It’s like this (I use the analogy): Imagine you’re in a wheelchair, you get to the doorway, and there are stairs – lots of them. So you get out of your chair and you haul yourself up, step-by-step. But that’s not all. As you climb, you are hit on the head over and over. You slide over needles and nails. Other people walk on by. When you reach the top, the others go on into the gathering and sit down – but for you there are more stairs and you are injured. You will go home injured without anyone knowing you were even there. Do you understand?
I didn’t exactly write this to the person hosting a house concert. In our email exchange I politely asked her questions about each of the things in her house that can trigger a chain reaction of responses in my body because I live with, and am disabled with MCS (Multiple Chemical Sensitivity). All I’m asking for, I pleaded to the person hosting the house concert, is a chance to come and hear the performer. Yes, I am asking you not to turn on your gas stove. I’m asking you to put away all the Sharpies, the paraffin candles or sterno heaters. We’ve already established that you haven’t painted the rooms in the last six months.Yes, I say once again, I understand that you cannot control what fragrances or bodycare products people wear when they come to your event. I am prepared for this. I wear a carbon-filter mask. We’ll do the best we can, I say. I reassure her that as a disabled person, I know what I need to survive.
But, I was talking to myself again because the concert host was unsure she could invite me after all, and the emails dried up.
MCS is an isolating, hidden disability. With exposures to petrochemicals, my body shuts down over days and weeks until sometimes I’m really on the deathbed. It’s hard to explain this kind of dysfunction in soundbites. Every outing requires researching the location, talking with the event planner and advocating that with a few accommodations and a dose of generosity, I can be included; that I know what works; that I use an enormous amount of creativity to assess each situation. That I live with this disability every minute of my life. All I want is inclusion.
When I go into public I wear my blue carbon-filter mask that makes me look like a bank robber, and I led the fashion trend pre-Covid because I’ve been wearing a mask in public for twenty-five years. But I am limited where I can go. My mask won’t protect me from the thick chemical atmosphere of grocery stores, nor drugstores, and hand sanitizers are now deadly for me – but I was once able to go to a movie theater with my teen, wearing my mask. Ironically, pre-Covid I was perceived to be a terrorist—or that I carried contagions when all I was trying to do was survive.
Without my mask I’m perceived as a person free of disability. One time when I was parking my car mask-free and I hung up my disability permit, the passing meter reader skeptically told me that I didn’t look disabled. I’m certain the meter reader didn’t know that to be officially disabled, a person must prove difficulty “in all areas of life functioning”—including details from body care and sex life. It’s a bizarre and sometimes demeaning proving up. Many of us aren’t stereotypical.
In public, Pre-Covid, children stared at me in my mask, teetering between fear and curiosity. I thought then of the questions of the symbolic child in the Passover ceremony. Here, the Fearful Child asks her parent, Why is that lady wearing a mask? Whereas the Curious Child looks to me and asks, Why are you wearing that mask? I pull down my mask and explain, So I can breathe and not get sick. Thank you for your question. It’s good to try to understand.
Sometimes, I think I should have a special badge or elaborate identity card that marks me as a human being hidden behind disability. Or a superhero cape. Pre-Covid I wished I had a sticker that said Disabled and Proud – Ask Me About It. Or, Behind This Mask, I’m Really Good-looking!
Visiting colleges with my teen, I found the perfect badge in the accessibility office. On the counter were disability-positive stickers. Instead of an international symbol of a white stick figure in a wheelchair, the figure was standing. At its feet was the pale blue shadow of the standard wheelchair image. The words of the sticker: (in white) not every disability (in faded blue) is visible. I took one and put it on.
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That was before Covid-19 changed the landscape for everyone.
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In the beginning of Covid reality, people got to work on masks, and mask patterns became available online. Entrepreneurs created masks with all kinds of themes and designs. All at once, I was no longer alone as a masked person in public. Other adaptations quickly came along – restaurants, grocery stores began offering delivery and curbside pickup – services I had previously sought as accommodations. And when it really became apparent that we would be in isolation for the long haul, people in my life and people across the world chose real-time video platforms for sharing meetings, social time, conferences, performances, readings, and workshops.
Startling and strange, Covid pulled me out of isolation and back into community with chances to sit online in a group with a cup of coffee and have a conversation, or to attend poetry and prose readings. Most surprising, this epidemic has given me opportunities to participate in Zoom readings and to lead writing workshops from the stability, security, and comfort of my home. The lesson for me is this: When everyone had to experience the isolation my disability has forced me to live with for so long, the world changed.
Catherine Young is a writer and performing artist whose work is infused with a keen sense of place. She is author of the poetry collection Geosmin (scent of soil). Her prose and poetry has been published in anthologies and literary journals internationally and nationally and has been nominated for Pushcart Prize and Best American Essays. She worked as a national park ranger, farmer, educator, and mother before completing her MFA in Creative Writing at the University of British Columbia. She holds degrees in Environmental Science, Physical Geography, and Education from the University of Wisconsin-Madison. Catherine leads virtual writing workshops, and records the weekly podcast Landward. Rooted in farm life, Catherine lives with her family in the Upper Midwest. For more information, writings and podcasts, visit http://www.catherineyoungwriter.com/