 |
| Shane and Hannah Burcaw, AKA Squirmy and Grubs, have spent the last four years chronicling their relationship and health journeys online. Shane has a degenerative disorder known as spinal muscular atrophy (SMA) while Hannah, as you probably guessed from the above photo, does not.
|
| After fielding countless questions, comments, and odd looks, the pair decided to use the power of the internet to tell their story. From honest chats about painful SMA treatments to debunking stereotypes, they spread awareness about what it’s like to live with and love someone with a disability. |
Last Thursday, they teamed up with biotech company Genentech to launch Double Take, a first-of-its-kind fashion show created by the SMA community. Our team got to drop into the show and snagged Hannah and Shane for a fireside runway chat. Check out our convo below.
|
| Q: |
First off: Where did the names Squirmy and Grubs come from? |
|
| Hannah: The names Squirmy and Grubs came from our nicknames for each other that we came up with very early on in our relationship. Shane calls me Squirmy because I allegedly squirm around in bed and keep him awake at night.
|
| Shane: Not allegedly. |
| H: It's alleged. And I call him Grubs because his hands are always a little bit sweaty and grubby. |
| Q: |
With an emphasis on community involvement and accessibility in fashion, Double Take is without a doubt the first fashion show of its kind. Can you tell us about your involvement in the show? |
|
| H: We've been involved with Genentech's SMA My Way program for about 3 years. Last year, we made a song with them. This year, it was the big fashion show. So we were really excited for this day. |
| S: In addition to walking the runway, we and the other members of the SMA My Way group got together for hours to talk about what the theme of this show would be, what was important, what the outfits will look like. It was a very collaborative effort with the SMA community.
|
| Q: |
What’s your big hope that viewers take away from the show? |
|
| S: I want people to realize that accessible clothing doesn't need to look medical. Just because something is accessible, it can still be stylish and professional and sexy. |
 |
|
| S: Every time Hannah and I are out in public, inevitably, a stranger will come up to us and say, “Oh, is this your mom?” “Is this your sister?” It's never, “Oh, is this your wife?” I think it really shows that people don't feel very highly of disabled people. People can't fathom that I'm married or a professional adult. So, we try our best to laugh about it and inform them, but it does get old. |
| Q: |
One of your YouTube videos is titled “The Happiness I Sacrifice for My Disabled Fiancé,” which is obviously attention grabbing. I know your answer is that you don’t sacrifice much at all! So we want to know: How has your partner *increased* your happiness and added value to your life? |
|
| H: We get a lot of comments on our YouTube channel from people assuming that I sacrifice a lot for Shane or that I have a worse life because I'm with Shane, and that could not be further from the truth. Shane and I have an amazing life together. Our relationship is a 50/50 split of work. I do more physical things. He does all of the annoying adulting, you know, administrative jobs. |
| S: I get all the bad tasks. |
| H: I know. I get off easy. But, yeah, we really do split everything 50/50. And I think both of us think that our relationship is perfect for us. |
| S: Absolutely. |
| Q: |
Last but not least, what advice would you give other couples who are in a similar position? Do you have tips for other folks in interabled relationships who find themselves receiving similar comments? |
|
| H: I think the advice that we would give other couples who are figuring this out would be to design your relationship how it best works for you. Don't worry about what society says you should be doing or what your partner should be doing. Just figure out what works best for you and go with that. |
| S: If we learned one thing in our time as YouTubers, it's that people have a lot of opinions, and they don't matter. All that matters is that you and your partner are happy. |
| |
