Katy Sullivan:  I really had to learn, at a very young age, how to adapt to a world that was not made for me.

Jay Ruderman: Hi, I’m Jay Ruderman and welcome to All About Change, a podcast showcasing individuals who leverage the hardships that have been thrown at them to better other people’s lives.

[show intro]

Jay Ruderman: And today on our show, Katy Sullivan.

Katy Sullivan: I always say I had the tremendous fortune to be born to a set of parents that looked at my circumstance as, okay, this is what is.

Jay Ruderman: Katy Sullivan is an award-winning TV and stage actress, producer, writer and paralympian. She was born as a bilateral above-knee amputee. Her family welcomed her with open arms. In fact, they didn’t make a big deal of her condition.

Katy Sullivan: “Let’s move on. Let’s move on with things like we got, we got places to go. We got stuff to do.”

Jay Ruderman: While growing up, her parents encouraged her to try everything and, eventually, she fell in love with and pursued acting.

Katy Sullivan: People who have the experience of being.. either becoming disabled at a young age or being born disabled, our level of adaptation is pretty next level.

Jay Ruderman: Katy never considered herself an athlete, but after she got her first pair of running prosthetics at 25,  she discovered that she loves to run. Almost by accident, she found herself on a path to becoming a four-time US Champion and was among the first bilateral above-the-knee amputee to compete in the Paralympics during the London 2012 Paralympic Games. But despite her successful sports career, she never lost sight of her dream to become an actor. Among her many acting accolades, Katy has recently made history again. She developed and starred as Annie in the hit show “The Cost of Living” – turning her into the first amputee to star on Broadway.

Katy Sullivan: I’m humbled and it’s amazing. And we need more of this, please. But, on the other side, it’s like, it’s 2022. Like there’s never been an actress who’s an amputee on Broadway. Like why is that?

Jay Ruderman: Katy, welcome to All About Change. I’m really excited to have you as, my guest today and we have so much to talk about.

Katy Sullivan: Same. Likewise. This is exciting.

Jay Ruderman: You were born without the bottom half of your legs. And can you just tell the story, as you know it, from your parents of how they reacted once you were born?

Katy Sullivan: That’s from my perspective? No. I was there, but I wasn’t completely there, if you know, but, um, no, my mom had a normal pregnancy. It was, there was nothing to indicate that anything was different about me or what was going on with me. I have three older siblings and all of them were born totally normal, you know, physically normal.

So there was no reason for her to be concerned or worried. And no one in our family, none of this had happened to anybody in our history. And it was a little bit before they did ultrasounds on every baby. So, it was when she was in labor and she was having a C-section because she had had previous C-sections, she heard one of the nurses go, “Oh my god.” And they were like, “We’re just gonna give you some oxygen.” Like, so they put “oxygen,” I’m using air quotes, and they basically like knocked her out. And it was when, she woke up in recovery that my dad was there and, I was not. And she was like, what’s going on? Where’s the baby? And my dad, um, who was a physician, he said She’s healthy. She’s, she’s okay. She was just born without the lower halves of her legs. And she just was sort of like, “Bring me my kid. Like, what is wrong with you? Like, where’s the baby? Where is she?” And so, I really, I always say I had the tremendous fortune to be born to a set of parents that looked at my circumstance as, okay, this is what is, and we have soccer practice to get to, or swim practice, or whatever it is that the family had going on. And the fact that I had a limb difference from birth, was part of our experience, but it wasn’t what made up everything that we had to focus on all the time. And I think their example of just sort of pick up and go is why I sort of developed an attitude of let’s move on. Let’s move on with things like we got, we got places to go. We got stuff to do. And so, we were busy. Like my sister was, a tremendous swimmer and she was constantly going to twin swim meets. And, my older brother was super into soccer and he wanted to, you know, I just wanted to do the kinds of stuff that they were doing. My sister was a cheerleader, so for a long time when I was a kid, I took gymnastics, which was fine to a point until to go up a level you had to get your back handspring. And I don’t know how anyone does the back handspring without calves. so sports really became frustrating to me and I started to kind of look for other outlets and other things to be a part of that I didn’t have to be a competitive athlete to be a part of.

