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Disability and Self-Advocacy Experiences in University Learning Contexts

Authors:

Cynthia Bruce ,

Acadia University, CA
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M. Lynn Aylward

Acadia University, CA
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Abstract

Disabled students in Canadian universities are usually taught that they must develop the ability to discuss their disabilities and assert their rights if they want to achieve academic success. Yet this individualized skills-based approach can privilege deficit-focused methods and impose hierarchical and mutually anxiety-provoking student-faculty relationships. This study documents the experiences of disabled students and their professors arranging academic accommodations by exploring the relational necessities of student self-advocacy and how they shape experiences of teaching and learning at three Nova Scotia Universities. Findings expose the existence of formal self-advocacy teaching alongside informally communicated behavioural expectations. They also make evident the often unrecognized relational complexities inherent in claiming disability rights, navigating university process, and meeting expectations around student sharing of disability and accommodation information.
How to Cite: Bruce, C. and Aylward, M.L., 2021. Disability and Self-Advocacy Experiences in University Learning Contexts. Scandinavian Journal of Disability Research, 23(1), pp.14–26. DOI: http://doi.org/10.16993/sjdr.741
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  Published on 22 Jan 2021
 Accepted on 21 Dec 2020            Submitted on 29 May 2020

Introduction

Canadian universities have articulated a growing awareness of the accessibility barriers often experienced by disabled students in recent decades. Research and service provision, for example, highlight the need for appropriate academic accommodation (Fichten et al. 2010; Roberts 2012) and the availability of acceptable documentation to substantiate student accommodation requests (Harrison, Green and Flaro 2012; Harrison and Holmes 2012). However, efforts to increase the post-secondary participation of disabled students through the establishment of individual learning arrangements have resulted in slower-than-desired progress toward equity and have affirmed that participation for all remains a goal, not a reality (Guppy 2004; Opini 2008).

Within post-secondary institutions in Canada, disability is usually positioned as ‘an individual “problem to be fixed,” rather than an opportunity to reconceive what inclusion “means” in higher education’ (Cox 2017, 559). Bureaucratic borders define who qualifies for support within a medicalized frame that situates disability as deficit or lack (Oliver 2009), and accommodation procedures generally align with mainstream notions of access as an individual undertaking (Titchkosky 2011). Some people qualify while others do not – a reality that situates accommodated learning as optional and infuses its procedural elements with discretionary power.

Emergent thinking about the relational nature of post-secondary disability support offers Canadian scholars new avenues to probe the links between specific disability accommodation practices and the student/faculty relationships they produce. Yet studies in this area have not substantively considered disability as a lived reality produced within student/faculty relationships, and they have rarely investigated how these connections might influence instructional methods that anticipate student diversity. Inspired by the work of Tanya Titchkosky (2011), this study calls attention to the role of relational elements embedded within accommodation procedures by exploring how socio-political conventions and perceptions contribute to post-secondary constructions of participation and belonging. Access in this context is theorized as relational; as an interpretive scene that places disabled students into relation with their physical and social surroundings. Conceiving of access in this way supports a necessary unraveling of its culturally and socially mediated nature and an unmasking of its capacity to engage in the making of the meaning of disabled people (Titchkosky 2011, 8).

Titchkosky’s theorizing of access underpins a poststructural understanding of ableism to provide the theoretical ground for this study. Ableism is a preference for specific abilities articulated as the idealized yet unattainable species-typical or desirable and fully human individual (Campbell 2001; Wolbring 2008). Ability is good and disability is bad – purportedly separate phenomena that nonetheless depend integrally on each other for their very existence and preservation (Goodley 2014; Titchkosky 2007). Ableism, and more specifically neoliberal ableism, inextricably links educational belonging to the desired demonstration of normalcy and ability (Goodley 2016), or to one’s ability to emulate normal as a sign of disabled success (Bruce 2017; Campbell 2009). Ableism is connected to a ‘contemporary society that increasingly seeks to promote the species typical individual citizen: a citizen that is ready and able to work, productively contribute, an atomistic phenomenon bounded and cut off from others, capable, malleable and compliant’ (Goodley and Lawthom 2019, 235). This human ideal, then, is the unspoken normative benchmark that lurks in the background for disabled students as they work to organize individual learning support.

Organizing Individual Accommodations

Post-secondary disability accessibility in Canada is an institutional structure understood to encompass the regulations and specific allowable adjustments intended to facilitate the participation of disabled learners. As a continuation of special education approaches common to primary and secondary public schooling, post-secondary accommodations tend to focus on the provision of substantially separate compensatory programs that aim to alleviate the naturally occurring and biologically determined impact of what is considered impaired functioning (Danforth and Gabel 2006; Gallagher 2006). Within this framework, academic accommodations at university are frequently defined by students and faculty as alternative test and exam arrangements, tutoring and academic coaching, note-taking and scribing services, use of assistive technologies, and adapted assignment formats and due dates (Bruce 2017).

