Students with Disabilities in Life Science Undergraduate Research Experiences: Challenges and Opportunities

INTRODUCTION

Individuals with disabilities¹ are underrepresented in postsecondary science education; while they are estimated to make up about 26% of the U.S. population, individuals with disabilities comprise 18% of those who pursue an undergraduate degree in the life sciences and only about 10% of those who graduate college with a life sciences degree (National Science Foundation [NSF], 2016; Centers for Disease Control and Prevention [CDC], 2018). It is becoming increasingly clear that students with disabilities experience unique challenges in undergraduate science, including facing discrimination and enduring inaccessible classroom learning environments, which are thought to contribute to their attrition from science degree programs (Fayer et al., 2017; Zablotsky et al., 2017). However, there is a growing recognition that there are specific high-impact practices, often not part of the standard college science curriculum, that can greatly influence a student’s persistence in science. It is not well known to what extent students with disabilities participate in and thrive in high-impact practices such as undergraduate research, which are known to increase student persistence in undergraduate science programs (Nagda et al., 1998; Hathaway et al., 2002; Jones et al., 2010; Hernandez et al., 2018) and their chances of going to graduate school (Bauer and Bennett, 2003; Seymour et al., 2004; Russell et al., 2007; Carter et al., 2009; Hernandez et al., 2018). In this article, we examine the representation of students with disabilities in undergraduate research and explore the unique experiences of students with disabilities engaging in research to further understand how colleges and universities might leverage this high-impact practice to improve the persistence of students with disabilities in science.

Increasing the representation of individuals with disabilities in science has become a priority for national funding agencies (NSF, 2021). Having individuals from diverse backgrounds engaging in science is integral to national success, because it can lead to a stronger, more talented U.S. workforce that can meet the demands of a 21st-century economy (Olson and Riordan, 2012) and increase the objectivity of science by including individuals with unique perspectives that can influence scientific questioning and interpretation (Intemann, 2009). However, societal norms, attitudes, and ableist structures have contributed to the historic underrepresentation of individuals with disabilities in science (Oliver, 2013; Sins Invalid, 2019). Undergraduate courses are often taught in ways that are inaccessible to students with disabilities, and these ableist course design structures can discriminate against individuals with disabilities, often in ways that may not be apparent to an instructor (Hehir, 2002; Goodley, 2014). For example, teaching practices in science courses (e.g., asking students to work together or asking students to speak out in front of the whole class), content delivery (e.g., in-person vs. remote vs. hybrid), and course and university policies (e.g., required attendance in a course, required wet lab course for a science major) can create unique challenges for students with disabilities (Hutcheon and Wolbring, 2012; Gin et al., 2020, 2021a). As such, students with disabilities often require accommodations, defined as auxiliary aids and services, to facilitate their participation in university courses (Meeks and Jain, 2015). Even though adequate accommodations for college course work are legally mandated, students with disabilities often need to self-advocate, or actively assert their needs and rights, to secure what they need (Martin and Marshall, 1995; Test et al., 2005). The process of self-advocating has been shown to be a critical, yet challenging, part of navigating undergraduate education in general (Hadley, 2007), as well as in science-specific learning contexts (Pfeifer et al., 2020, 2021; Gin et al., 2021a). In fact, science disciplines have been reported to be particularly exclusionary for students with disabilities. For example, science majors with disabilities often receive fewer accommodations in their courses compared with non-science majors with disabilities (Lee, 2011). Additionally, one study found that college science instructors doubt the abilities of students with disabilities and also lack the knowledge and experience required to provide proper accommodations for science course work (Dunn et al., 2012). As such, it may be particularly difficult for students to self-advocate in the context of college science courses (Pfeifer et al., 2020, 2021).

Previous research has established that students with disabilities can experience challenges in navigating different science learning environments, because individuals involved in a student’s education (e.g., instructors) are unfamiliar with available resources for students with disabilities (Baker et al., 2012; Cole and Cawthon, 2015; Roth et al., 2018). For example, students with disabilities are traditionally supported by a university’s disability resource center (DRC).² DRCs are offices that provide services to students with disabilities and other diagnosed medical conditions to ensure compliance with both educational and civil rights laws that mandate that students with disabilities be reasonably accommodated (Section 504 of the Rehabilitation Act, 1973; Americans with Disabilities Act of 1990, 1990). While support services for students with disabilities are available on nearly every college and university campus (Madaus, 2011), some students are unaware of the existence of the DRC or are unsure of the types of accommodations that may be available to them through the DRC (Dowrick et al., 2005; Marshak et al., 2010; Gin et al., 2021a). Most DRCs are well equipped to support students with disabilities in traditional learning environments (e.g., traditional lecture courses); however, emerging research suggests that DRCs are not as prepared to serve students in innovative learning environments, such as active-learning classrooms (Meeks and Jain, 2015; Gin et al., 2020) or online courses (Gin et al., 2021a). Further, it is unclear to what extent DRCs help students navigate challenges in college learning environments outside the formal classroom; for example, many students enroll in academic credit for research in a faculty member’s research lab, thereby making it a course that appears on their transcript, but the involvement of the DRC in providing accommodations for students with disabilities in undergraduate research is not well established (Gehret et al., 2017).

The primary approach to improving attrition among college students with disabilities in science has been to reduce barriers to success in undergraduate education broadly, often by providing accommodations in courses or offering replacement courses if students cannot fully participate in a particular course (e.g., taking a lecture course instead of a lab course if they have a physical disability; Dunn et al., 2012). However, many of these accommodations are designed so that students can achieve equivalent knowledge or grades in a course; this approach takes a narrow view of what higher education entails and assumes that formal course work is the most important factor influencing a student’s decision to engage in science. In contrast, many educators view higher education as a holistic experience and believe the engagement of students in high-impact practices, many of which may not take place in formal courses, is critical to one’s persistence and success in college (Kuh, 2008). High-impact practices are defined as teaching practices that have been shown to be beneficial for college students by increasing student engagement and retention (Russell et al., 2007; Kuh, 2008; Graham et al., 2013). The Association for American Colleges and Universities defines 11 high-impact practices for undergraduates: first-year seminars and experiences, common intellectual experiences, learning communities, writing-intensive courses, collaborative assignments and projects, diversity/global learning, ePortfolios, service learning/community-based learning, internships, capstone courses and projects, and undergraduate research (Kuh, 2008). Thus, we argue that the approach to retaining undergraduates with disabilities in science should be multifaceted and extend beyond merely providing the minimal accommodations appropriate for course work. Another strategy to help increase the persistence of students with disabilities could be to increase the participation of students with disabilities in high-impact practices.

