Improving the Function and Usability of Clothing for People with Disabilities

Clothing is both functional and a means of self-expression, according to Open Style Lab, a nonprofit that works with designers, engineers, and occupational therapists to create clothing that addresses the needs of people with disabilities. In September 2022, as part of Genentech’s SMA My Way initiative, Open Style Lab and the SMA community joined forces for New York’s Fashion Week to feature the Double-Take fashion show in the hopes of increasing the visibility of people with disability and championing adaptive fashion. We spoke to Yasmin Keats, executive director of Open Style Lab, about her organization’s efforts to promote the design of adaptive fashion, the impact it can have on work and other opportunities for people living with disabilities, and how it is helping to change the fashion industry.

Daniel Levine: Yasmin, thanks for joining us.

Yasmin Keats: Thank you very much for having me here, Danny.

Daniel Levine: We’re going to talk about fashion, Open Style Labs, and efforts to improve the functionality and usability of clothing for people with disabilities. Perhaps we can begin with a little background on Open Style Labs. For people not familiar with the nonprofit, what is it?

Yasmin Keats: Of course. Open Style Labs is a 501c nonprofit, which was started as a public service project in 2014 out of MIT. And it was really started to bring to these engineers, occupational therapists, designers, and look at the boundaries of how we can think about not any functional clothing when it comes to people with disabilities, but also stylish clothing.

Daniel Levine: And how did it come about?

Yasmin Keats: It came out of a public service project, very much sped out of the 2014 Boston bombing where many people were left with amputated limbs.

Daniel Levine: This is obviously a problem that extends much further than people who suffered the loss of limbs in that attack, but did the need become more apparent as the work began?

Yasmin Keats: Definitely. I mean, we’ve been running now for nearly 10 years, and each year we really focus on maybe a different cohort, spinal cord injury one year, spinal muscular dystrophy, and across many different disabilities, there are different challenges when it comes to clothing. I mean, just think about if you have trouble with dexterity, with your hands doing up buttons or zippers or anything fiddly. If you are wheelchair bound, many times you need different clothing for when you are seated 24 hours a day. You know, pressure sores can come from seams in the wrong place or buttons in the wrong place. So, over the years as we’ve expanded to different groups of people and different types of disability we’ve learned so much and also seen where lots of designs and innovations can cross over.

Daniel Levine: There’s been a lot of talk about diversity, equity, and inclusion, but how seriously does the fashion industry take this with regard to clothing design?

Yasmin Keats: I think they are starting to become more aware of it. I think everyone is behind education. I feel like ergonomic design, when it comes to furniture or technology, they’ve been doing a lot to do with assistive technology for a while. So, those types of industries are more adapted to it. But fashion, even in the education, and this is why Open Style Labs focuses on education, I feel a lot of the education in the fashion world has been very much designing the clothing and then the fit onto the body after. So, the methodology of how it’s been educated even before people become designers haven’t really looked at diversity and inclusion. So, diverse and inclusion amazingly people are becoming more aware of it now. But it’s going to take a while, I think, till it really seeps into the way that people design and the way that people design with disabilities not for them.

Daniel Levine: If you think about the world of rare diseases, fashion would probably not be at the top of the list of the types of challenges that people face in their everyday lives. Can you give some sense though of what challenges fashion presents to people who do have disabilities?

Yasmin Keats: Oh, definitely. For example, if we’re talking about rare diseases, we we’re just approached by a family that has something called EB [epidermolysis bullosa] and that’s where the skin, by any types of scenes or slight rubbing of the skin can be caused blisters. So, clothing is the closest barrier to the skin that we have. And then, we’re called Open Style Lab, not Fashion Lab, because fashion comes and goes, and style is more of a way of self-expression. And being able to really emulate who you are through the clothing that you wear, which like shelter and food, is something that we all have to do and when it comes to a different meaning from, let’s say, ALS that can affect the way that you are able, up to how you can speak. And we ran a really amazing kind of workshop the other month where one of the participants said, when you start to lose your voice, your only way of self-expression and showing yourself to the world is what you wear. So, almost because of stigma, a lot of the times clothing and the ability to show your style becomes even more [important].

