Rejecting the Label of “Vulnerable Subjects:” How Rethinking Ethical Guidelines for Research With Participants With Physical Disabilities Can Lead to Better Research

Abstract

Practical hurdles, as well as a lack of education about both how to include people with physical disabilities (PWPD) in one’s research and the implications of failing to do so, have led scholars to exclude PWPD from their research agendas. This includes selecting against topics that focus on disability and designing general research that, intentionally or not, excludes the participation of PWPD. Based on the ethical framework of principlism, I argue that while initially intended to protect disabled people from abusive and extractive research methods, the use of the label “vulnerable” and the continued exclusion of people with physical disabilities from participation in research have reinforced essentialist and ableist stereotypes that breach their rights to autonomy and justice. To combat this, I put forth five suggestions to conduct more ethical research with the inclusion of physically disabled participants: (1) researchers should not let the pressure to publish encourage exclusion as a shortcut, (2) academic training should focus more on providing a background in ethics, (3) researchers should build considerations of accessibility into all of their research plans, (4) researchers should remember that neither ethics nor access is one-size-fits-all, and (5) researchers should consider how ethical research extends beyond the research itself to how that research is represented. Through the application of these suggestions, we will increase the participation of PWPD, both gaining their perspectives and improving research on disability-focused and non-disability-focused topics alike.

Introduction

Numerous scholars have written about the challenges of performing research focusing on the perspectives of people with disabilities. They report pushback from ethical review boards, receiving suggestions to focus on the perspectives of those around the people with disabilities rather than speaking to the disabled individuals themselves, and feeling the need to preemptively alter their research plans to get through what can be seen as an adversarial review process (McMurphy et al., 2013; Smith, 2018). This notion that one’s disability renders them inherently vulnerable and incapable of making the decision to participate in research, either medical or behavioral, is pervasive and has vast impacts on how researchers approach disability, often resulting in the exclusion of disabled people and perspectives. In their project with young people with cerebral palsy, Walsh et al. note that the ethical review board “even asked us to change some of the things that people with disability told us they wanted or needed” (2024, p. 2).

Numerous scholars have discussed the ethical challenges they have faced when attempting to complete research with participants who are disabled (Amann & Sleigh, 2021; Ashby, 2011; Finlay & Lyons, 2002; Frank, 2000; Gustafson & Brunger, 2014; Haines, 2017; Milligan et al., 2019; Murray et al., 2012; Smith, 2018). Central to many of these challenges is the way that review boards categorize people with disabilities (PWD) as members of a vulnerable population. Often, PWD are assumed to be vulnerable, at risk of harm or being taken advantage of because of cultural associations between disability, dependence, and an inability to advocate for oneself (Walsh et al., 2024).

Notably, not all decisions are made after intense ethical consideration. Heuristic approaches and formal policies can create norms that are taken up uncritically and may or may not reflect shared values (Gigerenzer, 2008; Hartmann & McLaughlin, 2018; Sunstein, 2005). Thus, even in research, some choices are not considered important enough to merit massive debate. Other times, the information necessary to make fully informed decisions is unavailable. However, when creating shared guidelines, it is important not to simply follow the path of least resistance but to acknowledge that policies and standardized practices have material consequences. In this paper, I confront the consequences of standards put in place by ethical review boards as well as the practices of individual researchers. Then, I argue for the importance of following a crip methodology and put forth five main takeaways and present suggestions for more ethical research practices, such as directing researchers to consider their responsibility to ensure that their research is inclusive and accessible in design and dissemination practices.

As a scholar who both identifies as multiply-disabled and whose research primarily focuses on topics of disability, I wish to explore how systemic and discursive norms in academia lead to the exclusion of people with disabilities from participation in research and share suggestions on how individuals can work to challenge these issues in their own research practices. While many scholars have addressed questions of consent and competence regarding the inclusion of people with intellectual disabilities (Haines, 2017; Jones, 2021; Yoon, 2023), one of my mentors, disability ethicist and activist Dr. Carol Gill, challenged me to address how the conflation of disability with vulnerability is also exclusive of people whose disabilities are physical or sensory in nature, rather than only intellectual. In this project, I address attitudes and norms that unjustly exclude disabled people from participation, including the tendency of individuals and ethical review boards to identify people with disabilities as an inherently vulnerable group. Here, the use of the term vulnerable itself is not the primary concern. Rather, this labelling practice is a proxy for the larger issue of researchers infantilizing and excluding disabled people, a practice which I argue is both unjust to disabled people and which acts to the detriment of the research community.