As post-secondary students work to make these individual academic arrangements, formal procedures require multiple interpersonal exchanges with faculty and disability services staff. Consequently, students are exposed to numerous viewpoints related to disability in academic settings. These standpoints, in turn, can shape their sense of themselves as either valued or marginalized members of their learning communities.

Importantly, research on the perspectives of university professors regarding accommodations for disabled students has revealed broad agreement with the ideal of teaching all university learners (Alghazo 2008; Jensen et al. 2004; Murray, Wren and Keys 2008; Smith 2010; Sniatecki, Perry and Snell 2015). In fact, in some contexts, university faculty have demonstrated more favourable attitudes toward disabled students than any other higher education campus partners including students without disabilities, administration, and disability services staff (Polo Sanchez, Fernandez-Jimenez and Fernandez-Cabezas 2018). However, disabled students regrettably encounter varying levels of faculty willingness to support accommodation requests (Coriale, Larson and Robertson 2012; Easterbrook et al. 2015; Mullins and Preyde 2013), and some disabled students from Ontario, Canada, have indicated this variability has not substantively improved with the implementation of accessibility legislation (Marquis et al. 2016).

This inconsistency emerges within a support regime that generally requires disabled students to develop the ability to discuss their disabilities and to assert their learning-specific needs and rights to achieve academic success (Holsberg, Test and Rusher 2019; Kimball et al. 2016; Shaw, Madaus and Dukes 2010; Walker and Test 2011). Yet, asserting their rights requires disabled students to expend substantial effort to participate in a process that can produce ongoing concerns about stigma and faculty resistance (Easterbrook et al. 2015) within highly individualized institutional practices that sit outside typical teaching and assessment procedures. Therefore, faculty/student power inequities are repeatedly reinforced when students request support (Erten 2011; Mullins and Preyde 2013; Warick 2004).

This individual skills-based approach can privilege deficit-focused methods and impose hierarchical and mutually anxiety-provoking student-faculty relationships (Claiborne et al. 2011). It simultaneously allows institutions to minimize their responsibility for diverse course pathways, while placing the burden of ensuring inclusive university learning on disabled students themselves (Dowse 2001). Accordingly, this study draws on a disability studies framework to centre the experiences of disabled students and their professors. The main question guiding the research was: What role does negotiation of individual accommodations play in shaping disabled student and university faculty constructions of their lived experience of disability at university?

Methodology

Centring Disability

In this article, we share knowledge generated within the first author’s doctoral research. She identifies as blind and works to centre disability as a vital form of lived experience that has important implications for generating and analyzing data (Kerschbaum and Price 2017). The lived experience of disability works to disrupt epistemological and methodological assumptions that sustain deficit understandings of and remedial responses to disabled people (Tremain 2005). Therefore, a critical qualitative method utilized active semi-structured interviews to position participants as legitimate sources of knowledge about their own experiences. It recognized their contributions, along with those of the first author as interviewer, in the co-construction of knowledge (Holstein and Gubrium 2011). The research explicitly aimed to foreground the under-represented voices of disabled students (Beauchamp-Pryor 2012; Hutcheon and Wolbring 2012; Vickerman and Blundell 2010), and to engage the perspectives of university faculty who have lived experience of disability, most often gained through teaching, that might offer valuable contextual insight into how relational elements of accommodation procedures shape disability experiences on university campuses (Titchkosky 2003, 7).

Interview questions focused on participants’ experiences of self-advocacy in the context of qualifying for and implementing individual accommodations. Disabled students and identified university faculty were specifically asked about their experiences with formal accommodation processes and about their perspectives on how those processes were connected with varying interactions with individuals and environments. Strategies used to facilitate learning and the extent to which they were experienced as helpful were probed, and participant responses and problem-solving strategies in difficult situations were explored.

Setting and participants

Interview data were generated at three small liberal arts universities in Nova Scotia, Canada. These particular settings were chosen because the institutions have comparable disability accommodation policies and procedures, similar student enrollment and faculty complement, are primarily undergraduate in their focus, and have similar program offerings at both undergraduate and graduate levels. A total of 30 disabled university students and 16 of their instructors were interviewed over a period of seven months across two semesters, and interviews ranged from 35 to 90 minutes in length. There were 10 student participants from each campus constituting a representative sample of disabled students based on available statistics for the number of students seeking disability services (K. Penny, email communication, April 12, 2016). There was a distribution of seven, four, and five faculty participants across the three university sites.

Ethics approval was received from all three university research ethics boards (Acadia REB 11-14, ST. FX REB 21111, MSVU REB 2013-105), and all 46 participants signed and returned informed consent forms. Each individual was assigned a number between 1 and 100 to protect their confidentiality, and the numbers were assigned based on the order in which they viewed the electronic invitation, not on the total number who finally agreed to participate. Interviews were conducted in a private accessible room in the Education Department at each participating university. All participants were asked in advance about any required disability accommodations, but wheelchair accessibility for one student and ASL interpreting for another were the only accommodations required.

