As many of you already know, my mother Emily, aside from being a best-selling author of beauty and health books, was an award-winning fashion designer. Indeed, she won the coveted Coty, as well as the Neiman Marcus, awards to name but a few. Furthermore, she was a founder and trustee of the renowned Fashion Institute of Technology here in New York City. Her designs have even been showcased in The Metropolitan Museum of Art’s Costume Institute. You might say that fashion is in my genes, although not necessary in my everyday outfits. In fact, my mother often declared, “God please tell me that’s not a hoodie you’re wearing!”
That said, I am still always on the lookout for any unique styles or even events that the fashion industry has to offer. And recently, both came to my attention in one extraordinary package.
First, a little background: One in four people in the U.S. lives with a disability. Yet disabled people often struggle to find functional, stylish clothing to express themselves as unique individuals. As a prelude to New York Fashion Week this September, a first-of-its-kind runway show called Double Take set out to increase disability visibility, break down stereotypes and champion adaptive fashion.
Double Take was created for the broader disability community by the Spinal Muscular Atrophy (SMA) community from beginning to end. People with SMA, a rare, progressive neuromuscular disease, walk or rolled down the runway wearing designs they collaboratively adapted with Open Style Lab, a nationally recognized nonprofit organization dedicated to creating functional yet stylish solutions for and with disabled people.
The goal of Double Take is to spark dialogue about disability representation in the fashion industry and underscore the importance of making fashion accessible for all. The program is sponsored by Genentech as part of the SMA My Way program, which was built to support and raise awareness for the SMA community.
Recently, I had the honor of interviewing one of Open Style Lab’s Fellows, Andrea Saieh, from her studio in Colombia, on this first-of-its-kind design collaboration:
JWM: Andrea, please tell us about the Double Take show.
AS: The Double Take show was about reminding people of the true power of fashion. Clothes exist as non-verbal tools of communication for us humans to show the world who we are, what we like, how we feel, and how we want others to see us. In the show, the participants and co-designers from the spinal muscular atrophy community showed the whole world what they were all about. Singer-songwriter James Ian walked the runway with a very rock and roll wolf-embroidered mauve blazer; poet Allegra Keys wore a very romantic sexy look with a front-laced, show stopping long scarlet dress with a front slit; digital artist Scott Menzel wore a street-style cape, showing his own artwork; actress Sawsan Zakaria wore a fearless and very fashionable aqua-teal catsuit that showed off her personality; influencer and author Shane Burcaw wore a very dapper burgundy velvet suit, and that is just to name a few.
JWM: That is extraordinary. How did you get involved with Open Style Lab, and in turn, this show, to begin with?
AS: I went to school at Parsons School of Design in New York, and back in 2017, when I first learned about Open Style Lab, they were working together, although both Parsons and OSL were focused on different inclusive-design projects. I was recommended to apply for an OSL Fellowship by the then Dean at Parsons, Burak Cakmak, because I had shown in my thesis project a great interest in innovation within fashion and ways in which fashion design has an impact on society. I ended up having to move back to my home country Colombia that year, so it wasn’t until this year that I applied for their Fellowship and got in.
JWM: Do you design for other labels?
SA: Yes, I have been working with my womenswear brand here in Colombia, which is great, and I love what I do. I design clothes to make women feel strong and powerful with designs that are inspired from modernity with a Japanese influence rather than parting from a masculine silhouette, which is what historically has been done. I have been doing this for the last four years, and since 2021 I had been trying to find ways of going back to innovation within fashion and how to make a greater impact or generate change within the industry. The Open Style Lab call for designers in May felt like a sign, and almost like a window opening up at the perfect time, so I applied and happily got in. Through this experience, Open Style Lab changed the way that I think as a designer. I am very grateful for what I learned from everyone I worked with, and I am excited to continue working on ways to make the fashion industry be more inclusive, as both a designer and a university professor.
JWM: What were some of the specific needs of the show’s participants – what sort of adaptations did you make?
