Chronically Honest: An Autoethnographic Paper on the Experiences of a Disabled Librarian

By Nikki Andersen 

In Brief

Through autoethnographic reflection and examination of theoretical literature, this article explores my experiences of disability while working in the academic library and information science (LIS) field. Most of the current literature on disability and librarianship focuses on serving students or patrons with disabilities, whereas the experiences of being a disabled library worker are less explored. The article examines the reality of working in the LIS profession with a hidden sensory and physical disability. It explores the cognitive cost of working with a visual impairment and the experiences of being hard of hearing in a service-oriented profession. This article ends with an exploration of the intersectionality between chronic pain, fatigue, and exclusionary LIS ideals. 

My story 

I am a librarian with a degenerative connective tissue condition called Stickler Syndrome. It is one part of my identity but also responsible for everything I am – a condition that has influenced every facet of my life, the decisions I make and the way I work. Stickler Syndrome is a rare degenerative condition affecting connective tissue, specifically collagen. It’s characterised by distinctive facial differences, ocular problems, hearing loss, and joint and skeletal problems. My condition affects my entire body – my senses, my mobility, and mostly my energy. I identify as both disabled and chronically ill and use these terms interchangeably. I also use both identify-first and people-first language ((Person-first language emphasises the person before the disability, for example “person who is blind.” Identity-first language puts the disability first in the description, e.g., “disabled” or “autistic.” Person-first or identify-first language are both appropriate, depending on personal preference. When in doubt, ask the person which they prefer.)) fluidly in this paper. I recognise and respect different choices regarding identity and language, whilst also believing that disability is not a bad word and that my disability is a core part of my identity and something I take pride in.

People with disabilities are the largest minority group in the world (United Nations, n.d) and ‘they’re the one group on the planet that anyone could become a part of at any given time,’ (Bell, 2018). Despite this, in Australia, only 1% of LIS jobs are filled by individuals who have disclosed as having a disability (ALIA, 2019). When I entered the LIS workforce in 2015, disability and disability-related issues were rarely spoken about or represented. This silence and invisibility meant I didn’t see myself represented in the profession, nor did I feel like I belonged. Workplace training often focused on disability awareness rather than disability acceptance, and LIS practices and research often neglected disabled voices and perspectives. 

Most of the current literature on disability in librarianship focuses on serving patrons with disabilities (O’Sullivan & Alexander, 2020; Pionke, 2017; Pontoriero & Zippo-Mazur, 2019; Kowalsky & Woodruff, 2017). The experiences of being a disabled library worker are less explored. The exclusion of disabled people in LIS research might be impacted by  the ‘tendency of researchers to prioritize and amplify those with greater institutional power and social capital over the voices of experiences of marginalised people,’ (Gibson, Bowen & Hanson, 2021). Gibson, Bowen & Hanson (2021) and Pionke (2017) found a lack of disabled voice in LIS scholarship, with the literature dominantly exploring how disabled people operated in library spaces or a rise of work focusing on assistive technology. According to Bell (2023a), it is not enough to rely on research if it ‘doesn’t recognise diverse values, perspectives and lived experiences.’ We need to understand the needs and aspirations of all members of our communities and include their voices and perspectives in decision-making processes and library services. This is because libraries serve diverse communities.

While experiences of disability in the LIS profession are not uncommon, they are rarely spoken about. To address this gap, I am using autoethnography, a form of academic storytelling that draws on and analyses my own lived experience in relation to my LIS work and the LIS profession more broadly. I ask: how does my identity interact with and influence the work I do as a librarian? This question follows the autoethnographic methodology of this paper, acknowledging the significance of my own positionality (and the need to acknowledge lived experience) in addressing this question.