Disabled student participants were those who had completed the required medical and/or psychological assessments and had provided their respective institutions with sufficient documentation to establish eligibility for disability services. Therefore, they had qualified by providing adequate documentation to demonstrate a ‘legitimate’ or ‘bona fide’ need for accommodations (Roberts 2012). Student participants were pursuing an assortment of degree programs and were at various stages of completion. All but one were undergraduate students; one was an undergraduate certificate student, and one was a Master’s student. Areas of study included business, child and youth study, classics, communications, community development, computer science, education, engineering, French, history, human kinetics, kinesiology, math, music, nursing, nutrition, political science, psychology, religious studies, and tourism and hospitality management. Students applied for learning supports under the labels of anxiety, attention deficit disorder, attention deficit/hyperactivity disorder, auditory processing issues, autism spectrum disorder, bipolar disorder, borderline personality disorder, circulation issues, deafness, depression, diabetes, dyslexia, hearing impairment, limited use of one arm, mental illness, migraines, mild learning disability, obsessive compulsive disorder, post-traumatic stress disorder, reading and writing disorders, seizures, sensory processing issues, spinal cord injury, and traumatic brain injury.

Within the context of the interview, each student participant was asked if they would be willing to provide the name of at least one faculty member who had, from their perspective and experience, effectively supported their learning. Emphasis was placed on identifying instructors who had engaged with the student in the process of implementing individual accommodations. Each identified supportive instructor was then contacted by the researcher using their university email address and invited to participate. Those who responded in the affirmative were sent a consent form, and an interview was scheduled for a time and at a place of their choosing on their respective campuses. This recruitment process was explicitly intended to support the amplification and contextualization of disabled students’ under-represented voices. It also constituted a reflexive strategy employed by the first author, who is both a disabled student and instructor, that aimed to make space for faculty contributions that might work against the positioning of faculty as capable of only marginalization and discrimination (Pillow 2003).

Faculty participants were from a variety of academic disciplines and held a range of work experience. All were full-time employees but one. Academic disciplines included biology, business, classics, earth and environmental science, education, environmental and sustainability studies, history, kinesiology, marketing, math, physics, psychology, religious studies, and women’s studies.

Analysis Process

Analysis of the semi-structured interviews meant confronting and resolving many arguably ableist standards for determining analytic rigor. Qualitative data analysis software programs are largely inaccessible to screen reader users, and the accepted procedure of creating interview transcripts for analysis as textual data (Markle, West and Rich 2011) is a highly visual task. Blind methodologies (Bruce 2020) were therefore developed as a way of centring disability (Kerschbaum and Price 2017; Price and Kerschbaum 2016) within a fully accessible and rigorous process.

Working extensively with the interview recordings using the bookmarking feature of Kurzweil 1000, a fully imbedded partial transcript was created within each recorded interview. This mode of transcription supported the maintenance of an already established auditory connection to each participant while simultaneously addressing the pragmatic need for text that could be accessed for purposes of coding and writing (Bird 2005). Individual interview profiles were subsequently written as a way of crystallizing thinking and elucidating different patterns, perspectives, and details (Richardson and St. Pierre 2005). A set of broad initial codes was then developed to organize the data into common themes and salient discussion points (Saldana 2009). A return to the interview recordings alongside a review of the interview profiles and initial codes led to the development of three relational categories; relations of compliance, relations of resistance, and potentially transgressive relations. These categories exposed the lived and witnessed ramifications of self-advocacy expressed as the complications of rights, the nuances of self, and the particulars of process. Self-advocacy learned through formal curriculum and informal or implicit enforcement was similarly elucidated through these three relational categories and consequently positioned as the unquestioned cornerstone of post-secondary disability access.

Self-Advocacy – The Cornerstone of Access

The necessities and complexities of student self-advocacy

Analysis of the interviews demonstrates the unquestioned centrality of self-advocacy in post-secondary disability support structures and highlights its propagation through formal and informal teaching aimed at shaping student understanding and action. Participant experiences expose the effort required to claim accommodation rights alongside the power imbalances that shape experiences of students as they work to understand and comply with the procedural elements of the system. Finally, both students and faculty bring required self-knowledge into focus and make evident that it is a complicated, nuanced, and potentially unrealistic systemic requirement that often generates concerns related to stigma and identity.

Formal curriculum

Participant experiences reveal how self-advocacy as an individual student responsibility has garnered significant and unquestioned standing in systems of disability service provision (Aspis 1997; Aspis 2002). Several students described self-advocacy as standing up for yourself and your learning needs while others offered more combative explanations related to experiences of having to fight, often with faculty, for requested adjustments. As this student stated,

I think everyone has to be a self-advocate. You need to be able to speak up for yourself in any situation really. If you can’t, then you’re going to be really, you’re gonna have a lot of problems in life, because, people will push you around if you can’t self-advocate … It’s a skill, it’s not something you’re born with, you have to learn how to do that (S 7).

