Models of Disability as Research Frameworks in Biology Education Research

INTRODUCTION

In western society, the concept of “normal” as it applies to human beings emerged in the nineteenth century (Davis, 2002). This included the idea that it is most desirable for bodies and cognition to fall within the average range of variation. The concept of “normal” led to a standard that made it compulsory for people to behave or appear as though they embody this average to participate in society (Thomson, 1997). This standard has shaped our modern notions of disability.

Disability has been defined in different ways, which are shaped by the model, or lens, that one adopts. Different scholars have defined disability as a physical or cognitive state of being that:

• impacts one's functioning in their daily life, often presenting needs that are considered to be nonstandard (World Health Organization, 1980; Schuntermann, 1996),

• creates a mismatch between one's abilities and the expectations placed on them (Union of the Physically Impaired Against Segregation, 1974; Thomas, 2004), or

• impacts their opportunity to fully participate in a given setting (Snyder and Mitchell, 2006; Toro et al., 2020).

These varied definitions make it clear that disability is highly contextualized, depending on how the given condition affects the experiences of the individual, and how they align with the expectations surrounding them. In addition to definitions, people have varying approaches to language about disabilities and disabled people. Throughout this review, we use identity-first language (for example saying “disabled students,” rather than “students with disabilities”). We chose this approach because the theoretical models we primarily draw on conceptualize disability as a verb, where a person becomes disabled due to factors that impact their experiences. Disability can be highly variable as context changes, and people with very similar experiences may have different perceptions of whether they have experienced a disability. Therefore, we have chosen to describe disability as an active process, rather than an attribute of a person. We acknowledge that many scholars, activists, disabled people, and other stakeholders prefer person-first language in order to place the emphasis on the humanity of the people being referred to (Dunn and Andrews, 2015).

Some communities labeled outside of the statistical average have also developed a cultural boundary. For example, many in the Deaf community share a cultural identity that is distinct from disability (Braun et al., 2017). Those identifying with Deaf culture may or may not also identify as disabled. Another example is the National Federation of the Blind, a community that creates a social dynamic in which blindness is simply a physical characteristic lacking any negative stigma, fostering an empowering identity (Colvert, 2000).

Scholars have conceptualized different “models” of disability which have shaped research directions and research questions about disability and disabled people. Based on our review of Disability Studies literature and Discipline-Based Education Research (DBER) literature, we have identified two models that have been most influential in shaping DBER: the medical model and the social model. In this review, we will explore how these predominant models of disability have influenced past research directions and describe opportunities for future research directions using the perspectives offered by each model. Our review does not encompass a comprehensive list of all ways scholars have conceptualized disability, but focuses on theoretical models that either have guided research questions or align with the expressed goals of research questions in recent DBER literature. Additionally, we will highlight the potential for disability theories deriving from feminist standpoint theory to guide future research in DBER. Throughout this review, we highlight how expanding the theoretical models that guide DBER scholarship on disability has the potential to move the field into new research directions.

The Medical Model of Disability

The medical model of disability, also known as the biomedical model, arose from the relationship between clinician and patient (Laing, 1971; Bury, 1997; Hogan, 2019). Within this model, a patient would describe a condition, usually causing them some kind of limitation or distress. A clinician would then aim to understand the physical factors contributing to the condition in order to provide a treatment. Importantly, the medical model specifically pertains to conditions that the patient and clinician both consider to be a disease or illness.

Psychiatrists noticed that relying entirely on biomedical expertise was not sufficient to understand illness, especially as it pertained to social issues outside of medicine. In 1956, Thomas Szasz, a practicing psychiatrist, cautioned against treating medical professionals as figures of authority on social issues (Szasz, 1956). In particular, Szasz expressed concern at the idea of applying a biomedical lens to legal matters, such as relying on a psychiatrist's expertise on mental and behavioral states to determine one's culpability in criminal cases. Szasz explained that linking a person's mental health to their culpability could be used to deny them agency. He additionally stated that “Scientific knowledge per se does not embody within itself any guideposts as to its ‘best’ or ‘most humanitarian’ utilization, much as we would like to believe this” (Szasz, 1956, p. 298).

In 1977, another psychiatrist named George Engel identified shortcomings of the biomedical model even in the context of medical treatment (Engel, 1977). Engel advocated for an updated medical model to rely not solely on the biological factors contributing to illness but to include psychological and social factors as well. Engel argued that, while biological factors are relevant, additional considerations such as trauma, living conditions, income, and social support are all essential for providing adequate treatment. While the importance of these factors was particularly apparent to those in psychiatry, Engel advocated for extending these nuances to every branch of medicine (Engel, 1977). Engel acknowledged the differences in contexts provided by individual patients’ experiences. He wrote that whether a condition should be classified as a disease depended on the experience of the patient, and that two people receiving the same diagnosis could have different enough experiences that the answer could vary between each of them. Engel's version of the medical model is used today to address various psychiatric concerns, such as substance abuse (Wangensteen and Hystad, 2022). In 1980, the World Health Organization (WHO) used the medical model to provide separate definitions for impairment versus disability (Schuntermann, 1996). According to the WHO, an impairment refers to a physical or mental characteristic that is an outlier from the statistical average, while a disability refers to limits in functionality resulting from the impairment. Today, the medical model is frequently referenced in disability scholarship and activism, affecting many of the policies that impact disabled people, including in education (Price, 2011; Dolmage, 2017; Hogan, 2019).

