Abstract
People with visual impairments (those who are blind or who have low vision) continue to experience an unemployment rate of 70% or higher across all sectors but remain especially under-represented within higher education and the research ecosystem. Among the barriers emphasized by people with visual impairments are those related to accessibility and inclusion. It is within this socio-historical context that we began our interactions as a blind graduate student (Martiniello) and a sighted PhD. supervisor (Wittich) in the process of completing a doctoral program in vision science. Utilizing duoethnography as a methodological approach, we juxtapose two perspectives on a shared experience. Over a period of five years, we explored the ways in which our interactions as a trainee with lived experience and sighted ally have shaped our perspectives on disability inclusion in (and while doing) disability research and the role of allyship in the context of academia. We use examples from our lived experiences to illustrate the ways in which we negotiated the role of allyship throughout the research process, including the impact of accessibility and inclusion while completing a scoping review, semi-structured interviews and thematic content analysis. These collective experiences set the stage for new forms of advocacy and allyship to emerge. To the best of our knowledge, Dr Martiniello remains the first and only blind person to graduate in Canada with a PhD in Vision Science. Hopefully, she will not be the last.
Keywords
People with Visual Impairments
According to the World Health Organization (2019), there are an estimated 253 million individuals with a visual impairment worldwide, of which 36 million are blind and 217 million have moderate or significant low vision. Most definitions are derived from behavioural measurements of visual acuity (the ability to view detail at various distances) or visual field (the area an individual can see when viewing straight ahead) (Lee & Ottowitz, 2020). Many countries in the Global North have adopted a legal definition of blindness to determine who is eligible for specialized services, including disability accommodations in higher education and financial support for the attribution of assistive devices for reading and writing tasks (Corn & Erin, 2010). Legal blindness is typically defined as a central visual acuity of 20/200 or less in the better eye with best standard correction, or a visual field that subtends a horizontal angular distance no greater than 20° in the better eye (Colenbrander, 2003). However, it is well recognized within the field of visual impairment that individuals with low vision who do not meet this legal definition may nonetheless experience functional vision limitations depending upon environmental conditions (colour, lighting, and contrast), the nature of the visual stimulus (such as size of font) and fluctuating vision due to such factors as time of day or additional disabilities (Enoch et al., 1999). Moreover, there is a rapidly increasing prevalence of acquired visual impairment due both to population growth and aging, with the number of those with acquired vision loss expected to double in most Global North countries over the next three decades (Varma et al., 2016). In addition, there is also a growing segment of the population with combined vision and hearing impairment, with an estimated 15 million people with significant deafblindness globally (World Federation of the Deafblind, 2018).
Visual Impairment in the Health and Rehabilitation Ecosystem
Despite traditional literary and cultural tropes which have the propensity to present people with visual impairments as a homogeneous group (Koestler, 2004), there is a wide degree of diversity based both upon level and onset of visual impairment and the impact of intersectionality on lived experience (Milian & Erin, 2001). People who are blind, deafblind or who have low vision may use a myriad of methods to access information including braille (a tactile system of reading and writing), screen magnification and audio-based text-to-speech software (Corn & Erin, 2010; Lee & Ottowitz, 2020). While some individuals may have visible visual impairments, as is the case for those who use a white cane or dog guide for orientation and mobility purposes, there are also a vast number of those with invisible visual impairments who may choose not to disclose due to perceived stigma and the fear of discrimination in education and employment (Shinohara & Wobbrock, 2011). Despite the growing number of students with disabilities (including those with visual impairments) who are graduating with a post-secondary degree, the unemployment rate for persons with visual impairments remains at an astounding 70% or higher (Martiniello & Wittich, 2019). Moreover, people with visual impairments are more likely to experience under-employment, suggesting that they are not hired in positions that are reflective of their education and do not have equitable opportunities to advance to positions of authority and leadership in their respective professions (Wolffe, 2019). This is especially emblematic of the fields of science, technology, engineering, and mathematics (STEM) and the health research ecosystem (including the rehabilitation sciences), where there remains an under-representation of researchers and scientists with visual impairments (Swenor & Meeks, 2019).
The lack of diversity within the disability rehabilitation field in particular carries significant implications for both research and practice. People with disabilities bring critical first-hand perspectives that are vital to significantly enrich research and implementation science (Swenor et al., 2021). There is a recognized need to include people with lived experience more meaningfully at research inception (Watharow & Wayland, 2022), both by using integrated knowledge translation methodologies and by advancing opportunities for principal investigators with lived experience (Swenor et al., 2020). Just as it is essential to ensure that decisions impacting other equity-seeking groups (i.e., race, gender) are led by members of those groups, the meaningful inclusion of leaders with disabilities in the rehabilitation sciences ensures that research questions, technology design and services are not based upon unconscious biases about what people with disabilities need or want (Mankoff et al., 2010). Likewise, there is a growing urgency, instigated by disability-led initiatives from within the scientific research ecosystem, to include accessibility and systemic ableism within broader conversations on equity, diversity and inclusion (EDI). Such efforts help to ensure that future leaders better reflect the diversity of the populations they serve. Additionally, positioning disability as a social construct within broader EDI discussions helps to foster self-reflection and allyship, by highlighting that disabling barriers are often rooted in perceptions and environments that societies have the collective power to change (Shakespeare, 2013).
