As part of its continuing efforts to support and engage with the spinal muscular atrophy (SMA) community, Genentech staged the first-ever fashion show for people with SMA in New York on Thursday. The event, Double Take, featured individuals wearing adaptive fashion designed to accommodate their body types and disabilities.
Michael Dunn, senior marketing director of neurological rare diseases at Genentech, noted that Double Take was created in collaboration with the SMA community.
“The importance for us is about partnering with the SMA community and ensuring that there’s disability visibility in fashion and in other industries,” he said.
The participants, all of whom have some form of SMA, were involved in the conception of the event and the clothing designs. They both walked and rolled down the runway.
That’s partly why the name Double Take has such resonance, Dunn explained.
“We want society to do a double take of individuals for the right reasons, not the wrong reasons,” he said. “We want them to do a double take for the style, fashion and self-expression that comes with different types of adaptive clothing, rather than a double take because the individual has a disability.”
Models, actresses, musicians, students and writers were among the show’s 11 participants. They included James Ian, a singer-songwriter who has collaborated with Genentech on past initiatives, as well as artist Scott Menzel and fashion entrepreneur Laura Watson. Shane and Hannah Burcaw, a husband-and-wife team who run a popular YouTube account chronicling Shane’s life with SMA, also made an appearance on the runway.
Sawsan Zakaria, a model and champion for disability rights, noted that most of the planning for the event took place on Zoom. After her appearance on Thursday, she described the show as “amazing.”
“I didn’t get to see everyone’s outfits until this morning,” Zakaria said. “Just being able to put faces to names and then see everyone was magical.”
Ian, whose song “Spaces” is meant to empower people living with disabilities, noted that art can help elevate disability visibility.
“Disability is a part of humanity and art often reflects humanity,” Ian said during a Q&A session after the fashion show. “So when disability is left out of music, film or TV, you’re essentially not talking about a part of humanity. Art, fashion and all those things help drive social change.”
Zakaria, for her part, hopes Double Take will spark awareness among the general population about challenges related to inaccessibility.
“It’s going to start with fashion, on today’s runway,” Zakaria said. “But it’s more than fashion – it’s stores, it’s the workforce… all of these things are still inaccessible to people with disabilities. Double Take will start the conversation.”
The fashion show is part of Genentech’s greater umbrella initiative SMA My Way, which aims to connect members of the SMA community.
“We want to inspire and educate able-bodied individuals as well as fashion designers and other [artists] that pharma may not typically be engaging with,” Dunn said. “It all goes back to how we view our role as making medicines: That’s only part of what we do, and the other part is engaging and giving better representation to those with disabilities.”
