"With the growing recognition of World Duchenne Awareness Day on September 7, Congress returning to work after summer recess, our kids heading back to school and the need to reach out to teachers and administrators about Duchenne, September is the perfect month to take action to raise awareness and crucial funds to support our fight to End Duchenne." - The Parent Project Muscular Dystrophy Organization
Adam is a 42-year-old BAYADA client who wears many hats; he’s a comic book fan, a freelance director, an entertainment reviewer, and a writer. He channels his creativity in whatever ways he can. These days, he’s working on a book of short essays. We’ve seen short films he’s written, starred in, and edited. The last time we were at his house, his mom cleared the kitchen table and laid out a few pages of comics he’d drawn before his symptoms worsened. Drawing was his thing and Duchenne took that away.
An inherited disorder, Duchenne involves rapidly worsening muscle weakness. Symptoms usually appear before age six and include fatigue, muscle weakness in the legs and pelvis, difficulty with motor skills, frequent falls, and progressive difficulty walking. Eventually this muscle weakness spreads to the arms, neck, and other areas of the body, leading to difficulty breathing and paralysis.
When we first met Adam, we were a rag-tag crew of three rolling tripod cases and light kits through his home, apologizing for our presence and making jokes about traveling “light.” We were there to make a video honoring his nurse, Rachel, who had won the 2017 RN Hero of the Year Award. That story focused on the support she gave their entire family when Adam's brother, Danny, passed away from complications related to Duchenne muscular dystrophy. That day, upon entering Adam’s bedroom, we realized just how much of an authority we had on heroes. We were talking to the expert.
In his room, there are no empty spaces on the walls; there’s either an autographed photo or a portrait hanging. Every bookshelf is lined with fantasy novels, sci-fi classics, and comics—a curated collection. Any hard surface where an action figure can balance has one—X-Men, The Avengers, Batman, Superman, Spiderman, even the lesser known ones. His bedroom is a shrine to heroes, because he identifies with them.
“My friends and I have muscular dystrophy. We do not fight supervillains or crime. We don’t have magical powers or x-ray vision. My friends are heroes of a different sort. Every day, we fight a progressive and debilitating disease. We’re just a bunch of guys who try to enjoy life like everyone else. Sometimes that takes a lot of courage.” - Adam Blasucci, Who Are the Real Superheroes?
So, this year, when the Keystone Comic Con rolled around, BAYADA tagged along to witness him in his element. For Adam, it’s more than just making the decision and going the day-of; there’s a lot of prep and planning involved. Rachel packs a go-bag, which has the essentials Adam needs to eat (through a G-J tube) and use the bathroom, and for any trach/vent needs that might arise. Then, he has to get there—luckily, Adam’s family has a van with an electric lift, but strapping him in safely is time-consuming and stressful. Most people don’t have to think this deeply about traveling to a convention; they don’t realize what a gift that is.
But we’re off—Adam’s dad in the driver’s seat, Rachel’s older son sitting copilot. Her younger son is squeezed in the back with Rachel and me. Over the years, the two families became extensions of each other. I had heard about their close relationships when we filmed the video, but it was cool to see in person how close and comfortable everyone was with one another.
Parking in Philadelphia is already a hassle; convenient handicapped parking is next to nonexistent. Often, there’s a valet option, but as Adam’s dad, Bob, explained, it’s entirely dependent upon the garage and its height restrictions. This time, Bob dropped us off at a cut-out on Broad Street. It’s the kind of thing that couldn’t happen if it were just the two of them. Adam can’t just sit and wait by himself while his dad finds parking; he can’t move. Bob drove off with a wave, as Rachel pushed the wheelchair to the main entrance and said with a shrug, “Just another thing ‘walkers’ don’t need to think about.”