Jay Ruderman: But you were never discouraged by your parents or your siblings from being included. In fact, I think you’d said that you were also teased by your, by your siblings growing up that it was a normal childhood.

Katy Sullivan: They never treated me like I was different or that I was made of glass. Like, we grew up in Alabama and where we lived had a lot of like, kind of wild area. And my brother would throw me on his back and we’d go trampling into the, you know, going into the like woods or whatever. And so, I really had to learn at a very young age, how to adapt to a world that was not made for me.  And I think that that’s pretty true and pretty common of people who have the experience of being either becoming disabled at a young age or being born disabled, our level of adaptation is pretty next level because we’ve just had to do it since, the day we were born or the day that this onset of whatever it is.

[Excerpt from 2012 Paralympic Trials]

Jay Ruderman: You did not run until you were 25 years old. And then your running career sort of took off.

Katy Sullivan: I mean, honestly at some point it was sort of, would this interest you? Would you wanna try this? And for me I was like, for sure I’m an actor. Like, it’s important to be fit and like feel strong and healthy that was my only intention, with getting the running blades. And, I had no muscle memory for running because I was born without them, without my legs. So I would sort of bounce on each foot twice and, I, like, my brain understood running, but like, my, the mechanics in my body were just like, we have no idea what you’re asking us to do. It took me a while to even just figure out how to put one foot in front of the other quickly. Like, that in itself was a big challenge. I went to a track meet for fun. Um, I had been running for about two months. And there was a track meet that my prosthetist was like, “The company will pay. Let’s go. You can just run a hundred meters.” And it was at that track meet that a Paralympic track coach, Joaquim Cruz, he’s still the ambulatory track coach for the Paralympic team. He saw me at that event and he was just how serious about this are you? And I was like, “Not at all. Like, not at all.” But he kind of planted this seed and it truly was at a point where there was not a lot going on for performers with disabilities.

And it just sort of opened a space and made way for me to focus on fitness for a little while. And, uh, you know, being a kid born without legs, I didn’t know that I happened to be quick. But it really became a passion. And again, it was just sort of like the worst thing that can happen is that I don’t make a national team.

And I landed, I, I was slated to go to the Beijing games in 2008 and I got hurt when I was, uh, a week away from the national trials for two, for the 2008 Beijing games, and you had to compete in the trials to make the team. And I fell and I hurt myself really badly. And , I always say, be careful what you wish for because, at my first track meet, I turned to my prosthetist and I was like, “Can I just sing the National Anthem? I would rather do that than run this race.” And I had already committed to singing the national anthem at those nationals. And, it might have been the slowest national anthem ever sung because I was on some pretty heavy painkillers, uh, and then I sat in the stands and I watched my hundred meters run past me with just tears rolling down my face because, I knew what I had put out in the world, and I saw it disappear right in front of me. And I, you know, I licked those wounds for a while. Like I couldn’t, I definitely couldn’t run for a while. I got strong again in the pool. I had to take all of the weight off of my back to be able to exercise. So, it was when Beijing was far enough in the rearview mirror and London was close enough in front of me for me to go, yeah, uh, this is something that I want, this is a, this is something I want to try to accomplish. It was, uh, 2012 that I was kind of like, this is sort of my last shot. And I trained and worked hard and, made it to the London Paralympic games and set an American record in the hundred meters, and ran a personal best. And, you know, it was just extraordinary.

Jay Ruderman: That’s awesome. And, and I, I believe that the, the London Olympics were maybe the first time where the Paralympics were really sort of out in front and really got a lot of, uh, spectators and a lot of interest. That must have been amazing.

Katy Sullivan: It was… it’s sensory overload. London was the first time that the Paralympics have ever sold out. And track is a marquee sport, so like everyone wants to go see track and field. And to stand in that place wearing a jersey that says United States of America. Like who gets to do that? Like not very, like you said, not very many people get to have, you know, especially in the entertainment business, the, the success I have. But I would deem to say that fewer people get to wear their countries Jersey and represent them at you know, at the Olympics or the Paralympics. It’s a, it’s a pretty small, band of humans,

Jay Ruderman: Do you design your own prosthetics? I mean, in terms of like fashion?

