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Episode 19: Inclusion Activist, Artist, and Pioneer – Jamie Petrone



Jamie Petrone Jamie Petrone is a renaissance woman with many talents and achievements under her belt. She is the Executive Director and Founder of THISAbility, a performing arts conservatory and professional theatre company, cultivating inclusion in the arts. She is also the Executive/Musical Director for Tabor Arts in Branford, CT, and for numerous productions through The Westchester Sandbox Theatre and Queens Theatre in NYC. An Actresss as well, Jamie is the subject of an award winning documentary: “And…Seen” as well as appearances on Madam Secretary, Law & Order SVU and the Today Show. Not to mention that she water skis, rock climbs, and is a professional wheelchair dancer. She will be performing at our No Barriers Summit during Opening Ceremony and leading workshops throughout the weekend.

Jeff and Erik  connected with Jamie to hear her story and how her drive and grit has led her to become such an accomplished actress, activist, dancer, and founder of THISAbility, a performing arts conservatory and professional theatre company, cultivating inclusion in the arts.

At age 19, Jamie was given a misdiagnosis and experienced a terrible reaction to medication that led to semi-paralysis and confinement to a wheelchair. After such a devastating blow, Jamie chose to fight back. Listen to Jamie discuss her musical and artistic trajectory and how she became a well known face and name in the performing arts community.

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Episode Transcript

Jamie: Everything that I do, stems from my truth, and the truth is my disability doesn’t define me. You bring that into every aspect of your career, so whether it be an audition, whether it be directing, whether it be teaching, you bring that into that. If this doesn’t define me, it doesn’t have to define anyone.

Erik: It’s easy to talk about the successes, but what doesn’t get talked about enough is the struggle. My name is Erik Weihenmayer. I’ve gotten the chance to ascend Mount Everest, to climb the tallest mountain in every continent, to kayak the Grand Canyon, and I happen to be blind. It’s been a struggle to live what I call a no barriers life. To define it, to push the parameters of what it means, and part of the equation is diving into the learning process, and trying to illuminate the universal elements that exist along the way. In that unexplored terrain, between those dark places we find ourselves in, in the summit, exists a map. That map, that way forward, is what we call No Barriers.

Erik: Today we meet Jamie Petrone, a renaissance woman with many talents and achievements under her belt. Currently the executive director and founder of THISAbility, a performing arts conservatory and professional theater company cultivating inclusion in the arts. She’s also the executive musical director for Tabor Arts in Branford, Connecticut. She’s the subject of an award winning documentary, and has appearances on Madam Secretary, Law & Order: SVU, and the Today Show. Not to mention that she is also an athlete, who water ski’s, rock climbs, and is a professional wheelchair dancer. She’ll be performing at our No Barriers Summit in June, and leading workshops.

Erik: Jamie Petrone, we’re really excited to have you on our No Barriers podcast. It’s so exciting. I mean, it’s interesting, in our community, we kind of started out with a lot of athletes and extreme sports, and adventurers and things like that, and we soon realize that to really grow this community in a broader way, it’s not all about those things. It’s really about the arts, it’s about beautiful music, and art, and plays, and singing, and just the breadth of life and experience. So really, in the last five years, we’ve been really bringing in more arts into the No Barriers community, and it’s been incredibly fulfilling.

Erik: You represent a total pioneer in the arts, and that’s why we’re so excited to talk to you today. You’re an actor, and a singer, and you’re coming to our summit to do a variety of workshops, and speak to our group June 13th to the 15th out in Lake Tahoe.

Jamie: Absolutely. Well, I’m thrilled to go. I’m actually am an athlete first. So, before all of the arts and all of that-

Erik: Really?

Jamie: Yeah so, before I was in a wheelchair, I was an athlete, and after I’m in a wheelchair I’m an athlete. So, I do water skiing, I do rock climbing, I do hand cycling, I do all of that. Before I was in the wheelchair I was the batting state champion for my softball team.

Jeff: Can you give us a little bit of a back story on where you came from and how you ended up in this juncture in your life?

Erik: Well yeah, and I also sold you short, because I know I called you an actor and a singer, but you’re also very well known for your dancing.

Jamie: Yes, I do wheelchair dance, I love wheelchair dance-

Jeff: And a piano player too, by the way, Eric.

Jamie: Yes, I do. Yep.

Erik: Wow.

Jeff: She’s got that left side of her brain working way better than you and I do combined.

Jamie: It might be working better than the rest of the brain, I’m not sure the rest of it works so well, but we try. So yeah, my story, in college… I was going into my sophomore year of college, and I had an allergic reaction to a medication. We had a very strenuous beginning of a semester. We would have audition, after audition, after audition. I happened to be playing for three weddings at home. I was piano for three weddings at the same time. So, I had butterflies in my stomach, I think, and you had to do a routine physical to start your year, and when I went they asked if there was anything wrong. I said, “No, I just have butterflies in my stomach. My stomach’s a little off.” “Oh, well let’s check that.”