To unpack this question, I must explore what it means to be disabled. Disability has many legal, medical, and socio-political definitions, but in this paper, I will not limit the discussion to any one definition of disability. I take a broad approach, including physical disabilities, chronic illnesses, mental health conditions and neurodivergence. Although there is no single definition of disability, it is important to note the different models and theories of disability and how they shape the experiences of disabled people in the LIS profession. There are five models or theories of disability that I will introduce that are relevant to my own experiences:

• The medical model of disability
• The social model of disability
• The biopsychosocial model of disability
• Critical Disability Studies (CDS)
• The social justice model of disability 

The medical model of disability focuses on individual impairments. Under this model disability is a personal problem. The onus is on the person with a disability to conform to abled and societal standards (Hollich, 2020). In contrast, the social model of disability defines disability as a social construct. For example, the problem does not lie with an individual but with society which fails to create accessible, inclusive environments (People with Disabilities Australia, n.d). The biopsychosocial model of disability views disability as a combination of the health state of an individual and their surroundings. This model accepts the provisions of the social and medical models, not independently but as interrelated (Petasis, 2019). Critical Disability Studies take the social model of disability one step further, by highlighting that disability is integral to an individual’s identity and that disabled experiences are important (Hollich, 2020). Additionally, according to the social justice model of disability  ‘privilege and oppression…[are] major influences in shaping how disability is viewed and experienced,’ (Evans, 2017, p. 72). According to Moeller (2019), the social justice model aims to redefine ‘normal’ and enable positive disabled identities. Clare (2015, p. 107) states that without disability pride ‘disabled people are much more likely to accept unquestioningly the daily material conditions of ableism. … Without pride, individual and collective resistance to oppression becomes nearly impossible.’ A combination of the social model of disability, the biopsychosocial model, Critical Disability Studies, and the social justice model offers ways to critique current barriers and enhance disability inclusion in the LIS profession. 

The autoethnographic work in this paper is grounded in the social, biopsychosocial, critical, and social justice models of disability. Although I sometimes relate to the social model of disability, in that society disables me, I also have the view that I am disabled because my body is disabling me. There is a liminality between the way society disabled me and the limitations of my own disability. My disability informs the way I perceive and interact with the world and influences the way society interacts with me. However, it is vital to note that my experiences come with the privilege of whiteness and cisgenderness. I am a cisgender, white disabled woman. I have not experienced the types of biases that affect those of marginalised backgrounds related to race, cultural background, and sexual orientation within the LIS profession.

Since my disability is dominantly hidden ((Hidden disabilities may not be visible outside of an individual’s body, but can have significant impacts on the individual)) I can pass as able-bodied. Hollich (2020, p. 98) states ‘the idea of passing…is appealing in many contexts. If I can convince other people that I am not disabled, then I can receive all the attendant privileges of being abled without any stigma.’ In some contexts, I pass intentionally because I worry about the consequences of disclosing my disability. Will disclosure affect my career? Will I no longer be considered for opportunities? Will my work be overshadowed by assumptions and stigma? I ask these questions a lot in my work as a librarian. Todoroff and Lewis (1992) acknowledge that passing is about fear of discrimination and fear of other people’s stigma. Passing sometimes feels safe. However, it also feels untruthful, as I am someone who believes in bringing my whole self to work, which includes my experiences with disability. In 2018 I publicly disclosed my disability at a state-wide presentation. Ever since then, I have been open and honest about my disability in professional contexts both nationally and internationally. When I reflect on why I’m chronically honest about my disability and why I’m a passionate disability advocate, it’s because the idea of the LIS profession and its practices staying the same scares me. Although disability disclosure is a type of risk management decision (Wood, 2017), I am driven by the desire for positive change and for others not to experience the barriers I have in the LIS profession.

My disability is hidden, dynamic, sensory, and physical. Deafness, vision loss, chronic pain and chronic fatigue have all impacted my life and work, and these all come with a cognitive cost. I define cognitive cost as a significant mental effort or exertion often from doing activities that people without a disability would not think about or do effortlessly (e.g. walking, seeing). Non-disabled people may have the privilege of bodies that work in the ways that they expect, free from regular pain, limitations, and monumental effort. For example, it is such a shock to me that most people don’t experience daily pain. It is a shock to me that people wake up energised. It is a shock to me that people don’t have to strain to see or hear. Inevitably, there is an invisible cognitive cost in my work as a librarian. I will explore this cost through my experience with vision loss, hearing impairment, chronic pain, and chronic fatigue. 

