By Caitlin Seida from In The Cloud Copy
If you asked Sarah Baldwin, age 19 and a sophomore at Syracuse University, about the success of the comic book she helped create, she’d tell you “I never in a million years expected it to be published.” But the comic, co-created with teens Mary Gregorian of Smithtown, New York and Julie Nemerson of Northbrook, Illinois, did more than get published; it’s a hit, and one that is bringing awareness of Tourette syndrome to kids, teens and adults alike.
The Creation of “Twitcha”
The premise of “Twitcha” is a teen girl living with Tourette syndrome who uses the hereditary neurological disorder’s characteristic vocal tics and involuntary movements as her superpowers. Created by the ladies during a leadership academy held by The New Jersey Center for Tourette Syndrome and Associated Disorders, the girls largely modeled the main character after themselves and, according to Sarah, it is something they would have liked when they were younger.
“It’s something…I would have liked to have had when I was first diagnosed,” she says. “You think ‘oh, this is the end of the world, this is the worst. I don’t know what I’m going to do.’ ” This is the feeling that she and the other girls tapped into when they created “Twitcha.”
Living with Tourette Syndrome
The disorder, which affects close to 200,000 people in the United States alone but may be common as 1 in 100 in some form or another, expresses itself through behavioral symptoms such as uncontrollable, repetitive movements or sounds (called tics).
Sarah, like many teens, struggled with self-confidence and the ability to advocate for herself. “When you’re making these movements and noises and stuff, it’s a lot of attention that gets drawn to you,” she shares. “My biggest thing is that people would say that I was doing it for attention, so that was kind of hard. I was like, ‘I’m really, really not. It’s kind of the opposite. I really don’t want this.’ ”
That feeling almost certainly contributed to her drive to create a comic book where the main character’s tics are her superpowers.
“Self-advocacy… is something you have to do most days of your life,” says Sarah. “I’ve learned not to get mad at people when they see me and… react negatively… because it’s kind of human nature. You don’t know what it is, and you don’t know what’s going on, so you’re going to share.” Sarah is a big believer in the power of humor and normalizing the disorder. She wants those around her to be as comfortable with Tourette’s as she is. “It’s just my life, just this thing that I have.”
Raising Awareness
Sarah hopes the comic will empower others to do the same and bring awareness to what it’s like living with Tourette syndrome. “If [people] ask me questions, I’m so excited to answer them,” she says. “If you don’t understand it, just accept it and support your friends with it and feel free to ask questions.”
It’s her hope that the comic will help kids escape the treatment she got at the hands of her peers in elementary or middle school. Because her classmates didn’t comprehend it, know what it was, or even want to talk about it, they treated it as a frightening, potentially communicable disease. “It’s just part of someone’s life,” she remarks, standing as a reminder that people are not their disorders — they are so much more.
To read more on the comic or purchase a copy, visit Twitcha’s official web page on the NJ Center for Tourette Syndrome’s site. Teachers and libraries can also obtain copies free of charge, along with lesson plans.
Check out the original story here.
