Introduction

Librarians are no strangers to serving people from marginalized communities. Enshrined within the International Federation of Library Associations and Institutions (IFLA) Code of Ethics is the duty to serve all library users equitably and to provide the best possible access to all users (IFLA, 2012). Occasionally, this falls short, often as it relates to maintaining an accessible collection for library users with invisible disabilities.

When imagining someone with a disability, the usual thought is that of a blue and white sign of someone in a wheelchair. Visible disabilities, such as many mobility disabilities and visual disabilities, are easy to conceptualize because people with these disabilities often have tools or resources with them that assist their ability to do normal everyday tasks. Wheelchairs, canes, and walkers are all universal signs of someone with a disability. However, visible disabilities, discussed in the previous chapter, actually constitute only a part of the full spectrum of disability. The rest of these disabilities are referred to as invisible or hidden disabilities because they are not readily apparent to outside viewers. Some examples of invisible disabilities include the wide variety of psychiatric disabilities such as bipolar disorder, schizophrenia, chronic anxiety or depression, and post-traumatic stress disorder (PTSD), as well as other symptoms and disabilities such as chronic pain, chronic fatigue, epilepsy, Attention Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorders (ASD), and various learning disabilities (LD) (Disabled World, 2015).

Disabilities such as these inhibit individuals’ ability to do normal everyday tasks. People with these disabilities often have difficulty remembering information, concentrating or making decisions, have difficulty doing errands and chores by themselves, or even have difficulty getting out of bed, dressing themselves, feeding themselves, or maintaining personal hygiene (CDC, 2022). Many of these difficulties inhibit the user’s ability to access a library’s collection. It can affect the types of resources they can use, the length, the language, the format of the work, or even where the user can browse resources in the first place. However, because of the varied and invisible nature of these disabilities, it is difficult to understand what solutions would best serve this group of library users.

In order to set the stage for the following discussion, it is important to discuss the lens in which this chapter explores the issue of users with invisible disabilities in libraries. Historically, disability has been looked at through the Medical Model of disability; that is to say, that disability is looked at and treated on an individual basis by attempting to treat the individual’s symptoms (Berget & MacFarlane, 2020). This model has infringed on the rights and dignity of the disabled and has consistently been challenged since the 60s in the literature (O’Sullivan & Alexander, 2020). Since the 1980s, new lenses have been developed, including the Social Model of disability and the Gap Model. The Social Model understands disability as an unjust demand on an individual to do something they are not able to do and seeks to change societal structure to accommodate the individual’s needs, whereas the Gap Model combines the two models and attempts to find a balance by acknowledging factors that disabled individuals can change themselves as well as acknowledging societal factors outside of the individual’s control (Berget & MacFarlane, 2020). For the purposes of this discussion about what library staff and administrators can do to provide better accessibility for library users, it is more useful to look at the situation through the lens of the Social Model of disability. The Social Model puts the onus of change on libraries and library staff. Because of the invisible and hidden nature of the issue in question, and the fact that library users have little control over collections practices, it is best to view the issue as a systemic issue rather than one that requires change from the disabled individual themselves.

There is also a discussion in the literature and in the disability community about whether or not person-first language (person with a disability) or identity-first language (disabled person) is more preferred to identify individuals in the disability community. For the purposes of this chapter, both will be used interchangeably, since disability is as varied as language itself, and the preferred language is not universal among all disabled communities.

This chapter will summarize the current state of research into library users with invisible disabilities, outline the challenges that these users face as it relates to management of the library collection, and provide a list of suggested responses to these challenges.

