Title:
Kam Redlawsk | From Monsters to Masterpieces, The Art of Healing

Subtitle:
How Kam Redlawsk’s Inner Monster Became a Symbol of Outward Strength

Transcript:

Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice each week. We will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths. Let’s go.

Welcome back to pushing forward with Alycia. I’m Alycia Anderson. We have. An amazing artist on the show today.

She is Los Angeles based daydreamer and chaser of inspiration. She’s an artist, a writer. Her name is Kam Redlask. She shares and illustrates moments of her life living with a rare and degenerative muscle wasting disorder which is going to take her mobility away completely. I believe we’re going to talk about that. She is a self taught illustrator and an artist who primarily centers her work around the experience of living with disability and rare disease. She’s an advocate. she has been a voice. for rare disease and the disabled community for a very long time, I think over 15 years, and I saw some illustrations called chair devils. And I had never, ever seen Any type of illustration like this in all of my life of living with a disability that I instantaneously started following you. And then here we are.

Thank you so much, Kam, for gracing this podcast with your presence. It’s, it’s my absolute pleasure and privilege to meet you.

Kam Redlawsk: Thank you for inviting me. It’s really nice to meet you.

Alycia Anderson: So let’s look back a little bit if we can, can you tell us a little bit of your back story? Who are you? Where did you come from?

Kam Redlawsk: so I’m Kam and I was actually born in Daegu, South Korea, which is the third largest city in South Korea.

And, I’m an adoptee. when I was born in the maternity clinic, I was abandoned at birth. I was subsequently sent to a, convent actually for a couple of weeks while they, I think it was to wait to see if my biological mother was gonna come back. in the meantime, they found me an orphanage to live in for about four years. And when I was about four years old, a Michigan family, a white family, who already had three boys had sent to adopt me and I flew from Korea to Chicago to meet my new parents at the airport and they lived in Michigan. So we would fly, we would drive from Chicago to Michigan.

Yeah, I, had a pretty typical upbringing. I had three brothers. I was really active in sports and it was very different than Korea. But, I think so much of my life has been shaped just from, the origin of me not having a family, to begin with, I think that has informed so much of my life and viewpoint, right from the beginning of being different and and knowing that everybody has a similar story or knowing that a lot of people are alone.

I think that’s something that has really been Very central to who I am. And there’s always been this kind of like loneliness that I felt from being an adoptee and orphan. And I think that’s really informed way of interacting with the world and people and how I care about, people in terms of how they feel and empathetic and do they feel lonely and just the struggles and difficulties they feel in life.

So I think that’s something that’s just always been naturally ingrained with me is this just natural sense of. Being able to scope out people who felt similar to me, who felt alone and different.

Alycia Anderson: Wow. What age were you diagnosed with your, how do you identify?

Kam Redlawsk: I sometimes call it a rare disease.

Alycia Anderson: Rare disease. Thank you. That is the term. can you tell us a little bit about that journey?

Kam Redlawsk: Yeah, so I got my official diagnosis when I was 23 in 2023. I was going to college, I but really it had began, I had played soccer for about 13 years.

It was like one of my favorite sports and I grew up very much a tomboy. And then I noticed around 15, I was a freshman, , in high school soccer playing and something was changing and different and it pretty much happened throughout entire time in high school as a soccer player. And then when I became. a senior and I was a varsity soccer player. I had been cut from the team and there was just this whole process of something happening with my body where I felt like every time I would try to kick, my body wouldn’t follow through and listen.

It was just becoming more of a problem. I was having what’s called foot drop, my, where my ankle was dropping my foot. It was just too weak, where I was basically dragging my feet as I was walking. So I would express this to my parents and doctors and my family doctors and nobody believed me.

And then when I was about 19, I realized there was definitely something wrong. And I took my own initiative and became my own advocate. six diagnosis later, I was diagnosed with an extremely rare form of muscular dystrophy called GNE myopathy and it’s genetic and it’s progressive and It has pretty much, , led to complete immobility, where my legs were affected first and I couldn’t walk or stand. And then my arms degrading as well. So now I can’t raise my arms or move my hands or you know, feed myself or things like that. So, yeah, it’s, it’s pretty much 15 and I’m 45 now.

So it’s been a long journey.

Alycia Anderson: Have you met anyone from your birth family that has the same condition?

