Having amassed nearly 900,000 subscribers to their YouTube channel, Minnesota vloggers Shane and Hannah Burcaw have been expanding their disability advocacy to new media. For their latest endeavor, the "interabled" couple (Shane has a disability, Hannah doesn't) share their story through an innovative pop song created by, and for, people in the disability community.
For the past several years, the Burcaws' chronicling of their daily lives through their "Squirmy and Grubs" (the couple's pet names for each other) videos is just one of many ways they've been working to normalize disability. When they're not filming themselves, they're doing speaking engagements and writing projects. Shane, who was diagnosed with spinal muscular atrophy (SMA) as a baby, runs a nonprofit that assists people with muscular dystrophy. He also recently started serving as a consultant for the writers of the new NBC drama "Ordinary Joe," on story lines involving a character with SMA.
The Burcaws, whose prior musical experience was limited to singing their videos' theme song, aren't adding "rock star" to their resumes just yet. ("We should not sing," Shane admitted.) Their role in the musical collaboration was to help conceive of, and portray, the song's messages.
The project was initiated and funded by the pharmaceutical company Genentech, makers of a drug used to treat SMA, which invited a small group of advocates and artists living with SMA, including the Burcaws, to brainstorm the song's theme.
The ideas that came out of the session, which focused on the ways people with disabilities often feel overlooked and undervalued by society, became the theme of the song, Shane explained. "We in the SMA community all know that we're out here living awesome, vibrant lives, but the world doesn't always see that," he said. "This song is a reminder that we are worthy, and we are awesome and talented."
One of the group's participants, James Ian, a Los Angles-based singer/songwriter with SMA (a less severe type than Shane's) used the brainstorm notes to write a song, "Spaces." The Burcaws attended Ian's recording session and music video production in L.A. and have shared behind-the-scenes footage of both events on their vlog. The Burcaws' recent wedding was portrayed among the music video's montage of images showing the family life of several members of the SMA community.
Hannah said her favorite lyric from "Spaces" is, "You're gonna love the song that you're going to sing," because of how it reflects the power of role models. Lack of representation of people with disabilities remains widespread, Shane added, especially on the music industry's biggest stages — something he hopes "Spaces" can counteract.
Shane said he finds the line, "I'm so much more than what you see, or what you bargained for," personally meaningful. "I often face people selling me short or assuming I'm not capable of certain talents," he explained.
He said he hopes that listeners lured by the song's catchy melody ("it's a slammer") will then absorb its deeper message, and reflect on ways they might help make the world more accessible to and accepting of people with disabilities.
"Our dream would be that it performs amazingly, and everyone wants to listen because the song is good," he said. "And then along the way, they'll realize or learn the meaning behind it. And that will hopefully start conversations about disability and the value that we all have as people."