Jamie: They were a little bit dramatic about it, and they said, “Oh, I think that there’s something wrong. I think you might have an ulcer.” So, they sent me over to immediate care, and the doctor over there put me on Zantac, which at that point was not over the counter, it was prescribed. So, I took that back then, and never being sick in my life I didn’t really ever have any big illness that I needed anything for, so not having that, I didn’t realize that I was allergic to it. So, I went back to the doctor I think three weeks later, and I had pustules all over my legs. I had these blisters, and I said to him, “I think that I’m allergic, or something’s happening here.”, and he said, “No, I think that you are having an infection inside. I’m going to send you to another doctor.”

Jamie: I ended up on seven different medications. These medications were all counteracting each other. When these medications counteracted each other the hives would go away, or the pustules would go away, so you [crosstalk 00:05:48] couldn’t really tell what was happening. I went home in November for my sister’s wedding, which I was playing and singing at, and I danced that whole night. You’re up, and you have heels on, and you think, “Oh, my feet are just hurting, because I danced all night.” Well, my feet started swelling up, and then things started happening.

Jamie: By the time I had gotten back to school, I was really in bad shape. I woke up out of bed, and I tried to get out of bed and realized I couldn’t feel my legs. So, I literally rolled out of bed. Somebody carried me down to the nurse, and they ended up sending me home. They didn’t know what was happening down there. It was a pretty horrific moment. I ended up coming home, and here-

Erik: Jamie, let me stop you though, but what’s going through your brain when that happens to you? I mean, we have a lot of folks in our community bad stuff happens to. I mean, where’s your brain at?

Jamie: It’s in a panic mode, I think. You literally go into this… It’s almost like the adrenaline rush of something. It’s like this panic happens, but then, wait, I’ve got to get through this. So, that takes over, and when I got sent home, and they told me this was textbook, and they told me what it was, that this is Stevens-Johnson syndrome, and that for most people this is fatal, it was just in my… I think in my whole being, “No way. That’s not possible. So, I’m fine, I’m fine, I’m going to make this through.”, and you tell yourself, you convince yourself that you’re perfectly fine. In my head, I never thought I was going to ultimately be in the wheelchair, use the wheelchair full-time. I thought that I was getting up again.

Jamie: So, I went back to school, and I was like, “No, I’m definitely going to walk again.” I had a friend in school that was like a big brother. Well, I was pretty lucky in school, because the whole basketball team seemed to be like my family. They were big brothers to me. They would carry me to class when I couldn’t get to class. So, I had one particular big brother, Al, that would be like, “Nope, you’re going to get up, and you’re going to walk. You’re going to go to the gym with me. We’re going to do all of this.” So, in my head, I was pushing forward to walk, but at the same time, I was in the school to be an actress, so that is very competitive just to begin with.

Jamie: So, I didn’t want anybody to know what was happening, because I didn’t know what was happening. It was all of the sudden I would be walking, and I’d hit the ground, or something would happen and I’d go into spasm, and I wasn’t familiar with anything. I just didn’t know what was happening to me. I did not have a diagnosis, so I ended up being told to leave school and come back when I was better, because you can’t be an actress in a wheelchair, is what I was told. I told them that, “I got sick here, and I wasn’t leaving. So, you’re going to have to deal with me.”, and they did the best that they could, and I ended up graduating from there in four years.

Jamie: It was traumatizing, honestly, because all of those years it was this fight for everything. Fight to get a role. Fight to make sure that nobody knows what’s happening to you. Fight so that you can walk again, and it just became this huge part of my life that I think was… it was almost a defining moment for me that part of my life. When he said, “You can’t be an actress in a wheelchair.”, I was like, “You’re crazy, I’m totally going to be an actress in a wheelchair, what do you mean?”

Erik: So, this is your acting coaches, your professors saying that you can’t do this, you shouldn’t do this?

Jamie: Yeah.

Erik: People actually do that, not just in the movies?

Jamie: Oh yeah, they do this. This is actually more regular than not. I mean, [crosstalk 00:09:40] was the head of the music theater department, and he had a hard time wrapping his mind around this. I mean, I think people deal in fear. I think people react in fear. They don’t know what to do with you, so their first reaction is, “Well, you should come back when you’re better, because I know how to deal with that. That’s a safe zone for me.” So yeah, it was really, really tough.

Jeff: Was this the first incident, obviously, where you had to manufacture the things that are the most important to you, acting and the arts in general, where you had to take these things you loved so much, and make them adapt to where you were being, like with this sudden change being in a wheelchair and having to deal with all these medical issues, you almost had to take the thing you loved and change it, so that it could fit this puzzle that you were currently living in, is that… I mean, that just adds a whole nother level of difficulty in how you’re handling this illness, right?

Jamie: It does. I don’t think that that happened for me then, I think that happened for me years later. I think that happened for me when I ended up in the wheelchair. So, there were years, there’s probably about six years from college until I ended up using the wheelchair full-time that I thought I was going to keep doing what I was doing. So, I was going to… I would go on tour, and we would tour the country, and let’s say we went to somewhere that it got really cold, I didn’t realize back then that all of the sudden I would go into spasm, and I couldn’t walk, and I couldn’t stand up the way that I was able to on stage.

