Furthermore, I have a lot of thoughts about your rich discussion around the visible/invisible, apparent/non-apparent binaries which I agree are much more nuanced. As a lot of other people, I find my illness and disability to be somewhere between the two. I have dozens of scars, some of them huge, tubes and medical devices, I use a walker or wheelchair, however my most debilitating symptom is the severely excruciating pain which is invisible. That is if you don't notice me being doubled over, blue-lipped, gasping for air, struggling to speak, grimacing from pain etc.
I also find that it isn't a privileged-unprivileged binary either. One interesting this is that I clearly notice the huge shift in people's stares and unsolicited comments when I'm rarely out alone with my walker (it's different when I'm in wheelchair wheeled by my partner) depending on if it's winter and I'm thus "invisibly" ill/disabled other than the mobility aid or in summer where people can see my central line in the chest and tube in the stomach.
Yes, yes! I find that the times my visibility shifts (no mobility aids around or I'm accompanied by a partner) my experience in the world shifts, too, sometimes quite dramatically. And it's this weird reminder of the way so much of our visibilities/invisibilities operate as shorthand symbols for the ones observing us. I'm sure I participate in this, too, in ways I'm not very aware of, as much as a strive for the opposite. And like you, I don't find that any of those experiences create crisp slices on the privileged/unprivileged binaries. It's messy! And even as we can't pin it down, it feels good to try to sort out together what it means to us -- how we're different and similar. Like comparing field notes -- this is what I see, what do you see? What is it like for you? Thank you for being a part of that!!💛
Thank you both so much for this conversation, dear Rebekah and Kirbi <3 It hit so hard! One of the things that resonated the most with me (along a lot of things), was Kirbi's proclaim of: "So it’s like this thing that I was doing to keep myself going was also the thing that was preventing me from getting full care, you know?" in the context of fooling the doctors with your couragous smile. At 30 and being severely ill, that's still very much how I feel.
Also, I can't wait to gift this book to the children in my life!
What an amazing post! I prefer listening to them, so I waited until I had the tim to give it my full attention. I got sick at 13 (juvenile arthritis) and was very angry & sullen at the time. Camp was never suggested to me as a kid, but I imagine my reaction would have been similar to Kirbi's. Then, as an adult, I got the opportunity to be a counselor at Camp Esperanza (the The Arthritis Foundation So Cal chapter's camp), and absolutely LOVED it. Went several years & made life-long friends!
Re: your chewy questions (which I always love, BTW):
I like the term "scrappy" - though it makes me think of a family friend's wonderful little rescue pooch. It was a great name for him because he'd been through A LOT but was still the loveliest little doggie. love the quilt analogy.
I think "apparent/non-apparent" is a good alternative to "visible/invisible" - not everyone has vision folks! My own disability is very visible, and yet some friends still like to say, "I don't think of you as disabled" and consider it a "compliment" - UGH.
Lastly, I wasn't disabled as a young kid (picture book age), but I still remember feeling like a misfit, alone in my uniqueness. One of my favorite, most relatable picture book stories was Dr. Seuss' The Sneeches. I SO related to being in the group with "no stars upon thars." I only hoped that, in the end (adulthood?), it wouldn't matter so much, like it the story.
Ahh, I'm so glad this conversation resonated with you, Karol! It's amazing to see these overlaps between your story and Kirbi's with the incredible experience of being a camp counselor. There really is something so powerful about this kind of togetherness, especially when we've grown used to feeling like the only one. I was never a camp counselor, but I definitely felt transformed being in rooms with people who understood life from this particular vantage point.
I'm so glad you're into the chewy questions! Scrappy is a great name for a dog, lol! And this is a great point you make about not everyone perceiving through vision! Another reason apparent/non-apparent makes sense.
Oh my gosh, The Sneeches! Yes! What a great example of the power of storytelling -- to feel that connection as a kid and also this bit of hope that things might shift when you grew up. I just finished reading Lidia Yuknavitch's book The Misfit's Manifesto, and she reflects on how she connected with the characters on The Island of Misfit Toys. I wonder if sometimes it's easier to connect to the characters who AREN'T human. Maybe they're able to capture a feeling that goes beyond language and explanation? Not sure. But I'm so glad to hear the thoughts this conversation brought up in you. Thanks for digging into it with us💛
Thank you so much. I wanted to know more behind “We Are the Scrappy Ones.” This interview gave me another dimension to it. There is so much I want to reflect on.
I was drawn to the discussion on visibility and invisible disabilities. Since not evertone can see what I go through, sometimes I want to say “Why can’t you see this”? But I also have benefited greatly from the invisibility because I have the choice to disclose it or not. However, when I get questions and decide to disclose, I felt like I had to explain a lot, more than I needed to. So I love Kirbi’s comment on balancing privacy and being who she is. Especially the concept of maintaining dignity was great. It also made me aware that visibility also carries other complications. I reflected and asked myself the question “Did I judge a person or make assumptions through it?”