Undergraduate research is a high-impact practice that national science agencies and science educators recommend all students engage in, owing to the wide array of skills and benefits that it can provide (Kuh, 2008; National Research Council, 2012; National Academies of Sciences and Medicine [NASEM], 2017). Specifically, engaging in undergraduate research experiences (UREs) can lead to increased perceived understanding of how to conduct scientific research (Russell et al., 2007), as well as elevated student confidence in their ability to think critically (Bauer and Bennett, 2003; Brownell et al., 2015). Further, participation in undergraduate research has been shown to enhance student learning (Rauckhorst et al., 2001; Brownell et al., 2015) and bolster student confidence in their ability to conduct research (Bauer and Bennett, 2003; Seymour et al., 2004). Undergraduate research can prime students’ career goals and aspirations to become scientists (Eagan et al., 2013) and is a robust predictor of student persistence and completion of undergraduate science degrees (Graham et al., 2013; Hernandez et al., 2018). For example, a 10-year longitudinal study showed that students who completed at least 10 hours per week of faculty-mentored research across two academic terms were more likely to graduate with a science-related bachelor’s degree and be accepted into a science-related graduate program compared with students who did not engage in research (Hernandez et al., 2018). Further, undergraduate research has been shown to be a positive predictor of who excels in science-related graduate programs (Bauer and Bennett, 2003; Carter et al., 2009; Jones et al., 2010; Hernandez et al., 2018). In sum, engaging in undergraduate research has tremendous potential to positively impact a student’s persistence and experience in the sciences.

Participating in undergraduate research has been thought to be an especially important activity for individuals who are underrepresented in science (NASEM, 2017). Specifically, a study of students who participated in a minority training program that included undergraduate research found that participants had higher scientific-related career aspirations compared with students who did not participate in research (Schultz et al., 2011). Another study of graduate students who identify as persons excluded based on their ethnicity or race (PEERs) found that students highlighted their experiences in undergraduate research as a key factor that influenced their decisions to pursue a PhD and stay in science (Villarejo et al., 2008). Additionally, PEER students, particularly from Latinx backgrounds, seem to experience unique gains in knowledge and skills from participating in undergraduate research (Daniels et al., 2016). Encouragingly, studies have shown that PEER undergraduates engage in research to the same extent as white students (Lopatto, 2004, 2007; Russell et al., 2007). However, despite the evidence suggesting that research is beneficial to individuals who are underrepresented in science because of their ethnicity or race, there is much less known about the experiences of students with disabilities in research and how such students may uniquely benefit from these experiences.

The majority of extant literature on undergraduate research and individuals with disabilities probes the experiences of deaf and hard of hearing students in scientific research environments where they are surrounded by hearing peers and mentors (Pagano et al., 2015; Gehret et al., 2017; Braun et al., 2018). There are concerns that deaf and hard of hearing students are not able to easily communicate and connect with others in the lab, so they end up working in more isolated situations, which can result in negative research experiences (Thiry and Laursen, 2011; Gehret et al., 2017, 2021; Majocha et al., 2018). Group discussions with multiple people talking over one another can be hard for these students to follow, and students acknowledged that, without an interpreter standing by at all times, they often missed learning opportunities in the research lab. Notably, support services for interpreters are costly and priority often goes to classrooms, not research labs; even when interpreters are present in the research lab, they often are unsure of their role and may not have signs for some of technical jargon, making them less effective than in other learning situations (Ott et al., 2020). Additionally, research mentors can be unaware of how they may marginalize deaf students and make them feel as though they do not belong by both their explicit statements and implicit behaviors, often inadvertently promoting ableism (Braun et al., 2018; Lynn et al., 2020).

Other studies on students with disabilities in undergraduate research have explored the experiences of students with depression, some of whom consider their depression as a disability. These studies found that specific aspects of research, such as failing and lack of guidance, can exacerbate students’ depressive symptoms (Cooper et al., 2020a; Gin et al., 2021b). Further, many students with depression are uncomfortable sharing this identity with their peers and mentors, which would limit their ability to get support and accommodations (Cooper et al., 2020b). However, we know of no other literature on the experiences of students with other disabilities in research, which indicates a need for additional research.

Current Study

To address the current gaps in the literature, we conducted two studies to understand 1) how common it is for students with disabilities to do undergraduate research and 2) what their experiences are like once they are in undergraduate research. Our studies were guided by the following research questions:

Study 1:

1. To what extent are students with disabilities participating in undergraduate research experiences?

Study 2:

1. What are the unique challenges that students with disabilities experience in undergraduate research?

2. How do students with disabilities navigate challenges in undergraduate research?

3. What are the unique benefits that students with disabilities experience in undergraduate research?

4. Are there unique ways in which students with disabilities contribute to undergraduate research?

Theoretical Models Informing This Work

The medical model of disability was the predominant way of describing disability in the 20th century and considers disability to be a physical or mental impairment of the individual that has personal and social consequences (Oliver, 1996, 2013; Shakespeare, 2006). The medical model of disability suggests the limitations faced by people with disabilities primarily result from their impairments. In contrast, the social model of disability, which emerged during the disabilities rights movement of the 1970s and 1980s, argues that disability is a social construct; an individual may have a functional limitation, or physical, mental, or sensory impairment, but what makes that individual have a disability is that opportunities are taken away due to the attitudes and structures of society (Barnes and Mercer, 1997; Stone, 1997; Charlton, 1998). The social model of disability has become the prevailing model of the 21st century used by disability scholars. While each of these models has its limitations, neither, in its extremes, is truly sufficient to describe the experiences of individuals with disabilities (Shakespeare, 2006; Goering, 2010; Oliver, 2013). Practitioners have argued that these models of disability can be synergistically considered in a pragmatic sense to describe the disability experience from the perspective of individuals with disabilities (Toombs, 1995; Overboe, 1999). Thus, in this research, we have chosen to consider elements of both models when describing the experiences of undergraduate researchers with disabilities. Specifically, we consider students’ experiences in research from the following perspectives:

• Medical model perspective: We use the students’ experiences of living with different physical, sensory, cognitive, or affective functions than the majority of the population to understand how they perceive their disabilities interfere with or prevent them from engaging in undergraduate research.

• Social model perspective: We use the students’ experiences of facing attitudes, structures, bias, stigma, and discrimination based on their different physical, sensory, cognitive, or affective functions to understand how the students perceive that societal structures or attitudes interfere with or prevent them from engaging in research.

In addition, we examine what unique perspectives students with disabilities perceive they bring to undergraduate research. Using an asset-based approach, we consider the ways in which students with disabilities may possess unique strengths and skill sets that they bring to their research experiences (López, 2017). This is in contrast to a deficit-based approach, which focuses on the perceived weaknesses or shortcomings of an individual (Dinishak, 2016). We also consider the unique benefits that students with disabilities may receive from participating in undergraduate research.

METHODS

This study was approved by Arizona State University’s Institutional Review Board STUDY00007247.

Study 1 Methods

Survey Development.