Jamie: So, we had to adapt that, all of the sudden I would have to come out on something that rolled, because I couldn’t walk onto the stage, but it would happen in the middle of a show. So, it was just like, “Oh wow, okay, I’ve got to adapt this.” So, in my head, it was just transferring it to make it accommodate what I was able to do before. Not until I got into the wheelchair did that change for me where I knew how to navigate this world. I knew how to navigate the casting world walking, I knew how to do everything, acting-wise, audition-wise, standing, walking, doing all that, but in a wheelchair, it’s very, very different, and the casting people receive you differently. Everybody receives you differently.

Jamie: So, while I started that for a moment, to be able to go into those rooms with the wheelchair and just sing my heart out, and while I think it changed peoples perception, they would always be typing, and really into it, and they’d say these great things like, “Wow, you were incredible.”, and then not really know how to work it into the show. That made me have to transfer this and go, “Okay, I need to approach this differently now. I need to be able to make this, not only for myself, but for other people.” If I knew how to navigate that whole stage walking, and now I’m kind of thrown into the water and it’s sink or swim, it’s like, you have to be able to know what to do.

Jamie: There weren’t resources out there then. I didn’t know what to do. I didn’t know how to handle it, and I ended up meeting the person… I met people that were placed there specifically to guide me on this journey, and the one person that I met early on was my director for my documentary. So, I have a documentary called And… Seen, and there’s a play on words there, because as actors we always go, “And scene.”, so the end of the scene is there, but “and seen” is more or less, they see my wheelchair before they see me. So, it’s really a play on I need people to be able to get past that and see beyond that wheelchair, and see the person in the wheelchair that has these capabilities to do things that you didn’t think were possible.

Jamie: So, she started to navigate that journey back then, by giving me the resources, like the Kennedy Center had a big program there that they would have people of different abilities come in, and we changed the terminology. I don’t like to necessarily refer to it as a disability, I think that it’s mixed abilities, because we have all of these mixed abilities that you can do, if you would just get past the device that I’m using.

Erik: So, you have… in the Hero’s Journey, they call it allies, right? You had these incredible mentors that stepped up and they were the opposite of the naysayers, they were the believers, and they helped launch you forward a little bit, give you confidence, give you some tools, that kind of thing, right?

Jamie: Absolutely.

Erik: Because it seems like you’re fighting a huge uphill battle, you’re a square peg in a round hole, right?

Jamie: Yes.

Erik: I was thinking about as you were talking back in college, you were probably in this transitionary time when you’re fighting, and you’re really unsure of yourself and what your capabilities are, and so it’s like this perpetuating cycle, where probably professors have no idea what to do with you, you don’t really even know what to do with yourself, you’re questioning yourself, and it just sort of becomes a cycle. So, to get through that period must be really, really hard.

Jamie: Yeah, there were a lot of dark moments, I think, in that period, because I would be in a dance class, and then transition into a dance audition after college, and it was very much the same. I could get the combination of the audition in my head, but my body wasn’t doing it. So, I was like a beat behind, and it would be so frustrating because you’re in a room with these phenomenal dancers that do this all the time. Now, you can’t get your body to do it, so it’s very, very frustrating. I remember being taken out of an audition for Meet Me in St. Louis. I had gotten in this moment where it was just like everybody kept going, and my body wasn’t doing it, and I knew all of the steps.

Jamie: So, I stepped out, and the director came out and she said to me, “What’s going on with you?” I told her, I don’t like to say this often to directors, because it’s a scary place, and I don’t want to scare the director, but, “This is what happened to me.” She said to me, “You have so much beyond that one step behind that you are, that I need you to focus on that and not stop. You have these amazing gifts, and you have to keep going with that.” You never get that from a director in an audition in a professional setting. So, things like that helped me through, but there were a lot of moments before I got to that, that were just like, “Now what? Oh God, I don’t know what to do next? How do you navigate? Where do I go? What do I do?” So, there was a lot of dark there-

Erik: Why didn’t you just quit and go in a new direction?

Jamie: I don’t think quitting is in my DNA. I think that that is something that started from being an athlete, young competitive. I don’t think that I have that in my nature, and so I’ll embrace the struggle of it, and it’ll get really, really dark, but I won’t ever embrace that other side of it, where it’s just like, “Forget it, I can’t be an actress then.” No, I think that’s what I’m supposed to be here to do. So, I have to do that.

Erik: How did that frustration… Do you remember when that frustration turned into energy, into innovation, into finding some ways forward?

