Abstract
This article continues the discussion of the experiences of disabled and neurodiverse Ph.D. students in Library and Information Science programs in American and Canadian universities, following up on the previous report that addressed their struggles during and in the immediate aftermath of the COVID-19 pandemic. This article directs attention to their experiences in Ph.D. programs irrespective of the pandemic and focuses on both existing barriers and support mechanisms. Based on the results of a qualitative, online, self-administered survey, guided by hermeneutic phenomenology, the study identifies barriers rooted in attitudes and perceptions; policies and procedures; information and communication; physical spaces; virtual spaces and technology; and access to support services and networks. At the same time, an only mitigating factor and an only sustainable and consistently mentioned support mechanism was the good will, compassion, and supportive actions of individual faculty members. The article places the analysis and interpretation of empirical data in the context of academic ableism, conceptualizing the situation of Ph.D. students as a lingering state that was not improved even through the lessons and experiences of the pandemic.
Introduction
In the growing body of research about disability and neurodiversity in academia, the population of Ph.D. students remains the least explored. This article is the second report on the study that looked into the experiences of disabled and neurodiverse1
In this article, we use “disabled people” and “people with disabilities” interchangeably. We acknowledge that there is no consensus on what terms are preferable and give legitimacy to both person-first and identity-first language. We also prefer using “neurodiverse” rather than “neurodivergent,” even if the latter is more grammatically correct; we avoid using “neurodivergent” which, for some, bears the connotation of “diverging from the norm.” We recognize, however, that arguments in favor and against each chosen term can be made. We respect the position of those who differ from us in their preferred terminology and hope that our readers will extend the same courtesy to us and respect our choices.
The study was guided by hermeneutic phenomenology and used the qualitative survey as a method of data collection; the centerpiece of the survey was the SQUIN technique (Single Question aimed at Inducing Narrative). Philosophically, it was guided by the principles of diversity by design (Dali & Caidi, 2017), a concept that views diversity in all its manifestations, including disability and neurodiversity, as integral to our work and learning spaces, as well as the societal fabric. Proceeding from philosophical assumptions to the details of the survey design, all of which together were aimed not only at collecting data but also at empowering participants in the process of research, we developed the Holistic Empowering Methodological Approach (HEMA), which is described in detail in a separate published manuscript (Dali & Charbonneau, 2024b).
The study examined the following Research Questions (RQs):
RQ1: What are the demographic characteristics and academic specializations of disabled and neurodiverse Ph.D. students in LIS departments in the U.S. and Canada? RQ2: What are their experiences as Ph.D. students during the COVID-19 pandemic? RQ3: How do they see their academic and professional future in the post-COVID environment? RQ4: What are the experiences of disabled and neurodiverse Ph.D. students in LIS programs beyond the pandemic?
While Part I addressed RQ1 and RQ2, Part II focuses on RQ3 and RQ4. We encourage the readers to refer to Part I (Dali & Charbonneau, 2024a) for the previously presented findings and to the HEMA manuscript (Dali & Charbonneau, 2024b) detailing the study methodology. Guided by the HEMA, we explore and narrate the experiences of disabled and neurodiverse LIS Ph.D. students beyond the pandemic and thoughts on the future of their academic and professional careers. We hope that this study makes a useful contribution to understanding disability and neurodiversity representation in academia. We also believe the study findings can be used to better support doctoral students, develop more equitable academic environments, and build a more diverse academic workforce on account of disability and neurodiversity.
Ableism, discrimination, and the ugly phenomenon of disability erasure abound in academia. By ableism, we refer to the belief that disabled people are “inferior” to non-disabled people
and that, as a consequence, they should be accorded lower social status. Although overt abuse directed towards disabled people on the basis of physical [characteristics] has become increasingly socially unacceptable, wider assumptions based on [ableism2
Harris & White (2014) use the term “able-bodiedism,” which we replaced with “ableism.”
Ableist beliefs give rise to ableist attitudes and actions. By disability erasure we refer to the bleaching out of the word “disability,” along with disability identity, from the public discourse and even diversity, equity, and inclusion conversations (e.g., Andrews et al., 2019). Ableism and disability erasure create a significant attitudinal barrier, which makes other systemic barriers more insurmountable. Implicit bias and latent (but very real) discrimination and exclusion, to which Harris and White (2014) alluded, can manifest in different ways. It can masquerade as “legitimate” concerns about “fairness,” “workloads,” and “equality.”
A particular type of ableism – academic ableism – has a set of unique features, and in order to fully understand the experiences (and predicament) of disabled and neurodiverse Ph.D. students, it is useful to situate them in the context of academic ableism. As J.T. Dolmage Dolmage put in their eponymous book, for a long time,
disability has been constructed as the antithesis of higher education, often positioned as a distraction, a drain, a problem to be solved. The ethic of higher education encourages students and teachers alike to accentuate ability, valorize perfection, and stigmatize anything that hints at intellectual, mental, or physical weakness, even as we gesture toward the value of diversity and innovation (OAPEN, 2017).
Dolmage (2017) examined how academia powerfully mandates able-bodiedness3
Note: terminology has been updated; we use “non-disabled” instead of able-bodied except for the cases when different terms were used in the cited sources.
Specific examples of the effect of academic ableism are discussed in many studies. Although, as we mentioned earlier, little is known about the experiences of disabled and neurodiverse Ph.D. students in LIS specifically, there are studies of Ph.D. students from the fields of education, computer science, psychology, health, humanities, among others (e.g., Callahan et al., 2018; Collins, 2015; Lizotte & Simplican, 2017; Lund et al., 2014; Shinohara et al., 2020; Wilson et al., 2018). Time and time again, concerns are raised that department administrators, professors, and advisors question if student accommodations are really needed, resorting to the persistent argument that accommodations do not align with nebulous “academic standards” and impact the “integrity of the educational process/curriculum.”4
Quotations ours for emphasis.
In other examples, accessible parking, building access, and classrooms may be lacking and, absent disability and accessibility awareness, may not be considered a priority; the same can be said about inaccessible technologies and course materials (e.g., Mattocks & Briscoe-Palmer, 2016, Mullins & Preyde, 2013, Shiels et al., 2021, Shinohara et al., 2020; Soorenian, 2014). In these cases, only lawsuits can extricate decision-makers from the state of indifference, negligence, and complacency; the question is how many people affected by and suffering from inaccessible spaces, in fact, find the time, energy, and resources to file a lawsuit?
The process of accommodations itself is rife with controversy, anxiety, and bureaucratic complications, not to mention that the implementation process is usually slow and, as such, often rendered unhelpful or belated (Sarrett, 2018). All these factors in combination create an oppressive environment for Ph.D. students, both as learners in higher education and as university employees. Using the term “oppressive,” we refer to
both a process of bringing about the situation and an outcome of the situation whereby individual people and groups are prevented from expressing their needs, thoughts, and feelings and realizing their full potential. The oppressive process and the oppressive situational outcome are created as a result of systemic constraints/structural barriers and oppressive actions of individual people in the position of power and authority, who engage in bullying, discrimination, and harassment and thus act as agents of oppression (Dali, 2018, p. 491).