This statement clearly links self-advocacy to the necessities of confronting oppositional others. It expands the commonly defined self-advocacy skillset to one that encompasses conflict resolution abilities (Holsberg et al. 2019) that can be difficult to invoke in power-imbalanced situations.

Several students said they had benefitted from direct self-advocacy instruction in the form of coaching by primary or secondary school teachers and educational or health care professionals. Others reported exposure to a prescribed self-advocacy curriculum in specific classroom or school settings. Prior experience with disability services enabled successful navigation of disability services for some, but explicit teaching in specialized high school settings was particularly relevant as this student’s comments clearly illustrate.

In high school I went to a private school, so they were really about advocating for yourself and any accommodations you need. I took a credited course on how to, I guess, make whatever disadvantages you have an advantage. So that really helped right away (S 34).

Such explicit teaching clearly facilitated this student’s transition. However, an instilled sense of responsibility for overcoming one’s disability is also exposed. Underscored, then, is the problematic presence of ableist ideologies that compel acceptance or performance of normality as the desirable benchmark of humanity (Overboe 2009).

Several participants indicated that the formal self-advocacy curriculum had taught them how important it was to understand their disabilities, and it similarly prioritized the associated obligation of drawing on that knowledge to shape appropriate learning contexts. Faculty spoke directly to this latter point. They connected students’ difficulty with self-advocacy with the fact that students do not arrive at university with these strengths. As this professor explained,

They’re good self-advocates in the sense that when you talk to them they’re not at all shy, they’re not so good when it comes to actually getting their shit together, is the best way to put it … they’re good at advocating they need help, maximizing their benefit from that help they ain’t so good at (F 62).

This statement affirms student discussions of the formal self-advocacy agenda, and these shared perspectives compel consideration of suggested additions to the already articulated requisite skillset. Students must know, and be able to communicate, their disability-specific learning needs and associated beneficial accommodations. They must also learn quickly how to draw effectively on those accommodations so they can be known as good disabled students; the ones who have earned, through demonstrated ability and normalcy, the right to remain at university (Goodley 2016, 177).

Expected disabled student behaviours

Enacted within the relations that self-advocacy engenders, the informal curriculum implicitly and explicitly works to shape the qualities and behaviours institutions have constituted as essential to disabled student success. Politeness, independence, time management, organization, and compliance surfaced as unspoken expectations often discovered by participants through interpersonal exchanges. Students quickly learned that accommodations should not be burdensome for faculty, and therefore tried to ensure self-advocacy was not perceived as an imposition. Some students were aware that approaching professors too often with disability-related reminders can be perceived as ‘annoying’ (S 27). Others learned to ‘put a cherry on top’ of their requests (S 45), and one student felt obliged to perfect the art of compromise.

You need to be able to give and take, it can’t just be you taking. Like, you’re going to have to give something back, everyone wants something … a professor’s going to need some control, control over who’s proctoring or over how long you get to write, and as long as you can give them something and still get what you need, then you’ve accomplished what you need to accomplish (S 7).

This graduating participant understood the importance of concession, and her words bring focus to the negotiation of control. Compromise is a nuanced ability to acquire, and it appears to emanate from long experience with unpredictable levels of faculty support that arguably highlight the neoliberal-ableist obligation to be malleable and compliant (Goodley and Lawthom 2019).

Students also learned of expected norms related to a certain kind of solitary independence. It was articulated in student and faculty descriptions of self-advocacy as taking things on yourself, standing up for yourself, taking responsibility for your education, and trying your best to get what you need. Independence was also described as the capacity to act strategically. One student said he tactically deployed confidence to demonstrate compliance with disability services obligations. Documented as a necessary but often absent student attribute in other studies (Kioko and Makoelle 2014), confidence was raised by some students and faculty in this study as an essential skill for negotiating with unpredictable faculty personalities.

Even though they’re encouraged to get out there and, you know, get what they want, advocate and demand or whatever in some cases, I don’t think they have the confidence level. I don’t think many of them know how to ask or how to approach the situation. Some don’t know what their options are and so it’s hard to be a self-advocate. And there is always power … and many of them are just not aware of the ramifications sometimes, and ah, how fragile some faculty are or how they don’t want to be challenged … so it’s a very fine line there for the student to be able to read the personalities and walk that line (F 63).

This strong statement from a professor who recognized the intense difficulty sometimes associated with self-advocacy expectations illustrates the socially mediated contexts that acts of self-advocacy often produce. It exemplifies the inadequacy of individual skill and desired independence when resistance is expressed in a power-imbalanced relational space. It similarly foregrounds ableist expectations of disability containment as a possible desirable mechanism for emulating normalcy (Campbell 2009; Goodley 2016).

