DOUBLE TAKE RUNWAY SHOW SERVED AS AN EXPRESSION OF THE SPINAL MUSCULAR ATROPHY AND ADAPTIVE FASHION COMMUNITIES

by John Russel Jones

Double Take, a runway show that aimed to increase disability visibility, break down stereotypes, and champion adaptive fashion, gave New York Fashion Week an unofficial start last week, hosted by biotechnology company Genentech and the Open Style Lab, at Manhattan’s Rockefeller Center. The show’s models were all affected to varying degrees by spinal muscular atrophy (SMA), a progressive neuromuscular disease that can impair walking, dexterity, and overall strength, and which also renders clothing with certain fasteners, cuts, fits, weights, and silhouettes inaccessible.

ABOVE and all photos by IMAXTree for Genentech

Shane and Hannah Burcaw

Before the show, I had the pleasure of interviewing Shane Burcaw, half of the YouTube celebrity duo Squirmy and Grubs. Shane and his wife Hannah — who just hit 1M subscribers — have a channel that is a frank look at the couple’s interabled love life. Burcaw pointed out that even plans he had for his wedding suit went awry.

“Suits for me, generally, are impossible. I have a very limited range of motion in my arms, and I’m really small. I’m 30 years old, and I weigh 65 pounds. I’ve never really been able to express myself in a stylish way. I usually end up having to shop in the kid’s section where the suits have zippers and, even if I can find one that fits, are impossible for me to get my arms through the sleeves. Pants are, inevitably, too long. I wanted to wear a suit for my wedding [the two have been married for just over three years] and I knew it was going to be a shit show. So we found a child’s suit from a shop in London and ordered it online. It didn’t fit, so we took it to a tailor who attempted to make some alterations. It worked for maybe an hour, long enough to take the wedding photos, and then I had to take it off. My wife and I are privileged in that we can order something from London and pay for a tailor. You shouldn’t have to come from a place of privilege in order to wear clothes that fit and make you feel good.”

Singer-songwriter James Ian, lead voice of the acclaimed SPACES

The apparel that was created for the participants in the Double Take show was designed by Open Style Labfellows Kyle Brogan, Catherine Burkey, Jenna Dewar, Kiley Gallant, Rosemary Loh, and Andrea Saieh. The custom creations ranged from suits to evening gowns to dramatic custom-printed capes.

Actress and model Sawsan Zakaria

We talked to Adam Pryor, from the corporate relations department at Genentech, after the show about why the Roche Group subsidiary is getting into the fashion space, and how these designs might be shared with a wider audience to make them more accessible.

“Obviously, we’re a medicine maker, but we implement programs as a way to go beyond medicine and serve the communities that those medicines support. This program is for SMA, and in consulting with the members of the community, we asked them what they would want from their pharmaceutical company. How can we service the community? Themes about disability representation and self-expression kept coming up. ‘Double Take’ comes from them wanting people to do a double take, not because of how they look, physically, but how they express themselves. There is a gap in terms of their ability to express themselves in fashion because there’s not much for them. Clothes don’t fit their bodies. They’re difficult to put on and difficult to wear. So we decided to do a fashion show. It’s a little unorthodox, but the community has rallied behind it and led it themselves.

Our goal is to utilize the patterns and clothing for educational purposes. We’re currently looking into how that can be done. And hope that in the way that we shared the modifications that were made and outlined them, that the industry can figure out a way to make these work…as much for someone with a disability as for those who are able-bodied.”

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