Skip to content
One night recently, my friend Neshama and I agreed to be helpers at my friend Karen's special-ed dance class. Neshama wanted to go because she is a lifelong dancer—modern, ballet, Bolinas tribal stomp. Also, perhaps some of you caught her act during the '60s, when she performed at a nightclub doing the Hippie Dance of Love. She is short, 65, fuzzy hair like me. We've been friends since I was 21 and drinking heavily, in Bolinas where we both lived. I am forty-eleven now, sober nearly 20 years, and have moved 10 miles away to another small tie-dyed town closer to San Francisco.
One thing I love about Neshama is that, like Karen, she is willing to try any endeavor that affords you the opportunity to shake up the Etch A Sketch of everything you suppose is true, a chance to question all your secret opinions: this thing is good, that is bad, this person is better than, this one is worse. I truly—or at least sort of—believe that we are all family, created of the same stuff, and that what is true for one of us is true for most of us. I pretend to believe that deep down, and even with all of my failings, I am just as innocent in God's eyes as a newborn: I think this should count for something—if not for full credit in heaven, then at least a few bonus coupons. At the same time, I secretly believe that God must love people with developmental disabilities much more than people like me, because they are better, more innocent, and did not bring their problems on themselves.
And yet, having confessed this, I know that humans want and need exactly same thing: to belong, to feel safe and respected. I also know that we don't live long. And that dancing almost always turns out to be a good idea. Rumi wrote, "Whatever there is, is only He, / your foot steps there in dancing: /The whirling, see, belongs to you, / and you belong to the whirling." I'm not any good at dancing, but Karen, in Coyote Trickster mode, got me to show up by promising that I'd get to be a helper.
So there I was in dance class. There were 18 adults of every age and degree of disability in the room at one of the Marin County rec centers. I had seen many of them before at the Special Olympics and bagging groceries at Safeway and on the streets around town, alone at bus stops or walking together in a crocodile of disability: gimpy, disoriented, eyes wandering. They wore the most tragically terrible clothing you could imagine, plaids with paisleys and bright florals, like wild and crazy guys. Karen introduced Neshama and me as that evening's helpers, and everyone murmured and hummed and exclaimed, "The helpers!" They came up to shake our hands or to stare at us close up, with awe. You'd have thought Paula Abdul had shown up. Some of them told us their names, and several people asked if we were going to dance.
"Yes," Neshama responded, although I had assumed I might help in a more ministerial way.
Down syndrome people look like one another's socially inept relatives, while autistic people look more like the rest of us, if perhaps a little tense. Within about 10 minutes, I discovered that when you speak to the people in dance class, the veil of illusion keeps dropping—the ones who look most like you often are the least available for ordinary human contact, while the ones who look seriously different often are the most responsive and engaged. One of the two prettiest women seemed very high-functioning, in a bossy, controlling way, while another pretty one seemed to be hanging in a hammock strung here and, well, there. Karen had warned me that you had to keep your eyes on one very shy, spherical Down syndrome woman, because she'd earned a reputation for performing dances that began innocently and then degenerated into cartoonishly lewd stripteases. Once at Christmastime, she'd gotten down to her undies while grinding along to Willie Nelson singing "Jingle Bells." But, hey, who hasn't?
We formed a circle and introduced ourselves to the people around us, formally, almost as if we were about to square dance, like we were about to do-si-do. Handshakes were so mannerly and respectful, it was like being presented to grateful visitors from another planet: "You have come all this way; I take your hand, I look you in the eye. We come in peace." One of the men was huge and reminded me of many of the men in New York who work behind butcher counters: sweaty, with a mustache disorder, a big gut, a baseball cap. Another wore a Giants T-shirt he obviously had mended himself. He wore a frayed rope over it, like a lost and confused belt. A number of them reminded me of sober men and women who once helped me, or whom I've tried to help, but with a lot fewer tattoos. I'm not comparing the hardship of being developmentally disabled to that of being an alcoholic or a drug addict, but in dance class, I noticed all sorts of parallels: the off-rhythm gait, the language you can't quite catch, the lack of coordination, the odd emotional affects—too friendly or too far away. Lots of bad teeth, screwed-up relationships or no relationships at all, their not-fitting-in-ness. It's incredibly touching when anyone seems so hopeless, yet finds a few inches of light to stand in, and makes it all work as well as they can. All of us lurch and fall, sit in the dirt, are helped to our feet, keep moving, feel like idiots, lose our balance, gain it, help others get back on their feet and keep going.
