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Episode Karol
Podcast

Why do Disability Pride and Disability Representation Matter? With “Cursed” novelist and JIA Patient Karol Ruth Silverstein

July 14, 2021
52 min read
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In episode 39 of the Arthritis Life Podcast, Karol Ruth Silverstein shares what it was like to grow up with JIA (Juvenile Idiopathic Arthritis) and how that inspired her to write her award winning young adult novel Cursed.  Karol and Cheryl also discuss the importance of disability representation in books and media at large.

Episode Karol

Episode at a glance:

  • Karol’s experience getting diagnosed with JIA at age 13 and being angry, terrified and grumpy about it
  • The importance of disability representation beyond the cliche “inspirational” story
  • How Karol learned the importance of partnership with a doctor and taking an active role in her care in her 20s
  • Why Karol identifies as disabled, rather than a “person with disability” (including a discussion of the #SayTheWord, #TheWordIsDisabled movement)
  • How both Cheryl and Karol have confronted their internalized ableism
  • Why Karol wishes she had listened to her occupational therapists earlier, and why occupational therapy is so important for people with rheumatic diseases
  • Excerpts from Karol’s award winning young adult novel “Cursed,” about a young woman with JIA who is “frank, funny and full of f-bombs.”
  • The importance of disability pride

Speaker Bios:

Karol Ruth Silverstein is a children’s book author and screenwriter. She was diagnosed with juvenile rheumatoid arthritis at 13 and has identified as disabled since 21. Originally from Philadelphia, she now lives in West Hollywood with her two exceptionally fully cats.

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

This episode is brought to you by Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. 

Episode links:

Medical disclaimer:

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Transcription

Interview between Speaker 1 (Cheryl) and Speaker 2 (Karol)

[Introductory music]

Hi! My name is Cheryl Crow, and I am passionate about helping people navigate real life with arthritis. I’ve lived with rheumatoid arthritis for 17 years and I’m also a mom, teacher, and occupational therapist. I’m so excited to share my tricks for managing the ups and downs of life with arthritis. Everything from kitchen life hacks, and how to respond when people say, “You don’t look sick”, stress, work, sex, anxiety, fatigue, pregnancy, and parenting with chronic illness — no topic will be off limits here. I’ll also talk to other patients and share their stories and advice. Think of this as your chance to sit down and chat with a friend who’s been there. Ready to figure out how to manage your arthritis life? Let’s get started. 

Cheryl:    Hi, Karol! I’m so happy to have you on the arthritis life podcast, welcome.

Karol:       Thank you. I’m happy to be had. 

Cheryl:     Yay! Can you start off by just telling the audience a little bit about your relationship to arthritis?

Karol:       Sure. I was diagnosed at 13. They called it juvenile rheumatoid arthritis back then, or JRA for short. And I had a pretty bumpy, beginning with my relationship with arthritis, and the doctors, and my family was a bit of a mess so I didn’t get a lot of support. So, it was a pretty bumpy start. And then when I was 21 was really sort of when I crossed the threshold, in my mind, from someone with a chronic illness to identifying as disabled, and it was actually a positive thing for me in a lot of ways. And it’s when I first met a doctor with whom I really had a partnership, and I’ve had a lot of joint replacement surgeries since I live independently. I live across the country from my family of origin, I have a big, full, beautiful life, and arthritis is ever present in it, in many frustrating ways, and some just water-to-the-fish ways. But there’s no separating me from my arthritis, or my disability.

Cheryl:     Wow, yeah. There’s so much to unpack there, but I love how you talked about like, I think a lot of people think that they have to eliminate, or annihilate, or beat their arthritis in order to have a full and meaningful life, and you’re proof that that’s not necessarily the case, right.

Karol:       And I’ve had a particularly bad time, you know, bad luck with arthritis. Even one of my doctor who I, you know, at first formed that relationship with who’s now my friend, he said, “You know, of all my patients, like you’ve gotten a lot of bad breaks,” and some of that — this is my kitty in the back of me, I’m not growing a black, furry lump from my back — some of that, you know, I didn’t take the best care of myself or my body, but some of it was just luck of the draw, and, you know, had 12 hip replacements and both knees replaced, so. 

Cheryl: Oh, wow. Well, I already have been wanting to do a separate episode all focused on what’s it like to get a joint replacement, so I’m like, oh, I’m going to keep you in mind for that one. But, you know what, actually I’m gonna move on to the book first, and then — because there’s so much I want to explore in the book, but I’m definitely going to circle back to the idea of kind of accepting and embracing your identity as a disabled person, because that’s something that not a lot of people maybe have thought about or understand. So, I’m curious like what inspired you to write your book ‘Cursed’ and give, I guess, two questions — can you also give the audience a little bit of a synopsis of what it’s about? 

Karol:       So, ‘Cursed’ is a young adult novel that is a novel that is drawn from my experience of being diagnosed and really not handling it well. And it was published by Charlesbridge Teen in 2019, and it went on to win the Schneider Family Book Award, which is an award the American Library Association celebrates the artistic expression of the disability experience. And that was like, that was the award I wanted to win, and I didn’t think I would do it, and I ended up winning it. So, it is funny, frank, and full of F-bombs. Cursing is a big theme in it, and it was my way of sort of presenting an experience closer to mine, rather than sort of inspirational and someone with a whole lot of support, and that that kind of trajectory which people have, and my hat’s off to them and God bless them. That wasn’t my experience, and I knew that there were kids out there, whether they were dealing with a chronic illness or anything else, where they just didn’t handle it well. So, I wanted to let those kids know you’re not alone. 

                   And the reason how I came about to write ‘Cursed’ is, I had a screenwriting mentor in the 90’s — I came out here to Los Angeles from Philadelphia to go to the American Film Institute, and I was gonna work in film and TV — and I was writing, and I had a mentor. And this mentor, Holly Goldberg Sloane, is a writer, director, and now an award-winning children’s book author. And we were getting to know each other and I told her about my background of getting sick and 13, and she said, “Well, that’s really interesting. You should write about that,” and, you know, I was a little hesitant on on a few fronts. There is the, “I don’t want to be the disabled writer writing about disability,” but more so I was really focused on another project, and I didn’t — most of what I’d seen and read was sort of the inspiration-porn type stories. And I certainly didn’t want to write that. That was not, you know, my experience at all. So, I thought, well, if I’m ever going to do it, it would be this, you know, messy, foul mouthed, angry girl. 