Katy Sullivan: I think this influx of like 3D printing has really come into the world and, and the world at large. I’ve started working with, a, uh, a company called UNYQ, and they do 3D printed prosthetic covers. In the past, I’ve just sort of taken the kind of robot vibe and then styled around it. But now, it’s gotten to the point where I get to make a choice about also not just, “What am I wearing? What are my shoes?” But like, ” What did the prosthetics actually look like?” Which is really exciting. And I feel like. it’s figuring out how to make them feel feminine because I feel like, for the most part, they’re, it’s metal and it’s hard. And it’s like, how do you take something like that and try to figure out how to make it look, feminine and sexy and soft in some way? It’s a cool time. Who knew that 3D printing would be the thing that’s like, “Oh, no, no. We can, you can do all sorts of crazy stuff and you just put it, you know, it’s a cover?”

Jay Ruderman: So let’s talk about becoming an actor or your desire to become an actor, which started very, very young.

Katy Sullivan: I always loved to sort of perform. I feel like I was born singing, song music really was my sort step into that world. I sang in, in the choir at church and things like that. And I just loved singing. I loved performing. And I went to see a children’s theater production of Charlie and the Chocolate Factory when I was in elementary school. The girl who played Violet, the little girl playing her went to my school. She was a couple years older than me, but she went, she went to my school and it was like seeing your best friend on Broadway. I mean, it was literally like, “Wait, this is possible. I know her. If she can do this, I can do this. Why can’t I do this?” And that really was kind of the beginning of me just sort of saying, “Yes, that, whatever that is, I want to do that.” And I, I went to my first theater audition at 12.

Jay Ruderman: When you said, Hey, I wanna be an actor, what was their reaction?

Katy Sullivan: I don’t think they really got it. And I think that they thought it, maybe just something to do for fun on the side or and even when I was like auditioning for colleges and went to a conservatory, my dad, even to that day was like, yeah, do this. Like, go. But he really wanted me to sort of have a backup plan. Like, he really wanted me to like perhaps get a teaching certificate while I’m in college.  No, he was a sensible person. I was a 17/18 year old that was like,”No, my dreams are gonna come true. Hold my beer I’m doing this.” Whether that was sensible or not is up for debate.

Jay Ruderman: Did you ever try to hide your disability?

Katy Sullivan: For a long time I called it the art of blending in. If I have cosmetic coverings over my prosthetic legs and I wear, you know, a nice pair of like pants or loose, you know, loose jeans or something like that, you may notice that my gait is a little different. But, like, it will almost looks like I hurt my ankle or something. Like, it doesn’t, it’s not, it’s not so noticeable. But I always felt like I always felt like I was walking into an audition or into a situation where I felt like I had a secret, and it was like not a good secret to have because you’re terrified of what they’re gonna ask you to do

In college, I never played disabled in college. I only wore, you know, I played Hedda Gabler in college and I had a corset and a bustle, and like, it didn’t matter. And my earliest jobs out of college were, you know, my first like equity jobs and things like that. In Chicago, actually, where again, it was like Oscar Wilde, so it was bustles and corsets and long dresses and things like that. And it didn’t, it didn’t matter. But it was when I moved to LA that you really had to, sort of, find a box. There have been times that it’s been like long stretches where nothing was going on for performers with disabilities. And then there’d be like one show and you’d be like, Huzzah!, I’m on My Name is Earl. And then you, you know, pray that something else happens, but it takes another three years for else to happen.

[Excerpt From Cost of Living]

Jay Ruderman: I want to talk about Cost of Living and congratulations on the huge success and, and the Pulitzer. I understand that it was a very difficult role for you to play.

Katy Sullivan: The first time I read the script was almost seven years ago now. It was six. When we started the Broadway run, it was six and a half. And it scared me to death. And part of that was her vulnerability, the fact that this woman has gone through so much. I knew it was going to be emotionally difficult to play this part. And myself as a performer, as an actor, when something shakes you that hard, to me that is an indication that it’s probably something you should try to do. To push yourself out of your comfort zone artistically. Because most of the time you’re getting to do like a guest star on this cute little sitcom or whatever. The times for you to really stretch and push yourself as an artist.