The Social Model of Disability

The need for a disability framework outside the scope of medicine led to the development of the social model of disability. In 1974, a British activist group known as the Union for the Physically Impaired Against Segregation (UPIAS) advocated for a different approach to understanding how disabilities present challenges to people (Union of the Physically Impaired Against Segregation, 1974, 1975). They referred to physical conditions that may affect one's health or day to day life as impairments, and defined disability solely as the social exclusion imposed on those with impairments. According to the social model, it is these imposed barriers that limit people's opportunities to participate in society, such as accessing education and employment opportunities. UPIAS used these definitions of disability and impairment to argue for increasing legal rights of disabled people and removing socially-imposed barriers. In the United States, the social model played a strong role in activist efforts. The social model corresponds with the disability rights movement, which led to legal rights such as the Americans with Disabilities Act, which protects against discrimination against disabled people by those offering public services, and section 504 of the Rehabilitation Act, which prevents schools receiving federal funding from discriminating on the basis of disability (Weber, 1994; Berghs et al., 2016). The social model of disability entered the scholarly conversation in 1991 when Mike Oliver incorporated it into his book on social work (Oliver, 1991), and then later incorporated it into courses and disability equality training (Oliver, 2004). He provided additional guidelines on how to apply the social model more broadly to research in the social sciences (Oliver, 2004). Alongside the medical model, the social model has been used in education research.

Medical and Social Model Influences on Past DBER

We reviewed past DBER literature on disability and disabled people to analyze how the medical and social model have driven the research questions being asked. To identify the appropriate literature base, we searched within three major science education journals, an education database (Education Source), and Google Scholar (Table 1). We selected search terms related to disability directly (e.g., disability), concepts that often overlap with disability (e.g., neurodiversity, universal design), as well as “STEM” and “undergraduate” to narrow the context (Table 1). We used inclusion criteria to identify papers that 1) are original empirical studies, 2) are contextualized in at least one STEM discipline in higher education, and 3) address research questions focused on either disability or neurodivergence. We identified and reviewed 26 papers, 20 of which were published within the last 5 years.

The medical and social models have influenced past DBER research by shaping the direction and focus of the research questions. In general, research questions based in the medical model focus on the disabled individual and research questions based in the social model focus on the environment surrounding and affecting the disabled individual. In an education context, a medical model approach responds to the particular expressed needs of individual students. These needs are addressed on a case-by-case basis (e.g., via accommodations) rather than changing the overall learning environment. This accommodation system requires disclosure from the students, as medical model solutions cannot be offered without knowing which students have which disabilities. This system presents students who have disclosed disabilities as being distinct from their classmates. On the other hand, the social model draws the focus of research questions to the disabling environmental factors. Solutions based in the social model include creating courses that are accessible to a broad variety of students with a wide range of needs, such as Universal Design for Learning (UDL). By focusing on eliminating barriers present in the overall learning environment, a social model approach shifts the focus to their environment and away from individual students. Implementing social model approaches does not require educators to identify particular students as disabled. Instead, social model solutions provide all students with the same resources.

In DBER, these models do not represent discrete categories of studies or research questions, but rather ends of a spectrum. Inherently, students are situated in some kind of learning environment, so nearly all education research is influenced to some degree by the social model. Disability Resource Centers (DRCs) are an institutional solution providing accommodations on an individual level. Research questions more strongly influenced by the medical model focus on support systems that are set up only for disabled students, such as university DRCs, accommodations, and other types of support that are restricted and targeted to disabled students.

Research questions about DRCs have focused on how they benefit students who access them and how students use accommodations (Gelbar and Madaus, 2021; Gin et al., 2021). Though based primarily in the medical model, these questions still have a social component because these processes are influenced by the surrounding environment. For example, Gelbar and Madaus (2021) examined how students’ use of their accommodations was influenced by whether the courses were in STEM or non-STEM disciplines, and by student factors, including gender, class standing, disability type, and number of disclosed disabilities. The focus on how students vary in their use of accommodations draws from the medical model, but the recognition that context, such as the type of course, may influence students’ need for resources draws from the social model. Similarly, Gin and colleagues (2021) examined how the changes brought about by COVID and the abrupt transition to online learning influenced students’ experiences accessing accommodations. For the most part, this study's focus on individual student accommodations utilized the medical model. Its focus on the COVID pandemic as a more largely disruptive event, however, is influenced by the social model, due to its recognition of how external factors can be disabling.

Along with research on how students use accommodations, the medical model is also present in research about how students self-advocate. Pfeifer and colleagues (2020) used an established conceptual framework to develop a model of self-advocacy for undergraduate STEM majors diagnosed with either attention deficit hyperactivity disorder (ADHD) or a specific learning disorder (SLD, an umbrella term including diagnoses previously known as dyslexia, dyscalculia, or dysgraphia). The framework defined self-advocacy as a skillset consisting of knowledge of one's own strengths and needs, knowledge of one's legal rights, communication, and leadership in advocating for others (Test et al., 2005). Pfeifer and colleagues characterized how these students reported using self-advocacy skills. This study takes an asset-based approach to the medical model by highlighting the self-advocacy skills that disabled students develop to navigate the system of accommodations. Their continued work, however, applied this model to research questions influenced more by the social model. Their following study (2021) investigated the factors in undergraduate STEM classrooms that impacted self-advocacy of students with ADHD and/or SLD.