                   So, I let it percolate on a back burner for quite a while, and I was in a writing workshop and did a little writing exercise, which was as simple as ‘Pick an age and free-write as yourself at that age’ and I picked 13. And out Erica came, and then I was like, “Oh, I think I have the entry into this book.” And it was really hard to write, it took me a long, long time, but that’s sort of the origins of the story. 

Cheryl:    I love that so much and all, you know, those in the audience who’ve listened to me talk before know that I definitely have in the past tried to put myself in this box of like the inspirational person, or like the A-student, or I want to be like the best patient the doctors ever had and have, like, get gold stars. And I have, as I’ve gotten older, you know, learned to embrace the messy sides and be like, give myself permission to curse, and give myself permission to be like, “This is not fair, this sucks sometimes.” 

Karol:       If there’s any message to anyone newly diagnosed with a painful chronic illness is that if you’re angry, and terrified, and feel a little sorry for yourself, that is a reasonable human reaction to what you’re going through. I would never recommend that you curl up in a fetal position and cry yourself for the rest of your life, obviously, it’s not going to be a very fulfilling life. But you are having a reasonable reaction. This is tough. This is hard. And in my experience, it was particularly difficult like the first year. And when you’re 13, the last thing you want is some old lady disease that people don’t understand, and to be bodily different than everyone else in your class, so it was dark period. 

Cheryl:     I truly can’t — I mean, I could imagine it enough to be terrified at what it must have felt like, yeah, kids are just brutal. You know, they’re just — they’re brutal to each other, they’re brutal to themselves, especially teens. So, I think that complexity in the book, I mean, there’s so much. I’m not a book critic, I mean, in my head I am every time I read a book, I’m like here’s my critique, but I really, I truly loved your book as an actual piece of writing. And, I’m a John Green fan, I mean, I read some YA — YA stands for young adult, by the way, I was trying to define my acronyms — but, I mean, the complexity of the relationship between Ricky or Erica and her parents, and the relationship between her and the teacher, and the doctors; there’s just so much to unpack. I don’t know if there’s a quote, I’m just telling you. I’m gonna fan girl for a second. Can you explain to the audience who might not have heard of that before —?

Karol:       I would recommend everyone listening to your podcast and everyone in the human race listen to Stella Young’s TED talk called ‘I Am Not Your Inspiration, Thank You Very Much’, and she sort of coined that term. And it basically means, the inspiration-porn, are the things that objectify disabled people for the benefit of able-bodied people. Like the, you know, the picture of the adorable young Paralympian, like, “You have no excuse.” That feel-good story about how, “Isn’t it nice that they left this disabled kid take a shot at the basketball court and everybody cheered for him? Isn’t that sweet? Bless his little heart,” like that stuff, you know, it’s just objectifies and infantilizes disabled people, and I’m not having it. 

Cheryl:     Yeah, yeah. When I came across that phrase, it really hit home to me because I had worked for many years with children with, at the time, it was called a special education or children with special needs, which I know even now many people in the disability and disabled community don’t like that phrase, like ‘special needs’. Like, we’re all just humans who have different needs, right, but it made me really confront at times, we use the fact that you’re celebrating someone else’s disability as a way to make yourself feel better about yourself, and it’s not really about them, it’s about you. 

Karol:       It’s all the things, you know, “I appreciate my life more because, God forbid, I’m like this person.” Like, that’s really what’s blinds us.

Cheryl:     Exactly, and then you’re trivializing it. I was reading a review — and this is a whole other huge giant can of worms — I was reading a review of Sia’s much-maligned movie ‘Music’, which —

Karol:       I read about that. I don’t know too much.

Cheryl:     I can’t watch it, but it was about — you know, there’s a lot of things wrong with it, it really trivializes the experience of — 

Karol:       — this is Boo (a cat), say, “Hi,” Boo. 

Cheryl:     Oh, hi, kitty! [Laughs] Cats are welcome here. 

Karol:       I have a black one and a white one, so no clothes are safe. 

Cheryl:     Oh, that’s perfect. They balance each other out, right. But yeah, basically in that movie, I thought one of the most important criticisms of it was that, you know, the disabled person, in this case an autistic individual, was used to further the neurotypical person’s growth, you know, like, “Oh, I’m learning about the world from you,” instead of — 

Karol:       That’s a problem in children’s literature. I’m in a private Facebook group where we can bitch and moan as much as we want, where the disabled character is used as a prop. They either inspire, or they are a conflict, are they are there to implement the ‘real’ characters growth. 

Cheryl:     Yeah, and, you know, in children — I mean, you know more about children’s literature than I do — but my experience with children has been that they’re pretty savvy about that. They’ll start tuning it out when you start saying like, “Today we’re going to read a book about Timmy who was in a wheelchair, but he never gave up, and we should all be like Timmy.” It’s like, they don’t like that either, you know, to some degree. So, yeah, the fact that you allowed the main character of ‘Cursed’ to be her own, again, not just an inspirational, perfect model patient, but a full, complex human being, is so great. Thank you!

Karol:       The other term I’m going to campaign to eliminate is ‘differently-abled’, and I have a whole spiel about that. I was actually going to make a video for nErD Camp PA, but I just was too busy this week, it’s just #SayTheWord, #TheWordIsDisabled. 

Cheryl:     Yeah, yeah. When I’ve been running my little support group, Room to Thrive, it’s been interesting. I didn’t plan on this happening as my master plan, but almost every week we’ve ended up talking about ableism and our own internalized ableism. 