Are those times where you are like, wow, I’m really intimidated by this. And, to me, that’s an indication that I should probably give it a try. Cost of Living itself is a four-person play, and it’s two storylines and it’s really kind of a person who needs care and a caregiver and a person who needs care and a caregiver.

And you don’t know how the two stories relate until the very end. My side of the storyline it’s a couple who have separated and they’re getting divorced and, during their separation, she has a car accident. And she becomes, in our world, she became a quadriplegic, but also, uh, due to sepsis, she loses her legs.

She’s in a wheelchair. I have very little mobility. Every single time, the scariest moment for me in the whole show was the moment before I wheel out on stage. because of that vulnerability.

Annie is in a wheelchair. She doesn’t use prosthetics. So incredible amount of vulnerability coming from me to play that part. And then, there’s a scene in bathtub where the last of the play, I lay in a bathtub for about 20 minutes and we, the whole scene, basically all you see is my neck and my head. And, we had to figure out, sight lines and stuff. And so added bubbles to the bathtub, which also complicates everything because it’s not just water, then you’re dealing with bubbles, and like, but like, the bubbles did add a layer, I mean, a literally a layer of danger because of, my character, there’s kind of an accident, you know, in this bathtub. And, it is scary. It is scary and, and Martina, the brilliance of Martina and her writing and the brilliance of using a performer with a disability in that role.

There is a moment where the audience genuinely does not know if the character is in trouble or if Katy is in trouble.There is a real moment in the theater of people being like so startled and uncertain if that is real, if it’s planned. And I don’t know if an able-bodied person was playing that role, I don’t know that people would’ve had that same visceral reaction which is a brilliant, brilliant, brilliant reason to kind of demand for more authenticity.

Jay Ruderman: And how do you feel about inspiring others?

Katy Sullivan: It’s challenging at times because it feels, actually it was Lena, Waithe who was talking about, she’s a, an Emmy-winning writer and actress and she’s LGBTQ. And no, African Am- or women of color, who’s also LGBTQ had ever won an Emmy before for writing. And she was saying that she was sort of this reluctant flag bearer of like, and saying that like she didn’t realize that she was who she was waiting for. And, I didn’t realize this going into rehearsals or anything like that. It was when I started doing press, actually, that my publicist made known to me that I was the first actress who was an amputee to ever be on Broadway, like, Ever.

That’s unbelievable. I mean, I remember the first Broadway show I ever saw. I was 17, I was on a school trip and my school, we went to see three Broadway shows. And the first show I ever saw, curtains going down, like end of the show. And I just start sobbing, and, um, my teacher actually, I’m standing on the street, By the theater and I’m just crying. And my teacher came over and she was like, “What happened? Like, are you okay? What happened?” And I just was just like, “I just wanna do that so bad.” Like, I was crying because like, I was just like, I wanna be a part of this. And, every single day walking from my apartment to rehearsal, I passed that corner, that same exact corner where the 17-year-old in me was crying, saying that she just wanted to be a part of this world and community.

And not, for not a single day did I not reflect on that and was grateful and excited and pinching myself to actually be like, holy crap, I did it.

And that is twofold in that it’s incredible, from the perspective of, “Wow. I, I’m humbled and it’s amazing. And we need more of this, please.” But, on the other side it’s like, “It’s 2022. Like there’s never been an actress who’s an amputee on Broadway. Like, why is that?” And so, it’s amazing and humbling and all of those things, but it also comes with a bit of a, you know, you have to hold yourself to some respect to a higher standard in what you put out in the world, how you interact with people. And so, I’m really careful about how I present myself because I do feel a responsibility to a community of young girls who are looking to me to be the person to point to and say, “Well, she did it so I can. I can too.”

Jay Ruderman: Let’s talk a little bit about your activism and when Dwayne Johnson played an amputee in Skyscraper. You put out an open letter, you did some press about it.

Katy Sullivan: I picked that moment to, rattle the cage in a big way for two reasons. I was never going to be considered for that part. Like I didn’t want it to come across as like, oh, I wanna play that part. I would be more careful about coming across as an actress who’s like sour grapes. So it felt like, okay, this might be a, a decent time to point this out. And also, Dwayne Johnson seems like someone who’s sort of open and receptive. I’m sure it could have felt like I was attacking him, but I was honestly trying to start a conversation about, representation. If you look at individuals with disabilities are 20% of the population. The largest minority not only in our country, but globally. But we’re still the least represented, am I busier personally? A hundred percent. I’m way busier than I ever have been.