Numerous scholars have addressed research ethics and inclusion with participants with intellectual disabilities (Flynn, 2024; Haines, 2017; Jones, 2021; McClimens & Allmark, 2011). However, other forms of disability must also be considered when discussing ethical research practices. Beyond individual diagnoses, disabilities may be sorted into a few broader types, such as intellectual, mental, sensory, and physical disabilities. Each of these groups faces different challenges, including differences in social status. Notably, hierarchies of disability often present people with certain disabilities as more stigmatized and others as “easier” to interact with (Deal, 2003; Harpur, 2020; Schweik, 2009; Shaw et al., 2022) and researchers can lean on these perspectives when determining that a population is too difficult to include in their research (Shaw & Wickenden, 2024; Watharow & Wayland, 2022). Thus, it is vital to be conscious of these biases and mindful of actively seeking the voices of those who may have been unjustly excluded in the past.

Another note: throughout this paper I will speak primarily to examples of participants with physical and sensory disabilities. However, my arguments may also be applicable to any number of cases where groups are labeled as vulnerable in a way that limits rather than expands the potential for participation. Additionally, while I personally prefer identity-first language, I acknowledge that individuals’ preferences vary, with some people preferring to be referred to with person-first language. Thus, I alternate use throughout my paper.

Conceptualizing Vulnerability

Members of the disability community have long been subject to abusive and extractive research practices, wherein researchers have taken advantage of the access to and lack of protections for disabled people, feeling entitled to our bodies and experiences (Gustafson & Brunger, 2014; Milligan et al., 2019; Sutton et al., 2003) and “people with disabilities are at increased risk of coercion and abuse” (Shaw & Wickenden, 2024, p. 6). To combat these abuses, ethical guides such as the 1949 Nuremberg Code (Dalhousie University Library, 2023) and the 1976 Belmont Report (Sutton et al., 2003) have been adopted, and scholars continue to address how ethical frameworks can guide researchers to more ethical and caring practices (Palmer & Udoh, 2024). One notable framework is principlism, outlined in Beauchamp and Childress’ canonical text, Principles of Biomedical Ethics (2013). This framework lays out four principles that should be used to guide one’s research: autonomy, beneficence, nonmaleficence, and justice – essentially working to uphold participants’ right to make their own informed decisions, minimize harm, actively provide benefit to participants, and engage participants fairly and equitably (Beauchamp & Childress, 2013). All four principles must be considered when making ethical decisions and finding a balance between these drives rather than privileging one above the others.

The principle of autonomy is generally enacted through informed consent, ensuring that potential participants are making autonomous decisions to engage based on informed and ongoing consent rather than coercive influence or lack of information. However, scholars may disagree about addressing the other three principles when crafting their research plans. For example, suppose one wishes to uphold non-maleficence and ensure that no possible harm can be done to participants, especially those deemed particularly vulnerable. In that case, they may argue that engaging said participants in their research is unethical. However, this exclusion can conflict with the principles of beneficence and justice by inequitably disallowing these already “vulnerable” individuals the chance to engage in research that might provide benefits for them and their communities.

On one hand, some scholars have theorized about vulnerability as inherent to the human condition, with one’s body inevitably vulnerable to physical harms such as injury and disease, and our nature as social animals, instilling further interdependence to maintain social and psychological well-being (Mackenzie et al., 2014). For example, social vulnerability comes in many forms, including “susceptibility of particular persons or groups to specific kinds of harm or threat by others” (Mackenzie et al., 2014, p. 6). Due to the overwhelming potential to conceptualize vulnerability in widely varied ways, many regulatory bodies have adopted a subpopulation approach, identifying distinct groups of people as vulnerable. These subpopulations may include: pregnant people; children; the elderly; disabled people; people who have experienced trauma; people with substance abuse issues; students; educationally disadvantaged people; people who are unemployed, unhoused, or otherwise economically disadvantaged; nomads; refugees; ethnic or racial minorities; LGBTQIA + people; and many more (Sieber, 2008). The vastness of this list, while still not comprehensive, exemplifies the failure of this approach. Simply listing categories of people as vulnerable will inevitably fail to distinguish between individuals, including people who are not particularly vulnerable in a given circumstance, and excluding others who are. Thus, the goal is not simply to rid ourselves of this label. Rather, it is more useful to push for each researcher to consider the specific goals and context of an individual research project and work to identify how power imbalances may arise and create particular vulnerabilities in that instance.