Background and Current Context

Research into the struggles of library users with invisible disabilities has been severely limited with some groups garnering more attention than others. Historically speaking, users with visual disabilities have been researched more than others (Muir, Thompson, & Qayyum, 2019) as well as those with more readily apparent physical impairments (Roberson, Barefield, & Griffith, 2022). Naturally, this is because the ability to see and read text is required in order to access most library resources. As such, it is one of the more obvious communities for librarians to study and work towards making the library more accessible. However, despite their effects on the ability to read and learn, very little research has actually been conducted in studying cognitive disabilities and some print disabilities such as Aphasia, Autism, Down Syndrome, and Dyslexia until fairly recently (Berget & MacFarlane, 2020). Despite the growing interest in library users with these invisible disabilities, research in these areas is often plagued with small sample sizes, sampling errors, and a lack of generalizability. This is particularly true for Dyslexia (Berget & MacFarlane, 2020) and Autism Spectrum Disorder (Cox et al., 2020).

As it stands, there is a growing need for research on library users of all kinds with invisible disabilities. It is estimated that 10% of people in the U.S. have an invisible disability (Disabled World, 2022). For school and academic libraries, the number of disabled students, particularly post-secondary students, is also growing (O’Sullivan & Alexander, 2020, p. 11-12; Wicker, 2022, p. 18-19; Shea & Derry, 2019, p. 327). Library users with invisible disabilities are only going to get more common. Despite the lack of current research, certain challenges are known and there are a number of potential accessibility solutions that librarians can start experimenting with already.

Challenges

There are many challenges associated with providing equitable collections for users with invisible disabilities. The invisible and hidden nature of these disabilities means that they are often overlooked, underestimated, and misunderstood. Invisible disabilities are often under-diagnosed and may require the user to explicitly disclose their disability. Additionally, invisible disabilities create library-specific challenges that do not appear as a challenge related to disability. Lastly, potential solutions to make library services more accessible for people with invisible disabilities sometimes puts different users’ needs in conflict with each other.

The primary difficulty with accommodating library users with invisible disabilities is that, as the name suggests, they are not readily apparent to the outside observer and require the individual to explicitly disclose their condition or struggles. For example, a wheelchair user sitting at the bottom of a staircase with no ramp in sight may be a readily apparent clue of inaccessibility, whereas someone walking in, choosing a print book they are interested in only to find that it is in a font that is hard on their dyslexia, and putting it back, is a far less visible clue of inaccessibility. To an outside observer, it may just look like a lack of interest in the book. People with an invisible disability often pass as abled and are often forced to live without accommodations (Desjardins, 2010).

Although disclosure of disability might help the individual in the hypothetical scenario above, disclosure is generally a step that individuals with invisible disabilities actively avoid. It is difficult to estimate exactly how many people do not disclose their disability, since it would require the individual to disclose that they are disabled at all in the first place, thereby defeating the purpose of non-disclosure. However, the few hints that are out there are not encouraging. As it stands, current estimates are that around only 11-12% of people with disabilities, including visible disabilities, actually disclose their disability (Murphy, 2018; Moriña, 2022). In some settings this has been found to be as high as roughly a third (National Center for Education Statistics, 2022). Regardless of which estimate is more accurate, these numbers suggest that the vast majority of disabled people are capable of hiding in plain sight. If between a tenth and a third of all disabled individuals operate under the radar, so to speak, it is easy to imagine the sheer scale of potential library users that the library fails to serve, unknowingly. Whatever the case, the vast majority of disabled individuals refuse to disclose their disability when asked, so it is clear that library workers cannot rely on users asking for help to know how to make the library more accessible. The library needs to be the one driving for better accessibility.

