Nursing course brings invisible disabilities into focus

Nursing course brings invisible disabilities into focus

Navigating the health care structure of the United States can be a challenge, with long wait times and insurance hurdles that need to be cleared - all while trying to stay healthy or recover from an illness.

But what if the patient is in a wheelchair? Or needs extra time to process information or communicate their needs? Or what if they have a disease or disability that isn't obvious? How can they get the health care team to understand the added burden of carrying that weight?

Dr. Karen Saxer, an East Carolina University clinical assistant professor of nursing, is using her community health course to get at the root of the problem. She is putting her students in direct contact with a range of patients with sometimes hidden conditions, along with their family and friends, who have learned to advocate for themselves and others to receive the care they deserve.

Meeting an Unseen Need

The community health course that Saxer teaches with clinical instructor Alexis Spence is intensive, a six-credit-hour course taught over seven weeks. It's a blistering pace for most students; Saxer said she tries to pack every second with information and experiences that they can use in clinical rotations and on their first day on the job.

"I was trying to brainstorm activities that could meet more than one of our objectives and landed on the idea of a disability panel. It spoke to the importance of understanding barriers for some of the vulnerable populations in our communities as well as understanding the role that people with lived experience could play in a community assessment," Saxer said.

Saxer reached out to a few people she knew on campus who might be willing to discuss their disabilities - both the obvious and the less noticeable. Among those were Soph Myers-Kelley, a library assistant professor at Laupus Library on the Health Sciences Campus, and Greg Hare, who Saxer said has been the backbone of the ongoing panel series.

Hare is paraplegic and tells students that his wheelchair is simply his mode of transportation - it does not define who he is. He shares his experiences with discrimination, poorly designed community services and barriers to care with grace.

The Panel as a Teaching Tool

The panel, Saxer believes, is an efficient way to put students in direct contact with people with disabilities and their family members. During each seven-week course, her students meet for several hours with volunteer panel members and then reflect on the experience as part of their coursework.

"It's not only the specific barriers that this population faces, like inaccessible doors or ramps that don't work. You can't always tell by looking at a person that they need a handicapped parking spot, that sort of thing" Saxer said.

Saxer said an added benefit of bringing student nurses together with community members with disabilities is understanding the role of advocacy. Getting students to see disabled patients as whole people who have special barriers, but also strengths, is critical, she said.

"A lot of the students remark in their written reflections that they are people, that we have a shared humanity. They just happen to have a disability," Saxer said.

As important as having students interact with disabled patients is learning from family members, who have a key role in advocating for those with special needs in a health care setting.

Saxer said that during nursing school she attended a panel that included people with mental health conditions and their families, and it showed her how hearing personal stories can build empathy, challenge assumptions, and help students understand the real-world strengths and challenges people navigate.

"When I was a student, hearing directly from people themselves changed how I saw my role as a nurse," Saxer said.

Megan Wetz is from Hickory but is making Greenville home after taking a job at ECU Health Medical Center. She was recently a student in Saxer's class and said getting firsthand experience with people with disabilities has changed the way she is approaching her new profession.

Attending the panel wasn't just about learning - it was also a validation of her experience working with autoimmune disease.

"It was awesome for our class to get to see my experiences," Wetz said. "I haven't really advocated for myself and just kind of dealt with it. This semester I reached out to Disability Support Services and got some support."

Wetz said the biggest lesson she's learned, from being a patient and now a nurse, is to listen to the person being cared for.

"It's easy to just go in the room and do the things you need to do because you have four other patients in the pod that you have to take care of, but taking the time to listen and understand that it's deeper than what's at the surface," Wetz said. "The patient knows their body more than we do; they know their health more than we do. Take the time to fully listen to their story, get their background and the full picture."

Adjunct Teachers

Soph Myers-Kelley is a library assistant professor at Laupus Library on ECU's Health Sciences Campus. For the past few years, he's participated in Saxer's panels with nursing students, sharing his experiences as a patient navigating the connective tissue disorder Ehlers-Danlos syndrome and neurodivergence.

