Squirmy and Grubs speak at NKU, shine light on realities of life with a disability

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In our society, many people would look at couple Shane Burcaw and Hannah Aylward and see disparities that make them incompatible. But why is that an acceptable norm? 

That’s what Burcaw and Aylward aim to rectify.

Burcaw and Aylward—Squirmy and Grubs on YouTube—are an interabled couple and content creators who share their story and pushback on ableism through advocacy on issues like accessibility, inclusion and relationships. Burcaw has authored three books about his experiences having spinal muscular atrophy; the couple is currently working on a book together about relationships and disability.  

Burcaw and Aylward visited NKU the evening of Nov. 7 to speak about their story and career, an event funded by a grant awarded to the Supported Higher Education Project. The event, hosted in the Student Union ballroom, was open to anyone in the community. 

The idea to host Squirmy and Grubs was the brainchild of Danielle Adams, a member of the SHEP program, and Katie Dempsey, a peer mentor volunteer for the program.

Dr. Missy Jones, founder and director of SHEP, explained that alongside SHEP program coordinator Emily Hellmann, the Leadership, Education, Advocacy and Dis/Ability in a Diverse Society microcredential was designed last spring. Part of earning the microcredential involves completing a project that forwards inclusion and helps build inclusive communities. 

Adams and Dempsey ideated the event for their project, which was intended to create a real-world impact in promotion of inclusiveness by inviting the community to learn Burcaw and Aylward’s unique story firsthand and tear down misperceptions about disabilities.

After presenting the project idea in the spring, Adams and Dempsey said they were unsure if the event would ever actually occur, until Jones reached out to them in the summer informing them that Squirmy and Grubs had been booked to speak at NKU. 

Fast forward to the night of the event, and brief introductions from Jones, Dempsey and Adams were followed by Burcaw and Aylward taking the stage, speaking for about an hour about their background, experiences with ableism and difficulties with accessibility.

Encouraging the audience to laugh at some of the ludicrous interactions the two had to share, the atmosphere was lively but educational. The idea that life with a disability does not render it less valuable or enjoyable was a key theme, and for the two as a couple, it was stressed that they are able to enjoy marriage just as any couple would.

But despite equal potential for quality of life for people with or without a disability, people living with a disability still face systemic and social barriers. Burcaw, recalling personal stories, talked about his consistent battles with inequitable air travel, accessibility to buildings, education plans and medical care. 

But Burcaw is conscientious in pondering the potential roots of ableism. On their YouTube channel, he said blatantly rude and hateful comments are common; however, he also said that many of his run-ins with ableism through the years seem based on lack of education rather than contempt. 

At the end of their talk, Burcaw and Aylward fielded audience questions.

Adams and Dempsey addressed the audience before wrapping up the event, challenging everyone to use what they learned from the event to formulate and commit to an action that advances inclusiveness in their communities, furthering the cause of creating positive change with the event. 

“What society has taught [people] about disability gets blown out of the water when you have folks who just demonstrate something very different from society’s expectations,” Jones said.

The authentic model set by Burcaw and Aylward is a message to audiences that disabilities are only hindrances set by societal myths. 

Jones explained that removing the common negative connotation of ‘dis’ from how we conceptualize disabilities is integral to creating equality and inclusiveness for people with disabilities.

“Too often we think about disability as meaning that you can’t do, because of that prefix in front of the word,” Jones said. “It’s about what they can do and looking at possibilities, potential; creating opportunities for people to be able to live their full lives.”

Debunking the common perception in society that someone with a disability gaining inclusion warrants praise—“disability porn” as Jones referred to it—is an obstacle in eroding the barriers of inequality for people with disabilities. 

Bridging the inequalities that make certain areas of life cumbersome for people with a disability in the first place is a major step in reframing how disability is viewed in broader society. 

After the event, Burcaw and Aylward sat down with The Northerner to discuss their position as social media stars and disability advocates. 

What does it mean to be an interabled couple?

Hannah Aylward: Interabled generally means a relationship in which one or both partners have a disability of some kind. I think relationships like that have come with a certain set of experiences. People who use a wheelchair have a certain set of experiences in relationships. Relationships like ours have a certain set of experiences. So when we say, you know, this happened to us in a restaurant, someone prayed over Shane in a restaurant, or someone asked me if I wanted bubbles from my boyfriend. You know, it’s easier to just say, ‘in an interabled relationship stuff like this happens’ versus saying, ‘in a relationship where one person has a disability and the other person doesn’t.’ So we just use it as shorthand to talk about the reason we’re experiencing these things.

How would you guys describe your style and approach to advocating for the issues?

Shane Burcaw: I think that our emphasis is on humor to help make the topics of disability and ableism more approachable and easier. These are kinda taboo things in our society. People are uncomfortable to talk about disability, to ask about disability, but if we can make them laugh and feel comfortable, that means you really dig into the heart of the issue.

Why do you think it is such an overlooked and uncomfortable issue for people? 

Aylward: I think because it’s not seen in our media a lot. In people’s general daily lives, they don’t see disability a lot and when they do see it, it’s often portrayed negatively in movies and TV shows and books. Even like newspaper articles, it’s usually portrayed negatively. And also, people don’t want to offend, because they don’t have a lot of experience. They feel uncomfortable talking about disability because they don’t want to say the wrong thing. We hope that our videos give them that experience to feel a little bit more confident in using the word “disabled” and you know, knowing a little bit more about it.

As media creators playing the role of informers about disability issues, how does it feel to have such a large following of people that look up to you and are guided by your content?

Burcaw: It’s a bit daunting and a little bit overwhelming at times. But we love and feel very grateful for the opportunity that we have to inform and educate. You know, we’re providing you experience and knowledge that hopefully will make people more open-minded and aware of disability issues. So it’s a privilege to be doing what we’re doing.

Aylward: In our daily lives, we don’t see the people that we’re making videos for. When you make a video, when you post it online, you don’t see the people watching it. We get comments and stuff, but coming to events like this and actually meeting people who say like, ‘I’ve watched all of your videos for years!’ It makes it feel a lot more real that there’s actual real people watching our videos.

What is the best way that any person can recognize prejudice and ableism in their daily life and address it to create positive change?

Burcaw: Embracing the fact that everyone is different. We all have different strengths and weaknesses and disabilities and abilities. And remembering that disabled experience is not a bad or a negative experience just because they have a disability. Oftentimes, in social groups, like a group of friends, if you hear your friend say something ableist or negative about a disabled person, speak up and say, ‘Hey, that’s not cool.’ And maybe send them to our channel or other resources. The people that you know are where you can have the biggest impact.

Aylward: I think just keeping accessibility in mind when you’re out in the world, it’s helpful. When I started dating Shane, I started noticing the places that I’ve been going: my favorite coffee shops, different places that I would go had a step or were inaccessible, things that I had never noticed before I was actually thinking about it. And then once you notice those things you can actually do something about them. So even just keeping an eye out, you’re going to notice things that you didn’t before.