There is a pretty clear reason for non-disclosure. Discrimination against individuals with invisible disabilities is rampant and often treated casually, usually being passed off as “policy” or “convention” (Desjardins, 2010, p. 107). When they do disclose their disability, they are often faced with denials of access, refusals of assistance, insults, runarounds (Desjardins, 2010), or invasive questioning (Muir, Thompson, & Qayyum, 2019). They also often discover that the organization is unprepared to assist them, even if they are willing (Muir, Thompson, & Qayyum, 2019). Library users with invisible disabilities are acutely aware of the discrimination they face, and it affects how they seek information. Users with depression often only use health resources that were shaped by the presence of a similar mental health condition as their own (Muir, Thompson, & Qayyum, 2019). For example, a user who struggles with depression will prefer food health advice written by someone who struggles with the same eating habits, or lack thereof, as the information seeker. Some individuals only use resources that they can print off because their disability makes it difficult to read from a screen (Muir, Thompson, & Qayyum, 2019), however, many vendors restrict the printing capabilities of their e-resources. Autistic users tend to be especially precise in the resources they want and may not select a different resource on the same topic (Muir, Thompson, & Qayyum, 2019). An inability to accommodate these various restrictions is a failure in the collections practices of the library, yet many users find their requests being treated as absurd. Because of issues such as these, users with invisible disabilities tend to avoid asking for assistance. In addition to the lack of disclosure, many individuals with invisible disabilities are undiagnosed or do not know that they are disabled, and therefore cannot disclose their disability, which only exacerbates the difficulty in identifying these issues (Roberson, Barefield, & Griffith, 2022).

Inaccessibility within collections generally becomes more clear when users attempt to access digital content. Digital content often needs to be filtered through some sort of accessible technology, such as with screen readers, closed captions, or alternative navigation methods, for users with invisible disabilities. Libraries often rely on digital databases to provide online materials, such as articles, e-books, video, and audio sources. In these cases, accessibility is ensured and managed by vendors rather than the library. However, according to a study by Willis & O’Reilly (2020) where they created criteria and evaluated 227 databases, vendors often either do not have explicit accessibility guidelines, or apply their own guidelines inconsistently. Regardless of whether the vendor provided a Voluntary Product Accessibility Template (VPAT) or not, most databases either did not meet all criteria outlined by Willis & O’Reilly (2020) or failed altogether. Most of the accessibility problems revolved around poor implementation or a complete lack of skip navigation, and incomplete or total lack of alternative text for photos presented on the database or resources. In general, larger vendors tended to have better accessibility than smaller vendors, (p. 12), and smaller vendors often had spotty accessibility measures on an item-by-item basis. Regardless of size however, it is clear that vendors cannot be relied upon to make their sites or resources accessible. This can be particularly frustrating for users who rely on these accessibility measures because the issue is often one that the library staff cannot solve directly. In cases like these, users will often abandon otherwise desired sources because they prove too difficult or impossible to access themselves (Willis & O’Reilly, 2020).

Sometimes digital materials are rendered inaccessible for reasons other than navigation through vendor sites. In some cases, the content itself can be created inaccessible, even at the most basic level. For example, even simple documents are often created without encoded titles, headings, or subheadings, which can make documents difficult for screen readers to navigate (Arlitsch, 2018). Bold, italicized, and underlined text is often not detectable by machine readers. In other cases, content is missing alternative text for photos, is designed in a way that is difficult for color-blind readers to read, or does not include captions, subtitles, or transcripts for audio-visual materials. While some of these obstacles are inherently present in some digital or physical content acquired by the library, it is imperative that resources created by the library itself, such as lib guides, programming guides, tutorials, and such, are created with accessibility in mind. Resources created by the library are as much part of the library’s collection as the books, movies, or music that fill the shelves and online databases.

There are also a number of library-specific challenges that also come into play. Roberson, Barefield, and Griffith (2022) list many of these challenges. Overall, disabled library users report mixed feelings about the accessibility of libraries. Although the opinion of libraries themselves were generally positive, their stated challenges were often linked to their favorite part of the library (Roberson, Barefield, & Griffith, 2022). For example, many users who stated their favorite part was the books usually also listed difficulty carrying or retrieving said books from the shelves as their biggest challenge. Surveyed users also tended to state complaints that mirrored their disability, such as distractibility in the environment for users with ADHD, PTSD, Anxiety, and ASD, and the need to walk through the whole library to find an empty study room for those with sensory disabilities and chronic pain (Roberson, Barefield, & Griffith, 2022. These complaints mirrored ones given by abled library users, though disabled library users were affected more profoundly by such challenges (Roberson, Barefield, & Griffith, 2022). Because these challenges mirror typical complaints from abled library users, it can be difficult to ascertain whether the complaint is exactly what it appears to be on the surface or if there is a deeper issue at play.

