Introduction
This paper advocates for a re-examination of research ethics in applied linguistics (AL) and second language acquisition (SLA), with a focus on the ethical implications for members of the disabled community.Footnote 1 Historically, human rights violations concerning research ethics and individuals with disabilities have been well-documented (Barnes & Sheldon, Reference Barnes, Sheldon and Florian2007; Dolmage, Reference Dolmage2017; Oliver, Reference Oliver1992). Much of this history can be traced back to medical experimentation during Nazi Germany (Arstein-Kerslake et al., Reference Arstein-Kerslake, Maker, Flynn, Ward, Bell and Dengener2020; Good, Reference Good and Iphofen2020). Post-World War II, these abuses continued through involuntary institutionalization and non-consensual experimentation on individuals in psychiatric hospitals (Burghardt, Reference Burghardt2017). More recently, such violations have included state-sanctioned, forced sterilization under nationally mandated policies in countries such as Canada (Leung, Reference Leung2012) and the United States (Stubblefield, Reference Stubblefield2007). These types of practices have continued well into the 21st century in countries such as Canada, China, Mexico, and Peru (Human Rights Watch, 2011; Senate of Canada, 2021). Furthermore, these injustices disproportionately target disabled people whose identities intersect with other historically marginalized groups (Cour, Reference Cour2013). These are just a few examples of human rights violations that also breach core ethical principles in research, such as respect, informed consent, and privacy (Good, Reference Good and Iphofen2020).
Although these historical abuses have been widely condemned, their legacy continues to shape contemporary research practices. This may occur in less overt, but still ethically troubling ways. Top-down ethical guidelines in the social sciences were established to protect the rights and safety of disabled people in research. However, merely following these guidelines can sometimes lead to further marginalization. Specifically, research in various disciplines often excludes disabled people from participating, while other studies may implicitly reinforce a deficit-based view of disability through different stages of the research process (Oliver, Reference Oliver1992; Van Goidsenhoven & De Schauwer, Reference Van Goidsenhoven and De Schauwer2022; Walsh et al., Reference Walsh, Stead, Sawyer, O’Shea, Watson and Anderson2024). Consequently, these practices produce research that is either not relevant to members of the disabled community or that reinforces misunderstandings and misinformation about their lived experiences.
Such issues may also be observed in the fields of AL and SLA, where ethical concerns for disabled participants remain underexplored. Traditionally, AL and SLA research involving members of the disabled community has examined the cognitive and affective dimensions of neurodiverse language learners’ experiences (Kormos, Reference Kormos2020). This research tends to compare the perceived cognitive differences in ability between non-disabled and disabled language learners (e.g., Crombie, Reference Crombie1998; Geva & Massey-Garrison, Reference Geva and Massey-Garrison2013; Helland & Kaasa, Reference Helland and Kaasa2005). Other studies have focused on potential pedagogical interventions that support the language learning of disabled learners (e.g., Nijakowska, Reference Nijakowska, Kormos and Kintra2008; Pfenninger, Reference Pfenninger2015) or have investigated learners’ aptitude and/or cognitive ability to learn an additional language (Borodkin & Faust, Reference Borodkin and Faust2014; de Bree & Unsworth, Reference de Bree and Unsworth2014; Sparks et al., Reference Sparks, Ganschow, Pohlman, Skinner and Artzer1992).
Purposefully or not, this line of research often adopts the deficit model of disability, which views disabilities as “deficiencies and a series of obstacles in individuals’ lives” (Kormos, Reference Kormos2017, p. 129). Although usually well-intentioned, these studies can inadvertently reinforce normative assumptions about how and when language learning should happen. For instance, in research examining the link between dyslexia and literacy skills in young learners’ first language (L1) and additional languages (L2), deficit-based labels such as “poor decoders” are used to describe learners with dyslexia who do not meet standardized literacy benchmarks (e.g., Elwér et al., Reference Elwér, Keenan, Olson, Byrne and Samuelsson2013; Geva & Massey-Garrison, Reference Geva and Massey-Garrison2013; Hagtvet, Reference Hagtvet2003). Similarly, Henner (Reference Henner, Hudley, Mallinson and Bucholtz2024) criticizes particular approaches to studies in pragmatics for framing autistic people’s language practices as “deficient” or “impaired” against normative definitions of pragmatic competence. In these cases, such labels not only pathologize differences but also reinforce exclusionary assumptions about what constitutes successful language learning. With a focus on narrowly defined linguistic benchmarks, disabled learners are positioned as inherently deficient when they fail to meet or conform to these standards.
This framing echoes eugenics-era principles that classify individuals based on their divergence from constructed norms of intelligence, language use, and communicative behavior (Arstein-Kerslake et al., Reference Arstein-Kerslake, Maker, Flynn, Ward, Bell and Dengener2020). As a result, disabled people are positioned from the outset as in need of remediation, rather than as complete and capable humans in the spaces they inhabit. This framing thus reinforces ableist assumptions embedded in AL and SLA research. At the same time, it raises serious ethical concerns about how disabled people are objectified, instrumentalized, and subjected to scrutiny in the name of social science research. Considering these gaps in prominent SLA frameworks and approaches to research design, ethical considerations for members of the disabled community have also seldom been discussed in the AL and SLA literature. Such considerations may include: ensuring informed and ongoing consent that accounts for diverse communication needs (e.g., Bigelow & Pettitt, Reference Bigelow, Pettitt and De Costa2015), safeguarding participants’ rights to define how their identities and experiences are represented (e.g., Okada, Reference Okada, McKinley and Rose2016), designing accessible research processes and materials (e.g., Nuwagaba & Rule, Reference Nuwagaba and Rule2015), and prioritizing reciprocal relationships that recognize disabled participants as co-constructors of knowledge rather than as the object of study (e.g., Henner, Reference Henner, Hudley, Mallinson and Bucholtz2024).