In Fall 2018 and Fall 2019, we conducted a national survey of undergraduate researchers in the life sciences at research-intensive (R1) public institutions, research-intensive (R1) private institutions, master’s-granting institutions, and primarily undergraduate institutions (PUIs). The survey generally asked students about their overall experiences in undergraduate research. In addition, students were asked specifics about their UREs, such as the position of their primary mentors (e.g., graduate student, faculty member) and how many hours they spent in research per week. Students also answered general demographic questions, including a question about their disability status. The question specifically asking about disability status was developed by reviewing the literature on different ways that disability status has been collected (e.g., Livermore et al., 2011; Cappa et al., 2015; Verbrugge, 2016) as well as how organizations and agencies (e.g., NSF, National Center for Science and Engineering Statistics, CDC) define disability. We drew from these existing surveys to create an inclusive question to determine disability status. Specifically, students were invited to select whether they identified as having a disability, which included a learning disability (e.g., dyslexia), a mental health/psychological disability (e.g., anxiety, depression, PTSD), a physical disability (e.g., cerebral palsy, spina bifida, dwarfism), a chronic health condition (e.g., cancer, diabetes, multiple sclerosis), visual loss (e.g., blind), hearing loss (e.g., deaf), or another disability, which they were asked to describe. Students were invited to select which type(s) of disability/disabilities applied to them and could select more than one that applied. Notably, this question did not require students to be diagnosed in order to identify as having a disability, because access to healthcare can vary based on student demographics such as gender, race/ethnicity, and socioeconomic status (Adler and Rehkopf, 2008; Thompson et al., 2016; Sommers et al., 2017; Baeten et al., 2018), and we did not want to bias our sample in ways that privilege those who have access to mental healthcare. Cognitive think-aloud interviews were performed with two undergraduate researchers with disabilities to test the validity of the questions on the survey based on verbal reports of their thought processes (Trenor et al., 2011). The survey was iteratively revised based on each think-aloud interview. The survey was then piloted with undergraduate researchers at a large public research-intensive (R1) institution in the Southwest. A copy of the questions analyzed in this study are provided in the Supplemental Material.

Student Recruitment.

In Fall 2018, we used the Carnegie classifications to identify all public R1 institutions in the United States. We used the university websites to identify individuals in life sciences departments who would be able to send an email to all undergraduate students via a Listserv or mailing list (e.g., undergraduate program manager). We then contacted all 81 public R1 institutions with a personalized email to request that they forward our survey announcement to their students. Twenty-five (31%) public R1 institutions agreed to send the survey out to students in their respective life sciences departments. In Fall 2019, we expanded our survey recruitment to other institution types. We repeated a similar process of using Carnegie classifications to identify private R1 institutions, master’s-granting institutions, and PUIs as well as points of contact in life sciences departments to forward our survey. We contacted a total of 37 private R1 institutions, 12 of which agreed to send the same survey out to students in their department (32%), 350 master’s-granting institutions, of which 30 (9%) agreed to send out the survey, and 241 PUIs, of which 20 (8%) agreed to send the survey out to students in their life sciences department. In total, we recruited from 87 institutions. Students were incentivized to complete the survey by being entered into a drawing to win one of four $50 gift cards each term. Our recruitment method was intentionally not done through DRCs, because we wanted to be able to capture the experiences of students with disabilities who may not be registered with a DRC or who may not have had the health insurance or finances required to be formally diagnosed with their disabilities. Further, we intentionally did not recruit from a specific program (e.g., NSF REU program), because these programs often have greater levels of support and mentorship through a cohort model than traditional independent research experiences, and we wanted to be able to have representation from undergraduates who are not necessarily in these types of programs.

Survey Data Analysis.

We used descriptive statistics to calculate and report the general demographics and research characteristics of the students who reported having a disability. To contextualize our findings, we compared them with results from national surveys assessing the representation of individuals with disabilities in the general U.S. population (CDC, 2018) and life sciences majors (NSF, 2016). To compare the representation of individuals with disabilities among different populations, it is important to distinguish how the term “disability” is defined and measured in each survey. We found that the definition and measurement of disability varied based on the organization that collected the data, which can affect conclusions that are drawn from these data. For example, the percent of the U.S. population with a disability is calculated by the CDC, which classifies disability as a condition that affects mobility, cognition, independent living, hearing loss, vision loss, and self-care; it is unclear, for instance, how or if mental health disabilities would be categorized within this organizational schema (CDC, 2018). The NSF collects data on disability status for undergraduate enrollment data; they consider disability as “blindness, deafness, severe vision or hearing impairment, substantial limitation of mobility, or any other physical, mental, or emotional condition,” but restrict this to a time frame of having the condition within the last 6 months (NSF, 2016). By not explicitly including mental health disabilities and requiring a particular time frame that an individual has been affected by a disability, the CDC and the NSF may be underestimating the number of individuals with disabilities.

Study 2 Methods

Interview Recruitment.

At the end of the survey described in study 1, we asked whether students would be interested in participating in follow-up interviews about their experiences in research. In Summer 2020, we contacted all students with disabilities who participated in the 2018/2019 surveys and asked them if they would be interested in participating in an interview about their UREs as an individual with a disability. A copy of the recruitment email can be found in the Supplemental Material. Students were offered a $15 gift card as an incentive to participate in the interview. Of the 152 students with disabilities who completed the study 1 survey, 20 undergraduate researchers with disabilities (13%) from eight institutions agreed to participate in the interviews.

Interview Protocol.

The interview script was developed to explore the overall experiences of students with disabilities in undergraduate research and align with our research questions. Specifically, the interview questions asked students about 1) the extent to which they encountered challenges with conducting their undergraduate research; 2) what solutions or accommodations, if any, were helpful in navigating challenges in their UREs; 3) whether they perceived they uniquely benefited from conducting undergraduate research as a researcher with a disability; and 4) whether they perceived there were any unique contributions they brought to the undergraduate research context given their experiences as an individual with a disability. To ensure that each question would be interpreted correctly by our interviewees, we completed two think-aloud interviews with students with disabilities who had previously conducted undergraduate research (Trenor et al., 2011). The interview protocol was revised upon conducting the two think-aloud interviews. These students in our study had engaged in undergraduate research before COVID-19, although the interviews were conducted during the COVID-19 pandemic. As such, we specifically asked students to consider their time in undergraduate research before the pandemic. A complete copy of the interview protocol can be found in the Supplemental Material.

Interviews and Post Survey.

All interviews took place during Summer 2020. The interviews were semistructured, meaning that all students were asked the same set of questions, but additional follow-up questions were asked to allow students to elaborate on interesting ideas (McIntosh and Morse, 2015). It is also important to be attentive to the needs of individuals with disabilities who participate in research studies, particularly qualitative research (Kroll et al., 2007). As such, our recruitment email and reminder asked students if they needed any accommodations for participating in the interview to maximize the accessibility of the interview process (e.g., live transcriptions or an interpreter). The interviews were conducted via Zoom, audio-recorded, and ranged from 45 to 60 minutes in length. The interview audio files were transcribed for qualitative analysis. To protect the identities of the participants, we assigned each person a pseudonym. The quotes from students were lightly edited for clarity, consistency, and anonymity. After the interviews were complete, students were given a brief follow-up survey asking about demographic information. The follow-up survey also included questions that were specific to a student’s disability, such as whether they were formally diagnosed and whether they were registered with the university’s DRC. A copy of the post survey can be found in the Supplemental Material.

Interview Analysis.

