Katy Sullivan On Disability Representation On The World's Biggest Stages

Image Description:
Katy, a woman, bilateral amputee, with long, copper hair with bangs, standing proudly with one hand on her hip wearing a black, belted, pleated dress and a black jacket. Overlaid is the text “Always Looking Up. Episode 95 -> Katy Sullivan, Disability Representation On The World’s Biggest Stages

Jillian Curwin: Hi everyone. Welcome to Always Looking Up, the podcast where no one is overlooked and height is only a number, never a limit, hosted by me, Jillian Curwin. Each week I will be having a conversation about what it is like to live in a world that is not necessarily designed for you.

In this week's episode, I sat down with Katy Sullivan. Katy is a Paralympian, one of the first bilateral amputees to compete in the games in ambulatory track, US record holder, and an actress of stage and screen. Katy was most recently on Broadway in the play Cost of Living, which examines two pairs of relationships between disabled and able persons. We discuss the differences between performing at the Paralympics and performing on Broadway, the importance of telling a story like Cost of Living Authentically and a new potential version of the Bechdel Test. Let's get into it.

Hi, Katy.

Katy Sullivan: Hi. How are you? I'm so excited to be doing this.

Jillian Curwin: I’m good. I'm equally as excited to be having you on. How are you?

Katy Sullivan: I'm so good. I'm so good. I'm glad we can finally make this work, but with busy schedules and busy lives, this is really exciting.

Jillian Curwin: Yeah, this has been a long time coming, but it's worth the wait and I cannot wait to be talking with you. I met you like, a while back, but we didn't really get the chance to talk. So now, having this opportunity to just sit down one on one, and there are many things that I want to discuss, but before we get into those, why don't you tell my listeners a little bit about yourself?

Katy Sullivan: So, my name is Katy Sullivan. I am an actress. I've done a little bit of producing, writing some. I'm also a Paralympic athlete. I am a bilateral, above-the-knee amputee, and that was from birth. So everything seemed to be normal, totally normal pregnancy for my mom. And it was when she was in labor that one of the nurses goes, oh my god, which is kind of horrifying, and my poor mother. But so yeah, I was just, I was born without the lower halves of my legs. And I started wearing prosthetics when I was about one. So like, as soon as I started trying to pull myself up to stand, my parents were like, okay, well, we got to put something underneath her, so it's, you know, it's all I've ever known. And, you know, it's, it's been a, it's been, it's got its challenges. It's had its ups and downs. But, you know, it's been a, it's been an interesting ride, this life of mine. So…

Jillian Curwin: And we're going to get into it. I have this very similar, similar but not, story. Like, my parents didn't know that I was a little person until the day I was born. They were doing a test and they were looking for measurements, and I was being stubborn and wouldn't get into the right position. But during the measurements they were like, we think there might be, we don't know, but we think so….Like, we can either, we can have the baby now, deliver via C-section or like, come back in ten days, we'll still deliver via C-section, but like give you a little bit more time. And my parents are just like, well, once you said that, we wouldn't know what to do. So...

Katy Sullivan: Yeah. You’re [gonna] send me away for a week and a half, and I'm just going to be fine with, like, not knowing what's going on? Yeah.

Jillian Curwin: Right. So that's kind of like, how…and then I still like, didn’t get like an official diagnosis till like six weeks later. But yeah like, very similar like, they…totally fine. And then they're like, oh, wait, maybe not.

Katy Sullivan: She's going to be a little different.

Jillian Curwin: Exactly.

Katy Sullivan: And it's really interesting. It's, it's interesting to sort of, I mean, you've talked to so many people on your, on your show and like, so many vast, different experiences of living your life with disability. And, you know, the difference between being born with a disability versus, you know, having, acquired a disability in, you know, later in life and how that shapes who you are and how you how you deal with things and how you function is, it's always interesting to me how adapt, you know. I feel like the disabled community, we have a knack for adaptation and kind of rolling with the punches and sort of, it's kind of baked into who we are as a culture. You know? Just sort of going, oh, well, okay, let's figure out plan B. Like, what is that? Just by the nature of how we have to deal with a world that is not designed for us, with us in mind, you know?

Jillian Curwin: Right. And, and so I've had this conversation with someone recently where I was like, and I've always asked my friends and it's a question I’m going to ask you in a second like, defining disability. And so many of them who are not little people, they've come into their disability later on in life. They've experienced some part of their life, whether it's a short period or a longer period, as non-disabled. And then they had to make the transition. Whereas for people like you and me, we don't know anything else. And I realized recently, like, but my parents had the transition. Like, our parents had to be like, they are coming into a world that is non-disabled into disability. It's not the same, but they're the ones who kind of had that life changing moment for them where they then have to learn to adapt, whereas we're kind of having to…we don't know anything else.

Katy Sullivan: Yeah, no, that's such a, that's such a very interesting way to think of it in that, you know, a disability affects everyone in a family, in a group of friends and you know, it, it colors everybody's experience. That's really true. That's cool.

Jillian Curwin: Yeah. So then I want to know, how do you define being disabled?