To advance the field and center these vital ethical considerations for disabled people, we propose an emancipatory, rights-based framework for research in AL and SLA. This framework draws on the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (Office of the United Nations High Commissioner for Human Rights [OHCHR], 2006). It includes the principles of respect, representation and reciprocity, informed consent, privacy and confidentiality, and accessibility. To clarify these principles, we first briefly review previous work on research ethics in AL and SLA. This review demonstrates how top-down ethics guidelines can be insufficient or conflict with a relational approach to working with members of the disabled community. Next, we discuss how disability scholars have challenged historical injustices affecting disabled people, especially those involved in institutional research. Finally, we introduce an emancipatory, rights-based framework for research ethics in AL and SLA. When illustrating the principles of this framework, we incorporate relevant examples from AL and SLA scholarship. Ultimately, while this framework centers on the rights of disabled people, we argue that these principles can promote more inclusive, equitable, and beneficial research practices for all. These practices challenge exclusionary norms and shift ethics toward accessibility, which benefits other historically marginalized groups as well.
Situating research ethics in AL and SLA
Discussions of research ethics in AL and SLA have proliferated in the literature through published volumes (e.g., Barnard & Wang, Reference Barnard and Wang2021; Consoli & Ganassin, Reference Consoli and Ganassin2023; De Costa, Reference De Costa and De Costa2015; De Costa et al., Reference De Costa, Rabie-Ahmed and Cinaglia2024; McKinley & Rose, Reference McKinley and Rose2016) and special issues (e.g., Isbell & De Costa, Reference Isbell and De Costa2024; Kouritzin, Reference Kouritzin2011; Kubanyiova & Creese, Reference Kubanyiova and Creese2024). Individual articles have also explored various “ethical gray-zone issues” (Wood et al., Reference Wood, Sterling, Larsson, Plonsky, Kytö and Yaw2024) that are not well addressed by top-down guidelines mandated by Institutional Review Boards (IRBs) (e.g., De Costa, Reference De Costa2014; Koulouriotis, Reference Koulouriotis2011; Kubanyiova, Reference Kubanyiova2008; Ortega, Reference Ortega2012). When examining AL and SLA scholarship involving equity-deserving groups, a recurring theme is the tension between top-down research ethics policies and the everyday ethical dilemmas that emerge in local research contexts. This body of literature often frames the discussion of research ethics by distinguishing between macroethics and microethics. These terms initially emerged through the work of Komesaroff (Reference Komesaroff and Komesaroff1995) regarding medical ethics and Guillemin and Gillam’s (Reference Guillemin and Gillam2004) work on qualitative research, respectively. Both subsequently informed Kubanyiova’s (Reference Kubanyiova2008) foundational discussion of research ethics within AL. On one hand, macroethics refers to researchers’ compliance with IRBs, as well as logistical considerations related to research design and ethics applications (De Costa, Reference De Costa and De Costa2015). In contrast, microethics concerns the ethical considerations that occur on the ground during the research process. By contrasting top-down research ethics policies with microethical considerations previously discussed by scholars in AL and SLA, we highlight three important themes that are especially relevant to members of the disabled community: relevance of research, respect, and responsibility.
Macroethics
While governing bodies and IRBs may implement the core principles of research ethics differently based on the local context, top-down policies usually focus on respecting human dignity. For instance, according to Canada’s Social Sciences and Humanities Research Council, research ethics are based on three main principles encompassing human dignity: respect for persons, concern for welfare, and justice (Government of Canada, 2023). Regarding the first principle, ethical issues related to respect for persons generally involve respecting individuals’ autonomy before, during, and after the research process. Practically, this means ensuring the right to “free, informed, and ongoing consent,” and recognizing potential barriers to informed consent (Government of Canada, 2023). Similarly, the principle of concern for welfare covers participants’ quality of life, which can be understood as a standard that considers individuals’ safety and health in the physical, mental, and spiritual sense. Thus, this principle emphasizes minimizing risks to participants and maintaining confidentiality. Lastly, justice is described as “the obligation to treat people fairly and equitably” (Government of Canada, 2023), and it addresses concerns about vulnerability and the distribution of power. Overall, these core principles align with our emancipatory, rights-based research ethics framework, emphasizing the importance of upholding human dignity for disabled people.
Microethics
IRBs’ guiding principles provide essential governance on ethical conduct in research and ensure compliance with these policies. However, scholars have pointed out the limitations of relying solely on top-down policies for navigating ethical dilemmas. The focus on procedural ethics, as seen in IRBs and research methods books for novice researchers, was arguably influenced by the “ethics creep” (Haggerty, Reference Haggerty2004) of the 1990s. This phenomenon involves IRBs attempting to create increasingly comprehensive, universal guidelines for researchers, despite the growing diversity of research contexts and ethical challenges faced. As noted by Haggerty (Reference Haggerty2004) and other scholars in the social sciences across a broad range of contexts (e.g., Hammett et al., Reference Hammett, Jackson and Bramley2022; Taylor et al., Reference Taylor, Taylor-Neu and Butterwick2020; Walsh et al., Reference Walsh, Stead, Sawyer, O’Shea, Watson and Anderson2024), this has led to tensions between macroethics and microethics. For example, both Egido and De Costa (Reference Egido and De Costa2022) and Taylor et al. (Reference Taylor, Taylor-Neu and Butterwick2020) criticize their nationally-mandated IRBs (in Brazil and Canada, respectively) for applying a one-size-fits-all medical model of research ethics to social sciences and humanities research. This results in what Taylor et al. (Reference Taylor, Taylor-Neu and Butterwick2020) describe as trying to “square the circle” while engaging in community-based research (p. 57). Similarly, while working with young people with cerebral palsy, Walsh et al. (Reference Walsh, Stead, Sawyer, O’Shea, Watson and Anderson2024) describe conflicts between their Australian IRB’s requirement for detailed pre-approval research protocols and the need for flexible, responsive, and innovative research methods.
