A Comic Draws (on) his Disability Experience

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LINDSEY WELLS, HOST: From KVMR and in partnership with FREED, this is Disability Rap. 

JARED WIKOFSKY: Just the way I functioned I took so for granted and thought was part of my life. Then as that changed, I had to be like, "Well, who am I and what am I worth?"

WELLS: Today Jared Wikofsky on his new graphic novel and his journey to accept his disability. 

WIKOFSKY: I felt like am I disabled enough to be representation and stuff? That was an idea I just completely had to shake. It's not some contest or something. 

WELLS: That's all coming up on Disability Rap. Stay tuned. 

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CARL SIGMOND, HOST: Welcome to Disability Rap. I'm Carl Sigmond with Lindsey Wells. 

WELLS: Today, we are joined by Jared Wikofsky. He is an independent artist and a comic creator. Jared has published and produced over 200 pages of comic work. Recently, Jared received a grant from Upstate Creative Corps. This led to his comic book Falling. The book delves into a life-altering diagnosis, and then the long-lasting effects of that diagnosis. Jared also runs and edits a podcast entitled Playing With Madness Podcast. It is accompanying horror show airing on all the major podcast platforms. 

SIGMOND: Well, Jared Wikofsky, welcome to Disability Rap. It's great to have a local person on the show. We've not had that in a while, so welcome. We want to begin by asking you, what got you into the world of creating comics and running and editing podcasts? 

WIKOFSKY: Thanks for having me. I really appreciate it. I always made comics. I made them pretty much as long as I can remember. It's normal for little kids to make their stick figure comics, which I was doing. Then in high school, I just kept getting more serious with it. I had a group of friends, and we'd make comics together, and swap them between classes, and draw group comics. Then my senior project for high school was trying to finish a comic. I didn't finish it, but I kept going with it. It just became my main thing. 

I'm really into storytelling and just fiction in general. The podcast spun out of that when it was COVID, and me and my friends wanted to hang out and do stuff, and the only way to do it was through Zoom and online stuff. We ended up making a podcast. It's been going for almost four years now. It's super fun. We really dig it. Mostly, it's for fun, honestly. 

WELLS: I was wondering, your comic book Falling delves into your disability story. What is your hope for telling your story? 

WIKOFSKY: There were a lot of reasons. It was something I was planning on doing before I heard the grant anyways, but then it just fit really well with the grant program. There's a personal reason where even my close friends really didn't know much about what I had been through or that it was still going on. When I did tell anecdotes and stuff, people were very interested in it. 

Then there's an outwards part of it where I feel like pretty much everybody is going to experience something like this, something with the healthcare system, something with your body changing, your mobility, just your life-changing like that. It's something we don't talk about very much. I don't know if it's as a society or just with humans. I don't know. I wanted to put it out there and see if people-- just so they would know they're not alone when it happens. There's these problems you're going to run into and they're relatable. Multiple reasons, I guess. 

WELLS: In your book, you mentioned being misdiagnosed with multiple sclerosis, and then not having the correct diagnosis for over a year, as an artist and comic creator, how did that impact your work as a creator? 

WIKOFSKY: Oh, it was a rough time for sure. I just had no idea, and was just reading WebMD, and it was during COVID. I was year waits on any doctor to get checked out and stuff. Totally uninformed, really scared. My body was getting a lot worse a lot faster. My condition, basically, it presents as neuropathy. It's a little more complicated than that. When it was bad, it was getting worse and stuff. I was losing the ability to draw. I couldn't draw a straight line. My hands were all shaky and stuff. That was one of the scarier parts of it. 

SIGMOND: Jared, I want to go back a bit. For people who have not read your book, which by the way is a great book, but for people who have not read the book, can you talk a bit about your journey of discovering this disability and what that meant for you and your art? 

WIKOFSKY: Around my early 30s, I was working as a janitor and stuff. Everything started to get physically harder. A lot of people make a big deal about like, "Oh, once you hit 30, you're going to start hitting that wall, and you're going to start changing." I just thought it was that for probably way too long. It kept progressing until I started falling routinely, which just became the name of the book. I don't know when this started exactly. It was just part of my life. I start the book with one time me and my wife went for a nature hike, and I just fell six times, just couldn't stay on my feet, and had no idea what was going on. 