Karol:       And that’s in my book a lot too. I was preparing a talk, may or may not happen at this point. And I you know I want to introduce the idea of ableism, but I’ve a very short period of time, so I was like, let me just get a quick definition and I googled it. And literally the first definition that came up was something like, “Prejudice in favor of able-bodied people,” they erased disabled people from the definition of ableism. I was just like, this is so meta. It was just like, oh, my God, I can’t believe it. So, yeah, there’s a lot of work to be done in that area. 

Cheryl:     Yeah, absolutely. Yeah, that’s a whole other — we can maybe circle back to that towards the end, but I appreciate what an advocate you are.

Karol:       One other thing, I certainly have my own ableism, internalized ableism. I was listening to a panel of disabled TV writers, and one of them said the most profound thing. Like, she shared that when she was checking out at the grocery store, it was like taking her a little bit longer, she always used to be like, “Oh, I’m so sorry, I’m so sorry,” to the person back of her, and she — that’s, you know, internalized ableism. She has corrected herself and what she says now is, “Thank you for your patience,” that’s like, yes! Yes, I need to start doing that, because it’s like acknowledging that yes, they’ve been slightly inconvenienced, and thanking them for being patient, but not apologizing for taking up space on the planet. I love that. That’s one way to combat your own if you have it. 

Cheryl:     I love it. Yeah, like a simple daily reframe or word choice switch that makes a huge difference. I love it. One of the things I wanted to read from your book was the definition that the main character gave us of arthritis, which is so great. I mean, I think all of us who live with inflammatory forms of arthritis have at some point tried to figure out, “How do I explain this?” The word arthritis is just not severe enough, right, to explain it.

Karol:       Things like minor aches and pains, that’s the phrase that we hear — “The minor aches and pains of arthritis.” 

Cheryl:     So, okay, here. I’m gonna read it and then we’ll have you expand on it a little bit, so, “That’s the key to my misery — joints. A joint is basically anywhere one bone meets another, and all of my joints burn with pain. Like I’m on fire. Think about the skeleton illustration again, but zoom out for the whole-body view. See all those bones-connected-to-other-bones? Now imagine each of these joints ablaze with hot, red flames. Yeah. Now you’re getting it. Plus, an added bonus of my delightful disease is that I’m tired all the time. Like, can’t-keep-my-eyes-open tired. All the time.” I love it. And I just, I love that definition. And I’m just curious if, are there any other like metaphors that you found useful or other ways that you’ve put words to the pain, other than your entire book?

Karol:       Yeah, you know, the burning and the grinding is what I try to use to explain if somebody asks, but it’s also the exhaustion and I’m sure you’ve read The Spoon Theory essay, yes. So, another thing your listeners should look up, and it just talks about in terms of your energy, and just what you can handle. If you think of it that you have a limited number of spoons and if you have to get up and take a shower, that takes a certain amount of spoons. And then you’ve got to run an errand, and that takes spoons, and you’re not left with that many spoons. So, I had a dear, dear friend who’s very spontaneous, and he would call me up and say, “Hey! You want to go out to a movie?” and I’m just like, “Oh, no, it’s — no way,” and he’s like, “Oh, man!” you know. And I had him read that. And then, if he does that, he’s like, “Hey! Do you wanna go out to dinner?” I was like, “Don’t got the spoons,” he was like, “Okay, I get it.” 

                   So, the exhaustion. And I am a controlling person, let’s be honest, but part of my controlling nature is that I’m actively working to eliminate frustration and danger in my space. And so, when I say, you know, “Can you please put that in the fridge with the handle facing out,” I’m not just being a controlling bitch. I’m saying that that takes a little bit of frustration and struggle off of me, it’s one five milliseconds fewer that I have to be on my feet and bending over. And so, that, you know, I try to explain that. 

Cheryl:     Yeah, no, I love that. I love the — The Spoon Theory is such a vivid metaphor for so many people. And I’ve heard also some people resonate with the faulty battery charger, or maybe faulty battery charging cable, where like your battery just doesn’t charge all the way like someone else’s. But yeah, and the idea that these little tasks, because I think it’s just really hard for people who haven’t lived with pain to kind of imagine how many small tasks, you know, add up, so that totally makes sense. 

                   The other thing I want to talk about — because I hadn’t experienced this too, too much, I was diagnosed at age 21, although my parents did — my mom accompanied me to a couple appointments because I had gotten really, really sick and kind of had some really, I don’t know, I just, I needed an extra set of ears. I was just so like deconditioned and just ill, I needed help. But, of course, and then I got accused of, you know, being like a hypochondriac, and all that stuff. But anyway, in the book you talked about that you have a lot of examples of the complex relationships in pediatric rheumatology where you go to the appointment with your parents, so you’ve got like three people in the room, not just the rheumatologist and the patient, but then the parent too. So, I’m going to read this little passage. 

                   “So, how is she doing?” he asked my mom. Oh, he is the rheumatologist. He talks only to mom, never to me. Like we’re at a veterinarian’s office and I’m the family pet, panting and wagging my tail while they decide whether the most humane thing to do would be to put me to sleep. Dr. Blech-stein and mom chat away as he feels my joints and moves my body parts around checking for changes in range-of-motion. “Why aren’t you wearing the wrist braces I prescribed?” he asks next. Because they’re ugly and I hate them and I left them in my locker at school like, I think. I shrug. “It’s important,” he insists, clearly frustrated that I don’t adhere to his every command.” 

                   So, first of all, why is it important for the doctor to speak directly to the patient, even in pediatric cases? 

Karol:       Well, you know it’s that idea of the patient herself being erased and infantilized, you know. Even when it’s — I guess when it’s an infant, they got to talk to the parents — but I did take some liberties, like, I don’t remember my doctor at Children’s Hospital being that over the top. That doctor was sort of based on an orthopedic surgeon that I’ve had more recently, who is just the most stuck-up, pedantic, jerk. But I just, you know, I really grew to learn that being in partnership with my doctor — either use whatever metaphor you want, whether you’re on the same team, or he’s the coach and you’re the star quarterback, or you’re in partnership and you’re working together — for me to be involved in my own recovery, it gives me agency and it empowers me to be a part of this situation that feels so incredibly out of control. But if I am an active participant in my treatment plan, and my opinions are listened to and matter, it lessens that blow of this completely outside thing that you really don’t have any control over. 

