Down Angle Symbol A symbol in the form of an angle pointing downwards. Shane and Hannah have been together for eight years. Shane is in a wheelchair because he suffers from spinal muscular atrophy (SMA). Courtesy of Studio Twelve:52
- Shane and Hannah Burcaw have been married for three years and together for eight years.
- Shane is in a wheelchair because he suffers from spinal muscular atrophy (SMA).
- They say they have a balanced relationship and an active sex life.
This essay 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 I starred in. I like to imagine 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.
Her email immediately stood out to me because it didn't even mention my disability. Other people told me I was an inspiration for existence, but Hannah saw beyond that. I had to get to know her.
At the time, I was living in Pennsylvania and Hannah was 1,000 miles away, in college in Minnesota. But I didn't have a cold. I emailed her and we FaceTimed the next day. It was immediately clear that we should be more than just friends. Two months later we saw each other in person and haven't looked back since.
Since then, we have documented our love story together on our YouTube channel Squirmy and Grubs. For most of history, disability has been portrayed in a very negative light. We wanted to change that, but we're tackling misconceptions about living with a disability.
Life with a disability is not terrible
Many people think that living with a disability is a fate worse than death. They feel sorry for me because I'm in this body, and therefore they feel sorry for Hannah because she's tied to me. And while I have challenges, I also have a pretty great life, which is typical in many ways.
This month we are performing in a musical called “Most Likely Not To…” in collaboration with SMA My Way. It is a variation of the “Most Likely” awards given to high school students. People with disabilities are the most likely to not get elected because people don't expect much from us. But in reality, we continue to lead successful and prosperous lives.
Yes, we are really in love
The most common question or comment we get is whether we are really in love. Yes, we are. We believe this is rooted in our society's very narrow idea of what it means to be male.
I am a grown man who weighs about 60 pounds. I use a wheelchair. If Hannah is in physical danger, I cannot save her. Our relationship is about much more.
Some of these reviews are truly hateful and malicious. People don't understand how I can attract a partner like Hannah without conforming to her alpha male stereotype. I want them to see the qualities that helped me attract Hannah, not what I don't have.
Our relationship is equal
Another misconception is that our relationship is unbalanced. Yes, Hannah does most of the upkeep of my life (although I'm better at helping with heavy boxes than you'd think).
The downside is that I do all the management tasks that Hannah hates. I send emails, call to dispute bills, and organize our taxes. The way we balance our relationship works perfectly for us. We are very balanced.
We are sexual
Like most other 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, just like most healthy men. For us, sex doesn't look like it does in every romantic film. But that doesn't make it any less valuable, satisfying or fulfilling.
Caring creates intimacy
A lot of people think that Hannah's life is about taking care of me 24/7. That's not the case. Caring is part of our everyday lives, for example when she helps me get dressed. These moments do not put a strain on our relationship. In fact, caregiving helped us build our communication and intimacy.
We were already in the public eye before YouTube
On one of our first dates, a woman came up to Hannah and I and started praying loudly for me. Another time, when I introduced Hannah as my friend, the person I was talking to simply burst into sobs.
At first, Hannah thought it was a one-time, strange incident. Now she knows that they are a given for the course. Our relationship looks 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 To…” will stream live on Shane and Hannah’s YouTube channel on February 29th at 6:00 pm EST.