Other DBER studies on disability based partially in the medical model examine support resources that are specifically for disabled students but are outside of the regulations of DRCs. The programs mentioned in these studies were designed only for disabled students, to support their persistence in STEM. Separating these students as a distinct group and aiming to mitigate their challenges on an individual basis contains aspects of the medical model, but the programs aimed to provide students with social support to counteract academic exclusion, a goal that is more reminiscent of the social model. One example is the MIND Alliance program, a comprehensive mentoring and training program specifically for disabled students from two Minority-Serving Institutions (Dutta et al., 2015; Cardoso et al., 2016). Researchers assessed how students benefitted from this program; their questions were based in the medical model because the program was specifically and exclusively for disabled students (Dutta et al., 2015; Cardoso et al., 2016). Other examples include researchers assessing how students benefit from participating in a virtual mentoring program (Gregg et al., 2016) and a peer mentorship program (Dunn et al., 2021), both specifically designed for disabled students.

Research questions based more strongly in the social model emphasize factors that are experienced by all students and how they specifically impact disabled students, such as student research experiences and active learning classrooms. Several studies have investigated disabled students’ experiences in research. For example, Gin and colleagues (2022) examined how disabled students in the life sciences are uniquely impacted by undergraduate research experiences and the challenges and opportunities that they experience in these contexts. They documented the strengths disabled students bring to their research projects and the ways they benefit from the experience. This research is largely based in the social model because the undergraduate research experience being studied was available to all students, not specifically disabled students, and thus a general part of the context that disabled students navigate. It is also partially based in the medical model because its focus includes the internal factors that contribute to disability (examples included challenges students experienced with chronic pain, mental health, focus, and attention). Similarly, Zaghi and colleagues (2023) examined the impact of undergraduate research experiences specifically for students with ADHD. This study asked students in an engineering Research Experience for Undergraduates (REU) program to compare their REU experience with their previous academic experiences. Because researchers focused on ways different environments created different learning experiences for the same students, the study strongly used the social model.

Another commonly studied evidence-based practice is active learning. Because active learning is becoming increasingly prevalent in college STEM courses, researchers have worked to understand how it impacts disabled students specifically. Expanding on their previous self-advocacy work, Pfeifer and colleagues (2023) investigated how different active learning practices influenced disabled students’ perceptions of their learning experiences, as well as their self-advocacy. These research questions align more with the social model since the focus is on the effects of particular teaching practices that are experienced by everyone in the class. Gin and colleagues (2020) aimed to answer similar questions by interviewing DRC directors about challenges experienced by disabled students in courses that used active learning practices, as well as changes to the accommodation process for courses using active learning. The focus on accommodations derives from the medical model since it includes the role of internal disabling factors in its analysis. The focus mostly remains, however, on the classroom practices that affect student experiences. Thus, this study draws heavily from the social model, while recognizing the role of the medical model in determining the resources available to students.

The social model has a very strong presence in education research focusing on UDL. Universal design draws from architectural principles following the Americans with Disabilities Act, in which buildings were designed to be accessible to as many different people as possible (Silver et al., 1998). UDL applies this principle to course design. UDL implores instructors to account for as many different access needs as possible when designing a course. UDL principles include providing multiple means of engagement, representation, action, and expression. For example, a course designed in alignment with UDL might provide content in multiple formats and give students multiple ways to be assessed on their work (Center for Applied Special Technology, 2024; Rose, 2001; Rose and Meyer, 2002). Disability scholars have encouraged instructors to use UDL principles to develop potential strategies to increase accessibility in their courses (Dolmage, 2015). The creators of UDL have provided examples of how they used it in a graduate level education course with a neuroscience-focused curriculum. For example, they explain that they give students the option to purchase a textbook that relies more heavily on visual information versus one that relies more on text, with both books providing the same information (Rose et al., 2006).

UDL has been featured in professional development created for college instructors in the sciences (Moon et al., 2011; Orndorf et al., 2022). DBER scholars have worked to provide UDL recommendations that are tailored to specific types of courses; for example Miller and Lang (2016) focus their recommendations on chemistry lab courses, while Balta and colleagues (2021) provide suggestions for implementing UDL in medical anatomy courses.

UDL recommendations inspired a study by Büdy and colleagues (2021), who developed an online nonmajors chemistry course and assessed the experiences of students who self-identified as neurodivergent. The authors defined neurodivergent as “having a brain that functions in ways that diverge significantly from the dominant societal standards of ‘normal.’” Neurodivergent identity also included those with diagnosed and undiagnosed learning disabilities. The course used a number of UDL principles. For example, they allowed students to use a variety of communication modalities, including verbal, written, symbolic (which included use of emojis, diagrams, formulas, drawing), and nonverbal (which included body language and facial expressions). Each week, students were asked to choose between participating synchronously or asynchronously and indicate that choice. The course also included a variety of assessment types and flexible deadlines.

The researchers compared the self-reported class experiences of students who identified as neurodivergent with those who did not. The UDL design and focus of the research questions on how disabled students experience their learning environment are heavily influenced by the social model.

Critiques of the Medical and Social Models

Many theorists have critiqued the medical model. Some disability theorists have claimed that in our current higher education system, accommodations are “something that always needs to be created, something that has a cost” (Dolmage, 2017, p. 53). They argue this structure positions disabled students not as rightful participants in the classroom, but as beneficiaries (Vidali, 2007). Instead, they advocate for considering the needs of disabled participants in academic settings at the outset, building access into their design (Oliver, 2004; Dolmage, 2017). Meanwhile, education researchers have noted that students face challenges not just due to their disabilities, but also stemming from the history that academic institutions have in excluding disabled students (Shpigelman et al., 2022). The social model of disability has arisen in response to these critiques, placing emphasis on the system and social structure that constructs disability.