Daniel Levine: It interesting to hear you talk about this as an issue of self-expression. I’m a black t-shirt and sweatpants kind of guy, and there’s a reason I do an audio podcast. But that aside, clothing can be an important means of self-expression and it can make people feel good about themselves. It could play a role in their participation in the workplace. How do these issues fit into what Open Style Lab is seeking to do?

Yasmin Keats: Very much. A lot of our work is also running workshops and doing research with the community. And one of the biggest asks that we get from people is around professional wear and formal wear and how a lot of the time not being able to find the right clothing in specifically a professional environment, they feel like they’re not able to show up or it affects the way that they will be viewed on that first initial way that they’re presenting themselves in a meeting or in a work environment. I mean, just think about it when you go on a date or even when you’re doing an interview in person, you think about what you’re going to wear. We all do, and I think maybe a lot of people feel because of disability and a stigma around it, a lot of the people that I’ve talked to have said they feel they have to care more. That doesn’t go across all the board, but just the power that style has, all of clothing has, on those first moments not only on the way that they may view you, but on how you will feel in terms of confidence and wellbeing.

Daniel Levine: Is there a case to be made to designers and clothing manufacturers about why this is a good business decision to take this seriously?

Yasmin Keats: Definitely. I mean the disability community is like 15 percent of the population, and it’s only going to be growing as we’re getting older and we’re living longer. Disability is the one minority that we will or can be part of at some point in our lives, whether it’s through aging or some kind of accident or disease as we’re living longer. A lot of the challenges that we see with clothing affects elderly dexterity, trouble with even things like incontinence and having the right gear that can allow you to live a more active and wellbeing lifestyle.

Daniel Levine: There are two things Open Style does that I wanted to talk to you about. The first is it’s incubator program. Can you explain what this is and how it works?

Yasmin Keats: Yeah, of course. We run an eight to 10 week program in the summer where we get occupational therapists, fashion designers, or designers in general. So, we’ve also had industrial designers, product designers, engineers, and people with disabilities together in a group to co-design together functional and stylish clothing. So, throughout this 10 week program, they will create a garment that fits specifically to that person’s needs. Last year we partnered with Genentech as part of an SMA My Way program and there we did more adapting of existing clothing, but it’s all around designing with the community. And it’s a mixture of physical testing and also education around inclusive design processes and the history of disabilities, different skills and explorations and innovations through this 10 week program.

Daniel Levine: How long has the program been around and what’s been its impact?

Yasmin Keats: It’s been around since 2014, so we’re in our ninth year. The impact of the program, actually, we started to see quite recently. When it comes to, first of all, [when] Open Style Labs started, there wasn’t much exposure around adaptive fashion in 2014. And Open Style Labs really started to show what was possible. And what’s been amazing to see is, in the last nine years, the amount of innovation that have come out of many different people in this area build. And what we’ve been seeing specifically in the last two years is a lot of brands coming to us to wanting to bring inclusion into their workplace. And a lot of that has also come through ex-alumni who are now in the fashion industry and making change from within. And that is why we exist, to see that kind of cycle.

Daniel Levine: The other thing that Open Style does is provide services. This includes things like training, community engagement, research, and product development and testing. Can you explain how you work with the industry in this area?

Yasmin Keats: Yeah, of course. It really depends. I mean, we’ll really tailor our work to where the organization is at. First of all, we, we don’t want to work with anyone that won’t go through our whole process and bring in the people with disabilities throughout the whole process. So one thing that we do is we often do a mission within the organization as a startup—so, a lot of internal education about disability, about inclusive design processes. And then depending on where they’re at, whether it’s the beginning of a project, the middle, we’ll bring in people with disabilities to help test products to give feedback to help within how they want it to be marketed. And we’ll really help bridge that kind of gap between the disability community and the organizations or brands. I think what makes Open Style Labs unique is that we are a group of designers, so we are also able to understand design language and bridge those knowledge gaps as well.

Daniel Levine: This goes beyond just clothing. I know you ran a hackathon recently with Ikea. What was the purpose of that and what was the outcome?

