The dance world is a vast and diverse community that touches so many hearts and breaks boundaries from Olympic debuts to defying the expectations of individual abilities. Despite dance’s versatility, it can be easy to limit our understanding of dance to those with the most prestige or the best technique. Artistry, visibility, and storytelling have always been at the heart of the performing arts, and dance is no exception.
A great example of this is the role performing arts such as dance play in sharing stories and spreading awareness for communities that might otherwise be overlooked or excluded. We spoke with Avery Roberts and Kelly Berger, members of the Community Outreach and Engagement team at Cure CMD, to explore the relationship between creative outlets and the disability community, specifically diseases that fall under the umbrella of muscular dystrophy (sometimes referred to as MDs).
As Congenital Muscular Dystrophy (CMD) affected individuals, Kelly and Avery work to tackle misconceptions surrounding disability through their outreach and just by living their lives. Avery explained, “CMD is a rare genetic disorder of the muscles that causes them to break down faster than they can repair or grow.” She emphasized that CMD leaves people like herself and Kelly as full-time wheelchair users who rely on mobility devices “as [their] main source of independence.”
While many would likely assume otherwise, CMD doesn’t stop either of them (or many of the individuals living with CMD) from living exciting and active lives. “We’re foodies. We’re avid travelers. Kelly is definitely a major concert-goer,” Avery said. “I’m a dancer. I dance at a majority of the well-known theaters in NYC, and I was the first wheelchair user to dance on the great stage of Radio City Music Hall as well as among the first few wheelchair users to feature in a nationally televised live production when I appeared in NBC’s Annie Live!.”
People are aware MDs exist, but that knowledge often doesn’t go further. “That’s kind of the minimum of what people would know, the general public,” Avery said. She outlined that there are a variety of acquired and congenital (meaning the affected person was born with the condition) diseases under the MD umbrella. These diseases have subtypes, genes, and conditions that affect people in a variety of ways. With such a wide spectrum, Avery and Kelly’s aim is to not only raise awareness among people who do not have MDs but to help people who may be working toward a diagnosis feel more informed and less alone, especially when diagnosis journeys can be long and frustrating.
Avery shared that she was diagnosed around age 7 which is pretty average, but Kelly experienced what the rare disease community calls a diagnostic “odyssey.” Misdiagnosed with a different MD at age 3, it wasn’t until much later that Kelly received her CMD diagnosis. “I think I was like 28 before I got the official confirmation.” For both Avery and Kelly, sharing these experiences is part of helping bring the disability community into the conversation and making them visible not only in terms of their illness but also how they navigate various activities and public spaces. A diagnosis can make it feel like a person’s future is filled with negativity, but they want people to know that very active lifestyles are possible.
“Something that Kelly and I always say is showing others that we’re relevant in today’s world and that we are still empowered and we’ll continue to navigate, unfortunately, a world that is clearly not built for us,” Avery said, “and I think that what we try to do is not only change society’s perspectives on the many misconceptions that come with the disability community but also show others that you can still find a way to be a part of today’s society, even if it consists of having to make a space for yourself that is not already or create a seat at the table that is being withheld.”
This means being able to adapt and be flexible, and with that, Avery shared, comes a kind of built-in creativity. “We dislike saying limitations because that’s not how we view our diagnosis. We think that it doesn’t define us and that every single person defines what it means for them and their specific situation. You define how it limits you.”
Perspective is important. Kelly shared that she thinks looking at the ways a person can adapt to do the things that interest or excite them lends more possibility than focusing on how disability might make something longer or harder. While no one plans or chooses to be a wheelchair user, Kelly wants people to realize that it is not the end of doing amazing things. “It’s important to embrace our limitations in a way,” Avery added to this. “We all have different abilities whether you live with a disability or not, and I think that people don’t realize that every single person can be disabled, will be disabled once in their life, and if you aren’t today, you could be tomorrow.”
“I think that I view every situation as a way to advocate for our rare community,” Avery said. When she gets on a stage to perform, does an interview, or travels the world, she is working toward awareness and positive change. Kelly agreed, highlighting that changing the perception from negative to positive is incredibly important. For people to see themselves represented in media from TV shows to movies to Broadway is valuable. This doesn’t just mean telling stories about people who experience these conditions, it means casting them as well. Avery wants people to know that putting someone on screen or on stage in a wheelchair is not the same as letting someone with a disability play a role. Authentic casting is a major part of awareness.