Kam Redlawsk: that’s a really good point because that’s like my first time I really felt wait a minute. There was like a tangible. on my past biological parents. I’ve never met meaning like passed this to me. They were carriers, both of them, but they didn’t have the disease like me where it’s expressed in term disability. They passed it on to me and mine expressed in terms of disability. Yeah.

Alycia Anderson: I think the advocacy, I know the advocacy work that you’re doing with rare disease, chronic illness, all of that. it’s become louder and louder and more prominent in the conversation, I think, than ever before. And your advocacy is incredible.

You are a traveler, you’re an artist, you are a writer, how did your rare disease. Kind of inspire your illustrations and the work that you’re doing today.

Kam Redlawsk: I’ve always been creative, but my training was in. Industrial design, which is more utilitarian, like you’re sketching shoes or cars or sunglasses or wheelchairs or whatever it may be. But I’ve always had some kind of background in drawing. But how it happened was, I came to California with no job. And I landed a job with Mattel toy company and I started designing toys and I had Googled my disease many times, but for some reason I did it again and I just happened to find these two brothers who have the same condition as me and they had started a nonprofit to spread awareness and start treatment development.

So that’s kind of really in 2006 how I accidentally fell into advocacy. So I, Created a branding campaign for this nonprofit learning that the disease is mostly known in the Jewish Persian community. It’s most common in that. And the second most common is Japanese genetic mutation, which is what I have. And it’s how I realized I was part Japanese. In the process, I realized people don’t respond to, medical jargon or names of diseases, or we’re inundated with it all the time. So how do you get someone to really care? And that’s when I started being more personal. And I started a blog. I was the first person with my disease in the world to blog about my condition because it was still fairly new.

And most people were not public or out because genetic diseases in many cultures are considered shameful. So a lot of people stay in hiding, like in Persian community or Asian community. And then I started a sketch. I just did a little doodle and I realized, you know, people, not everyone likes to read, some people respond to things differently especially something so complex as a disability or a disease, where it’s something that people can’t really understand.

So I started drawing and started identifying and responding to my disability. So that’s how I kind of emerged who I really am. So I could really do what I care about in the way I care about it, such as being creative, also continue advocating. So I think doing the art has really impacted way it’s different.

Not a lot of advocates do art and I’ll share this one particular story that’ll give a a picture of how disabled people have. to it. There’s this one illustration I did called, monster and me, which is now becoming a children’s book. I portrayed my disease or my disability as this really rare as this really cute little forlorn monster who doesn’t know why I don’t want him with me. He’s just knows that he has to follow me.

That’s what it was designed for. I had one of his followers reach out to me and say, you know what? I. When I saw your drawing, it made me realize that it’s a relationship that I have with my condition. She says, I’m bipolar and I go to church and I don’t even like to tell anyone in church because I’m so embarrassed or in fear of what people are going to think about me and I’ve been suicidal and all sorts of things you’re sharing with me. And she said, but your drawing made me realize that, wait a minute, this is me. This condition is me. And it is a part of me and it’s a relationship. So she, started seeing her disability differently from then on. So that’s just like the way I feel like being creative is just, it hits different people differently and it’s been very rewarding to be able to do something creative and have it mean something to someone else.

Alycia Anderson: That is the most beautiful story. And that is so beautiful that you’re illustrating. A way for people to find a path forward to have a relationship with who they are.

Did I read somewhere that you were not? You are not an illustrator initially at all. Is that true?

Kam Redlawsk: Yeah. I’m self taught.

Alycia Anderson: That reminds me of Frida Kahlo, how she started becoming an artist with her disability, and started painting on the bus to her cast . Is there any other visuals or examples or descriptions that you can give our listeners?

Kam Redlawsk: Yeah.

So I think what guided the artist effect really was functional, meaning I wanted to connect with people and I wanted to do it in a different way than besides writing and an extension of myself to creative. So I think that definitely influenced it. And it kind of just has taken a life of its own.

I’d never expected to do much with it, but all of my art, everything I draw is definitely, directly. or related to my disability and my rare disease and more so the emotional journey that one experiences with it, whether it’s based on an accident where it’s sudden or you are a child and You’ve always had it or whether You just suddenly become disabled and you have to learn how so in a lot of ways for me, drawing this art, a lot of my art is surreal. And as I’ve gone through as a self taught illustrator, I’ve explored different styles. The style really depends on what I’m doing. Because I’m not like a trained illustrator, I’m not extremely good at character drawing where I can draw the same character in many views. So I find in all of my art, they’re slightly different.

