeah, it’s one of the reasons why I hope that having more disabled main characters sort of helps combat that particular narrative, because it’s such a frustrating discussion. I’ve had that particular conversation with people who, with all the best intentions, say, “Wouldn’t it be so much better if we just cure disability?” without any sort of nuance.
Obviously, I would prefer not to live with chronic pain. I think most people would. I don’t think most people enjoy having pain or being exhausted or dealing with like, the, the harder aspects of being disabled. But I think there’s so much richness and so much variety in being disabled, and so much that it adds to our identities, so when people say, “Shouldn’t we just cure all disability?”, it kind of feels like people are saying, “Shouldn’t we just erase all of you?” And it’s hard to have that conversation.
Again, with the best of intentions, a lot of non-disabled people will politely listened to you while thinking, “Well you don’t know what it’s actually like to be non-disabled”–which people equate with being happy a lot of the time—”you can’t possibly know what it’s like, so you don’t know any better. So just listen to me.” And if you can’t get past that sense of seeing that disabled people are fully people and have their own agency and their own ideas about life and the world, we can jump up and down and scream and do whatever we want to do, but some people will just never hear it. And to some degree, there’s always going to be a small percentage of people who won’t listen anyway.
But I think there’s a large percentage of people who just either don’t quite understand what it is to be disabled or have never really felt like they’ve interacted with disability–even though that’s statistically unlikely, given how many people are disabled. I think most people will see it as “Well, that’s just my friend X or Y and they’re not actually disabled. They just have arthritis, or they’re depressed but they’re not actually disabled, because they’re my friends.” And I think it helps to have inclusion in books and the media to combat the idea that humanity and disability are two different things. And that if that friend has arthritis, or a chronic illness or a mental illness, or is neurodiverse, that doesn’t change anything about who they are, but it does impact who they are. And it does influence how disabled people interact with the world.
I think it helps to have inclusion in books and the media to combat the idea that humanity and disability are two different things.
I’m just sort of hoping that seeing disability in all its different shapes and varieties will help people understand that this is who we are, and we don’t need to be cured. We need to be able to interact with the world and we need to be able to have the world be made for us too instead of being created to exclude us. And if we have all of those discussions about rights and about justice, about accessibility and about common humanity, I think those are far more important than having discussions about cures.
And that doesn’t mean that we shouldn’t be trying to cure things like chronic illness or chronic pain or terminal illnesses, or in this case, COVID. Let’s definitely cure COVID If we can; let’s definitely try to work on things like vaccines for HIV and malaria and all kinds of life-threatening illnesses. But let’s not forget to see who’s on the other side, let’s not let’s not ignore what people with disabilities have to say from lived experience. And let’s instead try to find ways in which we can all equally live in the world. I think that may be a really good first step.
Daisy: So in several of the stories in Unbroken, there were characters who treated people with disabilities poorly. What would you say to kids with disabilities who sometimes encounter mistreatment?
Marieke: For kids with disabilities, who deal with mistreatment or ableism in many forms, I first of all say it’s not your fault. In a weird kind of way this isn’t about you, it’s about people on the other side being ignorant and letting that ignorance fuel the choices they make.
I’d also I’d like to say that there are lots of people out there who also are disabled who do amazing things and live life to the fullest in whatever way that means to them. And if people refuse to acknowledge that, then that is a choice and a bad one, but it says something about people on the other side and does not say anything about disabled teens or disabled kids dealing with that. They deserve better, they should not have to deal with it.
I just had this conversation about a younger person dealing with some horrible ableism and it really does sadden me to know that we can argue against it, we can fight against it, but it’s something that we can’t seem to eradicate. I and so many people like me and so many fantastic disability advocates will definitely continue to try to do so, and continue to try to educate people and help them see that disabled people are people and deserve to be treated with respect and with love and with compassion, like anyone else. I think so many people will be trying to fight for disability justice and equal rights.
And that doesn’t mean that dealing with mistreatment is any less horrendous, because it hurts and it’s just a really horrible situation. And if it happens often enough, it’s really hard to not start questioning your own value and your own sense of self. But I think it’s important to hold true to who you are, and recognize that any form of discrimination comes from ignorance, and it comes from systematic problems. Sometimes it’s just plain, people being awful. But again, that’s a small percentage of people whose minds are very hard to change. And I just try to understand where that comes from. But I think in most cases, with education, and with good role models, and with fighting for inclusion that a lot of people can learn to do better. And more than that, there are a lot of people out there who already do better. And there’s a wonderful thriving disability community, online and in many communities and finding those people to stand by your side and finding strength in each other is what will help us deal with the struggle.
For kids with disabilities, who deal with mistreatment or ableism in many forms, I first of all say it’s not your fault. In a weird kind of way this isn’t about you, it’s about people on the other side being ignorant and letting that ignorance fuel the choices they make.
Daisy: So you’re a person with a disability who is a New York Times bestselling author, and definitely a role model to so many kids, including me. You work through the pain you feel every day, and now you work through the symptoms of long COVID. So how, how do you do that?
Marieke: Well, some days it’s easier than others. I think for me, it’s a combination of doing what I love and being in a very lucky position that I’m able to do so. And reminding myself that pretty much every day, I get to work on amazing stories and amazing books. And I’m incredibly lucky that that’s what my day-to-day life looks like these days. And it also it just means so much to me to hear from disabled readers and know how much books with good representation resonate and to hear from disabled authors who are publishing their books, because so much has changed over the last couple of years and seeing the growth and seeing the bigger space at the table for disabled people and disabled authors, that definitely helps keep me going.
