Ruda Gogorushko sits in her wheelchair on the University of Oregon campus. (Kari Hansell Tenness/Ethos)
Kari Hansell Tennesse
In the world of children’s fantasy literature, anything is possible to some degree, from the Cat in the Hat to hungry caterpillars. These books often blend fantasy and reality and give non-human characters a sense of humanity, but only if they are deemed “acceptable” or “normal.” INCLUDAS Publishing, a publisher of inclusive and diverse children’s books featuring disabilities, and its founder Ruda Gogorushko are changing that narrative.
Gogorushko has spinal muscular atrophy type 3, a genetic disease that affects the nervous system and skeletal muscles. SMA is considered rare, affecting about 1 in 10,000 people, according to the Centers for Disease Control and Prevention.
“With SMA, or muscular dystrophy, your muscles weaken over time,” Gogorushko said. “One day you can brush your teeth, and then it gets harder and harder, and your muscles get weaker, and you don’t even realize it.”
Growing up, Gogorushko was confronted with a cultural medical model that viewed disabilities as defects and that these defects must be fixed in order for an individual to live a quality life. Because of this, Gogorushko spent most of his formative years in doctor’s offices under supervision that focused on his health.
About 26% of Americans, or 52 million people, live with a disability, according to the Boston Medical and Health Center. According to the Urban Institute, in 2022, 4 in 10 U.S. adults with disabilities experienced unfair treatment in a medical setting, at work, or while applying for public benefits.
Bee Baumstock
“I think a lot of my childhood education was focused on the disability aspect — what we would have today is whether or not I ate healthy, whether or not I exercised — and I think that robbed me of a lot of the real childhood I wanted,” Gogorushko says. On the playground, Gogorushko was ignored and rejected. Other kids were afraid to play with her, and sometimes even their parents would tell their kids to stay away.
“I feel like a speck of dust that no one sees or cares about,” Gogrushko said. “I feel really invisible.”
But during a childhood marked by isolation and social misunderstanding, Gogorushko found solace in TV shows featuring strong female protagonists, like “Power Rangers” and “Xena, Warrior Princess.” “Television was my childhood play, my fantasy play, my escape from all the medical aspects of my disability,” Gogorushko says.
Gogorushko’s love of storytelling continued into adulthood, when she earned a Master’s in Communications from California State University, Northridge. Driven by her passion for storytelling and outraged by the lack of and inaccurate portrayal of disabilities in literature and media, Gogorushko embarked on a journey to change the narrative.
In 2015, she founded INCLUDAS with the desire to end the stereotype that disability is a burden or something to be locked away, and with most of the story ideas coming from her childhood experiences.
“Luda and Chairsy Making Friends” is written by Luda Gogorushko and illustrated by Kevin Nordstrom. It is her first published work and features a young Gogorushko herself as the main character. (Kari Hansel Tenes/Ethos)
Kari Hansell Tennesse
According to the Cooperative Children’s Book Center, 16% of people worldwide have a disability, yet only 3.4% of books published in 2019 were written by or about people with a disability. INCLUDAS published its first book in 2019 and continues to publish one to two books each year.
“I think because I related so much to the fictional character, it made me want to see more of them in books. INCLUDAS aims to create characters who can change the world,” Gogorushko says. “As a child, I would have been happy and proud that I decided to become a warrior in a world filled with harmful portrayals of people with disabilities.”
Through stunning illustrations and colorful words, Gogorushko encourages people with disabilities to be included in media and ultimately play positive roles. “I think these stories simply send the message that it’s okay if you have a disability, you don’t have to hide it or pretend to be able-bodied in order to fit in,” says Gogorushko. Recognizing how ableism intersects with other forms of prejudice, especially racism, her book doesn’t just focus on disability.
“The Biggest Gift of Them All” by Ruda Gogorushko, illustrated by Melkea Smith, tells the story of a wheelchair-bound girl struggling to find the perfect gift for her best friend. (Kari Hansell Tenness/Ethos)
Kari Hansell Tennesse
“With this last book, I had to really think about what we don’t see: We don’t see a Black disabled girl in a wheelchair,” Gogorushko says. INCLUDAS will release “The Biggest Gift of All” in November 2023, with artwork created by Black, queer, award-winning children’s book illustrator Melkea Smith.
Set at a child’s birthday party, watercolors and pastels fill the pages with gifts. “The Greatest Gift” revolves around Tasha, a young black girl in a bright pink wheelchair who decides to give her buddy Sam a gift bigger than friendship. Dismayed as her friends bring bigger and bigger gifts, Tasha feels her gift isn’t good enough. But in the end, young readers will learn that true friendship is the greatest gift of all.
Apart from producing children’s books, the publishing company recently embarked on a new initiative to research how people view the representation of people with disabilities in the media.
Mila Coles, an undergraduate student at the University of Oregon, interned at INCLUDAS as an educational activities coordinator over the summer and stayed on to continue her research. Coles originally took the position for the publishing experience, not knowing about the agency’s focus on diversity and disability.
“Looking back, I really didn’t think anything of it, and now I feel like I was so ignorant I couldn’t ignore it,” Coles said. Every time he watches a movie or reads a book, Coles finds himself using what he learned at INCLUDAS to critically analyze the media, and he’s grateful for it.
Along with Coles, Gogorushko has been interviewing people with and without disabilities about their feelings about disability representation in the media. Recently, they’ve been talking to professors from the Center for Accessible Education, SOJC and others to further their research. Their goal is to conduct 30 interviews by the end of the spring semester, and they just finished a pilot beta test of the study.
Bee Baumstock
In addition to her work as a publisher and researcher, Gogorushko is also a graduate teaching fellow at the University of Oregon, and her advocacy for the disability community goes beyond her books: in the Winter 2024 semester, she taught a class called “Disability and Media Technologies,” which focuses on how media technologies often shape and reinforce discriminatory practices because people with disabilities are often excluded from the design process.
Through both INCLUDAS and UO, Gogorushko has been able to rewrite the narrative of not only the disability community, but also himself.
“I had to change my perspective and learn to see myself as a person, not as society sees a disability,” Gogorushko says. “Writing is like therapy for me.”