Constructing PWPD as Vulnerable Subjects

One wrinkle in the application of the label vulnerable to all disabled participants is that it both flattens the differences of all PWD into one supposedly common category and reifies an essentialist and paternalistic view of disability. As with all subpopulation approaches, Gustafson and Brunger (2014) argue that this categorization of disabled people as a singular subpopulation is blatantly ignorant of the intersectionality of disabled people’s identities, ignoring how differences in race, class, gender, sexuality, diagnosis, and other traits alter one’s experiences. This is particularly notable as scholars have already critiqued a tendency to view categories such as these as monolithic and distinct from other identities, erasing the reality of this diverse group and constructing disability as a health issue without addressing health disparities or how cultural attitudes to the concept of dependence impact who identifies as disabled (Bell, 2017; Ben-Moshe & Magaña, 2014). Additionally, the implications of the label vulnerable can act to uphold the notion that PWD are dependent upon researchers to protect them from harm, reifying the power difference that makes participants vulnerable in the first place and positioning PWD as subjects of research rather than active participants in it.

Benefits of Addressing the Vulnerability of PWPD

Where mental competence is the benchmark of vulnerability, PWPD might not be considered vulnerable at all. However, it is important to consider how social forces work to construct PWPD as vulnerable subjects and how changes can be made to help prevent the (re)creation of unjust research practices by signaling researchers to be aware of their responsibility to address power imbalances and social and material barriers to disabled individuals’ full participation in their projects. These considerations may include acknowledgement of how PWPD are socialized to accept the attitudes of medical authorities and other “experts” and the social isolation that some PWPD face as a result of social stigma and inaccessibility in various realms of public life. For example, isolation and lack of external support can enable researchers to take advantage of or make participants overly reliant upon them (Antle, 2017). Each of these factors can lead to increased levels of acquiescence, wherein participants are more likely to answer in ways aligned with what they believe the researchers desire. Acquiescence, while not an issue specific only to the inclusion of disabled people, must be considered here as it is often impacted by whether people live in environments that promote agreeable or submissive behavior, such as those who have been institutionalized or live in tight-knit communities, including some members of the disability community, who may adapt to social pressures by adopting agreeable behavior (Finlay & Lyons, 2002).

Additionally, financial hardship may contribute to the vulnerability of PWPD. Those with lower economic status are more likely to acquire disabilities, and social reactions to physical disabilities can act as a hindrance to gainful employment (Palmer, 2011). Additionally, research has identified connections between disability, poverty, and exclusion (Banks et al., 2017). Thus, high levels of unemployment and financial hardship can act as coercive forces, pressuring PWPD to engage in research in which they are uncomfortable or otherwise uninterested. This is certainly not to say that researchers should not seek to provide compensation for participants’ time and energy; it is simply a caution that researchers must be mindful of how their assumptions about participants’ social and financial circumstances impact their recruitment and treatment of PWD.

Furthermore, PWPD are rendered vulnerable when they are confronted with a lack of material accessibility. Social models of disability each describe how people are not individually and essentially disabled by their impairments – rather they are dis-abled by the inaccessibility of public spaces (Kafer, 2013). Thus, researchers must apply a crip methodology to address the material concerns that might otherwise prevent their participation. This may look like ensuring that all spaces in which the research is performed are wheelchair accessible, noting that some PWPD may require personal assistants to be present to facilitate their involvement in the research, providing participants with the opportunity to take breaks or adjust the temperature of the space, or any number of other accommodations. Furthermore, one should ensure that participants have access to participant information sheets that are detailed but not cumbersome and guarantee that informed consent is truly informed. These considerations should be proactive and flexible to minimize the discomfort and vulnerability of the participants.

Concerns About Setting PWPD Apart and the Use of the Term “Vulnerable”

While there are some benefits to appreciating the unique positionality of PWPD, it is not evident that doing this by constructing them as a distinct – and vulnerable – population is the best way to ensure that this reflection occurs. As discussed above, it is problematic to conflate all disabled people as set apart from the non-disabled supposedly “universal” subject. By setting PWPD apart from the general population of potential participants in one’s research, one reifies the essentialist view of a distinct disabled/non-disabled binary. This action functions to Other PWD and does little to address the specific issues that might arise in one’s research. For example, identifying PWPD as a distinct group to ensure that they receive appropriate accommodations may hinder their access if researchers assume a single set of accommodations will benefit all PWPD rather than adjusting to the specific needs of their participants. Rather, researchers must ensure a variety of ways to engage in research if they seek to gather the perspectives of a wide range of disabled individuals (Watharow & Wayland, 2022).

An additional concern is that by conceptualizing PWPD as a distinct group, their perspectives are siloed and excluded from “general” research, that which does not explicitly research topics about disability (Milligan et al., 2019). Previous scholars have identified ethical concerns regarding the exclusion of women and gender minorities, pregnant people, and non-white individuals from research, skewing the results of research whose results are intended to be generalizable to the broader population and denying people from these minority groups the potential benefits of the study (Costanza-Chock, 2020; Smith et al., 2020). Similar issues arise when researchers or review boards fail to recognize and include PWD in their understanding of the population at large. When this occurs, research fails to represent the entirety of the population it claims to address, and these limited results may either be improperly generalized or used to unconsciously reinforce the idea that disabled people are not truly a part of their broader communities (Milligan et al., 2019).