Whether or not researchers use the term oppression, situations and processes fitting the above definition can be found, for example, in Clouder et al., 2020, Dali, 2018, Mattocks & Briscoe-Palmer, 2016, and others. Compared to non-disabled students, more disabled and neurodiverse Ph.D. students, realistic about their situation, report a larger concern regarding future employment and continuing isolation and exclusion following the completion of the doctorate (Mattocks & Briscoe-Palmer, 2016; Mullins & Mitchell, 2021; Nachman & Wilke, 2021).
Some other studies note that students with disabilities may find themselves at different stages of experience with and understanding of their disabilities (Mullins & Preyde, 2013). For instance, graduate students in psychology reported learning about their disabilities right before or during their programs, which impacted them in countless ways throughout their time in academia (Lund et al., 2014). Students with disabilities in computing reported varying success in obtaining formal accommodations for inaccessible research and writing tools, course content, lectures, research papers, and presentations (Shinohara et al., 2020). Additional studies suggested that many disabled students had mixed experiences with professors and supervisors in their programs (Clouder et al. 2020; Collins, 2015; Mullins & Preyde, 2013). Specifically, students with schizophrenia, other psychiatric disabilities, quadriplegia, and attention deficit disabilities shared the less positive faculty attitudes towards them (Lizotte & Simplican, 2017). As addressed by Sarrett (2018), autistic students in higher education commented on a lack of staff and faculty support, leading to recommendations on enhancing autism awareness, social accommodations, and training related to autism and neurodiversity in general. However, a challenging and exclusionary learning environment is not the only problem for Ph.D. students who, as we mentioned in Part I of this study (Dali & Charbonneau, 2024a, n.p.),
occupy a blended scholar-teacher-student position in academia. These intersectional academic identities also produce a unique set of professional, scholarly, and personal needs, aspirations, and expectations. What is certainly not unique though is the types of barriers that Ph.D. students encounter in their programs. Some of these barriers are shared by Ph.D. students with other groups of disabled and neurodiverse graduate students on campus while other barriers are shared by them with disabled and neurodiverse faculty members. The barriers can be related to physical spaces, course administration, workplace regulations, and technology access (e.g., Bowman & Jaeger, 2007; Callahan et al., 2018; Dali, 2018; Lund et al., 2014) among others.
That is to suggest that Ph.D. students also contend with the barriers of academia as a workplace, not only as an educational setting. As shown in many studies from different fields, which almost makes the following statements a common knowledge,5
We do not cite specific studies exactly because of how numerous they are; citing several studies out of many that can be legitimately cited would create an impression that only these studies provide ultimate evidence. We do believe that, as of today, the knowledge about disabled and neurodiverse individuals being disadvantaged at the workplace resides in the area of common knowledge.
This state of academia is even more troubling against the current societal trends. On a global scale, there is a growing number of individuals who identify as having a disability. According to the World Health Organization (WHO) (2023), an estimated 1.3 billion people experience significant disability, and this represents 16% of the world’s population (or 1 in 6 adults). In the U.S., 61 million, or 1 in 4 adults, live with some type of disability (CDC, 2023). At the same time, an increasing number of students in college identify as neurodiverse and living with autism, learning disabilities, or ADHD (e.g., O’Shea & Thurman, 2017). In fact, the need for better autism awareness and inclusion in higher education is very tangible (e.g., Sarrett, 2018). Similarly, according to the 2022 Canadian Survey on Disability (CSD), 27% of Canadians aged 15 years and older, or 8.0 million people, had one or more disabilities that limited them in their daily activities (Statistics Canada, 2023). Among persons with a disability, the most common disability type was pain-related disability and 62% of persons with a disability reported this type of disability (Statistics Canada, 2023). This was followed by flexibility (40%), mobility (39%), and mental health-related (39%) disabilities as the next most prevalent types of disability. There was also an increase in the prevalence of mental health-related, seeing, learning, memory and developmental disabilities from 2017 to 2022 (Statistics Canada, 2023).
This begs the question: How do we reconcile persistent academic ableism – in both academia as a learning environment and academia as a workplace – with the consistently growing population of disabled and neurodiverse students entering higher education and the academic workforce in increasingly larger numbers? The survey of the extant literature paints a not-so-cheerful picture whereby a considerable amount of work is needed to implement meaningful change and inclusion of disabled and neurodiverse people. Some of the steps toward this goal would be engagement with experiences of disabled and neurodiverse Ph.D. students, future academics, presented in their own words. This is the raison d’être for the current article.
To accomplish our goals of contributing to the insufficient but emerging number of studies focusing on the experiences of Ph.D. students, especially addressing the paucity of research in LIS, we conducted the online self-administered qualitative survey that examined the following Research Questions (RQs), outlined in the “Introduction”:
RQ3: How do disabled and neurodiverse PhD students in LIS see their academic and professional future in the post-COVID environment? RQ4: What are the experiences of disabled and neurodiverse Ph.D. students in LIS programs beyond the pandemic?
Potential participants were recruited using two LIS listservs. We also sent direct email invitations to Deans, Chairs, or Ph.D. program Directors in 53 LIS programs in Canada and the U.S. with doctoral programs to help us further share the survey invitation with students in their respective programs. Thus, we recruited a purposive convenience sample of individuals who self-selected for voluntary participation in our study. The survey inclusion criteria were as follows: Ph.D. students who identified as disabled and/or neurodiverse and were at any stage of their program or graduated in the 1.5 years prior to the survey. We did not include our own definitions of disability or neurodiversity in keeping with the notion of self-determination and individuals identified as disabled or neurodiverse based on their own experience and interpretation were invited to participate in the online survey. Please refer to the Appendix for the complete survey questionnaire.
The survey was fully anonymous, and we did not track IP addresses. In all, we received 42 responses to the survey that was administered for four weeks online in October 2022. Two email reminders were also sent out during this time to help boost the number of responses. The survey was approved by the Institutional Review Boards (IRBs) at the University of Denver and Wayne State University and pretested by four individuals before it was disseminated.
The SQUIN technique (Single Question aimed at Inducing Narrative) was a staple of the qualitative survey in question. It allowed us to collect rich, personal narratives from 42 respondents and generated new knowledge to add to our understanding of the academic lifeworlds of disabled and neurodiverse Ph.D. students in LIS. We use the insight gleaned from the first-hand accounts shared by survey respondents about their experiences through the Ph.D. path to offer recommendations to academic programs on how to foster a more inclusive and equitable environment for all members of the academic community.6
Albeit not verbatim, descriptions of the study methodology can be found in the other two papers published based on this study to date, namely (Dali & Charbonneau, 2024a, 2024b). The previously published methodological descriptions are much more nuanced and complete; this article, as a closing publication in the series, only provides a methodological outline deemed necessary for understanding the findings.
RQ3: How do Ph.D. students see their academic and professional future in the post-COVID environment?