Accessibility and Ableism
Among the disabling barriers experienced by trainees, researchers and faculty within the higher education ecosystem are those related to accessibility (equitable access to information and environments) and ableism (the often unconscious but undeniable biases about disability that contribute to exclusionary policies, practices and perceptions that are often systemic in nature) (Brown & Leigh, 2018). Although advancements in technologies that translate standard print into large print, auditory or braille formats have increased accessibility, publishers and software developers do not consistently apply “born accessible” principles or existing international web content accessibility guidelines (WC3, 2008). For example, much of the visual content characteristic of the health and (re)habilitation domains (figures and graphs) remain unusable to blind trainees and researchers if descriptive captions (commonly referred to as alternative text descriptions) are not appended to such images. When academic institutions do not require accessibility as a prerequisite for the procurement of data analysis software and published materials, the burden of obtaining accessible formats as accommodations to retroactively address these barriers often remains the responsibility of those with disabilities, a timely and costly effort (Godfrey & Loots, 2014). As a related concept, usability (the extent to which physical and online spaces are designed to be user-friendly) is also shown to affect the extent to which users with diverse needs can navigate efficiently, even when accessibility has been considered (WebAIM, 2021). For instance, websites with properly labelled images and buttons can nonetheless pose barriers for users when information is difficult to find or hidden within complex layered links (W3C, 2018). In addition to users with disabilities, such considerations may also impede access for individuals more broadly, including second-language speakers, older adults, and those with lower technological competency. Such accessibility and usability barriers contribute to a higher attrition rate among post-secondary students with disabilities, including those with visual impairments, who may otherwise significantly contribute to knowledge generation and leadership within their disciplines (Fichten et al., 2016). Such accessibility barriers permeate the research cycle through inaccessible research funding processes, data analysis software, scientific conference platforms, and journal publications (Arias-Flores et al., 2021).
Moreover, there remains a tendency to view disability through a deficit or medical model lens in health and rehabilitation literature, which contributes to the reinforcement of unconscious biases and the notion that blind trainees and colleagues may be unable to succeed or perform to the same degree as their sighted peers (Careers Research & Advisory Centre, 2020). Contemporary narratives of disability are deeply entrenched within a historical tradition of perceiving and responding to people with disabilities as recipients of charity and symbols of pity (Koestler, 2004). According to the medical model, disability is a problem that is inherently located within the individual due to the existence of an impairment (e.g., a person is unable to see). The solution to disability is consequently found within approaches (such as surgical procedures and the use of compensatory aids) which aim to correct perceived personal deficits so that individuals can function as closely as possible to normative expectations (Shakespeare, 2013). Indeed, the very concept of the normative curve or average, first proliferated by the birth of statistics in the 19th Century, functions as a mechanism to rank individual characteristics (such as talent, intelligence, performance, height, and weight) and has been used by 20th Century eugenicists to justify the eradication and inferiority of minority groups, including people with disabilities and racialized persons (Davis, 2013). In the context of health and rehabilitation science, the notion of disability as deficit has often positioned people with disabilities as patients and participants, rather than as research colleagues who may also work alongside others.
While medical advancements and the development of increasingly sophisticated assistive technologies remains important, people with lived experience have also underscored a need to ensure that future researchers, leaders, and practitioners have opportunities to meaningfully interrogate unconscious biases about disability that persist and to reflect upon the role played by others in creating and maintaining disability as a social construct (Mellifont et al., 2019). According to the social model, initiated by the disability rights movement, a distinction must be made between impairment, such as the inability to see, and disability, the process of being disabled do to societal structures that are designed to include some and exclude others (Shakespeare, 2013). Individuals are disabled when physical, learning, and virtual environments (such as universities, websites, data analysis platforms, and journal publications) are not proactively designed to better accommodate the natural variability that exists among all people (Rose & Meyer, 2002). If blind trainees are provided with printed information in an accessible electronic format, they are not disabled in that moment, though they are blind. Likewise, when journal platforms are proactively designed to conform with existing web accessibility guidelines, users with diverse needs are not disabled from reading and submitting content to advance scientific knowledge. The process of dismantling disability is thus understood to exist within the principles of universal design which stress the importance of ensuring that environments are constructed to be as accessible and inclusive as possible from the start (Story, 1998). Within academia, such a definition of disability removes the burden wholly placed on individual students and faculty to seek accommodations. Instead, it calls upon institutions of higher education to consider the ways in which training environments can be proactively designed to remove disabling barriers and minimize the need for retrofitting and additional accommodations. Such an empowerment-centered approach to disability, which emphasizes the power individuals collectively possess to minimize or eliminate disabling barriers, is especially embedded within decision-making processes when people with first-hand perspectives are included within positions of leadership. From an economic standpoint, proactive accessibility and universal design is also shown to be far less costly than retroactive approaches (Wentz et al., 2011).