Vision Loss and Library Work: The Cognitive Cost 

I was born severely myopic and have never known anything different. As such, my experience in the workforce has always been impacted by vision loss. In 2006, I had a retinal detachment (a common comorbidity of Stickler Syndrome) and since then have consequently experienced varying degrees of vision loss and blindness.

Visual impairments dominated the scholarship around disabilities and libraries. Much of the literature focused on library services or guidelines for serving blind or visually impaired patrons (Bayat Bodaghi, Cheong & Ngah, 2019; Bayat Bodaghi, Cheong & Ngah, 2016), the accessibility of library spaces and technologies, including assistive technology (Alabi & Mutula, 2020; Gibson, Bowen & Hanson, 2021; Yoon et al, 2016; Harpur & Suzor, 2014) and information provision and copyright considerations such as the Marrakesh Treaty (Were, Otike & Bosire, 2022; Ferri & Rossello, 2023). I found no literature about the experiences of visually impaired library workers. The absentce voice of visually impaired library workers highlights the lack of disability diversity within the profession and makes me feel out of place. Sometimes I feel as though my difference precedes me professionally, and this consequently leaves me with the task of overcoming – overcoming people’s biases and misunderstandings about blindness. I feel that others may see my disability through a deficit lens; seeing what I can’t do, instead of what I can do. Inevitably, the act of overcoming other people’s unconscious biases is a heavy cognitive cost for me. Additionally, when I reflect on the absence of visually-impaired librarians’ experiences in the LIS profession, I think of the quote by Marian Wright Edelman – ‘you can’t be what you can’t see.’ The fact that I rarely see other visually impaired library workers represented makes me question my own place in the LIS profession and contributes to feelings of otherness.

Besides the lack of representation, the constant need to self-advocate, and the challenges of managing cognitive overload – the physical demands of working in a space not designed for people ‘like me’ carries a significant cognitive, emotional, and physical cost. In fact, even the act of walking carries a higher cognitive cost as a visually impaired person (Pigeon et al., 2019). This cognitive overload is exacerbated by constant accessibility barriers. The irony of working in a sector dedicated to literacy, information, and knowledge – where less than 7% of published works are accessible – doesn’t escape me (Ferri & Rossello, 2023). Beyond the technical barriers, there are also exclusive norms in the LIS professionals that have been major barriers for me in my career. For example, I have been excluded from opportunities to apply for public library positions and some academic library roles because many libraries mandate the provision of a driver’s license, even when it is not an inherent requirement of the job. Muir, Thompson & Qayyum (2020, p.475) note that the wording and mandatory requirements within job advertisements ‘reflect who is invited to apply for the position.’ These human-made employment practices exclude people like me from library work and are one of the many barriers I must overcome in my career journey. My sensory disability is not limited to my vision but also my hearing as I experience both conductive and neurosensorial hearing loss.

Deafness and Library Work: Lipreading, Listening Fatigue and Deaf Anxiety

Scholarship about hearing loss and deafness in libraries primarily focuses on serving D/deaf or hard of hearing patrons ((The ‘uppercase D’ Deaf is used to describe people who identify as culturally Deaf and are actively engaged with the Deaf community. Deaf with a capital D indicates a cultural identity and usually a shared sign language.  The ‘lowercase d’ deaf simply refers to the physical condition of having hearing loss. People who identify as deaf with a lowercase ‘d’ don’t always have a strong connection to the Deaf community. Whereas ‘hard of hearing’ refers to someone with mild to moderate hearing loss.)) (Day, 2004; Saar & Arthur-Okor, 2013; Bushman, 2018). The literature identified the need to create more deaf awareness for librarians, especially around communication options (Saar & Arthur-Okor, 2013; Forrest, 1997). Cirasella et al. (2021) identified that there are pervasive stereotypes about hearing loss. The dominant narrative in society is that hearing loss is associated with aging, which can lead to disbelief when younger people disclose that they are hard of hearing (Cirasella et al., 2021). Furthermore, some people mistake hearing loss for a lack of intelligence, inattentiveness, apathy, and rudeness (Cirasella et al., 2021). Deafness is not the absence of sound. When I say, “sorry, I didn’t hear you,” what I often mean is “I didn’t understand you.” I hear the sounds that come out of your mouth, but my brain cannot always rearrange the sounds to form meaning.

