As a journalist, I constantly speak to people. Strangers. People who might be very upset with me. Others who might be thrilled to talk with me.
Admittedly, it can be very scary.
That’s because growing up, talking was something that only happened at home and only around my immediate family. Many of my childhood memories include shutting down at school.
Just like my classmates, I wanted to shout answers, read the daily announcements, clap back at my bullies and sing in choir. But instead, I froze with fear. It was as if my brain and mouth weren’t connecting.
Eventually, after the persistence of my mother, who’d tried anything and everything to get me to talk, I was diagnosed with selective mutism at age 5. Selective mutism is an anxiety disorder characterized by a person’s inability to speak in certain circumstances.
What was then a mystery is becoming better understood, in part because the people who were once too afraid to speak are sharing their experiences out loud. And now, my journey is one of three central stories shared in a new documentary that has been a long time in the making called “Selective Mutism: Getting The Word Out.”
I first screened the documentary in November. Sitting in the seats at the Davis Theater in Lincoln Square, I saw footage recorded 12 years ago. I barely recognized the young woman in the film staring back at me. She looked like me, but she was even more soft-spoken and lacking in confidence than I remembered.
One of my co-participants in the film, Tyler, told me later that she felt the same way about watching herself on the big screen. She’s in a different, happier chapter of life now as a married woman and mom of two.
More than a decade ago, the filmmaker, Eve Keepings De Jesus, came across selective mutism through her previous work as a licensed counselor. She told me she began making the movie in an effort to help parents and teachers find answers — especially since so few professionals specialize in the condition, among other barriers, including financial ones, to treatment.
“If you don’t have discretionary income, you can’t take your kids to a therapist,” De Jesus said. “So it just goes undetected because you don’t have the resources to follow up on it. That is so unfair.”
I’d consider Tyler and me to be among the lucky ones: Our parents found us treatment when we were younger, and that’s what De Jesus’ film hopes to encourage more of. “Early diagnosis and intervention are key,” she said.
But there are others featured in the film who did not receive early support and who suffered as a result. The late Sue Cochrane, a former family court judge, grew up in the 70s and 80s. Her childhood, as she would write on her blog, was marked by “abuse, neglect and poverty,” and the unmistakable silence she would later learn was selective mutism.
In the film, she spoke openly about her sobriety. In college, she’d gotten used to using alcohol to cope. I was stunned by how familiar her story felt.
Not a week into my freshman year at DePaul University, I realized that I had no problem being social after having a few beers. It made it easier to do things I never could in high school, like party and talk to boys.
It’s not by chance that the three of us featured in the film are women. Experts say selective mutism affects approximately 1 in every 140 children in the U.S, is more common among girls, and that seven out of 10 children with the disorder come from bilingual homes, like mine.
Script writer Chris Castino (left) and filmmaker Eve Keepings De Jesus sit in the newly renovated Sojourn cocktail lounge at The Davis Theater in Lincoln Square on the North Side. Their documentary “Selective Mutism: Getting the Word Out” recently premiered at the theater.
Candace Dane Chambers/Sun-Times
The prevalence of the disorder among bilingual children gets addressed briefly in the movie, but it’s a big part of my own story. My elementary school counselor dismissed my parents’ concerns, asking them something along the lines of, “Does she even speak English?”
There was never a day in school when I wasn’t treated differently as one of the few Latino kids at a mostly-white suburban school and as someone who did not speak.
For years, I would only speak to seven people and then only under very specific circumstances: never in public, never at another relative’s house. That list included my cousin Marilyn, my little sister Amanda, my parents, my maternal grandparents and my sole maternal uncle.
They knew I was a funny, smart and creative kid. My sister and I would create elaborate storylines with our dolls and stuffed animals, all documented on the family camcorder. And at my abuelos’ house on Central Park Avenue, I’d yap with my Ñaña every day after school like I was one of the neighborhood ladies gossiping over café con leche.
My abuelos, who were both from Lares, Puerto Rico, probably never understood what it meant for me to have an anxiety disorder. So when I’d shut down around our extended family, they were left confused and frustrated.
By the time I was in second grade, most of my classmates avoided me. I was the girl “who can’t talk,” and people gossiped about me as if I couldn’t hear them.
I found comfort in reading and books, writing and creating art. They were all things that helped me express myself, manage my anxiety and lay the path to my current job as an arts and culture reporter.
Then, in high school, I created a Facebook page to raise awareness and build a community of parents, educators, mental health professionals and young people with selective mutism. I began posting videos on YouTube, too.
Though I was diagnosed early, my parents and I struggled to find a successful therapy plan and support system at school. I created the videos for my family, classmates and teachers — but those videos ended up reaching thousands more.
Even so, the disorder is still incredibly misunderstood, often mistaken for autism or simple defiance. I will never forget my family members trying to bribe me with food and toys. Tyler said the people around her tried similar tactics. But neither of us ever gave in, and in my case, there were a few times when I wet myself because I couldn’t ask to use the bathroom, or when I’d sob for hours because I delayed telling an adult I’d been physically harmed by classmates.
What kid would choose any of that?
But Tyler, Sue Cochrane, and I are proof that people with selective mutism are extremely intelligent and can become highly successful.
De Jesus tells me that she and Chris Castino, script co-writer and a former teacher, hope to bring the film to even more classrooms and theaters across the U.S. and eventually abroad. They most recently screened it for students studying psychology or related fields at Saint Xavier University and Waubonsee Community College.
I’ve attended some of those screenings and answered questions from the students afterward. Looking back, it’s crazy to think of all that I’ve accomplished since the film first got underway. It’s way more than I ever thought — and was told — I could. I wonder what my 14-year-old self would think of me now.