The student self-advocacy literature commonly claims that although self-advocacy is a vital skill that disabled students require to succeed in postsecondary education, many of these students experience a significant 'skills-deficit' in this area. This paper seeks to intervene in this literature by proposing opportunities to 'politicize' self-advocacy and move away from its individual, deficit-focused approach. To do so, the paper reports findings from a qualitative study at a research-intensive Canadian university. Interviews with 11 disabled students revealed a perception that there is an institutionally endorsed 'right way' to self-advocate that included expectations to: (1) register for formal accommodations; (2) embody visible/physical disability; (3) perform less disabled; and (4) make others comfortable. Rooted in ableism, these harmful expectations adopt misconceptions of disability as predictable and visible, and burden students with demands that they make their self-advocacy convenient for those to whom they are self-advocating. As a form of resistance to these ableist expectations, students described their own 'better way' of negotiating self-advocacy and disability on campus. This 'better way' offers opportunities for 'politicizing' self-advocacy by recognizing ableism and the harms of the self-advocacy model, affirming disabled student knowledge and community, and enacting their visions for institutional change. Vital to this politicization is a move away from staff and nondisabled-led initiatives like self-advocacy training to address a perceived skills-deficit in individual students. Politicizing self-advocacy moves instead towards disabled students as full partners in conducting research and informing student services and staff training based on their collective lived expertise and strategic practices.
While disabled students are attending postsecondary institutions in rapidly growing numbers (Daly-Cano & Newman, 2014; Ju, Zeng, & Landmark, 2017; Kimball, 2016), the number of disabled students graduating from these institutions is not growing at nearly the same rate (Griful-Freixenet et al., 2017). This is due to the many barriers facing disabled student success, such as physical inaccessibility, attitudinal barriers like discrimination and a lack of awareness of disability, a lack of programming to support the secondary to postsecondary transition, financial and transportation barriers, and inaccessible curricula, among others (Lindsay, Cagliostro, & Carafa, 2018; Mullins, & Preyde, 2013). Instead of adopting a systemic approach to widespread institutional accessibility, many universities attempt to mitigate these barriers with an individual accommodation model that relies upon disclosure, medical documentation, and self-advocacy for students to gain access to their legally entitled rights to non-discrimination in education. While there has been substantial critique of the accommodation model as a whole (Dolmage, 2017; Griful-Freixenet et al., 2017; Hutcheon & Wolbring, 2012; Mullins & Preyde, 2013; Wood, 2017), this critical analysis has not yet comprehensively informed the literature on self-advocacy. This paper opens with a critique of the conscious, unconscious, institutional, and systemic manifestations of ableism in the self-advocacy literature, and then reports results from a qualitative study that sought to 'politicize' self-advocacy and challenge these ableist conceptions.
The disabled student self-advocacy literature presents the instruction of self-advocacy skills to disabled students as vital to their success (Ciccantelli, 2011; Hadley, 2006; Kinney & Eakman, 2017; Parks & Schulte, 2009; Walker & Test, 2011), with D'Alessio and Osterholt (2018) and others going as far as to credit self-advocacy as "the most important foundational skill" (p. 1) for disabled student success in higher education. While intending to benefit students, this body of literature is troubling in a number of ways. One trouble is that the literature promotes a skills-deficit model that sustains negative views of disability (Bruce & Aylward, 2021; Karpicz, 2020; Zuber & Webber, 2019). For example, D'Alessio and Osterholt (2018) state "some students will struggle to achieve the skill of self-advocacy. Reasons vary as do students, but a general hypothesis may be attributed to a developmental lag in students who learn differently" (p. 5). This hypothesis locates a skills-deficit within disabled students and attributes this to their impairment. White et al. (2014) similarly comment that a "lack of self-awareness… may lead [disabled] students to either refuse to access support services or request inappropriate accommodations" (p. 230).
The widely proposed solution to this perceived disabled student skills-deficit is the provision of skills-based training (e.g., Kimball et al., 2016; Walker & Test, 2011; Parks & Schulte, 2009; Ciccantelli, 2011; Hadley, 2006; Kinney & Eakman, 2017). Many articles on student self-advocacy report findings from programs that teach students the skills needed for self-advocacy or investigate the self-advocacy skills already possessed by students (e.g., Daly-Cano & Newman, 2014; Palmer & Roessler, 2000; Walker & Test, 2011; White et al., 2014). These training programs employ in-person, online, and blended formats that range from several hours in duration to multiple day sessions with follow-up support. They tend to focus on components of successful self-advocacy, such as knowledge of self, communication skills, ability to negotiate, and conflict resolution (e.g., Palmer & Roessler, 2000; Walker & Test, 2011; White et al., 2014; Zhang et al., 2019). This approach to a perceived skills-deficit in disabled students reinforces an individualized model of problem identification and response.
Self-advocacy training commonly emphasizes individual student attributes with little recognition of the wider social context in which self-advocacy occurs. For example, D'Alessio and Osterholt (2018) list the following key attributes of successful student self-advocacy: goal orientation, reframing, persistence, goodness of fit, learned creativity, and a positive social network. All seven of these attributes pertain to factors within the student, none recognizing the institutional context in which students self-advocate. When literature does acknowledge the institutional factors that impact student self-advocacy, this attention is limited to (1) acknowledgment alone or (2) the incorporation of these factors within self-advocacy training, rather than any recommendations for systemic change to address them. Kinney and Eakman (2017), for instance, recognize rejection as a common part of the self-advocacy process and encourage the preparation of students for this reality, rather than identifying strategies for addressing rejection at the level of faculty members so that it is less likely to occur. Other scholars recognize policy-level and logistical barriers that necessitate self-advocacy, but do not make any recommendations to address or change them (e.g., Palmer & Roessler, 2000; Parks & Schulte, 2009). Overall, there is a significant lack of attention to self-advocacy within a wider institutional context, including "the conditions that make self-advocacy necessary, as well as the structural and attitudinal barriers that coalesce to shape whether student self-advocacy will be effective" (Karpicz, 2020, p. 139). As Fleming, Oertle, and Plotner (2017) put it, "The response… that students need self-advocacy and self-determination skills… fails to acknowledge the role and responsibility of faculty and staff; implying that… [barriers] are the students' problem - not the university's" (p. 322).
Another limitation of student self-advocacy literature is that disabled students are rarely involved in the research beyond their role as research participants, an absence that has been noted across the domains of postsecondary education scholarship (Hutcheon & Wolbring, 2012; Lillywhite & Wolbring, 2019). This literature often fails to recognize and engage with the active bodies of scholarship on disabled people's leadership and/or meaningful involvement in studies that affect them (Armstrong et al., 2019; Lester & Nusbaum, 2018; Oliver, 1992), as well as specific literature on partnering with disabled students in pedagogical research (Brown et al., 2020; de Bie, 2020; Marquis et al., 2016; Rattray, Raskin, & Cimino, 2008). The present study builds on some recent self-advocacy literature that is heading in this direction. For example, the work by Zuber and Webber (2019), which prioritizes the inclusion of autistic students in studies about them because this group "provides valuable educational insights and often challenges assumptions, stigmas and stereotypes of autistic individuals" (p. 114), as well as self-advocacy research conducted by disabled students as part of their graduate training (e.g., Bruce, 2020; Bruce & Aylward, 2021; Karpicz, 2020).