Students also learned that compliance was promoted and valued, often after completing the initial stages of organizing modifications. There were established procedures in place whose purpose seemed to shift as time and experience amassed. Student participants with minimal exposure to academic adaptations appreciated student-initiated procedures that led to helpful identification of learning support and establishment of an initial plan. However, both participant groups indicated that the value in being compliant often changed over time. Eventually, compliance became an indicator of necessary self-advocacy skill development that either had or had not progressed, and this student’s stated frustration points to the associated consequences of failure to fulfil mandated self-advocacy tasks.

My professor was, cancelled a class and I didn’t get the form signed within my five business days. So, I handed it in after the next time I had class. Nobody said to me, anything to me when I handed it in, but on my 19th birthday my phone rang, and it was disability services and she told me that I did not follow the protocol and I would not be writing with a proctor (S 45).

So, missing a step or deadline has significant consequences, and it was framed as evidence of the need to continue self-advocacy skill enhancement.

There exists an unspoken expectation that students will demonstrate organizational abilities such as time management, prioritization, and clear communication when often these are areas documented as direct challenges, a reality that was frustrating for some students. There is no small irony, as both participant groups pointed out, in a system that recognizes and agrees to accommodate certain disabilities and simultaneously seems to require their disappearance. Some students appreciated academic coaching to cultivate skills critical to post-university employment success but expressed disappointment in a learning environment that values the development of certain abilities and concurrently punishes their absence.

The implied curriculum exposes a disconcerting self-advocacy agenda far removed from educational activism aimed at legitimating disabled identities and ways of learning (Connor et al. 2008). It emerges as an expected set of activities to be completed within institutionally defined boundaries (Aspis 1997). Students must request accommodations yet are expected to limit their queries to the adjustments on offer. Some participants found those offerings beneficial, but others found them unhelpful and unimaginative. One student definition of self-advocacy as a false institutional construct notably exposed its power-laden lived realities.

I think it’s [self-advocacy], I want to think it’s illusionary the more we discuss it because the more I think about it, it’s a social construction, it is social control in a sense or it wants you to think you have some power to exert, and you know it’s absolutely bullshit because there’s always something over top of it … again, the minority is being dominated by the homogeneous (S 37).

This student questioned the legitimacy of required self-advocacy activities that claim to empower yet realistically constrain student options. Faculty participants also recognized these inequities and power relations that are always at play. They acknowledged that some instructors resist challenges to their accommodation decisions and want disabled learners to unquestioningly accept their responses to accommodation requests. Yet disabled students are expected to engage in the most difficult of tasks – advocating with resistant faculty. One professor juxtaposed the necessities with the perceived dangers by saying, ‘I think students should be self-advocates for sure, but sometimes I think they have to play a delicate game because some professors … there’s some egos there’ (F 96). So students have to comply with assigned self-advocacy tasks, but there is clearly some interpersonal risk introduced when they come into contact with discrete academic personas. As the following sections demonstrate, interpersonal risk is evidenced in participant explanations of the convoluted terrain encountered in the work of claiming rights, following necessary process, and demonstrating required yet potentially unreasonable levels of self-knowledge.

The complications of rights

For many disabled students, post-secondary disability rights appear theoretically protected yet realistically elusive. Some participants, for example, spoke of the need to expend valuable energy holding others accountable for their rights recognition and protection. Others were explicitly discouraged by institutional tendencies to minimize disability rights, and some specifically said that claiming accommodations was mostly about students having to demonstrate deservedness.

I think in terms of disability services it, it kind of stinks that we have that sort of mentality, that there’s a deadline to be reached, and if you don’t follow that criteria then you’re out. It shouldn’t have to be that you need to fight and you know, prove to anyone that you’re worthy of their services, or you know, funding (S 45).

This burden of proof underscores previous findings that expose the degrading nature of having to ask for something that should be a right (Mullins and Preyde 2013) and it clarifies the pressure to conform to what some students described as limited perceptions of intelligence linked to constructions of the ‘normal’ or ‘desirable’ student (Perry and Franklin 2006). One participant specifically named the lived consequences of such expectations when she said,

I think for me, I’ve been, for too long, trying to be that person, trying so hard to be what I think it is that other people think is smart and not focusing on the qualities that I do have and figuring out a way to make them work for me (S 87).

This statement exemplifies a powerful internal identity struggle provoked by perceived preferences for a certain intellectual profile (Wolbring 2008) that situate disability as a secret to be concealed – a preference that is often borne out in student/faculty accommodation interactions.

Consistent with previous research findings, most participating professors explicitly supported accommodation rights (Alghazo 2008; Jensen et al. 2004; Murray et al. 2008; Smith 2010; Sniatecki et al. 2015). Faculty recognition of disability rights was evidenced in their stated support for routine procedures such as inclusion of accessible learning statements in their syllabi, in their personal references to their own university learning struggles, and in their commitment to fostering diversity in the classroom. Two participants discussed their commitment to the rights of disabled students, and the statement of one instructor specifically situates equitable teaching as an important institutional ideal and key personal belief.