Researchers in AL and SLA also face similar challenges. Past discussions of macroethics and microethics have included: balancing competing responsibilities to diverse stakeholder groups such as students, teachers, school staff, and project funders (Kangas, Reference Kangas, De Costa, Rabie-Ahmed and Cinaglia2024); managing tensions between safeguarding participants’ rights and engaging in anti-racist advocacy work (Lee, Reference Lee2011); and making decisions about transcription and analysis methods to better represent participants’ diverse languaging practices (e.g., Bernstein et al., Reference Bernstein, Bhattacharya, Johnson, De Costa, Rabie-Ahmed and Cinaglia2024; Bigelow & Pettitt, Reference Bigelow, Pettitt and De Costa2015). While very little of the research ethics literature in AL and SLA has explicitly addressed the needs of disabled participants (e.g., Bernstein et al., Reference Bernstein, Bhattacharya, Johnson, De Costa, Rabie-Ahmed and Cinaglia2024; Kangas, Reference Kangas, De Costa, Rabie-Ahmed and Cinaglia2024; Okada, Reference Okada, McKinley and Rose2016), there are specific examples of tensions between macroethical and microethical concerns that impact disabled people.
For example, a key consideration in research ethics that pertains to members of the disabled community involves the relevance of research for participants and other stakeholders. This has been a prevalent concern for instructed SLA research and its applicability to real-world teaching contexts, prompting scholars to emphasize social utility (Ortega, Reference Ortega2005) and greater collaboration among stakeholders (Spada, Reference Spada2005) in research. Ortega (Reference Ortega2012) expanded this discussion by stressing the need for SLA research to involve historically underrepresented learners who face various forms of oppression, noting that “the most dire consequence is that when the field does not investigate some learner populations, it does not serve them either” (Ortega, Reference Ortega2012, p. 220). Although such discussions of relevance have rarely addressed disabled language learners and users, the prevalence of normative research practices discussed earlier highlights the underrepresentation of disabled learners in AL and SLA research.
The issue of relevance for disabled language learners can also be analyzed through concerns related to data preparation and interpretation. As Henner (Reference Henner, Hudley, Mallinson and Bucholtz2024) explains, disabled learners’ non-normative communicative practices are often labeled with deficit-based terms such as “disordered language” or “specific language impairments” in educational settings. This underscores the challenge of viewing and labeling communicative practices as variation rather than deviation, and this can lead to ethical considerations about how the language use of disabled participants is represented in transcribed data. For example, Bernstein et al. (Reference Bernstein, Bhattacharya, Johnson, De Costa, Rabie-Ahmed and Cinaglia2024) recounted their experiences working with young children using signed languages and alternative communication (AAC) devices. In this account, they highlighted the ethical dilemma of using transcription conventions that failed to capture their participants’ communicative practices adequately. In one case, Bernstein et al. (Reference Bernstein, Bhattacharya, Johnson, De Costa, Rabie-Ahmed and Cinaglia2024) transcribed the language of Kalika, a young girl with Rett syndrome, and questioned the normative distinctions between intelligible and unintelligible speech; distinctions based on sounds that form recognizable words. In response to this limitation in traditional transcription practices, Bernstein et al. (Reference Bernstein, Bhattacharya, Johnson, De Costa, Rabie-Ahmed and Cinaglia2024) developed an alternative transcription approach to better reflect how Kalika communicated through sounds made with her vocal cords. Therefore, ethical concerns regarding relevance for disabled learners also involve how researchers interpret and depict their communicative practices during various stages of research and publication.
An additional key microethical consideration involves respect and responsibility. Prior scholarship in social sciences has addressed this issue, especially through critiques of labeling marginalized research participants as “vulnerable” or “high risk” in a static and homogenous manner (e.g., Aldridge, Reference Aldridge2014; Luna, Reference Luna2009; Mayo, Reference Mayo2017; Nuwagaba & Rule, Reference Nuwagaba and Rule2015; Perry & Mallozzi, Reference Perry, Mallozzi, Bigelow and Ennser-Kananen2015). For instance, Perry and Mallozzi (Reference Perry, Mallozzi, Bigelow and Ennser-Kananen2015) discuss policies from certain IRBs in the U.S. that labeled participants who speak English as an additional language as “vulnerable.” More specifically, they explained that such labels can create a paternalistic dynamic between researchers and participants (Perry & Mallozzi, Reference Perry, Mallozzi, Bigelow and Ennser-Kananen2015). This reinforces the subject-object, researcher-researched relationship, which has historically marginalized members of the disabled community in research. Similarly, Taylor et al. (Reference Taylor, Taylor-Neu and Butterwick2020) critique the “vulnerable person” label used in community-based research, arguing that “the artifactual structure of the REB [IRB] form preserves an ideologically enshrined hierarchy between university and community as knowledge-holders” (p. 66). When working with risk-averse IRBs, this categorization of vulnerability can exclude members of the disabled community from participating altogether (Walsh et al., Reference Walsh, Stead, Sawyer, O’Shea, Watson and Anderson2024). This issue further underscores the importance of research relevance for disabled people, as empirical work often overlooks their perspectives and lived experiences.
