I start every journal with a note to self: “Here’s your permission to ruin the first page.” Lately, though, with our country’s leadership using words like “tragedy” to describe autistic people like me, it’s hard to feel like I have the space to ruin much of anything — even if only a page in my journal no one else will ever read.
In my senior year at Pitt in 2014, I took a writing-intensive course taught by Geeta Kothari, called “Writer’s Journal,” in which we had a semester-long assignment: Fill at least three pages of your journal every day. Early in the semester, I found myself suddenly unable to write. My mind was full of words, but the pages of my journal remained empty.
I began arriving to class early to talk to Geeta in hopes I could communicate my difficulties and ask for help, but I struggled to explain what the problem was. As an English writing major who enjoyed cramming my schedule with multiple writing-intensive classes each semester — enough to make my academic advisor continually question my life choices — this was a big change.
Though I relied on writing to express myself, the fear of doing so paralyzed me. To my brain, neither my love for writing nor impending assignment deadlines mattered; the words were not coming. Words were my currency, and suddenly, I was broke.
Geeta was the one to suggest I begin each journal by giving myself permission to mess up.
Doing so allows me to temporarily unlock myself from a kind of creative paralysis that frequently envelops me, making words feel inaccessible and turning my life story into a lump caught in my throat.
Noise-canceling headphones and RFK Jr.
It’s hard to disentangle what part of the problem is me and what part of it is the world we live in. As an autistic person, I feel the pull to share my story as much as I feel the pull to hide my truth and never discuss it. I know that the stress is far from being just mine — many others feel it, too. So much feels tenuous right now.
Sometimes I wear my noise-canceling headphones to block out the news — the noise — but I can still hear what people are saying about autism and autistic people, the way our disabled and autistic existence “destroys families,” is “an individual tragedy” and that “we need to put an end to it,” as Health and Human Services Secretary Robert F. Kennedy Jr. put it.
Unfortunately, the sentiment is far from new. Even so-called “advocacy groups” have articulated similar views; in 2009, Autism Speaks aired their “I Am Autism” commercial, in which an ominous, off-screen voice talks over dramatic background music: “You have no cure for me. Your scientists don’t have the resources, and I relish their desperation,” adding, “I will make sure that every day you wake up, you will cry.” These statements come with a clear message: An autism diagnosis is like a social cancer that will ruin an entire ecosystem of otherwise loving and caring people.
Though writing and photography help me interact and cope with both the world within me and around me, I can’t escape the fear that it is all for naught — that no matter how artfully I share my experience, there are tons of people who are breathing a sigh of relief that it’s not their child who is autistic, disabled and, perhaps even worse, talking about it.
Shy photographers and reluctant mirrors
Recently, I’ve noticed many people have stopped asking me, “How are you?” Instead, they ask, “Are you still writing, taking photos?” To that I say: sometimes, and sometimes. I’m trying to turn each “sometimes” into an “always,” a definitive yes, turning to art as often as I need. But I haven’t gotten to that point. Yet. Instead, I take thousands of photos I love but can’t bring myself to post, and write poems and essays that exist, unshared, in my Notes app among a graveyard of reminders, good quotes, to-do lists.
For me, photography is about finding beauty in the mundane. I often gravitate toward a kind of grittiness in my photos and feel more joy photographing aging infrastructure and urban decay than I do capturing a sunrise from the West End Bridge. My hope is that my work encourages people to look twice at things they otherwise don’t even notice once.
Posting photos feels like a commitment, a kind of declaration: “This is the best way I could capture this moment.” But the pursuit of “the best” doesn’t always feel like a fun challenge; instead, I feel my own brain breathing down my neck. I become bogged down by the idea that I could come back to the same spot tomorrow, next week, next month, and compose the photo even better. And so I wonder: Why knowingly share an imperfect photo?
The time between pressing the shutter button, feeling proud of what I’ve captured and deciding to share the photograph with others can take a while — anywhere from minutes to years.
Recently, a friend and I were texting about the importance of seeing someone in the world you can relate to, the way that person becomes a mirror for your future self, evidence that your own future is possible. For me, art is that mirror. Just as others’ art has shown me the way, I wonder if my art could ever provide that for someone else. While I would be honored if that were the case, I am also overwhelmed at the thought of it.
Right now, being visible terrifies me as much as being invisible isolates me. Sharing art feels more dangerous than ever because being visible feels more dangerous than ever. I turn to art as a refuge, but sometimes it cannot be the place I hide; art demands that I be my truest self, and that is what makes it both necessary and impossible.
Eli Kurs-Lasky is a Pittsburgh native who navigates the city, and this chaotic world, through writing and photography (self-taught). He can be reached at eli.kurslasky@gmail.com.
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