No Research About Us Without Us

Scholars and educators conduct research that impacts students with disabilities. But do students with disabilities have an impact on the research?

Not nearly enough. Data suggests that students with disabilities are underrepresented in college research experiences, and they are often missing as contributing knowledge producers and from research opportunities. To ensure research in technology, medicine and education that is relevant and meaningful for people with disabilities, it is especially important to include their voices in the research design process as contributing researchers, not just study participants. Involving disabled students in research early and often brings a new and unique perspective to addressing problems and answering questions. Research has also demonstrated—and scholars have recommended—that increasing inclusion of people with disabilities in workplace settings enhances innovation and creative problem-solving for everyone.

Young people with disabilities increasingly matriculate into higher education, with about 20 percent of undergraduates in the U.S. reporting a disability to their college. Students’ participation in research is an important predictor of persistence in higher education, as it enriches their overall college experience and validates the importance and relevance of what they are learning. Yet many institutional and social barriers hinder the inclusion of students with disabilities in research and in subsequent opportunities in the scientific workforce.

As scholars and students working in inclusive research labs across three university campuses—the Mathematics Potential Lab at the University of Missouri at Columbia, the Career Analysts research lab at Portland State University and the CHROME (Collaborative Haptics, Robotics and Mechatronics) Lab at Saint Louis University—we offer experiences and recommendations below for reducing barriers to disabled student participation in research labs through impactful, intentionally inclusive practices.

How to Involve Disabled Students in Your Research Lab

While it seems obvious that research that is specifically about disability should involve disabled researchers, a diverse group of researchers is important for any research project so that the outputs and products are relevant and meaningful to all members of our diverse population. Below is an actionable list of advice for faculty to recruit disabled students and to create accessible and inclusive research experiences that support their students’ success. These tips are relevant for research in any field.

1. Intentional invitations: Be intentional in inviting students with disabilities to get involved in your lab by, for example, collaborating with the campus disability center to promote open lab positions.
2. Interview ingenuity: Acknowledge that difficulty interviewing does not reflect a student’s work ethic or academic efficacy. Consider alternatives to the typical interview format (e.g., provide interview questions in advance or publish them in the chat during an online interview to reduce participant anxiety, review past work or portfolios, offer a trial opportunity to participate in the lab, accept faculty references or recommendations, or set up a scenario-based activity to observe performance).
3. Accessibility and accommodations: Familiarize yourself with accessibility options and provide accommodations as needed (e.g., in-person or Zoom participation, multiple lighting and seating options, individual opportunities to personalize spaces, accessible text formatting). See Barbara Sandland et al. for further suggestions. Universally designing a supportive and collaborative culture within the lab are critical to an inclusive lab experience.
4. Rapport and relationships: Ask preferences (e.g., person-first or identity-first language), empower disclosure and self-advocacy, and make time to ask students about their preferences regarding how they do their best work.
5. Prioritize participation: Learn more about inclusion and disability before, during and after you decide to recruit students with disabilities. Create an inclusive environment and implement inclusive practices such as alternative communication modalities and seating options. Set up routines that provide all students in your labs equal opportunities to participate and express themselves. Ensure that students with disabilities are welcomed as equal contributors to the research being conducted and given autonomy to complete tasks and participate to their level of comfort. The Association of College and University Educators offers additional inclusive teaching practices in higher education.
6. Normalize neurodiversity/disability diversity: Use a universal design lens when generating the lab structure, activities, environment, etc. Involve your students with disabilities to the same extent that you involve other students. Think empathetically rather than sympathetically (i.e., employ a disability-pride lens rather than a deficit lens) and recognize research contributions by everyone through a lens of equity rather than equality. For example, not everyone in your lab (equally) will need access to text-to-voice assistive technology to enable their active participation in activities like literature reviews. However, students with vision impairment or light sensitivity may need that service to enable them to participate equitably. In other words, the assistive technology would level the playing field between disabled and nondisabled researchers for activities that take many hours of screen time. Voice-to-text tools might be preferable for everyone but are only necessary for specific individuals to be able to get the job done. Access to accommodations is not a reflection of fairness as through an equality lens; rather it is a reflection of necessity for some through an equity lens of engagement.

For more inspiration, Miriam Zaagsma and colleagues published a great article describing lessons learned from a research collaboration involving a co-researcher with an intellectual disability. And for more information on representation and including voices of disabled groups check out the Autistic Self-Advocacy Network, who embody the phrase “Nothing about us without us,” inspirational for this article.

Students’ Perspectives

For disabled students, participation in research labs may seem like a nonoption without role models or examples of others like themselves who have been involved in research labs before. Taylor, an undergraduate lab participant—and co-author of this article—explained it this way: “As a woman in STEM, a lot of the labs in STEM are very tedious. Yesterday, I thought I was going to explode because I had an academic lab [for a college-level course] … I just didn’t really feel like there was a lot of space for me accommodation-wise, and I didn’t really feel like the motivators that would make me perform well were there.” Taylor’s experience felt overwhelming and lacking in educational opportunities in her area of interest.

Szymon, another co-author and undergraduate lab participant, explained that he had not been involved in STEM research before, despite having an interest, because it was hard to find opportunities that did not require prior research experience. “And if you don’t have experience,” Szymon said, “then it’s really difficult to get started doing anything valuable. It’s like, I could work in a lab sweeping floors but that’s not, you know, that’s not what I want to be doing.”

Misrepresentation or misconceptions about research also created a barrier to participation, as another co-author and lab participant, Emma, explained: “For me, it was definitely very, very scary starting out, because all that I had heard people talk about research is that it was super high pressure. Lots of deadlines, lots of work to do. And I already, like, struggle, especially academically.”

When asked how they found out about and got involved in a research lab on campus, the common denominator was an invitation. Each student reported finding out about the opportunity through an invitation either from a trusted friend or faculty member or a recruitment email that came from the campus disability center. Without a clear history of inclusion in research labs, students with disabilities may not realize research opportunities exist to pursue on their own.

The students unanimously cited the deliberate efforts of the Mathematics Potential Lab at the University of Missouri to recruit students with disabilities as the impetus for them to give a position in the lab a try. The fact that the lab adviser (and co-author of this piece), Jessica Rodrigues, “wanted to hire from the disability sector” and was “actively looking for students with disabilities” gave Emma “the impression that J. Rod, as she is affectionately known, and this entire team would be accommodating … knowing that there might be more accommodation and understanding for, I guess my situation, was definitely something that made me feel a lot better about entering the research world.”

Taylor also confirmed, “Yeah, that was the selling point … I also felt like I was actually bringing something to the table insight-wise.” Co-author Kate also said, “You don’t see a lot of individuals with disabilities or even talking about disabilities in the higher education community, so I was interested in the lab and reached out.”

These student comments reinforce the importance of casting a wide net for recruitment across venues and formats on campus, including the disability office, campus social activism events, research spaces and diversity, equity and inclusion spaces and activities. Emails, posters, outreach initiatives, going to talk to freshman classes and sending information to advisers to recommend their students were just a few of the creative suggestions shared by our co-authors. Be clear in recruitment materials that the lab is not seeking disabled research subjects but instead is seeking actively involved researchers with disabilities. Finally, co-authors expressed that no one really wants to use their disability as an avenue to be included, so promote the real intention behind recruiting students with disabilities and creating an accommodating environment: to seek diverse perspectives and lived experiences to build a robust and creative research team.