We used inductive coding methods to identify themes from the interview data (Fereday and Muir-Cochrane, 2006). First, two authors (L.E.G. and D.P.) reviewed the same five randomly selected interviews independently and took detailed analytic notes to identify initial themes in the data. The researchers then came together to use their notes from these interviews to draft an initial codebook. Once the initial codebook was developed, the same two researchers reviewed a different subset of five interviews independently to determine whether the themes in the existing codebook were present and whether additional themes emerged. Afterward, the researchers met again to compare their notes from these additional interviews and revise the codebook accordingly. The revision of the codebook ensured that each code was distinct and independent of other codes; that is, the researchers checked that each portion (or unit) of a student’s thought would be captured by a single code. Any overlapping themes were revised to make sure that units remained independent and that themes were distinct enough to remain separate or similar enough to be combined. Additionally, the researchers used constant comparison methods to determine that quotes within the same theme were not too different from one another to merit creating an additional theme (Glaser, 1965; Glesne and Peshkin, 1992). Once the final codebook was agreed upon, the two researchers independently coded a new subset of five interviews (25%) to establish interrater reliability (Cohen’s κ  =  0.89, which is considered acceptable; Landis and Koch, 1977). After interrater reliability was established, one researcher (L.E.G.) coded the remaining 15 interviews. Because inferences about the importance of these themes cannot be drawn from counts, they are not included in the results of the paper (Maxwell, 2010), but are provided in the Supplemental Material along with the final coding rubric describing each theme. However, we caution readers against making generalizations based on the frequency of reported themes because of the nature of our qualitative methodology. Namely, because some types of disabilities are represented in our sample more than others, drawing conclusions about challenges, solutions, and benefits for students with different types of disabilities may be inappropriate.

Student Demographics and Disability Information

All students in this study self-identified as having at least one disability. We used a previously developed organizational schema to categorize students’ disabilities throughout the paper (Gin et al., 2020). Students’ disabilities were categorized as learning disabilities (e.g., autism, attention deficit/hyperactivity disorder [ADHD], dyslexia), physical disabilities (e.g., cerebral palsy, spina bifida), chronic health conditions (e.g., cancer, diabetes), vision loss, hearing loss, and mental health and psychological disabilities (e.g., anxiety, depression). There is some disagreement in terms of how to categorize certain types of disabilities (e.g., autism and ADHD as learning disabilities), as well as the overlapping nature of certain disabilities and categories (Mayes et al., 2000; Budd et al., 2016). Additionally, the personal experiences of individuals are unique; even if two people have the same type of disability, the severity of the condition may differ or their personal or environmental situations may be different (Brown, 2002; Shakespeare, 2006). However, we chose to categorize students’ disabilities in this way to preserve the confidentiality of students’ specific disabilities or combination of disabilities, which may make a particular student identifiable, especially in the context of UREs. We report each of the disabilities next to the student’s pseudonym and respective quote but encourage readers not to make conclusions about any particular type of disability due to the small number of students with a given disability who were interviewed. A list of the types of disabilities reported by students and their pseudonyms can be found in the Supplemental Material.

Researcher Positionalities

The first author (L.E.G.) has a physical disability and conducted all of the interviews for this study. He disclosed his disability to all students who participated in interviews in an attempt to establish rapport and create a welcoming environment for the students to discuss their experiences (Kvale, 1996). This author also developed the rubric and coded the interviews. Another author (D.P.) who helped develop the coding rubric has a close family member with a developmental disability. These two researchers used their personal experiences with disability to inform the coding rubric and analysis while also attempting to counteract any potential biases that they may hold (Chenail, 2011). Additionally, members of the research team have personal experiences of struggling with depression and anxiety, either their own or that of close family members, which has influenced this work. The researchers used the interviews as an opportunity to learn from the lived experiences of those with a range of disabilities (Toombs, 1995). All members of the research team have currently or previously conducted either undergraduate or graduate research in life sciences as well as science education research, so there is an understanding of the dynamics of research experiences.

RESULTS AND DISCUSSION

For both studies, we chose to present our results and discussion together to contextualize the findings in the literature.

Study 1

Finding 1: Students with Disabilities Are Likely Underrepresented in Undergraduate Research.

In our national survey of 1262 life sciences students engaged in undergraduate research across 25 public R1s, 12 private R1s, 30 master’s-granting institutions, and 20 PUIs, 12.0% of respondents (n = 152) reported having a disability. This percentage indicates that individuals with disabilities are underrepresented in undergraduate research compared with the approximately 18% of students with disabilities who are pursuing undergraduate degrees in the life sciences (NSF, 2016) and the 26.0% of the U.S. population of individuals who identify with having disabilities (Centers for Disease Control and Prevention, 2018; Figure 1). Despite the differences in how each agency that collects data on individuals with disabilities defines having a disability (see Survey Data Analysis section for details), we feel confident in concluding that individuals with disabilities are underrepresented in undergraduate research in the life sciences given the data collected in this study. The primary difference between our definition of disability and those used by the CDC and NSF is that our definition explicitly included students with mental health disabilities to be as comprehensive as possible. If we were to remove individuals who report mental health disabilities from our data, we would have even greater underrepresentation of students with disabilities (5.0%, n = 63) in undergraduate research.

Who Are the Students with Disabilities Participating in Undergraduate Research?

The undergraduate researchers who were surveyed reported a variety of different types of disabilities, with mental health (58.6%) and learning disabilities (24.3%) being the most prevalent. For students who participated in interviews, 55.0% of students reported a mental health condition and 50.0% of students reported a learning disability. The majority of students who were surveyed and who were interviewed were women (78.9% and 70.0%, respectively), white (67.1% and 55.0%, respectively), and continuing-generation college students (75.7% and 80.0%, respectively). Students varied in their year in school, with fourth-year students being most represented for both the survey respondents and interviewees (44.1% and 45.0%, respectively). The average grade point average (GPA) was 3.54 for students who completed the survey compared with 3.37 for students who agreed to participate in the interviews. Additional demographic information can be found in the Supplemental Material.

Regarding students’ research experiences, the most common response for time spent doing research was 6–10 hours per week (47.4% of the survey respondents; 40.0% of the interviewees); 41.4% of students in the survey had engaged in research for 1–2 years, while 35% of students who were interviewed had engaged in research for 2–3 years. Students in both samples were primarily mentored by a principal investigator (PI) (44.1% and 30.0%, respectively) or a graduate student (28.9% and 25.0%, respectively) and had received course credit (69.7% and 65.0%, respectively) for participating in research. Most students who completed either the survey or interview were attending research-intensive public institutions (53.9% and 55.0%, respectively). Table 1 summarizes the student demographics, research demographics, and disability-specific demographics for the national sample of student researchers with disabilities.

Study 2

Finding 1: Students with Disabilities Experienced Unique Challenges in Undergraduate Research

Students Reported Challenges Related to Their Disabilities That Can Make It Difficult for Them to Carry Out Specific Research-Related Tasks.

Nearly all students in this study referenced personal challenges related to their disabilities that prevented them from fully participating in their UREs. Specifically, students described that the symptoms or effects of their disabilities impeded their ability to do research-related tasks. For instance, Michael and Albert described how their disabilities may make it difficult to complete tasks that require reacting quickly or are tedious.

Further, Amy and Judith described how their disabilities can impact their overall productivity in research.

Students with disabilities also highlighted that when their disabilities negatively affected their ability to do research, they needed to repeat or make up missed work, which often increased the total amount of time that they had to spend on research. For example, Judith explained how she had to repeat observations when her disability interfered with her attention span.

Amy highlighted that when her disability negatively affects her productivity in research, she often feels pressure to catch up by working without breaks, which can lead to additional stress that affects her disability.

Michael described how his disability causes him to spend more time doing research than his peers.