Other commonly cited challenges were that the library catalogue was difficult to navigate due to the overwhelming amount of information presented at any one time, overcrowding in the library space, and feeling judged for using disability accommodations despite not appearing disabled (Roberson, Barefield, & Griffith, 2022). Naturally, users would avoid using resources located in areas where the atmosphere makes them uncomfortable. Accessible space is as important to collections management accessibility as acquiring accessible materials. If the item needed by the disabled library user is in a place they cannot comfortably access, it defeats the point of acquiring that item in the first place. This is true for both online and physical spaces.

Finding and implementing solutions in and of themselves can be a challenge, as people have different needs and interpret situations differently. For example, some people find comfort in silence, as it is predictable and does not activate sensory issues. However, some find silence to be anxiety-inducing and causing tension because they become hypervigilant of their own actions and the environment around them (Muir, Thompson, & Qayyum, 2019). Solutions to issues such as these are not easy, require long-term investments in library research, and may take a lot of trial and error before something is found that can better serve all patrons.

Responses

Thankfully there are many potential responses already in place to ease the difficulties that people with invisible disabilities may face when using the library. These suggestions range from simple computer software to staff training to the arrangement of the physical library space as a whole.

Simple accessibility solutions include installing browser extensions onto library computers such ATbar, Spreed, Zap Reader, and NVDA to allow users to change font style & size on web pages, add colour overlays, break down text into smaller chunks, and provide Text-To-Speech (TTS) technology (Pittaway & Malomo, 2021). While they are not guaranteed to solve all issues that vendors may neglect to solve themselves, they may make otherwise inaccessible materials available for more users.

There are a number of browser extensions that library staff can use to ensure their websites and resources are accessible for library patrons. For example, accessibility checkers that analyze web pages and measure them according to Web Content Accessibility Guidelines (WCAG), link checkers that check for broken links, and disability simulators such as Funkify that allow library staff to simulate what it is like to use the library website or resource as someone with a variety of disabilities (McCann & Peacock, 2019). These can be especially useful to check if e-resources, or even entire proprietary platforms, are accessible to people with various disabilities. This is important, as many Digital rights Management (DRM), anti-theft features, and proprietary software actually inhibit accessibility (Desjardins, 2010). As previously stated, while accessibility can sometimes be difficult to promote and implement on resources where library staff do not have direct control over the resource, we can at least ensure that library websites, search functions, and library-created resources are made with accessibility in mind.

For solutions that can be implemented in the library space, many solutions revolve around providing more information about the library space up-front and making the space more predictable. For example, meditation rooms can serve a dual purpose as a low-sensory space (Wicker, 2022). Study space availability can be tracked and displayed in an easily accessible central location, and some can even be guaranteed available for students with disabilities (Roberson, Barefield, & Griffith, 2022). Fluorescent lights have a tendency to buzz loudly and provide light that is far too strong for some users with sensory disabilities, and should be replaced with quieter lights that are not as harsh on the eyes. A comfortable space will encourage users to use resources located in the areas where they are comfortable.

Staff training can include a number of changes that vary in resource needs. Even something simple such as a “please interrupt me” sign can encourage library users with social anxiety to approach library staff (Desjardins, 2010). This is especially helpful if discreet avenues to contact library staff are also provided (Roberson, Barefield, & Griffith, 2022), or additional resources for self-service are provided (Conley, Ferguson, & Kumbier, 2019). If a user wants a resource, but needs assistance acquiring it, allowing them access to that help in a way that is subtle, comfortable, and better yet, automatic, will grant access to more resources. Targeted libguides can be created to showcase tools for users with various disabilities, such as a guide on browser extensions or even videos modeling information-seeking behaviour (Roberson, Barefield, & Griffith, 2022). Extended loan periods can also be a huge help for disabled users, as it allows the user to spend the time they need on the resource, allowing them to select lengthier resources.

