Most Likely Not To… the musical

most likey jmaes ian cast


“Most Likely Not To…” is a-first-of-its-kind musical comedy centered around the difficulties of traveling with a disability. The musical was created in collaboration with members of the SMA (spinal muscular atrophy) community and the SMA My Way program founded by Genentech, a biotechnology company dedicated to discovering and developing medicine for people with serious and life-threatening diseases.

ABILITY Magazine’s Jennifer Woodall was joined in a virtual interview with Genentech’s Adam Pryor, creative director of the show, and singer-songwriter James Ian to discuss living with SMA, preparing for opening night, SMA My Way and advancing societal discourse around disability, visibility, and representation.

Jennifer Woodall: James, can you tell me a bit about SMA?

James Ian: Sure. SMA is degenerative, and so it affects muscles pretty much throughout the entire body. There’s various types of SMA, and I’m a type 3. I believe about 10% of people with SMA have my type, so it’s on the rarer side. SMA is a rare disease, it affects I believe one in 6000 births. My type is characterized sometimes as adolescent or adult onset, because I’ve had SMA my entire life, but the symptoms really become more prevalent as you hit puberty, which was very much the case for me. I had always kind of exhibited symptoms, but you really couldn’t tell. Then I had a growth spurt in high school, around the age of 14 going into 15, and I started to fall a lot more. My parents started to notice more symptoms. So with me, I have weakness throughout my body. I used to be able to run and use stairs, and now I’m no longer able to do those things. I fall sometimes, I can’t get up on my own. I have difficulty getting up from a chair that’s of regular height. It affects all the extremities.

Types 1 and 2 are typically characterized by from birth or you’re using a wheelchair. Type 1s I think, always need assistance breathing, and then type 2s, sometimes they walk when they’re younger, but then they pretty much require the use of the wheelchair from an early age throughout the rest of their life. So, it’s characterized just by a progressive weakening of all your muscles.

most likley joel manuel and
Jessy Yates and Joel Manuel

Woodall: I listened to “SPACES”, it’s a beautiful song. Did you write it?

Ian: Yes, I wrote it. It was informed by a larger brainstorm with members of the SMA community. We had a brainstorm, took all the ideas and thoughts that people wanted to express, and boiled that into a song. I had two producers who are pros in the music industry that helped refine it, but I was the primary songwriter on that. The larger community, for sure, helped create that song from start to finish.

Woodall: Yeah, it’s beautiful. Were you always into performance, or do you feel like this is something that you came into later in life after you found out that you had SMA?

Ian: I’ve actually always been into it. I was into it before I found out I had SMA. I actually was a child actor. I was on a tv show when I was eight or nine, and I was in a couple of commercials. I had an agent that was very well known for representing child actors, so I started doing that at a really young age. I also started doing music at a really young age. I started taking piano at age of five, and I was singing even before then, so it’s something that’s been in my history for a long time. When I did get my diagnosis, I did think that those passions were off limits to me because of the really bad portrayals of disability in media. That’s something I had to wrestle with and come to terms with as I got older, but always loved it and was always involved.

Woodall: That’s wonderful. We interview so many people with various different disabilities, and a lot of them in the entertainment industry talk about that same sort of thing, where they come in with this idea of, “I’m never going to be able to perform. I’m not going to be able to do this,” and then they end up finding their voice, and they find it so freeing.

check this out

Ian: Yeah. It was cool too, because SMA is progressive, it’s actually been really beneficial to go back and see the difference in how my body has changed. I could do stuff when I was a kid, like scenes where I had to run for a bit or get up off of a couch, and I did it with such ease back then. I’m kind of lucky in that regard where I can see that, because it’s hard to remember. I don’t really remember what it is like to run or anything like that, but I can see it on camera, so it’s kind of interesting in that respect.

most likely not to final rgb

Woodall: What is the inspiration behind creating “Most Likely Not To…”?

Adam Pryor: I’m creative directing the musical. I’ve been working with James for a number of years now on Genentech’s SMA My Way program, which was a program created to authentically represent members of the SMA community. SMA–spinal muscular atrophy–is a neurodegenerative disease. The company (Genentech) I work for makes a therapy for SMA, and it’s part of my job to make sure that we go beyond those medicines. A lot of what SMA My Way is, is interacting and working with community members and representatives like James to create programs that help address how they want to be seen, and what programs and resources are most relevant to them. So through that, we created our past two programs which were an original song and music video called “SPACES”, which James wrote and sang, and then a fashion show at New York Fashion Week in September of 2022, which was a first of its kind show called Double Take that featured the SMA community on the runway.

The inspiration for “Most Likely Not To…”, which will be a first-of-its-kind musical comedy, was to authentically represent members of the community on stage and advance societal discourse around disability, visibility, and representation in a different area. So, it was music, music industry, fashion, and now on stage. The play really focuses on what it’s like to live with SMA and especially when it comes to traveling. We wanted to advance discourse around disability and travel and just the issues that members of this community and the disability community at large have. The musical was actually inspired by some real examples of participants of the fashion show who were trying to get to New York for the show and ended up having these crazy travel issues that impacted their trip there. So, we knew that the next thematic area we wanted to pursue was around travel and this representation conversation.

