By Erika Grumet
In college, one of my friends used to say “dancing is a vertical expression of a horizontal desire.” We would go dancing at least once a week, almost every Saturday night was reserved for going to Tracks, a big gay dance club in Washington DC. Some weeks, when money was tighter, we’d go early, when there was no cover and the club was empty, and wander and dance until it got busy and crowded, and smoke and drag queens crowded the bathroom (the men’s room was for masculine men to use as intended, and for men to hook up… everyone else was in the other bathroom.) When the crowds showed up, it was like being caught in a riptide, I’d fade into another state of being, moving with the pounding rhythm, watching the people who were watching me but not really seeing anything, just existing and moving, not noticing until the night ended how my feet hurt, or my muscles were sore, and, after a late-night meal with friends, the location entirely determined by whether our budgets required us to use our university meal plan, always grateful for the embrace of my mattress, and sometimes the company of someone else.
After the Pulse shooting here in Orlando came the “Keep Dancing, Orlando” campaign, and, while it may sound trite, it was one of the things that would lift up my mood in some of the dark moments during the weeks that followed… and it was a way to talk with my kids about how people far away were helping to take care of the mental health of people in Orlando. (I don’t normally use the phrase “taking care of mental health,” though. I much prefer to call it “fighting off the brain-weasels.”)
One of the memories closest to my heart was the night I was at a Dance New England event with someone I was dating at the time. I was about 21, and still struggling with the kind of body-confidence-issues and insecurity that so many people, especially women, face. I was wearing a black t-shirt and super-soft dark green pants (my favorite thing to wear to these events). It was very warm, so I’d pushed the elastic cuffs up over my calves. I was sweaty and barefoot, my hair was a mess, and I was there for the joy of movement, which was all that mattered. And my date came to me while I was getting a drink and catching my breath and said to me, “I love watching you dance. You look like you’re at home in your body.”
I needed those words. They made such an impact on me, and really did describe how I felt when I was dancing. It wasn’t about anyone or anything else, it was about moving joyfully, and feeling present, and loving what my body could do or what I could do with my body (which way that went depended on whether I was being watched and whether or not I wanted to be watched.) It was a turning point for me in the confidence I had. No matter what I was wearing, I felt a kind of ownership of my own body and my own self when I was dancing.
Even when going out to a club on a Saturday night or to other dance-focused events wasn’t a part of my life anymore, I still loved a good living room dance party with my kids or “car dancing” while we were driving somewhere and a really good song came on. Just dancing around the kitchen while cooking and listening to good music was fun.
I’ve been dealing with joint issues my whole life, and chronic pain (which turned out to be fibromyalgia, but it took thirty years to diagnose that) since I was fifteen. In the last few years, I added another connective tissue disorder to my tally, and, if avoiding COVID wasn’t enough stress, in 2020, I got sick enough to need to spend about a month recovering… first in the hospital and then in a rehab facility. That hospital stay meant that in some ways I was “better,” but it also meant I could no longer ignore or downplay (as much) the permanent impact that just dealing with things was having, and would continue to have. I came home with a walker, a wheelchair, a chip on my shoulder, and a lot of new things to learn.
There were a lot of basic things I had to learn to do while managing the new equipment. Try manipulating a walker (which requires two hands,) and carrying your groceries into the house, or feeding the cats. Stepping over the edge of the bathtub? That’s new and different, too. My favorite brunch place? Parking is a minimum of several blocks away. Then it requires going up stairs to enter. Going to brunch there with mobility gear also requires entering through a back entrance, making your way all the way to the front of the restaurant and then being shown to your table. There’s also the way you can’t get a wheelchair under the bathroom sink, which means if I’m using my chair (which I prefer when I go out), washing my hands would be as if you got a chair (make sure it’s got armrests), set it in front of your bathroom sink, had a seat, and then tried to wash your hands. It complicates things. How about moving a basket of laundry? I’m sure that watching me manipulate a bag of trash into the city-issued trash can (which is almost as tall as I am) is probably quite entertaining.
Losing simple things that bring joy…that’s one of the hardest things. Wandering the aisles of the bookstore or the yarn store is now much more complicated, especially if aisles are narrow or places are crowded. If I want to go enjoy the park? Only if there’s a safe path to walk, and it should be no surprise to anyone that one of our favorite playgrounds doesn’t have any kind of a path at all from the parking lot to the playground, which means it’s off limits for me, because the uneven terrain makes it unsafe with the walker and nearly impossible with the wheelchair.
The chair makes me into an object, not a person; instead of asking me to let them by, they’ll just move me out of the way. While I have your attention: don’t ever do that to someone in a wheelchair, and don’t assume that, just because I’m in a wheelchair, I can’t walk.
It was a relief to finally have answers to why everything hurt. It meant there was a way to start controlling how much it hurt, because it’s never not going to. There might not be a way to stop all the joints popping out of place all the time; knees still need popping back where they belong regularly, and there are some things that I do that make most people squirm, but things like ankle braces have made others more stable. But that relief is fragile, and the grief and anger are deep.
Anger that it took so many years to get answers.
Anger that people don’t know how to deal with disabled people.
Anger that I have to ask for so much help and so much consideration, but also that I feel like asking for consideration is burdensome and I don’t know how to advocate better for my own needs in this arena.
Grief for things that have changed so much that it’s now onerous to do them.
But emotions, like so many other things for anyone who doesn’t fit whatever is the ideal, the pinnacle, the prime example of (fill in the blank here), are policed. I’m not supposed to be angry. I’m not supposed to be sad. I should be grateful for the opportunities I have. I should appreciate the so-called help (which isn’t necessarily helpful… don’t grab a door from my hand if I’m holding on to it, please, and if you’re going to hold a door open for me while I steer my chair through it, where you stand when you’re holding it does matter. And I do know that a lot of your motivation is about doing what makes you feel good, not what I need.)
I am supposed to be some kind of inspiration to other people because I’m overcoming challenges. But I miss dancing, and that makes me sad. I get frustrated at the amount of extra time it takes to do everyday things. I worry about being able to go to places I love (it’s far too complicated to get into now, but the way the medical establishment devalues disabled lives makes the risk of COVID exponentially greater.) I’m not interested in being inspirational for just existing. I’m learning to live my disabled life, which means discovering who is trying to silence that voice, and who doesn’t want me to express the whole range of emotions. I’m guarding my time a lot more carefully. I don’t have time to fake it so other people aren’t uncomfortable anymore. My whole disabled life means whole; all the labels, all the emotions, every part of me. And if that means I have to learn to be angry sometimes, I’m going to do that.