No Research About Us Without Us

This photo is a picture of ten research team members and one pet dog sitting on campus steps.

In May 2023 at Binghamton University, State University of New York, a team of ten researchers from various academic perspectives worked together on the publication No research about us without us: A quantitative critical investigation of supportive environment scores for disabled students (Ottens et al., 2025). This year, the work was published in the Journal of Postsecondary Education and Disability, the research journal for the Association on Higher Education and Disability. Using data from the National Survey of Student Engagement (NSSE), the results of the study indicated that regardless of disability type, students reported statistically significantly lower Supportive Environment scores compared with the general population. However, this finding is just one part of the story – what makes this research important is the inclusion of disabled scholars. Among the spanning academic appointments of the team members (i.e., 1 faculty member, 2 doctoral students, 5 masters’ students, and 2 undergraduate students), all but one are disabled.

The real success of the group resides in the use of principles from Community-Based Participatory Research (CBPR) in the development of the research team. CBPR is an approach to scholarship that treats members of the community as equals in generating knowledge, establishes trust and repour among team members intentionally, and aspires to a horizontal power structure, regardless of scholarly experience (Hacker, 2013). As part of a week-long 40-hour research experience, team members were able to disclose their disabilities and begin the scholarship process from a place of authenticity and trust. This is one example of a national movement to intentionally involve disabled students in research (Locke et al., 2025). Below are the reflections of some of the team members on this experience.

How did this research team come to be and what was the experience like?

John Zilvinskis, PhD (then, Associate Professor)

I teach in a master’s program for Higher Education and Student Affairs at Binghamton University. Our students often have time between the end of their first spring semester and the beginning of their summer internships, so I like to invite some to join the May Research Team where we work together for a couple of weeks from 9-5 to create a new publication. Also, we were able to pay students to work on this project thanks to a small grant from our university’s Institute for Justice and Well-Being. In spring 2023, we were working with the new NSSE disability items (Zilvinskis, 2021), so I began our first team meeting by asking students,

“What is your experience with disability?” To my surprise, all but one of our ten team members are disabled.

I too am disabled – I have dyslexia and dyscalculia; I also take medication for anxiety and depression (which is something I am clear about with my students and colleagues; Deguia, 2024). From there, we were able to hit the ground running building trust and relying on the perspectives of our team members to interpret the data. Watching students with disabilities learn from each other, while researching students with disabilities, was one of the most rewarding experiences of my career.

What was it like to lead the team through the publication process and how did it complement your learning in your doctoral program?

Mack Ottens, PhD (then, doctoral student Community Research and Action PhD & first author)

Leading the team through the publication process was both challenging and rewarding. Writing and revising a manuscript is demanding, especially when revisions must meet the expectations of a specific journal. With many authors no longer students or living nearby, coordinating feedback required clear and consistent communication. After identifying who was available, I delegated tasks based on each member’s strengths and set a tight timeline to prevent delays. My goal was to ensure revisions didn’t become a bottleneck and that we could share our findings promptly. This experience complemented my doctoral training in a meaningful way. In class, we learn to conduct research and write about it in a structured environment, but real-world research is far messier. Managing this process taught me skills that aren’t covered in coursework: project management, team coordination, and navigating the human side of research collaboration. It also helped the entire team gain firsthand experience with the realities of academic publishing. Bringing everyone together to revise with a cohesive voice not only improved our manuscript but also gave me leadership experience that will be invaluable in my career.

What was it like to mentor students outside of your discipline? How were you able to exercise interdisciplinary principles in this space?

Francesca Bové, MPA (then, doctoral student Community Research and Action PhD & second author)

When this manuscript was in progress, I had just completed my PhD coursework in Community Research and Action. It was my first time mentoring students on a research project; let alone students from disciplines I was unfamiliar with. Despite our different academic homes, what united us was a shared commitment to centering the experiences of disabled college students. My primary contribution was guiding our team in the use of a CBPR approach. This method challenged us to move beyond data and regression models, and instead anchor our findings in the real stories and input of disabled students. It required slowing down, building trust, and offering personal reflections. Our findings revealed that, broadly, students with disabilities do not feel as supported in their college environments as their nondisabled peers. These results, combined with our own campus experiences, made it clear that much work remains to ensure disabled students feel welcomed and supported. This message resonated with all of us, regardless of discipline. The experience and the use of CBPR showed me how powerful interdisciplinary work can be when it’s rooted in shared goals and mutual respect.

What was the dynamic of working with disabled colleagues to study disability like for you? How did this experience inform your aspirations to conduct research in the future?

Alexandra Yeager, MA (then, master’s student in Student Affairs Administration)

Utilizing a CBPR approach within a team of individuals who are also disabled was empowering. Creating a sense of community and belonging outside the walls of the research at hand, the research team members were able to freely share individual experiences, which resonated with each member during our various academic journeys. During the research process, all the team members regardless of hierarchical status of faculty member, doctoral student, etc., we were all equal members of the disabled community coming together to advance the field of disability in higher education. This experience on the research team was a pinnacle moment in my graduate school journey, where I saw the research process from start to publication and knew this would have a lasting impact within the field. Through this experience, I realized how much I enjoyed the research process which has influenced me to begin applying for doctoral programs this upcoming fall.

Guest Authors

John Zilvinskis, PhD

Associate Professor at Binghamton University

Mack Ottens, PhD

Career & Outcomes Data Analyst at Binghamton University

Francesca Bové, MPA

Research Development Associate & PhD Candidate at Binghamton University

Alexandra Yeager, MA

Coordinator, Fraternity and Sorority Life at Florida State University

References

Hacker, K. (2013). Community-based participatory research. Sage

Locke, S., Ellison, E. E., Geneux, T., Ślusarz-Kowalczyk, S., Roberts, R. K., Ellefritz, H. S., Shifrer, D., Gorlewicz, J., & Rodrigues, J. (2025, February 12). No research about us without us. Inside Higher Ed. https://www.insidehighered.com/opinion/career-advice/diversity/2025/02/12/how-include-disabled-students-research-labs-opinion

Deguia, J. (2024, April 10). Episode 2 w/Dr. John Zilvinskis [Audio podcast]. In Ambitious Fishes. https://rss.com/podcasts/ambitiousfishes/1431047/

Ottens, M., Bové, F. M., Amodeo, M. B., Cardona, C. G., Cotten, G. E., Ryan, S. M., Slavick, S. C., Taylor, C. A., Yeager, A. J., & Zilvinskis, J. (2025). No research about us without us: A quantitative critical investigation of supportive environment scores for disabled students. The Journal of Postsecondary Education and Disability, 38(1), 379–396.

Zilvinskis, J., Brown. K, & Holmes, B. (2021). The importance of outside expertise: Updating the NSSE disability items. https://nsse.indiana.edu/research/blog/2021/2021-05-06-the-importance-of-outside-expertise-updating-the-nsse-disability-items.html