Once inside, we grabbed our passes and explored the showroom floor: aisles of comic book and manga purveyors, toy designers and their collectible figures and bobbleheads, stands selling apparel, cosplay weapons, board games, and booths for artists (comic and otherwise) to sign prints and speak up-close with their fans. One corner, designated for people to play video games (consoles, TVs, and controllers all provided), was roped off; and all the way to the left, people formed long lines roping around columns, waiting for photo ops with big names (for big $$). There was a wrestling stage, too, for some reason. And there were people of all ages, many in custom costumes of their favorite superhero, villain, anime character, video game character—but many in their civvies, too—wandering, taking photos of or with their favorite cosplayers, and just absorbing nerd culture without worry or judgment.
It’s loud, to say the least. They had planned for that, though; Adam had a mic that connected to a speaker behind his chair so Rachel could hear him. He recalled the schedule he had put together, and they searched out a few artists Adam wanted to meet. It’s crowded, of course. And Adam’s chair is big, which makes navigating the showroom floor a little trickier. People meander into our path without looking; they stop abruptly, not realizing anyone’s behind them. Rachel jokes that she’s not afraid to run anyone over. It’s a normal lack of consideration—not based in maliciousness, just excitement, attention-diverting stimuli—but it is a little different. It’s the lingering looks when someone apologizes for bumping into the chair. It’s how no one seems to realize that time is precious, because everything takes more time when you have a disability. Adam never complains. He waits patiently for his turn when he needs to, but luckily, most of the artists and their managers have him skip the line. They get it. When everyone’s lining up to get what they want as fast as they can get it, the view from the other side of the table is surprisingly gracious.
A few photo ops later and with new prints in tow, we head downstairs to attend a few panels. Our first is “I’m Still Here: What Fandoms Mean to People with Disabilities,” and it’s led by four panelists who begin the hour by introducing themselves and their disabilities. Then, they cycle through a slide show and poke fun at some of the tropes you often see in fandoms: how a person’s disability somehow makes them more powerful than a non-disabled person; Daredevil, or the blind man overcoming his lack of sight, because all his other senses are strengthened; the “genius cripple” syndrome, like Professor X; worse—the tendency towards “evil cripples” in fandoms. The panelists go back and forth, eliciting chuckles from the crowd, but they’re discussing this real lack of representation. It doesn’t feel good when you don’t see anyone like you in the media you consume. It sends the message that you’re different—that you’re somehow less.
At the end of the hour—they’ve gone a bit over time, and staff keep appearing in the doorway, raising their eyebrows meaningfully—they open the floor to questions. They’re meaty. For example, "How do I talk about my disability, so my friends really understand?” kind of meaty. One girl bursts into tears; she’s surprised by her own onslaught of emotion, and apologizes, but the panelists assure her it’s fine and make sure she’s okay at the end of it. Thanks are echoed again and again.
Our last panel was technically cancelled because the other panelist had to leave, but Denys Cowen, artist and co-founder of Milestone Media, hadn’t gotten the memo either. He studied the schedule, the duct tape with “Cancelled” written on it, just as confused as the rest of us. Denys shrugged and offered to do something impromptu if we were interested. So, that’s how ten of us sat in a circle and had an intimate, hour-long conversation with a comic book icon. He talked about his beginnings in comics, working on Batman, the founding of Milestone, Static Shock, what his work meant to people, how humbling it is to know you’ve changed lives. See, Milestone Media was created because the founders believed that minorities were severely underrepresented in American comics, and they wanted to tell stories that they could relate to, too. Denys told us about a fan—a tall, tough-looking African American guy with a low, gruff voice—who broke down meeting him at a Comic Con. He thanked Denys; he credited Static Shock for his learning to read. The guy to my right expressed similar sentiments: “I hadn’t seen someone who looks like me until Milestone.”
It just cemented the point from earlier—how important it is for people to see themselves represented in the things they love. How necessary it is to have stories like ours told. No humanness ranks higher than any other, no way of living is more worthwhile.
But even when disabilities are better represented in fandoms, many fans will still take inspiration from the heroes.
“Comic book heroes seem fearless and have superhuman strength and powers. A real hero is just an ordinary person facing extraordinary circumstances and handling them as best they can. Our true powers lie in the way we live our lives with dignity and courage and love." - Adam Blasucci, Who Are the Real Superheroes?