And, I think that is, it, all, comes from, germinates, from that place of enough people have said, ” Hey, can we tell our own stories?” And /or,” This is not okay.” And, and the people who are making the money and putting their money down are starting to, that’s where you have to get to the people who are like, okay, this is gonna be a problem for us.

That has to outweigh, at some point, casting Dwayne Johnson or saying, how do we rewrite this script in such a way that we can use a performer with a disability? And Dwayne is still the biggest star in the movie. Like, how do we marry these two? And I’ve, I mean, personally gone and had meetings with producers, and sat down with them.

There was a film that came out, a number of years ago, and again, it was a, they used an able-bodied actor to play an amputee. And I asked the producer to have a meeting with me, and, to his credit, he did. And we talked about it and he was very candid about it. And he said, listen, it’s box office draw.

Like, this is an independent film to begin with. And then if we don’t have, you know, X name attached to it, are people gonna come? And that’s where I feel like things are changing and starting to change because there are so many projects now where people are like, oh my gosh, have you seen, and it’s this tiny little thing that like, look at Crip Camp.

It went all the way to the Oscars because people were so blown away by the story, not necessarily who was attached to it. So, I mean, I know that was a documentary, but, and I said to this producer, no one is going to. you know, Dwayne Johnson until someone’s given an opportunity to become Dwayne Johnson. So that’s the difference.

Jay Ruderman: Exactly. Do you think we’re going in the entertainment business of more authentic representation that you’ll see people with disabilities playing parts that don’t have to do with their disability at all?

Katy Sullivan: I certainly hope so. And I feel like how we get there is more writers from our community, being, having access to writers’ rooms or developing a project, developing a series. Because they will look at the mundane, which will always seem extraordinary to like the able-bodied population or the people who don’t necessarily, have someone, have personal life experience with somebody who lives their life this way.

I’m excited about where we’re going in that direction too because more writers from our community or more writers that have life experience with somebody who lives this way is, are, we’re gonna get to the place where it’s, it’s less of I’m a hero from some recent war or a plane crash victim or a cabinet fell on me and I got squished. Like, that’s my early career that, you know, my early television career, a lot of veterans, really good at my military salute and, you know, some tragic accident. I’m interested in the woman who is a double amputee, going on a date or going to, you know, going to the D M V or, you know, what are those stories? And in my life, now, what excites me are those opportunities in those times to play a character that it’s not necessarily about disability like that cuz that’s where I came from.

I came from this place of, well I can play Hedda, I can be in this Oscar Wilde play, I can do Shakespeare, I can do all these things. And it’s not about disability. I was a part of the new season of Dexter and, my character, was disabled, in a wheel- she was a wheelchair user and she identified as a person with a disability. But like, it wasn’t a plot point. It wasn’t emotional manipulation for the audience in some way. She was just a woman with a job and she was the town gossip and she was funny and whatever from a seated position, like, and it, I was like, “Yes, this. More of this: Playing roles where it’s like, well, why can’t that lawyer be in a wheelchair? Or why can’t that doctor have a prosthetic leg?” Like, I don’t understand why we can’t move in that direction.

Jay Ruderman: Exactly, exactly. Katy, it was so exciting to have this conversation. So enlightening and, and I really appreciate you being our guest on All About Change. So thank you so much for your time. I wish you much success in the coming years.

Katy Sullivan: Thank you so much. It was my pleasure. Thank you for asking me.

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Jay VO: All About Change is a production of The Ruderman Family Foundation. Our show is produced by Yochai Maital and Mijon Zulu.

As always – be sure to come back in two weeks for another inspiring story. Jason Docton is going to take us into the gaming subculture. We will learn about how gaming impacts mental health and what can be done to help. In the meantime, you can go check out all of our previous content – live on our feed and linked on our website – allaboutchangepodcast.com

Lastly – If you enjoy our show, please help us spread the word. Tell a friend or family member, or consider writing a review on your favorite podcasting app. I’m Jay Ruderman and I’ll catch you next time on “All About Change”.