Yasmin Keats: So, it was a three day event at Chelsea Market and we brought existing Ikea products, and we also opened it up to the general public to give feedback on the products and to kind of do a hacking day together. And it was to create co-ideation opportunities, bringing the community to design together with Ikea’s team and on Ikea’s products what could be different types of solutions and hacks, which has now seeped into some of the existing Ikea products down the line. Another part of it was we wanted it to be in a public space, because disability is often hidden or the work behind it is hidden, and we wanted it to be in a public space so that people throughout this weekend could also participate as a general public. A lot of people, most people will have a loved one or have experience with disability themselves and so it was this way of engaging the community and the wider public around what kinds of solutions can be made on these everyday products.

Daniel Levine: Open Style recently got a fair bit of attention through a show during Fashion Week in New York, which was even featured in Vogue. This was a collaboration with Genentech and the spinal muscular atrophy community called DoubleTake and featured people with SMA modeling adaptive clothing made by Open Style Labs. What was the idea behind the event?

Yasmin Keats: So, the idea behind the event was to really showcase. Within the event we also had many of the people with disabilities who had taken part explain the process behind it. And the idea was also [that] it was the first, I think, disability center runway show within New York Week, New York Fashion Week calendar. So that was also really important that it was starting to have a stage kind of equal in the calendar of New York Fashion Week and started to be taken on the same level. So that was important for us, but it wasn’t like a separate thing. It was also a real way of exposing the work that we do and this community as an empowering, incredible community and these amazing designs that came out of it, which really looked at function and style and how they came together.

Daniel Levine: Well, walk us through that. What were some of the things the clothing designs did to address the needs of people with a degenerative neuromuscular condition?

Yasmin Keats: So, one of them, for example, was for a gentleman called Shane, and he wanted to wear [Daniel: This is Shane Burk?] and the outfit that was chosen for him was a velvet purple suit. And Shane expressed that he often wore jeggings because they’re comfortable and you can sit in them for a long time, and there’s no excess fabric that gets creased in certain areas or buttons or zippers or seams that you’re sitting on for hours. And the team 1 created his own customized jeggings that could be underneath the suit. And then they realized, he’s not going to be standing, so why do we need fabric in the back? So, they just made these kind of clip on leg areas of the suit that could go on. So, it looked seamless, it looked perfectly made like a regular velvet suit, but there were all these small details, like even the arms, because a lot of the fabrics can get punched in in arms that are locked in certain positions. So, they took a lot of that excess fabric out and put an elastic material, and the back was cut all the way down the back, so you put it on like sleeves and then kind of belted it together from the back. And that idea actually came from Shane himself, who had had something similar done for him in a previous suit. So, that’s why it’s so important to make it with the community. They live with this. Every single one of the hacks and solutions will also come from day-to-day things that they’ve done in their lives.

Daniel Levine: What’s been the response to the show?

Yasmin Keats: I think the response has been amazing. We got a lot of great press from it. And people are starting to be more interested in this area who maybe wouldn’t have been interested before, especially seeing people like yourself; where the medical community or people that maybe don’t talk about fashion are looking at how clothing and style and fashion can play in these two worlds.

Daniel Levine: As you think about furthering the mission of Open Style Lab, where do you see the greatest opportunity?

Yasmin Keats: For us, I think it’s how much we can expand education, our educational program with different universities, with different students, or even occupational therapists. A lot of them come to us and want to hack and design with the community. And then also with brands. I think it’s all about education, educating brands on how to design inclusively. You know, our aim is to go in, teach them how to do the process, help them through that process, and to make ourselves dispensable so that they can continue to do the work themselves. But really, looking at how fashion is being taught nowadays and how we can build inclusion into the curriculum and teach this co-creation process. Cause once you see it, you can’t really unsee it. And that’s what we’ve seen with a lot of our alumni.

Daniel Levine: It’s been almost 10 years since the lab started. Have you seen the industry change during that time to be more inclusive of people with disabilities?

Yasmin Keats: Definitely, and I think a lot of it has come from a lot more awareness within the DEI community in general, and sustainability, and really having to rethink the fashion industry as having a reckoning at the moment, working harder to be more sustainable, and how to rethink how they bring inclusion in more. Disability, unfortunately, I feel has been the one that has been kind of forgotten about, but in the last few years has started to make a lot more of an appearance and I hope it only continues to grow.

Daniel Levine: Yasmin Keats, executive director of Open Style Lab. Yasmin, thanks so much for your time today.

Yasmin Keats: Thank you.

This transcript has been edited for clarity and readability.

This article was updated to reflect the correct timeframe of the Double Take show.