I started wearing hearing aids when I was a teenager. It is a myth that assistive technology like hearing aids and cochlear implants magically makes D/deaf and hard of hearing people hear. The truth is they merely amplify sound. Your brain must still do the grunt work to comprehend and translate the sound into meaning. My hearing aids allow me to ‘hear’ the noise louder, but my brain does not always make it all out. Since librarianship is a service-oriented profession there are challenges to providing services as a hard of hearing librarian. Cirasella et al. (2021) identified difficulties for hard of hearing librarians in meetings, at the reference desk, in open offices and in other noisy environments. Cheney (2021) also highlights the isolating experiences of hard of hearing librarians who are excluded from office banter due to the fact social conversations are spoken in quieter tones and whispers. 

Although I wear hearing aids, most of my listening is done with my eyes. To me, listening is a visual act, not an auditory one. I acquire meaning from facial expressions, the slightest movements, and body language. I am a lip-reading librarian, who picks up on visual cues. Lipreading is not the art of reading the shape of people’s lips. Rather, it’s about getting every odd word right and filling in the blanks; guessing the rest of the words through context, tone, and facial expression, and then stringing it all together before the person you are talking to thinks you’re rude. It is tiring. This kind of fatigue is called listening fatigue and is common for D/deaf and hard of hearing people. Ian Noon explains what listening fatigue is: 

“It’s about the energy involved in lip-reading and being attentive all day long. Processing and constructing meaning out of half-heard words and sentences. Making guesses and figuring out context. And then thinking of something intelligent to say in response to an invariably random question. It’s like doing jigsaws, Sudoku and Scrabble all at the same time.” (Hear For You, n.d.). 

In addition to listening fatigue, I also experience Deaf anxiety. Deaf anxiety is when someone is trying to avoid attracting attention or criticism for possibly not noticing an environmental sound. McWilliams (2017) states ‘one major difference between hearing people and some deaf and hard-of-hearing people and people with auditory processing disorder is the privilege aspect. The ability to relax knowing that if anything occurs in your environment, you’ll be able to hear it. I do not have the ability to relax. I feel as though I’m always on edge.’ Some things I get Deaf anxiety over include:

• Not being able to hear a question or comment.
• Not being able to hear the direction of a voice calling me in open spaces such as open offices.
• Not being positioned correctly in a room, so that my good ear has more of a chance to hear.
• Not being able to lip read because someone is covering their mouth, or they are wearing a mask.
• Being perceived as rude or careless if I miss something. 

Every task and situation requires thought and strategy. For example, if I attend a workshop, choosing the right seat is crucial. I must think about positioning myself so that I can not only best hear the speaker, but also be able to keep up with discussions that move around the room. This is a daily occurrence, in work and life.  

There are many strategies that can be employed when communicating with D/deaf or hard of hearing people like me. It helps when people face me when they’re talking so that I am included in the conversation and I have the opportunity to lip-read.  As mentioned above, I dominantly rely on lipreading as do many hard of hearing individuals. If people are wearing a mask, I appreciate it when they use visual cues and their hands to convey meaning. I also prefer people to have their cameras on in virtual meetings when they are speaking. If I can’t see the face of the speaker my listening fatigue will drastically amplify and impact the quality and productivity of my day.

There is also a stereotype that speaking louder helps D/deaf or hard of hearing people. This is a myth. Shouting makes words less clear, so I encourage people to speak normally. If meaning is getting lost, try reframing it in a different way rather than repeating the same words over and over. In society, the onus is always on the disabled person to conform to abled communication methods. Communication is a two-way street. However, for me, a lot of the time, it feels like a one-way street with no through road. The 2021 Australian census revealed that 16,000 Australians use Auslan to communicate (Australian Bureau of Statistics, 2021). Auslan, or Australian sign language, is its own language with its own grammatical structure, different from spoken or written English. McQuigg (2003) questions how many can use their first and only language in libraries. Further, they question not only the disability exclusion and ableism the Deaf community faces but also how sign language is a linguistic minority in Australian libraries (McQuigg, 2003). Inclusion is a core value of the LIS profession (ALIA, 2018) but if we want to put inclusion into action, we need to stop expecting D/deaf and hard of hearing people to conform to abled communication methods and make sense of half-heard sentences and lip-reading. LIS workers need to reflect on their own communication strategies and learn basic sign language.