In recent years, there has been a much-needed expansion of dialogue on EDI within academia, to emphasize the different facets that may bare upon the experiences of under-represented groups, such as racialized persons and women within the sciences (Tzovara et al., 2021). Recent testimonies, however, have accentuated that recognition of the intersections between EDI, accessibility and ableism still too often remain absent from such conversations (Fovet, 2018). Although some have adopted the acronym EDIA or IDEA, adding the term accessibility within broader discussions on equity, diversity, and inclusion (e.g., see Association of Research Libraries, 2023) – is by no means a customary practice as of yet.
Centering Lived Experience and Auto-Ethnography in the Rehabilitation Sciences
As an increasing number of individuals with visual impairments pursue higher education and positions of leadership, evidence-based research and documented personal testimonies from those with lived experience remain essential to move beyond understanding facilitators and barriers and to sustainably and meaningfully advance inclusion, diversity, equity, and accessibility within these contexts. There is a growing call for student auto-ethnographies to more fully encapsulate the experiences of students with disabilities and to inform the advancement of accessibility and inclusion initiatives within institutions of higher education (Fovet, 2018). In addition to centring first-hand voices and experiences, the role of allyship – meaningful self-reflexivity and support from those within the scientific community without disabilities – remains vital to move inclusive science forward (Anjali et al., 2019). Rather than speaking on behalf of people with disabilities, discourse on disability allyship increasingly emphasizes that supportive allies are those who remain reflective of their own unconscious biases and who stand in solidarity alongside disabled trainees and researchers to elevate their voices, amplify their messaging and listen and learn from the perspectives they bring to advance a disability-positive notion of inclusion. One recent example of allyship among researchers and trainees with and without visual and dual sensory impairments is the establishment of the
The purpose of the present duoethnography is to highlight themes of accessibility and inclusion that we encountered in the context of completing a PhD in Vision Science (with a focus on visual impairment rehabilitation). While rehabilitation (the learning of non-visual independent living skills) is an essential aspect of adjustment after acquired impairment, the decision to interchangeably use the term (re)habilitation (with parentheses) in this manuscript problematizes the historical tendency to focus solely on the individual and recognizes that the disablement that many blind individuals experience stems from external perceptions and actions that must also be addressed. We are approaching this as a dialogue, from the perspective of a former doctoral trainee (now PhD) who is blind, and a sighted supervisor, with the goal of illustrating how we navigated systemic barriers, and some ways in which this informs future work to advance accessibility and inclusion for researchers with disabilities.
Research Process
Duoethnography
Duoethnography as a qualitative research methodology to explore individual narratives on a shared experience has predominantly been used in the fields of education, sexual identity and sexual orientation, feminism, as well as race and color, only to name a few (Sawyer & Norris, 2012). There are, however, more examples emerging where duoethnography has found its way into disability research, including the exploration of identity from the perspectives of two siblings with disabilities (Gibbons & Gibbons, 2016), equitable and inclusive access to outdoor environments from the perspective of a person with a disability and their outdoor accessibility rehabilitation professional (Loeffler & White, 2022), or most recently the experience of women of color with epilepsy (Lopez & Xu, 2021). One study that particularly influenced the present duoethnography is the work by Abes and Zahneis (2020) who explored the relationship between a non-disabled academic supervisor and her student with a physical disability. Their professional relationship was grounded in interacting as researcher/participant, professor/student as well as co-instructors for a university course.
Methodology
In line with previous ethnographies (Huckaby & Weinburgh, 2012; McClellan & Sader, 2012; Shelton & McDermott, 2012), we found that our process was facilitated by structuring the manuscript through subheadings that pair various experiences to the concepts of inclusion, diversity, equity, and accessibility. We met at least monthly throughout the 5 years of this PhD process, with more frequent meetings in the initial 2 years. The main purpose of these meetings was to orient Natalie in the process of being a PhD student, to initiate Walter to the basics of accessibility technology for blind persons, and to discuss and hopefully resolve anticipated accessibility barriers. Over time, the reflections on our experiences with this PhD process took more and more space in our discussions, prompting us to produce the present manuscript.
We did not keep systematic notes at every meeting during this 5-year period, but did keep track of milestones (e.g., the discovery of important accessibility solutions) that informed the progress and the choices we made to ensure the progress of the PhD path; however, we both had saved every email follow-up communication during that time to support the timeline. At the time of writing, additional data sources included opinion pieces on Twitter (now X) and Facebook that Natalie publicly posted during her PhD studies. These posts have unique meaning because Natalie often reflected on aspects of her PhD path and exchanged these thoughts with other blind graduate students in these public forums. These posts are very authentic, were written from the heart, without influence of intending to be data sources, and provide both factual and emotional information that describe her development as an early career academic. In addition, we had access to email exchanges as well as Zoom call recordings that we conducted starting at the beginning of the pandemic, that we reviewed to plan the structure and content of the duoethnography.
