I'm in a wheelchair, and my wife is able-bodied. We have a satisfying sex life, and our relationship is equal.
- Shane and Hannah Burcaw have been married three years and together for eight.
- Shane uses a wheelchair because he has spinal muscular atrophy (SMA).
This as-told-to essay is based on a conversation with Shane and Hannah Burcaw. It has been edited for length and clarity.
Our love story started eight years ago when Hannah emailed me after seeing a documentary I was in. I like to think she was overwhelmed by my charm, and that might be true: she said she just had an intense feeling that we would be friends.
For me, her email immediately stood out because it didn't even mention my disability. Other people were telling me I was an inspiration for just existing, but Hannah saw beyond that. I needed to know her.
At the time, I lived in Pennsylvania, and Hannah was 1,000 miles away, at college in Minnesota. But I had no chill. I emailed her back, and we FaceTimed the next day. It was clear right away that we were meant to be more than just friends. Two months later, we saw each other in person, and we haven't looked back since.
Since then, we've documented our interabled love story on our YouTube channel, Squirmy and Grubs. For most of history, disability has been shown in a very negative light. We wanted to change that by fighting misunderstanding about living with a disability.
Living with a disability isn't awful
Many people think living with a disability is a fate worse than death. They pity me for being in this body, and therefore, they pity Hannah for being tied to me. And yet, while I have challenges, I also have a pretty great life, that's typical in a lot of ways.
This month, we're appearing in a musical called "Most Likely Not To…," in partnership with SMA My Way. It's a spin on the "Most likely to" awards that high schoolers get. People with disabilities are never voted most likely to, because people don't expect much from us. But in reality we go on to live successful and thriving lives.
Yes, we're really in love
The most common question or comment we get is about whether we're genuinely in love. Yep, we are. We think this one is rooted in our society's very narrow idea of what it means to be masculine.
I'm a grown man who weighs about 60 pounds. I use a wheelchair. If Hannah is in physical danger, I can't save her. Our relationship is about much more than that.
Some of these criticisms are really hateful and vicious. People don't understand how I can attract a partner like Hannah without fitting their alpha male stereotype. I would like them to see the qualities that helped me attract Hannah instead of what I don't have.
Our relationship is equal
Another misunderstanding is that our relationship is unbalanced. Yes, Hannah does most of the physical upkeep of my life (although I can help move heavy boxes better than you'd think).
The flip side is that I handle all the managerial tasks that Hannah hates. I send emails, call to dispute bills, and organize our taxes. The way we have our relationship balanced works perfectly for us. We're very evenly matched.
We're sexual
Like most other married couples, we have a sex life. That's shocking to some people, who think people with disabilities don't have physical desires. I'm sexual just like most able-bodied men. Sex for us doesn't look the way it does in every romance film. But that doesn't make it any less worthy, satisfying, or fulfilling.
Caregiving builds intimacy
A lot of people think Hannah's life revolves around caring for me 24/7. That's not the case. Caregiving is built into our days, like when she helps me get dressed. Those moments aren't a drain on our relationship. In fact, caregiving has helped us build our communication and intimacy.
We were in the public eye even before YouTube
On one of our first dates, a woman came up to Hannah and me and started loudly praying over me. Another time, when I introduced Hannah as my girlfriend, the person I was talking to just burst into sobs.
At first, Hannah thought these were one-off odd incidents. Now, she knows that they're par for the course. Our relationship looks different to what people are used to, so people feel entitled to comment on it. At least in our media spaces, we can control the narrative and change the way that people see couples like us.
"Most Likely Not To…" will livestream on Feb. 29 at 6 p.m. EST on Shane and Hannah's YouTube channel.