I was at the Guernica Editions launch for Ivan Baidak’s novel, (In)visible, on September 18, and was so moved by his introduction to the reading. He talked about the almost 2 million Ukrainians who live with disabilities and that the majority of them live indoors, away from the public’s gaze. They live in fear of being seen, being mocked and feel safer indoors.
As the mother of a kid with a facial difference, this was hard to hear. There have been many times in his life that I felt we shouldn’t go outside, especially when he was very young and had spots all over his face from laser surgery. But we went anyway; we went shopping at IKEA where he played with other kids in the ball area; we went to the park where kids could see him and he went to school. We did this for no other reason than he deserves to live like everyone else. I didn’t think about the other side of it until years later when my very young niece told her best friend (who was staring at her cousin’s port-wine-stained face), “Don’t worry, after a while you won’t even notice.” She was right. The more people hang out with him, the more they see he’s loving, caring, empathetic and funny as hell. The more they see him, the less they see the birthmark because he is more than his face. My kid needs to be seen; people with disabilities, both visible and invisible, need to be seen.
In the first section of Baidak’s novel, the characters, who are members of a support group for individuals with visible differences talk about their reactions to people staring and inquiring. Anna, a character with a large hemangioma on her cheek says, “I wish they didn’t notice us at all…or rather ignored us.” Eva says, “I usually joke about it. Whenever someone asks me about patches on my skin, I pretend I have no idea what they’re talking about. Patches? What Patches?” The conversation turns when the group’s facilitator says, “Don’t be hard on others. They might just need a bit more time to get used to you.” This upsets Eva, who is angry she can’t ever hope to make a good first impression and that no one will ever fall in love with her at first sight.
This is the heart of the story, for me. We live in a world where our physical bodies, our faces, our hair and how we move in the world, are judged at first sight. Unless my son decides to hide inside, the images he shares on social media will be commented on by those who will see his birthmark first, and then, hopefully notice his beauty. This world is exponentially more difficult for him and for people with visible disabilities because the first impression will always include their differences. What I like about Baidak’s novel is, his characters are allowed to speak their own experiences and share their own opinions about what they should be doing and what the general population should be doing.
This novel explores the experiences of four characters with visible differences. From Tourette’s to alopecia to a facial hemangioma and vitiligo, Adam, Marta, Anna and Eva confront their own fears and trepidations as they move toward a new place in their lives. They are each courageous and confident as they learn “patience and resilience” on their journeys of self-discovery.
In the final chapter, Adam says: “Each of us is fighting our own battle…Whenever I meet someone for the first time, I feel like I’m opening a new book. I am not familiar with this person’s story…but I know…they might be struggling with something…So, I try to be kind to them.” We need more books like (In)visible in the world. We need more people to see others as they hope to be seen. We are all struggling. We come “in many different shapes and forms” and it is only when we look beyond the book cover – beyond the faces and bodies – that we will understand each other. I cannot say enough how important it is for people with differences to live inside the books we read. At the reading, before Ivan stopped talking, my son said, “I need his book.” He wanted – he needed – a book that spoke to his own experiences. Ivan dedicated the book to Duncan with the words: “Hope you have a wonderful life.” Isn’t this what we should want for everyone?
I hope you will join us on October 2, but in the mean time, please read Ivan’s book. Find resources and follow groups and individuals on social media.
Suggestions: AboutFace Canada an excellent group for individuals and families living with facial difference. Face Equality International, an organisation of many fighting for face equality as a human rights issue. Tourette Canada, a fundraising and support organisation raising awareness. The Canadian Skin Patient Alliance, “a national non-profit organization that improves the health and wellbeing of people across Canada affected by skin, hair, and nail conditions through collaboration, advocacy, and education.”