Based on these data and following the guidance on duoethnography provided by Sawyer and Norris (2012), we generated the dialogue we present here (our storytelling) and conducted our analysis simultaneously. Our three main data sources (notes, emails, social media posts) allowed for a certain degree of triangulation to reconstruct and frame key events presented in this duoethnography, thereby providing more trustworthiness (Noble & Heale, 2019). Over a period of approximately 1 year after Natalie’s PhD defense, we met every few weeks, remotely or in person, exploring our data sources together, deciding on relevant anecdotes, sorting them chronologically, and discussing how each of the content pieces related to equity, diversity, inclusion and/or accessibility. Given that we were our own source of data, we operated as each other’s quality and content control, in a way our own version of member checking (Birt et al., 2016; Carlson, 2010). We supplemented this process further through repeated exercises in reflexivity, a process that continues to this day and facilitates our collaboration between person with a disability and her ally (Barry et al., 1999; Koch & Harrington, 1998). This self-awareness helps maintain a certain objectivity and ensures that our personal biases do not unduly influence the research process and the interpretations of our recollections. As a result, the structure and content emerged in the order in which it is presented here.
Ethics Stance
The present duoethnography adheres to basic research ethics principles, including the authors’ commitment to authenticity, truth, mutual respect, and ongoing reflections on rigor in our process. In addition, we are bound by our professional ethics standards as a CVRT (Martiniello) and a CLVT (Wittich), as laid out by the Academy for Certification of Vision Rehabilitation & Education Professionals (2023). The present study was, however, not submitted for peer review or approval by an institutional review board, given that such approval was not required because the data sources are the two co-authors who are reflecting on their own lived experiences.
Dialogue on Disability and Allyship within a Vision Science Doctoral Program
Social Location
Duoethnographies usually provide a brief introduction to each of the authors. We provide this context in the tradition of social location. With roots in sociology (Anthias, 2013), this concept describes an individual’s place across a variety of different social hierarchies, such as gender, race, social class, age, ability, religion, sexual orientation, and geographic location. The optional declaration of these variables highlights the individuality of each author, while also declaring their inherent biases. Though situated from different perspectives, we recognize that we have brought – and have encountered - different forms of power, privilege and bias through the shared experience of completing a doctoral program. While the scenarios we describe in this manuscript reflect many common experiences shared by others who are blind, it is also essential to underscore the importance of avoiding over-generalizations. It is our hope that the testimonies described in this manuscript will add to the diverse voices of blind and other disabled scholars and their non-disabled allies to advance further dialogue, reflection and inclusivity.
Natalie
I am a white, 38-year-old heterosexual cisgender female from an Italian-Canadian family where I am also a first-generation university graduate. I am the youngest of my siblings and the only one with a visual impairment. Until adolescence, I still had some functional vision for very near print reading tasks. I lost most of my remaining sight over time and used a white cane for orientation and mobility until I transitioned to a guide dog at age 18. My parents knew no other blind people, but despite this lack of reference, ignored any preconceived notions about blindness and made decisions based on who I showed myself to be when given an equitable opportunity to succeed. I attended a mainstream school alongside my siblings and began learning and using non-visual techniques (such as braille and text-to-speech software) at the start of my education, in a Canadian province where assistive devices are fully funded by the government. This meant that once I did lose the remainder of my sight, I was able to continue functioning as I did before. These formative experiences encapsulate the social model of disability (Shakespeare, 2013) and greatly informed my own views on impairment versus disability as a blindness rehabilitation practitioner and researcher. I came into the rehabilitation field with an understanding that what often disables blind individuals is not impairment (the inability to see), but the attitudes and opportunities that are (or are not) available to them. In addition to this lived experience, I am trained as a Certified Vision Impairment Rehabilitation Therapist (CVRT), where I have provided braille and assistive technology training to blind individuals and have remained heavily involved in public education and advocacy related to braille literacy and inclusive learning. I have encountered many of the same barriers experienced by other blind trainees, while also benefiting from certain forms of capital (education, assistive devices, and a strong blind peer support system) that are not always available to others.
Walter
I am a white 54-year-old gay cisgender man and a first-generation university graduate without physical disabilities but have an anxiety disorder. I come from an upper middle-class German family and am a first-generation immigrant living in Canada. I am a tenured faculty member at the School of Optometry, Université de Montréal. Most of my academic time is spent conducting research related to the (re)habilitation of persons with low vision, blindness and deafblindness. I have to date supervised seven post-doctoral fellows (all sighted), eight PhD students (two blind), seven research Masters (all sighted) and 36 clinical master’s students (two with low vision). Natalie was my second PhD student, and my first blind graduate student. I have no experience with braille, but as a Certified Low Vision Therapist (CLVT), am trained in the rehabilitation of persons with low vision.