                   So, that was really a huge difference for me transitioning from this kid who was just so pissed off at everybody, and the doctor was the enemy, to somebody who was actively engaged in my own well-being. And it took me until I was 21. So, one of the hopes with ‘Cursed’ is that younger kids learn, “Oh, this is — I can do this, and this is gonna, I’m gonna benefit from this in a lot of different ways.”

Cheryl:     That’s so great. I mean, what’s wonderful about that is it’s not only more enjoyable as the patient, it’s actually like the research shows that that’s where the best outcomes come out from, where patients are actively involved in their care. It’s not just like patient-centered care, where it’s like, oh, the patient’s in the center but like I’m still telling them kind of what to do. It’s like that, like you mentioned, the partnership model. And I know, it makes sense, right, because you’re living with this 24/7. So, no matter how wonderful your rheumatologist is, like one appointment every three months or two months is not going to be sufficient for you to manage this on like a minute-by-minute basis, you have to learn those tools.

Karol:       Right, and your rheumatologist really needs to hear from you of how those month, two months, three months, whatever it’s been, how it’s been going, and how you’ve been feeling, and what’s been flaring, and how’s your exhaustion. 

Cheryl:     Yeah, and something else I’m just gonna mention for the record that some people don’t end up learning, is that the blood work is only part of the story, so the rheumatologist needs to know even if your blood work looks good, how have you actually been feeling? Because your symptoms don’t always track along with the blood work. 

Karol:       Yeah, I’ve found that sometimes my symptoms are behind the blood work and sometimes they’re ahead of the blood work. Like, oh, your blood work looks fine, and then the next month it’s like, oh, your CRP is really elevated. I told you I was having a flare up! 

Cheryl:     Totally. And I think, you know, the point about you not wearing your braces, the little wrist braces, I think that’s so important. I mean, I’m an occupational therapist, you know, we’re trained in the books, in the textbooks. And we are trained to be very, you know, partnered with the patients and ideally, we should, but I think sometimes we get our blinders on, and we’re like, “Okay, what’s the best brace for the patient,” without remembering that they may not want to wear it. So, like in your case, you know, did you, when you were younger, was it difficult for you to have anything that visibly stood out, like, you know, having a brace or —? 

Karol:       Yes, I mean, all of that when I was 13, I just wasn’t — and in high school — I just wasn’t having any of it. And I will say, once I started working in partnership after I had my first knee replacement, and I was given wrist braces, and I came back like a few years later for a different surgery. And the wrist braces are all sort of like worn in, a little dirty, the Velcro was kind of crappy, and the OT was just like, “Oh, this is the most beautiful thing in the world.” So, I, you know you’re gonna ask me later, you know, just as I have for for newly diagnosed people and I just, you know, this isn’t a setup, but I always say — I swear I say this — listen to your OA, your OT, like, she’s the voice of God. And do everything, like do everything your OT says. Because I didn’t, I couldn’t be bothered, and I have significant deformities. My function and my appearance, has been significantly affected. Now I’m still able to do what I need to do and everything but, like I said, I had a bad time of it.

And now there’s the biologics.  So, people don’t necessarily — they’re not at risk of having as many deformities and loss of function as I have, but it really makes your life easier when you have, when you retain your range-of-motion. And the psychological effect of having significant deformities is significant, you know, and I’m just like, I’m just active in it, this is me, this is how I look, my friends love me, I have value. But it’s hard sometimes. It’s really, you know, I love Zoom, I can keep my hands down. But, you know, that is — psychologically, it’s rough. So, if you listen to your OT and you practice joint preservation, you wear your wrist brace, and you do your shoulder exercises, you greatly increase your chances of retaining the appearance of your hands, and the functionality of your hands and upper body. So, I swear, Cheryl did not pay me to say all this. I say it all the time. 

Cheryl:     Oh, that’s so great. I mean, first of all, I’m so glad this is being recorded. I want to give this to all my OT friends and say give this out! No, I’m just kidding.

Karol:       OT’s, I always consider you guys like kind of superheroes, like Inspector Gadget. When you get like a really good OT and you’re trying to make some customized gadget that fits your hands and your strength, and it’s like, “Oh, what if we use this thing! Oh, I can melt this down,” it’s like, I love working with a good OT to like create stuff. 

Cheryl:     No, thank you, thank you for saying that. I definitely love highlighting the importance of occupational therapists, because we’re often underutilized in rheumatology and I know part of it is that because we’re in the biologics era, that sometimes they — but the rheumatologist don’t feel that patients have as severe of needs, but we still, like you mentioned, an ounce of prevention is worth a pound of cure. And one biologic won’t necessarily work for you forever, like I’m on my fourth biologic in 18 years.

Karol:       That’s the other thing, is that they run their course. I love, love, love, love your TikTok videos. I admire you so much, because it just like, she’s just so out there, and just like, you know, hip, looking cool, you’re young, you’re pretty, they’re fun. You bring fun. And you had one where you were showing a bathroom aid, and the bathroom stuff is like the last echelon of stuff people don’t want to think about or talk about. And you did that one, and everything was just like so, like, and this is how you use it! It was just like a ‘Ping!’ and I was just like, oh, my God, God bless her. I love your TikTok videos. 

Cheryl:     Thank you. Well, I think I am definitely an overthinker, like mentioned earlier, so I’m like, I do want to toe this line between being like, I am a happy-go-lucky person. It’s just my inborn personality, right. It’s like, I was a happy baby according to my parents, you know, so I’m not like faking that part of myself. But I also don’t want it —

Karol:       I was a happy baby too, I don’t know what the heck happened.