Revisiting Kubanyiova’s (Reference Kubanyiova2008) discussion of microethics, she suggests the ethics of care model (Haverkamp, Reference Haverkamp2005; Hegeland, Reference Helgeland2005) as an alternative approach to conducting AL research. This model highlights the inherently relational nature of working with participants in participants. Moreover, this emphasis on relationality challenges static labels such as “vulnerable persons” and encourages researchers to practice ethics that respond to the individual needs of participants within their local context (Haverkamp, Reference Haverkamp2005; Kubanyiova, Reference Kubanyiova2008). For example, Okada (Reference Okada, McKinley and Rose2016) described how she resisted IRBs’ “vulnerable persons” label during her narrative investigation of people’s illnesses and disabilities. Throughout Okada’s research exploring embodied narratives of disabled women living in Japan with chronic illnesses, the participants viewed the study as an opportunity to educate the public about their invisible—and often misunderstood—disabilities and chronic illnesses. As the participants were highly motivated to inform the public about their lived experiences, Okada (Reference Okada, McKinley and Rose2016) respected their desire to continue interviews even when they were not feeling well. As she explained, “while it was an ethical obligation to take care of my participant, it was also a moral responsibility for me not to treat her as someone incapable of making her own decisions” (Okada, Reference Okada, McKinley and Rose2016, p. 128). Therefore, Okada demonstrated both respect and responsibility for her participants by challenging the common portrayal of disabled individuals as lacking agency and autonomy in research.
To summarize, while there is still minimal scholarship encompassing research ethics and disability within the fields of AL and SLA, scholars have shown the importance of navigating tensions between macroethics and microethics to enhance the relevance of research, as well as respect and responsibility for members of the disabled community. To build upon these narrative accounts of important ethical moments during research, we offer a framework that centers the rights of disabled people in AL and SLA research, and also addresses different forms of ableism that may be encountered during different stages of the research process.
Disability and research ethics
The World Health Organization (2023) estimates that 1.3 billion people, or 16% of the global population, have some form of a disability. Despite this significant portion of the population, discussions about research ethics in AL and SLA have largely overlooked the rights, perspectives, and experiences of disabled people. This gap reveals a deeper structural issue in how deficit-based research practices have led to disabled participants being treated as objects of study and regarded as inferior to their non-disabled counterparts (Barnes & Sheldon, Reference Barnes, Sheldon and Florian2007; Dolmage, Reference Dolmage2017; Oliver, Reference Oliver1992). As noted earlier, top-down IRB protocols tend to prioritize procedural compliance over meaningful inclusion. Moreover, these protocols, which are heavily influenced by medical research, implicitly reflect underlying assumptions of medical and rehabilitation models of disability (Goodley, Reference Goodley2017). In essence, these models primarily view disability as an individual deficit or pathology to be treated, corrected, or accommodated against normative non-disabled standards (Connor et al., Reference Connor, Gabel, Gallagher and Morton2008, Reference Connor, Ferri and Annamma2016). Conversely, the social model posits disability as a socially constructed and politically mediated identity. Moreover, it asserts that disabilities are not deficiencies and also challenges discourses that portray disability as something tragic or in need of fixing (Stone & Priestley, Reference Stone and Priestley1996).
Despite advances in scholarship that center the social model and other justice-oriented frameworks for disability, deficit-based research practices rooted in the medical model persist. As a result, the rights of disabled people are repeatedly violated in the pursuit of “scientific knowledge through human experimentation” (Nelson Bryen, Reference Nelson Bryen2016, p. 53). Arstein-Kerslake et al. (Reference Arstein-Kerslake, Maker, Flynn, Ward, Bell and Dengener2020) remind us that “antiquated research practices continue to marginalize disabled people by excluding them from research; inadequately remunerating them for participation in research; undertaking research that assumes difference; and not including their voice in the leadership, design, or implementation of research” (p. 412). For example, in Australia, AAC users are often excluded from research, even when studies focus on disability (Walsh et al., Reference Walsh, Stead, Sawyer, O’Shea, Watson and Anderson2024). This exclusion results in further marginalization and misconceptions about their lived experiences, as research-generated knowledge is less likely to be relevant to AAC users. In research related to AL and SLA that “assumes difference,” Henner (Reference Henner, Hudley, Mallinson and Bucholtz2024) notes that some areas of pragmatics tend to concentrate on “remediating” autistic individuals’ language practices. As explained by Henner, this line of research focuses on intervention therapies that are often led by non-disabled researchers with minimal input from autistic people. Similarly, in Deaf Studies, scholars have criticized school-based interventions that promote language deprivation among deaf and hard-of-hearing children by favoring spoken languages over signed languages, thereby hindering learners’ full development of their first language during early critical years (e.g., Lillo-Martin & Henner, Reference Lillo-Martin and Henner2021; Murray et al., Reference Murray, Hall and Snoddon2019). In this way, certain areas of study portray Deaf and hard-of-hearing students as needing rehabilitation into the hearing world, rather than supporting their identities as capable communicators within instructional settings.
Overall, deficit-based perceptions of disability and disabled people can create further inequities and compound the barriers they already face. This is because the primary beneficiaries of research involving members of the disabled community have historically been the researchers themselves (Barnes & Sheldon, Reference Barnes, Sheldon and Florian2007; Oliver, Reference Oliver1992). In line with critical discussions of relevance in SLA scholarship (Ortega, Reference Ortega2005), we argue that to make research meaningful and ethical for disabled language users and learners, it is essential to move away from deficit-based research practices, as they continue to harm, exclude, marginalize, and disenfranchise disabled people from research.
The UNCRPD
As applications of medical and rehabilitation models in AL and SLA research persist, there is an ongoing need to reframe research ethics through a disability justice lens. This lens is grounded in principles of respect, confidentiality, access, and relational accountability. As illustrated through our discussion of previous research in AL and SLA, such an approach should also be enacted through a balance of both macroethics and microethics. Beginning with top-down policies that specifically address the rights of disabled participants in research, the UNCRPD (OHCHR, 2006) has sought to shift societal attitudes, policies, and practices for members of the disabled community. The UNCRPD was established as a response to continued human rights violations faced by disabled people internationally. Recognizing the need for a shift from positioning disability as a medical issue to recognizing it as a matter of human rights, decades of advocacy work led by disabled activists and international organizations led to the formation of the treaty (OHCHR, 2006).
The UNCRPD (OHCHR, 2006) also emphasizes the importance of systematically monitoring programs and policies that serve members of the disabled community. The Convention, ratified by 190 States and the European Union (Centre for Excellence in Universal Design, 2025), has been used to assess whether its provisions are being implemented, especially concerning the rights and fundamental freedoms of all disabled people (Good, Reference Good and Iphofen2020). Specifically, the UNCRPD (OHCHR, 2006) has been utilized to evaluate whether the rights of disabled persons are being realized at local, national, and international levels across various social areas such as education, health care, employment, and transportation (Good, Reference Good and Iphofen2020). In terms of research ethics, the UNCRPD (OHCHR, 2006) has also highlighted the need to “develop and strengthen disability ethics both in scope and in application” (Good, Reference Good and Iphofen2020, p. 660), thereby promoting more rigorous and ethical research practices. While the UNCRPD (OHCHR, 2006) has made significant progress in addressing macroethical concerns at the international policy level, there remains a need to extend these commitments to microethical practices, where everyday research often falls short of protecting disabled people’s rights, agency, and access. These gaps in research practices highlight the need for an emancipatory, rights-based framework that redefines ethics in AL and SLA by incorporating respect, representation, reciprocity, informed consent, privacy, confidentiality, and accessibility into the core of the research process.
Emancipatory research methodologies
Considering the issues related to research ethics and members of the disabled community, disability scholars (e.g., Arstein-Kerslake et al., Reference Arstein-Kerslake, Maker, Flynn, Ward, Bell and Dengener2020; Barnes & Sheldon, Reference Barnes, Sheldon and Florian2007; Good, Reference Good and Iphofen2020; Oliver, Reference Oliver1992; Stone & Priestley, Reference Stone and Priestley1996) have called for emancipatory research methodologies that protect the rights of disabled people. The emancipatory research paradigm is closely linked to social justice and focuses on how knowledge production can benefit people who experience marginalization throughout society. Practically, emancipatory research methodologies complement top-down research ethics policies (e.g., the UNCRPD) by emphasizing moral principles that are responsive to participants in local settings.
To begin, emancipatory research rejects the notion of neutrality and requires researchers to adopt a rights-based approach to inquiry (Arstein-Kerslake et al., Reference Arstein-Kerslake, Maker, Flynn, Ward, Bell and Dengener2020). In many traditional research paradigms, neutrality is seen as a way for researchers to maintain objectivity. This is often achieved by maintaining a detached position from the communities or contexts being studied (Cohen et al., Reference Cohen, Manion and Morrison2017). However, this supposed objectivity can be misleading and harmful, especially when research is shaped by power, privilege, and dominant norms. In disability studies, claims of neutrality and objectivity have historically allowed researchers to pathologize, objectify, and dehumanize disabled people. This leads to the treatment of disabled people as passive objects of study rather than recognizing them as active voices in knowledge production (Oliver, Reference Oliver1992). Alternatively, emancipatory research focuses on “the adoption of a social model of disablement as the epistemological bias for research production” (Stone & Priestley, Reference Stone and Priestley1996, p. 706). The emancipatory disability research paradigm also urges researchers to actively identify and challenge ableist understandings of disability and the societal barriers that limit disabled people’s access to research participation, decision-making, representation, and equitable involvement in knowledge creation and research outcomes (Stone & Priestley, Reference Stone and Priestley1996).
As explained earlier, emancipatory disability research aims to promote dialogue between the disabled community and researchers in order to serve, advocate for, and protect the rights and fundamental freedoms of all disabled individuals (Arstein-Kerslake et al., Reference Arstein-Kerslake, Maker, Flynn, Ward, Bell and Dengener2020; Barnes, Reference Barnes1992; Barnes & Sheldon, Reference Barnes, Sheldon and Florian2007). Similar to how scholars have criticized the label “vulnerable” in IRB policies (e.g., Hammett et al., Reference Hammett, Jackson and Bramley2022; Taylor et al., Reference Taylor, Taylor-Neu and Butterwick2020), researchers practicing emancipatory research methodologies scrutinize the power dynamics between themselves and participants. This is especially important for members of the disabled community, given the history of marginalization reinforced by harmful research practices (Arstein-Kerslake et al., Reference Arstein-Kerslake, Maker, Flynn, Ward, Bell and Dengener2020). To challenge unequal power relations between researchers and participants, scholars supporting emancipatory disability research argue that disabled people and related organizations should have control over the research process, rather than researchers or academics (Arstein-Kerslake et al., Reference Arstein-Kerslake, Maker, Flynn, Ward, Bell and Dengener2020; Barnes & Sheldon, Reference Barnes, Sheldon and Florian2007). Emancipatory research approaches align well with scholarship in AL and SLA, as these principles support not only members of the disabled community but also other historically marginalized groups. In particular, adopting community-based and participatory research models has enhanced studies involving underrepresented learner populations, such as research with Indigenous communities (Sarkar, Reference Sarkar2017) and students with migrant and refugee backgrounds (Bigelow et al., Reference Bigelow, Cushing-Leubner, Adam, Hang, Ortega, Pergament, Shanafelt, Allen, Warriner and Bigelow2019).
Introducing an emancipatory, rights-based framework for research ethics in AL and SLA
Recently, disability scholars have called for a human rights approach to research ethics (Arstein-Kerslake et al., Reference Arstein-Kerslake, Maker, Flynn, Ward, Bell and Dengener2020; Good, Reference Good and Iphofen2020; Munger & Mertens, Reference Munger and Mertens2011; Nelson Bryen, Reference Nelson Bryen2016). These frameworks are informed mainly by the UNCRPD (OHCHR, 2006) and therefore focus on disability rights and ethics in their respective fields (e.g., legal studies, adult education). Yet, these frameworks do not capture the nuances of research involving language learners and users. We argue that to truly practice research ethics for and with members of the disabled community, emancipatory research methodologies must embrace what Kubanyiova (Reference Kubanyiova2008) and others (e.g., Helgeland, Reference Helgeland2005) described as an ethics of care approach. More specifically, it is vital to engage with members of the disabled community relationally and in “solidarity with the people under study” (Kubanyiova, Reference Kubanyiova2008, p. 506).
In line with an emancipatory, rights-based approach, this framework aims to highlight barriers within society and how disabled people experience ableism and discrimination. It addresses different forms of ableism that disabled people may encounter before, during, and after the research process. For example, systemic ableism can be embedded into the design of research instruments that assume neurotypical and normative cognitive processes. Consequently, data collection methods may require participants to respond to timed tasks, open-ended written reflections, or lengthy interviews without offering alternative formats or accommodations. Such practices can unintentionally harm, disadvantage, or exclude members of the disabled community, especially when a participant experiences processing differences, anxiety, or difficulties with their executive functioning. In these cases, the research environment can create barriers by reinforcing the idea that only certain types of participation and communication are valid. Our framework promotes inclusive and flexible research methodologies that recognize and accommodate diverse ways of engaging in research. Therefore, this framework outlines five key principles derived from the UNCRPD (OHCHR, 2006), building upon them to create practical guidelines for AL and SLA research. These principles are respect, representation and reciprocity, informed consent, privacy and confidentiality, and accessibility.
Respect
On the level of macroethics, the UNCRPD (OHCHR, 2006) affirms that respect is a fundamental human right, and posits that disabled people’s inherent dignity, individual autonomy, and freedom to make choices are paramount. UNCRPD Article 31 (OHCHR, 2006) outlines the ethical implications of the principle of respect for the dignity and rights of disabled people. Good (Reference Good and Iphofen2020) stipulates that for research to be ethical, it must be understood that “disabled people are subjects in their own lives and must not be treated as mere objects of the actions of others, including researchers” (p. 664). Thus, AL and SLA scholars must examine their own biases and not presuppose participants’ desires and capabilities throughout the research process.
Respect requires researchers to critically engage with the language used about and with members of the disabled community. This includes taking intentional steps to ensure that the language used to describe disability in research does not frame disability as an individual deficit, but rather as a dimension of human diversity shaped by systemic barriers (Dolmage, Reference Dolmage2017). On an epistemological level, we argue that this first requires a paradigm shift away from a deficit-based view of disability. Researchers must exercise caution so that they do not reproduce pathologizing or medicalized descriptions of disability, and instead commit to using disability-affirming and justice-oriented frameworks that are reflective of the participants’ own lived experiences. For example, studies in AL and SLA could examine systemic and environmental barriers that language learners with disabilities experience in instructional settings (e.g., Kangas, Reference Kangas2017). In this case, the focus shifts towards systemic and environmental barriers present within the educational system, rather than on the students themselves. Respect could also be practiced during the research process by exercising flexibility with the research design and protocols to better align with the desires of the participants. For example, in consultation with her participants, Okada (Reference Okada, McKinley and Rose2016) modified her original research methods to better fit their motivation for advocacy and educating the public on their respective disabilities. More specifically, while conducting narrative research, Okada opted to write the stories of her participants as coherent and fully contextualized narratives, rather than adapting parts of stories from each of her participants and presenting their stories as partial and decontextualized. Thus, on the level of microethics, researchers should prioritize agency and position disabled participants as active decision-makers in the research process. The incorporation of an emancipatory rights-based approach would undoubtedly prioritize a more inclusive and equitable research landscape that values the voices and the lived experiences of disabled people.
