Open Style Lab Highlights Disability Awareness and Fashion Inclusiveness at NYFW

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Courtesy of IMAXTree for Genentech

New York Fashion Week hasn’t always been at the forefront of inclusivity and accessibility, but a recent show featuring the spinal muscular atrophy (SMA) community is on a mission to change that.

On Thursday, September 8, Open Style Lab (OSL), a non-profit organization committed to making style accessible to everyone, regardless of cognitive and physical ability, hosted a one-of-a-kind fashion show, Double Take, in partnership with the SMA community. to “increase the visibility of disability, break stereotypes and champion adaptive fashion,” according to a statement from the OSL.

The show featured 15 members of the disability community – including YouTubers Shane and Hannah Burcaw, and singer-songwriter James Ian – who paraded in innovative pieces designed in partnership with the biotech company Genentech as part of their SMA My Way initiative, to meet the individual needs of each model.

SMA is a rare and progressive neuromuscular disease that affects nerve cells in the spinal cord, which can lead to muscle weakness that affects daily functions such as walking, breathing, and dressing.

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IMAXTree for Genentech

Actress and model Sawsan Zakaria, who wore a metallic blue look on the catwalk, took part in the event to empower people with SMA like her to express themselves through clothing. “When people first look at someone with a disability, they have these automatic assumptions about them,” she told the New York Times.

“It’s the first take, and the second, it’s us walking down the runway, looking stylish, fabulous in clothes that you can’t really say are adaptive, that’s what where we want to start. It’s a representation of the fact that people with disabilities can be stylish and show their personality through fashion.”

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According WWDthe organization’s adaptive fashion fellows, some of whom also have disabilities, worked with members of the SMA community on custom pieces, such as garments with hidden magnetic closures as an alternative to hard-to-fasten buttons and sleeves adapted for easier use in a wheelchair.

“I have collaborated with several people with SMA to co-create accessible clothing that matches both their personality and their individual needs, including Shane Burcaw, who has SMA and uses an electric wheelchair,” Andrea Saieh, a 2022 Open Style Lab Scholar told WWD on the design of the social media star’s Double Take set.


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Burcaw, who alongside his wife Hannah documents his journey with SMA to more than a million subscribers, opened up about his struggle with clothes as someone with the condition.

“For someone with SMA, who sits all the time, suit jackets can be hard to put on and frumpy, very unsexy,” he said. WWD, adding that her wedding day suit was “hard to put on” even though it was custom made. “Ultimately, Double Take is about celebrating differences, not trying to erase them. Fashion lets you do that, embrace the things that make you different,” he shared.

Robert M. Larson