After introductions, we all did wiggly warmup stretches to classic James Brown, and when the song ended, everyone in the circle spun around like James, while screaming "Aaawwhhhooohhh." I was pretty good at this. So was a young woman with cerebral palsy, spinning in a wheelchair, grinning, her twiggy fingers curled like a witch's in a fairy tale. The stretches were hard for the heavier dancers, who were about half the class. They struggled like beautiful, ungainly marine mammals, short limbs and flippers and uncooperative bulges. But in wiggling, all people shine. Then it was time for sharing.
Everyone sat down in the circle and was invited to share just one thing about themselves: Karen had told me that she'd recently had to add this rule to put an end to long gossipy stories, some of which were hatchet jobs on other people who were present in the room. Karen invited everyone to share sad or scary stuff with her privately after class. They mostly shared about their relatives, sometimes angrily—"NO, MY NIECE STILL CAN'T SPEAK YET BECAUSE SHE IS ONLY 8 MONTHS OLD!" And sometimes with pride: "My nephew graduated from high school Saturday, and now he is going into the Marines. And be in charge!" They acted a lot like my relatives: interrupting and bossing each another, listening, jostling, showing off, arguing and trying to get extra attention. A number begged to share JUST ONE MORE THING. Some of them were willing to make exceptions, cut people a little slack. Others grew sullen or were on the verge of tears with worry when people didn't stick to the rules.
It turned out that most of them attend Weight Watchers together every week, and this kept being the One Thing they wanted to share, either with elation ("I lost 1/2 of a pound!") or tearfully ("I gained 1.3 pounds."). It made me laugh about my own bad dieting days—like, say, my 20s and 30s. The obsession takes on a whole new absurdity when it is being uttered by someone who is picking her nose while she's talking, or covered with food stains. But I know how it feels. During the worst of it, if I discovered that I had gone from 140 to 139.6, I felt triumphant, or if the opposite were true, panic rose into my throat, and I had to stuff it back down with food. I will never know how hard it is to be developmentally disabled, but I do know the sorrow of being ordinary, and that much of our lives is spent doing the crazy mental arithmetic of how we are at any given moment, calculating the ways in which we might improve, or at least disguise or present our defects and screw-ups in either more winsome or intimidating ways.
With half an hour left, it was time for the actual dance instruction. I thought it would be like doing the hokeypokey, but there were some tricky moves. The first was kick-ball-change-pivot, which has nothing to do with playing kickball, but is a modern dance step. First, you kick one foot, then put the ball of that foot on the floor. Then you do a pivot turn and end up in the same place using the same foot. It's surprisingly hard. I couldn't do it right. I cheated. I just turned. So sue me. My entire childhood flashed before my eyes: trying and failing to learn cheerleading moves and water ballet and chemistry.
Thankfully, Karen announced it was time for the Electric Slide, a version of a line dance that you might see in bars or on reruns of "Soul Train." You begin by tapping your feet three times—which I was good at. Excellent, really. Then the Raisin Bran scoop, where you scoop the air twice. Then some wiggles and a pivot turn—that infernal pivot turn! Then everyone moved forward together, pushing the air as if clearing a path, then backing up to where we started, quacking, for some reason. Then the pivot turn. Tapping, scoops, wiggles, pivot turn, pushing, quacking, pivot. The magnificence of the dance is in their faces.
We sat down again so people could do solos or ensembles in the center of the circle. The first solo was the woman with cerebral palsy, who during the group practices had done great swooping turns in her electric wheelchair. But for her solo, she sat smiling ecstatically and twitched her gnarled hands in time to the music. She was great. So was the music, a Congolese song called "Soweto." The next dancer, an older woman, earnestly counted every step out loud, unbothered that none of them coincided in any way with the music, her jaw set with a determination that bordered on hostility. Then a blond woman with Down syndrome performed what I thought at first were gymnastics: a somersault that pretty much got away from her, and a unique cartwheel—palms flat on the floor, then rocking back onto her bottom, and falling over sideways. Then jumping up and down in a one-legged crouch. Karen told me later that this was intended to be break dancing, performed weekly by the woman's alter ego, Home Girl from the 'Hood.
After the solos, ensembles of four or five did the Electric Slide together. I joined in with one batch. I was great; everyone said so. And then it was time to go. People shook our hands and thanked us. The gymnast gave me a hug with her head pressed into my waist. Neshama and I left feeling elated and surprisingly tired. It had been only an hour, but it was an immersion. It goes deeper than you think. When Karen and I were hiking a few days later, she told me that after class, one of the people had exclaimed, "I liked those old ladies! They were helpers, and they danced." These are the words I would want on my gravestone: That I was a helper, and that I danced.