“I am feeling trapped in grad school, because
I can no longer visualize life beyond it …”
To elucidate how participants see their academic and professional future, we applied several levels of coding: coding by the positivity of experience (positive or negative) and the level of experience (environmental, program-related, or personal), both used in Part I of this study (Dali & Charbonneau, 2024a), and an additional – temporal – layer of coding (the past, present, or future orientation of statements). The entirety of survey responses comprised 12,518 words. Out of them, only 953 words, or about 8%, encapsulated statements that were meaningfully future-oriented and reflected participants’ thoughts about their prospects in the program and/or on the job market. The statements raised from cautiously optimistic to anxiety-ridden to downright hopeless and, overall, painted a fairly bleak picture of how disabled and neurodiverse Ph.D. students see their future in academia post-pandemic. It is to be noted, however, that the pandemic was not the only reason for their pessimism; it was just one of the contributing factors. In truth, the pandemic had accentuated and brought into focus many issues that were at times barely beneath the surface but ever present. These issues included toxic academic cultures of overextension and overwork; bullying; ableism; hidden curricula; indifference to those viewed as different; and transactional rather than empathetic human relationships. This is very much in line with the identified barriers that are more numerous than support mechanisms that we identified and analyzed in response to RQ4.
To remind our readers, our methodological choice was to allow participants to focus on something that was important and consequential to them. The fact that future plans were discussed in so few cases and that the tone of these comments was mostly gloomy and melancholic is likely indicative of the state of mind in which disabled and neurodiverse Ph.D. students find themselves at this stage immediately following several pandemic years. It seems as though they are just trying to survive, focusing on the “here and now.” However, thoughts of the future occasionally arise in the context and are largely marked by doubts and the lack of hope.
We could distinguish responses pertaining to the near future and those connecting to a more distant future. In the short term, students were worried about how to get through the next semester, complete their thesis, or pass their comprehensive exams. Some mentioned that they were concerned about the effect of dissertation years spent remotely on the outcome of their writing, saying, “I don’t think [remote work] will be feasible for a dissertation. I am taking my qualifying exam [soon] and frankly, I’m worried that without strict progress deadlines, I will procrastinate on my writing and research.” Others were worried about diametrically opposite things; as one participant shared, “I am thankfully teaching online this semester, but I’m already stressed about what my assignment for next semester will be.” Another one echoed: “I will likely need to return to one more in-person course next semester. This will be difficult and gives me a feeling of dread. Thankfully, there should only be one more before I begin full time thesis work, which can be done in a location of my own choosing.”
Looking to the “day after” the Ph.D. defense, three participants were cautiously optimistic or hopeful that their careers would take off. As one of them noted, “I am really hoping that I can continue to do the program [remotely], and that when I graduate I can work remotely as well.” Another concurred, “I feel that going into the future, I look forward to and hope universities continue to have greater accessibility and accommodations for all students and faculty.” Finally, one more student hoped,
If I complete my PhD, I have post-doc opportunities which will not require my physical presence. If necessary, my necessary presence will be because the location provides access to desirable resources which are not available at home. However, as remote work is more and more common, it is an item high on my list […]
Others, however, were not as optimistic. The following responses are quite typical of their confusion, doubt, worry, and an unclear path ahead (emphasis in italics are ours):
Professionally and academically, I am not sure how I will likely [fare] post-doctoral as I have too little data related to the future job market and too little data on where my research is currently headed. To be honest, I am not very optimistic about my academic and professional future, because I am not sure whether I will find a job. I am depressed because my dreams of obtaining a doctorate may not be possible. This situation is forcing me to rethink my career goals. LIS has a known problem with underrepresented groups and disabled doctoral students are more at-risk struggling to complete the program without support. I am no longer sure however that I can handle the academic world post-PhD. I don’t want to have a tenure clock causing me panic attacks, I don’t want funding looming over my head constantly regarding grants and travel, I don’t want to have to be a teacher, counselor, administrator, and grant writer all wrapped up in one. Persons without anxiety and ADHD might find it a manageable system, but the academic system as it stands now that I am deep in it is much less appealing to me. Especially knowing (and being okay with) the fact that my conditions are not “curable” but a life-long management situation. I’m also concerned that a teaching offer might have me on campus rather than being able to teach online. I worry about my career post-pandemic because I am afraid that I will be forced to work away from home and my performance will decline because of it. I want to be a Professor after I graduate, but I’m not sure that I will be able to find a position like I want that allows me to continue working remotely. I’m on the path to be a highly qualified and effective candidate, but I am apprehensive about asking for the accommodations I need to be successful once I am no longer a student. Will I still get the job if I say I need to work from home to maintain high performance? I worry that I will not and I’m afraid to say anything. I think the most difficult portion of the course work is the writing focus. My ADHD and anxiety make writing difficulty. I have dysgraphia as a comorbidity with ADHD, which adds to the focus issues and pressures to perform. Since promotion is tied to a writing based productivity, it will be a lifelong struggle to find helpful remediations that allow me to write.
As one participant confessed, “The pandemic experience has made me more suspicious of people in general, and has made me feel hopeless,” while another provided an uncheerful summation: “I am feeling trapped in grad school, because I can no longer visualize life beyond it, even though I desperately want to finish.” Although we have chosen to include all relevant responses rather than a sample thereof, with full awareness that it adds to the length of this discussion, we think it is important for our readers to see the range of responses and the reinforcement of ideas.
RQ4. What are the experiences of disabled and neurodiverse Ph.D. students in LIS programs beyond the pandemic?
“Basically, I am tired, continuously anxious, and sad.
I don’t feel like a person.”
As we mentioned earlier, responses solicited in the course of this study brought to light issues that were not pandemic-specific and highlighted problems and barriers, as well as possible solutions, that existed prior to the pandemic and will persist into the future.
Barriers in the program
The coding applied has grown out of our own empirical data although we examined and were aware of other classifications of disability- and neurodiversity-related barriers. Toutain (2019) analyzed studies about barriers to prevent the full implementation of accommodations for students with disabilities in higher education and identified common themes in the literature. The key themes included a knowledge-based barrier (e.g, lack of student awareness of campus resources), the ability to secure accommodations (e.g., process of providing appropriate documentation to receive accommodations), and negative reactions from both peers and faculty members that students experienced upon disclosure of a disability (e.g., faculty refusals to implement, lack of understanding from peers) (Toutain, 2019). Goodall et al. (2022) examined the extant literature related to barriers and facilitators in the transition from higher education to employment for students and graduates with disabilities. Numerous barriers were identified and grouped into seven key themes: disclosure; attitudinal barriers and facilitators; accommodations; accessibility; institutional and organizational barriers and facilitators; discipline-specific barriers and facilitators; and disability-specific barriers and facilitators.
To remain true to the tenets of hermeneutic phenomenology, we still preferred to ground our coding in the collected data rather than use pre-defined existing categories from other studies. In our case, this part of the data analysis has several layers of coding. Two of them – coding by positivity of experience (positive or negative) and level of experience (environmental, program-related, or personal) – are shared by this data set with the data that served as a basis for the first study report (Dali & Charbonneau, 2024a). An additional layer of coding by type of barrier or support mechanism (physical spaces, virtual spaces and technology, policies and procedures, information and communication, attitudes and perceptions, and access to support services and networks) has also been applied. Negative experiences were deemed ‘barriers’ and positive experiences were deemed ‘support mechanisms.’ For instance, a lack of accessible physical spaces is a barrier; accessible physical spaces are a support mechanism. Our discussion below shows both barriers and support mechanisms that exist on the environmental, program, and personal levels. The classification of barriers and support mechanisms, with the exception of “access to support services and networks,” is derived from the recent study by Dali, Thompson, and Gillespie (2023). The definitions of barriers and support mechanisms stand as follow:
Physical spaces: accessibility of buildings, transportation, and campus in general; elements of layout and interior design; also includes such environmental aspects as mold, humidity, dryness, lighting, scents and smells, dust, and so on.
