Sam’s Journey

Week 1: First day in person:
The first Saturday session was exciting, exhausting, and overwhelming. Walking into Newlab that first time was like walking into a playground for adults. There was so much to see, so much new information to absorb, and so many new people to meet. Excited not just for the program, but to have the opportunity to return to Brooklyn for the first time in years, I feel immensely grateful. Here goes nothin’!

A reflection on culture, belonging, and the summer program so far:
Ever since I was a kid, I remember wishing and wanting to wear high tops of varying styles. Famous musicians who I admired like Joey Ramone, who wore Converse All Stars or “Chucks”, to famous athletes like Michael Jordan, who literally built his own sneaker and sportswear brand, wore high tops. I remember the disappointment I felt when I tried on Chucks for the first time with my AFO, which had a literal mechanical hinge at the ankle, only to realize that although I could make it work, the hinge would eventually wear through the thin, canvas sides of the right shoe. That’s when I realized high tops just wouldn’t work for me. It wasn’t worth having my parents spend the money on a pair of shoes that would quickly get worn out.

As I’ve gotten older, Jordans have become increasingly appealing. Although I’ve never been interested in sports, Jordans became so commonplace among my peers that I became familiar with the aesthetic, which I liked in part because of its sleek lines and contrasting colors. They also seemed to be built more durably than Converse. Unfortunately, while the flexible canvas of Chucks makes those easier for me to put on and take off, the thicker more structured nature of Jordans, while making the sneakers more durable, also makes them harder for me to put on and take off.

The Jordan 1s are symbolic and important because of their cultural significance. They are a shoe I remember wanting to be able to wear since I was a kid. Whether you were into sports or creative endeavors, the Jordan 1s were appealing and the epitome of cool shoes. I guess in that way, they mean fitting in; being included and belonging, which is something I never felt like I did. The high top Nike Flyease make me feel included, but the fact that they’ve become scarce except for resellers hoping to make quick, “easy” money by raising the price above retail value, and that it’s unclear whether Nike will produce more, makes me feel excluded once again. In my research, I’ve even heard of some so-called “sneakerheads”, with no experience or understanding of the supposed target audience of the Flyease, critique its design and claim it dilutes the Jordan brand. This is how style can both remove and add to the stigma of disability. The fact that Nike failed to market the high top Flyease Jordan 1s to disabled people or even include us in their marketing stories only exacerbates the stigma being disabled already comes with. While Nike and the shoes were hailed as innovative technically, to be innovative socially and culturally, Nike needs to not only continue manufacturing this shoe, but to highlight and celebrate the disability community in its marketing. To not do this, and to foster an environment that makes it harder for the people who actually need the shoes to get them, they are just as guilty of othering us and capitalizing off of “inspiration porn” as any other corporation.

Participating in the summer program has been a fantastic opportunity so far. I feel intellectually and creatively stimulated and challenged. I feel empowered and encouraged to practice my self-advocacy skills, learn new assistive technologies, own and communicate my challenges and limitations. I feel heard and seen. I haven’t always had a positive relationship, or even acknowledged, my identity as a disabled person, but OSL is helping me integrate that aspect of myself into the whole of me. For example, I have always been a slow reader. For years, I simply didn’t read. Earlier this year, I decided to challenge myself to read more, and to embrace audiobooks as my method for accomplishing that goal. During the first week of the program, I felt daunted and overwhelmed by the suggested readings, but I wanted to read at least some of them. My teammate, Christine, suggested the text-to-speech app Speechify, which has been powerful. Now that I’ve used it for nearly 2 weeks, I’ve been using it to help me outside of OSL, too.

Two key insights
Team Sam had a productive week and learned two key insights that will shape the further development of our shoe.

We met in Manhattan on Sunday, June 23rd to go shoe shopping. After recently acquiring a pair of Nike Air Jordan 1 Hi FlyEase that fits me with my AFO, I decided to wear them both together for the first time on this adventure. With cautious excitement, I stepped out of my apartment and headed for the elevator. As I made my way to the bus stop, I felt an unfamiliar sense of stability underneath me, and as I continued walking, I noticed that taking steps with my right foot felt easier and faster. It felt like the brace or the shoes, or both were giving me momentum. I forgot that this is what it was like to wear the brace! This pep in my step spurred a sense of confidence.

Our first stop was Eneslow Shoes & Orthotics on the Upper East Side. This is where the first key insight was gained. A very friendly and helpful pedorthist, Pedro, took very good care of us. Since the beginning of the project, we’ve been wondering whether the curve, or helix, of my AFO is essential for its function. It would be a lot easier to develop a shoe to accommodate a brace that went up the back of my leg rather than one that wraps around and up the side of it. Pedro informed us that, yes, the helix is essential, as it helps keep my foot pointed straight rather than turning in.

Next, we headed to Fleet Feet, where my feet were scanned with a machine that can measure a number of factors including heel-to-toe length, ball width, arch height, and even pressure distribution.

Our last stop was Foot Locker. I tried on hi-tops like Converse All Stars and non-FlyEase Nike Air Jordan 1s to get a better sense of what elements of these nonadaptive shoes do and don’t work for me.

The following Friday, Christine and Sophia came to visit me at my apartment in the Bronx for a coworking session. Observing me in my home life allowed them to see in a more natural environment than they had previously. I introduced them to my two cats, we filmed some of an interview we will be putting in a video documenting our project, and I took them to my favorite local deli, Liebman’s, which I’ve been eating since I was a kid.