SA: All six Open Style Lab Fellows were grouped in pairs, and we each got to work with four disabled participants. In my team, we worked with Shane, James, Allegra and Sawsan, and they all had very different personalities and physical needs. For James, for instance, we added a magnet where the blazer button usually goes, for him to be able to easily open it and close it; and since he felt identified with a rock and roll aesthetic, we embroidered a wolf on the back of his blazer jacket because this was something he felt represented him and his style. For Shane, we talked with him from the start about how comfort was extremely important to him. He mentioned not liking to dress up because he couldn’t find clothes that fit him right for his seated position. We came up with a very cool way for him to feel very comfortable while looking dressed up and sharp at the same time. We created a two-layered pair of pants that consisted of a base layer, which were made-to-measure, and leggings in a seated silhouette that were very comfortable for him to wear on his chair. On the top layer were the burgundy velvet pants that you see on the show’s video. Those were shaped to resemble a pair of chaps, and they snapped at the top so that no one would notice he was wearing anything under those. For Allegra, we co-designed the dress of her dreams, and we made it work for what she wanted aesthetically but also for what she needed functionally. The material was a very thin and very stretchy matte jersey that created a very elegant silhouette but was also a very comfortable garment for her to wear on her chair. It was stretchy enough so that we could remove the back zipper, which would’ve been harmful for her back. We embroidered one of her poems on the dress’s lacing to add a personal touch to the garment. Sawsan wore a catsuit that brought out her fearless personality, and we made changes based on what she wanted style-wise. She wanted to look sexy, and we made sure to create a cleavage that she would like, and we added a belt that resembled a corset because this was something she really felt identified with. With Shane and Allegra, who co-dress with the help of an aide, we also took into consideration details that would make the dressing process easy on both ends.
JWM: What an amazing undertaking. Tell us, what was the process of collaborating with these members of the SMA community like?
SA: It was very exciting because they all had very clear ideas of how they wanted to look in the show, and this made working together with them a very smooth process in terms of the creative development. Working virtually was a bit of a challenge because I had never had to take measurements or do a long-distance over-the-screen fitting, but it worked out in the end; and now I feel like anything can be done at a distance with clear communication and the help of others! The team-work component with them, the other Fellows and our mentors at Open Style Lab was an amazing experience because when you mix different knowledge, skills and experiences all in one room, innovation and growth really thrive.
JWM: Besides the design innovations, were there other insights you learned from this?
SA: I also learned a lot about SMA, and about all the misconceptions that people in the world have about people who have different abilities.
JWM: Such as?
SA: Well, for a start, I learned about how ableist society still is and that we need to talk more about how to make a more inclusive world for everyone to be able to take part in society and work for it. I learned a lot from each one of them, Sawsan, James, Allegra, and Shane and Hannah, and I hope that through this show, Double Take, others have too.
JWM: Did the resulting show and featured design adaptations meet your expectations for this Fellowship?
SA: I think the show that Genentech put together went above and beyond what I expected! I was so focused on the design work all the time that I didn’t realize how powerful the show was going to be until it actually happened. I remember being backstage and everything just got very emotional when they started playing James’s song. It just felt so powerful! It all came together then; I think for all of us. What is so great about the show is that we get to share this work we all did together with the whole world and change people’s minds about the stereotypes they have on the different-abled community, to change their minds on what the fashion industry is all about and also to inspire others to do more projects like this one, all around the world.
JWM: How did this experience impact you personally – how might it impact your design focus moving forward?
SA: This experience changed my life and the way I think as a designer. I want to continue being part of Open Style Lab at a distance, here in Colombia in doing research and extending my knowledge on inclusive design. I’ve also begun to do some research here in Colombia to develop inclusive design projects here. I’ve partnered up with someone who’s been working with image consulting for women who’ve had breast cancer, and together we want to work together on different inclusive design projects here in Colombia. I also teach fashion design at a university here, and I plan to teach my students how to be designers for every single person, not just a select group of people.
JWM: I think the design world has taken note of Double Take. What do you hope they might take away from this initiative?
SA: I hope people noticed just how fabulous everyone looked because adaptive fashion doesn’t just mean function, it means that people of all abilities have access to clothes that work for them so that they can communicate to the world who they are and what they’re all about.
JWM: Where can my readers and listeners go for more information?
SA: Open Style Lab’s website and Genentech’s SMA My Way program: Open Style Lab and SMA My Way
JWM: Any take away thoughts?
SA: I certainly hope that all designers are inspired! Not just students, but also people who’ve already been in the industry for a while, like me, and big companies who can make a great impact. It’s not that hard to add a line of work to what you’re already doing, and it’s a hundred percent worth it.JWM: Thanks so much to you and your team – as well as all the models – for creating and participating in this inspirational event. It truly is what being Better Than Before is all about.
