Living Viral: Finding Influence as a Disabled Social Media Content Creator

Engaged and Engaging

When Burcaw started his blog nine years ago, he hoped some of his ridiculous stories and vignettes about life with spinal muscular atrophy might resonate with others, and even early on, it was clear they did. He quickly built a large, growing fanbase and attracted literary agents and publishers. Among those fans was Hannah Aylward, 24, a self-professed introvert and social media neophyte.

Long before anyone knew her as Squirmy — a nickname Burcaw would later give her for her restless sleeping style — in 2016 she sent him a late-night email with the telling final words: “P.S I think you’re cute.” Thus began a year-long internet romance that led to the two moving in together and her dubbing him Grubs because of his sweaty hands. They introduced the public to Squirmy and Grubs in 2018 by rolling out their branded YouTube and Instagram accounts.

Today, the future husband and wife reach a growing community of fans together, casually engaging viewers with their easy chemistry, abundant smiles and a shared plucky sense of humor. With charm and wit, the pair finds creative ways to inform strangers about subjects that run the gamut from intimate facts about Burcaw’s condition, to revelations about the frequent insensitivities the couple encounters from strangers, to simple posts about what made them smile that week.  “The biggest driving force in our work is a desire to correct the damaging misconceptions that exist about disability. The size of our platform places us in a position to influence the way society thinks,” says Burcaw. “Beyond our message and purpose, we get to film our adventures every day and call it a career. Plus, making our videos is also just a lot of fun.”

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Both Burcaw and Aylward feel humbled by their fans’ support and the increased credibility it has given them to speak up about accessibility and inclusion. The couple has enjoyed numerous opportunities to travel and speak about their work and disability. In 2019, a production team from the Today Show flew out to Minneapolis and filmed them for a day, allowing them to share their story with a nationwide network TV audience.

Return on Investment

Thanks to their 550,000-plus subscribers on YouTube, Burcaw and Aylward are drawing a steady income from YouTube AdSense. Still, it’s not something they feel comfortable enough with to rely on as a forever plan. They also receive income from other sources, including Patreon, a membership platform where subscribers can directly support creators financially, often in return for unique benefits. “Diversifying our income has been super important, so that if AdSense revenues are low one month, we have speaking engagements, brand deals, Patreon and book royalties to rely on,” says Burcaw.

YouTube AdSense has been a strong revenue source for Sydnor and Jamison, but they feel the fluctuations and know that the money is not guaranteed. “On strong months, we start thinking, ‘Oh my gosh, we’d be able to buy a 2000 square foot home!’” says Jamison. “But then, the next month, the money is not there and we go stock up on ramen.”

Sponsorships have helped even out the couple’s income, but they are selective about with whom they partner. “We try to focus on sponsorships that align with what we are actually able to use and that benefit us uniquely as an inter-abled couple,” says Sydnor. “If it helps improve a quad or caregiver’s life and makes sense from all sides, we feel good about promoting something to our viewers.”

With a wedding later this year and a desire to grow their impact through freelance and other projects beyond YouTube, the couple feels the heat. Luckily, they like a good challenge. They are thrilled with cool gigs that have stemmed from their social media presence, like a TedX talk they did this fall and a current collaboration where they are helping produce content with a local hospital.

Corbett and Deitsch are also relying on AdSense and Patreon, and also looking to expand with partnerships that align with their core values. They are still in the red in regards to Wheels2Walking, but Corbett sees gains and is comfortable with the deficit. “That’s how startups usually work,” he says. “You gotta put in a huge chunk in the beginning and work, work, work for a couple of years until you are profitable.”

A Full-Time Job

Making a living by posting videos of your daily life may seem like a dream job, or at least a fun endeavor, and while everyone in this story makes a point of saying they are enjoying the pursuit, they were all adamant about the same thing: it’s no cakewalk. “We love having a channel, but it does take up a significant amount of our time,” says Burcaw.

Aylward explains, “I think our biggest low is just the overall struggle to constantly create. Having a YouTube channel is like an exciting dream 95% of the time, but there’s a very real mental and emotional side effect that comes with sharing our life so much.”

Managing social media and writing projects is a full-time job for the couple. They aim to upload one video every other day, which requires at least three to four hours filming or editing. Beyond that, around five hours per day is spent answering emails for backend planning from potential partners and engagement clients. The growth of their following has corresponded with a growing number of invites to events and appearances. “We can get worn out,” says Burcaw. “There are times when we just don’t feel like having the camera pointed at us, but you have to push through those moments to be successful.”

Learning to push through the grind is something Sydnor and Jamison can identify with. “Creating content that reaches and helps other’s understanding has been a fulfilling privilege, but it’s definitely a full-time thing for us now,” says Jamison.

Early on, Sydnor and Jamison hadn’t nailed down set hours, so they ended up working every day of the week and sometimes staying up till 2 a.m. to complete a project. “It wasn’t really healthy for us or our creativity, so we now force ourselves to work only from 10 a.m. to 6 p.m. Monday through Friday,” notes Sydnor.  He now does the edits on Tuesdays and Thursdays only, is enjoying it more, and has realized he has a knack for it.

Corbett and Deitsch have also discovered the benefits of a regimented schedule. As things stand, the team has designated shoot days, podcast days and regular planning meetings. Working more than full-time on things, Corbett finishes up at the gym around 11 a.m., gets to business soon after, and works until 8 or 9 p.m. On Fridays, he makes a point to end the day by 6 p.m. and to spend the weekend with his girlfriend, unplugged from social media and his work altogether as much as possible.

As the editor and behind-the-scenes guy, Deitsch does a lot of the time-intensive heavy lifting, which Corbett admits is a godsend. “It’s sick what he does, and so crazy good because he’s in it for the equity too. We both know that we are building something for a legacy that will pay off for both of us in the future,” says Corbett.

#WhatsNext

For Corbett, the future is in community. “I want to change the dialogue, and I can use the platform of Wheels2Walking to better unite people with disabilities and work around some of the dead-end quarreling amongst ourselves just because we are all different,” he says. “I’d like to be a voice that helps rally people and says, ‘Hey, wait, let’s talk about some things we have in common and unify on some of the big issues and make some improvements in things like accessibility, healthcare and getting the equipment we need.’”

He and Deitsch are excited about expanding their offerings and trying new things in their videos. “One of my favorite things to do is collaborate, so I want to meet up with others as I travel,” says Corbett. “I love learning new things about the ways other people with disabilities live, plus we get to mutually influence and introduce each other to our networks.”

Along with planning their wedding and hanging out with their new pup, Burcaw and Aylward are looking forward to continuing the growth of their YouTube channel and their social media audience. The pair are also hugely excited to be collaborating on a book, Burcaw’s fourth published work and Aylward’s first. “We are interviewing 30 inter-abled couples and profiling their love stories. It’s a huge project, but we are honored to be the ones writing it,” says Aylward.

In a similar vein, the future Sydnors are anticipating an exciting future together, both personally and professionally. They are looking at expanding beyond their social media roots to engage in more live community engagement. Having seen the potential impact of their storytelling, they want to use their skills to help others share their experiences. Still, their YouTube fans are huge in their lives and they will continue to share their experiences and raise awareness.

As Sydnor explains, “People are curious about spinal cord injury, relationships, caregiving and unique lives, and that’s OK. At the core of everything we do, is love. We want to do anything we can to support and show someone that it doesn’t matter what your circumstances are, that love is possible. That it comes in all different forms, and that’s how it should be. It’s beautiful.”