Katy Sullivan: Oh, gosh. I mean, you know, I…One of the things about the disabled community to me that becomes fairly challenging in some ways is that we're so diverse. We're all under this big umbrella. We're all under like, okay, this, this label. But like, it's not in the same way of like a, an ethnic minority, or a people from that have this sort of like, oh, I identify as, you know, from this culture or whatever. Um, we all have such different perspectives and needs. Our needs are so varied. And I think, I think that's one of the things that's so beautiful about the disabled community. But I also think that's one of the challenges of it because when we go to be advocates or when we go to try to, um, when we go to try to like, raise a stink about something or say like, this isn't fair or whatever, the variety of needs that people are asking for are so vast that sometimes it's hard for us to all stand underneath the same umbrella. And will people who have this lived experience care as much about I do about, you know, physical access to something? If it's, if it's someone who is deaf, you know, we have totally different ways of looking at the world. But, yet, we still kind of all stand under the same umbrella. I don't know if I even answered your question.

Jillian Curwin: You did. No, I think you did. I mean, it's, it's how everyone interprets it. And I think that's so true, is that disability is so incredibly diverse and it is so hard to, as advocates, to kind of speak up and speak out. Especially, you know, another layer to that is that non-disabled society has such a narrow view of what disability is, and they don't seem to want to necessarily listen to those who are saying, no, it's not just about making sure you have a ramp. It's not just making sure that it's accessible for a wheelchair user, and, you know, it's making sure that everyone's access needs are met. That when we're talking about disability, we're not just talking about one small group of it like that, you know, like, recognizing that. And I think that we have a long way to go in getting there.

Katy Sullivan: Right?

Jillian Curwin: Right.

Katy Sullivan: Yeah.

Jillian Curwin: So, I want to pivot. So first, were you…Okay, were you first a Paralympian or were you first an actor? Which came first?

Katy Sullivan: So it's, that's actually a great question because so many people are like, she's a Paralympic athlete who is now acting, which is totally bogus information. I, I went to my first audition, I begged my parents to go to my first audition when I was 12. I was like, you know, so desperately, wanted…I grew up, I mean, I basically came out of the womb singing like I [laughter] sort of be the center of attention. And it's all I've ever wanted to do. I mean, I did theater growing up and, and if I wasn't, like, cast in something, I would volunteer to, like, build sets or be a stage manager. I just wanted to be in that building like that.

And so it was actually when I was about 25 years old that I was given the opportunity to try a pair of running blades. And I had no expectation or agenda in any way to end up at the Olympic…I mean, the Olympics or the Para-...I mean, it's bananas. If you had told 17 year old Katy Sullivan that she was going to be a Paralympic athlete I'd be like, I think you have the wrong person. But it, what it kind of all came together at this really interesting time where there was I think we've gained a lot of ground and things have really changed quite a bit in the entertainment industry for performers with disabilities. But there is a period of time there where I was getting like, an audition, one audition, a year, you know. And, and talk about the amount of like, pressure and anxiety of like I have, I have to book this. I have to do well because I may not get called in for another 12 months for something. You know, you get one opportunity a year. So, so running really kind of became some-, something outside of just focusing on being an actor and the frustration that one can have trying to be an actor. It gave me an opportunity to be a little bit more of a well-rounded person to focus on something else.

And I had a hard time even wrapping my mouth around the word athlete because I just, I'm a, I grew up without my, I grew up without legs. Like, being an athlete was not something that like, I had any, you know…I would, I grew up sort of doing gymnastics as a little kid and I did swim team and things like that. But the minute you get to competition or like, a swim meet or something, I can't keep up with able bodied kids. And so at some point I was just like why am I even doing this? I'm not having fun. But as an adult running sort of became this other place for me to focus my energy, and a really positive place to focus my energy in the meantime, you know, waiting for…And I and I really treated athletics like playing a character because I was so scared. Like I'm, I was kind of always the person that was, like, really talkative, to like the other competitor, you know, everybody gets their like game faces on. And I was just like, what do you guys doing after the track meet? Like, sort of, like, so not used to that sort of like, you know, cutthroat competitive thing.

But I foc-, I went at athletics, like I was playing a character. I was like, okay, well, if, if I am an athlete, if I was playing the role of an athlete, I'd probably get up at 5 A.M. and go to the gym. An athlete would probably eat this apple instead of, you know, this bag of chips or whatever. And it was, it really was a story of fake it till you make it, because at some point I'm getting on a plane to fly to another country to run the 100 meters for the United States. And it just, it was sort of a really out of body experience in a lot of ways. Yeah.

Jillian Curwin: I’m sure. I was going to ask like, what was that like? And, you know, you compare it to acting and like taking on a character. So then like, what was it like taking on the role of a Paralympian and competing on the world's biggest stage, which is the Paral- like, at the Paralympics?

Katy Sullivan: Yeah, I mean, it was incredible. It was incredibly humbling and exciting and it's interesting to be on, to be on a track team in a lot of ways because it's a, it's not a team sport. But then you have all of these, you, you make all these friendships and you get to know all these people and talk about diverse. Like, you know, the, the guy sitting next to me on the bus is visually impaired and he's a long jumper. And the girl sitting next to me on the other side is a wheelchair race user and she runs the 400. And, you know, I mean, it just…I…It was such an incredible experience. And I also think it was a time in my life where I got to a place of owning my physicality, owning who my, who I am is, as a human being.