However, the issue is not only in the results. This distinction between disabled and non-disabled participants pollutes the process of research itself. For instance, when not expecting to be working with PWD, researchers may not preemptively consider the accessibility of their research designs. As a result, having to alter their plans to accommodate PWPD retroactively may feel intrusive, inconvenient, and generally frustrating. Although it is the researchers’ job to ensure that their research is not unjustly exclusionary, this frustration can be misattributed to the participants’ needs being arbitrary and/or burdensome. This thinking interprets accommodations and access needs as extra things that PWD need/demand that go beyond what “normal” participants would require. Thus, disabled people can be seen as difficult to work with, discouraging their inclusion (Shaw & Wickenden, 2024).

In a publish or perish system, this can lead scholars to avoid actively pursuing the inclusion of disabled participants. For example, my own peers have questioned how “worth it” it was for me to put off interviews for my dissertation until I received the funding I felt was required to compensate my participants. Some also questioned why I was focused on making plans for potentially neurodivergent participants or those with needs for sensory accommodations when my intended research focused on PWPD who utilize prosthetic limbs, and it was not guaranteed that these additional accommodations would be necessary. It made sense to them that I would make preemptive accommodations for prosthesis users specifically (since this was in my inclusion criteria), but not that I would “complicate” and slow down my research by worrying about what they saw as unnecessary concerns. McMurphy et al. found this same messaging coming from MA and PhD advisors, including one who stated “I advise my students to stay away from many of the issues that I know will significantly slow them down [in terms of ethics review], which, of course, means that many of them will not be able to do the research they really want to do” (2013, p. 31). This includes working with populations deemed vulnerable, such as disabled people.

Beyond the broader concern of whether PWPD should be set apart from the general population of potential research participants, using the specific term vulnerable to make this delineation is problematic. Specifically, while the label may be intended to draw attention to power imbalances and discourage abuse, colloquial understandings of the term can lead to a different reading, depicting vulnerability as some essential feature of all PWD. In fact, applying the term vulnerable as a descriptor of PWD themselves rather than the result of existing social structures mirrors the issues with the medical model of disability, which conceptualizes disability as an issue with an individual body or mind rather than a problem in the ways that society dis-ables people through inaccessible social and material conditions (Marks, 1997). Furthermore, the term vulnerable can carry the connotation of being young and needing help or protection. This becomes problematic because our individualistic and neoliberal culture views dependence as an inherently negative trait, and PWD (including PWPD) are already infantilized and patronized because of this association (Walsh et al., 2024). This impacts research practices by inviting and reinforcing paternalism from researchers and review boards.

Review Boards and Standardizing Ethical Practices

Because these effects are not only the result of social stigma but ideas reinforced by policies and norms, it is important to consider standardization’s role in forming and enforcing ethical guidelines for research. Johannesen et al. state that formal ethical codes can: (1) orient new persons into a profession by providing them guides for acceptable behavior, (2) limit the number of uncertainties with which an individual must struggle when determining their path forward, and (3) minimize the need for potentially “cumbersome and intrusive” external regulations (2008, p. 182). Furthermore, they note how the formation of codes can become a question of character, as the practice of creating these codes can force individuals to think critically and reflexively about how they hope to achieve their goals and imagine not specifically which actions to take, but what kind of person or researcher one wants to be. Additionally, standardization can be a necessary tool for processing large amounts of information in a time-bound manner. For example, Institutional Review Boards (IRBs) are expected to process applications for all the research being done at their institution, and due to shifting roles – what Gorman (2011) calls “governance creep” – are increasingly treated as auditors rather than advisors in research practice (Walsh et al., 2024). Having standard expectations can be valuable in facilitating timely responses to researchers’ applications.

However, because ethical review boards need to make concise decisions about what research is and is not permissible (and the fact that this line is often drawn concerning questions of liability rather than a deep understanding of each case’s potential merits), they can fall into the role of gatekeeper, tasked primarily with identifying and critiquing potentially fraught research designs (Gorman, 2021). Numerous scholars have critiqued review boards for gatekeeping what research is allowed to be done and which participants are acceptable to include, rather than facilitating the ethical performance of research, which is uncommon in topic or method (Walsh et al., 2024).