Jamie: Yeah. So, one of the workshops that I had done with Liz Ortiz, who is my director for the documentary, there was a panel, and there was a man on the panel who actually is now on my board for THISAbility, and came to the No Barriers Summit with me last time we were in New York, and he ran the workshops with me, David Sabella. He [crosstalk 00:17:40] one of the most profound statements, one of those most profound pieces of advice before I really knew him to that capacity, and what he said was, “Always state your truth.” I know it seems like a really simple statement, but it’s profound because everything that I do stems from my truth, and the truth is my disability doesn’t define me. If that is your truth, you bring that into every aspect of your career. So, whether it be an audition, whether it be directing, whether it be teaching, you bring that into that. If this doesn’t define me, it doesn’t have to define anyone. There’s so many things that make me up that this wheelchair becomes a characteristic of me. It doesn’t become who I am.

Jamie: So, when I saw this… There was this transition period where I would begin teaching more than I would be performing because of those auditions being so difficult to navigate, and so within my students I found that … I had 30 students at one point. 30 students a week would come in, and they would be getting ready for auditions, and they’d be getting ready for all of these different things that they were taking on. Whether they were professional, whether they were just starting out, or whether this was like, “I’ve never spoken before, but I’m going to learn how to do this, they all had this need to be taught how to audition, and to be taught how to do this. I knew that that’s something that I did very well back then. So, what became a need for my students were these workshops.

Jamie: And then, as I did it in the wheelchair, and I started to do the wheelchair dance, and I started to take on all of these different elements with the mixed ability community, I became part of what’s called the I AM PWD, it’s the Inclusion in Arts and Media for Performers with Disabilities. We got to sit in front of the movie directors, the television writers, everybody on that side of the table, and we got to have these round table discussions with them. I think one of the most important things that came out of that was somebody saying to me, “Well, we want to have more people with disabilities come in the room, but we don’t find that they’re trained. We don’t see trained actors with disabilities.”, which is baffling to me, because I was part of a community that I can name 100 of them… just right there, I could say this person, this person, and they just weren’t seeing them get into the door, because they weren’t getting the audition, so at that-

Jeff: What do you attribute that to, do you attribute that to discrimination, or just access?

Jamie: I think both. I think that that’s their mindset. Their mindset was that these actors aren’t trained so we’re not going to call them in, but we were trained, we didn’t know, because they didn’t open their mind to that. So yes, it’s both, and there’s definitely discrimination in there, big, big time. I mean, even the access to the buildings that you need to go in to audition. I mean, they would be upstairs, and you’d be stuck, and you’d crawl up the stairs. I mean, not only does that make you… That sets you, to begin with in the audition, that sets you below everybody, you’re now crawling up the stairs, and you’ve got to now go into a room where everybody’s standing and walking, and you’ve just crawled upstairs. It doesn’t make you start that audition out with confidence. So, you’re already not going to do your best. I don’t know that many of the times they were even looking at us, considering us. I think it was more like… You know have you to fill a quota sometimes?

Erik: Yeah. Right.

Jamie: At that point, I think it was filling a quota. So, when we would go in there it was like, “Whoa.”

Erik: If you’re going for a rehearsal… I mean, excuse me, an audition, and you have a director who’s picking somebody, it seems like there’s been a transition over the last few years where you’ll see this traditional white role, and you’ll see a black actor or actress, or… it’s like it doesn’t have to be so literal, but at one point it was more literal, I’m assuming. They’re like, “Oh, that leading role can’t be in a wheelchair, because that just doesn’t fit our idea of the role.” Is that probably one of the barriers that you’re fighting through?

Jamie: Yeah, I think society is starting to change in that way. I think that we are a little more opened minded. Now I think it’s the fear of how. How do you do this? How do I put her on stage? One of the things… There is a show on Broadway, Wicked, where they have an actress… a character that’s in a wheelchair, but the stage is raked, so I can’t manage that-

Jeff: The stage is what?

Jamie: Raked. So, there is a slant on that stage. It’s built with a rake, so if I was to do that and actually be in the wheelchair, I don’t know that I can manage that. So now, you have to think, that’s money-

Erik: That is the definition of irony, isn’t it?

Jamie: Yes, yes it is. Yes.

Erik: So, a role for a person in a chair, yet a person in a chair can’t do the role.

Jamie: Pretty much, yes. Now, I haven’t known of any actress that’s gone in there, that had the wheelchair, and they said, “Oh, let’s try this.” I almost auditioned, because I have some friends that are in Wicked. So, we got to that point, and then I got very, very sick. So, I didn’t get to finish that, but that’s not uncommon. That’s so common. You think, “Wow, that’s pretty shocking.”, but it’s not really shocking, because that is the battle, that is the barrier we always have to come against.

Jamie: So, we have to show them that no matter what, if I’m coming in the room, I have to be your solution. I cannot show you my weakness. I have to show you the strength, because you have to see how we can maybe manage this, because that’s money. Ultimately, that’s money out of their pocket, they’ve got to change this design. If they paid for it once, it would be done, because those stages would be… and you’d be accessible. Now, there are some stages starting like that. There’s Queen’s Theatre now that is state of the art, and it’s got ramps, and it’s got all of that accessibility. But of course, like anything else, it’s a slow process.