And it's interesting how many things mirrored like, you know, they say life in art imitating life or life imitating art, whichever way it goes. But I booked a, it was shortly after I started running, I booked a sitcom on NBC where in one scene she's coming in from jogging. And like, I was like, oh, I actually can do that. I can actually do it. Like…so the other, you know, the other thing about kind of being a being a competitive athlete was, you know, for me, I can put on a prosthetic, you know, covers that look kind of lifelike and I can wear jeans, I can wear pants or whatever and sort of cover up a bit like…I called it, they call it the art of blending in. And it really was running that made me step so far outside of my comfort zone of of being able to say this is me, this is my body, and I'm proud of what it can do and what it's done for me, which has just continued in my acting career, being vulnerable in that way, sort of showing, showing who I am and what's going on with my body. So…

Jillian Curwin: I have so many thoughts on that and just like, the coming to terms. And again, for us as two individuals who were born disabled, I feel like I never, I will probably never compete at the Paralympic level. But like, that coming to terms with your disability and likem our bodies and likem we don't know our bodies any differently, but it still takes a while for us to accept and see the power and the beauty of being disabled. And even if you're born it like…I understand for people who maybe who come into it later like, that's a huge change that they're adapting to. But like, we don't know anyone else, and here you're competing at, on the world's biggest stage and you're, you know…

And again, and like, I mean, going back to the sitcom like, I have to wonder, do they think that when they were casting like this person, they're not thinking of you necessarily being able to come in from a jog? And here you're like, well, guess what? Look what I actually, look what I can do.

Katy Sullivan: Right?

Jillian Curwin: Right.

Katy Sullivan: And I think it, it, it is sort of that, that honestly, I think running was sort of that gift for me of like…I mean, some of it comes with age. Like, you know, you're growing up and you feel different and you feel like everybody, whether you have a disability or not, everybody has feelings in like adolescence of like, god, I wish I had blank. God, I wish my, you know, I wish I was taller. I wish I was blonde. I, you know, whatever, whatever it was that you're like I wish, you know, all of the things of, like, wanting to fit in and what I wish I had learned earlier and I'm glad I finally got there, was that it's truly the stuff that makes you unique. Those are the things that are ultimately going to be the most helpful in the long term, because if we all were the same exact cookie, cookie cutter, like, I mean, how boring would the world and the, and our lives be? And I think if I, if I had one regret, which I guess is not really a regret, but like, I wish I'd gotten to that place younger, you know, of just being like, this is who I am, and you can, you know, take it or leave it. But like, and that doesn't….But you taking or leaving it doesn't change anything for me. That's your stuff, you know what I mean?

Jillian Curwin: Right. And I think it's, you know, it's interesting. And I want to pivot to talking about acting because, well, it sounds like you were still trying to act and build your acting career while being a Paralympian and being an incredible runner. Which, when did you sleep? First?

Katy Sullivan: Well, you know, it's interesting because it really was, there was sort of a drought there for a little while. It was really interesting. It's kind of like, the universe made space for me to do this thing. And I often thought like, if a project came up and I had to choose, I probably would have chosen, chosen the acting job. But things were in such a place with our culture and with, with the entertainment industry that I didn't have to make that decision. And I got to kind of go on the ride and, and have the whole experience and then get to, you know, get to accomplish what I wanted to accomplish and then just have that be a chapter in my life that happened and I closed and, you know. But that, that also goes into, you know, the idea of like, how far we've come, but how frickin’ much farther we have to go in the in the industry, the entertainment industry, of people being open to like, the largest minority in the country, in the world. We’re the largest minority in the world. And we're, we're the least seen in our entertainment and our media. So I feel like we, we've sort of reached a tipping point. And it's exciting to be a part of that, you know, and to have seen it kind of come up. But you've just there's a little bit of like, where was this 15 years ago, you know?

Jillian Curwin: Right. And it's like, why are we only now seeing some sort of positive momentum in the right direction? And it's like, interesting like, seeing your career….And we're going to delve, don’t worry, we're going to delve into the Broadway stuff in a minute because I have a lot of questions about that. But interesting dichotomy where it's like, you're performing on two stages, it's like, around the same time. One is a stage that is very embracing of disability, that is celebrating it, that is saying look at what these bodies can do. These are, you know, incredible athletes. And, you know, our vision of athletes are usually non-disabled and here, you know, and like…I had gone to London a few years after the games and seeing, you know, and they're like obviously like, celebrating and like, you know, having all these, like, exhibits and stuff and seeing like how much space they gave to the Paralympics was like, they were proud of the Paralympic Games that they put on.

Katy Sullivan: They were. London, I think, was the first time it, I could be wrong. But I do think this is correct. Like, London was the first time the Paralympics were ever sold out. And they were, there were billboards up in, around London that was like, the BBC that said like, thanks for the warm up. And then underneath it it says the Paralympics start on, you know, whatever day. And it was just they were, they were such gracious hosts. They were so excited to have these games. They had a talk show on every night that they talked about, you know, like it was all encompassing, and they did not shy away from it at all. And I think it just amazing to be a part of that and to…

I have actually spent, I spent time in London and in England for, for the Paralympics. And then I actually did Cost of Living, the play that I just did on Broadway. I did, I got to do it in London. And like I, I love London so much. I think, you know, any excuse for me to go back, I'm like, I'm, I'm, I'm available. So...

Jillian Curwin: Yes, and again, like you, you're on this, like, huge stage to celebrate…And then you're going to Broadway, which is a huge stage in itself, which is a stage that has not been accepting of disability, not wanting to have disabled actors, not wanting to cast authentically when they do have disabled characters in their show.

And I mean, you were just here and I missed it. But I want to talk about Cost of Living because I think it is such an important show. So can you just like, first talk about like what, what’s the story? What is Cost of Living?