Her view on art and that “it has offered this other avenue to life, to interacting with the world in a way that I couldn’t show up for a 9 to 5 job,” resonates.
I will be checking on the other resources.
This is truly a gift. I also want to thank you to Kirbi for her giving us this magical whimsical art and her wonderful presence.
Yes, you named some of the parts I’m still thinking about, too! This reflection on the differences between “apparent/visible” and “non-apparent/invisible” is so rich and important, and I like how you’re connecting that part of the discussion to privacy — how the ability to “hide” a disability invokes a different set of questions around privacy and self-advocacy with dignity. I’m so glad you enjoyed Kirbi’s whimsical art, too. Isn’t she lovely?? It was such an honor to get to talk with her for an hour. Thank you for taking the time to listen with this whole conversation and think it through here with me💛
Wow this was such a rich, generous conversation that I found myself taking notes. There's so much in here that I want to revisit. I have always loved the word scrappy and have described myself, both to myself and to others, as scrappy. This conversation makes me reflect on why and I think it has a lot to do with the fact that I view scrappy as making the best out of bad options. I love thinking of it as "powerful in your weakness." Resilience always made me flinch because it feels like something you're just supposed to BE. Scrappy has agency in it. Scrappy means I get to make choices, even if none of them are that great. I'm going to be thinking about this more. I also appreciated getting to reflect on bravery, on choice, on privacy and on creativity within limits. Thank you for this, Kirbi and Rebekah!
Ahhh, highest honor — taking notes while listening! I am so interested in the way you’re digging into the word scrappy, especially as it compares to resilient. I totally see what you’re saying about agency versus a state of being! There is an energy around the word scrappy — like when I picture it in my head it’s linked to some kind of action (even if that action is holding perfectly still on the outside). I am also still thinking about this notion of privacy. I was so moved watching the way Kirbi navigating talking about her younger self. Honored to have you reflecting on this one as I continue to turn it over in my own mind💛💛
THANK YOU BOTH SO MUCH I CONNECTED WITH THIS SO MUCH BECAUSE I HAVE HAD SOME OF THE SAME EXPEDIENCES ABOUT AC ACCESSIBILITY IN SCHOOL I WROTE AN ACCESSIBILITY EDITORIAL FOR MY HIGH SCHOOL THAT WAS BUILT IN RECENTLY, AND THEY DID NOT THINK ABOUT ACCESSIBILITY VERY MUCH WITH THE G.I. STUFF THAT YOU WERE TALKING ABOUT THE FIRST
Ahh I'm sorry the transcript wasn't working! I just adjusted the formatting, and it should all appear as plain text now. I hope?! Thank you for letting me know it wasn't working on your end. And thank you for your investment in the conversation and your kind words about the book! xoxo
I loved every minute. I look forward to hearing another conversation. You both show me the world you move through. Scrappy is a perfect word. I was very touch about "brave". In your story, brave looks very different. Thank you.
We can’t open the attachment in your comment. Could you please make it so that we can open it? I hope I can listen to this one soon along with the interview about your writing it! I hope I can do that with with the shirt of us on! Also, I sent you a picture us of me wearing a skirt of On 25 November, along with me holding up the thankful pumpkin! CONGRATULATIONS ON GETTING THE GO BIG READ FOR SITTING PRETTY IN KANSAS AND IN WISCONSIN! CONGRATULATIONS ON GETTING THE 18TH BEST BOOK OF THE YEAR! I AM STILL HONORED TO KNOW YOU! KEEP UP ALL YOUR WRITING AND ADVOCACY!
Oh no, thank you for letting me know, Lauren! Are you having trouble opening the audio recording? Or what part is giving you trouble? It makes me wonder if anyone else is having trouble accessing it, too!
And thank you for your enthusiastic cheers for the books! You're the best🥰💛
Okay, I went in and adjusted the formatting for the transcript! I don't know why it was appearing as an attachment, but I'm hoping it's fully accessible now! Thank you so much for letting me know it was giving you trouble, Lauren -- I really appreciate it. Let me know if it's still showing up weird! xoxo
Furthermore, I have a lot of thoughts about your rich discussion around the visible/invisible, apparent/non-apparent binaries which I agree are much more nuanced. As a lot of other people, I find my illness and disability to be somewhere between the two. I have dozens of scars, some of them huge, tubes and medical devices, I use a walker or wheelchair, however my most debilitating symptom is the severely excruciating pain which is invisible. That is if you don't notice me being doubled over, blue-lipped, gasping for air, struggling to speak, grimacing from pain etc.