Part of this critique comes from the view that research boards follow prescriptive ethics, the notion that there are certain check-boxes to fill out, and so long as one’s research design appropriately checks those boxes, it can be rubber-stamped as acceptable (Croft et al., 2024) while at the same time, other projects are rejected outright for not fitting into the expected bounds (Walsh et al., 2024; Whelan, 2018). For example, Smith (2018) describes the negative impact of the IRB on her research, discouraging her from gathering oral histories from people in special education classes about their experiences, leading to thoughts about abandoning the project in favor of an “easier” topic. She recounts that the IRB automatically designated her participants vulnerable because their inclusion in special education courses marked them as disabled, and that the resulting hurdles in approval for her research were the result of the IRB focusing on the category of disabled/vulnerable subjects rather than her specific participants and research design. Because those in charge of approving her project knew little about the community with which Smith planned to engage, they assumed that doing research “on” these disabled people was potentially harmful in a way that the same project working with a population not viewed as vulnerable would not be. “Their label, not their story… proved most compelling to the university IRB” (Smith, 2018, p. 138).

Other scholars express similar sentiments, arguing that they viewed IRBs as tending to block research working with PWD on principle rather than exploring the specifics of a given case and creating a need for researchers to adjust their plans to what they anticipate will be approved rather than what they think is actually best (McMurphy et al., 2013). These cases exemplify the need to appeal initial rejections, educate the decision-makers about one’s project, and emphasize inclusion in relevant research as a right.

Yet, many scholars have also had positive interactions with their review boards, noting surprise at quick turnaround and sometimes even describing appreciation for collaborative and useful feedback (McMurphy et al., 2013). Still, a paradox of perception remains that while the majority of McMurphy et al.’s participants reported positive experiences, they still viewed these experiences as anomalies and anticipated difficulties in the future. Thus, while it is not necessarily true that novel methods and the inclusion of often overlooked participants always and inherently stall one’s research, people’s perception of this system implicitly promotes the replication of well-worn research methods rather than encouraging researchers to analyze the ethics of their projects creatively and critically.

Murray et al. (2012) argue that potentially vulnerable participants need not be protected from research – a paternalistic approach – but rather provided intentional support to assist them through said research. This reframing will allow participants and others like them to benefit from the research and circumvent the issue of undue exclusion. Fundamentally, the question is not why PWPD are excluded, but how we can ethically include them. Many of the challenges faced by PWD, such as social isolation and financial difficulties, are the same traits that marginalize other non-disabled participants as well. Thus, forming practical steps to support their inclusion will raise all boats.

To support the participation of PWPD, researchers must address material concerns such as wheelchair access to and throughout our research spaces, providing speech-to-text technologies, and the option to participate remotely or bring along a personal assistant. Additional supports may include ergonomic chairs, desks, and writing utensils, large-print written materials, multiple modality options for interviews, and restrooms within the research building. Of course, not all of these access needs are relevant to every research project; it will depend on the goals and methods of the study. However, they should not be seen as “exceptional” considerations either. When Milligan et al. (2012) reviewed the IRB policies at 55 federally funded public universities, they discovered that none of those policies included any discussion of how to make their research inclusive of or accessible to disabled participants. Essentially, they argued that access needs are not addressed in policies for the approval of general research at all, failing to live up to the moral obligation of equal inclusion and leaving these universities open to potential litigation regarding exclusive practices. Thus, individuals must hold themselves accountable to think critically about their own research plans’ accessibility.

Exclusion as an Ethical Breach

The primary result of this research landscape is the exclusion of PWPD as participants in research – both general research and disability-related. Whether this exclusion results from researchers’ lack of education and training or personal biases, the result is the same: an ethical breach, especially of the principles of autonomy, justice, and beneficence.

When systematic discrimination denies people the opportunity to volunteer for research in which they would be relevant participants, this is a flagrant violation of the principles of ethical decision-making – circumventing their ability to make autonomous decisions, denying them beneficence, and acting unjustly (Sutton et al., 2003; Watharow & Wayland, 2022). However, these are not the be-all and end-all of ensuring autonomy is upheld. The autonomy of PWPD is encroached upon when they are denied the right to decide for themselves whether or not they wish to participate.

Discrimination and Avoidance

Ideally, any research being performed contributes to a body of knowledge that can benefit the participants by better understanding those involved and providing information that can shine a light on how people think and interact with each other and their social or physical environments. However, even when the potential benefit to other people is acknowledged, there is a common concern that asking individuals to discuss personal experiences, especially those of negative or traumatic events, harms the individual and contradicts the principle of nonmaleficence. Yet, the concerns of harming people by asking them to share their experiences are not necessarily borne out by data. For example, engagement in interview-based research is generally viewed positively by participants (Shaw & Wickenden, 2024) and can be empowering to them (Price & Kerschbaum, 2016). Indeed, individuals from minority populations have been shown to gain even more personal benefits from engagement than other participants (Sieber, 2008). Furthermore, if the justification for this encroachment is predicated on their disabled status, the issue becomes one of justice, wherein all people are entitled to equitable treatment.