Virtual spaces and technology: communication technology (e.g., Zoom, Teams); integrated library systems and their essential elements, including cataloging, acquisitions, OPAC, etc.; offline technologies (e.g., electronic padlocks; automated doors; accessible applications mounted on local computer stations, etc.).
Policies and procedures: organizational structures, policies, regulations, guidelines, rules, and procedures that affect students’ work and learning experience.
Information and communication: information and communication that facilitates communication between faculty and students; program administrators and students and faculty; university leadership and individual colleges or programs, including means and styles of communication and information exchange or delivery.
Attitudes and perceptions: attitudes and perceptions by all parties involved, including disabled and neurodiverse students themselves, their peers, faculty, staff, administrators, and broader public, as applicable; these also include organizational culture and unwritten rules in organization.
Access to support services and networks: refers only to access to support services and networks (both formal and informal), on or off campus, including education-related, research-related, health, and mental health services; access to physical spaces is classed under “physical spaces” and access to technology and virtual spaces is classed under “virtual spaces and technology.”
Types of barriers associated with levels of experience (
67)
Types of barriers associated with levels of experience (
As shown in Table 1, 67 statements were distilled to denoted barriers felt by participants beyond the pandemic (i.e., felt prior or after the pandemic and/or created by factors unrelated to the pandemic, even if the pandemic could worsen or aggravate them). The greatest number of barriers were attitudinal barriers (55.2%), followed by the barriers rooted in policies, procedures, as well as organizational communication and shared information (25.4%). The next largest category was composed of barriers determined by physical and virtual spaces and technology, with the smallest category of barriers related to poor access to support services and networks, as defined earlier. In both – attitudes and policies – categories, the greatest number of barriers were environmental barriers, although the category of attitudes and perceptions was also associated with a fairly large percentage of program-related barriers. In general, environmental barriers produced the largest number of barriers across all categories (58.2%). Figure 1 provides a visual representation of how environment, personal, and program-related barriers outlined by participants played out in this study; although it may seem redundant to Table 1, this is a good visualization of the ratio of different types of barriers in our qualitative study.
Barriers faced by disabled and neurodiverse Ph.D. Students (
Barriers rooted in attitudes and perceptions
As mentioned earlier, this group of barriers was the most prevalent in this survey, felt at all three levels: environmental, program-related, and personal. Environmental barriers came to the fore through a series of interrelated issues. First, participants felt that disabled and neurodiverse Ph.D. students are often not heard and talked over in discussions and decision-making. Ironically, they are often asked for advice and input on relevant matters but, just as frequently, they are not listened to, with their advice ignored or dismissed, much to the detriment of the disabled and neurodiverse community, as well as a university at large. The following response serves as a good illustration of this issue.
I feel as though I am asked to do a lot of free labor on how to handle neurodivergent students which is frustrating and offensive. My [department] held a meeting on neurodiversity in the workplace and hired someone to speak who is not autistic but researches autism, which I explicitly told them not to, as I am not comfortable with ppl who are not autistic researching autism bc of the history of eugenics. This person then was extremely harmful and my [department] apologized saying they didn’t know. They did as I had told them this would happen. So I am both expected to give consultation and then am not listened to.
By the same token – and something that has been continuously mentioned in research and media publications, even those not focused on disability or neurodiversity exclusively – disabled and neurodiverse people are often left out of DEIA-related conversations, making these conversations about DEI and erasing the “A” (along with disability and neurodiversity) in the process. This brings about a situation when these groups of students feel lonely, disregarded, and unseen even among social justice advocates. Participants share their sadness and frustration.
I think this contributes to a larger aspect that I’ve been feeling on my campus, which is that physically disabled people are largely left out of conversations about diversity or anything else. I have had conversations with faculty and students who believe that the only disabilities we have on our campus are learning disabilities, or who truly think that our buildings are accessible. It’s really frustrating and makes me feel unseen and like I’m just making a big deal out of nothing.
Students brought up decisions and actions implemented about them and without them, with non-disabled and neurotypical people largely having the privilege of telling the disabled and neurodiverse story. As one person put it, “Academically, ‘accessibility design’ is a big part of the program here and it is mostly conducted by able-bodied researchers. I don’t feel like making my identity and disability a resource for the department.” These experiences often contribute to feelings of demoralization, hopelessness, and demotivation, taking excitement and drive out of the Ph.D. pursuit. As one person summed it up, “Basically, I am tired, continuously anxious, and sad. I don’t feel like a person.” Another participant confessed that
Over the years, I have come to resent the field and my department because I find much of the rhetoric to be hollow. This is not a human-centered field. I wouldn’t do this again if given the opportunity to go back in time.
Further exacerbating matters are the issues mentioned in many other sources that review disabled and neurodiverse people’s experiences at school, work, and in society at large. These include a lack of emotional or tangible support and basic indifference and uncaring which, according to some responses, is not individual or person-dependent but rather a deep systematic issue engrained in the institutional culture. As one student put it, “It is a lot of platitudes that aren’t matched with any meaningful support.” We thought that retaining full responses below was important; while these experiences are quite familiar to many disabled and neurodiverse individuals, others may remain oblivious to how complicated and perilous mundane things can become and how easy, in fact, to remedy them with a little consideration and simple adjustments.7
While it is a common practice to provide select quotes from qualitative data sets, we admit that we have omitted some very strong examples that detailed egregious actions of faculty and administrators toward Ph.D. students, including those that could make the latter legally liable for discrimination. This is done not to gloss over the strongest examples; this is to protect the identity of participants because some details of the cases are too specific and, therefore, revealing.
A physical aspect I’ve really struggled with is getting from place to place quickly on campus while walking. While I can walk, and often enjoy it, it takes me longer and makes me more tired than an able-bodied person would be feeling. My professors don’t understand this, and will send out advertisements for events that start a half hour after class ends and that are on the opposite end of campus. I can’t get there, because it’s too far and I refuse to make myself exhausted and in physical pain, and it feels like I’m missing out on educational opportunities that others are not. I have an autoimmune disease and am immunocompromised. Pre-COVID, I was actually considering quitting my PhD program because of the level of ableism I experienced in my department, among both faculty and fellow students. […] Traveling to conferences was a challenge as well because travel increases the risk of getting sick. For me, a simple cold can become a complicated case of pneumonia. In addition to that, I am severely gluten intolerant and dietary accommodations at conferences and during travel can be hit or miss. While I do not have an autoimmune disorder, my disability makes getting sick painful and I worry about how it will set me back if I get sick. We are no longer allowed to video call into classes and must attend school related meetings in person. While some faculty have been made aware of my situation since the disability services is unable to do anything they will not accommodate.