Erik: Are you, as a pioneer, because I really see you as a huge pioneer in this world, and you are trying to change the mainstream world, but that’s hard, I would imagine, in what you’re describing, but also maybe, is that partly why you create your own niche? You create your own acting community, and THISAbility? I mean, because if the niche doesn’t exist, then you’re just fighting this uphill battle, or create your own community that then creates a room, a space, for this thing that you’re envisioning?

Jamie: Mm-hmm (affirmative). So, yes. It creates that space, but we also… This is my career. It’s not a hobby, this is something I have to make money for. So, if I’m not going to be able to work and get that through a show somewhere else, I have to create it. So, it was twofold. It was to create THISAbility, THISAbility is my organization. Creating that so that people would learn how to navigate this, and providing the resources so that they knew what they were up against, number one, and then how that we can change peoples minds. So, if we can start to change those perspectives now, by the time that these kids get out there, this isn’t going to be a sink or swim moment. They’re going to know what they have to offer. They’re going to know they have more to offer than what these people are even seeing. So, I think, for that aspect of it, it was create your own so that we can teach people how to do this.

Jamie: Then, the other side of that, is show them what we can do, because if I now have a performance where mixed abilities are in there, and they’re proving you wrong, they’re showing you how amazing they actually are, because I know amazingly talented people, then you’re going to start to go, “That resonates with me in a different way. Why does that resonate with me? I don’t have a disability.”, but there’s something in your life that it will connect to, and something it will resonate with, and that’s how we change directors minds, we change societies minds is by showing them that we do have it in us, we are capable.

Jeff: I’m a little curious about the balance that it requires from you to accept… acceptance of your chair, that it’s a part of you, like you said, it’s just like your brown eyes. It’s a part of you. So, you’re accepting the fact that you are not going to run sprints back and forth on the stage, but yet, it still is a part of your character, but you don’t want it to define you. Do you see where I’m going with it? So, it’s that, “Yes, this is me, but it is not going to define me.”

Jeff: I always reflect on Erik’s process too, and when he fought blindness for his entire adolescence, and then when he really started to blossom as an individual was when he accepted his blindness, and we’ve heard that on this podcast many times from people who went through a transition, and struggled, struggled, struggled, and then said, “This is me, I’m going to ride with it, but yet it doesn’t define me.” Can you just dive into that a little bit on that slipper slope, or just that balance that you have to embrace?

Jamie: It is a slippery slope, and it is tough. I don’t know if I’m at the place of acceptance fully, because at the same while I’m doing all of this I’m still at spinal cord recovery centers, and rehabilitation, and I’m still trying to walk, but in the meantime, if it is who I am, and if that is what I’m going to be in the wheelchair, that’s okay. I have to… I still live fully. I still… I embrace those parts, because if you don’t embrace what you are right now the possibilities are always there, but if they don’t come through, then all of the sudden you’re living against this. It’s another… it’s almost like you’re in competition with the circumstance, and you can’t be in [crosstalk 00:28:25] circumstance.

Jamie: Yeah, you have to be able to say, “I’m going to be my best self, no matter what circumstances, because it doesn’t define me, that means in the chair or out of the chair I’m the same person.” So, I have to be able to say, “I was an athlete then, I’m going to be an athlete then, because why not? I was an actress then, I’m going to be an actress now.” So, you have to find that, you have to manipulate these circumstances to make them as adaptable as you possibly can, but in that process, you have to realize that nothing gets refined without a process.

Jamie: So, there are those dark places, there are those places that you don’t know if you’re going to get through. There are moments that we all… that we’re human, we have these moments where we’re frustrated with it, and “Oh my gosh I don’t want this anymore.”, but that’s part of the process, because once you get through that process then you have a different perspective. I think that’s why I call my wheelchair dance my story Coal Diamond, because you start at coal, but the refining process makes you diamond, and when you get to that point, the diamond, you recognize that all of that process was necessary to get there.

Jeff: That’s cool.

Erik: How did you develop, how did you innovate your dancing technique, and I’ll preface that by saying, for me just interviewing amazing people is just such a personally gratifying, I mean, I know it helps our community and our audience, but helps me too. So, this is my chance to say, how do you do this? Describe it so a blind guy can understand what you’re doing up there, because I’ve been in the audience, and people were trying to describe it, but things are happening so fast.

Jeff: Let me also put the caveat in that Erik is the worst dancer that’s ever walked the planet-

Erik: No way, I learned how to twerk at the last summit.

Jeff: … he’s really, really, really, really, really bad, so as you describe your dance for him you might have to dig into some really [crosstalk 00:30:25]-

Erik: No way, there’s internet video of me twerking, and I’ll be happy to show that to everyone.

Jeff: No one wants to see that. All right, so Jamie, yeah.

Jamie: So, I think wheelchair dance was the one moment where it became real for me. It became going into that room… At first, I didn’t want to do it, let me put it that way. I was a dancer, I tapped, I did everything up on my legs, doing everything … Everything went together. The concept of a combination, getting the combination, and feeling it in your body, however you feel it in your body, and then articulating that was natural to me. So, you don’t lose that because you’re sitting in the chair. That natural process stays with you, but now you have to figure this out differently, and it’s not just the chair, it’s for any disability. So, if you were able to see, and now you’re not able to see, or say you never were, we still have to make it available to your body, so you still have to feel it.