You know I have a mission statement for my life … I feel we must build an equitable society, and it takes work … I teach this stuff, and so I have to live by it, I need to live by it … so I really want to help because we need to make post-secondary institutions and a lot of other places more accessible, and we need a more diverse environment here and at other universities (F 83).

This instructor’s robust commitment to equity is vital evidence of individual faculty practices that some students cited as profoundly helpful. It is demonstrative of the inclusive possibilities generated by professors who create instructional spaces that consistently make a place for and value diversity of thought and being. However, this depth of commitment to inclusive teaching is not always visible on university campuses and her words call attention to the need for systemic improvements to embolden disabled students whose inconsistent encounters with faculty have endangered their sense of themselves as capable learners and claimants of rights.

The particulars of process

Participants spoke much more consistently about what it means to have knowledge of process than knowledge of rights. Procedural familiarity was directly linked to understanding when and with whom to speak about disability-related needs, knowing what forms to have completed and being aware of mandated submission dates, and comprehending the order in which all tasks are to be accomplished. The success of the system therefore appears to be linked to the process itself, and the following faculty statement communicates the general understanding of this reality.

I think it is just very regimented in that this is the process, you go to student services, you register, and your tests are proctored, if that’s what needs to happen … it’s just, it’s very rule oriented (F 67).

Some participants navigated inflexible institutional requirements with ease because they said they had simple or minimal requests and could easily provide current proof of disability. Yet students who came from non-dominant cultural backgrounds, identified as mature, or whose socioeconomic status was marginal often expressed significant additional frustration with the process. They also endured forceful interpersonal exchanges like the following:

A prof said to me, yeah you are at the university and you have special things done to you, but when you get out into the work life, how are you going to deal with it, that really scared me … when the prof said it we were arguing and he hit the desk and screamed (S 10).

This intimidation was experienced by a few participants as a mystifying relational outcome that diminished their efforts to understand procedure and left them at a loss for any useful or meaningful response. In a similarly confounding way, procedural knowledge expectations sometimes seemed to be amplified by the apparent necessity to be connected to the right personal and professional networks and to have adequate familial financial resources. One student who had grown up and was living in poverty was astounded by his first-year experiences.

Disability access, my first year I had the worst year there, I was going through culture shock and so you know it was a big transition, and adjusting to a learning disability and the fact that you’re at university … you would get rude comments … it just got worse and worse and worse, I just couldn’t deal with it … one of them said to me, I come from a really, really, really low-income family … and I was having some strife at home, and she said, so you’re trailer trash, what are you going to do about it? (S 37).

He reflected on this experience just ahead of his imminent graduation. He was still completely perplexed that someone who was supposed to be helping was responding to his terribly difficult life circumstances in such a dismissive manner. It was a stressful introduction to accommodations in general, and it bred a desire to circumvent the formal network of support whenever possible.

Some students highlighted the importance of knowing who to talk to and when to talk to them when arranging for academic support. Many spoke of the required steps and emphasized their awareness of a dominant hierarchy of interactions and tasks. This student’s comments succinctly outline this hierarchical expectation.

In university you need to know the right person to talk to, you can’t just go up to anyone. And you need to know the right steps to take. If you take the wrong steps, or in the wrong order, it’s almost like you’re, you get in trouble, like, that’s not right, you weren’t supposed to do that (S 20).

Even when students were working hard to comply, there were identified risks elucidated by inadvertently approaching the wrong person at the wrong time.

There were a few faculty members who described the procedural tasks associated with accommodation structures as constraining, and they said their personal role was often restricted to reading recommendations and signing forms. ‘With student services, people go down, they do writing, they have tutors, you know they use the laptops for doing their quizzes and things like that, so, it’s sort of territorial in a way’ (F 63).

This participant was speaking specifically to the divisions often drawn between disability services specialists and faculty, a separation reminiscent of special education service provision in public schooling contexts that affirms the expertise traditionally conferred upon those who have been trained in adapting or modifying for special educational needs (Tomlinson 2012).

Procedural minefields were ever-present for students, but conforming to the rigid accountability protocols set out by disability services generally facilitated a level of success in obtaining accommodations. Following the rules meant usually getting what you need, but there appears to be a third systemic prerequisite – one that is related to essential and nuanced student self-understanding.

The nuances of self

Students defined self-knowledge as understanding their specific academic strengths and struggles, and as knowing what accommodations might best facilitate their learning. They consistently said they wanted to contribute to accommodation-related discussions, and several students specifically wanted their self-knowledge utilized by faculty and disability services staff.