Additionally, D/deaf and hard of hearing library workers have an important role to play in the LIS profession. Even though I’m not fluent in Auslan, I remember being the only library staff member who was able to communicate with a Deaf patron due to my ability to lipread and sign the basics. As such, there are strengths to hiring hard of hearing library workers to create better, more accessible environments and services for the D/deaf and hard of hearing community. When employing hard of hearing staff, libraries need to implement adjustments for these staff to thrive. This includes letting hard of hearing staff have their own offices (or the quietest part of an open office), so they don’t experience listening fatigue burnout and continuous Deaf anxiety. Also, always allow them to pick the seat in a room and designate a notetaker in meetings (or enable closed captions in a virtual meeting).

To me, language is more than speech, communication is more than words, and hearing does not equate to understanding. Deafness is a culture, not merely a disability. It’s a culture that deserves to be celebrated. 

Chronic Pain, Chronic Fatigue and Exclusionary LIS Ideals

Another unspoken part of my life is chronic pain and chronic fatigue. ((characterised by extreme fatigue, sleep abnormalities, pain and other symptoms that are made worse by exertion)) Seventy-five percent of individuals with Stickler Syndrome will have osteoarthritis before 30 years of age with severe manifestation in chronic back and hip pain, with functional impairments (Couchouron & Masson, 2011; Snead, M & Poulson; 2020). My physical disability is a little hard to explain; it’s more than just “a bad back.”  For me, Stickler Syndrome has caused scoliosis, Syringomyelia and multi-level spinal degeneration, all of which cause constant chronic pain, mobility problems (i.e., walking, abnormal inflexibility and hypermobility), and neuropathic sensations (e.g. pins and needles) in my legs and feet. Although my condition is rare, a study by Ebrahimi, Rojhani-Shirazi and Irvanian (2020) found a prevalence of musculoskeletal pain and burnout among academic librarians. 

The narratives around professionalism, vocational awe and resilience in libraries make it even harder to work with conditions that cause chronic pain or fatigue. Vocational awe ‘refers to the set of ideas, values, and assumptions librarians have about themselves and the profession that results in beliefs that libraries as institutions are inherently good and sacred, and therefore beyond critique,’ (Ettarh, 2018). Vocational awe places the onus on individuals who cannot live up to the flawed ideals represented by the LIS profession (Moeller, 2019). Moeller (2019) notes that vocational awe is an ableist notion that excludes workers with disabilities. Furthermore, Drabinski (2016) notes that professionalism produces inequities in the LIS profession. Exclusionary ideals like professionalism, vocational awe, and resilience are ‘based upon unacknowledged expectations of normative bodies and minds and thus reinforce this process of displacing those who do not represent the “ideal” professional’ (Moeller, 2019, p. 461). 

The ideas around professionalism and vocational awe have glorified resilience as an expectation in the LIS profession. Although becoming more resilient is often encouraged in workplaces, it can be harmful to those ‘already trying to survive expectations that don’t fit their own reality’ or ‘are experiencing systematic oppression and marginalization,’ (Moeller, 2019, p. 460). Bell (2023b) notes that resilience is relational, and asks ‘to what extent does the concept of resilience obscure that a system wasn’t designed for someone? Resilience might be seen as admirable for an individual, but what of any injustice or structural failures that surround it?’ Resilience and vocational awe in the LIS profession contribute to the phenomenon of ‘presenteeism,’ where employees continue to show up at work in pain (Simms, 2019) or they don’t ask for accommodations ((According to the U.S Department of Labor a job accommodation is an adjustment to a job or work environment that makes it possible for an individual with a disability to perform their job duties. Accommodations may include specialized equipment, modifications to the work environment or adjustments to work schedules or responsibilities)) for fears of ‘stereotyping, stigma, miscommunication, ableism, and misunderstanding’ (Pionke, 2019, p. 427). These attitudes are significant barriers to seeking out the accommodations necessary to help alleviate discomfort at work. 