Cheryl:    [Laughs] No, well and then, but the thing is, again, I’ve put so much pressure on myself at times to only, like in the past like think positive and only look at the positive, and I didn’t allow myself to — like, I went to therapy as a patient to process. I didn’t process anything negative in my life really until then, and I was like given permission to. But putting it on TikTok and stuff, I’ll still get people saying, “Oh, how long have you been in remission?” and like, I haven’t been in remission since I was pregnant, like, and that was just a temporary remission, you know. Before then, it was like 2008, so, you know, just because I’m able to, again, my disease is more well-controlled than it would have been if I was diagnosed before the biologic era, but I have mild deformities. I don’t have complete normal range-of-motion like my thumb. Again, I’m not complaining, but I mean, my thumb, this one doesn’t go down like my right one. And like, I can’t do a bra with my right shoulder, but back to your point about — I’m trying to like — it’s really funny, I just found out that Dax Shephard, famous actor and podcaster, he’s now — like, would love to have him on the podcast list as well — he has psoriatic arthritis. And he had a funny little discussion with Ted Danson who also has psoriatic arthritis, and they were talking about how arthritis is such an unsexy diagnosis. And I was like, just accept it! I’m trying! 

Karol:       Well, Dax Shepherd is pretty sexy, so, you know. 

Cheryl:     I know. Dax, if you’re listening, you are invited cordially (to the podcast). 

Karol:       I like that you’re destigmatizing the disability aids. Thank God, and like I often say — and I know you want to talk about my book — 

Cheryl:     You might have to listen to like a fan session for each of us. Yeah. 

Karol:       You know, I often say that the dumb little dressing stick? Like, I remember I was given my first dressing stick and the — I think it was from a PT — and he was like, I don’t know, you pants up with it, I don’t know, right, take it home. And then when I came back again, because I like had my knee replaced in ’85, and then I came back to have hip replacements in ’88 with the dirty, you know, wrist braces. And they’re like, oh! And I was like, I came with my dress stick, they can tell. They’re like, “Oh, you found a use for that,” I was like, “Dude, I have dress sticks all around my house. I use them for so many things.” They said, “You could give a workshop here at the rehab on all the multiple uses of a dressing stick,” and I consider it like my bat belt. 

                   Like, this probably before your time, but there was a show in the 60’s and 70’s of Batman and Robin and there would be in some extreme circumstance like they’re tied where a rotator saw is coming and cut them in half, and they’re like, “Oh, my gosh, I can’t get out. What will we do?” And then it’s like, “Wait, I have this gadget on my bat belt and it’s the perfect thing to get us out of this horrible mess.” So, my dressing stick is like my bat belt. I use that thing for so much. And it’s just a dumb stick with a hook on one end, and a push-pull on the other, and I have adapted. Some of them have a bigger hook, and some of them have this, and I feel like a dental hygienist, you know. I put on my shoes, I got this one for that thing, and then this one, you know. 

Cheryl:     That’s amazing. 

Karol:       So, I’m a little invention, but it is really the difference between my being able to live independently and not. 

Cheryl:     And so, you got that from a physical therapist — first of all, thank you for sharing — but then it sounds like you weren’t really trained on how to use it, you really learned it on your own.

Karol:       And I had an OT when I started losing range of motion in my shoulders. It was like, how am I going to put on my shirt, a t-shirt, or a sweater? And this is not a good example of an OT. She’s like, “Well, you know, you should just wear button up things,” and I’m like, “Never wear a t-shirt again?” And I was like, well, that’s unacceptable. So, I figured out a way to get my t-shirts on using a dressing stick. Just that I put one arm through, and then I use the push-pull to push it over my head. And then I put the other arm through. Like, voila, I can wear sweatshirts and sweaters. 

Cheryl:     Wow, that’s — no, we got to get you on TikTok making some of these life hack videos. 

Karol:       You know, one of my big pushes is to be on video more, and it is hard. I did an unboxing video, which is the big rage, and my hands were so present. And I did it just to get over my fear of doing it. I didn’t even brush my hair first or anything, clearly that’s not going to be posted anywhere. But, you know, I may do that this month to celebrate Juvenile Arthritis Awareness Month, and I will always brush my hair. But yeah, it’s tough. And I am like actively practicing acceptance, you know, and I have my initial reaction. And I have body dysmorphia, and I’m in recovery from an eating disorder, almost all these other issues with my appearance. But, you know, there’s the shock of the way I look, and then there’s just okay, that’s the way I look, people love me, I’m a great person, you know, I’m a talented writer, I’m funny, and that is just the way I look. And that is just the way things are. And get over yourself.

Cheryl:     In my experience, first of all, I little bit have a bit of a no-shame gene. I have a bit of a —

Karol:       Well, good for you! You could market that.

Cheryl:     Like, look at me! But it is more complex than that because I do have the same vanity that a lot of people have, you know, I’m like, “Oh, God, I’ve posted,” and it’s almost like exposure therapy now that, you know, I’ve been doing the videos for so long that I’m now — it’s like I’m adjusted to what I look like. In the very beginning, I would take screenshots and send them to my husband and be like, “Do I look like that when I talk?”

Karol:       Yeah, I have that same — like, I would be out at a party and really feeling comfortable and present, and enjoying myself. And then I would see the pictures later. And it was just like, there was such a disconnect between how I felt and how I looked. But of course, I’m seen that through the filter of my body dysmorphia, and my lack of self-acceptance. The other thing that dawned on me is that my friends who are around me all the time, they see me a lot more than I see myself. They see my hands more than I see my hands, because when you’re making a meal or doing whatever, you’re looking at what you’re doing. You’re not looking at your hands. So, they’re actually more desensitized to my deformities that I am. So, you know, if I was one of those hippies, I would, you know, stare in the mirror of my hands and tell tell myself how much I accept and love how I look, but I’m not one of those. Like, do not make me do that. I will not do that. 