Equity: An Essential Nuance
Natalie
It was the first semester of my doctoral program, and I needed to take a statistics class. I was ready and determined, but beneath the surface, also recognized the deep-rooted anxiety that accompanied any course of this nature, one that is familiar to many blind students. My earliest memory of math was on a day when the other students had been learning about geometry. Assuming that this content would be too visual for me to understand, I had instead been given a collection of raised drawings to colour in while the other students worked. I was often left feeling lost when the math teacher would write on the board, because I was unable to visually follow. Though I had an educational assistant whose job it was to rewrite the content on the board at my desk, for me to follow with the use of a video magnifier, it was inevitably too quick for me to grasp, and there were many times when I did not receive braille materials on time. My poor performance in math, despite my high levels of achievement in every other course, was unconsciously assumed to be due to my blindness. ‘For a blind student, she is doing well’ was a phrase I heard in relation to math. And so, I unconsciously grew up thinking that I was simply ‘bad at math’ a feeling commonly shared by many blind students for these same reasons. My teachers were dedicated and supportive, but at that time, there was little discussion about universal instructional approaches, and math was taught the way it always had been: inherently visual in nature. This was the history that walked into the room with me on the day I discussed taking a statistics course with you, my supervisor.
Walter
The PhD program in Vision Science requires students to take a mandatory graduate-level statistics course. Generally, this means that students take a quantitative course that covers topics related to parametric and non-parametric techniques, effect size estimation and different approaches to correlation and regression. I have taught this course myself, and I am a great proponent that every graduate student should not only be able to understand and explain their own statistical analyses, but also be able to execute them on their own. I, at first, had no idea of your past math experiences. When we initially met to talk about statistics, I mentioned that we have a 13-volume stats book (from a different course) that was already brailled for a past student. I gave that to you as soon as possible, because the basics of statistics have not changed in a while. When I accepted you as a PhD student, I was initially unsure how this statistics requirement would unfold because I was vaguely aware that screen reader software such as JAWS (Freedom Scientific, 2023) is not always compatible with statistical analysis software such as JASP (JASP Team, 2022). Never mind trying to find out how to make statistical graphs accessible (Ferres et al., 2007). However, I view this as an important right of passage in the PhD program, and never thought about this differently for you.
Natalie
When I began discussing statistics with you, I unconsciously assumed that I would have to explain that my difficulties in math were not because I was blind – or because blind people cannot do math - but because of how math is typically taught. I needed a professor who would be flexible enough to think outside the box. And I needed braille. I characterize that first conversation with you as a defining moment, because reflecting on it now, we were united in our views. You never considered that I should avoid statistics because it would be too difficult – you knew that it would be essential to the research I was planning to undertake. It was never a question of “should I?” or “can I?” It was immediately a question of “how can we make this work, and how can I support you in this moment?” And you recognized me as the expert in what I would need. These elements – that you did not begin from a place of assuming I could not, and that you viewed me as the expert in my own learning – became an invaluable source of allyship when I inevitably needed to advocate for a braille version of the course materials.
Walter
The easy way out would have been to simply design a PhD project with you that relies on qualitative methods, thereby avoiding the issue altogether. The problem with that approach was that I already anticipated that your research questions would require a mixed-methods approach (both qualitative and quantitative). And of course, it would also mean that I would change (lower?) my expectations as a supervisor based solely on the fact that you are blind. I was convinced that I am not going to do you a favour by keeping the world of quantitative analysis from you because as a future academic and a potential eventual supervisor yourself, this is a skill you would need. Therefore, I shared these reflections with you and the commitment that we would find a way to make this possible.
Natalie
Of course, this is also how I felt, and it was a relief to me that I was embarking on this journey with a supervisor who was on the same page. The advocacy work would not have to start with my supervisor. When people think of statistics, accessibility comes up as the most obvious barrier, but the experience that unfolded was in many ways also one of equity. To succeed in stats, I knew I would need braille. Unlike auditory information, a full page of braille would provide me with the spatial layout I would need to understand equations, graphs and figures. In much the same way, most sighted students would never be asked to complete a math exam entirely through aural means, yet this is too often taken for granted for blind students, especially if that content is already available in another accessible format, such as text-to-speech. When I initially requested the textbook in braille through the disability student office at the external university, I was initially met with a lot of push back. “Do you really need it in braille?” and “…because the last blind student we had (about ten years ago) used text-to-speech”. These comments were not surprising to me after many years of having to self-advocate and navigate biases that often lumped all blind students together as one homogeneous population. I appreciated that you did not intervene or speak on my behalf. Instead, you listened and asked how you could help and whether I wanted you to get involved. Ultimately, I did receive the information in braille and not only succeeded, but thrived. I had to drop the course the first time because I did not receive those materials in time. In an ironic way, you experienced this inequity not only as a bystander but also as a colleague – because my inability to get what I would need to succeed would affect you as my doctoral supervisor. My level of success would also be a reflection on you. I think this was also your first direct experience with the notion that accessible is not necessarily equitable – so much of the disability labour that blind trainees must navigate involves having to justify why you need a specific accessible format, particularly when that format is braille, with little understanding that not all accessible formats are appropriate for all subjects and all people.