The social model of disability has created fruitful avenues for research but has also been critiqued. One critique is that separating disability from impairment conflicts with the experiences of some disabled people, for example those with chronic conditions (Williams, 1999). For many, their embodied experience contributes to the factors that disable them, and they would still consider themselves disabled in a world where all socially inflicted barriers were removed (Morris, 1991; French, 1993). Others have argued that this separation defines disability entirely as oppression—in other words, that to be disabled is to be oppressed (Thomas, 1999; Shakespeare, 2013). UPIAS's list of “fundamental principles” went as far as to call for the “elimination” of disability (Union of the Physically Impaired Against Segregation, 1975, 3). In this way, the social model makes it difficult to acknowledge ways disability can contribute to one's identity and experiences (Thomas, 1999, 2004; Williams, 1999). Defining disability as inseparable from oppression leaves no room to imagine a better world in which disabled people are still present. According to these scholars, the social model positions a world with no barriers and therefore no disability as a goal, which excludes anyone for whom this would not be reality, even in the most idealized scenario (Bury, 1997; Shakespeare, 2013). Disability researcher Tom Shakespeare claims that the social model uses a simplistic explanation to emphasize the importance of creating better accessibility and inclusion for disabled people (Shakespeare, 2013). From Shakespeare's perspective, this simplicity is an effective entry point for change but does not fully communicate the nuances experienced by the community its creators sought to serve.

To address these critiques, Carol Thomas proposed the social relational model (Thomas, 2004). The social relational model has many similarities to the social model but emphasizes how impairments affect people's experiences. Thomas defined impairments as individual characteristics, including “physical, sensory, intellectual, cognitive, [and] behavioral” that have been “socially marked as unacceptable bodily deviation” (Thomas, 2004, p. 41). According to this definition, impairments themselves are embodied differences between people, and exist outside of social constructs. However, Thomas states that understandings of impairments, including from biological perspectives, are still shaped by social understanding. The social relational model of disability calls for a recognition of internal factors in conjunction with the social, and therefore defines disability as an interplay between these factors.

The social relational model has been used in a recent science education research study, to understand the characteristics that undergraduate physics and chemistry students with ADHD associated with their diagnoses, and how their courses’ structures were disabling or supportive of students with these characteristics (James et al., 2020). These research questions allowed for an exploration of how ADHD affected students outside of just disability, as a cognitive difference that students may experience in positive ways as well as negative. Yet it also emphasized the impact of disabling barriers on these students. Using the social relational model in DBER allows researchers to explore the factors that disable students in matters of both embodiment and environment.

Another model, known as the ecological-enactive model, has been proposed more recently (Toro et al., 2020). The ecological-enactive model aims to understand not just someone's embodied experience, but also their capacity to use affordances, which are aspects of one's environment that can allow for actions or uses that may benefit someone (Jurgens, 2023; Nešić, 2023; Schwab et al., 2022; Toro et al., 2020). The ecological-enactive model defines disability as a misalignment between someone's skillset, which they often form in response to their embodiment, and the affordances available to them. According to this model, whether people are disabled depends on how they are equipped to respond to their environment. Like the social relational model, the ecological-enactive model utilizes both the medical and social models to highlight the relationship between an individual and their surrounding environment. To our knowledge, this model has not yet been cited in education research, but since a spectrum of uses of the medical and social model are present in DBER, the ecological-enactive model could potentially be used in similar research contexts.

All the models we have discussed so far focus on the barriers that disabled people experience. Disability scholars have also noted, however, the importance of centering disabled perspectives more broadly, and recognizing how these perspectives vary (Dolmage, 2017). To address this, theorists have drawn from feminist standpoint theory, specifically the concept of social location.

Standpoint Theory Emphasizes the Importance of Social Location

Standpoint theory focuses on the relative position that individuals inhabit within a power structure. Using standpoint theory as a lens enables disability scholars to highlight the value in the unique knowledge that disabled people gain from their social positioning.

Standpoint theory has its origins in Marxist philosophy. Marx claimed that the proletariat, or the workers, gained knowledge based on their social position in relation to the bourgeoisie, or the ruling class (Marx, 1852). Marx's standpoint theory hinged on the idea that the firsthand knowledge of those in the subjugated group was necessary for conceptualizing a more equitable world.

In the 1980s, feminist theorists expanded standpoint theory to incorporate different personal factors, such as gender, race, and socioeconomic status, that contribute to one's position in prevailing social hierarchies (Hartsock, 1983; Rose, 1983; Harding, 1986; Haraway, 1988; Jaggar, 1989). The position someone occupies within the hierarchy is known as their social location, and a self-aware perspective of someone in a nondominant social location is a standpoint. These groups are “defined by… historical, cultural, social, and economic limits” (Young, 2005, p. 29). Standpoints are intersectional positions, and knowledge drawing from standpoints is specific to intersecting identities (Collins, 1998). Feminist theorists argue that reaching a self-awareness of one's social location is a conscious process, as those in dominant social locations have a material interest in preventing such self-awareness, even if they are not actively conscious of it (Hartsock, 1983). Thus, being able to draw on knowledge from one's standpoint is not an automatic state of being, but one that requires reflection and benefits from the presence of community (Hartsock, 1983; Haraway, 1988; Collins, 1998). Knowledge situated in a standpoint provides a foundation of understanding that is necessary to create a better system (Hartsock, 1983). Because there is a wide variety of standpoints, this also means that those in different subjugated groups must also listen to each other to truly envision a better world (Collins, 1998).

Disability as Social Location.

In 2006, Cultural Locations of Disability by Sharon Snyder and David Mitchell gave context to understanding social location in relation to disability. The book focuses on structures and institutions ostensibly created to support disabled people, beginning in the late nineteenth century. In contrast with UPIAS's definition of disability, Snyder and Mitchell “recognize disability as a site of phenomenological value that is not purely synonymous with the process of social disablement” (Snyder and Mitchell, 2006, p. 6). This definition views disability as a significant experience that orients one's standpoint, without solely defining disability as oppression. According to Synder and Mitchell, the position disabled people were placed in “precluded one's right to access modes of civic belonging that granted social privileges” (Snyder and Mitchell, 2006, p. 39). Snyder and Mitchell's historical account reveals how a system that prioritized people's capacity to produce a certain amount of labor, combined with a push toward adopting more scientific approaches, led to the objectification of disabled bodies. Thus, embodiment that interrupted one's capacity to provide labor for the economy was viewed as tragic. As a product of this viewpoint, both private and public services specifically designed for disabled people arose. To receive care from social services, one had to submit to removal from greater society and an economic status preventing them from securing independence (Snyder and Mitchell, 2006). Those receiving care or support from their family are similarly placed in a position of relying on them (Snyder and Mitchell, 2006; Siebers, 2008). This created a structure in which independence could not coexist with receiving support for disabilities. Within this structure, the disclosure of disabled people's needs detracted from outward perceptions of their personhood. Snyder and Mitchell argue that disabled people have been socially and culturally “dislocated,” since the same institutions offering support served to separate disabled people from the rest of society (2006). This system props up a broader cultural value, known as the ideology of ability.

Ideology of Ability.

The ideology of ability is a belief system that conflates perceived ability with personhood, therefore dehumanizing those who are seen as less able (Siebers, 2008). This makes it compulsory for people to display an acceptable range of ability for their humanity to be recognized (Dolmage, 2017). The ideology of ability constructs and places people in “levels” of ability, while cementing a belief that higher ability is inherently superior. For example, a recent CNN article describes people with a genetic trait that makes their sleep cycles shorter than average, about 5 to 6 h a night instead of the average 8 (LaMotte, 2021). The article assumes this trait is inherently advantageous, referring to it as a “gift.” The article references a memory task in which individuals with these shorter sleep cycles were compared with individuals with 8-h sleep cycles who had only gotten 5 h of sleep. The article also assigns those with shorter sleep cycles particular aspects of moral character, such as “determination.” Variance in sleep cycle length could be viewed in a neutral manner. The ideology of ability, however, leads to the conclusion that having the shortest sleep cycle possible is superior. Having less of a need to sleep and more time to spend on productivity becomes categorized as having a higher level of ability. Dominant perceptions of ability level are tied to an idealization of having the fewest needs and the highest productivity possible (Siebers, 2008).

Disability scholars claim that the ideology of ability is ingrained into social norms, and that “ability concerns natural gifts, talents, intelligence, creativity… we are always dreaming about it, but rarely thinking critically about why and how we are dreaming” (Siebers, 2008, p. 9). Cultural perceptions of ability are so entangled with our understanding of humanity, that the concept of ability becomes extensive and malleable. Ability is foundational to aspirational messaging within our culture, both on the individual and societal level. Conversely, within the ideology of ability, disability is defined in a very narrow way by one's specific limitations and has the effect of narrowing and limiting one's identity (Siebers, 2008).

The ideology of ability produces the prejudice known as ableism (Dolmage, 2017; Manalili, 2021). Ableism is not limited to impacting disabled people, as ableism also manifests as a pervasive emphasis on ability, to the point of glorifying people pushing themselves to the extreme (Dolmage, 2017).

Another consequence of the ideology of ability is the inclination to view disability in one domain as an advantage in another (Siebers, 2008). This inclination is well-meaning, as it motivates asset-based approaches and the acknowledgment of individuals’ strengths. However, it can pose a double-edged sword by promoting the idea that disabled individuals are only valuable if their disabilities are compensated for by “special” abilities. In this way, asset-based approaches to studying disability risk reinforcing the ideology of ability, since from this perspective, a disabled person's deservingness to be in a space relies on their disability presenting some kind of benefit. This gives disabled people a disproportionate burden to compensate for their presence (Dolmage, 2017).

Social Location Contextualizes Embodiment

Some of the strongest critiques of the social model of disability center around a need to understand the embodied experience of disabled people as being distinct from social barriers (French, 1993; Williams, 1999; Thomas, 2004). These critics have also turned to feminist literature on embodiment for answers (Siebers, 2008).

In her essay “Throwing Like a Girl,” Iris Young (2005) argues that social location impacts how people experience their bodies throughout their lifetimes. As the title suggests, she begins with the example of 5 year old children demonstrating a difference in how one throws a ball that seemed to relate to gender, with girls being less likely to fully extend their bodies before throwing (Young, 2005). Young points out that at this age there are very few physical differences between children of different genders or sexes that would explain this phenomenon, and instead links this difference to that of social location. She explains that those perceived as female or feminine are taught to carry themselves and interact with the world in a way that treats their bodies less as active agents, and more as objects to be protected (Young, 2005). This social conditioning impacts the way people interact with their surroundings and experience their bodies. The social conditioning an individual undergoes indicates their standpoint within society, creating an intersection between embodiment and standpoint theory.

The experiences that disabled people have with embodiment range greatly. Disability is a very diverse concept, and thus embodiment of disability is also very diverse. It would be useful for future study to delve further into the nuances of how different disabled people experience embodiment.

The Complex Embodiment Model of Disability.

Tobin Siebers’ (2008) model of complex embodiment synthesizes key ideas in standpoint theory, the ideology of ability, and embodiment. Complex embodiment is a perspective that recognizes disabling factors resulting both from one's environment and from the body (Siebers, 2008). This theory emphasizes how differences between bodies “belong to the spectrum of human variation, conceived both as variability between individuals and as variability within an individual's life cycle” (Siebers, 2008, p. 25). Complex embodiment posits that the embodiment and social location of disability shape one another, and analyzes how socially-imposed barriers reveal large-scale systemic values (Siebers, 2008). For example, if a course is taught in a pedagogically inaccessible way, one may conclude what kinds of students are being implicitly invited to participate in the space, and which students are not. Where the social model offers solutions for inaccessibility, the theory of complex embodiment explores the reason that lack of access was in place to begin with, and its role in reinforcing a particular hierarchy. This perspective “views the economy between social representations and the body not as unidirectional as in the social model, nor nonexistent as in the medical model, but as reciprocal” (Siebers, 2008, p. 25).

Potential Avenues for the Complex Embodiment Model in DBER.

Although to our knowledge complex embodiment has not yet been cited in DBER, it relates to many of the questions DBER scholars have asked and has the potential to guide future approaches. Its scope is distinct from the medical and social models because rather than centering on student needs, it would interrogate the social location communicated within learning environments. Hallmarks of a complex embodiment approach would be research questions that focus on how cultural values reveal a power structure that shapes disabled people's academic experiences. Research questions based in complex embodiment can also integrate ideas that relate to the medical and social models, as the power dynamic that places people in a certain social location is often impacted by interactions between internal and external disabling factors. In DBER, research questions focusing on the perspectives and experiences of instructors supporting disabled students, the impacts of cultural norms within STEM on disabled people, and barriers to the participation of disabled people in STEM all relate to this greater power dynamic.

We have gained insight about how instructors shape the social location of disabled students through studies that examine the impact of instructors’ perspectives (Love et al., 2014; Bettencourt et al., 2018; Shmulsky et al., 2018; Gokool-Baurhoo and Asghar, 2019; Goodwin et al., 2024). Instructors’ decisions create and reinforce social locations for their students by shaping their learning environments. Instructors themselves operate within a set social location determined by their academic institution and the cultures of their disciplines.

Some studies have focused on variation in instructors’ knowledge and perspectives toward disability. For example, some have characterized how STEM faculty describe their positive and negative experiences working with disabled students (Love et al., 2014). This research question highlights the way instructors’ perceptions impacted the power dynamic between instructors and disabled students. There has also been research exploring how STEM faculty conceptualize disabilities and understand the support needs of disabled students. This question reveals instructors’ perceptions of their own social locations, as well as about how STEM programs impacted disability (Bettencourt et al., 2018). Another study that took place at a liberal arts college they described as “serv[ing] students who learn differently” aimed to learn what college STEM faculty viewed were necessary skills for success in STEM fields, and what they perceived as particular strengths and challenges experienced by autistic students in STEM (Shmulsky et al., 2018). This question focused on how instructors conceptualized the values within their disciplines, and the extent to which they viewed those values to be compatible with the success of autistic students. Thus, the research questions emphasize the connection between an instructor's culturally informed perceptions and the social locations into which they place their students. The connection between instructors’ personal and overarching cultural values was further explored by Goodwin and colleagues (2024), who studied the extent to which instructors valued a responsibility to successfully provide accommodations to their disabled students. This research question examines how instructors’ values may echo the values of their discipline or institution, and how they ultimately affect the social locations of their students (Goodwin et al., 2024).

Studies focusing on instructor perspectives also reveal how institutional factors reinforce social locations of disabled students. Past DBER studies have focused on the resources available to instructors, tenure and promotion incentives, and the cultures of their institutions or departments. This includes studies that identified the resources STEM faculty needed to support the needs of disabled students (Love et al., 2014), as well as those focusing on the barriers and challenges experienced by science instructors in teaching and supporting students who had been diagnosed with learning disabilities (Gokool-Baurhoo and Asghar, 2019). Focusing on how instructors’ actions could be influenced by resources provided to them to serve their students’ needs shows the complexity of instructors’ roles. These research questions highlight how instructors may or may not have access to opportunities that are essential to their ability to support their disabled students, regardless of their own personal motivations and values. This scope allows researchers to focus on how disabled students become placed in a particular social location not just by instructors directly, but through factors that limit their instructors as well. Other research questions have examined how the tenure and promotion policies of the institution communicate values related to supporting disabled students, which influence instructors. Instructors, in turn, experience a conflict between any desire to spend time gaining this knowledge and the need to prioritize tasks that would help them to achieve tenure and promotion. This discrepancy reveals a structural issue, where in many institutions, gaining knowledge of disability is positioned as an extra task, rather than one central to their primary job (Bettencourt et al., 2018). Another recent study investigated the extent to which life sciences faculty at R1 institutions across the United States believed they could successfully provide accommodations to disabled students (Goodwin et al., 2024). This research question draws the focus to the overall power structure influencing instructors and the dynamic they create with their students. This question highlights the social location of life sciences instructors, and the impact it has on students’ being able to access accommodations.

Many studies have centered the impact of discrimination, ableism, and stigma on disabled students’ affective outcomes. These phenomena all result from the presence of the ideology of ability in STEM disciplines. DBER that reveals the stigma toward disability deconstructs the cultural norms present in STEM higher education. Recent studies focusing on STEM students’ anxiety reveal the impact that ableism has on students’ perceptions. Downing and colleagues (2020) identified the factors that increased and decreased the anxiety of community college students in active-learning biology courses. While the scope of this study was not limited to disabled students, participants who disclosed disabilities also discussed the impact of others’ perceptions of their disability on their anxiety. Busch and colleagues (2023) investigated the extent to which biology, chemistry, geosciences, and physics undergraduates experienced fear of negative evaluation. This included how teaching practices impacted fear of negative evaluation, as well as how fear of negative evaluation specifically impacted students with certain social identities, including disability. This research reflects complex embodiment by comparing the impact of different social locations on students’ mental health and motivations.

Other DBER has expanded on understanding of the extra mental and emotional labor placed on disabled people as they navigate the prejudices of others. One study, for example, investigated the perceptions of students and colleagues toward a dyslexic faculty member (Hiscock and Leigh, 2020). They first characterized how students in a first-year course that was foundational to both forensic science and chemistry responded to an instructor and their course before and after the instructor disclosed being dyslexic. They then explored how colleagues working in the same building as a dyslexic faculty member perceived dyslexia and dyslexic people. These colleagues included faculty, postdoctoral researchers, research fellows, and graduate students in biology, forensic science, physics, and chemistry. The researchers also examined the impact of a dyslexic instructor asking their colleagues to check their lecture slides for mistakes before using them. This focus reveals the impact that both students and colleagues have on a dyslexic faculty member's social location. It recognizes the potential for stigmatizing views held by both students and colleagues to affect the role occupied by dyslexic faculty members.

Another study investigated how undergraduate STEM majors who self-identified both as disabled and as LGBTQ+ described their college experiences, with a focus on their experiences with social connection or isolation, any times they experienced discrimination, and the resources and allies who helped them in those circumstances (Miller and Downey, 2020). They regarded these factors as contributing to the “climate” students experienced, which they sought to characterize. While climate arose from social attitudes regarding disability, it was also created by the barriers more explicitly present in expectations for success in these disciplines. Studies that examine these phenomena expose how the culture in STEM communities reinforces a social location for disabled people.

Studies that investigate barriers to the success and participation of disabled people in different STEM disciplines show how ableist mechanisms have been codified into the disciplines themselves. These include factors that contribute to disabled students being encouraged to leave STEM disciplines, “weed out” practices in gateway STEM courses, and normative expectations exemplifying success.

One such study explored the experiences and future goals of disabled students in higher education (Palan, 2021). Their sample represented students who had been diagnosed with visual impairments, mobility impairments, hearing impairments, or speech impairments. They examined how students’ access to courses and career opportunities were affected by systemic exclusion, available information, internalized oppression, pedagogy, and employment opportunities. This included how students’ opportunities to pursue STEM disciplines were impacted by external perceptions of their disabilities. One student with a visual impairment was explicitly forbidden by their academic institution from pursuing math and physics and was instead instructed to study languages.

Recent DBER has investigated the impact of institutional and disciplinary values on the experiences of neurodivergent students. Neurodiversity has been defined as “a range of neurological variations such as, ADHD, autism spectrum disorder, dyslexia, dysgraphia, dyscalculia, and other learning differences that are widely labeled and understood as disabilities” (Syharat et al., 2023). One such study explored the factors that graduate students in STEM disciplines who self-identified as neurodivergent perceived contributed to success, and how their perceptions of success had been influenced by externally communicated standards, such as the opinions of their advisors or policies within their institutions (Syharat et al., 2023). They also examined how neurodivergent graduate students understood their own neurodiversity, and how they perceived their neurodiversity aiding in or conflicting with the standards of success being communicated to them. These research questions reflect complex embodiment by emphasizing the impact of values expressed in academic institutions and disciplines on students’ perceptions of their belonging. Whether students perceive success as aligning with their own abilities impacts their understanding of their social location and potential to participate in STEM. When the power structure prevents members of a certain community from participating in STEM disciplines, these fields lose the contributions of their perspectives. Exclusion of disabled people from STEM disciplines affects the social locations of disabled people at a greater societal level.

Epistemic Injustice

Epistemic injustice is not a model of disability but has the potential to guide the goals of future DBER study on disability. Epistemic injustice describes how the stratification of value placed on different knowledge sources creates a power structure where those most left out of mainstream society are kept from accessing knowledge that reflects their experiences or being perceived as trustworthy holders of knowledge (Jones, 2002; Fricker, 2007). As epistemic injustice deals with knowledge and value placed on knowledge, it is inherently deeply associated with the types of research questions scholars choose to ask and who engages in the process of generating new knowledge.

There are two types of epistemic injustice: testimonial and hermeneutic injustice (Fricker, 2007). Testimonial injustice occurs when, because of discrimination, a certain person's knowledge is seen as less credible. This is often impacted by race, class, and gender, in addition to disability status. Hermeneutic injustice occurs when someone is kept from knowledge that would help them define their experiences, or there is a lack of terminology circulated to put certain experiences into words. This can often prevent people from realizing an experience they had related to their social location, rather than just being an isolated incident. For example, before language referring to sexual harassment was well known in the workplace, people who experienced it did not have terminology to report that behavior. It was through feminist activists recognizing each other's accounts as being one unified phenomenon, and then organizing for the legal recognition of sexual harassment as a category, that led to its widespread recognition (Brownmiller, 2000).