Representation and reciprocity
From the perspective of top-down research ethics policies, representation and reciprocity emphasize the need for mutual respect and understanding in the research process. These tenets also echo IRB principles encompassing justice, which focus on the equitable and fair treatment of research participants. Focusing specifically on disability rights, UNCRPD Article 30 highlights the right of disabled people to participate fully within their communities (OHCHR, 2006) and thus underscores the necessity of ensuring the voices of disabled people are present in research. In terms of representation, research should seek to promote the inclusion of diverse perspectives and be reflective of the cultural, social, and educational experiences of disabled people. To complement considerations of representation, the tenet of reciprocity prompts researchers to continually question how their work tangibly gives back to the community. In this way, representation and reciprocity can help build relationships and foster collaboration between researchers and disabled people.
The principles of representation and reciprocity, as outlined by IRBs and other governing bodies, are crucial for researchers to consider early in the research process. However, it can be argued that these top-down research policies often limit the chances for meaningful representation and reciprocity with community members. For example, as Sarkar (Reference Sarkar2017) demonstrated through her work with Indigenous communities in Canada, representation in practice is often constrained by IRBs and funding organizations’ requirements to appoint a PhD holder as the principal investigator. As Nuwagaba and Rule (Reference Nuwagaba and Rule2015) pointed out, problems can also occur when there is a lack of representation on IRB committees. While carrying out research with members of the disabled community in Uganda, Nuwagaba and Rule observed that an IRB committee, which mainly consisted of members working in medicine rather than social sciences, handled risk, vulnerability, and disability in their ethics application differently. They noted that IRB guidelines in Uganda and South Africa tend to follow the medical model of disability and often label all disabled participants as “vulnerable.” This approach was also evident in the committee’s handling of the IRB application. Nuwagaba and Rule (Reference Nuwagaba and Rule2015) emphasize that better representation of disabled people in IRBs is essential if the research interests of persons with disabilities are to be properly addressed, stating, “the disability-friendly composition of such committees is crucial if the research interests of persons with disabilities are to be adequately represented” (p. 266). IRBs’ focus on risk reduction can also limit the extent to which reciprocity is achieved through research, which may discourage researchers from undertaking projects that create tangible benefits for specific communities (Taylor et al., Reference Taylor, Taylor-Neu and Butterwick2020). Nevertheless, even when top-down research ethics policies limit meaningful representation and reciprocity, scholars in AL and SLA have shown how small decisions involving data preparation and analysis can improve how participants are represented in research (Bernstein et al., Reference Bernstein, Bhattacharya, Johnson, De Costa, Rabie-Ahmed and Cinaglia2024; Bigelow & Pettitt, Reference Bigelow, Pettitt and De Costa2015).
At the same time, disability justice scholars and activists have long advocated for a shift toward equitable and reciprocal research practices. This shift involves researchers not only consulting with disabled people but also establishing and funding formal leadership and advisory roles for disabled partners. These roles could include co-contributors and advisory committee members who help shape and direct the research from the beginning. Additionally, it is crucial to highlight the work of scholars in AL and SLA who identify as members of the disabled community. Ultimately, such intentional decisions can better serve members of the disabled community and fulfill the call of disability justice leaders, “nothing about us without us,” equitably and reciprocally. This call echoes Henner’s (Reference Henner, Hudley, Mallinson and Bucholtz2024) argument against linguists engaging in “parachute science,” also known as extractive research, particularly in fields such as AL and SLA that mainly focus on how people, disabled or not, use and learn languages.
Informed consent
Informed consent is a fundamental aspect of any ethical research protocol and is highly emphasized by IRBs and regulatory agencies. The principle of consent is also mentioned in Article 31 of the UNCRPD (OHCHR, 2006) concerning members of the disabled community. Essentially, these policies encourage researchers to regularly seek permission from participants to use the data they gather, as well as to clarify how it is analyzed and presented in publications.
In the spirit of an ethics of care approach to research (Kubanyiova, Reference Kubanyiova2008), there is a need to foreground relationality in the ongoing process of informed consent. As Van Goidsenhoven and De Schauwer (Reference Van Goidsenhoven and De Schauwer2022) state, “relational ethics go against the linearity of time and offer subtle resistance to the idea that the researcher is released of any responsibility for what happens after the project” (p. 1328). Beyond the procedural ethics of a signed consent form, the authors describe how consent with one young participant with complex communication needs extended far beyond a single moment, relying instead on the verbal and non-verbal expressions of consent through “many spaces and times to (re)check, (re)connect, and (re)direct” throughout the research process (Goidsenhoven and De Schauwer, Reference Van Goidsenhoven and De Schauwer2022, p. 1327). Therefore, consent processes should recognize disabled people’s full agency and self-determination throughout the research and into the dissemination of results.
There are practical ways for researchers in AL and SLA to build more relational and accessible practices into informed consent, particularly as it pertains to language. In terms of modalities, researchers could provide information in accessible formats using tools such as screen readers, text-to-speech readers, as well as provide materials in the participants’ first languages. Moreover, researchers should build in additional time for participants to understand and respond to information, while also ensuring that participants have an awareness of their privacy risks and their right to give or withhold consent at any time during the study. Embracing an ethics of care approach to informed consent may also involve the inclusion of additional information during the research process that connects participants to supports in the wider community. For example, this could include information about local and national support groups and services that promote participants’ well-being and health. Information could also be provided to help participants make connections to other organizations or community groups within the region. Such practices also align relational approaches to informed consent with the aforementioned principle of reciprocity. Together, these steps to facilitate consent in an accessible and relational manner should be continually negotiated with participants.