My job was very physical. I kept working and just getting more and more hurt. Until a nice principal, basically, just because it was out of school, I was a janitor at a school, just sent me home and was like, "We'll work out the payment and the disability. You just can't work here like this." Which really helped me out. Then it became this whole journey of trying to figure out what was wrong, and survive financially. At that period in time, I really couldn't work much. It was COVID. That both helped and hindered because there was more aid, but it was harder to contact people or get things worked out. It was impossible to find new work. I was just floating. 

As the journey continued, and I went through all these different stages of health, and care, and mobility issues, and all this stuff, it just started to feel more and more like a full story to me, like a narrative. I was like, "I could make a comic out of this." I've made autobiographic comics before. It all made sense. I worried because, mostly, I do comedy stuff, and I was like, "It's just too dark." It's not dark exactly. There's a lot of humor in it and stuff. It's life. It's a little up and down. 

SIGMOND: Thank you for that. In the book, you talked about being misdiagnosed with MS for over a year. Is that right? What was that experience like for you and what did you learn from your misdiagnosis? 

WIKOFSKY: That was kind of the hardest part just personally and mentally was just thinking I had-- from what I read, MS was a very frightening condition. It was worst case in my mind. I didn't really know anything was wrong, and then that was what I was told. I was out of contact with medical professionals for a long time after that. All I could do was worry. Mentally, it was just a spiral. I was planning my suicide and stuff, which I talk about the book, just in case it got too bad, which I didn't know what that meant, but just in case. That's not where you should be or what you should be thinking about. It's just what happened from the reality of the misdiagnosis. 

It was the hardest part to talk about in the book, but I feel like it's really important. People have brought up to me since reading the book, that a lot of people have experienced similar misdiagnosis where you change the trajectory of your life, and then you find out it's not true. That was mostly fear, and overcoming fear, and living with a long-term fear. Then a lot of relief when it turned out to not be the case. It still took quite a long time after that to find out what was actually wrong. It was a hard period for me, and one that I felt like was really important to cover. 

WELLS: Okay. I wanted to ask about in your book, first of all, what is digital art for people who may not be familiar with the term? Then I have a follow-up question for you once you answer that. 

WIKOFSKY: Digital art is art made digitally on a computer. It's really not my thing. I'm completely new to it. Basically, FREED got me some retraining money because I couldn't go back to my old profession. I used that retraining money to learn, take a Photoshop and digital arts course online, which I became-- I digitally colored the comic and digitally lettered it. I still handdraw it, but then I go back and add to the images I handdrew on the computer using Photoshop and other programs. I made my own font and did the lettering digitally, because that was something-- it's gotten better. When my condition was worse, I couldn't letter. I couldn't write text very well. It was a workaround. I need it. 

I wouldn't think I'm a digital artist. I'm not creating illustrations on the computer fully like I think a lot of people can do now. I'm maybe too old for that. I have tried, and it's not my thing. The extra help of digital arts was essential for this comic. It means a lot. It added a cool element to it that was weirdly tied in with the condition I mentioned in the comic as well. 

WELLS: Thank you, Jared. I appreciate that. I have a question about adaptability because you mentioned that in what you said just a moment ago. I was wondering how much did you have to adapt after your diagnosis to drawing and making this a creative process. Was it therapeutic for you? 

WIKOFSKY: Yes, probably. I would think so. It was also very hard. It's very frustrating to be able to do something, and then just not, just have it go away. Then relearning to do something you already could do is just mentally hard and difficult with pride, and ego, and stuff. That was the best part of it was getting past the condition and the mobility issues. Having to learn to ask for help and stuff was the very therapeutic part of it. I never thought of myself as egotistical, or proud, or arrogant person, or anything. You realize just the way I functioned I took so for granted and thought was part of my life. Then as that changed, I had to be like, "Who am I, and what am I worth?" Opening to that was really hard. I feel important. 

SIGMOND: Jared, going off that, what would you tell other people going through a similar transition and acceptance of how their body is changing? What would you tell them? 

