RARE Daily

Trying to Break a Leg in a Wheelchair

February 22, 2024

“Most Likely Not to…,” a musical comedy written and performed by people with the rare, neuromuscular condition spinal muscular atrophy, will make its world debut in New York City on World Rare Disease Day and be streamed live online. The show, part of Genentech’s SMA My Way awareness campaign, highlights the absurdities that people with disabilities often experience. We spoke to the show’s lead actress Shannon DeVido, and the show’s creative director Adam Pryor, about the play, living with SMA, and DeVido’s pursuit of a career as a performing artist despite having the condition.


Daniel Levine: Shannon. Adam, thanks for joining us.

Adam Pryor: Hi, Danny. Thanks for having us.

Shannon DeVido: Hi. Thanks for having me as well.

Daniel Levine: We’re going to talk about Shannon, your life as a performing artist living with spinal muscular atrophy and the musical comedy, “Most Likely Not To…” a show written and performed by people with SMA and backed by Genentech that will debut in New York City as part of Rare Disease Day. Before we talk about the show though, I’d like to talk about your career path and experience with SMA. For listeners not familiar with the condition, perhaps Adam, you can weigh in here and explain what SMA is.

Adam Pryor: Yeah, sure, happy to. So SMA is spinal muscular atrophy. It’s a genetic disease that affects nerve cells in the body and can lead to muscle weakness and impact a person’s ability to perform basic life functions like walking, swallowing, breathing. It’s classified in types by severity, and we think it’s most important to highlight in terms of the way it acts on the body. It can impact when it comes to impacting breathing. It can impact one’s ability to sing, which is sort of why we feel it’s important to talk about our musical today and the way it’s supporting the community.

Daniel Levine: How does the condition progress?

Adam Pryor: The disease is, like I said, it’s organized into types based on severity of symptoms. Those with type one would never be able to sit unassisted. And then as we get up to type two, three, and four symptoms are not as severe. So some patients are ambulatory, non-ambulatory or able to walk and not able to walk.

Daniel Levine: And Shannon, when were you diagnosed with the condition?

Shannon DeVido: I was diagnosed when I was two, but in my heart, I always knew I had it.

Daniel Levine: I take it you were diagnosed before you ever had thoughts of pursuing a career as an actor or comedian?

Shannon DeVido: No, I decided that in the womb. So it was before.

Daniel Levine: When did you decide to pursue a career like that?

Shannon DeVido: When I was a kid, I wanted to be an athlete, so that didn’t really work out so well for me. But I found theater pretty early on, and then I had a very roundabout journey to becoming an actor. I guess I went to school for music business, which is a little bit kind of in the industry, but not, so then I graduated and pursued acting, and then I found comedy and kind of landed where I’m today.

Daniel Levine: And were family and friends generally supportive of your desire to pursue a career in acting? Were you ever thought that the condition might be limiting your ability to do that?

Shannon DeVido: I think any parent doesn’t want their kid to be an actor. I think they would much rather you be an accountant. But I have a very wonderful family who is very supportive and has let me pursue this career for as long as I have. And they think I’m pretty good, Hollywood. My parents think I’m great, just if you’re listening. And I have the coolest friends in the world who are very supportive and who if I am like, Hey, you want to do this project? They’re like, Yes, when do we show up? So I am very, very lucky to have the support system I have around me, and I don’t think that I would be able to pursue this career without that.

Daniel Levine: Your acting credits include the series, High Desert, Lucky, Hank, and Difficult People. In addition to your acting, you do sketch comedy and perform at comedy clubs. People can find a lot of your work on YouTube. To what extent do you view any of these activities as advocacy?

Shannon DeVido: I mean, I think all of it is, right? I mean, I’m not very good at being on the front lines like some other very smart, wonderful people who are able to speak very clearly and just advocate in front of Congress and stuff. I advocate by being a weirdo in a comedy space, but I think that anytime you get to show representation and you get to write your own story and you get to perform, I think it is a way of advocating that disabled people live lives. They live very full lives, and they are able to share their stories. And I think anytime you get to share a story too, I do a lot of writing and that as well. So I think that it highlights a version of the world that maybe non-disabled people aren’t aware of. So it’s, I think that it’s a different way of advocating, but I do think it is bringing a light into a world that you were unaware of.

Daniel Levine: I know actors often fear being typecast. I suspect that’s an occupational hazard in your case, but as someone with a disability, is there an ideal role you’d like to get a chance to play someday?

Shannon DeVido: Yeah, I would love to be in a romcom.

Daniel Levine: Well, that’s a perfect transition, I guess, to “Most Likely Not To.” Is that a romcom?

Shannon DeVido: I would say it’s a musical. It has—well, it’s a musical romcom. It has elements of everything.

Daniel Levine: Well, Adam, you’re the creative director of “Most Likely Not To.” Can you explain what it is?

Adam Pryor: Yeah, sure. So “Most Likely Not To” is a first of its kind musical that Genentech is doing in partnership with the SMA community. It sits within our SMA My Way program, which we developed a number of years ago to create resources for this community. The musical itself sort of tells the tale of a high school graduate 20 years post-graduation, whose moved on and established herself in her career. She applies to a raffle to go to her high school reunion, her 20 year high school reunion, and wins. So she’s dealing with the fact that one, she has to go to her 20 year high school reunion, which nobody wants to do, but then sort of feelings of who she was told she was in high school, who she was in high school, start to come forward within her. And she’s reflecting on how ableism and having a disability impacted who she was in high school. And then later in life, there are six musical numbers, a partially disabled cast. Many of the cast members have SMA, and like Shannon said, there are some rom-com storylines, also, some parodies of travel and what it’s like to travel with a disability, just to try to highlight sort of what it’s like to live with SMA.