Addressing hermeneutic injustice relies on this shift in understanding—from believing one's experience to be isolated to understanding it as a shared experience specifically impacted by social location (Fricker, 2007). People experiencing hermeneutic injustice have described a sense of stigma that makes them feel like they cannot talk about certain experiences they have had, and an inclination to blame themselves for those experiences (Jones, 2002). In learning that there is terminology for those experiences and therefore others share them, they describe a sense of revelation, and the opportunity to break their silence and sense of isolation.

One example of hermeneutic injustice impacting a community in which many members identify as disabled is the concept of autistic inertia. The term “autistic inertia” has existed as informal terminology within the autistic community, but only recently entered the scholarly conversation, in an interview study focusing on autistic adults (Buckle et al., 2021). Autistic inertia describes a difficulty autistic people may have in either initiating or pausing a task. This causes people to either go for long periods of time without beginning a task they fully intend to do, or to struggle to stop, even for essential things like eating. Participants described autistic inertia as one of the most salient difficulties they experience, but while they were aware that there was a large amount of research focusing on autism, little to none of it addresses this topic, one that is highly relevant to the daily lived experiences of this population (Buckle et al., 2021). Participants noted that instead, there is quite a bit of autism research focusing on topics that may be of more interest to those interacting with or caring for autistic people. This suggests that formal knowledge about autism is situated in a power dynamic that often prioritizes nonautistic people.

Hermeneutic injustice creates an obstacle for disabled people because the lack of studies true to their experiences leaves them with limited tools to communicate their needs. Because people struggling to relay their experiences then become viewed as less credible to others, hermeneutic injustice can also create testimonial injustice. Because knowledge itself is placed within a power dynamic, research has the potential to center the knowledge and experiences of the disabled community, making DBER a powerful tool in addressing epistemic injustice.

DisCrit, a theoretical framework created to highlight the intersectionality between both racial and ability-based oppression, presents an opportunity for researchers to intentionally combat hermeneutic injustice (Annamma et al., 2013, 2018; Connor et al., 2015). The tenets of DisCrit emphasize the importance of centering counternarratives, which are narratives told from the perspectives of minoritized people (Matsuda, 1987; Solorzano and Yosso, 2001). DisCrit can be used to inform research methodology and can be compatible with research questions drawing from any model of disability that we have mentioned.

Opportunities for Future Work

There are many opportunities for each of the models of disability to drive future research. Future uses of the medical model could include personal firsthand accounts of the experiences of disabled people. It would be useful for there to be more research spanning a diversity of experiences with particular disabilities. Engel's version of the medical model allows us to recognize that social factors can still impact disabling conditions that are not located externally. Using the medical model in future research can give people the opportunity to describe their experiences on an individual basis. The medical model is especially relevant for individuals with conditions they would personally refer to as illnesses.

The medical model is also ingrained into the system of accommodations that disabled students must navigate. Future studies could take an asset-based approach by further detailing the strengths and skills that students gain by navigating this system. This research avenue could draw from Community Cultural Wealth, a framework that describes strengths that marginalized students gain by navigating a social system that was not designed for them (Yosso, 2005).

The social model, and specifically the social relational model, can be used to expand on the research on UDL and issues of accessibility in STEM education. The social model can allow us to further characterize ways that one's surroundings may disable them in academia and in the sciences. Future research may aim to navigate conflicts between different people's accessibility needs, and how we can create environments that support these differences without further marginalizing anyone.

Research using a complex embodiment model would focus on the situated knowledges of disabled people both as individuals and as a community. Future research may examine how academic environments and pedagogical practices communicate the social location of disabled people. The cultures of different academic disciplines may also influence this social location.

Theoretical models can also be combined. Using the complex embodiment model as a research framework would encourage future research to focus on the ways in which disabled people can be given the power to shape spaces in STEM, thus emphasizing their contributions. This model could let us analyze people's embodied experiences and the varying accessibility of different environments through the lens of social location. Studies focused on embodiment could examine embodied experiences outside of just disablement, aiming to represent variability between bodies to a fuller extent. Studies focused on access could recognize how the ideology of ability currently works against the presence and participation of disabled individuals in academic and professional settings.

To address epistemic injustice, it is important that the group of interest feels that their experiences are appropriately represented in the research, and that researchers pursue questions that the community of interest feels are pressing issues. Furthermore, research could counter hermeneutic injustice by focusing on how disabled people form community and support one another, thus helping people recognize shared experiences.

CONCLUSION

Models of disability provide lenses that shape the way disability and disabled students are conceptualized, viewed, and valued. These models have informed the types of questions researchers have asked, and thus the type of knowledge generated about disability and disabled students. In this essay, we have argued that expanding the theoretical models that guide DBER scholarship on disability has the potential to move the field into new research directions.

We began by reviewing research and knowledge gained from the medical model and social model. We then highlighted the potential for feminist standpoint theory to guide theoretical frameworks that align with the expressed goals of recent DBER literature focusing on disability. Standpoint theory provides the concept of social location and has shaped the complex embodiment model of disability. Additionally, epistemic injustice can serve to direct the goals of future research in producing knowledge beneficial to the disabled community. We have highlighted and proposed opportunities for future research using the lens of each of these models.

REFERENCES