Several students with disabilities indicated a need to compensate for their disabilities by working for extended times or feeling the pressure to make sure their disabilities have not affected their research productivity. The need to work for extended time periods and working without breaks can lead to burnout, defined as a work-related chronic stress syndrome involving feelings of cynicism, emotional exhaustion, and reduced personal accomplishment (Maslach et al., 2001; Bianchi et al., 2014; Koutsimani et al., 2019). In fact, studies have shown that individuals who experience burnout are likely to later report a disability (Ahola et al., 2009), and burnout has been shown to be significantly associated with some mental health disabilities, namely anxiety and depression (Koutsimani et al., 2019). However, the students’ experiences in our study indicate that undergraduate researchers with disabilities could be at risk for experiencing burnout if they feel they need to compensate for delayed or disrupted research related to their disabilities (Toppinen-Tanner et al., 2005), which could lead to a recurring cycle of nonproductivity and heightened mental stress (Abramson et al., 1989; Murphy et al., 2007).

Based on our interviews, it is evident that students often resort to adopting the medical model of disability perspective when conceptualizing the relationship between their disabilities and research productivity. Specifically, they often describe their disabilities as functional limitations resulting in impairment, preventing them from completing a certain task (Brisenden, 1986). For example, Caroline, Judith, Amy, Michael, and Albert all described how their disabilities prevented them from engaging in research. During the interviews, students rarely described their challenges from the social model perspective. Considering the social model would identify societal norms, attitudes, or structures that are barriers for students given their disabilities (Siebers, 2008; Oliver, 2013; Sins Invalid, 2019). However, some students did recognize how the societal norms of science, such as expecting everyone to read dense research papers quickly, may exclude individuals with disabilities from fully engaging in science. For example, Rebecca highlights that providing her with a summary of a paper would significantly shorten the time she needs to spend reading.

Encouraging both students with disabilities and members of research labs, including PIs, to view the experiences of students with disabilities through a social model perspective is an important step toward creating a more accessible scientific community. For example, had Rebecca’s research mentor known about her disability, they could have showed her text-to-speech technologies and programs that would allow her to listen to a scientific paper read aloud (e.g., Inclusive Docs or NaturalReader) or to first try to interpret the figures, which may have created a more positive experience for her. Identifying ways that the traditional process of doing science can change, as opposed to how students with disabilities should mold into the traditional process of science, would be important moving forward (Brown and Leigh, 2018; Peterson, 2021).

Undergraduate Researchers with Concealable Disabilities Experienced Unique Challenges Related to Whether They Revealed Their Disabilities in Undergraduate Research.

Some disabilities are apparent or visible, while others are not apparent or invisible (Kranke et al., 2013). There is general stigma around having a disability (Fine and Asch, 1988), and as such, students who have nonapparent or invisible disabilities have what could be considered concealable stigmatized identities, or CSIs (Joachim and Acorn, 2000; Quinn and Earnshaw, 2011; Quinn et al., 2014). CSIs are identities that can be kept hidden from others and that have negative stereotypes attached to them that can result in a loss of status and/or discrimination in society (Link and Phelan, 2001; Quinn and Earnshaw, 2011). Students who had disabilities that they described as nonapparent reported experiencing unique challenges related to their disabilities and whether they choose to reveal them in the context of undergraduate research.

Students discussed how they often chose not to disclose or discuss their disabilities with members of their research groups. Some students, such as Wanda, experienced instances where a stigma about disability was mentioned in conversations with other members of their research groups, which discouraged them from revealing their disabilities.

In addition to students feeling that disclosing a disability could result in others doubting their abilities, some students, such as Cornelius, mentioned that they did not disclose or discuss their disabilities because they did not want the disclosure to result in any questioning about their abilities to perform specific research-related tasks, such as writing, analyzing data, or problem solving.

The experiences of Wanda and Cornelius echo studies suggesting that individuals with CSIs often assess the beliefs of those around them before revealing their identities (Jones and King, 2014). If there is an indication that someone in one’s research group may not be accepting of one’s identity, then individuals are unlikely to reveal their own identities (Barnes et al., 2020, 2021; Cooper et al., 2020b). Additionally, Cornelius’s experience is further supported by studies that have shown that both undergraduate and graduate students with depression often choose to conceal their depression from their PIs, because they fear that revealing this aspect of themselves would result in research responsibilities being restricted, even though students who do reveal their depression to their PIs do not report any loss of responsibilities (Cooper et al., 2020b). However, one student in the current study, Michele, did reveal her CSI and highlighted how she perceived that she was left out of experiments and collaborations once others knew of her disability and that others would make negative remarks about how she was unable to do something.

Some students who had self-described more apparent disabilities discussed how they sometimes downplayed their disabilities. They explained that if they concealed their disabilities, at least at first, others would be more likely to believe it did not affect their research performance. For example, Gabriella describes hiding her hearing aids and monitoring her speech so that others in her lab did not notice her disability.

Feeling the need to conceal one’s disability in research can be detrimental to students for multiple reasons. First, concealing an identity can lead to psychological distress and take an emotional toll on students (Mak et al., 2007; Goffman, 2009; Quinn and Chaudoir, 2009; Quinn et al., 2014). Specifically, individuals who conceal an identity may worry about 1) someone revealing their identity when they do not want it to be revealed, 2) when they may need to reveal that identity, and 3) what may happen when others learn about the given identity, all of which can lead to further internalized distress (Link and Phelan, 2001; Quinn and Chaudoir, 2009; Quinn and Earnshaw, 2011). Additionally, experts on mentorship assert that effective mentorship requires an understanding of identity-related challenges students face, so that mentors can help meet the needs of their mentees (NASEM, 2019). As such, we encourage lab mentors to be mindful about what they say about student identities, including disabilities, and to work to create an inclusive environment where students can feel comfortable revealing their disabilities if they choose (Cooper et al., 2020b). Students feeling comfortable discussing their disabilities with lab members is likely necessary to make the research environment more inclusive (Chaudoir and Fisher, 2010).

Finding 2: Students with Disabilities Navigate Undergraduate Research Experiences by Finding Unique Solutions to the Challenges They Experience

Few Students Reported That They Have Received Formal Accommodations in Undergraduate Research through the University’s DRC.

Traditionally, when students with disabilities are enrolled in university courses, they work with DRCs to receive accommodations to make learning environments more accessible (Feldblum, 1996; Madaus, 2011). If a student is enrolled in undergraduate research for course credit, as is the case for 65.0% of the students who were interviewed in this study, then technically the student should have the same access to the DRC and accommodations as for any other course at the university. However, most students who were interviewed, like Skylar and Anita, did not think that they could ask about accommodations for their UREs through their universities’ DRCs.

Recent research has unveiled that DRCs typically do not have blanket accommodations for modified learning environments, such as active-learning or online courses (Meeks and Jain, 2015; Gin et al., 2020, 2021a). As such, many DRCs may not be equipped to provide accommodations for students in UREs, and students may be unaware of the potential role of the DRC in providing accommodations for undergraduate research. Interview participants, such as Albert, also expressed doubt that the DRC would be able to accommodate their needs in this unique context.