Accessibility: More than an Individual ‘Issue’
Natalie
I expected that I would have to work around inaccessible journal articles – familiar territory. Ironically though, we both assumed that the most challenging aspect of my research would be the data collection phase, where I planned to assess participants on a variety of tactile, motor and cognitive abilities. Not all of these tests are accessible to blind researchers, but this issue was ultimately not a big one because we found ways to circumvent a majority of these barriers. When I could not develop adaptive methods for conducting the assessments myself, we secured funding to hire sighted research assistants. This is no different than what many other researchers do when they hire lab assistants to handle certain aspects of a project that they oversee. These sighted assistants may have administered the tests, but I was overseeing, directing and analysing the entire process.
Walter
Yes, when we started planning the consecutive chapters of your dissertation, we both assumed that the literature review would potentially be the easiest part of your PhD. After all, that was ‘only’ about accessing text that was already available in electronic format. So, I suggested that we would make this a more formal and systematic chapter, in the format of a scoping review (Arksey & O’Malley, 2005). Ironically, this phase of research ended up introducing the greatest accessibility barriers.
Natalie
The greatest challenge arose due to the nature of information we wanted to analyse from these articles. We needed to gather information about tactile, motor, and cognitive measures from prior studies, but these results are typically presented in the form of figures and graphs – formats that are inherently visual. Journal publications rarely, if ever, require authors to include written descriptions of visual images into their manuscripts. Ironically, if they did, this disabling barrier would disappear. Because this was the essential aspect of each article that I needed to extract, the scoping review took much longer than it should have. While those parts in my control (analysis and writing) progressed at a normal pace, dealing with the inaccessible content – large, complex and long strings of data available to readers only in visual graphs and figures – was a whole other story.
Walter
I was unaware at the time that our office for students with disabilities had a variety of flexible options to support your needs. In this case, I was positively surprised that the university would provide you with access to a sighted assistant without cost to you. They were responsive to the specifications that you needed someone who can function at the graduate level and can conduct literature searches for you in databases that are inaccessible to you.
Natalie
The fact that funding for sighted assistants was available was a huge facilitator, but I remember us also talking about how uncommon this is. So many granting agencies do not allocate additional funding for accessibility related costs, and there are many university disability offices that do not provide this assistance. The accessibility challenges extent not only to journal articles themselves, but also many journal platforms, library websites, and importantly, the online system I needed to use to submit each of my studies for ethical approval. I remember reaching out to the IT contact to let them know that the system was not accessible, especially because we had learned that it was in the process of being updated. I wanted to ensure accessibility standards would not be forgotten. They replied, requesting that I provide a list of the inaccessible features that needed to be addressed. Too often, blind and disabled scholars are asked, even if well-intentioned, to not only plan and anticipate accessibility barriers, but to do the work of fixing them. There are trained accessibility experts, and it is essential that this remains a task that is compensated for those who specialize in this work. Given our different forms of status, there were many times when I knew you were in a better position to raise accessibility barriers in allyship with me, to amplify the message and initiate this change.
Walter
This experience was also the beginning of a new perspective on allyship for me. As a tenured professor, I have the luxury of being protected in case I may rub someone the wrong way (within reason, of course). I realized that I found myself in situations, with or without you present, where I could speak up on behalf of accessibility needs for the visually impaired – for you in particular, but also in a general sense, for future students, blind faculty members and others with similar needs. We discussed repeatedly how I am not taking a risk by speaking up about a need to make something accessible.
Since then, I have searched for occasions on a larger scale where I specifically point out weaknesses or missed opportunities to make documents or web sites accessible to screen-reader or magnification software. My identity as an ally continues to grow as I become aware of such accessibility barriers. I specifically recall conversations with representatives of a local organization, who (quite proactively) meant well when they asked you to provide them with a breakdown of your accessibility needs. I then stepped in, explaining that, in a larger centre like Montreal, we have centres that specialize in accessibility services for persons with visual impairments. Therefore, instead of placing the burden of consultation on the student with a disability, I proposed that the organization should consult with the professionals who are trained (and paid!) to make accessibility recommendations. As a result of this ally role, the university eventually invited me to join an accessibility committee; after exploring whether this committee was made up of individuals with lived experience (it only contained one person using a wheelchair), I suggested to include you instead.
Natalie
There were many days when everything went well, and other times when it seemed that one accessibility barrier followed another. It was during one of these latter experiences, when you asked whether we should contact a specific software company to let them know about the inaccessibility of their research platform (something I have done in other instances). I told you that, although perhaps at some point in future I would, I had no intention to do so now. I have learned that it is essential to ‘pick your battles’. Since then, you have mentioned that this lesson has really stuck with you.
Walter
I often remind myself of this conversation, especially when I find myself in administrative meetings. Picking my battles has become one of my main coping mechanisms when dealing with variables that trigger my anxiety – a strategy that can work under many conditions.