I am in love with the stories I write which is again, a really lucky position to be in. And that helps keep me going. There’s also part of me that, I do things out of spite when people tell me “You cannot possibly do X or Y,” I will go out of my way to prove them wrong, which is not always a healthy way to go about decision-making, but it is a good way to keep going when it feels like it’s too hard. There are definitely people who told me that disabled characters aren’t interesting to readers. And I will keep that in mind and just make my characters talk about disability a little more just because I find delight in that! So that helps. But I find that if the world is intent on putting you down, it’s all the more important to just stand tall and face it. So that helps.
But one of the main things that also helps is just having an amazing group of people—friends, family, people who support me, people who I can vent to if things are hard. Also people who remind me that it’s okay for things to be hard, it’s okay for there to be days when I should be resting, when I should be taking a step back. It’s okay to have a different way, it’s okay to find ways to make it accessible to yourself. And that’s not a weakness in me, by any means. It’s probably a strength to find the best way for you to do what you love.
Daisy: So I know that you have a voice in the LGBTQ+ community. Would you like to share anything about that, especially for our readers who identify with the community?
Marieke: Initially, my experiences with advocacy were specifically queer advocacy, as someone who went through figuring out which labels fit me best. And these days, I am most comfortable with queer and non-binary. And that took me a little while too because for the longest time, there was no word for non-binary in Dutch, which makes it surprisingly hard to figure out how to identify. But that was my initial introduction to advocacy. And these days, even though my focus is specifically on disability advocacy, there’s such an overlap between those two groups. There are so many people who identify both as queer and disabled. And so many queer people I know that sort of figure out later in life that oh, hey, they’re neurodiverse.
I think for the longest time in different ways, both queer communities and disabled communities have struggled with living up to the perspectives and ideas of people outside of our communities. And when it comes to queer communities, there were like, very set ideas of what it is to be gay, what it is to be transgender. And, obviously, those were heavily stigmatized.
And when it comes to disability communities, there were very set ideas of specifically about things like agency and having the freedom to be yourself. And I think those two are very similar in very different ways. And one of the things I see happening now, and I hope it’s something that especially queer or disabled young people recognize too, is that there is more room to be yourself in both of those scenarios. And that makes it easier to explore what being yourself actually means and… exploring parts of you that were for longest time not seen as normal, whatever normal means. And I think that there’s a beauty in that.
I think there’s a lot of space in the world for all of us to be who we are, and not conform to what other people expect us to be. And that’s a good thing.
I hope that, even though we’re living through such hard times right now, and in so many ways, it occasionally feels like the future doesn’t look any brighter, I hope that one of the ways in which it does is because people have more freedom to be who they are. If there’s anything I want to tell younger people is that their freedom is hard-fought for and the fight needs to be continued. That means that there’s responsibility on all of us to make sure that we keep that freedom alive. I think there’s a lot of space in the world for all of us to be who we are, and not conform to what other people expect us to be. And that’s a good thing…..
Daisy. That’s so important. Can you you tell me more about We Need Diverse Books?
Marieke: We Need Diverse Books is an organization that came into existence… that originated as a hashtag on Twitter, as so many things do these days. It was focused on the idea that books need to be inclusive to all readers… the reader needs to be able to see themselves reflected, but books can also create empathy and understanding by seeing other people reflected and in doing so create a space where everyone can grow…. For a long time, there was a very specific group of people who made up the majority of authors or editors. And those two things combined created the homogeneity of characters. And that doesn’t say anything bad specifically about those people. But it does say something about the system. And We Need Diverse Books meant to shake up that system and both convince people of the necessity to write inclusive books, but also the necessity to make sure that editors come from all walks of life and for authors who deal with barriers to become published, we should find ways to tear down those barriers, to mentor them to create new opportunities…. We Need Diverse Books sort of really helped kick start that conversation to a higher gear several years ago. And it’s bee really heartening to see that change.
It was an absolute delight to be a part of that was a very honestly, but ….at some point I did have to step back a bit, because I was, at that point, specifically focused on both my own books and my job. And that’s, that’s a hard enough combination for most people, but it was it was definitely trickier while also being disabled. And there’s just, unfortunately, still 24 hours in the day and occasionally also needed sleep!
….In the end, our focus needs to be on creating fictional worlds that are welcome to all. I started out as a YA author, that’s still very much my focus. And that means that it’s so important to be able to tell teens that, “Hey, this is what the world should be, this is welcome to you,” instead of sort of ignoring whole groups of people, because of the color of their skin, because of their sexuality, because of disability or not. I think the focus should be on creating fictional worlds that are both representative of our world and maybe a little aspirational.
At the End of Everything… is a pandemic read… [F]or me, books are escapism and weirdly enough writing a book about a pandemic was sort of also escapism, except I made it worse! But it’s a book about survival. And it’s also about disability, obviously. And it’s a book about community. So I really hope people like it.
Daisy: Oh wow. What great worlds you create. Can you tell me a little bit about your next book?
Marieke: Yes! It’s coming out on January 25th and the title is At the End of Everything. It’s a pandemic read so it won’t be for everyone. But for me, books are escapism and weirdly enough writing a book about a pandemic was sort of also escapism, except I made it worse! But it’s a book about survival. And it’s also about disability, obviously. And it’s a book about community. So I really hope people like it. My perspective was, that even at the worst of times, there can still be a sense of community and hope and family. So I hope that resonates with people.
Daisy: I’m sure it will. I know it will. We can’t wait to read it. Thank you so much, Marieke!
To learn more about Marieke Nijkamp, visit their website at https://www.mariekenijkamp.com or head to Instagram or Twitter @mariekeyn.