It is not clear to what extent DRCs are aware that students with disabilities in undergraduate research need accommodations. However, some standard classroom accommodations could be used or adapted to an undergraduate research setting. For example, students with a disability that typically requires a note-taker in a lecture classroom may need one-on-one research meetings or lab meetings to be recorded and transcribed. This could be particularly helpful if a mentor is describing how to do a complicated step-by-step procedure that students with disabilities would need to do on their own in the future. An alternative accommodation may be to have another undergraduate researcher work closely with the student on a project and help take notes. For common lab techniques, the lab could be asked to create detailed written protocols available for everyone in the lab. Another common standard classroom accommodation is extended time for testing or assignments. For students who need extra time to complete assignments, an accommodation in the research lab may be longer time frames to complete tasks or more advanced notice about an experiment or task. While this may slow the pace of the research, not feeling rushed will likely result in better research products and may help students avoid making mistakes. Finally, excused absences are often provided to students whose disabilities are interfering with their ability to come to class; this accommodation can be administered in a research environment by allowing for flexible work hours or lab members to work from home if the task allows it. While students and mentors could likely arrive at some of these solutions on their own, having the DRC facilitate these accommodations relieves students from the burden of self-advocacy and likely would decrease the time lapse for students to receive the accommodation (Meeks and Jain, 2015; Gin et al., 2020, 2021a; Pfeifer et al., 2020, 2021). Additionally, students who are participating in paid UREs may be eligible for workplace accommodations through human resources and other employee support services. However, students who are participating in undergraduate research as volunteers would likely be ineligible for services through the DRC and human resources, making it important that students and research mentors work together in reaching solutions to make a research space more accessible.

Undergraduate Research Experiences Require That Students with Disabilities Self-Advocate to Maximize Their Experiences in Research and Most Accommodations Are Developed on an Individualized Basis between the Students and Their Research Mentors.

No student who was interviewed reported using the DRC to receive accommodations in research, although nearly all students who dealt with disability-related challenges in their UREs needed to self-advocate to mitigate their challenges. Self-advocacy involves voicing needs and concerns to identify potential solutions and having a “knowledge of self,” defined as one’s own understanding of one’s strengths and weaknesses, rights, and policies related to the accommodation process as well as the communication skills to be able to discuss accommodations (Eckes and Ochoa, 2005; Test et al., 2005). Pfeifer and colleagues have further described a model of self-advocacy for science, technology, engineering, and mathematics (STEM) students with ADHD and/or specific learning disabilities (SLD), which also includes the knowledge of the STEM learning context (e.g., laboratory courses), the knowledge of available accommodations, and the knowledge of the process to successfully obtain these accommodations. Studies have shown that undergraduate students with disabilities may find it challenging to self-advocate, particularly in science, as they navigate interactions with instructors, peers, and DRC support staff (Pfeifer et al., 2020). For some students, like Hugh, self-advocacy comes in the form of communicating with mentors to help them become aware of his disability. These explicit conversations to personally inform his mentors about his disability can help ensure his safety in the lab and explain how his disability may affect his overall experience in undergraduate research.

Other students used self-advocacy to foresee potential issues that may arise in their research experiences. Students like Temple described that being upfront about their disabilities and what they need can help prevent misunderstandings, because a research mentor may misunderstand a certain situation for a student with a disability in research.

Students who self-advocated often found solutions through working with their mentors. For example, Anita, Tia, and Rebecca did not use the DRC for accommodations, but did work directly with their mentors to acquire accommodations for their research experiences. It is worth noting that many of the solutions that students and mentors agreed upon can be relatively simple to implement, such as being flexible with a student’s schedule or providing written instructions or pictures to students. However, this requires that a mentor knows about the student’s disability and how it impacts the student. Students like Anita and Tia have disclosed their disabilities to their research mentors, which has benefited them through accommodations such as additional notes, instructions, or figures.

Further, even if research mentors are unaware that a student has a disability, inclusive mentoring strategies can help provide a level of accommodation. For example, the accommodation that Rebecca described, which was rescheduling a meeting to a later date, is a general strategy that mentors could use with all students, independent of having a disability.

In addition to self-advocating with mentors, student researchers with disabilities also described self-advocating with their lab mates. Lab mates knowing about students’ disabilities and their needs may help facilitate efforts to maximize students’ experiences in undergraduate research (Quinn and Earnshaw, 2011; Quinn et al., 2014). For example, students like Naomi discussed that other members of her lab were able to check in with her to see how she was doing and if she needed anything after she had talked to them about her disability.

Studies have shown that individuals with depression have also noted that once they disclose this CSI, their lab mates are more likely to support and check in on them (Cooper et al., 2020b). Studies have also shown that students who disclose identities are more likely to come in contact with similar others, because disclosing one’s CSI can lead to others disclosing a CSI if they have one (Quinn et al., 2014). Additionally, the ways in which one views one’s own disability can have an influence on one’s ability to self-advocate effectively (Pfeifer et al., 2020). For example, if students have a more positive views of their disabilities, they may be better at self-advocating. As such, self-advocacy can be a powerful, albeit sometimes draining, way for students to access accommodations and the resulting benefits (Lynch and Gussel, 1996; Test et al., 2005; Hong, 2015; Pfeifer et al., 2021).

Students Also Relied on Their Own Creative Solutions to Maximize Their Research Experiences.

In addition to working directly with their mentors and lab mates to maximize their research experiences, some students discussed creating their own solutions to challenges that they encountered in their research experiences. This is aligned with Pfeifer and colleagues’ framework of self-advocacy for ADHD/SLD in STEM through the component of “filling gaps,” which is when the individual student takes action to mitigate a perceived limitation in a given accommodation (Pfeifer et al., 2020). This is illustrated by Naomi and Katie, who both developed unique ways to adapt to challenges and barriers that their research environments posed, such as using sunglasses for bright computer screens or positioning themselves toward their mentors when having conversation.

As Naomi and Katie describe, they are often having to adjust to societal standards and structures that may not be suitable for those with disabilities, which can be both physically and emotionally taxing. Such standards and structures, which were built on a history of ableism, were not created with individuals with disabilities in mind (Goodley, 2014; Peterson, 2021). The juxtaposition between students with disabilities working with mentors to change something about the structure of a lab or the behavior of people within a lab and students with disabilities changing their own behaviors to maximize their experiences as someone with a disability in research reflect the social and medical approaches to disability, respectively (Brisenden, 1986; Shakespeare, 2006). Considering the social model of disability, the mentor or lab mate recognizes that the way research is being conducted is excluding the student from participating. In contrast, students with disabilities who change their own behavior reflect an assumption (perhaps of their mentors or lab mates) that their disabilities limit what they can do in research. This has also been illustrated with students who are deaf or hard of hearing in undergraduate research, where some individuals created their own communication strategies with hearing mentors, including writing on laboratory whiteboards or texting to communicate (medical model), whereas others had hearing mentors who were willing to learn basic American Sign Language as a way to establish a deaf-friendly research environment (social model; Braun et al., 2018; Majocha et al., 2018). Previously, our research group has argued that developing accommodations on an individual basis will meet the unique needs of the student, but that it often takes longer to secure the accommodations and requires the student to encounter a problem before an accommodation is offered (Gin et al., 2020). The wasted time spent encountering the problem and responding to the problem may be sufficient to derail that student from persisting; in some cases, the problem may never be addressed. Thus, we urge future research to explore what, if any, accommodations are available and scalable in hopes of identifying standardized accommodations that would allow students to be supported in undergraduate research before they encounter a challenge. Some of these solutions may be difficult for individual mentors to provide for students, because a lab may not have the funding or resources available to assist a student (e.g., adaptive equipment, software, or technologies). Therefore, it would be increasingly important to have assistance from outside sources, such as the department, the university’s DRC, or national funding agencies, to better accommodate students with disabilities in research. As universities are required to accommodate students (Section 504 of the Rehabilitation Act, 1973; Americans with Disabilities Act of 1990, 1990; ADA Amendments Act of 2008, 2008), policies need to be in place so that a lab mentor can know who to go to for funds for these accommodations.

