Body
When Jacqueline Kish, PhD, OTR/L, was working as an occupational therapist in an outpatient clinic at a Chicago hospital, she wondered why so many of her patients were showing up late for their appointments or not showing up at all. “We literally had a bus stop outside the door,” says Kish, a research scientist in the Center for Rehabilitation Outcomes Research (CROR). “I thought ‘Is there some stigma with using public transit or are there challenges involved that is making it too hard?’”
Kish decided to make the public transit system a focus of her research when she embarked on doctoral research, which led to her receiving her PhD in disability studies in 2022 from the University of Illinois Chicago. She decided to ride along with people with diverse disabilities as they navigated Chicago’s public transit system. Kish also asked her participants to take photos of the things that were affecting them. It wasn’t just the physical environment that was proving challenging, she learned, but also the attitudes of the people who worked for the transit system as well as the demeanor of fellow passengers. “Accessibility isn’t just about whether a ramp or elevator is there. It’s also about what happens when a person tries to use it, like how transit staff respond, how other passengers react,” says Kish. “Those things determine whether someone with a disability can make the trip safely and confidently.”
More recently, she realized that there are even more potential barriers to taking public transit for people with the communication disorder known as aphasia. Aphasia, a disability that often arises after stroke or traumatic brain injury, interferes with a person’s ability to speak or understand what someone else is saying. Sometimes people with aphasia don’t appear to others to have a disability, so transit operators or other travelers may be less patient or sympathetic when communication issues or misunderstandings arise.
“When we think of people with disabilities and transportation accessibility, we first think about visible disabilities like someone who uses a wheelchair, for example.” Kish says. “But there hasn’t been a lot of research about people with communication disorders in transportation accessibility research. I wanted to change that.”
To better understand what people with aphasia deal with when getting around, Kish applied for a Catalyst Grant from Shirley Ryan AbilityLab. The grants are available to employees of the hospital and are intended to foster collaboration between research scientists like Kish and the hospital’s clinicians and therapists. They are also intended to support knowledge transfer so that research findings can be incorporated into clinical care for patients as quickly as possible.
Kish recruited Carmela Roemer, MS, a speech pathologist, and Juliana Valentin Contreras, DPT, a physical therapist, to be part of her proposal. Contreras has gone through the hospital’s Communication Champions program to learn how to work more effectively with people with aphasia. Kish also brought onboard Leora Cherney, PhD, scientific chair of Shirley Ryan AbilityLab’s Think + Speak Lab as a content advisor.
Kish’s study will use photovoice, a qualitative research method that combines photos and descriptions generated by study participants to tell their stories. Participants will document with photos the barriers or supports they encountered while getting somewhere by either public transit or another means. “They may also rely on a family member to drive them or they may drive themselves. I want to know how they are getting to appointments in general and the challenges or supports they encounter,” Kish says.
The $15,000 Catalyst Grant is expected to generate preliminary information that can help secure funding for larger future studies.
Kish plans to recruit four to six study participants from the hospital’s Streeterville DayRehab Center in Chicago. They will be trained on using photographic equipment, how to take photos safely and the goals of the photovoice project. Participants also will be encouraged to think about what they might want to photograph before they head out the door. “Part of what we’re trying to figure out is how to do this kind of research well. What prompts do we need to give participants? How are they going to safely document something they encounter?” Kish says. “We’re not asking people to take photos of a full journey but shots of things that help or hinder them while traveling.”
One thing she isn’t worried about is finding enough people to participate. “We may have a lot more people that want to contribute than we have slots. Our transportation research tends to attract many people who are very interested in the topic of accessible transportation. They want to share their stories and sometimes they are terrible stories about being injured or having their wheelchairs broken,” Kish says. “But I also expect we will have people who will say, ‘This is the challenge and this is how I navigate it. I’ve hacked the system. I know how to do it.’”
Participants will take photos over a three- to four-week period in the fall of 2026. Afterwards, they will be interviewed by researchers about why they took those specific photos and what obstacles or supports they represent. “It could be a photo collage that tells a story. Or it could be a static photo of a bus ramp,” says Kish. “The story might be about how they had to make a request to get the ramp lowered. It’s a way to ground the communication and offer a way to express their experiences without relying entirely on language.”
The overall goal of the project is broader than helping people with aphasia navigate transit. Based on the findings, perhaps speech language pathologists can provide more specific transportation-related coaching for clients. Maybe bus drivers and train conductors can receive training on how to communicate more effectively with people dealing with aphasia. “There may also be implications for care partners,” Kish says. “I hope what we discover will be useful in many different ways.”