Systemic discrimination does not remove individual responsibility for ableist behaviors which, according to participants, have their source in preconceived notions, prejudices, and myths about contributions and capacities of disabled and neurodiverse people, as well as accommodations required by them for full participation in higher education. These usually thrive on low awareness of what disability or neurodiversity entails on the part of both faculty and fellow students and on the sense of impunity that colleagues and mentors feel expressing and acting upon ableist views. The following testimonies support this argument.
It stresses me out so much how little other faculty care about their students as people. Some openly admit to deleting emails from students they don’t want to deal with and telling students personal issues aren’t their problem. There’s also some instructors who perpetuate myths about accommodations in school and in the workforce and even my status as a fellow instructor and my background in [relevant fields] does not get through to them. ertain manifestations of my anxiety or ADHD exacerbate the way I am often viewed professionally by men such that I have regularly heard that I am flighty or emotional. What I want from an institution is flexibility and the right to work from home when possible without explanation. I also want digital access to a larger community of students.
When it came to program-related barriers, one of the largest clusters of responses pointed to the lack of optimism about participants’ professional and academic futures that was addressed under RQ3. Another cluster pointed to unreasonable demands of the program and/or curriculum that undermined students’ confidence and performance. More than one participant lamented what they deemed a “culture of overwork and self-exploitation” whereby “pulling all-nighters and working long hours was highly valued and expected and impossible for [students] to do.” Another participant described it as a “‘work until you’re exhausted’ mentality,” remarking that “with my physical disability, I simply cannot participate in it.” Yet one more student unequivocally concluded, “I could not, under any circumstances, recommend my program or doctoral work to anyone with any kind of disability, given the state of higher education in the United States.”
Adding insult to injury are the attitudes of peers and supervisors that range from implicit or thinly veiled bias to openly ableist behavior, according to students’ interpretations, as seen in the following examples.
I have one day a week that I do not come into campus and work from home (completing coursework, working on my TA position, etc.) and have gotten asked by other cohort members “when I even come in,” because they don’t see me in the office. This makes me feel bad, because part of the reason I don’t come in one day a week is to give my body a day to rest, and I don’t really want to have that conversation with my cohort members. I continued to TA virtually for two courses that semester. One of my bosses was not very understanding, which was incredibly ironic considering [they] literally had multiple lessons on [their] syllabus about disability and inclusion. They were frustrated that I couldn’t attend class in person and even suggested I was not “medically able” to be a TA. […] It was a nightmare of a semester with all of my health issues compounded by this professor’s unreasonable demands and the frustration that [they] repeatedly took out on me for having health issues to begin with. As the icing on the cake for that semester, I also got covid, which was miserable.
Finally, personal attitudes of disabled and neurodiverse students themselves may become a contributing factor in creating barriers. The habits of procrastination and a lack of motivation can aggravate difficulties caused by a disability or neurodiversity itself and/or by such environmental factors as the lack of curriculum or mentorship structure, empathetic supervision, and general support.
Barriers rooted in policies, procedures, information and communication
In this second largest category of barriers, two primary categories of environmental barriers emerged. First are those related to unwritten but implied and somehow understood rules of engagement and behavior in educational settings. A neurodiverse participant has shared their story, pointing to the differences in the perception of social interactions that may exist sometimes between neurotypical and neurodiverse individuals and signaling an underlying problem of misunderstanding and ignorance about neurodiversity. This ignorance results in failed or fractured interactions and non-inclusive communication that only perpetuate stereotypes and do not promote an equitable environment.
I also have difficulties because I really like collaboration, but I find the people seem to find me off putting. I ask how people would like to collaborate in terms of how often to meet, how they like to receive feedback, and if they like to talk about personal aspects of their life or keep it project related only. I find this to be seemingly jarring to people because they seem to expect the social dynamics of research collaboration to be universal and unspoken, which perpetuates ableism and disabled people having to contribute all of the access labor.
Another participant echoed,
I have always felt that if the rules were clearer, and so much wasn’t dependent upon whether you have an advisor who wants to make you their pet (and mine does not, nor do I want that), then I would be much more successful. Having to constantly wonder what it is I’m missing makes the stress and exhaustion worse.
One more participant spoke about specific barriers at academic events that could be overcome through sensible, inclusive, and considerate rules put in place.
Everything involves food, which I understand, but they can’t even bother to ask me about my dietary restrictions or remember half the time. My last institution asked people if they had dietary restrictions and who to email when an event was announced. No one does that here. When they do remember, it’s always a salad (I eat enough vegetables, thank you!). It’s the same with conferences, I usually have to find my own food.
Several comments also reinforce the feeling of loneliness and exclusion that disabled and neurodiverse individuals experience in academia, even amid the dedicated group of DEI advocates.
Second, many barriers are found in the process of formal disability accommodations, which brings this cluster of barriers into the legal sphere. Many participants note that the process is grueling, often dehumanizing and disempowering, both humiliating and invasive of people’s privacy, as well as lengthy, cumbersome, and expensive (if medical certificates entail additional costs). Complicating matters is the fact that, despite the time consuming and labor-intensive process, accommodations may not be as helpful as they should be; consistently with other sources, participants in this study mentioned that accommodations are of limited use specifically for graduate students and do not correspond with their real-life needs. Although certain complications were COVID-specific, barriers to accessing and benefiting from formal accommodations stretch way beyond the pandemic experience. As one student admitted,
I suffer anxiety every time I have to interact with the accessibility office. I don’t think administrators realized how COVID impacted students with disabilities. The progress achieved by ADA has suffering because of COVID as academic institutions try to accommodate disabled students in a COVID landscape. Depression, stress and anxiety are real impediment to learning which can lead to increase drop-out rates or opting out of enrollment all together. [
Another added details about how unreasonable the process of getting “reasonable” accommodations can be.
I have found my doctoral program incredibly difficult from a mental health perspective. I have chronic depression (family history of as well) and was denied accommodations from the disability office because I had insufficient documentation. They wanted doctors’ notes saying I was regularly bedridden before they would provide any accommodations.
Participants also remind us of the faulty assumptions often baked into the accommodations process, which become yet another barrier in their academic life and often discourage them from seeking accommodations in the first place.
I feel like there’s often an assumption that once students get to a PhD program, they have years of experience navigating their particular conditions and accessibility accommodations; however, that’s not everyone’s experience. The approach to requested accommodations so often relies on this process of disclosure and requests, which can be difficult to impossible to navigate if you don’t know what to ask for beyond support and patience. And I required *a lot* of patience while I was figuring things out, especially medication. One of the quirks at my institution, which I suspect is common across universities, is that our accessible services office has a reputation for being of limited use to doctoral students. Their recommendations and services are very much catered to an undergraduate experience (e.g., extra time on exams) which doesn’t translate well to doctoral work and expectations, particularly if supervisors choose to disregard the recommended accommodations (which are not binding and only issued as recommendations). Given how much doctoral work is extra-curricular – teaching assistantships, research assistantships, publications, volunteering – accessible education office has no purview over these other elements that are embedded in doctoral experiences but outside of the classroom. All in all, I have never registered with our accessible education office and have limited inclination to do so.
Participants also commented on the inappropriateness of some solutions proposed by accessibility services – solutions that only strain the relationships between disabled and neurodiverse students and their colleagues who do not require accommodations.