WIKOFSKY: It can feel very isolating and intense, but it's a pretty important thing I learned. Also, this comic kind of gave me is you're not alone in that. I listened to an interview. It was Imani Barbarin, I want to say, is her name. She's a disability rights advocate. She said something I really appreciated that she's like, "Everyone, if they are lucky to live long enough, will experience disability at least in some way." Their mobility will change. Your body changes. Your mind changes. It's a part of life. It's not something to be frightened or isolated by. 

It is scary. It's something everybody can deal with. Just reach out to the other people around you, and the people are happy to help, and they want to help, and they want to be there for each other. That's a cool thing about people. A big thing I learned was just time and self-care, just learning to slow yourself down. When you're frustrated, or upset, or things are really hard, especially pain, and physically, and stuff, you have to just learn to take a step back. I don't know. My wife brought the futon outside, and I just sit in the backyard for hours a day. You can't just fight all the time. You can't beat being frustrated or things being hard by just trying all the time, too. 

SIGMOND: I really appreciate what you said. It speaks so much to the disability experience across disabilities. In the book, you mentioned FREED a number of times. Thank you, by the way. We are honored. Can you talk a bit about how FREED supported you and then how that support helped you accomplish your goals? 

WIKOFSKY: Yes. FREED was essential. It was definitely I wanted to give them a shout-out was part of the motivation for making this book because they pretty much-- I forget who exactly, I think it was my friend, Peggy, connected me to FREED. You're just so overwhelmed with bureaucracy and paperwork when you first go through a health event like this. There's no guide to how to start. There's no format. You don't know where to go or what to do. It's just infinite bureaucracy. You can go down and fight with insurance companies, and the federal agencies, and stuff. 

FREED basically initially just gave me a roadmap. Just told me to try to apply for disability, to apply for temporary first, and then see what could happen from there. Direction was super essential to me. Then later on when I started making the comic, part of the grant process was I needed letters from organizations and groups, like a partnership thing. FREED was the first one I thought of going to. They were nice enough to give me that letter which I'm sure was a big part of me getting the grant. FREED has been with me for all the following this comic and the whole process of the disability thing. I feel like I owe FREED a lot. 

WELLS: Thank you, Jared, for that. We really appreciate that. How do you think comics and graphic novels might creating more accessible? 

WIKOFSKY: I got tested for disabilities and stuff because I was such a late reader. I really had no interest in it. Then I remember in third grade, my teacher, Mrs. Ransom, she bought me a Calvin and Hobbes, and I loved the pictures and stuff. I was like, "Well, what do the words say?" and got curious to learn. It's pretty essential to learning, to read, and stuff. 

It's also just a very expressive way that's low entry. Almost anyone can make a comic and stuff. It's just such an easy way to transfer information. It's like a movie you don't need millions of dollars to make. They're incredible tools that people underestimate. I don't think people think about comics. There's just an association with kid stories and stuff which is great, but it could be anything you make of it. 

WELLS: What advice when you give to young and older alike that want to create a comic, but just don't know how yet? 

WIKOFSKY: There's a lot of frustration if you try to do it as a job, for sure, which has always been my dream. I've made steps towards it, but it's not there all the way yet. It's very hard. It's very competitive and stuff. Just making a comic is, I would just say, first, read a fair amount of them and find out what you like. There's mechanics to how people tell time and go do the sequence in comics. Very pretty. You could find all that on YouTube and stuff. There's a little bit of a storytelling craft to it. 

I would say just start making. If it's stick figures, that's completely fine. There's a incredible stick figure comics online and stuff. People who probably still don't think of themselves as artists, or visual talents, or whatever make incredible comics than WebComics I'm reading all of that all the time and stuff. Just tell your story would be my advice. 

WELLS: Who are your influences? You mentioned a couple earlier, but I'm sure you have a ton of influences or a comic artist that you enjoy. Can you share with us who that is? 

WIKOFSKY: Yes. For sure. This comic, a big part of it was Harvey Pekar's work. He made the comic series American Splendor. There's actually a good movie about him called American Splendor starring Paul Giamatti. He was a guy who just worked in a mail room, and lived a very normal life, and made just true autobiographic comics about it that are incredible. It made me realize how much there is to tell just from regular life, just from real life. 