Privacy and confidentiality
Protecting the privacy and anonymity of research participants is a key concern for IRBs, as demonstrated by the Canadian Social Sciences and Humanities Research Council’s core principle of welfare (Government of Canada, 2023). Similarly, the UNCRPD (OHCHR, 2006) recognizes that privacy is a complex matter that requires careful attention, especially when working with members of the disabled community (Good, Reference Good and Iphofen2020). Article 22 of the UNCRPD (OHCHR, 2006) states that disabled people have a right to privacy. Specifically, this includes safeguarding personal information such as participants’ academic records and transcripts, as well as medical records. Additionally, Article 31 (OHCHR, 2006) expands this requirement to data collection and analysis practices, which involve anonymizing, de-identifying, or pseudonymizing all identifying information to protect participants’ identities and sensitive data.
In AL and SLA, these principles emphasize the importance of protecting participants’ personal information and respecting their rights to privacy. Consequently, these steps build trust, support participant autonomy, and contribute to a more respectful, fairer, and inclusive approach to research ethics. At the same time, tensions between macroethics and microethics regarding confidentiality can arise when considering participants’ expectations for research outcomes. For example, at the risk of breaching confidentiality, Okada (Reference Okada, McKinley and Rose2016) chose to include more details about her participants’ disabilities, which could have potentially revealed their identities, to fulfill their wishes to educate the public about their disabilities. To mitigate this risk, she took extra measures to anonymize other demographic details, such as where the participant studied and their relationship to the researcher. This example shows how participants can make informed choices about the risks they are willing to accept concerning privacy, confidentiality, and their identities and lived experiences. Therefore, when consulting with participants, such measures can effectively shift traditional ideas of privacy and confidentiality to better serve members of the disabled community.
Accessibility
Accessibility is a fundamental aspect of ethical research that is often overlooked in the research process. Building accessibility into different stages of research requires investigators to assess whether or not their data collection materials are accessible to all participants. Additionally, Article 9 of the UNCRPD (OHCHR, 2006) is concerned with the role of accessibility within society and advocates for stakeholders to take the necessary steps to ensure disabled people can access information. Ethical research must proactively address accessibility needs by ensuring that data collection methods, research tools, consent forms, and dissemination materials are available in multiple formats that are accessible to the greatest number of participants.
As previously described in our discussion of informed consent, researchers in AL and SLA can incorporate accessibility measures during various phases of the research process. To reiterate previously mentioned considerations of modality when working with disabled people, researchers may choose to provide materials in multiple formats such as Braille, sign language, and additional languages. Additionally, researchers can utilize accessible technologies, including text-to-speech software, speech-to-text software, and screen readers, throughout the research process.
Additionally, an often overlooked aspect of accessibility in research ethics involves how results will be communicated to participants and the broader community after the study concludes. Arstein-Kerslake et al. (Reference Arstein-Kerslake, Maker, Flynn, Ward, Bell and Dengener2020) argue that the collected data, as well as the findings, should be given free of charge in accessible formats for members of the disabled community. This argument is also supported by Article 31 of the UNCRPD (OHCHR, 2006), which indicates that participants should have access to research findings in formats that they can understand and use. In the domain of AL and SLA, this principle of accessibility is already practiced with researchers and language teachers in mind. For example, the Instruments and Data for Research in Language Studies (IRIS) database (Marsden & Mackey, Reference Marsden and Mackey2011) promotes open science by hosting datasets and instruments for research in AL and SLA. Similarly, Open Accessible Summaries in Language Studies (OASIS) (Marsden et al., Reference Marsden, Alferink, Andringa, Bolibaugh, Collins, Jackson, Kasprowicz, O’Reilly and Plonsky2018) provides one-page, non-technical summaries of empirical research for language teaching professionals and other stakeholders. Extending these practices to research with disabled people could include simple steps such as using plain language summaries, creating video summaries, or providing multiple modalities of accessing the information. Above all else, it is important to consult with the community in question and ask them what their preferred format is. These types of steps ensure that participants have agency and autonomy while also respecting diverse communication needs and affirming their right to informed participation. At the same time, following these recommendations ensures that research in AL and SLA can serve a greater number of individuals and therefore maximize the potential benefits of scholarship in the field.
Conclusion
This emancipatory, rights-based framework we propose for AL and SLA research builds upon the principles of respect, representation and reciprocity, informed consent, privacy and confidentiality, and accessibility to address the ethical dilemmas researchers face while working with members of the disabled community. As described above, we draw from the UNCRPD (OHCHR, 2006) and advocate for researchers to take intentional steps to reduce the risk of harm when involving disabled individuals as research participants. These steps should be taken whether or not disabled people are the focal population of the study. While this emancipatory framework is grounded in disability justice, its emphasis on access, choice, and relational accountability benefits all individuals and especially those from historically marginalized communities. Moreover, because disability is often underdiagnosed, misdiagnosed, or not disclosed, particularly among communities marginalized by racism, classism, and linguistic discrimination, researchers cannot rely solely on diagnostic labels or self-disclosure to determine participants’ needs. Implementing an emancipatory, rights-based approach is essential in all research as it supports practices for accessible and inclusive research ethics.
In summary, we argue that scholarship must draw on the desires and needs of the disabled community and include the voices and the experiences of disabled people. By centering disabled people’s voices and experiences throughout the research process, it is possible to move beyond macroethics and engage in more inclusive, participatory, and relational research. Accordingly, this approach emphasizes reflexivity, collaboration, and the tangible contributions of research for participants, which aligns with broader calls for social justice and equity in AL and SLA scholarship (Hudley & Flores, Reference Hudley and Flores2022). Thus, we aim to foster a community of practice that not only adheres to ethical standards but also actively contributes to dismantling systemic barriers and promoting the rights and well-being of all participants.
Open access