There’s never the same character. But all the characters are always me, it’s always a girl, whether it’s a little girl in like a children’s book type of illustration or more of a surreal, depiction with a woman. And I found even my own self, I’ve learned so much about disability just by seeing what comes out of it. And all of them are related to definitely visibility, which I think is so important. I so I think a lot of the problems with ignorance is visibility.

And so I, I’ve, I’ve really wanted to dedicate anything I do in creative world is related to giving some kind of visibility to a disabled person. So whether it’s in my surreal art. Where there’s a wheelchair in the image, or whether it’s chair devils, or whether it’s Monster and Me, which is really about showing the disabled experience and the journey to acceptance through it. So yeah, it’s, it’s really wonderful to be able to communicate something that can be difficult, but to express it, see some brevity and some creativity and hopefully we’ll reach different people in different ways. Not even if you’re disabled, you know, if you’re just having like you have addiction, you have struggles, whatever it may be. We all have something that’s following us.

Alycia Anderson: And you’re a very good storyteller. Your art does. It pulls you in and do an emotion and you’re very talented. How has.

Your, rare disease, your positioning in life, your influence, your approach to design, is that all embedded together?

Kam Redlawsk: So I had my sophomore design class, I had chosen a wheelchair. To redesign And I noticed the utilitarian aspect approach to design whenever it was something related to a disabled person.

So this was like. Back in 20, 2002, right? This is when people really talking about design and stuff. And all they could say was, you know what disabled people like, and I haven’t even met another disabled person by this time, but I said, you know what, I’m the same person I was before the disabled disability.

I like design. And so does all the disabled people. the typical thinking is that we don’t like anything cool, we want to be just as cool as everyone else. so that was one of my major projects was trying to pitch to a lot of companies that just planting the seed of the idea is like, you guys don’t have to stop short of design when it comes to disabled or disabled products. I see design with so much more potential and, an innovation and more than a lot of people do that are not disabled and just a very simple example that I always share is that when we look at an incline, for example, for a wheelchair. typically is right next to like two or three little steps.

They’re like right next to each other on a sidewalk. I’ve seen this and you see this segregation of design. Then you realize you don’t actually need those two little steps at all. You just have an incline and that serves everyone. You can create design that fits a lot of groups. You just have to think a little bit bigger. It’s like my mind’s eye is always looking at accessibility and ways to design things. That doesn’t make it look like you designed it for a disabled person. You just designed it smarter and thus it is able to fit on people.

Alycia Anderson: And eliminate the segregation of design. So I’m not from the design world. I don’t think I’ve ever heard that term. And inclusive or universal design is, is amazing. so you’ve been an advocate for over 15 years. What are some of the key projects that you’ve been involved with?

Kam Redlawsk: Yeah. Some of the key projects are like doing that complete branding campaign of that nonprofit. , I ran a six five year project called bike for Kam on my friends bike from, San Francisco to LA and we raised , 50, 000, 50, 000 for research. And then last year I rode with them. We built a little plastic cart that could attach to the bike and my friends bike me down through Big Sur, PCH. A couple of other things. I’ve done a lot of art things where my art is covers the walls. It’s mural art and rare disease, medicine agency for treatments for rare diseases.

They focus on treatments. And so they asked me they used a lot of my art, I won a competition with a lot of people don’t know it’s called power to the patients that a couple of years ago, there was a law passed where hospitals are supposed to list their prices now, but they still don’t.

So there was a whole awareness campaign with some celebrities and artists like obey giant. they did an art campaign and I, I did an art poster for them for that to raise awareness. So a lot of little things like that, just I bounce around,

Alycia Anderson: So you mentioned earlier too, the children’s book.

Kam Redlawsk: So I mentioned a little bit earlier when we were talking, but basically what happened was in 2012, I had fell and my husband was working an hour away, so I had to wait on the floor an hour. I got to the stage of the disease where I couldn’t. Get myself up anymore after I fell. So I was laying there waiting an hour for my husband to come home, to come pick me up. And I remember seeing this gray furry foot and it, and to me in my mind, it was like, that’s the cause of all my, , physical woes and falling all the time was this, , gray monster that I saw on YouTube. So I went and drew him and it’s taken years, but it’s finally become something.