Cheryl:     No. You know, I think that that’s like trying not to think of white elephants. Like, the more you try to make yourself think or not think something, the more you want to think about it. I think my therapist has drilled to me — it took me a very long time to understand in the framework of Acceptance and Commitment Therapy, also known as ACT, which is like my favorite therapy, mental health therapy modality. Acceptance doesn’t mean like — when we talk about acceptance in general, there’s like a positive connotation. Like, “I accept this, I’m at peace, I’m happy with it.” But true acceptance in the in the context of like mindfulness-based therapy is literally allowing whatever is present, and not running away from. It doesn’t mean that you have to like it. So, I allow this.

Karol:       That’s a big key. You can accept something without being particularly happy about it. 

Cheryl:     Exactly. Yeah. It’s like it really unburdened, at least for me, it’s such a relief. It takes a huge burden off to say like, I mean, I don’t like that I have rheumatoid arthritis, you know. I wish I didn’t have it. But I’ve accepted this as my reality, you know, but doesn’t mean that I’m like, I’m super, super happy that I have it. No, but I’m gonna, you know, I’m still gonna —

Karol:       I think you’re lucky. I know that you wanted to talk more about the book, and I know that we’re getting, you know, but this is a good topic for the Arthritis Life podcast. 

Cheryl:     This is good, no, yeah. 

Karol:       Two Chatty Cathy’s together, watch out, right? 

Cheryl:     I know. Okay. So, I’m scrolling through. Yeah. Oh, okay. Now I’m gonna do — do you think we have time for two more quotes? 

Karol:       Sure. 

Cheryl:     Okay, sorry. I read this like a year ago, but I was like, oh, I love it so much. Okay. 

                   “You can’t blame me for wondering what’s going on with you.” I’m in pain all the time. Everywhere. That’s what’s going on with me. When I still don’t respond, he says, “I have a theory…” “I’m not a vampire,” I say back, making a lame Twilight joke. He laughs, and I even laugh a little. “Believe me, you’d never guess.” “So just tell me then.” The last time I told my friends, they all abandoned me. I can’t risk that again. But I do risk it: “I have arthritis. And no, I’m not joking. It’s called juvenile arthritis. Even babies can get it. And four months ago, I got it. So, now you know.” I wait for him to laugh anyway, like Crush Boy did, or to be grossed out or disappointed at how mundane the truth is. But he doesn’t do any of that. Instead he says, “That’s actually what I thought it was. Polyarticular, right? Since it affects five or more joints?” And I just want to kill him. I’m not even sure why. I grab my backpack and get to my feet. They burn like hell, but I don’t care. “What did you do with my coat?” I snap at him. “What? I thought you were staying for dinner.” “Just tell me where my fucking coat is!”

                   Okay, end scene. I’m sorry, this is so — you’re gonna have to all just read this (the book), because this isn’t probably making sense how I’m just reading it out loud. But I think that that delicateness — is that the word — how delicate it is to approach telling a friend, much less a new friend, or maybe a love interest, telling them about your condition, is so delicate and so hard. I don’t know, do you want to share any thoughts on that? 

Karol:       Well, I know that when I when I was in high school, you know, I was diagnosed 13, I was miserable, things got a little bit more regulated but I would still limp and you know, still in a lot of pain. But I could sort of pass and I could maybe say, “Oh, I twisted my ankle,” you know. So, other than my closest friends, and I was a real loner anyway, so I didn’t really have like a circle. I would not disclose. I’d brush it off, or I’d say it’s some other thing. And then because when I was first diagnosed in Eighth Grade, like people were just, you know, they didn’t — they just thought it was so stupid that I had arthritis, and it’s dumb, and you’re weird, you know? So, I went to new high school, I was like, well, I don’t want to do that. And I remember my first really close gal pal in high school, who I’m still friends with today. She was the first one who like I would crash her house and she’d say, “Did you take your aspirin?” and she would call it you know, ‘my arthritis’. She was totally in in on everything. And she would make sure that I didn’t fall asleep without taking medicine. So, she was the first person that I really completely, you know, opened up about all of it to. 

                   But by the time I went to college, and I was quite disabled, this was before my hip replacement so it was a really pronounced Trendelenburg, for those that don’t know. And I remember coming out of a class and I could no longer pass. That’s something, like I don’t have an invisible disability. I’m like straight up in your face, nobody glares at me for parking in the blue spot. I remember leaving a class and chatting with someone I just knew from the class but didn’t know well. And she said, “You know, what’s your disability?” and I said, “I have arthritis,” and she did laugh because what she was seeing is not what people think of when they think of arthritis. And I was like, yeah, you know, I wasn’t offended by it. But she was like, she thought I was making a joke, like this severe disability you’re looking at, “Oh, it’s just, what hurts, it’s just arthritis.” And I said, “No, actually, it is actually arthritis,” and she said, “Wow, I had no idea.”

                   So, I don’t have the luxury of not disclosing unless I’m on, you know — I’m not on any like dating apps, or… If somebody sees me, they know I’m disabled. There’s no hiding it. And in a way, that sometimes, it’s a little easier.

Cheryl:     It’s like, you don’t have to worry about — well, I’m guessing you don’t have to worry about people questioning, “Are you sick enough?”

Karol:       Nobody accuses me of faking it, let’s put it that way. You know, a couple things I don’t have to worry about is that, getting glared at parking in handicapped spots. 

Cheryl:     Yeah, this is a good segue actually to talk a little bit more about disability rights and disability acceptance, or I’m not sure what the phrase that you would use is.

Karol:       Disability pride.

Cheryl:     Disability pride, that’s it! Yes. Yeah, can you tell the audience a little bit more what that means to you, and how you’ve done that? 

Karol:       Well, you know, I look at other pride movements, the Gay Pride, there’s the Women’s Lib, there’s, you know, Say It Loud – I’m Black and I’m Proud, I mean, these other marginalized or underrepresented groups that had to rise up and not apologize for their existence, but say, “This is my unique and beautiful self, and you will give me the rights that I deserve under the law. And we may not change your hearts, but we’re going to change the laws.” And I never — we’re just beginning to see that in the disability community. Before it was like, “Oh, I’m a person with a disability. It’s at the end of the sentence. I’m a person!” and it’s like, why do you have to assert that you’re a person and, of course you’re like — so, I really was not down with how they were handling it in the beginning. But now it’s really starting to come around. 