These critiques - that the self-advocacy literature promotes a skills-deficit approach to disabled students, seeks to resolve this deficit through an individualized approach of skills-based training, fails to recognize the broader social context in which self-advocacy occurs, and rarely involves disabled students as meaningful partners in related research - arise out of a recognition of ableism. In response to these limitations of the self-advocacy literature, this research draws on concepts from Critical Disability Studies to 'politicize' self-advocacy and challenge underpinning ableist conceptions.
This paper is anchored in two key Critical Disability Studies concepts: ableism and politicization. Ableism is defined as "a belief system… that sees persons with disabilities as being less worthy of respect and consideration, less able to contribute and participate, or of less inherent value than others" (Law Commission of Ontario, 2012, as cited by Ontario Human Rights Commission, 2018, p. 19). Campbell (2001) further characterizes ableism as "a network of beliefs, processes and practices that produce a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human" (p. 44). This standard for recognition as 'fully human' applies both to how one looks (appearing in a way that fits within the norm) and how one functions (capacity to communicate and be fully productive in normative ways), and thus applies to all forms of embodiment including visible and invisible disability. Upholding one way of being 'human' positions all other bodies as incorrect or less-than. Scholars have engaged with ableism as an analytical tool to understand disabled students' experiences, analyze postsecondary policy, and inquire into the sociocultural production of ability - or dominant conceptions of the 'normal' and fully human body - in postsecondary education (Hutcheon & Wolbring, 2012). In a similar way, this paper uses ableism as a tool to examine student self-advocacy in the postsecondary education context and identify contradictions between the system in place and disabled student experiences of what they feel is possible and in their best interests.
Politicization, as a second conceptual anchor in this paper, "remains a poorly defined concept" (Curnow, Davis, & Asher, 2019, p. 719) that is taken up in many ways. In their examination of the politicization process of a student activist group, Curnow, Davis, and Asher (2019) describe a number of components pertinent to the present research study. These include the recognition of politicization as involving the consciousness-raising, learning, and integration of equity-related critiques into the work (e.g., those related to ableism). Politicizing practices also encompass those that "shift the power dynamics and prefigure other social relations" (p. 730), for example, practices that allow marginalized people to contribute their perspectives, shifting a group's overall goals. Recognizing shared experiences as a source of knowledge and site of theorization and moving away from academic discourses that do not align with a group's political analyses can be vital to politicization. Enacting concrete changes that "reflect and reinforce the politicized concepts that emerged" (p. 745) is also important. Following from this description, the current study understands politicization to involve: (1) the integration of Critical Disability Studies concepts and associated political analysis to identify and examine ableism as it relates to student self-advocacy; (2) recognizing disabled students' lived experience as an important and instructive form of knowledge; (3) valuing disability community supports; and (4) shifting power dynamics and institutional practices in postsecondary education in light of these analyses, knowledges, and community resources. This process of politicization can identify and challenge the ableism inherent in the current self-advocacy model and illuminate alternative approaches to support in postsecondary education.
Project Context and Methodology
This study was conducted at McMaster University in Hamilton, Ontario, Canada, a research-intensive university located in an urban centre. The student population is approximately 33,000, with 3087 students registered in 2018-2019 for academic accommodations with our disability services office (A. Drew-Hassling, personal communication, May 23, 2020). At our institution, the accommodation process is outlined by senate-approved policy, with noted roles and responsibilities for instructional staff, the disability services office (formally referred to as Student Accessibility Services on our campus), students, and other campus partners (McMaster University, 2020). While we have provincial accessibility legislation, the Accessibility for Ontarians with Disabilities Act, 2005, that mandates the more proactive mediation of institutional accessibility barriers, some of which pertain to the postsecondary learning environment (e.g., requirements to provide material in alternative formats), the accommodation policy remains the most significant procedure for having students' legally protected educational rights and needs met. Paramount to the accommodation procedure is the individual negotiation that occurs between students requesting accommodations and the instructor responsible for providing them.
Disabled Student-Led Research Design
One way this project politicizes self-advocacy is by seeking to prevent "research as alienation" (Oliver, 1992, p. 103) where disabled people are relied on as the subjects of research by nondisabled researchers instead of as partners in the research process. As a disabled student-led project the study thus responds to Wood's (2017) articulation of the "ethical demand" to foreground disabled student perspectives "in all discussions of pedagogies aimed at improving access and inclusion" (p. 266).
This project originated out of a first-year paper focusing on how disabled student activism and advocacy leads to policy change on campus. The original paper divided these activism and advocacy efforts into three broad protest methods: conflict-based protest, bureaucratic protest, and self-advocacy as a form of protest. When I (Emunah) originally read self-advocacy literature that did not feel true to my experience, I talked to several disabled schoolmates and they agreed that self-advocacy literature did not reflect their experiences either. My discussions with classmates and reflection on my own experiences led me to realize that there was a need to investigate student experiences of self-advocacy in a way that would allow students to critique the system. Consequently, I conducted this project as a disabled student-led initiative, collaborating with a disabled instructor/staff member to ensure that the methods we used throughout the research project were critical and informed by disabled perspectives. I received informal feedback from interview participants that they felt more comfortable sharing their negative experiences with somebody who was also navigating the postsecondary context with a disability and was registered with the same disabled student services as they were. My familiarity with and shared frustrations regarding the expectations of the university helped me to relate with students and understand their experiences. I am connected to disabled student community and have heard students' stories of difficulty navigating the institutional landscape since I set foot on campus. It was important to me to bring this student perspective on the self-advocacy process forward.
In addition to understanding student perspectives and contributing these to the self-advocacy literature, the initial project design also sought to draw on student experiences and recommendations to develop a 'politicized' educational workshop. Due to space restrictions and students' overall critique of addressing their concerns via student education as opposed to systemic change, only brief highlights from these critiques/recommendations are described within the project findings below.
The following research questions guided the project design and analysis: How do disabled students understand self-advocacy and describe their experiences, successes, barriers, and frustrations related to advocating for themselves? What might it mean and look like to politicize self-advocacy? For the purposes of the study, self-advocacy was defined as (1) using your knowledge of self and legal rights to effectively communicate needs and negotiate support from the university; as well as (2) the ability to resolve any conflicts that come up in this process. This definition was synthesized from the self-advocacy literature. While students often focused on self-advocacy within a school context (e.g., professors, disability services office), sometimes this broadened to include self-advocacy in other related contexts (e.g., healthcare).