Structural hurdles impact researchers’ ability to access their desired diverse perspectives. Amann and Sleigh (2021) identify resource, initiation, and collaboration challenges as concerns that make including “vulnerable” populations in research difficult. Resource-related challenges include time and money. When researchers try to include participants from specific populations, it necessitates certain resources that can be difficult to access. Initiation challenges focus on stating one’s project, gaining access to participants, deciding how to engage with one’s participants, etc. Finally, collaboration challenges occur during the research process, such as finding times and places to meet, miscommunications, stigma (on either side of the researcher/participant equation), and researchers’ desire to avoid overburdening their participants. Between these various challenges, it is clear that even researchers who are intentional about seeking out disabled participants may have difficulty ensuring equitable access to participation.

Additionally, Chris Bell describes how stereotypes about who PWPD are – such as the image of the white man in a wheelchair – limit how disability is represented in research (2017). For example, working from an assumed image of disability can skew researchers’ attempts at inclusive sampling. Failing to address how race, class, gender, etc., are linked to higher levels of disability can result in studies that exclude vital perspectives, even in supposedly accessible studies. Simply “allowing” PWPD to act as participants while not actively seeking a broad range of participants and providing accessibility for them is not enough to gain valuable insight.

The exclusion of PWPD from participation in research, whether intentional or not, results in numerous adverse outcomes. As previously discussed, the voices and perspectives of people with disabilities are often not represented in supposedly generalizable results. Additionally, researchers can continue to perpetuate the cycle of people speaking for individuals with disabilities rather than uplifting their voices directly. This can look like when researchers focus on the perspectives of friends, family, medical professionals, or other tangential individuals for their views on disability instead of asking for the perspectives of people with disabilities themselves (Bendixen et al., 2022; Russell et al., 2024). Many studies that explore topics of disability include the perspective of non-disabled individuals alongside those responses by disabled individuals without clearly delineating which responses have come from which group, a lack of differentiation that taints the otherwise valuable data (Raines et al., 2023). To gather information from non-disabled stakeholders is not inherently harmful, but to do so at the expense of uplifting disabled voices or to actively avoid the perspectives of PWD because they are seen as too complex, vulnerable, or otherwise “bad” participants is unacceptable and results in discriminatory and inferior research.

Issues of (Mis)interpretation

This practice also harms beneficence, wherein the secondary sources cannot provide the same benefit to people with disabilities as research conducted with disabled participants does. Ashby (2011) expands upon this idea by describing how all research is an inherently interpretive practice. Researchers interpret the data, and then readers interpret the written research. However, while researchers must interpret and (re)present the perspectives of their participants, it is not the responsibility of external authorities or professional experts to tell participants how to describe their identities or experiences. In the case of PWPD, researchers must understand and appreciate the language and worldviews shared with them. This is true not only in the descriptions of lived experiences, as he points out, but also in the language used to express these ideas.

In gender studies, it is becoming more common to acknowledge the language with which individuals describe their gender and sexual orientation rather than attempting to categorize participants based on researchers’ views of how the participants look, sound, act, etc. Similarly, while people who study disability-related topics may view their participants as existing in a specific category because of their bodily or behavioral differences, it is not up to the researchers to determine the appropriate language to describe them. For example, many PWPD may identify as disabled, while others might not (Kafer, 2013). Some individuals identify only with their specific diagnosis and not with the broader category of disability. Others shape their identity based on their symptoms and experiences, not necessarily with their diagnosis or the label “disabled” at all. There is also a distinction that may be felt between those who grew up with a disability and those who have acquired a disability over time. Each term used to describe participants’ bodyminds is extremely value-laden, and to externally attribute some such label on an individual without their consent is to challenge their right to self-identify.

Thus, researchers need to understand and acknowledge the distinction between our own academic backgrounds and the lived reality of the participants with whom we engage. One may identify their participants based on specific criteria and thus assume that all relevant participants can be categorized using the academic terminology that the researcher used to form their criteria. However, we should still recognize that our participants may or may not view themselves through that same lens, and this should be discussed in our research.

Antunes and Dhoest (2019) further the discussion of authorship and representation in research in their article concerning the use of pseudonyms, arguing that, in contrast to the assumption that participants are better off when their input is anonymized, some strongly desire to have their names associated with their contributions. Even when participants agree to engage in research and allow their input to be interpreted and shared by researchers, it is important to acknowledge that these are still their own experiences and opinions being shared, and their feelings towards this representation may shift over time (Frank, 2000). PWD are not simply resources to be “tapped” for information, but experts in their own right who share their knowledge and deserve to be credited for their contributions if so desired.

