NIU senior Sarah Wilkinson is visually impaired, but it hasn’t stopped her from developing a plan to help others enjoy what was her first love—the visual arts.
The 24-year-old major in Nonprofit and NGO Studies uses a guide dog to navigate around campus and beyond. As a child, Wilkinson says, she was diagnosed with a rare genetic disorder called Von Hippel-Lindau syndrome, which causes benign tumors to grow in the abdomen, spine, brain and eyes.
“Tumors develop in those certain areas,” she says. “They grow at a really slow rate but once they reach a certain size they can cause damage. I lost my left eye when I was 8 years old. Another tumor was growing on the retina in my other eye. But I was able to drive and do everything until my 21st birthday. Then everything began to get blurry, and we discovered the tumor had begun to detach the retina.”
Growing up in Sandwich, not far from DeKalb, Wilkinson’s favorite activities were drawing and painting. When she enrolled at Eastern Illinois University in Charleston, her coursework centered in art and art history. She dreamed of becoming a museum curator.
Then, in her senior year, “I went to the eye doctor over Christmas break and never went back to EIU,” she says. Her eyesight continually worsened, and she now can see little except light and dark.
The next two years were spent learning to live with that new reality. In 2016, she journeyed to a training school in Michigan and learned to work with her new life companion, a golden retriever named Sierra that had been trained to work with people who are visually impaired.
Now independent enough to resume her studies, she enrolled at NIU.
Julie Ann O’Connell, outreach coordinator at the Center for Nonprofit and NGO Studies, was among Wilkinson’s first instructors. She says the NIU Disability Resource Center worked with her and Wilkinson to provide appropriate accommodations for the course. When O’Connell displayed a PowerPoint, for example, Wilkinson could sit at her desk with an earbud plugged into a screen reader, describing what the slides show, while the other ear listened directly to the lecture.
Wilkinson wanted to take her education up a notch by serving an internship. O’Connell suggested she apply for the paid DCNP/NNGO Internship, a collaboration between the DeKalb County Nonprofit Partnership (DCNP)—a program of the DeKalb County Community Foundation, NIU Career Services, and the Center for Nonprofit and NGO Studies. The program is funded by a generous grant from the Douglas C. and Lynn M. Roberts Family Foundation.
Fortunately, the Kishwaukee Special Recreation Association (KSRA), which provides a variety of services for children and adults with disabilities, had applied to be an internship host site and was excited to work with Wilkinson. As fate would have it, KSRA needed assistance with its visual arts programs
“It seemed like a perfect fit for Sarah’s talents and experience,” O’Connell says. “She had been an art major. But it’s also really hard to paint when you can’t see. Could this work?”
Julie Eggleston, executive director of the special recreation association, was unfazed.
“What we do is provide community-based therapy programs for people with disabilities,” she says. “And after interviewing Sarah for the internship position, how could we not love her? She has such a great personality and has some experience in creating art curriculum.”
Eggleston put Wilkinson to work writing up a curriculum to teach KSRA participants—most of them are people with intellectual disabilities—how to create art projects. Wilkinson was able to do most of the work at her home, Sierra at her side, communicating with the special recreation association HQ via email and biweekly progress meetings.
Eggleston was thrilled by the result. She says the new curriculum is already being used for weekly art classes offered by the KSRA at the Sandwich Park District facility—located, by coincidence, in Wilkinson’s hometown of Sandwich.
“Participating in the DCNP/NNGO Internship last semester was an awesome opportunity to see what differences I am capable of making,” says Wilkinson, who will graduate this May.
She says she hasn’t given up on that dream of working for a museum.
“Losing my vision was like losing a friend or family member,” Wilkinson says. “I didn’t choose to go blind, but I have control over how I let this situation affect my life.”
She says the nonprofit and NGO studies major has helped her confirm that belief.
“I want to make a difference in the world, and I feel like that is more possible because of this program,” Wilkinson says. “Life may have taken away my eyes, but it has also given me a voice.”