Jamie: If you can begin by feeling it in your body, and then find your way of articulating it where now I’ve got to cross the stage where I was leaping, now I’ve got to cross that on wheels, so how do I do that and make that flow? When I first went into that first wheelchair dance room it was a little bit discouraging for me, because I think it was the moment where I said, “You have to embrace this now.”, and I didn’t want to embrace that. I didn’t want to dance in the chair. I wanted to dance with my full body, and for me, that was a major transition moment. It was like, “Okay, now, let’s redefine this.”

Jamie: So now, I was sitting in a class, and the choreographer teacher, she was showing us how to take ballet and what we did up with our legs, now we have to transform that to our arms. It has to be the movement has to now transfer to the other part of your body. So, whichever… and it wasn’t just for wheelchair’s, it was all different abilities. So, there were blind people, there were deaf people, how do you feel it in your body? Instead of hearing it, do you feel it through your feet? Do you feel those rhythms coming? So, there’s different ways to translate it for different disabilities, but the wheelchair dance itself, I think her and I together figured out that the best way for me to embrace this whole different space was to do it through my own story.

Jamie: So, that’s where I started developing my story. My story started at that first class where now we have to talk about what got you to this place, and so my dance, the first part of my story is to spoken word, because that is my story. So, you can hear it… Whether you can see it you’re going to hear it, whether you can… if you can’t hear it, you’re going to see it. There’s different ways to visually appreciate it, or to appreciate it in whichever way you can, but for me, it’s the outlet of telling my story. Once I began to let it out and embrace my story with the dance, then the rest of it became… I had a greater appreciation for it.

Jamie: Now, I wanted to tell different stories. I don’t want to just tell my story. My story is my story. I live it every day. I want to tell these other stories. So, I started dancing in different ways. I did… I was part of the promo for the Push Girls series, and that was hiphop, and that was people flipping over us in Times Square, and we were doing [crosstalk 00:34:03] dance there. So, different styles of dance, but once I started to do it, I realized I loved it just as much as in the chair as I did up. The feeling of it was the same. It was just now different. I’m just transferring it in a different way. So yeah, I love it. It’s one of my favorite things to do is to dance in my chair.

Erik: You’re going to be performing at the summit too.

Jamie: I will, at the opening ceremonies, yeah.

Erik: Yeah, so if folks want to see, better show up.

Jamie: [crosstalk 00:34:32] if you want to hear this crazy story.

Jeff: One of the things we do in medicine is we always say, “See one, do one, teach one.”, and then once you become a mentor, everything pivots once you become a mentor. It sounds like you’re a mentor. Do you… Yeah, you’re teaching now a lot, so how has that transition been, and is that just as fruitful as I would imagine?

Jamie: Yeah, it’s actually probably more fruitful. One of the workshops we did… At the last No Barriers Summit in New York City we had a workshop, and we were singing Seasons of Love, because we thought that that was a song that people would recognize, and so-

Erik: I was in that workshop. I loved it.

Jamie: Good, good. Oh, good I’m glad. Well, we thought that with those lyrics to that song, 525,600 Minutes, if you could see what that… if we could understand what meant to each person, then that’s going to take the process into a different place, because as actors we have to personalize everything. So, teaching workshops like that now all of the sudden the atmosphere changed, and we get more out of it than you get out of it, because all of the sudden we’re learning everybody’s process, and that goes into our own process. So, I think workshops like that define it in a different way. When I work with children with different abilities, they come to the table with this… It’s like they don’t… When you’re a child, I think, just as an actor everything is more free. It’s, “I’m here and you’re going to accept me, and that’s what I am.” That in itself is what we have challenges with whether we’re disabled or not disabled.

Jamie: As adults, we just have challenges with that. All of the sudden we become… These inhibitions take us, and we’re just like, “Oh, I can’t, I can’t.”, and we’re scared, and all these things come, but they don’t have that. They have that freedom. So, you get to work with people that might have a mixed ability, but don’t care and don’t see it, and all of the sudden these great things come out of that. So, it feeds your soul. I mean, honestly, it really feeds you to be able to direct in different ways, and then to be able to direct people without disabilities.

Jamie: I think that’s another side of it is that, when you get to be in a setting where you have mixed abilities so it’s inclusive where some people have disabilities and some don’t, and they receive the same thing, or one side receives more than the other because they’re learning from that other, I think that’s pretty amazing. I mean, it really is an amazing thing, especially with THISAbility, to be able to take that and say, “No, we’re not going to approach this with our disabilities, we’re going to say this is this ability, we have these abilities, and you’re going to see them, and here we are.”

Erik: Well, I loved that clinic, because it was for anyone and everyone. You broke the process down. At first everyone’s completely inhibited, and mumbling, and then you broke the process down like breath work, and try this, and get the meaning behind the song, and think of a story as you’re singing it, and all these very cool specific things, and it just said to me, “Wow, this is so No Barriers, because we can break our lives and our journeys down into a process that we can wrap our heads around. We are going to be in a better place.”