                   And I was on this committee at the Writers Guild of America that forever was called The Writers with Disabilities Committee, and every other Equity and Inclusion committee was like, The Black Writers Committee, The Asian-American Writers Committee, Latinx Writers Committee, and we were like, The Writers with Disability. Literally, we’re the only one. And I had campaigned for so long. And you know, we had older people that were really like, uncomfortable with that. And then as, you know, finally, we got a younger chair. And I proposed it, we voted on it universally, it was just a couple of stragglers. So, now we are the Disabled Writers Committee, just like every other committee and like I said, there was a #SayTheWord movement on Twitter. And, you know, I had the idea for this shirt. 

                   Way back, I wrote a I wrote a humorous article for the Philadelphia Daily News, called “I’m lame, I’m game, Get used to it,” and it was a sort of a humorous article about the different euphemisms and how, you know, I really just prefer disabled. It’s not the negative that you’re making it out to be. It’s a big part of my personality. It’s not the only thing but to put it on the end of a sentence, or to give me some sort of euphemism, you are buying into the ableism that created those things in the first place. One of my favorite ridiculous euphemisms was ‘physically inconvenienced’, which is — it’s a little snarky, and it is kind of accurate. Yeah, I’m physically — like I said in the article, like, if I have to like get my picker-upper and I dropped that, then I gotta get the backup picker-upper to pick up the picker-upper — I’m a little physically inconvenienced. 

Cheryl:     Oh, it’s so interesting. I know it’s hard for people, for many people, I think, to have to confront their own internalized ableism, this idea that all disability is bad. So, I think, like, what would you say to somebody who’s like, “Ooh, that sounds scary to be like, I’m disabled”? 

Karol:       Well, I really 1,000% feel like how you identify is absolutely up to you. And that goes with disability, it goes with all the gender fluidity, and religion, everything. I’m never going to say to someone, “You should be identifying as disabled,” and, “You’re not with the group,” you know, “You’re not you’re not toeing the line.” So, it’s very, very individualized. And I would just say, read. Read. There are so many articles. There’s some linked on my website, karolruthsilverstein.com, Karol with a ‘K’. And there’s any number of wonderful Twitter hashtags and discussions to follow where you can just read more about your, you know, signs of your own internal ableism. And it’s really your choice. It’s also natural. Like, don’t feel ashamed, because we all have it. Even if you’re disabled, you have it, you know. Because we are brought up, we live in a society that is constructed in a way that is not suitable for people with mobility issues, and a society that pokes fun at limps, or stutters, or needing two hands to pick up a water bottle. 

                   I mean, you know, take on both sides of the political spectrum. People were, you know, insulting, just having a field day with Trump’s, you know, his lack of strength, and I was just like, dude, there are a million things to criticize that guy for, but this one’s ableist. And then on the other side, oh, Joe Biden stutters. It’s so pervasive. 

Cheryl:     Yeah, I totally understand what you’re saying. Thank you for that clarification about like, I didn’t mean — I see my question kind of made it sound like, “Why should everyone embrace being disabled?” No. And that the idea that how you identify is up to you, but I think there can be — some people could think of a connotation in their mind of like, “Oh, saying I’m disabled or identifying as disabled means like I’m giving up on this idea that I’m going to fight, and I’m going to conquer and overcome,” you know.

Karol:       That’s the ableism. That disability is bad, that disability is giving in, giving up. Acknowledging the reality of your situation is giving up. People get there on their own time, and maybe they won’t get there, and that’s fine, too. 

Cheryl:     This is probably gonna sound like the weirdest analogy, but I was literally thinking about this as I went to the dentist earlier today, and I was thinking, like, there’s so many difficult things in life that we do just accept, right, having to. I mean, we don’t like them, but we accept that we have to do it. We have to brush our teeth, we have to go to the dentist, you know. And we don’t say like, “Well, my life is not worthwhile because I have to do these things,” you know. So, it’s the same thing with like — I loved at the end of your book, I guess it was, I don’t know if it’s called the epilogue or just the author’s notes — when you said that, you know, “I wanted to steer clear of having Ricky focus on being cured. The majority of kids diagnosed with arthritis won’t go into full remission and must find ways to lead big, beautiful lives anyway. Cursed is for those kids and others living with chronic illnesses and/or disabilities — as well as anyone who wants to better understand what it’s like to live with chronic pain.” I just was like, mic drop. 

Karol:       Probably ’cause mics are heavy, you know, when I do karaoke, I gotta use two hands. I made this graphic for the talk I am doing in another 34 minutes. And it really is about the duality of this societal pressure of what we’re supposed to be like, and all the big, messy feelings we have inside. And I’m so proud of this graphic. 

Cheryl:     Oh, good. I’m so glad.

Karol:       I’m learning Canva. So, this is a reveal of this graphic that I made. You like it? 

Cheryl:     I love it. 

Karol:       First, I did it red and black to be sort of on brand with ‘Cursed’. Yeah. 

Cheryl:     Love it. It reminds me of a little bit — like, I’ve seen somewhere, like what you don’t see? There’s what you see and what you don’t see. But I love that it’s like that inner tension between how we and will all — are you going to give me access to that so I can send, or I’ll try to link to your account whenever you post it, so people can know what we’re talking about.

Karol:       I’m revealing it at this book club thing today and tomorrow. So, let me let me reveal it there. And somebody said I should put like my name and whatever.

Cheryl:     You should, you should. And people should give you credit for it. Yeah, that way that we gaslight ourselves sometimes, I do it all the time. Do you really need that accommodation? Do you really — are you really sick enough? And it’s just, it’s so hard to be able to have that self-compassion and hold space for yourself to have two different things. Like, I’m experiencing something that really sucks right now, and I can allow myself to also be grateful of the ways in which my life doesn’t suck. 

Karol:       Yeah, absolutely. Absolutely. 