I had to work with disability services to get accommodations for my TA appointments because I could not keep up with the work. The solution was to have other TAs for the course take on some of my work, which was personally embarrassing for me because I didn’t want everyone else to know that I was having problems. I also requested accommodations for classes, but due to the nature of our courses there was limited help they could give. E.g., discussion classes where we read texts every week and talk about them; there was not really a standard accommodation available for me there.
Although we do not like to think about this possibility, some accommodation counsellors can be “rude and marginalizing when asked about support,” which left one participant no choice but to “secure[] external support and contact[] school officials to file a formal complaint against the accessibility officer”; this, by the student’s admission, was “a game changer” and their concerns were addressed. Even so, it left the student wondering if they reached their “academic peak because the accessibility policy at [their] institution has a one size fits all” approach. The following story was equally distressing.
I went through the disability center, but received pushback at every step. First, they called my diagnosis invalid because I initially received it from a doctor online. They said I did not need accommodations because I am a successful PhD student. I asked for help because I was struggling with the class and it was very disheartening to be told I didn’t need help (and wasn’t going to get it) after the monumental effort of convincing myself to ask for it. They said I could apply again after my primary care physician corroborated the diagnosis. She did, but it took 3 months to get in to see her and by the time I was able to do that the class was over. The disability center shouldn’t be able to decide which doctors’ diagnoses are valid. They should believe the student rather than making it more difficult to receive assistance. It is worth mentioning that this particular course was a required course outside of my home department that was not offered online and will not be offered online anytime soon. I did make an A in the course, but I feel that I would have benefited from assistance and I didn’t feel the same level of support from this instructor as I do from instructors in my home department.
The jarring combination of frustration, shame, fear, discomfort, invasion of privacy, and loss of agency was conveyed by yet another participant.
The process of claiming a need for accommodation was instantly met with forms and multiple retelling people about my […] diagnosis. And so I had to sing for my supper in the beginning. They wanted my full medical diagnosis so the school could determine my accommodations. I was furious. My doctor agreed with me. A non-medical body making decisions about my accommodations is unacceptable and my doctor asked what I needed and wrote the letter without my diagnosis. I paid $25 to have the letter written for accommodations that gave me more time during my defense and allowed me to carry notes to accommodate my poor memory (side effect of treatment). I also called the student president and the graduate studies office. It was horrifying because I hadn’t even told my whole family yet and here I was having to tell strangers.
The environmental issues addressed also find their manifestation at the program level, with students alarmed by the so-called hidden curriculum items that are inaccessible to disabled and neurodiverse individuals.
Organically connected to the challenge of getting accommodations are also barriers stemming from students’ personal circumstances. One mentioned most frequently is the difficulty of having their condition qualify as disability under ADA, especially, in the absence of a clearly recognizable diagnosis. The following responses clarify specific instances. As one person said, “Without a formal diagnosis, I do not count as disabled to most people.” Others recounted similar experiences.
I don’t have any diagnoses, but have had depression since high school, and struggle in everything I do. I also have some sort of undiagnosed autoimmune situation, and the fatigue, skin problems, chronic headaches, and pain that go along with it. In the PhD, I have struggled with exhaustion, compounded by the opacity of the academic system, and the hidden curriculum that makes it so hard to know what I’m missing. My chronic illness and learning disability also aren’t as well-known as other types, so even when I do ask for accommodation or explain my situation it takes a lot out of me.
Barriers rooted in physical spaces, virtual spaces, and technology
As in many studies related to disabilities, such environmental factors as inaccessible physical and virtual spaces, as well as the lack of accessible technology, have emerged as one of the barriers. At times, all of the above interlace to create a truly challenging environment.
Getting to campus is a huge pain in the ass, our internet is always out at the office, the food here is terrible and expensive, and the campus is covered in undergraduates driving their cars into things. This campus has no real public transit options so getting here is wildly difficult. They’re making everything in person and about half the college has had covid this year. I see the benefit – people are happier with people – but it’s REAL tedious.
This challenge is noted even by students who are happy and thriving in the program otherwise.
My university’s campus is widely inaccessible to physically disabled people, including low access to parking and non- or low-ADA compliant buildings. I have to get to campus at 7:45 every morning to get a parking spot that’s even remotely close to my building for the day, and then have to walk a considerable amount. By the time I begin my classes for the day, I’m already tired. I do have to say, though, that I love my program and I’m so excited to be pursuing my doctorate!
This type of barriers also has a manifestation at the program level, highlighting challenges that non-disabled and neurotypical people may not necessarily consider or think about. As one participant shared,
Pre-COVID obligations [were] to frequently be in high-volume shared spaces (e.g., classrooms, lecture halls, student offices, etc.) with many other people, and I found these obligations to be extremely unpleasant and distracting. I am autistic, and loud spaces and/or forced interactions with large groups are very difficult for me.
Another person recounted a similar experience, also stressing the significant of past trauma that exacerbate the effect of threatening and uncomfortable physical environments,
The sensory overload is unbearable and you are expected to enter loud bars to network. This interacts with my trauma as well, as I have experienced sexual trauma in drinking environments, which makes the interaction that much more overwhelming.
And yet, as both note, being and networking in these spaces is an expectation and an unwritten requirement of a Ph.D. program; those who cannot and do not participate in it usually stand out and raise eyebrows and questions. Their behavior may be misconstrued as the lack of diligence or care about their studies or program, or as arrogance and the lack of sociability and collegiality. None of these is true, of course; however, these misconceptions may persist, creating a context in which this student is viewed in an unfavorable light.
Barriers rooted in poor access to services and networks, formal and informal and other support systems
Most barriers identified in this category are environmental, with several barriers of personal nature. Emphasized time and time again is limited and difficult access to mental health help. For some, “mental health services here are difficult as most people are not taking clients or specialize in what [students] need.” For others, services may be rendered irrelevant if some “phone sessions,” for example, do not prove “as helpful in treating the conditions [the person] was seeking help for.” Another significant barrier is the loss of or detrimental change in family and community support networks tied into the need to move or commute to a different geographic location in order to complete the program, as shared by one participant:
I live over an hour away from campus by public transportation, and having moved halfway across the country my support networks are shifting. I don’t have my ceremonial community […]
The latter comment dovetails into the personal – financial, in this case – difficulty, which is something common to several participants, with things like “the low stipend rate” making it difficult “to make rent” and “causing additional stress.” Some students also noted that medical insurance available to them does not sufficiently cover their needs as disabled and neurodiverse individuals.
“I am lucky to have a great advisor and relatively good support all around […]
but I worry others don’t have this benefit while having similar conditions to me.”
Interestingly enough, unlike barriers, support mechanisms fell only into two categories: attitudes and perceptions; and policies, procedures, information and communication.
Attitudes that help disabled and neurodiverse Ph.D. students
Most responses in this category talked about personal attitudes, perceptions, approaches, and actions taken by individual faculty members, professors, advisors, and mentors, that make the world of difference in the lives and academic success of Ph.D. students we surveyed. It is heartening to hear that from one student,
My advisor was amazing throughout the entire process and was willing to go to bat for me whenever necessary. She let me attend our group mentoring sessions with her advisees via Zoom while they all met in her office and accommodated me any ways she could.