Katy Sullivan: So Cost of Living  is a four person play that is sort of two storylines, and it's a caregiver and someone who needs care and a caregiver and someone who needs care. And you don't really know how the two stories connect until the very end. They sort of feel like they're parallel to each other the whole time until, until the very end. And it, it truly is a show. One of the things I love about the show so much is that Martina didn't write….there’s very little education in it. Like, there's very little like, explanation of like, this is a spinal cord injury. This is what it means to have cerebral palsy. Like, there's none of that. It is, it is characters having to kind of figure out what they need in their lives, you know, day to day. And there's no, like, teachable moment about like, this is how it is to, like, live your life from this perspective. And it is really, truly about relationships. And, and I think if they had cast the roles of John and Ani, I played Ani, with able-bodied people, I don't think it would have had the impacts that it did and really change people. I mean, the people would stop at the stage door and just like…we're so, we're so not accustomed to seeing real, real bodies and real disabled people on stage that it, it has this profound effect on people and it's, it's, it's changed my life. I mean, it's, it is anyway...But the show, the show won the Pulitzer Prize.

I did, so I did a production…I got the script for the first time in 2016, I think it was 17, and that was when it was just a workshop. So you get together and you spend a week and you read the script and the writer goes away and rewrites and then comes back and you read again and, and I didn't even know if I was going to be offered the job. Like, I went to the workshop without knowing that I got to, like, do a production until after we got to the end of that week. And, you know, we did it at Williamstown and then we did it Off-Broadway. And then, in 2018, it won the Pulitzer Prize. So that's kind of the thing that like, turned the, turned the direction towards Broadway.

But, you know, it's a, it's a, a beautiful piece of theater that is kind of, it, it rocks people to their core because you are seeing people, people really sort of exposed. I mean, literally on Greg's part, he takes a shower in one scene. He's totally naked. And like, you know, you're it's…how much? Oh, there was a, here's an interesting little anecdote. There was, when it was Off-Broadway there was a, we do talk back sometimes after the play and there was an audience member that….So, I had my, my character is in a wheelchair and I was not wearing my prosthetic legs in the play. And this woman was in the talk back and she was like, “The whole time I was trying to figure out if it was like, a trick wheelchair. Were you like sitting underneath it? Were your legs folded underneath you? Were their mirrors?” And I was like, mirrors? I was like, what?

Jillian Curwin: Right. I'm shaking my head. For those of you listening, I’m just shaking my head.

Katy Sullivan: So this woman was like, and then I would put my prosthetics on and do curtain call. And there were people that were, and people, a man came up to me outside of the Broadway show that said, “I was trying to figure out how that wheelchair worked and where your legs were the whole time.”But I was like, That is what you, that is what you take away from this. Because we're so, we're so used to CGI in our movies and our entertainment that like, when you actually see something real that is different your, your brain is like, oh, what's the trick? How are they doing this? And so I applaud Manhattan Theatre Club so much for, and Martina. It’s written in her script. She was like you must use, you know, she kind of puts a line in the sand and says you must use performers with disabilities in this project. And I know that she's left a lot of money on the table because there are places that want to do production, it’s a beautiful play, productions of it around the world in different places. And she always says you have to find a performer with a disability to play these roles. And if they are not willing to, which has happened, or they cannot, she loses out on an opportunity to have her, her, her play done so…But we need, you know, we need more allies like that in this industry that are, that say, no, no, this needs to be authentic. I feel like we're at this place that, where people want that authenticity.

Jillian Curwin: Yeah.

Katy Sullivan: Yeah.

Jillian Curwin: No we, we absolutely are. And I, again like, I give such tremendous respect to her because that is a, that is a big decision to make - to say that unless you're going to cast authentically, you're not putting on this show. And it's interesting, you know, because I had this, I had actor Jenna Bainbridge on, she's a wheelchair user, and we were just talking about this, how like Wicked, the movie is casting authentically, but Wicked the show still hasn't with their characters. And it's like, why, why? And I'm curious because like, to talk about like, theater or like, accessibility and everything like, and bringing these shows to different theaters, what were those conversations like, about making sure that these spaces are accessible? I feel like that's honestly the biggest…One of the biggest problems is that they're just saying, well, the theater is not accessible so we're not, and we're not going to change it.

Katy Sullivan: That is a huge part of the problem. Not only backstage are…does that, is that a roadblock for performers with disabilities, but even front of house. In the house there's a lot of places that are like, there's no elevator to the orchestra or, you know, to the mezzanine, or there's no…Broadway is, very little of Broadway is accessible like, at all, to be, to be perfectly frank. And that is where I have to acknowledge Manhattan Theatre Club for doing what they did. They, you know, they, my understudy is an actress who is a wheelchair user and she needed, they ended up building a dressing room basically in one of the wings so that she had access to the space like…

Jillian Curwin: Yes.

Katy Sullivan: We were like…I said earlier, this world was not designed with anybody with a disability in mind like that at all. And so there is, there is a, a lack of that sort of thought process of like, how do, how do we do this? And it's interesting. I, I ended up having a conversation, you brought up Wicked, and the writer of that show came to see Cost of Living, and we had a conversation afterwards. Lovely guy. And I told him, we talked about the fact that in the, in the film they were casting authentically for Nessarose. And I was like, I'm really proud of you guys for doing that. Like, I know it's not the easy route. I know it's not the easy road. And he was like, well, it's, we needed to. It was obvious this, what needed to be done and that, and but, but why is there not that thought for the Broadway show, too? And I hope they do get there. And I think they've probably, I think they probably will. But yeah, it isn't the easy route. And I, but I think that's, that's one of the, also one of the misconceptions, though…

Jillian Curwin: Yes.