Jamie: Awesome. Well, just hearing that is amazing that you got that out of that from me. That’s tremendous that you took that whole process and said, “Now we can break it down this way, this way.”, because that’s what we were hoping that everybody got out of that.” We don’t really know, everybody’s like, “Yeah, it’s good.”, but you’re not sure. So, hearing that from you is amazing. So, I appreciate the opportunity.

Erik: I want to change tacts and just ask you about, were you on Law & Order?

Jamie: Yes.

Erik: So cool.

Jamie: Yeah, I was on Law & Order-

Erik: I know you were on a ton of stuff, but come on, Law & Order, that’s pretty cool.

Jamie: I’m on Madam Secretary, actually, now.

Erik: Now, that’s right, I saw that as well.

Jamie: Yeah, so it’s pretty cool when those shows will embrace that. For Madam Secretary, when they first called me I was in the hospital. So, they called me out of the hospital, it was, “We need a person in a wheelchair, could you do this?”, and I was like, “Just another day or so, sure I’ll be on set.” So, I’ve been there for five seasons, so I love that-

Jeff: How uplifting that must be, here you are in the hospital, and you’re like, contemplating what life’s going to look like, and you’re like, “Here, we’ve got a job for you. See you on the set.”, and you’re like, “Sweet, I’ll be there.”

Erik: You were also on a cool play that I saw called The Healing.

Jamie: Oh yes, yes.

Erik: That looked really cool, tell us about that really quick.

Jamie: The Healing was an amazing, amazing experience. So, for The Healing we did it with a company called Theater Breaking Through Barriers in the city. They have been in existence for over 35 years now, I think, Ike Shamblin started that as Theater for the Blind, and then it transitioned into Theater Breaking Through Barriers. We did a play called The Healing that was written by Samuel Hunter, and the process of that was amazing, because what he did was the concept of it… it was not written about our disabilities, but it was written for our disabilities, because in the show, every… There was only seven and I think only one of them didn’t have a disability.

Jamie: So, while we all entered this space, it was like… John McGinty played my boyfriend in the show and he is deaf, so it was really writing it for how everyone in that room feels when he enters the room, because where is the communication? Can you communicate with him if you can’t sign, and if you can sign, how well do you sign to be able to translate that? So, there was a lot of things that Sam really took into his conscious and we rewrote the script, and rewrote the script, and we did rewrites every single day up through previews. So, we were getting a new script every day. I had to learn sign language in three weeks, and he kept changing it, and I was like, “Could you keep it the same? Just [crosstalk 00:40:48] opening, please.” So, it was fun.

Jamie: It was an amazing process. Each of these actors in the show are phenomenal actors. The thing that we heard most is, “After we started watching, we forgot about your disability, and we just watched the show, and it was just amazing.” We got the New York Times critic pick for that show. That was incredible, amazing, I loved it, and I hope to do that show again with THISAbility. I hope we bring that back, because that experience itself was just… I don’t know anything that was comparable to that, where you just got to live that every single night on stage, and you got to go beyond the disability, and act with everybody that had mixed abilities, and nobody noticed.

Erik: Congratulations.

Jeff: Yeah, that’s awesome.

Jamie: Thank you, thank you.

Erik: How close do you think we are to… you talk about inclusion, to full inclusion? What are you giving it? 20%? Where are we [crosstalk 00:41:47] in the acting world, the dancing world?

Jamie: We’re not there. We’re definitely… we’re on the lower side of that percentage, but there are a lot more people aware now. Awareness is huge, first of all. I mean, the thing is that not everybody is acting in fear or discriminating, some people are just ignorant to it, they don’t know it. So, you have to have this balance of awareness. So, I think that the awareness side of it is becoming a little more prominent now. We’re seeing more roles. For me, I see more roles. When I look on television and in the auditions, my manager will send me different auditions that are now looking specifically for somebody in a wheelchair.

Jamie: So, that’s a difference than some years ago, there were none. So, I think that it’s definitely creeping it’s way in, but it’s very slow. But as a society as a whole, I think there’s a long way to go. I mean, the more that we can do to embrace this part of the journey where we need to make people aware, we need to do as much as we can and be as vocal as we can, without bringing in necessarily the bitter side of it, but I think as a society, it is moving in the right direction, finally.

Erik: Yeah, I hear you. When I was thinking about being a teacher I was… I got a masters degree 4.0, I had my friends in that position had dozens of job offers, I had two, and I was like “Okay, guess I know where I’m going.”

Jamie: Right, wow. Yeah.

Erik: Yeah so, I understand, but you’re making it happen, and you’re carving out that path, and if people want to know, say there’s a young actor or dancer who’s struggling with some kind of challenge and they want to learn about you and they want some mentorship, they want a community, where do they go? What do they do?

