I have had the good fortune of being able to meet many amazing people, whether they are guests on my radio show, or are interviews for my column. But one couple in particular, who I had first spoken with a few years back, not only inspired, encouraged and transformed the lives of my audience, but myself as well. Indeed, they are guiding lights for us all in that they found a way to overcome the obstacles and challenges that have raised hurdles in their paths, and have gone on to live a life that is Better Than Before in so many ways!
So please meet, once again, Shane and Hannah Burcaw, YouTubers, writers, breakers of boundaries, world travelers, disability advocates and delightfully recent newlyweds.
As I mentioned at the time of our first interview, what makes their story truly exceptional is that Shane was born with spinal muscular atrophy (SMA), a genetic disease that affects nerve cells in the spinal cord that control muscles. Over time, it takes away the ability to walk, eat, or breathe, and affects people in different ways, depending on the type and age group, as well as other factors.
However, Shane and Hannah never let this stand in their way of obtaining happiness. The three of us recently reconnected as they were preparing for the debut of Most Likely Not To…, a musical on which they served as both executive producers and writers, in addition to having cameo roles! Supported by Genentech through the company’s SMA My Way program, Most Likely Not To… offers a fresh and startling look at life with a disability that’s relevant to everyone.
We met on a recent afternoon and talked about the show, also catching up on what has been happening in their lives over the past few years:
Jane: Last time we spoke, you were planning to get married. Now that it’s official, tell me about the wedding!
Shane and Hannah: It was like nothing we ever imagined, and we don’t mean that as a cliché! We were gearing up to be married in the fall of 2020, but a global pandemic had other plans in mind. Unfortunately, we had to postpone our wedding for family and friends. Instead, we decided to do the official ceremony privately, literally in our backyard, with our officiant conducting over Zoom. It was surreal, but lovely, nonetheless. All we really cared about was becoming husband and wife! Thankfully, we were also able to have a much smaller family reception the following year. The braised beef short ribs over mashed potatoes were the star of the night, at least in Shane’s eyes.
Jane: You have been busy lately in the development of a new musical that debuted on Rare Disease Day called Most Likely Not To… How did you get involved?
S and H: We’ve been involved with Genentech’s SMA My Way program for many years now, and each year they basically leave it up to us—our group of talented and creative members of the SMA community—to dream big about how we might elevate the voice of the SMA community on a national level. This year, we came up with the idea of putting on a musical comedy in NYC to explore themes of identity, ableism, and accessibility.
Jane: What is the show about, and what does the name mean?
S and H: The show tells the story of a high-powered fashion designer (who has SMA) traveling back home for her 20-year high school reunion. It’s a story about confronting old enemies and old stigmas. It’s about claiming one’s identity and learning to be proud of it. These might sound like huge, heavy topics, but it’s all portrayed in a funny, ridiculous way.
Jane: There’s a big focus on travel in the show. Why is that?
S and H: It meant a lot to our writers and collaborators that we use this opportunity to shine a light on the severe inaccessibility of air travel for people with disabilities. It is currently a dehumanizing, dangerous, and painful experience across the board. That needs to change, but the only way it ever will is by making more people care about the unfair and unjust issues that exist.
Jane: What’s the craziest travel experience you’ve ever had together?
S and H: There have been plenty of wild travel experiences, but maybe none more ridiculous than being stranded in Salt Lake City for an extra day because the airline couldn’t find a plane large enough to accommodate my wheelchair. The punchline is that I have an extremely small wheelchair that should easily fit on any commercial flight, so I’m not sure where all those planes were hiding on that day.
Jane: What do you hope people will take away from this show?
S and H: We hope everyone leaves the theatre with our fantastic musical numbers stuck in their heads. We also hope their faces are sore from laughter. More so, we hope that the show encourages conversation and self-reflection regarding the themes of ableism and inaccessibility.
Jane: You also recently moved out to Los Angeles—what prompted the move?
S and H: Both of us are thoroughly incompatible with temperatures below 50 degrees, so the Minnesota winters were starting to crush our souls. We also have many friends and career opportunities in LA. So far, we’re loving it! And we’re excited and grateful to be able to keep spending our summer months back in Minneapolis.
Jane: You’re still going strong with your YouTube channel, Squirmy and Grubs, and you now have more than 1.6 million followers. What originally prompted your channel, and why do you think it continues to grow so much?
S and H: We started the channel as a hobby to share some travel we were doing at the time. As our audience grew in shockingly unexpected ways, we realized we had an important opportunity to use our platform to educate the world about the realities of disability in a relationship context. We’re continually amazed and thankful for the growth of our channel, and we attribute much of that success to our unique mixture of humor and authenticity.
Jane: How do you both deal with all the inevitable stresses you have in your lives? Hannah, you had said you distract yourself with activities you enjoy, and Shane, you plan, organize, and strategize so that the negative occurrence doesn’t happen again.
S and H: Yes, that’s true. Admittedly, neither of these methods is perfect, but one of the beauties of a strong relationship is that we balance each other out and end up settling for solutions that both rejuvenate us and set us up for future success.
Jane: You have accomplished so much professionally—is there any big career goal you haven’t hit yet?
S and H: We’re eagerly trying to break into the TV and movie-writing field!
Jane: What’s ahead for the two of you at this very moment?
S and H: Our first book that we’ve co-written together is almost finished and scheduled to release in early 2025! It’s called Interabled: Love Stories and it profiles a bunch of amazing relationships that involve disability. There’s also many never-before-shared stories from our own life in it, as well.
Jane: Finally, as I ask all my guests, what is your advice for being better than before physically, mentally and spiritually?
S and H: We’re obviously no experts, but we’re learning that significant growth of any kind never happens easily or without serious effort, so maybe our advice is just to expect and account for that when deciding you’d like to grow in a certain area of life. But, again, we’re just two people figuring things out like everyone else.
Jane: Yes, but two people who have an amazing outlook on life. You know, Hannah and Shane, I truly believe that each of us has within us the wisdom, the power, and courage to see the light through any darkness, to develop a positive, proactive attitude that will ultimately enable us to follow our dreams and passions. Thank you both so much for validating my belief, and passing on the love and mutual support you have for each other to make us all feel Better Than Before.
Note: Most Likely Not To… is available on-demand at MostLikelyNotTo.com, and all of the music can be downloaded on your favorite streaming channels here.
