Infantilization and Ableism: Quiet, Insidious, Omnipresent

We must recognize when we are treating disabled people like babies—and stop it.

Psychology Today, November 27, 2018

This fall, when my son’s rock band chose We Will Rock You/We are the Champions as part of their lineup, I was a little disappointed. Despite this newest rise of Queen, the song felt kind of stale. I had loved Queen in the sixth grade, laughed about them in “Wayne’s World,” but now —I feared I’d be bored. And I never miss a rehearsal, nor concert, so I’d be hearing the song a lot.

I do love Nat’s band, The Brookline Buds. Like all musicians, they are an unusual bunch. But unlike many bands, they all have developmental disabilities, and the corresponding challenges, like social issues, communication difficulties, and sometimes inappropriate behavior. But some of the bandmates are blessed with that autistic focus or have genius-level music skills. One guy, Stef, has perfect pitch, astounding recall, and probably sees the scales in his sleep. Some of the other bandmates are not skilled like that; Nat can only speak in small tight clusters of words but sings in complete sentences. He sings without melody, rap-style. Laura, who is way under five feet tall, pops around the stage like a firecracker. Her joie de vivre is so striking, and adorable, that it is the main thing you notice about her. When I first met her, I was shocked to find out she was 20.

A few weeks ago I was a little resentful that I had to go to the rehearsal. Sometimes it’s really hard to be the mother I have to be. But he needs me so much. I have to go to Nat’s rehearsals because now, Nat expects it. It is on his schedule, which is important to Nat on a biblical level. His autistic neural connections grasp for order, like a desperate octopus, and routines remain ensnared in his brain.

I settled myself into the hard plastic chair and got out my phone to pass the time. The Buds started with that old Standells’ song about Boston, “Dirty Water.” When I heard Nat’s voice, my mood started to lift a little. His sweet enthusiasm moves me every time. I started to pay better attention.

Finally, they got to “We Will Rock You.” My eye was caught by Laura. A while back the band had celebrated her 21st birthday, and while we were diving into her pink birthday cake, I learned from her happy shouts and gestures that she was crazy about the song. She got us all doing the iconic stomp-stomp/clap at the party, and now she expects it, every single time.

We all started that clapping and Stef and Nat started to shout the words, their angry a capella ringing throughout the room. Stef, with his crystalline sense of timing, carried Nat and the others into that familiar, achingly triumphant anthem. I noticed Laura waving the black maracas, so serious, so intent on her task. It shook me. In her little pink sweats, her bouncy ponytail, she seemed so young, so vulnerable. And yet —there she was, giving her all like —like what? Like a “real” musician.

Had I never seen this before? But no. Ashamed, I realized that —even though I consider myself “woke” and not ableistĀ­ —I still see her as merely an adorable sweetheart. But she’s so much more than that. She’s an adult. A woman, not a child. And a trained musician. And she doesn’t need me to be her Mommy.

I sat up straight. How ironic, that I’d been thinking about how I have to go to rehearsals even when I’m tired. How my son is just so disabled that everything is so hard. Poor me. And despite his challenges, does he think of himself that way? No, he’s just trying to live his life. He’s just a guy in the band, concentrating on his part in the song.

Everything felt different now, spiced with something sharp —this new awareness. This new respect. But hadn’t I always respected them? No, not like this. I think I was finally seeing them all as the serious, committed adults they are, and not just sweet “special” friends playing together. And it was riveting to witness this reality: that for them, nothing else mattered but the song, getting it right. Forget tiredness, forget boredom. Forget what society gets wrong about you, all the time. No matter what the Buds face outside of those walls, their music prevails. The band is everything to them, bigger than all of them. Because when they are playing together, there’s no time for losers.