I also find that it isn't a privileged-unprivileged binary either. One interesting this is that I clearly notice the huge shift in people's stares and unsolicited comments when I'm rarely out alone with my walker (it's different when I'm in wheelchair wheeled by my partner) depending on if it's winter and I'm thus "invisibly" ill/disabled other than the mobility aid or in summer where people can see my central line in the chest and tube in the stomach.
Yes, yes! I find that the times my visibility shifts (no mobility aids around or I'm accompanied by a partner) my experience in the world shifts, too, sometimes quite dramatically. And it's this weird reminder of the way so much of our visibilities/invisibilities operate as shorthand symbols for the ones observing us. I'm sure I participate in this, too, in ways I'm not very aware of, as much as a strive for the opposite. And like you, I don't find that any of those experiences create crisp slices on the privileged/unprivileged binaries. It's messy! And even as we can't pin it down, it feels good to try to sort out together what it means to us -- how we're different and similar. Like comparing field notes -- this is what I see, what do you see? What is it like for you? Thank you for being a part of that!!💛
I love the idea of sharing field notes! I find recognition and validation to be such a salve. Thank you for creating this space ❤️
Thank you both so much for this conversation, dear Rebekah and Kirbi <3 It hit so hard! One of the things that resonated the most with me (along a lot of things), was Kirbi's proclaim of: "So it’s like this thing that I was doing to keep myself going was also the thing that was preventing me from getting full care, you know?" in the context of fooling the doctors with your couragous smile. At 30 and being severely ill, that's still very much how I feel.
Also, I can't wait to gift this book to the children in my life!
What an amazing post! I prefer listening to them, so I waited until I had the tim to give it my full attention. I got sick at 13 (juvenile arthritis) and was very angry & sullen at the time. Camp was never suggested to me as a kid, but I imagine my reaction would have been similar to Kirbi's. Then, as an adult, I got the opportunity to be a counselor at Camp Esperanza (the The Arthritis Foundation So Cal chapter's camp), and absolutely LOVED it. Went several years & made life-long friends!
Re: your chewy questions (which I always love, BTW):
I like the term "scrappy" - though it makes me think of a family friend's wonderful little rescue pooch. It was a great name for him because he'd been through A LOT but was still the loveliest little doggie. love the quilt analogy.
I think "apparent/non-apparent" is a good alternative to "visible/invisible" - not everyone has vision folks! My own disability is very visible, and yet some friends still like to say, "I don't think of you as disabled" and consider it a "compliment" - UGH.
Lastly, I wasn't disabled as a young kid (picture book age), but I still remember feeling like a misfit, alone in my uniqueness. One of my favorite, most relatable picture book stories was Dr. Seuss' The Sneeches. I SO related to being in the group with "no stars upon thars." I only hoped that, in the end (adulthood?), it wouldn't matter so much, like it the story.
xo, Karol
Ahh, I'm so glad this conversation resonated with you, Karol! It's amazing to see these overlaps between your story and Kirbi's with the incredible experience of being a camp counselor. There really is something so powerful about this kind of togetherness, especially when we've grown used to feeling like the only one. I was never a camp counselor, but I definitely felt transformed being in rooms with people who understood life from this particular vantage point.
I'm so glad you're into the chewy questions! Scrappy is a great name for a dog, lol! And this is a great point you make about not everyone perceiving through vision! Another reason apparent/non-apparent makes sense.
Oh my gosh, The Sneeches! Yes! What a great example of the power of storytelling -- to feel that connection as a kid and also this bit of hope that things might shift when you grew up. I just finished reading Lidia Yuknavitch's book The Misfit's Manifesto, and she reflects on how she connected with the characters on The Island of Misfit Toys. I wonder if sometimes it's easier to connect to the characters who AREN'T human. Maybe they're able to capture a feeling that goes beyond language and explanation? Not sure. But I'm so glad to hear the thoughts this conversation brought up in you. Thanks for digging into it with us💛
Rebekah,
Thank you so much. I wanted to know more behind “We Are the Scrappy Ones.” This interview gave me another dimension to it. There is so much I want to reflect on.
I was drawn to the discussion on visibility and invisible disabilities. Since not evertone can see what I go through, sometimes I want to say “Why can’t you see this”? But I also have benefited greatly from the invisibility because I have the choice to disclose it or not. However, when I get questions and decide to disclose, I felt like I had to explain a lot, more than I needed to. So I love Kirbi’s comment on balancing privacy and being who she is. Especially the concept of maintaining dignity was great. It also made me aware that visibility also carries other complications. I reflected and asked myself the question “Did I judge a person or make assumptions through it?”
Her view on art and that “it has offered this other avenue to life, to interacting with the world in a way that I couldn’t show up for a 9 to 5 job,” resonates.