The study was reviewed and cleared by the institutional research ethics board. Any student at this institution who self-identified with disability (broadly conceived) was eligible to participate. Students were recruited by emails sent to all departmental administrators for distribution to their student mailing lists, the disability services office newsletter sent to students registered for accommodations, as well as by social media posts from the disability services office, equity and human rights office, and the student union-run peer support services for disabled and 2SLGBTQ+ students.
Semi-structured interviews lasting 20-90 minutes were conducted with 12 disabled students. Unfortunately, one interview was lost due to a technical recording error and only 11 interviews were analyzed. All individuals who expressed interest in the study and followed up to set an interview time were interviewed. The inclusion of only 11 participants is not atypical of qualitative research, but a recognized limitation nonetheless. This is discussed further in the limitations section of the paper.
Example interview questions included the following:
- What does self-advocacy mean to you or look like in your life? How would you define or explain your idea of self-advocacy to somebody else?
- Think of a specific time that you advocated for yourself on campus. Can you describe it to me?
- What gets in the way or prevents you from self-advocating? What barriers do you experience?
- Have you had any negative experiences while self-advocating on campus? If so, what made them negative?
- Have you had any particularly good experiences with self-advocacy that you would like to share?
The 11 participants included in the analysis came from Faculties across the university (Engineering, Health Sciences, Sciences, and Social Sciences, as well as the Arts & Sciences Program that sits outside of a Faculty), with four from Social Sciences. Ten participants were undergraduate students, and one was a graduate student. Ten participants were ages 18-24 and one was in their early 40s. Five participants identified as white, two as East Asian, two as multiracial (Black, Indigenous, and white; European and Indian), one as West Indian, and one as Ashkenazi Jewish. Six participants identified as female, one as male, and four as other genders including Two-Spirit, nonbinary, and genderfluid. Three participants identified as heterosexual, one did not disclose, and seven identified non-heterosexual sexual orientations including gay, bisexual, pansexual, and queer. Five students identified themselves as middle class, three as working-middle or lower-middle class, two as upper class or affluent, and one as working class.
Disability experiences included those related to mental health disability (7), neurodevelopmental disability (3), physical disability (3), chronic illness (2), and learning disability (1), with five students identifying with multiple categories. All of the participants indicated that their disability was always invisible or only occasionally visible. This included impairments with invisible physical manifestations (such as chronic pain conditions) and those with invisible mental manifestations (such as learning disabilities). While some participants complicated the notion of 'in/visible' disabilities and the ways in which their disability manifests to others, invisibility played a significant role in how most students experienced and understood ableism on campus and chose to navigate self-advocacy.
The interviews were audio-recorded and transcribed verbatim. The transcription process enabled an initial form of analysis through close attention to the data and notetaking on emerging themes (Bird, 2005). Coding was then completed using a variant of constant comparative analysis where categories are created and compared to each other and the broader data set in three phases - open, axial, and selective coding - until a theory emerges (Merriam & Tisdell, 2016). Initial codes developed over the course of transcription and a close line-by-line reading of a sample of complete transcripts led to the creation of a preliminary coding framework that was revised through discussion and testing on a sample of transcripts. Subsequently, Dedoose, a web-based qualitative analysis software, was used to apply the revised framework to each transcript. Over the course of this process, several codes were removed, absorbed, or broken down further when they had too many or too few excerpts to be meaningful. Finally, each code was analyzed and examined for how they related to and informed one another. Throughout the process of analysis, discussion, manuscript preparation, and engagement with the literature and theoretical framework, the relationships between codes were discerned and reconceptualized through two overarching categories: (1) the 'right way' to self-advocate; and (2) students' 'better way' of negotiating self-advocacy and disability on campus.
The 'Right Way' to Self-Advocate
Participants perceived that there were particular norms for negotiating disability in the university, together comprising a felt sense of a 'right way' to self-advocate. This 'right way' included four components: expectations that they (1) register for formal accommodations, (2) embody visible/physical disability, (3) perform a 'less disabled' version of themselves, and (4) make those to whom they are self-advocating comfortable. Registering for formal accommodations is the only one of these expectations officially required by the university's academic accommodation policy (McMaster University, 2020). Students have picked up these other expectations through their experiences of self-advocacy.
Registering for Formal Accommodations
One component of self-advocating in the 'right way' involved formally registering for accommodations with the disability services office. Participant 6, for example, felt that they needed to validate their disability status to the office through medical documentation before asking professors for support. They learned that "if you just kinda state, 'I'm with [the disability services office],' most profs will just be like, 'Okay, that's fine'". Similarly, Participant 4 explained:
a student can say, for example, I'm registered with [disability services office] and then I think subconsciously the professor will say, "so there's been all this, you know, the diagnosis is there, there's been all this formal assessment, y'know student is being true and does need some sort of accommodation".
Being able to identify oneself as formally registered for accommodations was seen by some students to mediate professor doubt or suspicion by offering 'proof' of the student's disability and legitimizing their claim to disability entitlements. In contrast, Participant 9 explained how even with documentation in their accommodation file attesting to their disability, they still sometimes encountered disbelief or questioning of their disability or the legitimacy of their disability-related accommodation requests:
I think people get that messed up in their head that they're like, "Oh, well, I can't just take your word for it, I have to confirm for myself that you really can't do this" … It's like, "No, you don't because I provided documentation [of disability] that said I couldn't do this". So yeah, that's, like, the biggest one for me. It's advocating for people to believe that because it says on my paperwork that I have a disability.
Additionally, although registering for formalized accommodations was perceived as the university's 'right way' to self-advocate, students found it frustrating that there were disability-related barriers to a system supposedly for disabled students. Participant 8, for example, explained how the accommodation system was difficult to navigate while nonverbal or experiencing memory loss, sharing a story where they forgot to bring some paperwork to a meeting with the disability services office. The staff member yelled at them, leaving them in tears and feeling blamed for their symptoms. As they explained, "sometimes… the reasons I may have not been able to communicate properly or forgot to bring paperwork or things like that were disability related reasons."
Registration for formalized accommodations through the provision of disability documentation was perceived to be the 'right way' to self-advocate within the university environment because it had the potential to mitigate suspicion, distrust, or disqualification of students' requests for disability-related support. Although registering for formal accommodations with the disability services office is a mandatory step in following the university's academic accommodations policy (McMaster University, 2020), many students seemed unaware of this requirement, with only two mentioning policy at all, albeit briefly. Students instead felt that the ways in which this expectation manifested was a kind of commentary on their trustworthiness. They also described the registration requirement as a limited and, at times, inaccessible approach.
Embodying Visible/Physical Disability
Some students felt that during self-advocacy there were expectations or desires for them to be visibly and physically disabled and to provide extensive explanation if their disability was less overtly perceptible and 'verifiable' to others. Students with invisible disabilities, especially mental health disabilities, often encountered delegitimization of their need for support and/or expectations of disclosure and explanation. Participant 7 described:
I think there's an assumption [by professors] about my capabilities… "You look fine! So you must be fine, and so, screw you [and your accommodation request]" … There's in general a lot more empathy for people who have visible disabilities.