Finding 3: Students with Disabilities Reported Distinctive Benefits from Participating in Undergraduate Research.

Studies have shown that, on average, students benefit from engaging in undergraduate research (Seymour et al., 2004; Russell et al., 2007; Thiry et al., 2012; NASEM, 2019), but we wanted to examine whether students perceived that they reap unique benefits from research, given their disabilities.

Undergraduate Research Can Counteract the Narrative That Students with Disabilities Cannot Do Science or Enter Scientific Careers.

Systemic ableism has resulted in few examples of scientists who identify as having a disability, so students with disabilities often lack role models in science who may be able to provide them with navigational capital and advice for how to pursue a career in science (Listman and Dingus-Eason, 2018; Cooper et al., 2020b). Further, the absence of role models, coupled with the often hostile environment in science for individuals with disabilities (Dunn et al., 2012), can erroneously present a narrative that individuals with disabilities cannot pursue careers in science. This perceived identity incompatibility has been shown to be a factor in the attrition of science students (Rosenthal et al., 2011, 2013; Good et al., 2012). As such, bolstering the confidence of students with disabilities to counteract that narrative of their ability to do science may be integral to promoting retention among these students (Adedokun et al., 2014; Daniels et al., 2016). When students in this study were asked about their confidence in their ability to do science, they often described that their confidence before they started research was low, because it was based on their sometimes poor performance in traditional lecture courses. Yet studies have shown that these undergraduate courses are often inaccessible for students with disabilities and may not accurately reflect their ability to do science (Mason and Hedin, 2011; Harshman et al., 2013; McMahon et al., 2016; Braun et al., 2018). After conducting undergraduate research, some of these students felt for the first time that they could be a scientist. For example, Odette and Tia highlight how their experiences conducting undergraduate research disrupted their initial impressions of their abilities to do science.

Overall, the reflections from Odette and Tia demonstrate that their experiences in undergraduate research changed their confidence in their ability to do science, because their experiences demonstrated that they can be successful as researchers. Doing undergraduate research allowed them to feel like they were actually “doing science,” showed them that they could be scientists, and helped them in adopting a science identity (Hazari et al., 2013).

There is ample evidence that UREs can be career defining for students; for example, UREs are one of the best predictors for continuing on in research careers (Bauer and Bennett, 2003; Seymour et al., 2004; Russell et al., 2007; Carter et al., 2009; Estrada et al., 2016). However, for these students with disabilities who do not often see role models in science, UREs allowed them to disrupt their assumptions that they could not pursue careers in science and see themselves as future researchers. For students like Tia, the URE allowed her to recognize the value of doing research and showed her that it is a possible career path, although she initially doubted her ability to succeed in research.

One of the students in the study, Jesse, described working in a research lab that studied autism. Based on his experience as someone who identifies as autistic, he developed an understanding of some of the limitations of this research if it is not done by someone whose community is directly affected by the work. Additionally, as someone with a chronic health condition, he noted that having the opportunity to conduct research has given him better insights into what he needs for an accessible work environment, such as having comfortable seating or having the option to leave the lab space as needed.

While students with disabilities often enter undergraduate programs with the same level of interest in science as students without disabilities (Thurston et al., 2017), their completion rates and matriculation rates into advanced degree programs and science professions remain lower (U.S. Bureau of Labor Statistics, 2020). As such, this finding highlights the important potential for UREs to have a positive impact on career choices for students with disabilities. In this case, undergraduate research can serve as work-based learning experiences that can be influential for individuals with disabilities (Lave and Wenger, 1991; Bellman et al., 2014). The ability to explore career options before joining the workforce can be particularly helpful for individuals with disabilities who may inaccurately assume that they cannot pursue a career in scientific research (Hershenson, 2005).

Students with Disabilities Discussed That Undergraduate Research Provides Them with a Unique Context to Build Resiliency and Overcome Obstacles.

Failure, particularly student response to failure and fear of failure, has been proposed to have implications for student attrition and retention to science programs (Harsh et al., 2011; Simpson and Maltese, 2017; Henry et al., 2019, 2021). The use of maladaptive coping, or not being able to cope properly, has been shown to negatively affect an individual’s well-being and also prevent the individual from making progress, finding a resolution, or moving beyond the initial failure (Carver et al., 1989; Struthers et al., 2000; Skinner et al., 2003; Henry et al., 2019). Conversely, students who experience “productive failure,” defined as engaging students in unstructured, complex problem solving and challenging tasks that students know they may be unable to complete (Kapur, 2008; Kapur and Bielaczyc, 2012), can develop resiliency and behaviors that may help them successfully navigate future challenges in science (Skinner et al., 2003; Gin et al., 2018; Henry et al., 2019, 2021). Undergraduate research has been described as a potentially impactful way to teach students to deal with obstacles, setbacks, and failure (Auchincloss et al., 2014; Firestein, 2015; Gin et al., 2018; Henry et al., 2019). However, the failure inherent in research has been shown to be particularly difficult for some students, including students who have disabilities like depression (Cooper et al., 2020b; Gin et al., 2021b), although we know of no studies that have examined how students with disabilities broadly navigate failure in the context of research.

Many individuals with disabilities face challenges in their everyday lives (Campbell et al., 1999; Koon et al., 2020). Studies have shown that, while resilience is important for individuals with disabilities, it can be a challenging skill to build (Alschuler et al., 2016). However, individuals with disabilities who build resilience and overcome obstacles can experience a better quality of life, more overall satisfaction, and improved health benefits (Alriksson-Schmidt et al., 2007; Silverman et al., 2015). Thus, providing students with an opportunity to build resiliency to obstacles and overcome challenges in a context such as undergraduate research may have a positive broader effect on students with disabilities. Indeed, as Skylar and Naomi point out, their perseverance in undergraduate research has helped them overcome obstacles in other aspects of their life and made them proud of what they have accomplished.

Temple also highlighted how her experience in research altered the way she perceives failure, as well as how she reacts when others experience failure.

Because these students experienced challenges and failure in the context of undergraduate research, they have been able to gain new perspectives on how obstacles should be approached and have become more understanding of others who may encounter difficulties in their research experiences. Although we present these examples because the students highlighted overcoming challenges and failure as a benefit of participating in research, there has been critique of asking students to persist through difficulties, which has been termed “grit” (Duckworth et al., 2007), and other research has shown that failure can be detrimental to students (Brunstein and Gollwitzer, 1996; Smith et al., 2006). As such, we want to acknowledge that we are not advocating for putting the burden on the student to persist and overcome the failure; mentors can provide students with projects with a lower likelihood of failure, and sufficient guidance from a mentor can help students identify a mistake earlier in the process, help make sense of confusing patterns in the data, and even recognize when to give up on a project. In sum, we do not feel as though students, including students with disabilities need to experience failure to become a scientist, but we do want to highlight how “productive failure” may be beneficial for some students (Kapur, 2008; Kapur and Bielaczyc, 2012).