Woodall: What do you hope to achieve with the musical? What are you hoping that the musical inspires in other people?

Pryor: I think predominantly, we want the musical to showcase members of the SMA community as talented, creative, multifaceted individuals. Also, we want to help move this next frontier of representation conversation forward. We feel like disability awareness–we’re in the throes of that conversation–so how can we utilize this program to help keep that moving forward?

check this out

Woodall: Can you tell me how SMA My Way got started?

Pryor: So, SMA My Way lives on smamyway.com. It provides various types of resources to inspire and instruct the community, and portray them as multifaceted characters and provide real resources that are relevant to them. We were trying to figure out what would a program be in working with this community, and we went straight to the source and wanted this to be community led and community sourced, and this is what we heard–we want to have a one stop shop that represents who we are.

Woodall: James, can you tell me what it’s like to prep for opening night, and what goes in to that? In addition, are there differences preparing for that when you have SMA versus when you don’t?  

allie williams and james ian

Ian:  Yeah, great question. So for part one of your question, in terms of just prepping for opening night, it’s like heavy rehearsal. In a non-musical setting, like a dramatic theater experience, you’re memorizing your lines and you’re trying to bring the emotion and step into what the character is really feeling–what the character is really about. In the actual moments when the characters are interacting with dialog and other characters, you’re trying to meet those moments authentically and honestly and really capture what someone’s feeling and what they’re trying to express. With the musical, there’s an extra layer there of you want to sound good; you have lines, you have lyrics to memorize, you want to hit your notes. I feel like it’s pretty daunting to act in a live setting because you can’t do cuts and intakes. It’s all right there, so there’s not a lot of margin for error. Then you add a musical piece to it, too, so it gets even more precise.

I would say the prep is really intense. On top of lines and the emotions, you’re trying to learn lyrics and hit your notes and then also convey the emotion of the song. It’s really, really intense. I know me personally, I’m extremely thorough, and so I’m pretty meticulous. I’m going over everything with a fine-tooth comb, almost obsessively. To answer your second question, with SMA, we have to worry about our bodies. Fatigue with SMA is a very real thing. Weakness is a very real thing. My arms get tired. My legs get tired. So, for me personally, I know it’s okay to have those things that SMA presents. I’m going to be cognizant of watching my steps and hoping that I don’t trip and fall or if my arms get tired or weak, trying to account for that. It definitely adds another layer of physicality and protecting your energy and just being safe and making sure that you don’t harm yourself. For the folks who use wheelchairs, hitting your marks with your wheelchair and trying to be accurate and precise with your stage marks, I think that’s a very big factor, too.

most likley shannon devido and
Darilyn Castillo and Shannon DeVido

Woodall: What is it like developing a show like this where you go from idea to putting pieces together? What is that process like?

Pryor: It starts with bringing on the right team, making sure that all these functional experts are represented, then it just starts with an idea. In terms of the process that we like to implement when it comes to SMA My Way and how it’s community led, it really starts with these group conversations with members of the SMA community to help inform everything that we’re doing. So, it really was an open dialog and an open conversation with the SMA community about what is the story, what are these characters like, what is the look and feel of the creative, what are our songs addressing. I think that it’s about pulling the right team and making sure we have our eyes set on what the purpose is.

Woodall: James, have you heard about abilityE?

Ian: I’ve definitely heard of ABILITY before, but I’ve not heard of the entertainment piece.

Woodall: So abilityE is a free networking website where people within the entertainment industry that identify with having a disability can come together, and they’re able to get casting from there, they can get in touch with people within the industry that are looking specifically to hire real life actors or real life singers that actually identify as having a disability. It’s an awesome network. I like to tell the people that we talk to that are in the entertainment sector about it because it’s an awesome resource and it’s not something that we really see in other places. We do this thing where we have reels that you could participate in if you wanted to, that we put on our abilityE website and yeah, it would be just a great thing all around.

Ian:  Thank you so much. I did not know about that, so I really appreciate that. Thanks, Jennifer. I’ll for sure check that out.

check this out

Woodall: I really appreciate both of you guys taking the time to talk to me today. It’s been awesome to hear more about this show and what you guys are doing with SMA My Way, and just bringing awareness.

Pryor:  Well, thank you so much. Thanks for the interest. I’d like to say how excited we are about the musical, the creative, the songs, the script are just so good. I personally am just really grateful to get to do work like this. We will be debuting some of the songs before the show as well as some of the creatives. Thanks for your time, and James, thanks for everything–always.

Ian: Thanks for having me, and thanks, Jennifer. Really appreciate it. So cool to be a part of this project. So thank you, Adam as well.

sharing is caring

we did our part - now do yours and share

like a good neighbor, share

Related Articles: