4 Research question and methodology
This study employs two distinct yet complementary approaches. First, it adopts an action research approach (Brydon-Miller & Maguire, 2009), with research questions and sampling strategies oriented toward actionable knowledge given the recognition of the need for change driving the project. Second, it utilizes an environmental scanning approach to search and identify best practices and emerging trends in accessibility. Environmental scanning is used in higher education to identify changes in the external environment and inform institutional changes (and is thus action-oriented) (Lapin, 2004). In our study, environmental scanning activities were driven by a political agenda: advancing equitable change within our university (Johnson et al., forthcoming).
Two questions guided this research:
- What practices, ideas, knowledges could be useful for change-making to address oppressive accommodation systems?
- What pathways to access-centered education exist that provide an alternative relationship (e.g., anti-oppressive, anti-racist, anti-ablest) to accommodation and disclosure of disability status than the traditional processes found in HEIs?
The research used a qualitative, cross-sectional design, involving three methods: 1) web search; 2) key informant interviews; and 3) literature review. Note that the web search and literature review methods are discussed more in-depth elsewhere (see Johnson et al., forthcoming; Fernandes et al., forthcoming).
Web search
The web search activities were led by three graduate student members of the research team and concentrated between July and December 2022. The purpose of the web search was to identify alternatives to the individualizing and medicalizing status quo of academic accommodations that we could learn from.
Our search strategy was iterative and guided by a disability justice framework and our lived experience as disabled, sick, and mad graduate students/researchers (Johnson et al., forthcoming). We started with a targeted search of institutional websites (primarily focused on SAS webpages where accommodation processes are typically outlined for students) and then broadened our search to include other grey literature sources. We primarily used google and key search terms included: (non)disclosure, (non)documentation, higher education, postsecondary education, access-centered, disability justice, and more. We used many combinations of keywords and added new search terms as they emerged in our findings.
A total of 33 digital sources were included and thematically analyzed. We also utilized this initial web search to support the recruitment of key informants for interviews, recording contact information when available (Johnson et al., forthcoming).
Interviews
Interviews took place between January and June 2023. The purpose of the interviews was to learn more about the alternatives to academic accommodations being implemented, including any barriers or gaps as well as unmet aspirations.
We started recruitment with individuals and organizations identified during our web search as well as those known to the research team. In this report, we call participants ‘access leaders’. An invitation was also extended across departments at York University to identify student leaders involved in accessibility-related activism and later extended to two other similar-sized universities in the GTA. Lastly, snowball sampling was used to identify more access leaders.
We interviewed 37 access leaders, including students (n = 23), instructors/faculty (n = 12, two of whom were graduate students), and access professionals/advisors (n= 2, one of whom was a recent PhD graduate and also told us about their student experience). Interviews were semi-structured and between 45 and 90 minutes in length. Many participants chose to be identified in the research results and those that did were given an opportunity to review selected quotes. While we did not ask participants why, we recognize that many have been fighting for years to improve access to and in universities (Johnson et al., forthcoming). This practice troubles ideas of expertise and ownership in research – and we thank all participants, those who opted to use real names and those who did not, for sharing their expertise and time with us. Participants who did not opt to be identified were given the opportunity to choose a pseudonym, marked throughout with an asterisk. Participants who did not choose to use their real name or select a pseudonym are identified by their institutional position (Student A, Instructor B, and so on).
Analysis of interviews involved iterative team-based coding of full transcripts. This process took several months and used Dedoose qualitative data analysis software to help the team see emergent themes and patterns. Once the code book was established each transcript was coded by at least two researchers to ensure all relevant information was captured. Themes were developed collaboratively in weekly team meetings. [1].
Interviewee Demographics
Twenty-eight of the 37 interviewees responded to an anonymous self-identification survey. All except one of the participants who completed the survey identified as disabled, person with a disability/living with an illness (including but not limited to mental, physical, long-term, temporary, or episodic), or D/deaf or hard of hearing. Almost half (n=12) of the respondents identified as having invisible disabilities, and just over one-third of respondents (n=10) identified as neurodiverse. Most survey respondents identified as a woman (n=19) while the remaining responses included man (n=5), non-binary (n=2), genderqueer (n=1), other (n=1), or preferred not to answer (n=1).[2] The majority identified themselves as white (n = 17), while 9 people identified as racialized or person of colour, including two who identified as white-passing. Of the remaining two people, one chose other, and one did not respond. Most participants had completed a higher education degree: nine survey respondents had completed a doctoral degree, 14 completed a master’s degree, and the remaining completed a bachelor’s degree or some post-secondary education.
Literature Review
The literature review was in response to gaps and limitations in the earlier research activities. The purpose of the literature review was to situate critical questions about access in North American higher education settings (Fernandes et al., forthcoming). Mainstream higher education institutions in North America are historically white institutions (HWIs) because they are foundationally white supremacist structures embedded in settler colonial and transatlantic slave economies (cite). It is imperative to engage a critical understanding of this institutional landscape which shapes experiences of racism, ableism, and access or lack thereof. The specific research questions guiding our review were:
- What has the literature on HWIs said in 2023 about the experiences of racialized members?
- What can we learn from this literature that can inform a more intersectional understanding of issues of racism, ableism, and access in HWIs?