For a generation of young men and women, the now ubiquitous Jumpman logo which adorns Michael Jordan’s signature shoe line represents the idea of having endless possibilities – whether a tangible hoop dream – or other pursuits which may seem at first as daunting as floating from the free throw line and dunking a basketball.
While most of those same people will never come close to achieving what Jordan did both on and off the court, there’s still a shared kinship in the idea that being able bodied – with the use of all four limbs – is the prerequisite for dreaming big.
After Michael Jordan retired for the final time in 2003, his shoes have become less about the athleticism he displayed on court, and more so a lifestyle brand, with the Jumpman being akin to a skeleton key which allows wearers access to various social interactions where fashion on feels is almost as important as the content of one’s character.
Ask any young person, and they’ll tell you that shoes can tell a story before the people wearing them are afforded the chance to tell their own.
The genetic combination of muscular dystrophy and Ehlers-Danlos Syndrome was supposed to kill Robert Mota before his 20th birthday. There was the daily, physical reminder he endured on his 5-foot, 75-pound frame – which included the usage of a wheelchair as a result of joint hyper-mobility which makes his limbs and skin able to stretch beyond what is typically seen in the human anatomy.
There was also the fate of his younger brother, Christopher, who was also diagnosed with Ehlers-Danlos, and had passed away in front of Robert when they were just four and seven years old, respectively.
Mota admits that Christopher’s death was hard to process at such a young age. However, he recalls that it expedited his maturation, and planted a seed in the back of his mind that he wanted to “live up” and become a better person.
“I’d give anything to bring him back,” Mota admits. “He’s the fire behind my heart that keeps me going.”
Despite that little voice in the back of his head telling him to make the most out of his life, Christopher’s death wasn’t easy to move past. Mota found himself like so many other Americans living with disabilities who felt trapped in their own bubbles due to his own mobility issues, the mental toll of monitoring a ticking clock on his own mortality, and the torment he faced from those who ridiculed him because of his genetic disorder.
“I never liked venturing out in the world to do store runs with my parents, or even wanting to go to family parties because of not liking everyone staring at me,” he admits. “I mainly spent several hours on video games just trying to keep my mind off of being who I was.”
According to the University of North Carolina, studies have shown that depression may be two to 10 times more common in individuals with disabilities or with chronic illnesses.
The same analysis points to factors like “social barriers” as a major disconnect between those with disabilities, and those without. For example, people that don’t want to offend a person in a wheelchair are unsure if it’s more polite to completely avoid eye contact, or if they should engage the person and speak to the so-called elephant in the room by asking about their condition.
Mindy Scheier, who operates the Runway of Dreams Foundation, a nonprofit which focuses on furthering inclusion, acceptance and opportunity in the fashion industry for people with disabilities, can speak to these challenges firsthand. Her son, Oliver, lives with muscular dystrophy.
“I think it’s important to teach children with disabilities to dispel curiosity in others and talk about what is going on,” she says. “On the flip side, it’s important for others to know that people with disabilities welcome an open conversation about their story, and in fact, they want to tell you about it. Having these conversations with one another is the only way we can move towards a completely inclusive society.”
For those living on borrowed time like Robert, there’s often the expectation to do extraordinary things to make up for the experiences that are being robbed from them. These often get manifested as “bucket lists” or as wishes granted by the Make-A-Wish Foundation where moments need to be exponentially magnified to warrant the gravity of a person’s fight with a disease.
For Robert Mota, he just wanted to be like any other teenager. There was no escaping his 350-pound wheelchair. That much was clear. Yet, he soon discovered that he could make it disappear – albeit temporarily – if the initial attention was on something else.
His new story to tell.
Robert was first introduced to Jordan sneakers when he was 13 years old by his cousin, Gabriel. After purchasing a pair of his own, the impact was almost instantaneous.
“I noticed people looking at my shoes before they saw the wheelchair,” Mota says. When he tells it, it’s almost as if he’s recalling a distant magic trick where the reveal continues to be an effect that gives him great pleasure.
His mother, Maria, recognized the changes in her son almost immediately. She had always brought Robert up in a way where he wasn’t coddled or treated differently. She knew too well that the world wouldn’t be an accommodating place.
With each new pair of shoe that he purchased – like the Doernbecher 4s and Pollito 9s – the problems he often encountered while out in public seemed to dissipate. The judgmental questions about his stature were replaced with a different type of inquisition; people assumed that someone in a wheelchair wouldn’t care enough about their shoes to buy an authentic pair, and continued a preconceived notion that accessorizing in the disabled community meant utilitarian fare like oxygen tanks, wheelchairs, crutches and orthotics.
In terms of social progress for Robert, getting accused of wearing counterfeit sneakers was actually a good thing. For once, people were enviable of him. And suddenly, that call-to-action he had felt after his brother’s death didn’t seem as arduous a task to accomplish.