Students particularly appreciated faculty members who were understanding and compassionate and did not require formal accommodations but took students’ word at face value and worked collaboratively with them to find the best, most suitable solution. They also spoke highly of faculty who adhered to inclusive practices irrespective of their knowledge of the person’s disability, which can be illustrated by the following example.
My other boss who I also worked with last year has never had any issue with my working remotely and has never pushed me to come to campus for any reason, even before I confided in him about my issues.
Another person recalled their advisor being “incredibly understanding” and allowing them “to postpone working in the project” when they experienced a “health turn for the worse” and were “confined to [their] apartment.” Some faculty seem to build inclusive practices into their mentorship routine, as shared in the following response.
My major professor and I have agreed to meet in person once a week at local coffee shops to discuss my progress, and this weekly check-in has been helpful to keep me on track. I think that having a supportive major professor is key in this process, and I’ve been incredibly lucky to have such an amazing mentor. I know that not every PhD student requires this level of involvement with their major professor, but for me, I believe that it’s necessary for my success.
Described here is more than an effective and inclusive initiative, however; it is an indication of a human connection, relationship building, collegiality that is so essential to creating a healthy and supportive environment in academia, as well as to the education of future generations of scholars and educators. The question is, of course, should it be a norm, a model of what faculty and advisors’ approach is like when they work with disabled and neurodiverse Ph.D. students or is it unrealistic to expect this type of commitment from individual faculty members, who are not only overloaded with their routine responsibilities for teaching, research, and service but also must find some balance to live their private lives and attend to their families. By embracing a diversity by design mindset, we might see a shift in thinking about supporting all students. Along with training and resources, faculty could view this as part of their mission of engaging with students rather than “additional work” or an add-on. Another related question is what can be done systemically, on the institutional level, to sustain faculty members’ efforts effectively to allow them to continue being responsive to and proactive about students who need individualized approaches without burning out.
Although the importance of faculty attitudes was brought up most often, participants also mentioned how crucial it was to have a supportive team overall.
I would like to interject here that my experience within my department has been wonderful. I have a very supportive advisor and wonderful colleagues. Within the last year, I have felt more comfortable sharing that I have ADHD and offering more explanation for declining some campus activities because of my physical struggles. When I started with another research boss this semester, she initially had an expectation that I hold weekly hours on campus, but after sharing everything with her she was understanding and has reduced that requirement to once every two weeks, which is much more manageable for me.
However, even participants who have a supportive environment realize that this is not consistent across the board and acknowledge thus:
I am lucky to have a great advisor and relatively good support all around (no evil committee members like the horrors you hear about), but I worry others don’t have this benefit while having similar conditions to me.
Participants were very generous to share their opinion in great detail – experience where they took charge, prioritized, and focused on the most important thing for them and their communities. Some supports are easier to notice than others, but we see a happy emergent academic and a confident instructor in those who value both student agency and student progress. The following experience is an excellent example of struggles, triumphs, and incredible personal growth in a supportive and inclusive environment.
When I have asked for feedback, [my supervisor] has told me that my work is very good but I struggle with consistency, which is true. It is part of my neurodivergency that I will hyperfocus on one thing at a time and run with it and I struggle with task initiation and have days where however much I fight my brain I cannot do the things I need to do. I combat this by working ahead on everything so that when I have those inevitable low-function days I do not get far behind. As a PhD student, I feel that I’ve made wonderful friends that I wouldn’t have otherwise met without this experience and I am exactly where I should be because I love the work I am doing and I am good at it. I manage my time well despite my neurodivergency, and I am successful in my research endeavors, co-authoring a handful of publications already under the guidance of my research boss. I feel intimidated by the dissertation process, but I know that I can do it. I do, however, feel that it takes me more time to do things than it does neurotypical people. I think this is another reason that I try so hard to work ahead. I told my boss that my 10 hours is not the same as his 10 hours and it often takes me more time to do things because of my neurodivergency and I cannot seem to do those hours at the same time every week because I have to follow what my brain wants to do at the moment to be most effective at my work. I work in an oscillating pattern rather than a straight line. I have little control over what I can work on when, because my work is best when I follow the dopamine, and it takes me much longer to start or finish something when my brain hasn’t decided that is the thing we can do at the moment.
Despite the length of this reflection, we have chosen to provide it in full because it is very holistic in nature and because we feel that it is the kind of firsthand knowledge that is absolutely essential for us to have in order to understand and empathize with neurodiverse and disabled students and to build enough flexibility and sensitivity into the curriculum and other program aspects to make it welcoming to a diverse group of individuals.
Aside from the attitudes by faculty members and advisors, which essentially grow out of students’ learning environments, participants’ own attitudes are very important and form an element of their support system. The other elements of the system are resources, access to experts and mentors, and specific technologies available. Of course, there should be support mechanisms in the program or in the broader environment; however, it is a student’s responsibility to figure out how to learn from the experience and resources, with which they are provided.
One issue is that for those with ADHD especially the idea of a fully self-run program is daunting. I have a number of coping mechanisms set in place for trying to meet goals and deadlines and to space out my work appropriately, but advice on this is always welcome and useful. Being able to be an RA in the full span of a research project demonstrated to me how to successfully use a GANTT chart for example, a resource I wouldn’t have know about. How to segment and lay out to-do lists, especially when modeled for me, is fantastic. Seeing past iterations of things, such as our master’s exams, dissertations, proposals, and documentation gives me something to start with, and narrows my focus from anxiety of the infinite possibilities to something much more concrete. In many ways I have been lucky to encounter these things or seek them out.
Time management and the effective information access, storage, and retrieval are examples of other support mechanisms that disabled and neurodiverse Ph.D. students have in the program.
The last comment also indicates what can be changed in terms of educational approaches and techniques; another comment reinforces it by stressing the principles of universal design for learning, specifically,
Things all graduate students could find useful: workshops on time management and project management. Networking workshops. Advisors who are not just good scholars but good people. Administration that recognizes the individuality of their students and that achievement doesn’t always look the same.
Personal attitudes of disabled and neurodiverse individuals themselves, surprisingly amplified by the pandemic, also make a positive difference in educational settings. As one participant shared, “my openness about my disabilities and my strongly neurodiversity-positive teaching has had another significant impact – I get a lot of disclosures of crises from students – about 1 in 25.”
In terms of policies, participants mentioned some legal protection afforded by the disability legislation although legal limitations in application to real-life situation were mentioned much more frequently, as described earlier.
Discussion
We framed this article, that is, the second report based on the study of disabled and neurodiverse Ph.D. students in LIS, using the concept of academic ableism. The earlier literature review allowed us to glean the main tenets of academic ableism, including but not limited to the following:
The construct of disability and neurodiversity as “the antithesis of higher education” – “a distraction, a drain, a problem” (OAPEN, 2017); Unchecked ableist beliefs allowed to be put into action and encoded in policy; Underused and ineffective accommodations that should be available by law, whose application often borders on traumatizing; Inadequate disability services on campus; Attitudes of suspicion, dismissal, distrust, and indifference on the part of those who hold decision-making power of graduate students, including administrators, professors, advisors, and disability officers; The preponderance of a myth that reasonable accommodations do not align with (nebulous) “academic standards,” violate these standards, and cause them to drop whereby impacting the “integrity of education”;8
Quotations ours for emphasis.