Our interview with Avery and Kelly came on the tails of Kaylee Bays’ appearance on Season 18 of So You Think You Can Dance. Kaylee shared her journey with Ehlers-Danlos Syndrome (EDS) on SYTYCD as well as her ability to continue to use and adapt dance to challenges caused by living with a connective tissue condition. Avery called Kaylee’s appearance on the show “groundbreaking.” “It’s unfortunate that it just happened this week,” she said, “but I think our community is very energized from it, very empowered that people are taking the time to include us. Often the conversation that’s brought up is inclusivity and inclusivity done right.” She wants to see people push the conversation forward into what it means to do it right in the performing arts whether it’s for a person performing or even attending a performance like a concert or a musical.
Alongside casting, telling different kinds of disability stories is important, too. “The [entertainment] industry is already really hard to begin with. It’s certainly intimidating whoever you are,” Avery said. “I think that any time you put another layer upon what you are bringing to the industry, that is outside the box, I always say that inclusivity is meeting me outside of that already defined box.” To step outside of this box, Avery reminds people that disability is not plot conflict or a device for pity.
Education on rare diseases and how they impact individuals leads to more comfortable creative environments for everyone. “As I grew up and kind of settled into my own body, I learned that anyone can dance and that it truly is what fulfills me the most; I was able to tap into a community that I knew I wanted to be a part of,” Avery shared. “My choreographer said once…’ Disability is only relevant when disability has to be relevant.’ We bring that along with us through our work, and we truly believe that anyone can dance no matter what form of movement you have available.” Now, Avery knows that not only can she dance, but she also has a unique way of exploring her art with her audience. “I’m able to bring the audience on a journey that they probably weren’t expecting.”
Some of Avery’s worst experiences she says have been with the most talented and recognized choreographers. A lack of education and belief in dance’s ability to change to meet the needs and abilities of whoever is performing creates barriers that collaboration and discussion can dissolve. “Sometimes people are willing to be a part of [discussion], and sometimes they’re just not.”
Avery suggested that dance created for a disabled body and then translated to an abled body, instead of the other way around which is more typical, is one way that making dance open and accessible might be possible. “I have come across people who have danced with their eyebrows. I have come across people who have danced with their eyes, with their feet, every body part imaginable, and I think that it’s not like ‘Oh they just utilized their eyebrows,’ they dance. Period. Not what they specifically dance with, and that just shows, again, that anybody can dance.”
Inclusion in the arts extends beyond those performing on and off stage or on screen. As an avid concert-goer, Kelly has experienced many of the challenges that come with being part of the audience. “Access to tickets is one of the hardest things, getting a hold of ADA tickets that would work for me,” she shared. “That is a huge problem with many major artists out there. Trying to actually not only get tickets but get the limited number of ADA ones they allot. Then I would say the ability to actually experience it, so getting to the venue, getting physically inside the venue.”
Like Avery’s passion for dance and live performances, Kelly sees her work as a way to make these experiences more possible for anyone who is interested. Plus, she wants to experience it herself, as many times as possible. “I just love being surrounded by people who are as passionate and love the same songs and music as you…as well as just hearing the music so loud and powerful that it’s moving…I don’t know it’s just like an awe feeling for me that I keep, obviously, wanting to experience over and over again.”
Educating yourself and spreading awareness happens on many levels, and Avery and Kelly are just two people leading the way. They lead a webinar series that focuses on topics that are often ignored or underrepresented. Kelly shared that they especially like planning talks that focus on life transitions like starting college or a new job or a new relationship. “We focus on topics that we feel are often overlooked but at the forefront of people living with these conditions,” Avery said. She emphasized that their talks are not just for people in the CMD community, but anyone who might relate or want to be educated on a range of topics from family life to traveling that are impacted by physical disabilities like CMD.
Something everyone in the arts knows is that anything is possible, and making things possible requires creativity and navigating different challenges that arise. This is true for the disability community in ways that many don’t know or expect. “There are so many variables that we have to navigate and go around…,” Kelly shared, “trying to do things most people would but just adapting, learning to literally roll with it even though sometimes it gets difficult, annoying, and frustrating but we still want to participate in society and be a part of things.” Thankfully, collaboration is also a major part of creativity, and possibility exists in the conversations we have to find solutions, make changes, and raise awareness.
You can keep up with Avery and Kelly through their webinar series available on Cure CMD’s YouTube channel. You can also keep in touch with Avery and Kelly on their personal Instagrams: @avery.nicole916 and @thekellyberger.