This led to some participants feeling like they had to explain details of their disability. For example, Participant 1 elaborated why they often provided further disclosure during self-advocacy:
having an invisible disability… when I don't disclose that information a lot of times people have a hard time understanding why I have these accommodational needs just because they don't see anything and so they may not believe it and so kind of giving them a reason and a way of understanding why I have this piece of paper.
For some students like Participant 7, these expectations led to self-doubt: "I almost feel like I question whether I should be asking for help when people say, 'You don't look like there's anything wrong'".
Two participants who move between visibility and invisibility of their disability status and occasionally use mobility aids, mentioned that it was easier to get support when visibly disabled and using their mobility device (P8, P11). Participants who experienced both physical and mental health disabilities mentioned that they tend to focus their self-advocacy around their physical needs even when the actual request is associated with a nonphysical symptom (P6, P7, P11). As Participant 11 reflected, "I usually talk only about the physical ones when I'm trying to advocate for myself, which I didn't realize until I was self-reflecting. It's like, shit! I do do that a whole lot".
These experiences suggest the perceived 'right way' to self-advocate within the existing system understands disability narrowly, prioritizing visible and physical disabilities. Osborne (2019) theorizes this phenomenon using the conception of 'epistemic injustice', an epistemological form of ableism, to describe the ways in which a disabled student's bodily reality (and associated knowledge of their needs) is denied through accusations of 'faking' when their perceived appearance does not match limited public understandings of what disability 'looks' like. Similar to the participants in the present research, disabled students in Osborne's (2019) study were compelled to challenge assumptions that they might be lazy or faking their condition to gain accommodations when their disability experience was not visibly perceptible and thus believable by others.
Performing Less Disabled
Some participants felt like the expected 'right way' to self-advocate included performing a less disabled version of themselves because professors seemed more willing to accommodate if they did so. As Participant 4 explained:
I would say the vast majority of professors, especially if you do have the accommodation [through the disability services office] and give advance notice, which is also tricky, but a lot of professors will… honour your accommodations, given that you do it within kind of how they like it?
The particularities of this expectation to "do it…how they like it" differed between students but most participants talked about this expectation in some form. Participants felt that professors want extension requests in advance even if, due to disability, a student is "physically incapable of doing that" (P4; related comment from P10), only one request for accommodation during the term (P4, P10), and for students to only need one kind of accommodation (P2, P4). These criteria expect students to minimize their accessibility needs and to 'control' and 'predict' their disability so that they can carefully plan their requests, disregarding students' embodied experiences of disablement. This can be incredibly difficult for students to do, particularly while negotiating the disability phenomena that prompt the request in the first place. As Participant 3 explained, "if my disability is flaring up… then I have a really difficult time [self-advocating] because I'm dealing with those symptoms… and then having the added barrier of having to explain to somebody that I'm dealing with that".
Students perceived other professor preferences to include a desire for students to build a relationship with them prior to self-advocating (P2) and to self-advocate in person rather than through email (P1). These criteria require students to perform normative social skills of only making requests from people with whom they have a relationship (thus expecting class and office hour attendance to build this relationship) and utilizing a communication method that allows the professor to visually inspect the student instead of the form of communication most accessible to the student. In discussing these examples, students seemed to express a sense that accommodations were more likely to be denied or challenged if they were unable to perform this 'less disabled' version of themselves.
These examples suggest that students are feeling expected to 'simplify' and perform a more predictable version of their embodied reality, a common request of disabled people. As Sheppard (2020) explains, many (particularly invisibly) disabled people feel "a pressure to perform as normal, or as close to normal as possible; to forcibly re-orient themselves in normative (or normatively non-normative) ways" (p. 42). Boucher (2017) also notes that this comes across through "downplaying both the significance of their impairment and the degree of oppression that came with their disability… to make their disability (or at least the consequences of it) disappear as much as possible" (p. 1028). In their work on disabled students' negotiation of the accommodation process, Barnar-Brak, Lectenberger, and Lan (2010) similarly observe the theme of students downplaying disability in order to pass as able-bodied. In their data, students minimized their disability by opting not to access accommodations, while in the present study, students felt compelled to minimize their disability in the very act of requesting disability accommodations. Disabled students in a self-advocacy study by Bruce and Aylward (2021) likewise comment on this irony of a system that agrees to recognize and accommodate disability while simultaneously requiring its disappearance. This finding raises a contradiction wherein on the one hand students are more readily received when performing a less disabled version of their needs, while on the other hand they are still expected to be perceived as (visibly/physically) disabled enough to be deserving of accommodations, as discussed earlier. Asking students to contort themselves to this contradictory set of standards maintains a problematic and narrow understanding of disability and can be incredibly challenging for students. Indeed, performing or 'passing' as normal can have negative physical and psychological impacts on the person attempting to pass, though it may also reduce experiences of stigma and overt ableism (Spratt, 2019).
Making Others Comfortable
Students perceived an important part of the self-advocacy process to be their approach to negotiation, with participants mentioning the felt obligation to be "charming" (P4) and to reduce the discomfort of the people to whom they were self-advocating (P3, P7). As Participant 7 explained, "I don't want to… make them [professors] feel uncomfortable". Students also de-emphasized their legal entitlements by asking 'nicely' for what they needed instead of telling the professor that they were required to provide accommodations (P1, P3, P6, P9). This was described as taking a "kind of collaborative approach instead of… fighting" (P9) or "asking them instead of telling them" (P1). Participant 8 developed this practice of "how to be a bit more diplomatic… in terms of… advocating for myself with different people in the university" by learning from negative experiences and shifting their approach to elicit a more positive response. Students also felt the need to put the blame on themselves and their disability rather than the professor's inaccessible course design to prevent the professor from feeling bad (P1) and come with a proposed solution to the learning barrier they were facing (P11). Two participants (P8, P11) discussed trying hard not to cry in self-advocacy meetings so as to avoid upsetting the professor and increase their chances of receiving accommodations. Participants also talked about feeling the need to be dressed professionally in self-advocacy meetings to avoid raising doubt in the legitimacy of their request and causing discomfort for those to whom they were advocating, even when other clothing may be more comfortable or accessible to them (P3, P11). As Participant 11 explained:
Okay, it's awful to say, but I have my outfit that I wear… my slightly preppy outfit of "Please take me seriously". I'm wearing a collared shirt and a sweater so I'm appealing to the cultural norms of things that emphasize that you should be listening to me.