I like to meet with them [faculty] one-on-one first and say, you’re going to get a message from disability telling you that I have this and this, and these are the accommodations that I have had provided for me. If there’s anything that you think might be beneficial with your course requirements I’m completely open to that, and you know if there’s something that we need to work out together then we can work through that, as long as it’s within what I need, which is just a situation where I’m going to be less stressed, less anxious … (S 7).

Establishing these workable relationships with faculty and staff clearly emerges as the best way to have their perspectives understood and valued. It similarly surfaces as critical to having their voices heard and as facilitating discussions with faculty that can generate new ideas in difficult situations.

Faculty agreed that listening to students is vital, and many indicated that dialogue about academic support expectations and previously successful learning strategies is helpful. Several instructors said they prefer conversations with students over the use of standardized forms but acknowledged that signing forms can provide an important pathway to helpful dialogue.

If I’m having the dialogue with the student, I’m connecting with the student, I’m realizing more about them because, you know, they will fill me in about how many courses they’re doing, if something is a particular issue for them … I pick up on more … they identify other things they’ve done in the past; I find out some of their coping strategies … I get a sense of the person (F 63).

This professor’s perspective positions disabled students as capable of contributing meaningfully to their own learning support by generating dialogue that can collaboratively produce effective accommodation strategies. Yet decisions about how much disability and accommodation information to share in these conversations are clearly mediated by real and perceived power imbalances or by concerns about stigma and negative judgment (Goode 2007; Vickerman and Blundell 2010). Concerns about stigma and judgment can lead to the rejection of needed support, a choice that this student acknowledged can jeopardize academic success.

With the learning disability, I haven’t really even brought that into the equation, I think only one of my professors even knows. I wanted to get through university without having to use that in any way if that makes any sense, which worked in some cases and in some cases it didn’t … and I think, I don’t know if it’s like an ego thing, but I think I just wanted to fit in without standing out (S 31).

Instructor comments offer an acknowledgement of the difficulty inherent in requiring disabled students to have and share so much personal information. They situate self-advocacy as essential, but recognize that expecting students to know and be able to articulate their learning needs might be unreasonable. As this faculty member stated,

Knowing what you need and asking for it, telling other people … but first you have to know what it is you need, and how difficult is that, you know? I’ve gone through a lot of my life sort of not recognizing or admitting that I need such and such (F 82).

This recognition that university processes expect a level of self-knowledge that experienced faculty may not even have achieved is critical because it exposes the impractical nature of institutional expectations.

Some student commentary similarly exposes how they struggled with the obligation to connect with a disability identity, one that often arose from required sharing of disability-related information. They understood the necessity for officially sanctioned labeling in order to be granted accommodations, but grappled with the marginalizing implications of doing so publicly. Faculty spoke of interactions with ‘struggling’ students who are often reluctant to seek out support related to professional assessment or diagnosis. One faculty member shared a circumstance where a student was so reluctant to identify that she actually dropped a course.

She said, I’m really sorry I have to drop your class, it sounds so, so interesting. I really wish I could take it, but I just can’t do the readings, I have a really hard time reading. I said, have you been to disability access, do you know? And she said, No I haven’t, I guess it’s silly but I just don’t want the stigma (F 68).

This was a course the student found interesting, but the required reading was extensive and difficult. In spite of her deep interest in the course content, she was committed to maintaining her non-disabled status and to living with the course limitations imposed by that choice.

Some students felt their level of comfort around accepting assistance was increasing, but honest discussion with peers remained complex. Participants recognized accommodations were helpful and constituted a legitimate form of learning support, but were not ready for others to know about their specific disabilities. They utilized accommodations and appreciated their value, but actively worked to appear normal to peers. This highlights the perception, and possibly the reality, that there is little room on campus for open dialogue about self and other – a space where disability is to remain hidden and unspoken except within the bounded environment of service provision and the confidential execution of accommodation implementation.

Conclusions

This study aimed to expand current understandings of post-secondary disability self-advocacy through an exploration of student and faculty experience. Open-ended interview questions generated rich stories (Aylward 2006) about disabled students’ and university faculty members’ self-advocacy, accommodation, and negotiation experiences. Sharing these accounts offered an opportunity to dwell in the messiness of the everyday interpersonal exchanges created by obligatory acts of student self-advocacy. Importantly, the intent was not to make meaning of each individual story and validate that meaning through traditional procedures, such as member checking. The aim was to draw on the lived experience of disability in all its complexities to deepen understandings of the nature of post-secondary disability support structures and to evoke possibilities to disrupt and resist the constraints they so often impose (Corker 1999; Corker and Shakespeare 2002). In other words, the first author worked, as an insider researcher, to think with theory through a poststructural analysis to deeply contextualize self-advocacy and bring focus to how it is being deployed in post-secondary environments (St. Pierre and Jackson, 2014).