But the idea was he represents my disability, my rare disease, GNA myopathy. And I really wanted to present him as this cute, forlorn almost like puppy dog creature, or monster. Of course, he represents disease and disability, so it’s a fine balance of like, I want not people to view disability as a monster, he’s just this cute, , thing that follows me. So how do we make this into a relationship? And this story, I think it’s kind of timely in a lot of ways, because I think the advocacy has been great for disability, but lot of it is focused on purely on empowerment angle. And there’s also this other side of disability life that I don’t think is shared as much. And I think that’s because people don’t want to come off like weak and they don’t want to show that, hey, you know what, disability can be difficult and it’s difficult for everyone in different ways. really want to show the, There’s this other side of advocacy that people who are newly disabled or have been disabled for years, decades, and still have not found the path to acceptance. talking about like, how do we also have our own path of acceptance with ourselves and with our condition and having empathy for ourselves and realizing, you know what, this is a journey and this is a new part of me, but It may not, I’m going to have struggles with it, but I want to accept myself to the level of I’m going to still live my life and realize I’m, worthy and, for, equal access and all these things.

Alycia Anderson: I love that. And you’re right. a lot of the advocacy. And we’re almost taught or it’s embedded in us to hide the things that are hard, embarrassing, tough may look, make us look weak.

This type of book is allowing us to have the representation.

And I think that’s really beautiful. So, wow.

Kam Redlawsk: Yeah, and in the end, it’s really having empathy for yourself, because I don’t think we realize, because we don’t accept it, and acceptance doesn’t mean, just like disability pride, it doesn’t mean that we’re with disability all the time, and I think sometimes that narrative is sold. Right. And the empowerment stage.

Alycia Anderson: Wow. Oh, I can’t wait to buy this book and for all of my nieces and nephews and one right by my bed. Oh my gosh. I cannot wait.

Um, do you want to talk about the chair devils at all and how that started?

Kam Redlawsk: I’m doing some consultancy for a PBS children’s show that does show a disabled character, so, we started doing these little TV inspired Japanese TV inspired characters, showing all the different flavors, you could be into sports, you could be a writer, you could be a teacher, you could be anything, you could be a mom, you could be a parent, you could be a podcaster, you can be an artist, and so it was just more of like a fun, lighthearted and, and, and then we would choose some advocates and do their likeness as a, as a chair devil TV character. So eventually we would like to pitch it as a show, like a little TV show, but I just haven’t had time.

Alycia Anderson: That’s pretty motivating. So do we forget anything?

Kam Redlawsk: Just continuing. I really want to

Alycia Anderson: So

Kam Redlawsk: I’m a part of a, an installation with Ron Finley. He’s an artist in LA at the Hammer Museum. But I really want to do installation art.

I think there’s a way to communicate disability. that. But yeah, just a lot of more creative venues. And I think that’s the thing that keeps me going is if I didn’t have creativity and my projects and vision and looking forward to something, I think that’s something that I always recommend to people who are struggling I’m struggling all the time. I don’t ever want anyone to know or think that I’m like, okay, with everything that’s happening all the time. But I think what’s important and what’s helped me is keep your eye on it. A project or something moving you forward. and that’s been my saving grace. It’s helped so much there’s been a lot of difficulties with this and I think that’s the thing that’s always bringing me back is something that I can do just so just focus on What you can do and you’ll find out that you’ll be doing a lot.

Alycia Anderson: I think that’s pretty perfect. We always end with a pushing forward moment, some inspiration for our community. But I love that goal of having something in front of you, a goal and keep. Aiming towards it to keep you motivated and inspired.

Is there another one?

Kam Redlawsk: No, I think that’s a

Alycia Anderson: I think it was really good. I’m like, wow, she’s hitting the pushing forward moment perfectly.

Kam Redlawsk: Yeah. Oh, yeah, right matches your title.

Alycia Anderson: Kam, thank you so much for your time. It has been my honor to follow your beautiful work and your path. And you’re teaching all of us as disabled people and beyond how to be pretty powerful.

So thank you for doing the work that you’re doing. It’s my pleasure to meet you.

Kam Redlawsk: Thank you. Thanks for having me in For everything that you’re doing as well

Alycia Anderson: Thanks. We’ll leave all of your amazing information so everybody can start to follow you, hire you for art, speaking, all of the things. And thank you to our community for showing up again this week. This has been pushing forward with Alycia and that is how Kam and I roll on this podcast. We will see you next time.