Katy Sullivan: Are there steps that you're going to have to take to make things accessible, to accommodate people's access needs? All of those things. But I believe that disabled actors, you know, performers with disabilities, just this community in general, I feel like we are kind of masters of adaptation, that we are like no, this isn't going to work. But, you know, what will, and I think people are so afraid of it being extra work, or extra this or extra that, that they just kind of shut it down before they even have a conversation about it. And so to me, it's not necessarily so much about pointing out what's wrong as like celebrating when people do right. You know?

Jillian Curwin: I agree. And I have, I've heard some things as to why Wicked hasn't done it yet. And I think one of the main things, and we can talk about this more off-mic, but I do, and like, I think one of the main things is just the design of the theater and the actual, the, like... And again, a lot of Broadway theaters backstage do not have elevators. So just the, the actual ability to have a wheelchair user who maybe may not be able to get out of her chair and having a wheelchair backstage versus having an actor who can easily just run around and then get in the chair immediately. Like, that's easier. And I don't know, I've heard they might not be possible at the Gershwin, but then at the same time…

Katy Sullivan: But see, that to me is just an excuse.

Jillian Curwin: Exactly.

Katy Sullivan: You could cast, I mean, I can think of, there are actresses who are talented enough that can do that and maybe they are an amputee on one side. So they could take, they could take the stairs to a dressing room and then they go. But then you're, you're still casting authentically. You still get to, you still get to be groundbreaking and make strides towards inclusion and authenticity. You know, when people cry we can't possibly I'm like, think of any other marginalized group in, in the history of the entertainment business. At some point people start going, can we please tell our own stories? Can we please be included in this conversation? And I think we, we are, we are making...We're rattling the cage like, we're definitely making some strides in the right, in the right direction. But we still have a really long way to go.

Jillian Curwin: Absolutely. And I'm at the point now with seeing, with seeing some of the shows that, of like, the structural like, saying it's just too hard structurally the way the theater is designed…Because I saw a show in 2015, 2016 that took out seats to make a very like, an immersive theater experience. So they redesigned the house. They, and that was very easy for them to do. And I saw the sketches and the like, virtual, I don't know what you would call it, but like, the proposed idea for a show that's coming to Broadway, I think this season. I don’t know. This season is packed.

Katy Sullivan: It is crazy crowded this season.

Jillian Curwin: This season's incredibly crowded, which is a good thing that we're seeing all these new shows come out. But this one show like, they, they're taking out like, all the seats. They're kind of trying to make it like, a dance club vibe. And I'm looking at this, I’m like, this is an accessibility problem, but we're willing to do that to create an accessibility problem, to make for the theater…So then at the same time, I'm like so what's stopping you from making the modifications to the theater so that you can have authentic, authentic casting? Like, what’s really like…? I don't buy that. I'm starting to buy that excuse less and less seeing with, what shows are doing.

Katy Sullivan: Right. And I, it really comes down to who is making the financial decisions, first of all, and what their commitment to authenticity is. But also, not to keep talking about MTC, but they, their, their accessible seats were the very last row of the orchestra and it was with Cost of Living that they changed the theater. And the accessible seating was then like, seats that could be removed from the like, front row. I think was the front two, first two rows. So the accessible seating went from the nosebleeds at the very back of the house to the front, the front row. Because their philosophy was, their thought process was this is the first time that people who are living this kind of life are going to see themselves reflected on a Broadway stage. They deserve to be in the front row like, they deserve to have that access and that ability to kind of see the sweat running down our faces like that. And that, and that meant so much to me. And yes, was it a, did they have to spend some money and figure some things out? Yes, of course they did. But they're going to spend a bunch of money on other stuff, too, you know what I mean? So I totally agree with you that it's, it just comes down to what people's, if it's not their priority, it does kind of come down at a, at a certain point for people like you and people like me and, you know, people in our community to start, you know, you got to speak up and you got to say it's not fair. And you got to, you got to be an advocate for your own community or nothing's ever going to get, nothing ever is going to change.

But I didn't realize until, it makes sense, but I didn't realize until I was already in the process and that people were, I was being interviewed doing Cost of Living on Broadway, that I was the first actress who is an amputee to ever be on Broadway. Ever, ever. It's never happened before. And at the same time that I was like, wow, that's incredible. And then I was like, it is 2022. Like, this is so stupid. Like, what? Why, why? And it's just that question of like, you know, you could probably count, I don't know, maybe, probably on two hands, but you could probably count on two hands the number of performers with disabilities that like, have a, you know, disability with a big, big D like, ever to be on a Broadway stage. And that's not to say, you know, invisible disabilities don't matter or whatever. I'm not trying to get into that kind of politics. But I'm, but I'm, the, the fact that in 2022, we're still like, oh, you're the first to ever it's like…

Jillian Curwin: Right. And the first wheelchair user was a couple of years before. Like that, like we're so far behind when it comes to disability representation, particularly on, on stage. I do think that film and TV, and you can correct me if I'm wrong, are definitely making bigger strides. It still has its…There, there's still problems. But, and it's, you know, like, there are these roles even for shows that are long running and well-established like, there are so many roles that the character has nothing to do with…I, again was talking with my friend, we were talking about roles that we would could see being played by disabled actors, whether it's something that we think is canon or just something that, if we have disability, would enhance the story. And there's so many roles out there, so many characters, and also just giving writers and creators like Martina to, the platform, like Broadway, or even Off-Broadway right now. Ryan Haddad, as of recording this like, his show, is amazing.