Jamie: Yeah, so my organization is called THISAbility. We have a website thisabilityarts.org. That’s T-H-I-S-abilityarts.org, and on there you can become a member for free. What we are doing with that is we are creating a database of performers that casting directors will then be able to come in and say, “Okay, I need this type of performer. I need this.” There is a place called Alliance for Inclusion in the Arts, where you can find a lot of stuff out, but right now they’re not as active as they once were. So, we are trying to create this database so that you, let’s say as an actor you have a headshot and resume, you want to put that up and create your profile, you can do that so that people are now knowing that they can come here.

Jamie: Not only do you get that side of it, the casting side of it, you will also get the training side of it, because now you’ll see all these workshops. They’re for adults, they’re for kids, they’re for everybody, and different workshops that we are starting to really put them out there. We’re right in that beginning process of where we’ve done workshops for years, but now we are trying to go into specific theaters that are inclusive, and bring them to that community. So, you can go there and become a member. There’s contact information on there. You can always reach out to me.

Jamie: We’re developing an inclusive show that we’re going to put out there too, so once we start making these announcements then people can start… You can come and see the show, or you can come to this workshop. We are also going to be online, so it’s not going to be like you can only come if you’re in New York. We’re going to have virtual classrooms, and we’re going to have lessons that you can take online privately. So, it depends on what you want specifically. But always, if you come to thisabilityarts.org you can find us on Facebook, on social media, we’re out there, then you will definitely find people that will mentor, that will teach, that want this for you.

Erik: I got goosebumps, you’re making it happen, and I love that. So, thank you for all your contributions.

Jamie: I appreciate you, everything you guys do, I mean, amazing. There’s, for me, I think with No Barriers the first thing that grabbed me was, “What’s within you is stronger than what’s in your way.” That whole lifestyle is amazing to embrace, and just to collaborate with you, partner with you, anything that I do with you guys it’s just… it’s so fulfilling, and I really, really appreciate what you do for this entire community and world.

Erik: Well, I think No Barriers is trying to get a little glimpse of what that map looks like, and you really helped us today to see it, to see some pieces of what that map is. So, really cool.

Jeff: Yeah, we’re grateful to have you as a part of the community for sure, Jamie.

Erik: So Jeff, what do you think about that interview?

Jeff: Well, Jamie’s a… She’s kind of the true definition of driving down the road, and having a turn in the road that was a little unexpected, that I think we all have. When you look at her medically, what happened to her medically, it’s Stevens-Johnson syndrome is a very, very rare condition, and then to have it manifest the way it did for her is one in 20,000. I don’t know what it is, but it’s crazy, and she must’ve just had these moments of just feeling like, “Why me? What’s going on? What did I do to deserve that?”

Jeff: Like so many of the other alchemists that we’ve talked to, she is the definition of a pioneer, and finding a way to integrate the things that are so important to her, to continue with trajectory, in spite of that veer in the road. I’m in awe of her, and it’s a really remarkable thing, and I just hope that she finds time for me at the summit, because I think she’s probably pretty popular when it comes time. So, I’m going to somehow sneak in ahead of you, and get on the top of her dance list.

Erik: I love the fact that it’s so illuminating… Well, I guess I’d say this, instead of saying I enjoyed it, it was more interesting to understand the reality and the gravity of how hard it is when you’re in a chair, and your whole life is changed, and you’re trying to figure out how to operate and how to get comfortable, how to move forward, and then everyone else has no idea what to do with you, and you’re just pushing this weight uphill. You’re trying to change an industry and how hard that is.

Erik: I just want people to really stop and focus the fact that this journey is hard, and through that idea of Jamie continuing to search and reveal her truth, she kept persisting, and not only broke into the world of acting and dancing, but also created her own niche, and her own community. It sort of seems like she was doing both of those things simultaneously, and has found this incredible life, and I think that’s incredibly prescriptive for people to understand a bit of that process.

Jeff: Yeah, a lot of people are going to find… I mean, I know she was at the summit before, but every life that she can get in front of she’s going to affect positively. So, I’m excited to spend some time with her this summer in Tahoe.

Erik: All right, June 13th through the 15th, come and see amazing pioneers, and beautiful art, see Jamie, and [crosstalk 00:49:29]-

Jeff: And watch Erik Dance.

Erik: Watch me dance. I don’t know whether it’s people are coming for Jamie or my twerking. Probably [crosstalk 00:49:39]-

Jeff: No, I know the answer to that, let’s just leave it at that.

Erik: All right, with that, No Barriers, thanks everyone.

Jeff: See you next time.

Dave: Thanks to all of you for listening to our podcast. We know you have a lot of choices about how you can spend your time, and so we appreciate you spending it with us. If you enjoyed this podcast, we encourage you to subscribe to it, share it, and give us a review. Show notes can be found at nobarrierspodcast.com. Special thanks to The Dan Ryan band for our intro song, which is called Guidance. The production team behind this podcast includes producers Didrik Johnck and Pauline Schaffer, sound design, editing and mixing by Tyler Kottman, graphics by Sam Davis, and marketing support by Karly Sandsmark, and Jaimie Donnelly. Thanks to all you amazing people for the great work you do.

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