Giving a Voice to Unspoken Narratives

“I live in a world that is different from others,” one exhibit from Participant Eight reads, accompanied by a photo of their shadow on a white, empty wall. “It is lonely and frightening more often than I would like to admit.”

This is just one example of the perspectives shared by eight anonymous neurodivergent individuals who entrusted their narratives to Dr. Elsie Pollari and her graduate students, Sydney Boland, Elizabeth Buchanan, Olivia Frail, Margaret Manthey, and Abigail Veith in the Master’s of Occupational Therapy program through their photo voice research study.

The exhibit tied to this study, ‘Unspoken Narratives: Neurodivergent Voices Captured Through Photos,’ has been on display in the lower level of the A.C. Buehler Library during the month of April for Autism Awareness Month, and aims to help others understand the difficulties and complications that neurodivergent people experience in their communication, relationships, and self-expression.

Pollari says the idea for the project originated from the perceived gap in care for neurodivergent adults within the field of Occupational Therapy, telling the story of a client who, at 22, couldn’t find care from adult or pediatric clinics.

“It broke my heart that he was struggling so much, that no one would help him. And even though it falls within our scope of practice, I feel like our profession let him down,” Pollari explained, “This has changed the trajectory of my inspiration to help neurodivergent adults be seen and understood and get the help they need.”

Pollari’s occupational therapy graduate students, who worked on the research project and the exhibit tied to it, further elaborated on their personal connections to the project and why they felt as though this was a crucial exhibit to have highlighted for the campus community.

“I did a very similar topic to what we’re doing now, describing college students’ perception of autistic peers, and I was a little disappointed, I didn’t feel like my research project was making an impact,” said Buchanan. “And so I was really excited when this came up as an opportunity in grad school as one of the research groups that we could be a part of. And I had no idea that it would take the turn that it has now creatively, working with these individuals directly and getting to work with an OT who works with this population was really cool.”

Throughout the process, the group has worked with Dr. Sarah Norris, owner of The Sensory Coach, who provides occupational therapy services to neurodivergent teens and adults throughout the community. The collaboration has given these students hands-on experience in their chosen field of study, something the students say has been the highlight of the entire process.

Pollari notes that this work has been fulfilling, but that it’s also been a learning experience.

“It really made me face my own biases,” Pollari explained, highlighting the scheduling difficulties behind the work. “We just sort of assumed the participants didn’t necessarily work, or you know, they’re available at any time. We had 18 people express interest, but we were only able to get eight, because there were lots of work conflicts and family conflicts. I think when we’re in the mindset of, you know, we’re the ones here to help you, we’re so used to having them come to us to meet us on our schedule. It was eye-opening to be faced with the fact that, no, I need to work to increase the accessibility.”

Manthey recounted an interaction she had with a student during one of the opening days of their exhibit, emphasizing the profound learning experience it’s been for everyone. “He was down there for probably at least an hour reading every single caption, really soaking it all in and reporting back to us that someone very close to him in his life is autistic. And he was like, this really broadens my understanding of her. This really changed my perspective.”

“It’s important to get as many voices out there as you can,” emphasized Buchanan, “Just because you met with one person who’s neurodivergent doesn’t mean that you understand what being neurodivergent is.”

Getting those voices out there is exactly what this group did. They explained that through the survey responses collected by viewers of the exhibit, they hope to ascertain if this photojournal exhibit has a profound impact on people’s perceptions of neurodivergent adults–something they worked with on a larger scale after presenting at a conference for the Illinois Occupational Therapy Association.

“The more that we can educate people about these experiences that these people have, that takes some of that burden away from the neurodivergent population,” said Veith.

Boland agreed, voicing hopes that this would be the first step towards making concrete changes to help these individuals, “Making some of these adaptations the norm would be really beneficial because we all know it can be exhausting always having to advocate for yourself.”

As the month of April draws to an end, the group agrees that they owe a lot to the Elmhurst community for helping to get this exhibit off the ground, with special mention given to Ann Quinn Kelly from the Art Department and Carolyn Ciesela, Director of the A.C. Buehler Library.

“You can just tell that Elmhurst is such a community-based university,” emphasized Frail, “All of the support from everyone around campus has been really impactful, and it opened my eyes to how close-knit the community is.”

This exhibit will be on display until May 1 in the lower level of the A.C. Buehler Library, where the team will be accepting survey responses both digitally and on paper to further their research.