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Emily Henson

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Shane Burcaw and Hannah Aylward are content creators living in Minneapolis, Minnesota, documenting their lives as an interabled couple online. Together, they share a YouTube channel, Squirmy and Grubs which has acquired over 600,000 subscribers in just under two years, where they openly discuss their journey together as an engaged couple.

Shane, a writer, public speaker, and co-founder of a non-profit organization, has documented his life with Spinal Muscular Atrophy with humor and sincerity, showing his audience the reality of living with a disability whilst also bringing lighthearted awareness to his specific condition. 

A large aspect of their YouTube channel and presence online is showing the world that interabled couples exist and how relationships can be successful with a caregiving aspect. They have before stated that the caregiving aspect to their relationship strengthens their emotional connection rather than putting a strain on it. Their candid and sincere videos have inspired and empowered many disabled people and they are figureheads in destigmatizing disability. 

Here, Shane and Hannah took the time to answer some questions for Cripple Magazine. We spoke about invasive questions they receive, dealing with a burden complex, and their own views on disability. 

For people who don’t know you, could you tell me a little about who you are and what you do?

We are Shane Burcaw and Hannah Aylward. We’ve been dating for over four years, and we’re engaged to be married! Together, we run the YouTube channel Squirmy and Grubs, which is a lifestyle vlog about our relationship. Our videos combine entertainment with advocacy; the overarching theme of our channel is normalizing disability and dating. Additionally, we address topics such as environmental inaccessibility, social stigma, and systemic injustice against people with disabilities.

Shane, could you tell me about your disability and how does it affect your lifestyle?

I live with spinal muscular atrophy type two and use a motorized wheelchair. I need help with most activities of daily living. Hannah is my primary caregiver, and that situation has been working really well for us.

As prominent figures in the online disability community, do you ever feel any pressure to represent us in a certain way?

Our representation of disability is at the forefront of our minds whenever we’re creating anything for public consumption. Speaking broadly, our goal is to show people that living with a disability is not the horrid, secluded, terrible existence that many people falsely believe it to be. When challenges arise, they’re often the result of some issue originating within our society or our flawed belief systems, rather than a problem within the disabled person themselves. In other words, we want people to be thinking of our social structures as the problems that need fixing, rather than the disability.

In a recent video of yours, you spoke about some of the more invasive questions you get asked in your YouTube comments. How do these comments affect you both and how do you deal with that?

Being full-time YouTubers, our privacy is very rarely private. That’s completely our own doing, and a necessary part of telling the authentic story of disability; however, the internet tends to go far beyond the boundaries of curiosity, and questions quickly become invasive. We get pretty upset sometimes, not because we feel personally hurt by the comments, but more because what they say about the people in our society.

So many people out there simply refuse to believe that an able-bodied woman could EVER be in love with a disabled man. The worst questions/comments that we receive are the ones that are attempting to prove our relationship is a lie, or unrealistic, or that Hannah must be severely “damaged” in some way to account for her desiring me. 

We deal with it by continuing to make videos! Ignorant people will always exist, but we believe our story is successful at moving the needle in the direction of knowledge and acceptance.

Shane, as many people are aware you co-founded Laughing At My Nightmare. Can you tell us a little bit about the non-profit and what you do? It has helped so many people! Could you ever have imagined how many people you would end up helping when you created it?

Thanks for the plug! Laughing At My Nightmare, Inc. is a 501(c)3 nonprofit that I’ve been running with my cousin, Sarah, for about nine years. Our mission is twofold: we provide free disability awareness seminars for thousands of students across the country each year, helping schools foster more inclusive and empathetic environments. Second, we support the disability community with grants and item donations. We’ve provided over $250,000 in adaptive and medical equipment in the last few years! We started LAMN while in college together, and we never dreamed it would grow to be what it is today. We’re consistently blown away by the generosity of our supporters around the world.

Since being a part of the online disability community, how have both of your own views about disability changed?

It seems like every week we are discovering new people with disabilities who are out there doing cool things. That’s not necessarily a changed view, but the ever-expanding community of disabled people getting their work out there fills us with happiness.

What’s the silliest thing you’ve ever read about yourself/your relationship online?

Shane’s ex-girlfriend’s name was Anna, which you might notice sounds similar to the name “Hannah.” This is going to sound like a joke, but we swear it’s not: people use THE SIMILARITY OF OUR NAMES to suggest that Shane was paying both of us to “date” him in pursuit of internet fame and glory. The leaps in logic there are extraordinary.

Recently you created the COVID-19 Resource Relief. Tell us a little more about that and why you started it!

Yes, this is a new program from LAMN that provides $100 Visa Gift Cards to people with disabilities who have been affected by COVID-19 and the related social distancing guidelines. Many of the implications of quarantine are more taxing for the disabled community, so we designed this program to help in a small way. We hope that our gift card recipients can use the gift cards to purchase essential items during this challenging time.

Shane, you have spoken before about how, like many disabled people, you have suffered from a “burden complex”. What’s some advice you would give to other disabled folks who also feel this way?

The hardest part for me was always ~believing~ other people when they told me, point blank, that my needs were not a burden to them. I assumed they were lying to me out of some moral obligation of kindness. I had to learn to trust people when they told me they didn’t mind helping me.

And finally…What is your life philosophy?!

Be kind to others and try to approach all things in life with an open mind, a sense of humor, and a desire to make the world a better place for other people.

 

A big thank you to Shane and Hannah for taking the time to work with Cripple Magazine! Please support their YouTube channel, their COVID19 Resource Relief and follow them both on Instagram. 

@shaneburcaw

@hannahayl

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