Stigmatization of disability and neurodiversity;
Tremendous toll of ableism and discrimination on mental and physical health;
Inaccessible physical and virtual spaces and course materials; and
Institutional culture of systemic exclusion.
In our study, these theoretical propositions were manifested through the four groups of barriers that disabled and neurodiverse Ph.D. students experienced in their programs: barriers rooted in attitudes and perceptions; barriers rooted in policies, procedures, information and communication; barriers in physical spaces, virtual spaces and technology; and barriers in access to support services and social, professional, and scholarly networks. All of these and more have reverberated in participants’ accounts time and time again. The jarring, painful, frustrating experiences narrated by participants pointed to yet another attribute of academic ableism: institutional oppression. We do not use this word lightly and emotively. We took care to define it and explain how we used it in our article. The truth of the matter is that the multiple barriers and the constant need to overcome them, expending time, energy, and resources, strip individuals of agency, dilute their control over the progression of their studies and career and, at the outcome, deny them the opportunity to realize their full potential and to achieve their full capacity. That’s the crux of oppression, defined not in political but in everyday practical terms, and it would be useful if we could recognize academic ableism for its oppressive effect.
This is the first suggestion that we would like to give faculty, administrators, and staff who guide disabled and neurodiverse Ph.D. students through the program. We would also ask them to recognize that systemic barriers do not remove individual responsibility. As our data show, even in ableist and oppressive environments, kind, supportive, and thoughtful actions of individual faculty members made a difference and mitigated the effect of systemic failures and deficiencies. By extension, the best, most helpful policies can be rendered less useful if individuals choose not to implement them in good faith and, instead, act oppressively and discriminatorily (see also, Dali, 2018, p. 491, 505). According to participants in our study, systemic barriers do not remove individual responsibility for ableist behaviors, which have their sources in preconceived notions, prejudices, and myths.
We therefore ask academic community members to exercise reason, be kind, and implement fair and equitable practices when disabled and neurodiverse students are concerned, irrespective of institutional policies. As a simple example, we ask them to believe students’ stories and descriptions of their needs and do what humanly possible to compensate for the deficiencies of our higher education system that was never designed to include a growing number of disabled and neurodiverse students at such advanced stages of academic work. Only the most challenging cases would then be left for disability offices to handle; those are the cases requiring substantial modifications of physical spaces; changes in scheduling or administrative processes that significantly affect other students and/or peers; or an acquisition of expensive technology, for example.
Faculty members and administrators should become more intentional in creating professional development opportunities for students who cannot participate equally in current offerings, be it conferences or other events on or off campus. They should continue capitalizing on the potential of remote technologies to provide inclusive opportunities and to level the playing field for disabled and neurodiverse emergent scholars. Very often, the main barrier to having more remote opportunities is an attitudinal one – the lack of care or consideration – not organizational or technological difficulties.
We ask higher-level decision makers to consider providing professors, advisors, and supervisors with both more education related to specific types of disability and neurodiversity and more support for creating accessible materials and attending to the unique situations of disabled and neurodiverse Ph.D. students. If faculty members invest in learning about autism spectrum, ADHD, or the deaf culture, it should count as professional development, on par with conference attendance and taking continuing education courses. Similarly, efforts to improve accessibility for individual students or for entire departments should be tangibly recognized and acknowledged during promotion, tenure, and annual evaluation. Disability and neurodiversity inclusion and accessibility are not one of the areas where we can cut corners. This is not one of the areas that can be considered a bonus, or an add-on; this is one of the areas that truly needs to be designed into the various aspects of the Ph.D. program (Dali and Caidi, 2017) or, at the very least, urgently retrofitted into the program as it is offered in present. If this does not happen, the frustrating situation when disabled and neurodiverse Ph.D. students cannot serve as ambassadors for their programs – or the field of LIS as a whole – will be perpetuated.
We need to continuously work on improving accessible spaces and accessible technologies, valuing this type of work and instilling respect for this kind of work in our colleagues and students. What happens, for example, if an employee tasked with adding alt-text to lecture slides refuses this type of work, claiming that it is “boring,” “monotonous,” and does not result in any beneficial learning or professional development? If this uninformed arrogance turns into a prevailing perception of accessibility in the LIS and academic community, there is no hope for a collective coordinated effort to include disabled and neurodiverse students in educational spaces.
As we shared earlier, this article was not originally planned at the start of our research. We thought that the information related to “before and after” the pandemic will serve as a context for our discussion of Ph.D. student experiences through the height of the pandemic. Yet, it has expanded into a separate report. When we processed and reviewed the data, the ensuing conclusion was bleak. Essentially, our findings have corroborated the findings of studies of disabled and neurodiverse Ph.D. students from other fields and backed up the knowledge derived from the studies on how disabled and neurodiverse individuals fare in educational and workplace settings in general. Bit by bit, our data illustrated the major tropes of academic ableism and its manifestations in the academic field of LIS. Under the circumstances, it would be legitimate to ask what novelty this article brings to the discussion of disability and neurodiversity in academia and what it tells us that we do not already know.
In our view, it makes four significant contributions. First, we put the spotlight on the phenomenon of academic ableism, which is not something that it discussed too frequently in LIS forums or LIS literature but something that affects all disabled and neurodiverse members of the academic communities in very profound and lingering ways. This includes undergraduate and master’s students, faculty, staff and, of course, Ph.D. students whose positionality on campus, as we noted, is an amalgam of all of the above. We believe that naming the issue for what it is and making a concerted effort to address it from the standpoint of both awareness and policy is an imperative for LIS program and the field of LIS as whole.
Second, we could not find a comparable study emanating from the field of LIS. At the same time, LIS likes to position itself as a scholarly field and a profession at the forefront of accessibility and inclusion. After all, with our focus on technology, information literacy, and communities, we should be expected to be a model of awareness, accessibility, fair policies, and inclusivity. And yet, as our study shows, it is sadly not the case. We are afflicted by the same academic ableism as the other fields of academia and practice. In a sense, our research provides a not-too-cheerful an answer to the question posed in the recent book chapter by Dali and Jaeger (2023): “Could it be that, despite heralding our profession as a leader in learning, accessibility, and social justice, we, in fact, are the ones who cannot unlearn” (p. 62) discriminatory and ableist practices?
The third contribution of our paper is closely related to the first one. The study was done in the fairly recent, raw, and unique situation of the pandemic. Despite the accounts of academic ableism prior to the pandemic, we harbored some hope that, following the dramatic, lifechanging experience of individuals and entire societies, academic ableism would begin to recede. As our findings show, this is not the case either. Au contraire, as we noted above, the pandemic only accentuated and brought into focus many issues that were at times barely beneath the surface but ever present.
Strikingly similar accounts in quite a few survey responses in such a small sample were indicative of the severity of the problem. Time and time again, disabled and neurodiverse Ph.D. students from different LIS schools validated each other’s experiences and feelings with alarmingly powerful stories. In and of itself, this is yet another contribution of this piece: to open up access to the stories of those from whom we do not hear often and, lamentably, to whom not many in the academic community – including DEI advocates – want to listen.