Participant stories reveal that institutions tend to require and cultivate student self-advocacy skills in order to perpetuate neoliberal-ableist ideals of independence, compliance, and self-containment. Those ideals, in turn, are situated as vital markers of the desirable university student. The consequences self-advocacy can activate related to student/faculty relations are clarified, and participants named them as acceptance, rejection, support, resistance, skepticism, and denial. These are often unpredictable relational outcomes that instill in disabled students a variable sense of post-secondary belonging. Perhaps more significantly though, their experiences expose the pervasive disableism disabled students are compelled to endure as a direct result of repeatedly carrying out compulsory acts of self-advocacy in accommodation implementation processes.

Student conversations established a clear link between self-advocacy, knowledge of accommodation rights, and the ability to pursue the protection of those rights. Their experiences support arguments in favour of a disability rights approach within educational institutions. They problematize current individualized compliance-based systems that situate knowledge of rights as a solution to inequity that can only ameliorate the situation one person at a time alongside the concomitant failure to mobilize a larger societal response to the challenges of post-secondary inequity and exclusion (Cory, White and Stuckey 2010; Gabel 2010; Peters, Johnstone and Ferguson 2005).

Ongoing procedural obligations produced significant uncertainty that weighed heavily on already over-burdened disabled individuals. Students worked to share knowledge of learning and accommodation specifics, but often felt objectified by procedures that reduced the articulation of self-knowledge to an unrealistic and stigma-producing bureaucratic exercise. Yet perhaps most critical are the conclusions that can be derived from the perpetually required completion of the power-laden tasks associated with self-advocacy. This ongoing necessity was enlisting student complicity with an ableist project that aimed to legitimate its unquestioned status. Institutionally defined and mobilized self-advocacy constructs had objectified many students by making them into compulsory rule followers. Students were positioned as instruments of a disciplinary regime, one that has produced a ritual of truth about the essential role and nature of self-advocacy in structures of post-secondary disability support (Foucault 1977).

There exists an accepted classification within post-secondary education that situates self-advocacy as a set of essential skills and abilities whose mastery promotes, and even ensures, university accessibility. However, the experiences of disabled students and their professors have exposed a much more complex learning landscape wherein the capacity to claim accommodation rights becomes contingent on one’s ability to seek out and mobilize, in institutionally sanctioned ways, critical information related to the responsibilities of self and the obligations of others. Self-advocacy is being hived off in many Canadian universities from efforts to diversify scholarly communities and instead being taken up as a strategic yet unrecognized ableist project that is intended to reduce the impact of disability within the teaching and learning environment. Defining self-advocacy as an individualized skill set fits well within the neoliberal-ableist expectations of autonomy, independence, and accountability – narrowly delineated competencies that are required if students are to remain in school and achieve institutionally defined success.

The proliferation of self-advocacy as a set of individual skills to be deployed in strategic and non-disruptive ways arguably threatens the viability of self-advocacy becoming a political movement – one that will affirm the rights of disabled people to build lives that include the normative ideals of education and employment, and to do so within a frame that values interdependence, reciprocity, and relationship (Goodley 2014; Goodley 2016). Currently, disability self-advocacy in university contexts contributes significantly to sustaining a bounded disability space that is defined as belonging only to individual disabled students and the service-provision domain. However, the experiences of the participants in this study make visible the possibility of a different self-advocacy reality; one that can be created by the important connections that students are able to establish with professors who understand disability as valued diversity in educational settings. The activist potential of a reconceived and reclaimed self-advocacy in higher education needs attention, and disabled researchers have much to offer to these vital activist analyses.

We agree with Dolmage (2017, 94), who articulates the necessity of understanding the battle against ableism in academic settings as one that will be difficult, ongoing, messy, bottom-up, and unpredictable. He also usefully reminds us that current retrofit attempts focused on accommodation are limited, bordered, constrained, top-down, and rubber-stamped. So, in the face of this messy and seemingly unrelenting battle, how can activists most effectively respond?

We can begin with disability understood as a complex array of experiences lived by a community of scholars and activists who are committed to understanding and contesting ableism (Goodley and Lawthom 2019). There is ultimately a need to transgress historical boundaries that have been established and sustained between academic and service-provision sectors (Oslund 2014). This study suggests that uniquely powerful collective action may emerge from the purposeful activist coalescence of disabled faculty and student agendas – a move that can mobilize the largely untapped potential such a coalition offers to the imperative of dismantling unquestioned beliefs that student self-advocacy, defined as specific skills to be developed through formal and informal instruction, is the most empowering route to disability as valued diversity. Universities must attend to disability as a category of diversity worthy of critical exploration and to disabled scholars and students as vastly under-valued contributors to the breadth of knowledge traditions that academia purportedly works to embrace.

Funding Information

This project was funded by a Social Sciences and Humanities Research Council of Canada Doctoral Award and by a doctoral fellowship from the Canadian Federation of University Women.

Competing Interests

The authors have no competing interests to declare.

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