"And sometimes I can throw in experiences of being queer and transgender," Myers-Kelley added.

Myers-Kelley said students ask meaningful questions like how much a person's disability plays in their sense of identity. It's often hard for people to see those with disabilities as separate from their supposed limitations, so having opportunities to dispel misconceptions and show the humanity of all patients is important.

"These panels help to drive home how people, unfortunately, have gotten below standard care or their protected health information has been violated," Myers-Kelley said. "The students ask interesting questions about discrimination, our day-to-day lives and what we would like to see differently in their profession."

Saxer often relates some of the insights shared with her students with the panel members, which is validating, Myers-Kelley said. But even more impactful is having nursing students approach him after the panel has ended to privately share their own less-than-obvious physical or mental challenges.

"That's huge because so many so many nursing peers don't realize that their colleagues have invisible disabilities as well," Myers-Kelley said.

John Acord is a library technician at Laupus Library and co-manages the university's collection of anatomical models. He was invited to be part of the panel almost by chance - several years ago a panelist couldn't make it, and he was asked to step in.

Acord grew up in the '80s and '90s, when diagnoses for autism and obsessive-compulsive disorder were rare, much less understanding and treatment.

"I used to be very cautious about it. I was embarrassed. You think something's wrong with you," Acord said. "Perceptions have changed over time, and it's great to have people be compassionate to me now, but that wasn't always the case."

Acord said he sees many of the students from the panels in the library and gets a good reception from them.

"They get to know me on an intimate level, and I believe it breaks down a lot of boundaries. I'd like to think I'm approachable anyway, but I think it always just helps them to be able to approach me outside of the library setting," Acord said.

Impacting Students

Kelly Adams was invited to be part of Saxer's panels because she brings the perspective of a family member. She hasn't had to square up daily to unseen medical challenges herself, but she's never known a day where her sister didn't have to navigate life in a wheelchair.

Adams, who is from Washington, is part of long line of Pirates. She graduated recently with a degree in business administration and is back at ECU to graduate with an MBA in May.

Adams' sister has the genetic disorder spinal muscular atrophy, which essentially means she has trouble building muscle. She can talk and breathe, but moving her limbs is a challenge, hence the need for a wheelchair.

"I was a year and a half old when she was born and probably two when she was diagnosed," Adams said. "I don't know anything different. It's never made me feel like I'm missing out on anything because this is the only life I know."

When she was an undergrad, one of Adams' roommates was a nursing student who had participated in one of Saxer's panels. Her experiences were a perfect fit because she is a stakeholder in a disabled person's health care, so she connected Adams and Saxer.

"My freshman-year roommate knew that my sister was disabled, and my friends would ask me, 'Is it a touchy subject? What's going on with her?' I always told them I'm more than happy to tell you anything you want to know," Adams said.

Adams said it's meaningful to speak with nursing students because she has been to so many of her sister's medical appointments where they had to improvise simple things like getting her weight.

"If they don't have a scale for her, my mom has to pick her up and then subtract my mom's weight," Adams said. "I like to see their reactions when I tell them what really happens."

Adams has friends who are nurses and she reminds them to not get into a rut of thinking that challenges their patients face are obvious. During an appointment with her sister a few years ago the doctor her sister asked if she got dizzy when she stood up from her power wheelchair.

"We told him that doesn't happen; she can't walk. He told us he didn't know what SMA was and then googled it in front of us," which Adams said didn't bother her as much as it showed the limits that health care providers can have with their patients.

Adams never considered a direct role in health care - "I get nauseous at the sight of blood" - but she has always felt the pull to help people understand the challenges that her sister, and others like her, face just living their lives. There aren't a lot of younger people in wheelchairs, Adams said, but it's not that uncommon. She watched from the sidelines as her sister and other kids in wheelchairs played matches in their soccer league.

"This panel has been my way of helping without being a doctor or a nurse. I can show people that it's normal, there's no reason to stare," Adams said. "And if you want to ask questions, ask questions. If she doesn't want to answer them, I will."

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