To spotlight the need for adaptive fashion design, the spinal muscular atrophy community has teamed with nonprofit organization Open Style Lab to develop a runway show called Double Take. The show will take place Sept. 8 at 10 a.m. at 608 Fifth Avenue in New York.
SMA is a progressive neuromuscular disease that can impair walking, dexterity and overall strength, which makes clothing with certain fasteners, cuts, fits and weights inaccessible.
Double Take is the first fashion show with start-to-finish SMA community involvement, from conceptualizing the message to collaborating on clothing designs, to walking and rolling the runway leading up to New York Fashion Week, and is dedicated to everyone living with a disability.
The show looks to enable people with disabilities to occupy a space that’s often shut off to them, and the SMA community is inviting the world to do a “double-take,” not because of their disabilities but because of their style and individuality.
Prior to the show, Open Style Lab adaptive fashion design fellows, some of whom have disabilities themselves, worked with SMA community members to create and modify garments, according to each runway participant’s personal style and needs. The garments feature hidden magnetic closures to create the look of buttons without the challenge of fastening them. There are also stretch knit panels instead of zippers, flexible sleeves for easier wheelchair operation, and other adaptations.
Support for Double Take was provided by biotechnology company Genentech’s SMA My Way program, which is an initiative that aims to support people impacted by SMA by sharing their experiences and building connections within the community. Genentech, which discovers, develops, manufactures and commercializes medicines to treat patients with serious and life-threatening medical conditions, is a member of the Roche Group, headquartered in South San Francisco, California.
“Thanks to the support of Genentech, Double Take gave me the opportunity to explore forward-thinking fashion designs that are inclusive of people of all abilities. I collaborated with several people living with spinal muscular atrophy to co-create accessible garments that fit both their personalities and their individual needs, including Shane Burcaw, who has SMA and uses a power wheelchair. To adapt a purple velvet suit for Shane, I added an invisible zipper down the back of the jacket, for easier dressing, and stretch panels at the elbows to accommodate bending. Matching custom-made velvet pants had two layers — a comfortable L-shaped base and an interchangeable cover that goes on top,” said Andrea Saieh, Open Style Lab 2022 Fellow for Double Take.
“For a person with spinal muscular atrophy, who is sitting all the time, suit jackets can be difficult to put on and frumpy, very unsexy. We ended up getting a suit custom-tailored for our wedding, and it looked amazing, but it was still tough to get on. For the Double Take project, which was sponsored by Genentech, we worked with adaptive fashion designers to create a suit that not only looked great but was also comfortable and much easier to wear. Ultimately, Double Take is about celebrating differences, not trying to erase them. Fashion allows you to do that — to embrace the things that make you different,” said Shane Burcaw, who will model on the runway, with his wife, Hannah.