I will be checking on the other resources.
This is truly a gift. I also want to thank you to Kirbi for her giving us this magical whimsical art and her wonderful presence.
Yes, you named some of the parts I’m still thinking about, too! This reflection on the differences between “apparent/visible” and “non-apparent/invisible” is so rich and important, and I like how you’re connecting that part of the discussion to privacy — how the ability to “hide” a disability invokes a different set of questions around privacy and self-advocacy with dignity. I’m so glad you enjoyed Kirbi’s whimsical art, too. Isn’t she lovely?? It was such an honor to get to talk with her for an hour. Thank you for taking the time to listen with this whole conversation and think it through here with me💛
Rebekah,
Yes. Kirbi's art is so lovely. She was the perfect artist to do this book with you. Thank you both for this conversation😊💛
Wow this was such a rich, generous conversation that I found myself taking notes. There's so much in here that I want to revisit. I have always loved the word scrappy and have described myself, both to myself and to others, as scrappy. This conversation makes me reflect on why and I think it has a lot to do with the fact that I view scrappy as making the best out of bad options. I love thinking of it as "powerful in your weakness." Resilience always made me flinch because it feels like something you're just supposed to BE. Scrappy has agency in it. Scrappy means I get to make choices, even if none of them are that great. I'm going to be thinking about this more. I also appreciated getting to reflect on bravery, on choice, on privacy and on creativity within limits. Thank you for this, Kirbi and Rebekah!
Ahhh, highest honor — taking notes while listening! I am so interested in the way you’re digging into the word scrappy, especially as it compares to resilient. I totally see what you’re saying about agency versus a state of being! There is an energy around the word scrappy — like when I picture it in my head it’s linked to some kind of action (even if that action is holding perfectly still on the outside). I am also still thinking about this notion of privacy. I was so moved watching the way Kirbi navigating talking about her younger self. Honored to have you reflecting on this one as I continue to turn it over in my own mind💛💛
THE FIRST TIME I READ THE BOOK, I STARTED TO CRY BECAUSE IT MEANT SO MUCH ME!
It means so much to me to know the book means so much to you🥹💓
THANK YOU BOTH SO MUCH I CONNECTED WITH THIS SO MUCH BECAUSE I HAVE HAD SOME OF THE SAME EXPEDIENCES ABOUT AC ACCESSIBILITY IN SCHOOL I WROTE AN ACCESSIBILITY EDITORIAL FOR MY HIGH SCHOOL THAT WAS BUILT IN RECENTLY, AND THEY DID NOT THINK ABOUT ACCESSIBILITY VERY MUCH WITH THE G.I. STUFF THAT YOU WERE TALKING ABOUT THE FIRST
I’m so glad the conversation resonated with you, Lauren!!💛
I can’t do audio, but would love to read the transcript if you can get it to attach. Congratulations on the book and its success!
Ahh I'm sorry the transcript wasn't working! I just adjusted the formatting, and it should all appear as plain text now. I hope?! Thank you for letting me know it wasn't working on your end. And thank you for your investment in the conversation and your kind words about the book! xoxo
I loved every minute. I look forward to hearing another conversation. You both show me the world you move through. Scrappy is a perfect word. I was very touch about "brave". In your story, brave looks very different. Thank you.
Oh, I'm so glad to hear this Debra! Thank you for taking the time to be with this conversation. It means a lot to hear these reflections💛💛
I adore you and Mazel on making that Best of List!!!
Thank you, friend!!!💛
We can’t open the attachment in your comment. Could you please make it so that we can open it? I hope I can listen to this one soon along with the interview about your writing it! I hope I can do that with with the shirt of us on! Also, I sent you a picture us of me wearing a skirt of On 25 November, along with me holding up the thankful pumpkin! CONGRATULATIONS ON GETTING THE GO BIG READ FOR SITTING PRETTY IN KANSAS AND IN WISCONSIN! CONGRATULATIONS ON GETTING THE 18TH BEST BOOK OF THE YEAR! I AM STILL HONORED TO KNOW YOU! KEEP UP ALL YOUR WRITING AND ADVOCACY!
No it’s not the audio it’s the attachment that you put in your first comment. Also you are SO welcome
Oh no, thank you for letting me know, Lauren! Are you having trouble opening the audio recording? Or what part is giving you trouble? It makes me wonder if anyone else is having trouble accessing it, too!
And thank you for your enthusiastic cheers for the books! You're the best🥰💛
The attachment that you put in the comments.
Okay, I went in and adjusted the formatting for the transcript! I don't know why it was appearing as an attachment, but I'm hoping it's fully accessible now! Thank you so much for letting me know it was giving you trouble, Lauren -- I really appreciate it. Let me know if it's still showing up weird! xoxo