Back at my apartment after lunch, we discovered our second key insight of the week. One of the Jordan FlyEase’s accessibility features is a zipper that allows the back of the shoe to open. While modeling the donning and doffing experience for Sophia and Christine, I put the shoe and my brace on once with the back of the shoe open and a second time while the back of the shoe was closed. We discovered that putting the brace and shoe on with the back closed is significantly easier than putting them on with the back open. The discovery that using one of the hi-top’s accessibility features makes the shoe less accessible to me was fascinating and unexpected.

I’m grateful to have had the opportunity to let my teammates a little deeper into my world. It brought us closer as a team and helped them understand where and how I spend a lot of my time. It allowed me to show them a side of my personality they hadn’t seen before.

A reflection on disability, identity, and ownership

I have a confession to make: I’ve been avoiding writing this. Even though I have a lot of thoughts and (strong) feelings about disability and identity, and even though I’ve already shared bits and pieces of my perspective on this with the OSL cohort, it can be very overwhelming to reflect and elaborate on these topics.

I haven’t always owned my disability. Growing up, I was always told that I “can do anything”. I was conditioned to be “normal”, which in hindsight feels like a lot of pretending. I downplayed my very real limitations, which my parents unintentionally modeled for me, to such a degree that the mainstream summer camp I went to for six summers put me in two near death situations by not providing me adequate supports. I resisted assistive technology and shied away from other people with disabilities.

Age and experience are continually transforming me. Technology gave me the confidence and security to begin embracing my disability. On some level, it gave me a lens to incorporate disability into the rest of my identity, and a purpose to use my experiences to help others. I’ve been working with the same therapist since about 2017, when I was in my mid-20s. He periodically reminds me that I used to refer to my “so-called” disability. That feels like such a distant time now. The longer I work in accessibility, the more ownership of and pride I take in my disability. Throughout my life, I’ve often felt, and sometimes still feel, misunderstood and like I don’t fit in. Like I’m not disabled enough to belong in the disabled community and not able enough to belong in nondisabled society. As hard as that is sometimes, I’m learning to accept that it’s ok. I’m learning that the things that make me different are the very things that give me strength and value. Not everyone is going to recognize and appreciate that and that’s their loss. Not everyone is going to like me and I can’t make anyone like me.

One of the challenges I face because of my disability is that some people, despite my physical appearance, don’t visually recognize that I have a disability. The treatment I’ve received from some of these people contributes to insecurity and imposter syndrome that I’m constantly working through to this day. My AFO, or leg brace, provides me a sense of security when I’m out and about in the world. Beyond the physical safety and stability it affords me, it sends a nonverbal cue to any person around me that “hey, this guy is different. He has something going on.” This, in turn, gives me a greater sense of comfort and confidence when asking someone to give me their seat on crowded public transit or even asking for directional assistance in a busy airport or on a busy sidewalk.

At some point before the pandemic, I stopped wearing my AFO. I became frustrated with it after buying a pair of sneakers that fit fine without it, but were extremely difficult to put on with it. So I rejected it. If I recall correctly, I had already been frustrated with putting it on with other shoes I owned that it did fit with, but for some reason, trying to wear it with this particular pair of sneakers pushed me over the edge. I stopped wearing it entirely. I didn’t even think of AFO-compatible shoes, but knowing me, I would have rejected them too. I don’t remember ever wearing shoes that were specifically designed to be AFO-compatible when I wore an AFO as a kid and I’m not even sure they existed. Most of the accessible shoes I’ve become aware of more recently are ugly or unappealing in some other way or ways. I never actively made this choice as a young adult, but I’d rather wear shoes that I like without my leg brace, than wear the leg brace with a select few pairs of shoes that it might fit inside of and be easy to put on. But ultimately, choosing to wear my AFO with stylish sneakers that I like and want to wear boosts my confidence, in part by empowering me to embrace my identity and experiences as a disabled person and by putting my disability on display.

Nearing the end and Prototype Reaction

I can’t believe we’re already nearing the end of the summer program. As much as I’m relieved to get my Saturdays back, I’m sad not to have the excuse to see the other fellows and my teammates. Now that I’ve participated in two Open Style Lab programs, OSL feels a bit like family. I’ve spoken to some more than others and I see some more than others, but everyone I’ve spoken to has been super friendly and easy to talk to.

This week, Team Sam’s prototype came together in big ways! My mind was blown when I first saw a photo of it, and seeing it in person took it to a whole other level. Sophia and Christine have been absolutely killing it.

Final Reflections from Team Sam

OSL’s summer program has been a deeply powerful and impactful experience. I won’t go into detail, but the past 16 months have been difficult for me. My confidence and self-worth were very nearly depleted at the start of the summer, but working with Sophia, Christine, the rest of the cohort, and OSL’s leadership team has been a brilliant reminder that my voice matters and people do care about what I have to say. The OSL community has played an essential part in reinvigorating my soul and lifting my spirits.

To wrap up this project, I’m delighted to share this platform with the two people I’ve worked most closely with these past six weeks: my teammates Christine Oak and Sophia Luu. In the following paragraphs, you’ll read each of our reflections looking back on a summer of hard and rewarding exploration.