Another way that students felt they were expected to make others comfortable during the self-advocacy process was through disability disclosure. Participant 1 explained that they need to be "providing [professors] with clarity surrounding why [the student is] asking them for everything" (P1; related comment from P3). Disclosure was seen to speed up the accommodation process and help students avoid getting unnecessary or ableist questions. As one student elaborated:
choosing to disclose, the reason I did that was 'cause I figured they can't help me if I don't disclose fully, based on the fact that they don't have an accessible system in place already… you kinda have to disclose everything if you want help. (P9)
Students felt as though they had to disclose to validate that they were experiencing a real issue or provide context for the request (P1, P4, P5, P7) and so that the professor would feel as though they know how to help (P4, P11). However, oftentimes this disclosure was accompanied by fear that additional information may not increase professor understanding of disability but result in them making incorrect assumptions, misunderstanding the student's experience, and implementing less individualized and helpful accommodations.
We might see these expectations as requiring students to engage in emotion work. This term is used to describe the hidden work to maintain their own composure even when justifiably emotional in the face of ableism, and to manage the emotions of nondisabled people by "bear[ing] the majority of the burden for insuring the interaction goes smoothly" (Frederick, 2017, p. 132; also see Wilton, 2008). Dolmage (2017) characterizes these 'affects' of accommodation as a form of 'tone policing', "where students are encouraged to perform the role of gracious, thankful subject, to praise good professors and administrators and never complain" (p. 81). Disabled students in the study by Bruce and Aylward (2021) similarly described a series of 'expected' behaviours when engaging in self-advocacy, such as politeness, compromise, concession, compliance, and perception management (e.g., careful and intentional approaches to avoid being perceived as 'annoying' or an 'imposition').
In summary, students perceived there to be an institutional 'right way' to self-advocate that would enhance the believability of their disability and associated accommodation needs and the other's comfort in responding to their request, thereby increasing the chance of a positive response and minimizing the risk of additional ableism. These expectations were themselves expressions of ableism: the denial of disabled students' embodied realities through distrust, suspicion, and misconceptions of disability; pressure to perform as 'normal'; and the burden of emotion work to ensure smooth interactions with nondisabled people. While students talked about these expectations as problematic, they also made the calculated decision to follow the 'right way' of self-advocating at times.
Students' 'Better Way' of Negotiating Self-Advocacy and Disability on Campus
As students identified expectations for a university-preferred 'right way', they also described their own 'better way' that was more aligned with their priorities and experiences as disabled students. This 'better way' included three strategic methods of navigating the self-advocacy system through: (1) weighing the effort and worth of self-advocacy to prioritize time and energy; (2) reducing emotional exhaustion through incremental disclosure and 'settling'; and (3) utilizing disability community and collectivizing concerns. It also included alternative ways of responding to disability on campus as a whole, outside of the limited self-advocacy model, by: (1) focusing critique on institutional inaccessibility; and (2) shifting responsibility towards the institution. Taken together, these critical alternatives challenge the ableism students felt from the expected 'right way' to self-advocate and associated physical and emotional repercussions, and provide generative insights for politicizing self-advocacy.
'Better Way' of Negotiating Self-Advocacy
Weighing the Effort and Worth of Self-Advocacy to Prioritize Time and Energy
A significant component of students' experiences of a self-advocacy system entangled in ableism was how much time and energy these negotiations consumed. When asked specifically about the time required, many participants found it difficult to estimate, with some explaining that it takes "too much" time (P4, P9). When participants did provide a unit of time, this ranged from one hour per semester (P2) to four hours a day (P3), recognizing that the time required varies day-to-day and throughout the semester and is dependent on the initial answer one receives to an accommodation request. Some students considered self-advocacy planning, preparation, follow-up, and dealing with associated emotions as part of the time commitment. Many answered questions about time by talking about the effort or energy expenditure required (P1, P3, P4, P5, P10), saying things like how academic self-advocacy "takes the most time, the most effort, and the most internal resources" (P3). Another student explained, "if I use energy on this thing [self-advocacy] then I don't have energy for a lot, for everything else. But that isn't technically taking up time, it's just distributing energy" (P5). This association between time, effort, and energy is important: even a student who may only self-advocate for one hour in the semester may have a high effort or energy expenditure.
This depletion of internal time/energy resources made self-advocacy an exhausting process for participants. They reported that using resources for self-advocacy could mean that they would not have enough time/energy to meet their own basic needs. Some students discussed "figuring out the math" to determine if it is "worth my time, worth the energy" (P4). Participant 1 explained the consequence on schoolwork, saying that due to disability, "it does take a lot longer to complete schoolwork or do readings, and finding additional time to meet with an instructor to talk about accommodations can be hard." Participant 7 also described how self-advocacy impacts their pain and embodied wellbeing; the time involved in attending a self-advocacy appointment is one thing, recovering from the aftereffects (time/energy or pain and compromised wellbeing) is another:
I find that if I'm in a really emotionally taxing [self-advocacy] situation, I have a lot of extra pain afterwards… one crappy thing about having to approach professors to ask for extensions… [is that afterwards, I] have a few days where I'm like, I feel like hell! And then I have to recover from [the stress of the self-advocacy] and I shouldn't have to do that.
The process of recovery from self-advocacy may involve staying home, missing classes, and/or requiring extra time for assignments, which then necessitates additional self-advocacy to make arrangements for these needs. In light of these considerations, students described carefully weighing the risks, possible benefits, and potential aftereffects of self-advocacy to determine its overall worth to them in terms of its impact on their time/energy.
The disparity between student prioritization of time/energy and the expectations of the self-advocacy system was particularly apparent in an example Participant 5 shared where their personal solution to an academic issue took more time than self-advocacy would, but much less energy. Instead of having to plan and attend three self-advocacy meetings with different services about access to medication on campus, this student decided it was easier to drive an hour away each month to pick up their medication off-campus. They resisted the self-advocacy system by refusing to engage in it. The 'better way' for some students to negotiate self-advocacy situations is to prioritize their energy expenditure over time requirements, thereby minimizing the detrimental aftereffects of the self-advocacy process.
Reducing Emotional Exhaustion through Incremental Disclosure and 'Settling'
The self-advocacy process conjured mixed emotions for students, the majority negative (with over 100 tagged excerpts in this subcode). The most common of these were feeling scared, blamed, ashamed, worried, frustrated, and generally feeling bad. Students also discussed feeling guilty, vulnerable, uncomfortable, sad, and resigned. Many students mentioned social anxiety-related disabilities as incongruent with the self-advocacy system because of the anxiety-inducing need for students to initiate the process and discuss accommodations with each professor. These repercussions to negotiating self-advocacy procedures are examples of the psychological and emotional effects of ableism on disabled people (Reeve, 2002).