The usage of an alter-ego is often reserved for comic book heroes. Doctor Mid-Nite, developed by DC Comics, is widely considered the first disabled superhero character, when he, and his vision impairment first graced comic book pages in 1941. Subsequently, other heroes followed who all faced physical challenges; Freddy Freeman, the alter ego of Captain Marvel Jr., used a crutch, Misty Knight was as an amputee, and Echo was deaf.
Buoyed by the interactions he was having with people curious both about his shoes and his condition, Robert Mota decided to adopt an alter ego of his own, “Crippled Swagg,” which would continue to break down barriers and show that someone with a disability values “lifestyle” just like everyone else.
Photographer, Kenneth Cappello, who has shot major brand campaigns for Nike and Supreme, took note, saying, “It’s so cool to see him at every hip-hop show of his favorite rappers, partying with everyone else, hollering at chicks [and] talking shit. I couldn’t imagine it if I was him being able to do that. It’s just really inspiring to me. I imagine if I passed Robert in the street, he’d be sipping on a drink, singing his favorite song, while sneaker shopping. And I’m into that.”
As for the moniker itself, Mota was quite aware of how the combination of words could be used as a form of self-deprecating humor.
“Some people not might want to overstep and say something out of bounds, so I feel like if I do that for them, they can see me for me, and they’re like, ‘oh he’s a little jokester, he’s okay with it,'” Mota says.
For some, the antiquated word “crippled” seems to suggest an old-world mentality where the sick and physically challenged were tossed away. The term to replace it – handicapped – is also rooted in old-world thinking; suggesting even more so that “crippled” is as egregious a term as racial epithets used during the Civil War and World War II.
But in recent years, there has been an attempt in the disabled community to take ownership of the pejorative.
Robyn Lambird, a competitive wheelchair racer with cerebral palsy, who was included in a Target campaign for athleticwear in her native Australia in 2016, is amongst those who sees the value in Mota’s moniker.
“For me, reclaiming a word such as ‘cripple,’ that has had such negative connotations is very empowering,” Lambird says. “If I can show people that I am strong, powerful, and cool, bearing a label like cripple, that goes a long way in dismantling the negative perceptions surrounding disability. Without my disability I honestly don’t know who I’d be, or what I’d be doing with my life, so it’s not something I want to distance myself from; it’s just something I need society to embrace.”
Annie Segara is a media personality and activist in the disabled community who also suffers from Ehlers-Danlos. Recently, she started the hashtag #HotPersonInAWheelchair. While her goal does mirror that of other activists fighting for equal access, she also points out that “we deserve to feel hot.”
It’s so simple, yet so effective a statement. For Robert, his shoes are equal parts body armor as they are a statement to the world that he – and so many others – have more to contribute than a heartwarming tale of resiliency.
One in five Americans have a disability. Yet major sneaker brands continue to rely on products touting inclusiveness that rely on one of two narratives; sickness or incapability.
Nike releases its Doernbecher collection, designed by critically ill children, their HyperAdapt technology which aids those who lack the proper mobility to tie their shoes, and their FLYEASE system, which has been useful for people who require orthotics (wedges and AFO’s).
Collectively, they are a positive step in the right direction. But people like Robert Mota and Robyn Lambird acknowledge that we mustn’t let these projects be the extent of the fight for inclusion.
“I think we have to show how inclusive and universal design benefits everyone and not just those with disabilities,” Lambird says. “At the end of the day it’s about celebrating good design, some thing can be very functional but if it doesn’t look good sneakerheads aren’t going to get behind it, you have to strike that balance.”
Mota believes more individuals with physical disabilities should be included in the tangible design process as well. People like him are not just sounding boards to bounce ideas off of. Shoe designers may think they are doing the disabled community a service by considering how they can make their life easier – which is a noble quest – but they’d also be wise to consider asking the simple question, “what makes you look and feel good?”
Robyn Lambird believes Mota’s design point is quite valid as well, saying, “There is a saying, ‘Nothing about us, without us,’ and I definitely think that’s the key here.”
For now, Mota seems to be at peace with whatever life has in store for him. Although sneakers were a driving force for him facing the world, he wants to make it clear – especially to parents of kids with disabilities – that they need to give their sons/daughters ample space to grow as people, and not just tout them as “brave” or as “survivors.”
“If it weren’t for my mom, Maria, letting me go out with friends, or choose how I want to dress, or even get tattoos or stay out late and go to concerts, I would’ve probably still been self-conscious about myself,” he says. “[To the parents], you have all had a crazy story to tell when you were younger. Let [your kids] live it out and have an exciting story to tell one day.”
Mota’s following his own advice. There are more tattoos to get, concerts to attend, and of course, shoes to buy.
“Once upon a time, I was that disabled kid that was afraid of the world,” he says. “But now I always see the brighter side of everything.”
Follow Robert on Instagram at Crippled_Swagg.