Daniel Levine: And how did the project come about?

Adam Pryor: In creating SMA My Way, like I said, we wanted to create a program that helped represent members of the community. The musical itself came about in discussions with community representatives, just sort of, we have these resources and we want to create a program. What program is most relevant to you all? How would you like to see yourselves showcased in a program created by us? And conversations around disability visibility and authentic representation kept bubbling to the top, just the lack of authentic representation of disabilities in different types of industry. Previously, we had created an original song in music video, and then the following year, a first of its kind fashion show at New York Fashion Week called Double Take. So we felt that we’d done a song first. We’ve done a live event. Why not combine the two and do a musical song live event?

Daniel Levine: Shannon, did you answer an ad in Backstage, or how did you become involved in this project?

Shannon DeVido: No. Adam and his team reached out to, this is going to sound so pretentious, to my team, who then we all had conversations about it and it sounds like a really exciting project, and they just explained what they were trying to do, and I was really, really proud and happy to be involved.

Daniel Levine: Adam, who wrote the show, who did the music for it, who directed, is this all done by the SMA community?

Adam Pryor: So, it was really led and ideated by the SMA community. We had a number of representatives, including those who were in the show, help counsel on themes of the play. And then Shannon is one of the lead writers on the script itself, and it’s really phenomenal.

Daniel Levine: And Shannon, talk a little about the character you play. What attracted you to being able to do this role?

Shannon DeVido: Sure. I play a woman named Samantha, and she is a fashion designer from, well, she’s from Philadelphia, but she lives in California now. She’s an adaptive wear designer, which is pretty exciting. And I think she’s very sarcastic and straightforward and kind of has her own challenges, but also is just a really strong person and is doing some amazing work. So it was just a cool, nuanced character that I was excited to showcase.

Daniel Levine: I think if people go through your videos on YouTube, they will see you. You are a singer too.

Shannon DeVido: Yep. Yeah. Yeah.

Daniel Levine: So, was this the first opportunity to do a full blown musical comedy?

Shannon DeVido: No, I’ve been doing musicals ever since I was a kid, and I did a movie a few years ago called “Best Summer Ever” that you can watch on Hulu. And that is a musical film.

Daniel Levine: I know there’s a scene in the play that involves a run-in with an airline while you’re trying to fly across country with a wheelchair. Global Genes is involved in a campaign over the rights of people with disabilities to fly and for the airline industry to become more responsive to the needs of these passengers. Does this speak to any particular experiences you’ve had?

Shannon DeVido: I mean, I think anytime I travel, it’s a 50 50 shot, whether or not I’m going to get a wheelchair back or just a bunch of pieces. So yeah, I mean, I would say yes, I’ve experienced some travel issues, but that’s not to say that every single person while traveling is the worst human being that’s ever existed. I don’t want to put that out there. There’s been some really lovely people who have been very receptive to taking care of my chair and the issues I might have and the concerns I might have. So there have been some lovely people. So I’m not going to just say the entire airline industry is the worst, but there has been some experiences that haven’t been the greatest. And I think that there’s a lot of programs right now that are trying to get people to be able to bring their own wheelchairs onto planes, which would just be an absolute game changer for so many people. I think that would actually open the world for so many people. There are people who aren’t able to fly because they can’t transfer from their chair. I’m very lucky that I’m able to do that, but I think that it would even mean for me, it would be so much more comfortable and easier for the people I’m traveling with, for me to be able to be in my own chair.

Daniel Levine: Adam, how can people watch the show?

Adam Pryor: Yeah, so the show itself is premiering on February 29th. It’s Rare Disease Day. It’s in person at the Time Center on 42nd Street in New York. But we will be live streaming it simultaneously, at mostlikelynotto.com. The show itself is at 6:00 PM Eastern on February 29th.

Daniel Levine: And let me just ask each of you before we end this, what are you hoping people take away from the show? Let’s start with you, Adam.

Adam Pryor: To start, I’m so grateful to be working on a program like this to help use my voice, to elevate the voice of others in my work. In the last number of years, I’ve felt really much a part of this community. I hope that the viewers have fun and appreciate the script and the amazing songs, but I also hope that it opens their eyes to what it’s like to have a disability and make them think a little differently about it. I think that we’ve done a really great job of representing this community authentically and elevating them. And I think that’s because we have been doing it with the community itself. So I’m really grateful to them. I’m really grateful to Shannon for being on board with the program as well.

Daniel Levine: And Shannon, what would you hope people come away with?

Shannon DeVido: I hope that they see themselves a little bit in this project. I mean, I think we deal with a bunch of universal topics, the life that you were in high school, how you’re different now, relationships, travel. I mean, we’re just showing it through a different lens. And then I also just hope that people have a great time. It’s going to be an hour of fun and laughter and music and just enjoy yourself for a little bit. The world’s a hard place, so just come have fun.

Daniel Levine: Shannon DeVito, actress, singer, writer, and SMA patient advocate; and Adam Pryor, creative director of “Most Likely Not To,” and public relations lead, neuroscience and rare disease for Genentech. Shannon, Adam, thank you both for your time today.

Shannon DeVido: Thank you.

Adam Pryor: Thank you so much.

This transcript has been edited for clarity and readability.

The RARECast podcast is made possible through support from the Global Genes’ Corporate Alliance. The members of the Corporate Alliance support Global Genes’ mission and programs, work to meet the vital needs of people with rare diseases, and address inequities they face. To learn more about the Corporate Alliance or how your organization can become a member, click here.


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