Finding 4: Students with Disabilities Recognize Unique Contributions They Can Make to Undergraduate Research, Owing to Their Unique Perspectives

Students with Disabilities Described Bringing a Unique Perspective to Research.

In our interviews, we also aimed to examine the ways in which students with disabilities bring particular assets or strengths to their research experiences based on their own unique traits, thoughts, and experiences as individuals with disabilities (López, 2017). Students described that they felt as though their disabilities gave them unique viewpoints and perspectives that influenced the ways in which they approached their research. In particular, some students described that they were able to provide a unique lens for solving problems in science that they would not have if not for their own lived experiences as individuals with disabilities. For example, Hugh described how his understanding of the patient perspective, given his own disability and breadth of experience with medical doctors, can help him with formulating research questions and his approach to problem-solving in research.

Moreover, Odette describes that her disabilities contribute to research because of the overall diversity she brings to the scientific research community and the unique perspectives that she has as someone with mental health and learning disabilities. She describes that she is able to “think outside the box” and has had other researchers tell her that they have not considered research problems or research questions in the same ways in which she considers them. This is consistent with other arguments that position individuals with disabilities to be some of our society’s best forward thinkers and problem solvers, because they encounter problems, obstacles, and challenges that require solutions at a greater frequency than those without disabilities (Emery, 2018).

Additionally, some students mentioned that traits and characteristics related to their disabilities can provide an advantage in conducting certain research-related tasks, although students also described how this can be challenging for their overall productivity in research. For example, as Tia described, she felt as though her anxiety gave her better attention to detail, which helped her avoid mistakes in the research process, even though it led to spending additional time working to get her tasks done. Another common example, illustrated by Skylar, is that students with attention deficit disorder (ADD) may be able to hyperfocus on certain tasks, such as data entry or data collection, whereas they may be unable to focus on completing tasks at all at other times.

These students’ perceptions support the notion that including individuals with disabilities and their perspectives has the potential to diversify the scientific community, could increase the objectivity of science, and may reduce the amount of bias that may exist in scientific reasoning (Anderson, 2006; Solomon, 2006; Intemann, 2009). For example, scientific researchers get to select the research questions that are asked and answered, defining what is important for their disciplines (Hrdy and Bleier, 1986; Wylie and Nelson, 2007). In addition, individuals with disabilities may also leverage their unique perspectives to identify limitations of existing models and propose new ones, incorporate a fuller range of alternative hypotheses and interpretations of data, and open up new lines of evidence (Intemann, 2009; Braun et al., 2018).

Some Students Reported a Greater Sense of Empathy and Understanding for the Process of Research because of Their Experiences with Their Disabilities.

In addition to feeling as though they bring unique perspectives and experiences to undergraduate research, several students noted that they specifically felt as though they brought a greater sense of empathy and understanding to the research process, participants in research studies, and fellow researchers. This was often particularly true for students whose research experiences involved working directly with human research subjects. Jesse, who conducts autism research, describes that his own motivation for wanting to do research is because he feels as though he has insights into the disabled experience that shapes how he approaches his research. For example, he notes that he has his own personal experience with autism.

Additionally, some students, such as Michael, noted that they feel more empathetic for their peers and other researchers within their research groups who may have disabilities.

There has been a broad critique of able-bodied individuals not understanding the challenges of students with disabilities (Dunn et al., 2012; Moon et al., 2012). One concrete benefit that could result from engaging more students with disabilities in UREs is the potential for them to serve as more culturally competent research mentors for students with disabilities, as future upper-level undergraduates, as graduate students, as postdocs, and as faculty (Eddey and Robey, 2005; Balcazar et al., 2009).

Recommendations for Research Mentors Looking to Make Undergraduate Research More Inclusive and Accessible for Students with Disabilities

In our interviews, undergraduate researchers with disabilities described elements of accessible and inclusive research spaces that have the potential to inform how research mentors structure their research experiences, which has allowed us to assemble the following recommendations:

• Recommendation 1. Provide students with flexibility in deadlines, meetings, and schedules. This could include having students work remotely or set their own work hours or providing options for students to attend a meeting via Zoom.

• Recommendation 2. Get to know students and understand their accessibility needs. One way to do this is to conduct check-ins for group access needs during lab meetings (Reinholz and Ridgway, 2021) or anonymously survey students on the overall accessibility of the lab.

• Recommendation 3. Self-assessment of the accessibility of research space. This could include consulting with DRC staff to determine how one could make current practices and research spaces more inclusive for individuals with disabilities.

• Recommendation 4. Advocate on behalf of students with disabilities. This may include communicating with DRC staff to see what is available for students with disabilities in research or serving as an additional voice for students seeking certain accommodations from the university. The onus of the responsibility for providing accommodations does not have to be solely on the mentor.

• Recommendation 5. Professional development on how to better support individuals with disabilities. One option is that mentors can encourage their research groups to participate in workplace trainings that raise awareness about the needs of students with disabilities (e.g., AccessZone).

Limitations

The students in both studies were recruited from life sciences undergraduate programs, and as such, there may be discipline-specific differences in student research experiences in the sciences. Future work should explore UREs in other science disciplines, as each discipline may present unique challenges for students. For example, some students in our study discussed experiences with fieldwork or computation that may be unique to the life sciences. Additionally, our studies primarily included students who reported learning disabilities, mental health disabilities, and chronic health conditions and did not include any students who identified as having vision loss. Future research could take a targeted approach to recruit students who have specific disabilities who were underrepresented in this study. However, in general, our interview sample was relatively representative of our survey sample, indicating that studies examining what prevents students with particular disabilities from engaging in research may be a needed first step.

Similar to any interview study, it is possible that students in this study experienced social desirability bias so that students may have given socially desirable responses to interview questions rather than responding with what was reflective of their true feelings (Bergen and Labonte, 2020). This could be particularly concerning, given that individuals with disabilities are a historically marginalized group who may be reluctant to identify their challenges or weaknesses (Logan et al., 2008; Merrill et al., 1997). While we tried to limit this by anonymizing their experience, individuals in our study may actually be underreporting and underestimating some of the challenges they have experienced in undergraduate research because of the hierarchical nature of research and concerns about anonymity. In addition, our conclusions are limited to students’ perspectives. As such, we did not identify an exhaustive list of the ways that students are challenged in, benefit from, or contribute to research. Additional interviews with stakeholders such as peers, research mentors, and DRC support staff would be needed to fully answer these questions.

CONCLUSION

Together, our data suggest that students with disabilities are underrepresented in life sciences UREs, and students with disabilities who do participate in research report that they experience challenges specific to their disabilities. According to the students interviewed, these challenges seem to only be mitigated if students reveal their disabilities and self-advocate for accommodations or identify solutions themselves. However, in addition to the array of benefits that all students can gain from engaging in research (Bauer and Bennett, 2003; Thiry et al., 2012; Adedokun et al., 2014; Daniels et al., 2016; Olimpo et al., 2016), this work also suggests that students with disabilities may garner unique benefits by using UREs to counteract the narrative that they cannot pursue careers in research. Importantly, undergraduate researchers with disabilities highlighted ways in which they brought assets to undergraduate research, namely, providing unique insights and being empathetic toward others. This work emphasizes the need to recruit undergraduate researchers with disabilities and retain them by providing more inclusive research environments.

FOOTNOTES

ACKNOWLEDGMENTS

REFERENCES