Diversity: The Power of Representation
Natalie
We were fortunate to have secured quite a few fellowships and grants, providing me with many opportunities to attend – and present – at a variety of local and international conferences. For blind scholars, these outputs stand as further examples of our expertise for future employers (though I say this while also acknowledging the problematic tendency in academia to base value on productivity alone). Beyond this though, these opportunities served as powerful moments of allyship where you experienced, alongside me, the reaction of others in public spaces, how I navigated this, and how you negotiated your own feelings in these instances. For me, I am quite used to navigating all kinds of public interactions. As a blind person who also has a facial difference, I have been asked every question imaginable. There were days when I would meet you on campus and share an anecdote with you. Something like, “oh, today, when I was standing at the metro, someone tried to give me some money”. And I would laugh. These stories are of course deeply problematic and reveal the significant amount of work we need to do to challenge deeply rooted misconceptions and to elevate diversity. The more often we see blind people in diverse positions of leadership, the more we can combat this stigma. Yet, I, like many others with disabilities, find different ways to cope with these experiences. For me, one is humour and another is advocacy. I often use these stories to educate others about the impact of misconceptions. And, at a personal level, some of these interactions are so preposterous that I can only laugh when I think back on them. Interestingly, over time, I think you felt comfortable to engage in this form of humour as well.
Walter
Initially, I did not anticipate that I would be at the receiving end of reactions from our surroundings by being associated with you. Many times, while being your sighted guide, I would observe people’s facial responses when entering a room with you (at times accompanied by your guide dog). We would immediately draw attention for being different. These reactions varied widely from surprise to curiosity to skepticism. Over time, I developed a sense of pride for being the one who has the privilege to walk in the room with you, because for us this affiliation represented many different variables, including our professional successes and our personal friendship. We continue to find creative ways to play the “blind card” when necessary, because we simply decided to make our difference work for us as an advantage within a system that is often designed for homogeneity instead of diversity.
Natalie
The ‘blind card’ was a term we reclaimed to mean something very different than how it is traditionally understood. It is typically used to suggest that a person is “taking advantage” or getting some kind of “extra perk” based on who they are, a deeply ableist, problematic and short-sighted notion. We viewed my identity as a blind person as a strength alongside my other skillsets as a researcher. My experience as a blind person –is one reason I am creative, persistent, a good problem-solver and can think on my feet. If I could use this to get into the room or a seat at the table, I did. Sometimes, those invitations are meaningful but still too often they are tokenised. My blindness is only one aspect of a much broader and more nuanced identity. Once I am in the room, this is where perceptions change. I get to rewrite the narrative.
Inclusion: Beyond Tokenism
Natalie
I was often the only visibly blind person at a conference. This sometimes led to unique interactions. For example, sometimes people would come to my poster without saying a word, and it was not always easy for me to know whether anyone was there. We talked about different strategies to navigate these interactions. Other times, people would assume you or another lab member with me was a sighted assistant rather than a colleague. These experiences, which move beyond accessibility alone, need to be elevated and addressed to foster meaningful inclusion and progress. These collective experiences led to the joint creation of INOVA, alongside Drs. Bonnie Swenor and Mahadeo Sukhai, both researchers with low vision. Your role as sighted ally was essential to the early establishment of INOVA. We need others to understand and amplify why accessibility and inclusion ultimately impacts and benefits everyone, especially because so much of this comes back to those deeply-rooted misconceptions. Diversity strengthens research.
Walter
I still feel privileged that you and the INOVA team asked me to represent allyship on the organizing committee. Defining my role as an ally within INOVA is an ongoing process. There are situations where I have the opportunity to amplify the message of persons with sensory disabilities because of my political or administrative roles, locally, nationally and internationally. Many of these doors are open to me because of my topic expertise, but I need to exercise a bit of finesse to accomplish this allyship because I do not speak from lived experience. On numerous occasions my role has been to ensure the inclusion of persons like you to be able to have the necessary representation.
Natalie
These conference experiences led to a multilingual conference accessibility toolkit that we developed in partnership with other blind and sighted colleagues. With a focus on visual impairment, it highlights recommendations for both conference organizers and speakers to increase conference accessibility and inclusion. As a first step to future efforts in this area, this toolkit arose from our collective discussions. I am inspired by the blind and sighted allies we have met throughout this journey who are engaged in this important work. It is my hope that these stories, in conjunction with the many diverse experiences of others, will encourage thoughtful self-reflection but also a sense of deep empowerment and collective agency. Perceptions and actions are things we have the power to change. Allyship is the recognition that this change is a shared responsibility and opportunity.
Next Directions
The purpose of this duoethnography was to explore equity, diversity, inclusion, and accessibility in the context of completing a PhD in Vision Science, through a dialogue between a blind doctoral trainee (now PhD), and a sighted supervisor. While these scenarios are part of a much broader and more nuanced experience, our hope is that these examples will help to advance dialogue on accessibility, inclusivity and allyship in higher education, and highlight some of the tangible actions that are needed to foster sustainable inclusion.
From a universal design perspective, diversity and difference are understood as not merely “special needs” but core aspects of the human experience. For instance, providing an electronic copy of the course syllabus will benefit blind students, but will also address the invisible or unspoken needs of others, including students with learning disabilities, second language learners, and those who may require mobile access (Fichten et al., 2009). Proponents of universal design accentuate the importance of including accessibility and usability as non-negotiable key indicators when selecting learning management systems at the procurement stage (Rose & Meyer, 2002). These examples illustrate the ways in which disabling barriers can be addressed by looking beyond individual students to the structural and systemic changes needed to foster sustainable inclusion.