As previously discussed, students' perception of the 'right way' to self-advocate required disclosure to the disability services office and professors. However, many participants found that disclosure had a negative emotional impact on them, which led them to make strategic disclosure decisions rather than fully participate in these perceived expectations. Most students felt uncomfortable with disclosing details of their disability or needs for several reasons, including discomfort and fear of disclosing to a stranger (P2, P4, P10, P11), entitlements to privacy (P3, P9), the emotional vulnerability of disclosure (P6, P11), a seeming lack of care and concern from professors (P7) and worry about stigmatization (P10). Participant 10, for example, was worried about being perceived differently because of the disclosure involved in making an accommodation request, asking themselves questions like, "Are they going to look at me differently? And they're gonna know an aspect of my identity that maybe they wouldn't have thought otherwise". Another student explained, "I definitely would never choose to disclose things… it's the painless way, I guess, but still painful 'cause nobody wants to talk about that" (P9). Participant 11 was particularly uncomfortable disclosing to a professor who was already responding negatively to their request for accommodation:
I did not feel comfortable being that vulnerable in front of someone who was making me feel like shit… They don't need to know this, I don't need to share this information with everybody and that's a choice I can make.
Students managed these decisions by developing 'levels' of disclosure that they moved through, often preferring to stay in the lower levels because of the vulnerability and negative emotional repercussions of forced disclosure. For example, students disclosed to professors that they were registered with the disability services office (P9) or the category of their disability (e.g., learning disability, neurodivergence) (P1), without disclosing a diagnosis. Participant 3 held firm boundaries, opting against disclosure entirely. In discussing an experience in the disability services office where they refused to disclose but were repeatedly asked questions that appeared to be looking for disclosure, they said, "I do not consent to the disclosure of my disability and my diagnosis. So that question is like, 'I'm not going to answer that question'".
These findings echo those of Grimes et al. (2019) that recognize how disabled students' non-disclosure decisions, while often difficult to negotiate, demonstrate careful reasoning and weighing of potential impacts. Barnar-Brak, Lectenberger, and Lan (2010) similarly refer to disabled students' practices of 'scripting' their disclosure where they carefully select and limit information for disclosure to increase the comfort of faculty members and themselves. Karpicz (2020) conceptualizes refusal, and choices not to disclose particular information, as a form of self-advocacy, rather than an indication that self-advocacy is not being 'properly' performed.
When deciding if and how they would self-advocate, participants thought deeply about the potential emotional ramifications. Participant 4 explained:
[T]here's the emotional, there's all the time festering of, I know I need to do this, but should I? How do I do it? When's the best time to? And talking myself up to do so and getting emotionally ready to go into that person's office.
In some cases, students prioritized their emotions over their academic success, choosing to settle for what was available to them instead of self-advocating for something more appropriate. It was clear in these interviews that students felt the emotional strain of self-advocacy and decided to accept unideal situations instead of going through the emotional harm of the self-advocacy process. This showed up in several overlapping ways. For example, students described taking partial accommodations instead of continuing to advocate for the full extent of what they needed:
I asked a professor for an accommodation and I asked for two weeks and they only gave me one week instead… but in the end, I'm glad that they were still able to offer me some alternative as opposed to none. (P10)
Students sometimes decided that accepting a lower grade - such as by taking a late penalty or not completing some work - was better than self-advocating: "I've taken hits on my grades because I couldn't hand something in and I could've very easily just emailed my prof, said I need a couple more days… and I just didn't" (P6). While this participant referred to emailing their professor as easy, their choice not to engage in this self-advocacy suggests that it involved some level of difficulty for them. Several students opted out of self-advocacy entirely: "I don't like self-advocating so I don't do it much and therefore I don't face issues. Can't fail if you don't try" (P2).
Many students either considered dropping courses or did drop courses because they could not manage the self-advocacy required to stay in the course and do well, with one student needing to drop 18 units (the equivalent of six one-term courses) in one academic year. As Participant 7 explained, "there's been a lot of times where I've thought about dropping courses because I was in a bad spot and something was overdue". Notably, dropping a course because of inadequate accommodations can pose a financial burden and impact eligibility for student loans, thus the 'settling' options available to students are interwoven with their socioeconomic status and other aspects of their social location. In response to recurring difficulties with specific professors, students also described delaying registration and completion of certain required classes taught by these professors. Additionally, some students moved away from using formal university services in favour of a peer support service, recognizing that this was not necessarily what they were 'supposed' to do but that these disabled student-run services were less emotionally difficult to interact with.
In these decisions, students were variously restraining the additional emotional work that would be required to further advocate for their needs, such as by reducing their aspirations for support, taking what they could get, or putting up with limited accommodations (de Bie et al., 2021). Students did not conceptualize these approaches to self-advocacy as a personal failure, and instead valued their prioritization of what was most important to them (i.e., their emotional wellbeing). Although all the participants in this study continued to be registered in school and so 'settled' in ways that maintained their overall enrollment, Karpicz (2020) describes related decisions to leave an academic program as an important form of self-advocacy for some disabled students facing persistent access barriers. These findings suggest that students have a sense of what their options are, as well as the difficulty of negotiating ableism throughout the self-advocacy process, and make decisions that avoid getting more deeply entangled in an exhausting negotiation to have their disability-related needs met.
Utilizing Disability Community and Collectivizing Concerns
Students valued the presence of the disability community on campus through the student union's disabled student-run peer support service. They found this and other forms of community particularly vital to their negotiation of self-advocacy and accessibility barriers on campus and resistance to associated ableism. Students shared knowledge and stories with one another, commiserating and learning, many appreciating the ability to have these conversations with people who "get it" (P11). Participant 3 explained, "sometimes you don't need somebody to teach you about self-advocacy, but you just need someone to hear about your horrible self-advocacy experience". Participant 9 likewise affirmed that disability community may not necessarily fix barriers but offers the emotional support required for engaging with self-advocacy and education systems.
Participants also relied on their friends who were registered for formal accommodations with the disability services office for commiseration about the process and a reminder that they were not alone. Participant 9 mentioned a "club-like bond", explaining it as "the eyeroll and the camaraderie" between these students. Students asked their disabled friends about the accommodation system before deciding to engage with it (P3, P5, P6). For example, Participant 3 "talked to other people… to help prepare me for that. Connected with people who'd graduated [from the university], who are still here, and asked how they went about it". This reliance on one another played a significant role in students sharing and figuring out their own better ways of navigating self-advocacy. Two participants also mentioned the positive impact of disabled faculty who were able to bridge university bureaucracy and what disabled students need on campus. In encountering difficulties with self-advocacy, some students mentioned receiving support from both disabled and nondisabled friends and family.
Disability community also helped students challenge the university's self-advocacy model through broader, collective advocacy. For example, Participant 9 moved towards broader advocacy through a sense of responsibility to other students: "by being students here, we are part of the institution and we are as responsible as anybody else to say something if something's wrong and… responsible for future students". As a response to a negative experience, Participant 3 explained that "when something doesn't go as I'd like it to, it makes me think there's an opportunity here for me to be assertive and kind of press this issue". They recognized the potential of collectivizing experiences: "I do think that a collective voice of individuals who have experienced similar things or who have a certain stance that they share in common on a certain issue - that is extremely powerful".
