By Diane Bracuk
(In)visible— An (in) sider’s look at living with visible disabilities by award-winning Ukrainian author Ivan Baidak.
A year ago, many people would have been hard pressed to find Ukraine on a map. Now with the Russian invasion, the country and its people have become highly visible to the world, with many Western publishing houses announcing plans to produce work from Ukraine. One is Canadian publisher Guernica Editions’ translation and North American release of Ivan Baidak’s (In)visible, which was named Best Book of 2020 by PEN Ukraine.
(In)visible is shaped on 32-year-old Baidak’s experience of having Tourette’s syndrome. In the book, a freelance designer with Tourette’s finds variously challenged friends at a local support group. Anna is a charity worker with a face hemangioma. Marta is a TV anchor with alopecia. And Eva is a makeup artist with vitiligo. By sharing their struggles, they learn to move from self-inflicted invisibility to visibility.
After Russia invaded his country, Baidak was hosted by cultural residences in France and Slovenia. He plans to make his new home in Edmonton in early October. We spoke over a video call from Slovenia.
Let’s start with the question of identity. The famous British neurologist Oliver Sacks wrote that some people with Tourette’s were “scarcely able to achieve real identity amid the tremendous pressure and chaos of Tourettic impulses.” How is having Tourette’s affected your identity?
Having Tourette’s hasn’t affected me as an author or writer, but it did affect my personality growing up. My Tourette’s began when I was 12 years old. While it is considered a children’s or adolescent’s disease, I didn’t outgrow mine. I didn’t feel any pressure when I was a kid because I grew up in a small town where everyone knew everyone, but that changed when I was 16 and moved to a new city to study. Random people would mimic my tics. Professors would ask me to leave the class when my symptoms were acting up. Getting a job was hard. At this point, from the ages of 16 to 26, I felt that Tourette’s was ruining my life, and that I was always going to have to fight it.
How did you finally make peace with your condition?
I moved to the United States, New York and San Francisco, when I was 26. Having grown up with western influences—books, movies and magazines—I had this idea that the U.S. was a place filled with people who were tolerant about differences, and I was right. Living in the U.S. made me realize that everyone is unique. Everyone has issues, but they don’t need to constrain who you are and what you want to become. Maybe it was the people or my belief that things would change when I got there, but when I moved back to Ukraine, my symptoms weren’t as visible. In fact, for three years, few people knew I had Tourette’s.
What kinds of things trigger your symptoms?
Any intense emotion, either happy or sad, can trigger symptoms. Obviously, the news about the Russian invasion was bad. But the happy news—that my book was being published in Canada—also affected me the same way with an increase in my symptoms.
The characters in your book suffering other facial conditions—such as hemangioma, a benign, non-cancerous growth on the face—feel so real, with their hurt, pain and even black humour coming across so viscerally on the page. How did you research your novel?
I interviewed around 20 people with various conditions that visibly affected their appearance. Although their conditions were all different, they almost always had to endure insults and questions about the way they looked. For many, it was easier to become reclusive and go unnoticed than to explain their condition to someone. That said, everyone has their internal conflicts and defects that they’d like to correct, so (In)visible is a book for everyone and about everyone.
Going back to the question of identity, in this case national identity. Ukraine has historically been seen as a victim nation, dominated by its bully neighbour. By scoring victories with its much smaller military, Ukrainian people are now being viewed as brave and heroic. What are your thoughts on this?
The victim mentality may have been the case in the past, but it’s changed now. There’s a difference in perception about Russia between my generation born in the 90s after the fall of the Soviet Union and the previous generation who grew up under Russian rule. The prior generation believes in this misconception of a big and powerful Russia. People of my generation and younger who grew up with western influences know that Russia’s estimation of its greatness is fake.
How can Canadians help Ukraine?
They can help in many ways. from donating to legitimate charities to helping displaced Ukrainians with housing or jobs when they immigrate to Canada. A portion of the proceeds of (In)visible will be donated to support HELP HEROS OF UKRAINE, a Chicago charitable organization which will establish food banks and food distribution centers, access to medical care, clothing and education for those displaced by this war.
You can order (In)visible at Amazon, Indigo or shop local.
Diane Bracuk is a Toronto writer of Ukrainian descent whose short story collection Middle-Aged Boys & Girls, was published by Guernica Editions in 2016. She has a (very) short story published in This Will Only Take a Minute, a new Flash Fiction Anthology by Guernica Editions.