Katy Sullivan: He just got, he's just racking up the nominations for all sorts of things. He’s killing it. Yeah.

Jillian Curwin: I saw Dark, Disabled Stories. I saw it- it's closing. We're recording this the week it's about to close. And it is truly, it was truly like, one of the most, like, amazing pieces of theater, and so important. And I was sitting in the audience, I don't have Ryan's disability, I don't have the disability of any of the other actors on that stage. But I could see myself in their, in this, in them. I felt represented. Seeing you and watching the clips that I was able to see, because I was so mad that I could not go see it, but seeing you and like seeing the clips from Cost of Living like, I'm like, I’m seeing disability. I see me. Like, that is so powerful and it's just like, and it's also like, yes. You're the first, but you better not be the only.

Katy Sullivan: No, I mean, I feel like you kick that door down and now like, okay, who's next? What…?

Jillian Curwin: Yeah.

Katy Sullivan: You know, let's get it. Let's get a, you know, a disabled Nessarose. Let's get a, you know what I mean? Like, let's do these things. And I agree with you. There are, there are so many characters that can be so much more interesting and fleshed out without saying a single thing if it's played by someone who is a performer with a disability. I had, I was early in my career, I was in a production of an Oscar Wilde play called Lady Windermere’s Fan. And there's a character in the third act that, and I was not playing disabled, I had…this is when I was still sort of practicing the art of blending in. And I didn't, you know, I had a corset and a bustle and giant skirt. And I, you know, I was not playing disabled. And there's a character in the, in the play that is sort of, he's, I would call him a fop from that sort of period of writing. Like, he was very like, but just had a huge chip on his shoulder. And you didn't, there was no explanation for why he was so kind of catty and, you know, angry and whatever. And the actor in the show, the day, the night after opening night got hit by a car and he was out for, we had to like, go on with understudies and we had to like, do all this stuff. It was kind of a nightmare, but the run was long enough that he was like, I want to come back into the show. But he had a, he, he broke his leg really bad. So what they did is they found an antique wheelchair and he, with his broken leg, got wheeled around this, you know, wheeled himself around or wheeled around the stage. And it changed the character in such a cool way. You sort of under… I mean, like his first line wheeling into the into his first line in the play is like, “Isn't it nice to see me?” Like it, you know? And then your question, the question is like, you know, what happened to him? Like, why is it…?

Jillian Curwin: Right.

Katy Sullivan: Fleshed out the character in such an interesting way, which is actually something that I think they're also doing. There's a production of A Doll's House at, in, on Broadway right now. And they cast Michael Patrick Thorton, who is a wheelchair user, to play Doctor Rank. And it's so fascinating to see. I mean, that character is, you find out, that he's dying like, you know, throughout the course of the play and you find out that he’s sort of hidden it. But he's like, terminal. But like, how interesting to have a performer with a disability sitting in a wheelchair that's like, no, yeah I'm dealing with this thing and I'm not going to be here for much longer and that's why I've been acting the way I have. Like, there are so many examples of like, a, how much more interest you can elevate a character just by, by making them, you know, disabled.

Jillian Curwin: Absolutely. And I'm curious. I worked at a talent agency for a couple of years, so I would see all the breakdowns. And, to the best of my memory, they would specify if it was disability specific, but there was never no, like, you're never going to see non-disabled. Like, you're never gonna say, “We're looking for non-disabled.”

Katy Sullivan: Oh no, that would be...

Jillian Curwin: Right. Like, you don't see that like, even now you don't see that. So like, there's nothing that says that the character has to be non-disabled, but that also means that there’s nothing that says that character can't be disabled.

Katy Sullivan: Right? Why can't that lawyer in the show use prosthetic legs? Why can't that doctor be a little person? Why can't this…? Why can't, you know, this businessperson or this drug dealer  Like, whatever, whatever the role is, why can't that be an interesting choice? And it's…I will say this. I was on the TV show Dexter. I shot, I shot most of that, or…not most of it. I shot that, we shot it all the way through COVID. It was all of like…Half of 2021 I was going back and forth from New York to Boston to shoot Dexter, and my character is sort of the town gossip, and she's got crazy teased hair and rhinestones on her nails and just, like, super crazy out there. I've not, I have yet not, I have not been, not a single person has come up to me on the street or in an airport or anything being like, “Were you on Dexter?” Because I look nothing, I think I look nothing like her, but…which is pretty funny, but, but they want- they were just casting, you know, a performer, wanted to cast a performer with a disability.

And at one point I before I had seen, you know, I was sent all ten scripts to read. And I was in eight, I was in eight of the ten episodes. And I was like, oh, I wonder if it's a plot point or I wonder if we find out why or whatever. Not once is it mentioned. Is it, it's sort of like the disabled Bechdel test like, can you have a disabled character seen, you know, in a scene without talking about being disabled? And the, Clyde Phillips and the writers for Dexter, I think, were super successful because she's just a woman with a job who is the police dispatcher. She works in the local, you know, small town police station, and she happens to have a disability. And I talked to Clyde Phillips at one point and I asked him, I was like, why? Why did you, why did you write this character? Because she could very well have been an able bodied person. Like it didn't, it wasn't part of the plot. It didn't matter. And he said it really mattered to him that the world they were creating reflected the real world around us. And that's why it was an incredible, diverse cast. And, and the fact that he was like, I just thought we should have, I mean, someone should have a disability. That's true to life. And I was just like, I'm so, I was so excited to play that character because it had nothing to do with disability and which is, which was what was so exciting for me at that time, you know.