All of this boils down to the general concern that research that excludes the voices of PWPD will inherently fail to benefit from their participation and is inherently unjust. This exclusion harms PWPD, who cannot gain the benefit of having their experiences recorded and analyzed and who are thus being treated inequitably. It also harms researchers who cannot gather a broad set of varied and theoretically valuable data. Moreover, this research is inherently of lower quality because it seeks to represent people without first understanding their experiences.

Solution

I propose that crip methodology, as defined by Price and Kerschbaum (2016) is the ideal solution to this problem. Crip methodology is not a specific method, but the idea that research designs should be built with accessibility and disability ethics in mind from the very beginning, not additively or in retrospect. They argue that acknowledging disability inherently crips one’s research methodologies, exposing and challenging normative practices and ensuring that scholars are called to generate new methods of study rather than simply retrofitting existing practices. Markham (2006) argues that all methods questions are ethical questions. Thus, as researchers, we should be thinking critically about our methodology rather than relying on the IRB to simply rubber stamp our proposals, and we should not be waiting to see if issues arise before determining an accessible “fix” for their initially inaccessible designs. Building accessibility into the foundation of each project minimizes the friction that researchers can feel when attempting to include PWPD in our research and creates a welcoming space for participants. As a starting point, I present five key takeaways from this article.

#1: Do not let the pressure to publish make you exclusionary as a shortcut. This is, of course, easier said than done. However, when attempting to shift towards more ethical research, the importance of this step cannot be overstated. It is common for researchers who face challenges gathering data to fall back on methods that they find more expedient, such as using convenience samples rather than purposive ones, regardless of the appropriateness of this method to their research goals (Campbell et al., 2020). In a “publish or perish” system, the structural hurdles described above can discourage attempts to provide access for all people, especially when this practice is not normalized within one’s department, institution, or discipline.

When Milligan et al. (2019) studied the IRB policies at universities in the United States, they did not find any references to disability-focused expectations such as accommodations, accessibility, universal design, or the Americans with Disabilities Act. They argue that these review boards are not doing enough to encourage the inclusion of people with disabilities in research. Thus, settling for “good enough” by simply addressing the broadest requirements of these IRBs may not effectively address the exclusion of disabled individuals, especially in “general” research where people are not actively encouraged to address issues such as sensory sensitivities, the integration of personal assistants or assistive technologies, or how required screen use may cause issues such as migraines, amongst other considerations. Of course, not all accommodations are compatible with all research designs – if someone is studying screen use, then they may not have the same flexibility to provide alternatives such as face-to-face or phone-based communication tools as those focusing on other topics. However, failing to preemptively include disabled participants reflects the pressure to do research quickly rather than intentionally and defaults to exclusionary, ableist practices. Focusing on quality rather than quantity will produce more valuable research and more generative results.

#2: Academic training needs to focus more on providing researchers with a background in ethics. While the goals of the IRB are laudable, in the universities that I have been a part of, the required training tends to be largely procedural, even at the graduate level. Additionally, McMurphy et al. (2013) note that few of their participants received any ethical training beyond that of their undergraduate and graduate programs, meaning that the gaps in these programs are not often filled elsewhere. Furthermore, Gonzalez and Davis (2016) argue that while ethical oversight, the establishment of ethical guidelines, and the formation of review boards were initially intended to act as guardrails to make researchers genuinely consider the consequences of their research, the current system for ethical review often does the opposite. When getting IRB approval is seen as a formality or hoop to jump through rather than a part of constructive peer review, we are less likely to feel the responsibility to work through the moral ramifications of our research designs independently (McMurphy et al., 2013). Beyond simply teaching individuals how to anonymize data or safeguard encrypted information, ethics training should focus on not the supposedly essentialist vulnerability of a person or group, but how the historical context and power dynamics related to one’s research impact one’s specific case. We must consider how the four principles of autonomy, beneficence, nonmaleficence, and justice can point us to questions of equity in the research process.

#3: Researchers should acknowledge that differences in access needs are pervasive in the general population and build these considerations into all of their research plans. The World Health Organization estimates that about 16% of the global population is disabled (WHO, 2022). Other estimates are higher, such as the Center for Disease Control and Prevention in the United States, which argues it is closer to 27% (CDC, 2024). Therefore, all researchers should include accessibility in their plans for each upcoming project. This includes minimizing obvious barriers (such as inaccessible spaces) and taking proactive steps, such as applying concepts from Universal Design to make one’s project accessible to as many people as possible from the beginning (Meyers & Andresen, 2000; Williams & Moore, 2011). Researchers should also actively indicate an openness to making accommodations for individual participants in their calls for participants, something which will actively encourage engagement from those who might have otherwise assumed that the research project would be inaccessible to them.