Cheryl:     I’m sorry, did you want to say anything more? I’m like, I’m interpreting your graphic.

Karol:       Oh, no, I just, you know, there is this pressure to, you know, be a good sport. And you can be a good sport and also have your feelings. So, balance in life. In almost every situation, there is — balance is always the best thing, I think. I can’t think of anything where balanced isn’t a good thing. No. 

Cheryl:     Yeah, oh, thank you. And just to wrap up, because I do want to respect your time, is there anything else you wanted to say to anyone, or advice for young people with juvenile — with us now calling it juvenile idiopathic arthritis? 

Karol:       Well, listen to your OT. 

Carol:       Oh, yes, of course! 

Karol:       That was, that was like, I was gonna put that plug in, and I’ll give you my address for the toaster you’re gonna send me. [Laughs] Yeah. No, you know, form of partnership with your healthcare professionals. And allow yourself to have big, messy feelings, if that’s what you’re having, because it is a reasonable human response to what you’re going through. And then the last thing is, if you’re really newly diagnosed that first year, I mean, just give yourself a break because it was so overwhelming for me. And you have all this physical stuff that you’re getting used to, there’s pain and exhaustion, what’s going to happen to me and, you know, all this gigantic stuff. And then you have all the emotional stuff of, you know, am I going to be able to live the life that I envisioned? And will people look at me funny? And will I meet the love of my life and get married? Will they — will I not be dateable? Am I going to be able to go to college? Like, all the — whatever this stuff is for you, this sort of plan that you had for your life is all kind of in flux now, and you’re not sure. 

But as Cheryl and I can attest, you can go do whatever it was that you were planning, you just need a little accommodation, it may take a little longer, but you are able to have — or even look at the the woman Ashley — I forgot her last name — who won a Tony. I mean, probably you can’t be an astronaut. I think there are really physical requirements for being an astronaut. But, you know, there’s Paralympics. You can an athlete, you could be a dancer. But just breathe and allow yourself to be a mess, if that’s what you need to do.

Cheryl:     Allow yourself to curse.

Karol:       And read ‘Cursed’! 

Cheryl:     And read ‘Cursed’! Yes, and oh, the book drive, that was the thing I didn’t want to forget. Can you tell everyone about it? 

Karol:       I’m doing a book drive for the month of July, the paperback is coming out July 20th. And all the information is on my website, karolruthsilverstein.com. And people will purchase copies of the paperback through my local indie bookstore, so you’re supporting a local indie bookstore. And at the end of the month, I am going to gather the copies and sign them and get them to a really nice local organization called Code Chart, which works with kids with chronic illnesses and disabilities in their family, and they are going to distribute their free books. One lucky person who participates will get a little ‘Cursed’ swag collection. So, it’ll be a book, either hardback or paperback, your choice. Some ‘Cursed’ swag, and a limited edition ‘Cursed’ mug, which are very cool. I have one left, and it’s going to go to one lucky participant. 

Cheryl:     That’s amazing. I will also do a little giveaway on my page too, if that would be helpful. I would be happy to sponsor that however I need to, but that’s so great. I mean, I just really recommend people to check this out. It’s one thing, you know — I’m hearing my 11th grade English teacher in my head, she used to really drill on us, “Show, don’t tell,” you know, and a lot of us with arthritis, we end up having to tell people, “Oh, what is it? Oh, it’s an autoimmune blah, blah, blah that causes this, and —“ but showing someone through a story, like humans learn through stories and your story shows the multifaceted experience of, again, the physical pain, the social effects on your friends, on your relationships. 

Karol:       So, all the mental machinations of dealing with your day. And that was another thing that I wanted to do in ‘Cursed’, was I wanted it to be first person present tense, so that the reader could slip into her skin and experience life as she experiences and I haven’t seen that a lot in books, you know. Such a visceral experience of some of the chronic things. 

Cheryl:     No, no. I exactly agree with you. I haven’t read very many. I do need to read the piano playing one. I haven’t finished that one. But other ones — I’ve had anxiety and panic attacks before, and when I read John Green’s ‘Turtles All the Way Down’, that was the first time I had read something that really described what it feels like when I’m having a panic spiral. I was like, “Oh, that’s it.” 

Karol:       And, you know, he does have OCD. You know, there is a certain level of authenticity when the author has the lived experience. And yeah, so, we want to see more books by disabled authors about disabled people.

Cheryl:     Yeah, when I looked — I did look into, very briefly, on writing my own book, a children’s book specifically. And I was shocked. There’s a lot of different specialty publishers for like, different kinds of diversity, like ethnic diversity. There was hardly anything for disability. I couldn’t — I was really surprised by that. But maybe there’s been more now, that was a few years ago. 

Karol:       Yeah, we’re getting there. 

Cheryl:     Yeah, we’re getting there. 

Karol:       We’re bringing up the rear, is what we’re doing. 

Cheryl:     [Laughs] Yeah. The last for the — Disability, the Final Frontier.

Karol:       Yes. The Inclusion Frontier.

Cheryl:     Inclusion frontier, yeah. True inclusion, not like — what’s the word — tokenism inclusion.

Karol:       Attitudes, yeah.

Cheryl:    Yeah, that was one of my pet peeves in the school system, like inclusion is not just throwing people with different needs into a room together. Like, you have to actually facilitate a meaningful experience in it. But thank you so much. 

Cheryl:     Oh, my gosh, I am honored. And I will be happily be your cheerleader slash accountability partner for making more videos if you are comfortable. 

Karol:       You’re welcome. Thank you for having me, I’ve just been enjoying your Instagram stuff. So, it’s an honor. I am honored. 

[Ending music]

Thank you so much for listening to today’s episode. This episode is brought to you by Room to Thrive, a membership and support community where you’ll learn how to develop your own Thrive toolbox so you can live a full life despite your rheumatic disease or chronic illness. Learn more in the show notes, or by going to www.myarthritislife.net. You can also connect with me on my social media accounts on Instagram, Facebook, Twitter, and even TikTok. Check out the links in the show notes. 

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