'Better Way' of Responding to Disability on Campus
Focusing Critique on Institutional Inaccessibility
Students extensively discussed the institutional barriers impacting their self-advocacy, focusing on the campus culture of ableism and inaccessibility, the disability services office, and their interactions with professors. The campus culture was perceived to be one of inaccessibility, where disabled students are not an institutional priority: "most courses aren't accessible and generally the university isn't designed with disabled students in mind" (P8). One expression of inaccessibility was the university's reliance on a self-advocacy model for accommodations, as Participant 9 explained: "ideally, self-advocacy wouldn't even be a topic because the system should just be accessible enough that you don't even have to ask…your needs should be anticipated". Students argued that greater institutional accessibility would relieve students of the "burden" (P3) of self-advocacy. Students experienced a lack of transparency, feeling as though the processes and resources available to them to facilitate their learning were hidden or difficult to access, and that they only gained access to this information later in their university experience.
The disability services office was heavily critiqued. Participants perceived disabled students' opinion of the office to be negative, having heard from others about the flawed system before becoming personally involved with it. Negative experiences included those related to the bureaucracy of the accommodations process, limited types of accommodations offered, and challenging experiences with the staff. Participant 3 explained that "navigating the accessibility department is quite [laughs] quite a feat". Several comments focused on the barriers students face in registering for accommodations when they lack medical access to documentation due to financial or healthcare barriers: "students sometimes that don't have a formal… diagnosis can struggle with that because they don't have that medicalized tool to validate their experience" (P4). For Participant 3, the requirement from the disability services office that medical documentation be from a doctor posed a significant barrier: "I do not talk to my doctor because she had made a lot of really inappropriate, stigmatizing, and harmful comments about my disability." Students also recognized that the office "just doesn't have the power that they need" (P9) to intervene when accommodations are refused by professors or when students need to interact with other services and departments.
Lastly, students described how interactions with professors had a huge impact on their self-advocacy. Students reported that professors sometimes had limited knowledge about accessibility and accommodation, held misconceptions about disability, failed to believe them, or, in some cases, denied their accommodations, resulting in negative self-advocacy experiences (Fleming, Oertle, & Plotner, 2017). Participant 7 explained that "there's sort of a sense with the professors who I've had issues with that I'm inconveniencing them, which is, frankly… bullshit". Participant 4 echoed, "there's a lot of perception [that] the students are lazy and don't time manage well and as a result, they'll fake it or something".
Students elaborated significant critique of these three areas - a campus culture of ableism and inaccessibility, the disability services office, and unaccommodating and stigmatizing professors - emphasizing how their self-advocacy negotiations occur within a wider institutional context and are not, nor should be, their personal responsibility alone. While students carefully chose how to participate in the self-advocacy model, and developed their own strategies for negotiating it, they recognized how change at these other levels (campus culture, accommodation policy and process, professor practices) would greatly affect their experiences and was beyond their personal control or responsibility.
Shifting Responsibility Towards the Institution
The self-advocacy literature pertaining to disabled postsecondary students commonly suggests the need for student training in self-advocacy skills (Ciccantelli, 2011; Hadley, 2006; Kinney & Eakman, 2017; Parks & Schulte, 2009; Walker & Test, 2011). However, participants critiqued this type of individualized, student-focused solution as reductive, focusing instead on training for recipients of student self-advocacy:
I understand that there's kind of something that we could do to support each other as kind of a band-aid solution, but honestly, everything I'm thinking of is kind of what could the university do for people who are on the other side of this advocacy work? (P1)
Moreover, some self-advocacy trainings for disabled students focus on teaching skills like assertiveness and conflict resolution (Daly-Cano & Newman, 2014; Kinney & Eakman, 2017; Walker & Test, 2011), but the present study suggests these 'endorsed' skills may not match the ones students are feeling expected to use to manage the comfort of faculty members and avoid conflict and subsequent emotional ramifications. Teaching students skills to enhance the effectiveness of their emotional work in negotiations with nondisabled people is also a troubling approach as students ultimately found this work burdensome and unfair.
Instead, students identified the need for a cultural shift within academia as well as systemic restructuring on local campuses. In response to the prompt, "What do you think could be done differently on campus so that disabled students don't feel alone, individually responsible, or guilty if self-advocacy doesn't work?", Participant 3 reflected, "I mean… There needs to be systemic and structural change." They were clear about this needing to happen quickly as the current pace of transformation is too slow: "it's not fast enough [laughs]. People are still waiting for you to change these things and still having to jump through those hoops while you're trying to change them" (P3). Given these largely institutional barriers, students suggested creating workshops and training for faculty members. They wanted instructors to have more information about disability along with practical information about accommodation and accessibility. Implementing these recommendations for systemic change and faculty training may reduce the need for students to engage in self-advocacy.
Discussion: Politicizing Self-Advocacy
These findings - about the ableism students experience within the perceived 'right way' to self-advocate, associated physical and emotional repercussions, and students' resistance and proposed alternatives - contribute to the self-advocacy literature by offering insights into how self-advocacy might be politicized. Below, three aspects of politicizing self-advocacy are discussed: (1) recognizing ableism and the harms of self-advocacy; (2) affirming disabled student knowledge and community; and (3) enacting disabled student visions for change. By politicizing self-advocacy, we can challenge ableism and support students' envisioned and enacted 'better way' of responding to disability on campus.
Recognizing Ableism and the Harms of Self-Advocacy
Core to the politicization of self-advocacy is the integration of a Critical Disability Studies analysis to recognize the ableism embedded in self-advocacy and associated harms. Rather than endorsing self-advocacy as a positive, "foundational skill" (D'Alessio & Osterholt, 2018, p. 1) for student success - as often occurs in the conventional student self-advocacy literature - or reinforcing a category of "good disabled students" (Bruce, 2020, p. 428) composed of those who utilize these skills, this study has emphasized the significant and harmful burden of self-advocacy on students and how this so-called 'skill' is often learned through distressing encounters.
When we use ableism as an analytical tool (Hutcheon & Wolbring, 2012) and extend analyses of emotion work (e.g., Frederick, 2017; Wilton, 2008) to the disabled student self-advocacy literature, deep ironies are uncovered: While the university frames the accommodation and self-advocacy process as straightforward - bring documentation, be approved for support, approach professors, and receive accommodations - this is often not how it plays out. Instead, students identified how expectations they perceived in the self-advocacy process often directly conflicted with their experiences and needs as disabled students. They felt there were expectations that students be nondisabled to ask for disability accommodations, non-anxious to engage in an anxiety-inducing process to ask for accommodations related to anxiety, and that they use time/energy to ask for more time (which is not always what they need to have more energy). These types of contradictions cause significant confusion and distress for students and require fatiguing work of negotiating a process that is, from their embodied experiences, inherently illogical and ill-suited to understanding and supporting their disability experiences.