Beyond this notion, however, the narratives shared here also draw an important distinction between access and equity. As illustrated through the story of math, having an accessible version of course content does not necessarily mean that this format is the best one for a given learner to succeed, based both upon preference and the nature of the content. For many blind students and researchers, braille and tactile graphics play a central role in the spectrum of access methods that are used and represent a form of physical interaction with text that is equivalent to print (Martiniello et al., 2022). Having access to an accessible electronic version of a text will facilitate braille transcription, but time spent questioning the value of braille when it is raised will significantly delay this process. This foregrounds the importance of lived experience and, above all else, believing students when they express what they need to succeed. Measurement processes that define inclusion based solely on accessibility (the presence of accessible formats) may overlook the extent to which that format is meeting actual needs.
The concept of disability labour also reoccurs across the narratives we share, and indeed, is one that has been raised by many disabled scholars (Brown & Leigh, 2018). On one hand, this refers to the additional work (not required of non-disabled trainees) that is needed to negotiate inaccessible processes (e.g., the remediation of articles when journal platforms do not require authors to embed accessibility). On the other hand, this also references the often-unconscious expectation that disabled scholars will engage in work that falls outside the scope of their primary role (to build a research career), such as when asked to assess the accessibility of a platform. While soliciting lived experience and consultation on these matters is a vital initial step, a form of allyship among sighted colleagues is found in the recognition that treating accessibility as unpaid and uncompensated labour unconsciously reinforces this work as less essential than remunerated tasks. When sighted colleagues communicate problems of accessibility and remediation to those responsible for procurement and technical support, they reinforce that accessibility is important to everyone. As Walter describes, this is especially powerful when such messages are amplified by those who hold positions of power, such as tenure. Accessibility must thus be understood as a concept that ultimately benefits everyone, because time spent on trying to negotiate these barriers may limit the extent to which a colleague can use their broader skillsets to strengthen a research project.
While the concept of allyship is not new (Wolbring & Lillywhite, 2023), recent work has highlighted that engaging in effective allyship requires nuanced and thoughtful reflection (Abes & Zahneis, 2020). A core tenant of effective disability allyship lies within meaningful efforts to reflect upon the biases we all hold that may influence our perceptions, actions and responses to disability inclusion (Feldner et al., 2022). Central to this is the concept of Tokenism or performative allyship, referring to superficial or surface level actions that do not meaningfully contribute to increased disability inclusion. This can occur, for instance, when researchers with disabilities are invited as collaborators solely to address disability or accessibility aspects of a project, rather than to contribute their broader expertise. As illustrated throughout our narratives, allyship does not equate to always knowing or having all the answers, but in the willingness to listen and learn.
We echo the reflections of Abes and Zahneis (2020) that we believe there is much to be learned for current and future students and colleagues from the experiences described here. While some aspects of the experience of PhD while blind are unique to visual impairment (e.g., access to braille), the larger and potentially more profound barriers are likely shared across other forms of disability. The U.S. Department of Education Institute of Education Sciences (2018) indicates that 19.4% of undergraduate students reported a disability; however, this number dropped to 11.9% after completion of a bachelor’s degree. One of the first barriers that a blind student may encounter is the perception of a prospective supervisor, positioning the supervisor as an essential first ally. While it is true that creativity, and an openness to approaches, processes and time, are important components to success, we call upon all scholars to reflect upon disability as a social construct as they develop a notion of allyship. Through self-reflection on the way we think about, and by extension, respond to, disability in academia, we can start to dismantle the prohibiting policies and practices and reconstruct them to enable all disabled scholars to advance meaningfully.
Online Video Appendices
Link to Dr. Martiniello’s graduation ceremony video crossing stage with her guide dog Gaeta and her PhD supervisor Dr. Wittich as sighted guide https://www.youtube.com/shorts/BUOZwQLSRY4
Link to the CRIR promo video https://www.youtube.com/watch?v=0EDek-DljT4&t=2s
Footnotes
Acknowledgements
We would like to thank Chantal Robillard, PhD and Melissa Park, PhD for their generous methodological feedback on the initial draft on the manuscript.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
This study did not receive specific funding; however, Martiniello received PhD fellowships from the Fonds de recherche du Québec - Santé (#23305) and Mitacs Accelerate (IT12662) and was awarded a Ross C. Purse Fellowship from the Canadian National Institute for the Blind. She now holds a postdoctoral Health System Impact Fellowship from the Canadian Institutes of Health Research (#481912), supported by the Institut Nazareth et Louis-Braille du Centre intégré de santé et de services sociaux de la Montérégie-Centre. Wittich was supported by a Chercheur boursier junior 2 Career grant, provided by the Fonds de recherche du Québec - Santé (# 281454) and Centre for Interdisciplinary Research in Rehabilitation New Initiatives Grant.
