I am tired of awareness. Why do we have more people talking about access to hospitalization instead of peer respite care? Where are our community-based supports? Where are our warmline projects to prevent crises? Where are our self-directed services? Where are they?
Awareness just isn’t enough unless it’s part of a process that leads from the short term feel-good to the long-term change, either structural change or real shifts, individually. So I wrote a feel-good story for the Washington Post about my son and music. It’s about learning to listen. Ideally, it goes somewhere. You judge.
Nico’s life is rich with language in many forms. Along with his oral speech, he signs and uses a speech app on his tablet (it’s a communication program in which he selects words and icons, or types out words, and then taps them to have them said aloud). He reads, either silently or by touching each word with his finger and saying them out loud. He speaks all the time, and together we — and by this I mean Nico, his family, his teachers, his classmates, his community — all work very hard to develop mutually intelligible pathways of communication. The effort to find ways to communicate belongs to all of us, not just to a person whose communication methods might be atypical.
…His ability to tell jokes around music seems to be empowering, allowing his natural sense of humor to flourish in ways more sophisticated than a good tickle. He grabs at a moment in “Hamilton” when he knows he can get a laugh. When the men of the show all sing, in unison, “With the ladies!” Nico does, too, raising his hands in the air and urging us to join in. Before “Hamilton,” he found a moment in “Death Valley Queen,” a song by the Irish rock band Flogging Molly (I’m an Irish rock musician), when the music surged from quiet to scream to the lyrics, “I have always loved you.” Nico would sit, fist in front of his face, poised like Rodin’s Thinker, then surge to his feet and shout, “Rock and roll!” as the music crested.
October is Down Syndrome Awareness Month. I’m not a big fan of disability awareness campaigns, generally, unless they lead us toward accepting people for who they are, for tearing down our own internal ableist narratives about normality or function. That’s my goal here, to take an anecdote about the surprising role played by streaming music technology that has allowed my son to reveal new depths of understanding. But those depths were always there, he just hadn’t shown them to me, or I just didn’t see.