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- Shane and Hannah Burcaw have been married three years and together eight.
- Shane uses a wheelchair because he has spinal muscular atrophy (SMA).
- They have a balanced relationship and an active sex life, they say.
This essay as they said it is based on a conversation with Shane and Hannah Burcaw. It has been edited for length and clarity.
Our love story began eight years ago when Hannah emailed me after watching a documentary in which she appeared. I like to think that she was overwhelmed by my charm, and that might be true: she said she just had an intense feeling that we would be friends.
To me, his email immediately stood out because it didn’t even mention my disability. Other people told me I was an inspiration for simply existing, but Hannah saw beyond that. I needed to meet her.
At the time, I was living in Pennsylvania and Hannah was 1,000 miles away, in college in Minnesota. But I didn’t get chills. I emailed him and we FaceTimed the next day. It was immediately clear that we were meant to be more than just friends. Two months later, we saw each other in person and haven’t looked back since.
Since then, we’ve documented our intertwined 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, but combat misunderstandings about living with a disability.
Living with a disability is not horrible
Many people think that 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 good life, that’s typical in many ways.
This month we will appear in a musical called “Most likely not…“, in partnership with SMA My Way. It’s a variation on the “Most Likely” awards that high school students get. People with disabilities are never voted Most Likely, because people don’t expect much from us. But in reality We will live successful and prosperous lives.
Yes, we are really in love.
The most common question or comment we receive is about whether we are genuinely in love. Yes we are. We believe this is rooted in our society’s very narrow idea of what it means to be masculine.
I am 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 much more than that.
Some of this criticism is really hateful and cruel. People don’t understand how I can attract a partner like Hannah without fitting the alpha male stereotype of her. I’d like them to see the qualities that helped me attract Hannah instead of the ones I don’t have.
Our relationship is the same
Another misunderstanding is that our relationship is unbalanced. Yes, Hannah does most of the physical maintenance in my life (although I can help move heavy boxes better than you might think).
The other side of the coin is that I take care of all the administrative tasks that Hannah hates. I send emails, call to dispute invoices, and organize our taxes. The way we balance our relationship works perfectly for us. We are very even.
we are sexual
Like most married couples, we have a sex life. This is shocking to some people, who think that people with disabilities have no physical desires. I am sexual like most healthy men. For us, sex is not seen like in all romantic movies. But that doesn’t make it any less valuable, fulfilling, or fulfilling.
Care generates intimacy
Many people think Hannah’s life revolves around taking care of me 24/7. That is not the case. Caring is built into our days, like when she helps me get dressed. Those moments are not a burden on our relationship. In fact, caregiving has helped us develop our communication and intimacy.
We were in the public eye even before YouTube.
On one of our first dates, a woman approached Hannah and me and began praying out loud for me. Another time, when I introduced Hannah as my girlfriend, the person she was talking to burst into sobs.
At first, Hannah thought these were strange, one-off incidents. She now she knows they are par for the course. Our relationship is different than 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 people view couples like us.
“Most likely not…” live broadcast on February 29 at 6 pm EST on Shane and Hannah’s YouTube channel.