Jillian Curwin: And that sounds like such a novel concept, but it's really not. And now I'm like, I'm going to call it the Katy test after you. Like, I'm going to watch all these like TV and films where I know that there's disability, disabled actors, and I'm going to see if it gets brought up, and see…I'm going to do it because I know, like, Game of Thrones would fail.

Katy Sullivan: Oh, Christ, yeah. No, yeah.

Jillian Curwin: Game of Thrones would fail. Can you, like, provide real quick, just like…

Katy Sullivan: At least Game of Thrones was, they were inclusive at least. Although towards the end I mean, I guess you can, you can kind of go back and forth and say they put able bodied people in wheelchairs and stuff. And that one character, he became disabled in the like, second episode so they could have cast a little kid who…

Jillian Curwin: Yeah, no, I agree with, you. No, they absolutely could have. But, you know, Game of Thrones would absolutely fail. Can you explain, just like, when we talk about like… Now I'm going to do the Katy test. I'm going to do this. I will publish my results somewhere, even if it's just on my own platform.

What is the Bechdel test? Just so we can give…for my listeners who may not understand what it is.

Katy Sullivan: Yeah. So the Bechdel test is, it was actually designed to, to talk about women in film and it was, it has to do with the number of women in a production. But also are there women in a production that are having a conversation that does not involve talking about a man. Like, that was sort of the whole idea of like, the Bechdel test, and so many film films fail so, so completely and totally, until that's sort of what people were like oh yeah. I guess all we have women talk about is like, their man. Or like, this man upset or my boss is being mean to me or like whatever. So, so I guess the disabled version of the Bechdel test would be: Do you have a disabled character in your project that does not refer to or discuss being disabled in any way? And that would pass the disabled Bechdel Test.

Jillian Curwin: Yes, I'm calling it the Katy test. I will publish my results. Stay tuned. I have to think of like, so many films right now that I think of off the top of my head that I know would fail, and some of them are really good movies, but at the same time I know they'd fail. That's so interesting. But then...

Katy Sullivan: I guess also it, maybe, what would have to play into it too is, is are they casting, I think, casting authentically? Having a disabled character in scene work or scenes where they don't discuss being disabled like that, that would pass the disabled Bechdel Test.

Jillian Curwin: I'm going to do it. I'm going to, it’s gonna happen. It's, that, that is going to be… I'm, I'm so excited.

Katy Sullivan: Excited. I will say, I will say Dexter: New Blood passes that test for sure.

Jillian Curwin: It passes. There we go. So we know one. We know one passes.

Katy Sullivan: There is one.

Jillian Curwin: Yes. So now I know what I'm doing in my future. What are you, what does the future have in store for you? What are you working on? And can you give us any sneak peeks? Like, what are you looking forward to?

Katy Sullivan: I am, I'm pretty deep down a rabbit hole on a project that I cannot talk about yet. I can tell you, but it's you'd have to cut it out so...

Jillian Curwin: We can do it after I hit, when I hit stop. She will tell me.

Katy Sullivan: I am, I'm, I'm taking on a pretty epic project and I'm, it's terrifying but also really exciting. And I'm going to have the opportunity to work with a director that I've worked with in the past. And we, we really love each other. And, you know, so it's going to be, it's, it's going to be wonderful. And, you know, just oh, I oh, I don't even know if I can talk about that. I'm, I'm going to have my first animated character is coming out soon. I got to voice a character in a child, in a childrens, you know, animated show that's coming out. So many of these things that are going on that I just really can't talk about until I can talk about it. But, but there's cool stuff. There's cool stuff on the horizon. But I will say this, though, you know, it's interesting coming off of, you know, doing a Broadway show and then looking to see what opportunities kind of come, come after something like that.

I do think there is a, you know, you have to, you have to kind of take projects that, at least for me, the reason I say yes to something is like, you know, does it scare me? That's usually my first question. Like, does this intimidate me in some way? And if the, if it is intimidating in some way, it feels like something that you like. Cost of Living scared the crap out of me. The first time I read it, I was like, this is terrifying. And I think that's where, at least for me as an actor, getting out of, pushing yourself out of your comfort zone and, and really testing what your vulnerability, what is possible and, and, and, and just kind of taking that leap. I think that's where the magic lies. And I think so for me, often it's like, does this, you know, project freak me out? If it does, it's probably like, yeah, I probably should do it. So…

Jillian Curwin: I love that and I'm very excited when you tell me what these projects are. But for my listeners, stay tuned. All that though means, for my listeners, for my audience, is that you're just going to come back and talk, when you can talk about it and talk about it.

Katy Sullivan: Yes.

Jillian Curwin: So that's going to happen. Who do you look up to?

Katy Sullivan: Oh, gosh. I, I, I sort of, I feel like I look up to anybody who kind of lives their life fearlessly. The person that I, one of my teammates from the Paralympic team is her name is Anjali Forber Pratt. She's a, she's a wheelchair user and one of my dearest friends. And she is in the, she's working in the Biden administration now. She's, she's a, I call them muggles like, the friends of mine that are not not in the entertainment industry. They're muggles. But she's, she's this example of, of someone that I point to whenever I'm just like, she's, she's just fear…She's fearlessly devoted to fighting for disability rights and equality and she's so smart and she's, she's so wonderful and so, like, she's the one that I always call. We call each other when we're like, oh my god, the craziest thing just happened and she's like, you're the only person in my…And I'm like, you're the only person in my life. She’ll be like, I was on a billboard and I'm like, oh, yeah, I was, you know, just, like, random, random stuff.