In addition, these exclusionary ideals fail to recognise the dynamic nature of some disabilities. An individual who identifies as being dynamically disabled is ‘able to perform tasks or do activities, for example, in a day, more than once a day, or as sporadically or as often as they can, but the individual may not be able to complete those same tasks or do them at all in the next moment or the next day or week’ (Sarmento, n.d). For example, most days I can put my socks on, but there have been days where I haven’t been able to put my socks on because of the pain and stiffness in my spine and joints. This is an example of a dynamic disability and it’s not always acknowledged in the workplace, particularly when it comes to work performance and productivity.  Chronic pain and dynamic disabilities are an unspoken reality for many disabled people.  

Burnout is another undeniable issue in the LIS profession (Wood et al., 2020; McCormack, 2013) but for those with chronic illness, it is exacerbated (Wolbring & Lillywhite, 2023). For me, the fatigue is crushing; a type of fatigue that no amount of sleep could ever cure. The fatigue is exacerbated by pain, and the pain is exacerbated by fatigue, and it becomes an unbreakable cycle. In a society that highly values productivity and perseverance, especially in the face of adversity, fatigue and pain are the most disabling aspects of my life. Our capitalist culture and our industry makes me feel like I must contribute more, for if I do, the less I will be judged for the things I cannot do or require accommodations on. Having a marginalised identity that is not well represented in the Australian LIS workforce (ALIA, 2019) means that I fall into the trap of hope labour, which is defined as ‘unpaid or under-compensated labour undertaken…usually for exposure or experience, with the hope that future work may follow,’ (Mackenzie & McKinlay, 2020). In my career, I have this conscious never-ending feeling of having to prove myself. Will that feeling ever end? Or is it the reality of living in a world that is slow to accommodate and reluctant to understand?  There is a connection, I believe, between hope labour and disability employment. In Australia, disability employment is low (Australian Institute of Health and Welfare, 2022) and there are harmful narratives about employability, ability, and reliability. I feel that in the LIS profession, there are also sentiments that disabled librarians are made for technical positions and not for strategic or leadership roles. All these factors feed exclusionary ideals, and prey on hope labour in the LIS profession, especially for new graduates with disabilities, and disabled librarians seeking leadership roles. 

What I have learned throughout my career

In this paper, I have raised more questions than answers during this exploration of disability identity in the LIS profession. However, there is a role for disabled librarians in making the LIS profession more inclusive, productive, and kinder. Disabled voices matter – they belong in bold, not in the margins of our profession. Throughout my career, I have learned the power of self-acceptance and self-advocacy, whilst also realising there is a delicate dance between adaptability and advocacy. Throughout my career, I have heard phrases like ‘It’s so great to see you overcome your disability to achieve what you have,’ but the truth is I have achieved what I have because of my disability, not despite it. My lived experience has been integral to my LIS work; the way my work is framed around inclusivity and empathy; the way I have understood the need for self-care and that when I focus on the needs of my disabled body, I am a better librarian and colleague. Somehow, I have found a balance between well-being and productivity; adaptability and advocacy; resilience, and the courage to call for change. Inclusion means different things to different people, and there is no prescription for making a disability-inclusive profession. However, the more time we spend allowing disabled voices to be heard, interrogating our own biases, and understanding the diverse experiences of disability, the more inclusive our profession will be. 

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I would like to express my sincere thanks to Jessica Schomberg, Bec Muir and Jaena Rae Cabrera for their valuable and constructive feedback and guidance throughout the review and writing process. I am also grateful to my colleague Emilia Bell, who generously offered feedback on an early draft of this article. I recognise that peer reviewing is a generous act of service on their part. This article is far richer, thanks to their feedback and encouragement.

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