One of his best books is My Cancer Year where he gets diagnosed with cancer and goes through treatment. It's a pretty dark story he tells with a lot of humor and fun to it. That was definitely an inspiration for just how you do an autobiographical story like that. 

Then more broadly, my interests are all over the place. I read a lot of sci-fi and stuff. Alejandro Jodorowsky is an international comic creator who's just incredible and makes these great epic sci-fi stories. Jim Woodring, I've actually met him a few times. He does these wordless comics, The Book of Frank. They're so funny and so strange. The art is about as good as anyone has ever made. He's a real character. I like his stuff a lot. That'd be a couple just to check out. 

I got to mention Maus. That was one I read when I was 12. You can get it through Scholastic. It's part of the book drives. I read it at school. It's a true story. A guy interviewing his dad about the Holocaust. It's something everybody should read. It's really incredible. 

SIGMOND: Thank you, Jared. I want to ask about the connection between disability and art making. Was it easier to tell your disability story through art? What was that process like for you? It sounds like you had already established yourself as a comic maker. What was it like to get personal, and draw, and write about your disability? 

WIKOFSKY: I've made comics in a bunch of different genres and stuff. I have a series week where I just do a comic that's a journal of a week, and other people have done them too. I made a book of them. I've done true stories before. People tend to really like those. They get the best reception of the stuff I do. I just felt a lot of trepidation about the disability stuff because I just don't feel I know a lot or I'm a good representative of anything. It's also just more personal than a lot of what I tell, even the true things. It's just my life very specifically and stuff. 

I just started to be like, "I don't have to represent anything but myself. I just have my story, and I'm allowed to tell it." I was partially motivated by, like I said, a lot of people. Even my closest friends and stuff didn't know and were confused. They were like, "Oh, this is still going on?" I had to tell them over and over again. It'll be going on for forever. This is me now. That was a bit of the selfish reason for it, was just so people would know the deal with me and stop asking. 

Yes, it was difficult and extra rewarding. It's also very hard to just do life drawings a lot. You draw real things. Drawing yourself is easy because you can take pictures. You're always around to be your own model. I just started to feel like, "Is this just some ridiculous vanity exercise? I'm drawing myself over and over again?" Yes. There's just almost insecurity to doing it that was the struggle to it. I think it came out extra rewarding because just people relate to it extra has really seemed to be the thing, and the subject matter too. People just like personal stories. I knew I like them too. Yes, it all came together like that. 

WELLS: I wanted to follow up with that question because I noticed in your comic that your friends weren't attentive to what was going on with you physically. They were like, "Why aren't you helping me lift a refrigerator?" How did that impact you, their reactions towards you? 

WIKOFSKY: Mostly, the problem with that stuff is inward. It's just pride and ego. I would try to do stuff I couldn't do. I had hurt myself a lot. That was just my own thing to get over. I talk about it a little in the comic, and people didn't keep good track of what was going on with me. Also, that's not life. People don't just sit around and think about other people's problems. I don't do it either. Everybody's going through a lot. We all compartmentalize that stuff and charge forward. I wanted to make it very clear. I don't resent anybody not retaining or thinking about it. It is funny sometimes. Sometimes it's frustrating to just repeat yourself over and over again. 

I understood why it was happening, where it was coming from. It's also just my instinct wasn't to talk about myself and talk about it either. I would realize also a lot of the time I wasn't telling them what was going on. When I did, it was hard, because sometimes it would make them sad or upset themselves and stuff. That's something we avoid is upsetting other people. It's the real world. I was just dealing with it myself to not upset others. Which is part of the comic, was just, "Now, I've just got to put it all out there, and not just sit around hiding stuff." 

It was mostly an inner world thing. I did want to mention that because that's something if you have a long-term illness, I've talked to a lot of people. Yes, other people, they can't retain it very well. They just have their own life. We all got struggles. 

WELLS: Yes, we do, unfortunately. I wanted to ask this, do you think that ease of entry makes it more impactful when telling difficult stories? 

WIKOFSKY: Ease of entry? What do you mean by that exactly? 

WELLS: How you present your comic. Do you think it makes it more impactful for people in how you presented your comic? 