#4: Remember that neither ethics nor access are one-size-fits-all. Both ethical decisions and accessible designs are goals that can be led by specific guides but must inevitably be adjusted to address individual cases (Magnus & Tøssebro, 2014). It is vital to address intersectionality here too, with a reminder that addressing the potential needs of people from a disability justice lens also necessitates that one address the particularity of their participants’ class, race, and gender, and work to be inclusive along these axes of identity as well (Bell, 2017; Ben-Moshe & Magaña, 2014). Although we can seek to establish a personal plan for addressing common concerns, we cannot become complacent and act as if these decisions, once made, are set forever. Each new instance must be addressed with the same thoughtful care.

#5: Ethical research requires considerations not only about research design but also the representation of that research. Yes, it is vital to ensure that one’s research site and activities are accessible to PWPD. However, a researcher using a true crip methodology will also think about how to ensure that their analysis, potential feedback, and publication practices are ethical and accessible too (Furlong, 2023; Young & Clerke, 2024). What audience are you writing for? Is it popular, focused on a specific academic discipline, or professional domain? Who will have access to this information? Is your paper or presentation crafted in a way that enables the findings to be understood and shared with all audiences that could benefit from it? What language are you using to describe your participants and their experiences? Who is getting credit for this information? All of these things matter.

Conclusion

Moving forward, we must be more intentional and transparent about designing and representing our research. Some scholars, especially those without a background in disability studies or who are performing research with participants whose access needs they might not be familiar with, may be hesitant not only to include PWPD in their research but also to speak openly about how their attempts to provide access or include these participants worked. For example, Sandvig and Hargittai (2015) have critiqued academics for being intentionally vague about their research processes and writing unhelpful and obscure methods sections as a “defensive hedge” to avoid criticism. However, Fearon (2019) has argued that it is vital to share information on how one has adapted their research design for accessibility so that we as researchers can share this information and learn from what practices were successful and which were not, rather than independently reinventing the wheel. Johannesen et al. (2008) go so far as to claim that it is inherently unethical to be intentionally vague in writing which is intended to be instructional. Therefore, transparency is needed - even though it is scary (Campbell et al., 2020). Where the goal is to question assumptions, produce and share knowledge, and expand one’s thinking through research, we must challenge ourselves to share our successes and failures openly rather than withholding information for fear of criticism. Of course, this is easier said than done. The current publish-or-perish system creates a competitive environment and scarcity mentality, wherein we can feel ownership over our participants (read: subjects), methods, and data rather than the communal sharing of information that an interdependent and care-based system would seek to uphold.

Still, structural changes to personal and professional norms provide opportunities for growth. Amann and Sleigh call on scholars to actively “promote oversight” through reflexive practices and (re)negotiation of shared standards (2021, p. 721). This oversight and standardization, if used to uplift and advance norms of accessibility and inclusion, need not be inherently problematic. Additionally, as discussed above, we should address concerns of authorship and identity by asking participants how they would like to be described and providing opportunities for participants to provide feedback, redirecting our research if needed. Rather than opting for the most straightforward option, we must also view sampling in the same way that we have come to discuss citation practices – these are intentional decisions that, when not actively considered, often result in the reproduction of the same voices over and over, rather than seeking out and generating diverse points of view.

Additionally, we should work to provide reimbursements or financial compensation to our participants when possible. Many PWPD may face financial hardship, so the researchers should cover additional costs such as travel or refreshments for in-person research. Again, because ethical practices and access needs are context-dependent, there are no hard-and-fast rules, but I encourage researchers to adopt compensation as the norm. Furthermore, beyond addressing the questions of representation and publishing practices mentioned above, it is important to note how providing access through plain language and open-source materials can lower the barriers to information-sharing, creating more opportunities for feedback and engagement, and ensuring that the benefits of one’s research have a longer reach. This shift towards transparency and inclusivity will help provide access to all people and mitigate the harms of paternalistic and exclusionary research practices.

In conclusion, while the history of harmful and extractive research led to the formation of standardized practices to protect PWD, their continued exclusion from participation in research has reinforced the essentialist stereotype that they are vulnerable, a stereotype that functions to infantilize and patronize them. This pattern denies individuals the right to make autonomous decisions and acts unjustly to block individuals and the broader community from benefiting from their contributions. It is for these reasons that the term vulnerable becomes problematic. As a community of researchers, we must rethink what it means to be vulnerable and our role in furthering the difficulties of PWPD, and rather than focusing on specific labels, we should instead acknowledge PWD as akin to other potential participants – individuals with unique access needs, economic circumstances, personal networks, etc. Thus, noting this variation is true of all people, we must make crip methodology the norm, not only for the benefit of PWD and “disability research” but for the benefit of research at large.