Additionally, while our institution's formal academic accommodations policy does explicitly outline the requirement that disabled students register with the disability services office to access accommodations (McMaster University, 2020), the other three expectations students perceive as underlying the 'right way' to self-advocate (to embody visible/physical disability, perform less disabled, and make others comfortable) are not mandated in policy. Findings suggest that students are navigating the terrain of the policy with a felt sense that they hold additional obligations in bringing about successful outcomes through self-advocacy that are not - on paper - required. It is concerning that students' experience of the self-advocacy process is significantly more burdensome than the policy seems to acknowledge.
Politicizing self-advocacy would recognize the contradictions embedded in the self-advocacy system and the ableism these contradictions expose - for example, the contradictory expectation, based on ableist beliefs about the 'fully human' body, to be both 'believably' (visibly/physically) disabled and perform as nondisabled. Broader understanding and valuing of the variability of human embodiments and experiences would challenge these harmful expectations that disability be predictable, visible, comfortable, and convenient for those receiving students' self-advocacy. A politicized self-advocacy model would trust disabled students more, give them more control over disclosure of their disabilities, and allow them to decide if formal registration with the disability services office is a good choice for them.
Politicizing self-advocacy would require institutions and staff to reduce and eliminate expectations of the self-advocacy system that place unfair additional emotional and practical labour demands on disabled students and support them in prioritizing their time, energy, and emotional well-being. A politicized model would also make important information - such as the institution's formal academic accommodations policy - more transparent to students, particularly those registered for accommodations, so that they are aware of their rights and the official expectations of the university. Holding this information may help students in differentiating their 'actual' obligations from other forms of culturally expected emotional labour. It may also assist in their decision-making about whether, how, and to what extent they will participate in additional, ableist expectations to manage the comfort of others, and potentially assist students in making the decision to resist this system. Information about the policy, and about students' strategies for negotiating self-advocacy and other components of the policy, may open possibilities for critique and alternatives.
Affirming Disabled Student Knowledge and Community
In contrast to the deficit-based framing of disabled students in the self-advocacy literature, this study emphasizes students' creative and skillful approaches to reworking (and refusing) the system when confronted by institutional barriers. A politicized conception of self-advocacy would affirm these lived experiences and practices as important and instructive forms of knowledge. Politicizing self-advocacy would also involve supporting disabled students in building and finding disability community (e.g., Agarwal, Calvo, & Kumar, 2014; Autistic Self-Advocacy Network, 2013; Chiang, 2020; Cory, White, & Stuckey, 2010; de Bie et al., 2020). Students in this study highly valued disability community and sharing and collectivizing their concerns with others, opportunities often missed by the self-advocacy literature's common individualizing approach to personal skills development and family/friend support. This kind of community care is "a crucial form of micro-resistance: actualizing democratic practices and sustaining ourselves both in activism and academia" (Nishida, 2015, p.153). Student creation of informal disability networks also speaks to the limits of the formal services provided by the university and to the capabilities of disabled students, often under-recognized in self-advocacy literature, to advocate for their needs.
Enacting Disabled Student Visions for Change
Lastly, politicizing self-advocacy would require responding to disabled students' visions for change. Students in this study drew attention to the role of the institution in student self-advocacy, and the need for institutional change to facilitate more accessible postsecondary education. Their accounts also expose significant institutional disconnects between the written accommodation policy and students' lived experiences of the self-advocacy process to obtain accommodations, and between students' experiences of self-advocacy and their own proposals for a 'better way' to respond to disability on campus. Indeed, only two of our participants mentioned policy in their discussions of self-advocacy, suggesting that although policy produces the requirement to self-advocate, this may not be a directly tangible connection that students are making in their day-to-day negotiations.
Enacting student visions for change would prioritize learning from and working with disabled students rather than merely providing them services. This could involve exploring the possibilities of student-staff pedagogical partnership programs, as one example, where disabled students are full partners on projects (e.g., accessibility and disability inclusion training for faculty members and staff; development of services for disabled students) from design to implementation (Brown et al., 2020; de Bie, 2020; Marquis et al., 2016). Noted disconnects between the accommodation policy and student experiences of institutional expectations also highlight the importance of disabled student involvement in the creation and implementation of policies that impact them. These students have current, experiential knowledge of the self-advocacy and accommodation process and would contribute a valuable perspective that policymakers likely do not have. Their involvement could, and ideally will, lead to a reduced reliance on an individualized notion of self-advocacy and accommodation through greater attention to proactive accessible education for all.
There are several limitations to the data presented here. The findings were predominantly informed by undergraduate student participants with invisible or partially/occasionally visible disabilities who were registered for formal accommodations with the disability services office. Their experiences of the self-advocacy process may differ in significant ways from graduate students, primarily visibly disabled students, and those with more informal approaches to self-advocacy. Another limitation is that interviews were conducted at a single institution where most participating students were involved in an active disabled student community and may have known each other. Their perspectives may not reflect those of disabled students who have had fewer opportunities to share and collectivize their experiences with others or are negotiating self-advocacy in different institutional contexts (e.g., with variation in campus size, accommodation policies and procedures, the degree to which teaching is supported and valued within institutional culture, existence of a disabled student community). Additionally, due to the relatively small number of participants, this study was unable to more fully explore the nuances of participants' negotiations of self-advocacy as experienced through their diverse social locations and intersecting experiences of oppression. The small number of students expressing interest in the study may reflect discomfort coming forward to participate in a study about disability due to internalized stigma, not categorizing oneself as disabled, time constraints of being a disabled student, and/or our inability to offer compensation for their time and expertise. Unfortunately, further recruitment efforts were not possible due to funding and time constraints. Future research to explore how the 'right way'/'better way' framework resonates with a wider group of students, politicize self-advocacy, and redress ableism on campus might investigate these areas further.
This paper contributes to recent efforts to intervene in the conventional literature on disabled student self-advocacy in postsecondary education through critical and student-affirming perspectives (e.g., Bruce, 2020; Bruce & Aylward, 2021; Karpicz, 2020; Zuber & Webber, 2019). As Leah Jane Grantham (2013) elaborates from an autistic student perspective, self-advocacy involves "merging the personal with the political":
I advocate for myself, but with the awareness that my self-advocacy could help set precedent, legally or socially, for others to get their rights a little easier. …Collaboration with other self-advocates and helping them advance their own goals is profoundly tied into my notion of self-advocacy, because I know that I benefit from their victories as much as they do from mine. (p. 86)
Rather than accept service provider frameworks that have co-opted the language of self-advocacy from disability movements and characterized it as an individual activity (Karpicz, 2020), we might instead reconnect with long histories of disabled people's self-advocacy movements as a collective, politicized endeavor (Bertilsdotter Rosqvist, Brownlow, & O'Dell, 2015).
This project was funded through the MacPherson Institute Student Partners Program as well as a Faculty of Social Sciences Undergraduate Student Research Award (USRA), McMaster University. The authors would like to thank our participants for their time, honesty, and knowledge. We would also like to thank Jennie Vengris for co-supervising the USRA, Kate Brown and Danny Pryke for feedback that helped improve the paper, and Guila Benchimol and Talia Widrich for directional guidance.
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