WIKOFSKY: Yes. Comics, they're a low bar for entry. They're easier to read than a novel. People read them more than novels. They go quicker. It's less of a time commitment. I think they're a really good way to just get a message out there. I know some pretty young people-- actually, a friend was telling me today, her son read the comic and stuff which I was like, "Whoa," because I don't really self-censor a ton in it. 

I think that's a special perk of comics is their low bar to entry and how they're relatively cheap. They're easy to read. You can just carry them around. People just have them lying around their houses or just sitting in the bathrooms. It's just something you can pick up and get into. Yes, it probably does help get a message or story out there. It's just how accessible they are. 

SIGMOND: Great. Going along with that, I wanted to ask about disability representation within the comic genre. How do you think comic authors and artists can be more inclusive of the wide array of disabilities within their work? 

WIKOFSKY: It's hard because that was a struggle for me was disability representation. I felt like, "Am I disabled enough to be representation and stuff?" That was an idea I just completely had to shake. It's not some contest or something, and just comparing yourself to other people in any way. That is absurd and a waste of time. It's just something your brain does. As for the wider medium, I don't think it's a hugely addressed part of it. I did some just googling when I started the book to try to find other books, other comics like this. I didn't see a ton. I will say I've tabled a lot of conventions, and I love going to Comic-Cons. They're very inclusive and welcoming places. 

The community is they're probably the most open group of people I know, really, for just-- I don't think they discriminate anyone, really. I think there is a problem in the medium, and maybe, hopefully, I contributed to that a little bit of the stories they represent, like representing disabled voices with comics. I also feel that's seems like just a problem everywhere in the whole world, is people just like to sweep this stuff under the rug and not think about it if you're not dealing with it until it hits you personally and stuff. It's something that needs to happen across the whole culture, is people just need more of these stories, need to be told. Shows like Disability Rap, voices need to get out there more. It seems like that's happening more, and hopefully it continues to go that way. 

WELLS: Thank you for that, Jared. What are your upcoming projects? 

WIKOFSKY: I have a few. Right now, I've been obsessed with this very silly Marvel vs. Twin Peak series I'm doing on Instagram. That's just been a fun decompression after this big, long, more serious comic. My big upcoming projects-- I'm a little bit open right now, honestly. I've got like two books I'm working on. I'm going to do like a sci-fi because I've never done a straight up science fiction story. I love science fiction. It's my favorite genre. I was like, "Oh, I got to get into that." 

I really want to do more comics because this one was so, committed, and planned, and regimented. My next book is going to be-- I'm just going to wing it. I'm just going to start drawing and see what happens. 

I have a show-- I'm not sure when this will air. I have a show October 3rd. I'm going to be part of a grant exhibition thing at the root center. It'll be an installation of other good grant artists. That opens October 3rd. It'll be up for a few weeks. Hopefully, that's still up when people hear this. Yes. I don't know. 

I went to HeroesCon two years ago. It's a convention in Charlotte. It's one of the biggest. I went there with my brother. We're talking about trying to go next year. Hopefully, I'll pull that off next late spring, I think. 

Oh, I just started an art club thing, Nevada City Art Club. It's just an open to anybody, come meet up and do some art event. I just made it. It's not anything official. We had just had the first one two days before recording this. It went over really well. A lot of different people showed up. I'm going to try to make that like a semi regular thing. 

On my podcast, we're wrapping up our seventh season of it. Next up, I'm not going to be editing it, and running it, which I'm super looking forward to. I need more time in my life. Yes, I think the next thing is going to be full fantasy, which we haven't really done yet. That'll be something different. Check out Playing with Madness. There's tons to listen to there. 

SIGMOND: Jared, thank you so much for joining us. 

WIKOFSKY: No. Thank you. Thank you so much for having me. I really appreciate it. 

WELLS: That was our conversation with Jared Wikofsky. His book Falling was published earlier this year. 

And that does it for the show. Disability Rap is produced and edited by Carl Sigmond and Courtney Williams. You can go to our website, disabilityrap.org, to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We are brought to you by KVMR in partnership with FREED. We're distributed by PRX, the Public Radio Exchange. I'm Lindsey Wells with Carl Sigmond, for another edition of Disability Rap.