I’m nervous as we settle into our seats at the PrivateBank Theatre in Chicago. Hamilton is going to be loud. The tickets were expensive. I’m not sure my kids can stay up this late. But here we are. My son, a 10-year-old non-verbal boy with Down syndrome, has been listening to the soundtrack for well over a year, so we finally bought tickets, despite all the complexities of bringing kids to a big-time, late-night theater show. We have an ace in the hole—a $15 pair of bright green hearing protectors, sized for a kid.
Too often, our choices about accessibility are driven by shame and stigma. We live in an “ableist” society that judges people based on how closely they conform to perceived physical and neurological norms. Walking through the theater in bright green headphones is not “normal.” But that simple tool turned a trip to see Hamilton into a magical, joyful experience for all of us. Instead of demanding my son conform to the environment, we’re giving him the tools to control his environment.
Hamilton, as I’ve written before, is particularly important to my son. Something about the music and lyrics sparks him to experiment with his own sounds and words. It’s helped him with his own communication strategies as we have embarked on our slow, gorgeous process of finding ways for us to communicate. I will never forget the day he surprised me at breakfast by saying, in time to the music, “Awesome, wow.”
It’s a very different experience, though, to go to the theater instead of zipping through the music on his tablet. We worried about his reaction to the volume, his willingness to stay in his seat, the possibilities of disturbing other guests, and more. We called the theater to talk accommodations, but didn’t even really know what to ask for. In the end, the staff, who were extremely helpful, moved us to accessible seating so we’d have easy egress if things went wrong. Still, he slowed down and resisted as we approached the actual theater, the crowd surging around us. Then he reached for his headphones, put them on, and walked calmly to his seat. The lights dimmed. Aaron Burr took the stage.
Instead of demanding my son conform to the environment, we’re giving him the tools to control his environment.
My son’s relationship with sound is highly specific. It’s not just about volume. He likes loud music, but not amplified speech. He likes the rumbling of vehicles and even sirens at a distance, but not automated hand dryers or flushing toilets. I wish I knew exactly what sounds would bother him and why, but we’ve learned to be prepared. It took us a while, though, to adapt to his needs. Because of this variability, one not defined by decibel level or frequency, I initially approached his reactions to sounds (putting his hands over his ears, refusing to go into a bathroom stall, etc.) as a problem we should help him overcome. I saw it not as a physical pain issue, but as “just” a behavior.
But so what that it was “just” a behavior and not about pain? As the patterns of behavior became clear, rather than trying to push him to be different than he is, we adapted. In this case, the adaptation involves purchasing these bright green headphones, which he selected from a page on Amazon.com that we showed him.
They’ve changed everything for our interactions in public spaces. Crowds, once so stressful, have become fun. Our local Fourth of July parade begins with a convoy of emergency vehicles blaring their sirens. My son loves fire trucks. For the first time at this Fourth of July, he was able to stand outside and watch them roll by. As he began a new year at a new school, he’s learned to carry his headphones with him in his backpack, pull them out when teachers make loud announcements into a microphone at lunch, then put them away.
(Photo: David Perry)
They also help with bathrooms, an immensely fraught space for conflicting accessibility concerns throughout the disability community. Automated flushers and hand dryers are more accessible for many disabled people, not to mention more hygienic. For my son, the loud noises have often rendered it impossible to use bathrooms when traveling. Now, we just hand him headphones and he, independently, can use any facility.
But enough about bathrooms. Back to Hamilton.
My son has perfected the art of dancing without leaving his chair. At Hamilton, I watch as he sways in time to the music, moves his hands in mimicry of the actors on stage, and yet keeps from banging other patrons or making too much noise. As I watch him, I regret how long it took us to buy these bright green lifesavers. As his reaction to certain kinds of sounds intensified over the past few years, I was too slow to give him this simple tool. I just tried to convince him that “it would be OK” to walk past the blaring hand dryer. It wasn’t OK. Now he doesn’t have to put up with the sound, but can still dry his hands.
I know far too many people who hesitate to meet access needs if doing so involves revealing disability.
I’m not alone. I know far too many people with disabilities, family members of people with disabilities, and other caregivers who hesitate to meet access needs if doing so involves revealing disability. Hearing aids are expensive because they try to be invisible while containing complex electronics. Some of the most interesting new hearing amplifiers are highly visible, giving the makers more room to embed computers to process sound.
On Twitter, AbbyLeigh C., a 23-year-old woman with Crohn’s disease and multiple forms of arthritis, wrote at length about her reluctance to use a wheelchair when in college. She exhausted herself walking, trying not to “give up” by using a chair, and eventually took a medical leave from school. Now working on her last few credits, she says, “Once I stopped hurting myself by pushing myself, and accepted having to use the wheelchair, and got out of bed—I started to get less sick.” She told me over direct message that her wheelchair allowed her to get back out into the world, which “was a crucial moment for me getting back to feeling like a real person.”
My son’s needs are specific, but they are neither special nor abnormal. Whenever any of us encounter disability, we must stop letting our sense of the “normal” shape the choices we make either for ourselves or for others. Best of all, my concerns about people staring at his headphones were completely unfounded. Everyone was too happy watching him dance.
We made it to the end of the show, though both kids were exhausted by the time of the final bow, and we quickly slipped out into the night. Outside, he handed me his headphones, pointed up at the bright golden marquee, and said, “Bye Hamilton.”