And so, you know, I don't necessarily look, you know, to me, I don't necessarily go point to like, oh, the Meryl Streep's of the world and say that is, you know, I look up to that person. There are people that I, that I admire there artistically and you know, the Viola Davises, and the, you know, there are beautiful, incredible women that do what I do and what I want to do. But for me, the people who truly, you know, inspire me or I look up to are the ones that kind of live their lives with that sort of fierce abandon, you know?

Jillian Curwin: Yeah, I love that.

Are there any questions I have not asked that you would like to answer?

Katy Sullivan: I don't think so. I think I think we had it. This was a really fun conversation.

Jillian Curwin: This is a fantastic conversation. I loved every moment of it. And again, because you have stuff coming up that you can't talk about when you can, you're coming back on.

Katy Sullivan: That would be great.

Jillian Curwin: So the invitation is always open, of course. And in the meantime, though, if people do want to see what you're up to, what you're doing, that you can talk about, where can people follow you?

Katy Sullivan: I am on Instagram. I am @realkatysullivan. And Katy is with a Y like Katy. Katy Perry. And you know, I'm on the old school Facebook, I have a fan page on Facebook. But also I'm on TikTok. I don't really, I don't…Is TikTok going to exist much longer? I don't even know. But the funniest thing about TikTok to me is I, I put a reel up of me getting my prosthetic toes done at a, at a nail salon and it went viral. I've got like 1.6 million views of me getting my toes painted at this place in Jersey City. Like, it's so random. I don't understand. Like, and the reels, that I'm like, so proud of that. I'm like, this is going to be great, are the ones, you know, it's just me on a Saturday getting my toes done. So, my Barbie feet.

Jillian Curwin: I love that. Go follow her. Go check her out. Go follow her on TikTok and see, check out Instagram and see the amazing cover she has recently on the cover of Grazia Croatia. And the photo turned [out] amazing. And I can say, because this is where I met her, was behind the scenes because I was supporting my friend who’s also in it like, it's an amazing shot so go, go check it out.

Katy Sullivan: It was an amazing day that day.

Jillian Curwin: It really was. It needs to happen again.

So the final thing before we go is I have kind of like, an icebreaker, but it's at the end where I have five categories and I just want to hear your favorite and each one.

Katy Sullivan: Okay.

Jillian Curwin: Starting with favorite book.

Katy Sullivan: Um, I'll go with an old school like Anne of Green Gables like, old school book.

Jillian Curwin: Favorite TV show

Katy Sullivan: That changes. I am, oh, gosh. Right now it's Ted Lasso. Like, there's just something about it that’s just like chocolate, hot chocolate for your soul. Like, I love that show so much.

Jillian Curwin: That is such a good, like description of it. I love that.

Favorite drink.

Katy Sullivan: Well, like alcoholic beverage or like…?

Jillian Curwin: However you choose to interpret that.

Katy Sullivan: I am a, I think I keep LaCroix in business because I drink a lot of like, carbonated, I don't even know what's in it but like, Lacroix. But, but if you see me at a bar it's a vodka, it's a Tito's and soda, so.

Jillian Curwin: Oh, favorite piece of advice you’ve ever given.

Katy Sullivan: That, that “no” is someone else's opinion, that having a door shut in your face is just one person's opinion about what they think is possible. And you are welcome to disagree with them.

Jillian Curwin: I really like that. I really like that last one. And then you have a bonus one just cause I'm curious, but favorite piece of advice you've ever received?

Katy Sullivan: Favorite advice I've ever received on those, in the big moments in your life, take a step like wedding day, opening night on Broadway, those kinds of big, you know, something big is happening - take mental pictures in your mind throughout the experience. Because if you just kind of go on the ride, you're going to miss things. And if you can, like, for example, competing in the, in the Paralympics, running the 100 meters, I spent that whole day just taking sort of mental pictures of, of the, the experience, because when else do you get to do something like this? So slow down and pay attention to being in the moment.

Jillian Curwin: Love that. And bonus one, because we talked a lot about Broadway and theater, favorite show that you've either seen or show that you want to be in. And if you have a dream role, I want to know it.

Katy Sullivan: You know, I've always, I've always said this, and I…Maybe, maybe there's an opportunity for me to do it sometimes. I always wanted to play Sally Bowles in Cabaret. That is kind of, I was in Cabaret when I was pretty young and I was like, ensemble like, nothing. But it would be real, real rock star to, like, play Sally Bowles somewhere. That'd be great.

Jillian Curwin: Can we make that happen? Broadway, can we make that happen?

Katy Sullivan: Can we make that happen? Yeah.

Jillian Curwin: Please. We need a revival anyway. But like with Katy as Sally Bowles, please and thank you. Perfect note to end on.

Katy, thank you so much for coming and for talking with me again. You have to come back. and I cannot wait for that. The final, final thing I just have to ask is for you to remind my listeners in your most fierce, most badass, most boss babe, voice, possible that height is just a number, not a limit.

Katy Sullivan: Y’all height is just a number. It's not a limit.

Jillian Curwin: Always Looking Up is hosted by Jillian Curwin and edited and produced by Ben Curwin. Please make sure to rate, review, and subscribe and follow on Spotify so that you never miss an episode. Follow me on Instagram @jill_ilana and the podcast @alwayslookingup.podcast for updates and check out my blog JillianIlana.com for more content about what it is like to be a little person in an average sized world. Thanks for listening. See you next week.

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