8:56 AM PST, December 3, 2021
The pitying stares and condescending comments still infuriate Hannah Burcaw. Her husband, Shane, confined to a wheelchair since he was 2, is inured to it.
The interabled couple, who married last year, host a hugely popular YouTube Channel, “Squirmy and Grubs,” which has nearly 900,000 followers. The comments range from outpourings of support to the just plain cruel.
“We get hundreds of comments every day that are horrible,” Shane told Inside Edition Digital. “People telling us that our relationship must be horrible. That Hannah’s life must be terrible. That I could never be a good partner or that we’re faking it,” he said.
Shane has SMA, or spinal muscular atrophy, a neuromuscular condition that causes all of the muscles in his body to be very weak. “It affects people in different ways, but I’ve used the wheelchair my entire life,” he said.
The couple’s latest project, designed to show that the disabled are human beings, is the creation of a music video by artists who all have spinal muscle atrophy.
“Spaces,” sung by James Ian, debuted this month and was commissioned by biotech firm Genentech. The music video includes Ian singing and short clips of folks with SMA going about their lives. Included are snippets from the couple’s wedding.
Ian, a Los Angeles-based musician, also has spinal muscle atrophy, though his form of it is less severe than what Shane lives with.
“Genentech originally approached us with this idea to bring together the SMA community and to write a song,” Hannah explained. “At first we thought maybe they had the wrong number,” she said.
Shane grins. It was like, “are you pranking us?” he said.
But the company explained how the process would work. “We would be part of the brainstorming of what the song would be about, so that made a lot more sense,” Hannah said.
“The artistic direction,” Shane interjected.
“Yeah,” Hannah said. “We weren’t going to be performing the song,” she said, laughing.
“I was like, you do not want us to be singing,” Shane piped in.
Being part of the creative process was “really cool,” Hannah said.
The song is about “feeling like you are not seen by other people,” she said. “But it’s a really positive song and it’s a message to both yourself and to other people, that you are worthy, you are seen.”
The couple launched their online channel to show what daily life is like when one person is disabled and the other isn’t. They are funny, blunt and rarely mushy. Their video adventures include amusement parks, restaurants and road trips.
Shane is also the author of books about his condition.
After they announced their marriage last year, the naysayers to their nuptials posted comments including, “Is he rich or something?” He’s not. “This is some kind of joke,” wrote another. Nope. “But for real though … does she also have another partner for having sex with?” asked another. Not that Hannah knows about.
While brainstorming for the music video project, “It was really interesting,” Shane said. “It became very clear that all of us feel like we are treated very differently in society. We are often overlooked.”
That treatment most bothers Hannah, who is able-bodied.
“I do get angrier than Shane does because he’s so used to it,” she said.
“That was especially true when we first started dating and I was seeing these things happen for the first time and I would get livid. Shane would be like, ‘It’s literally been happening my entire life, you can calm down.’
“We’ve sort of met in the middle and like how we deal with it, but we definitely just laugh about what happens,” she said.
To Shane, it is a journey of small steps towards a very large goal.
“In all of our work, our YouTube through this song project, we’re trying to change that behavior in the world,” he said.
“It is really frustrating when people don’t see me as their equal,” Shane said. His hope, Shane said, is that their efforts, and this new song, “will make people realize that I’m just like them and they can treat me like everyone else.”