Mask Off- Marching to the Beat of Billy’s Drum
Billy and I met in early 2021 at the Jewish Association for Residential Care (JARC), an independent living group home for adults with intellectual and developmental disabilities. The pandemic was still raging, so we were conducting sessions outdoors, fully masked, and very socially distanced. I was worried that it’d be too difficult to be interactive this way, that it’d feel impersonal and clinical. I was worried particularly about this location because many residents here have difficulty speaking at all or speaking clearly, so adding in these extra barriers felt like an insurmountable hurdle. I thought I’d never be able to forge meaningful connections here under these circumstances… until I met Billy.
For the first year that we worked together, I only saw the top half of Billy’s face peeking up above his mask, but he quickly made himself known to me. To know Billy is to love him- there is simply no alternative. When I call his name and he turns to greet me, pure sunshine emerges from his face. He grins with a warmth that settles into my bones, melting away any lingering traces of sadness or stress. His eyes glitter as he says, “I love you,” and there’s no doubt that the love he feels, the love and friendship we share together, is as pure a force as exists in this world. He is just one of those remarkable people, around whom everyone immediately feels comfortable. He loves to sing, often asking to take control of the session and “count off” whoever is playing guitar, instructing them on how to play one of his original songs correctly. Sitting is much too boring for Billy, who is always playing a tambourine and dancing, making everyone around him laugh with his signature Elvis rubber-legs move. He marches to the beat of his own drum. Slow song? Fast dance. Doesn’t know the lyrics? Writes his own. Billy is unapologetically himself, a trait I admire tremendously.
I am cognizant of the way I write and speak about my friendship with Billy. He has Down Syndrome, as do many of the people I work with at JARC. The way society often talks about people with Down Syndrome is infantilizing at best- speaking to them like children and implying that they are angelic and brought to earth as blessings because they are so pure and innocent. To be clear, Billy is a blessing to me, not because he has Down Syndrome, but because he’s Billy. Because he’s funny, he’s kind, he’s a good friend. Billy cannot be fit into a box, into whatever society’s expectations are for him. As a woman with my own disability, my connection with Billy is so special because we are equals; people who live with our disabilities, who rise above stereotypes, who have learned to march to the beats of our own drums as we walk proudly together through the world, hand in hand.