Conclusion

Invisible disabilities are varied, generally misunderstood, and difficult to detect. Potential avenues for providing greater accessibility to libraries for users with invisible disabilities are often vague and can conflict with the needs of other library users. While there are currently no definitive answers on how librarians can make their collections more accessible to these groups of users, many small, short-term aides exist that can be used right away. However, it is clear that institutional changes need to be further researched, developed, and implemented in order to make the library experience more comfortable for these often overlooked groups. In situations such as this where evidence of the issues exist, but are ill-defined, the first step is to include the affected users in discussions about library accessibility. The need to understand the issues these library users face and why is paramount to being able to truly provide a collection that everyone can use regardless of ability. Nothing about us without us.

Sources for Additional Reading

American Library Association [ALA]. (2022, November 28). Accessibility | Advocacy, Legislation, and Issues. https://www.ala.org/advocacy/diversity/accessibility

The ALA has a good list of resources about disabled library users in general ranging from specific resources and products to more abstract theory on library accessibility. In particular, they have several resources on the Americans with Disabilities Act (ADA), resources for blind and print disabilities, and web accessibility.

Autism Self-Advocacy Network [ASAN]. (2022, November 28). Resource Library. https://autisticadvocacy.org/resources/

ASAN has a long list of resources available, particularly about how the use of language can be used to make spaces more or less accessible to autistic individuals. It has toolkits that can be used to assist users across the spectrum depending on the severity and types of needs necessary for the individual. Because ASD is a social and behavioural disability, understanding how autistic people use language is vital to being able to serve them where they are at.

CAST. (2022, November 28). About CAST. https://www.cast.org/

CAST is the organization currently championing Universal Design for Learning [UDL]. They believe that everyone has the right to high-quality education, and can excel in their learning if the educational methods are accessible to them. CAST has many resources, products, and services to help organizations make their spaces more accessible for all learners. They have online courses on accessibility, consultation services, and a plethora of online tools for librarians and educators to make their space and practice more accessible.

Educating All Learners. (2022, November 28). Education Resource Library. https://educatingalllearners.org/

Educating All Learners stay on the cutting edge of disability research with up-to-date research, new case studies, and breaking news on disability. A highly recommended resources for librarians who want to keep up with current developments on research into educating disabled learners.

Hidden Disabilities. (2022, November 23). Hidden Disabilities. https://hiddendisabilitiesstore.com/us/

The yellow sunflower on a green background has become a common sign for individuals with invisible disabilities to identify themselves with subtlety. Hidden Disabilities has a store for sunflower signage and services for paying businesses to help them become more friendly to users with non-visible disabilities.

McCann, S. & Peacock, R. (2019). Be an ally for accessibility: Tips for all librarians. College & Research Libraries News, 80(5), 266–268. https://doi.org/10.5860/crln.80.5.266

This short article, though cited in this chapter, is full of good suggestions for librarians who want to make their libraries more accessible. The authors concisely explain how browser extensions, accessibility checkers, and familiarity with captions and audio descriptions can help librarians create more accessible web experiences for their users.

Oslund, C. (2014). Supporting college and university students with invisible disabilities: A guide for faculty and staff working with students with autism, AD/HD, language processing disorders, anxiety, and mental illness. Jessica Kingsley Publishers.

Although some of the terminology is dated, Christy Oslund does an excellent job dispelling common myths about all kinds of invisible disabilities such as ASD, ADHD, language disorders, anxiety, depression, and OCD. The book finishes off with chapters eight and nine exploring Universal Design in education, while chapter ten discusses the implementation of accessibility policy. Overall, it is an excellent starting point for anyone who does not really know where to start.

References

American Library Association [ALA]. (2022, November 28). Accessibility | Advocacy, Legislation, and Issues. https://www.ala.org/advocacy/diversity/accessibility

Arlitsch, K. (2018). My User is a Machine: Making Information Accessible to Disabled Users by Structuring for Machine Intermediaries. Journal of Library Administration, 58(7), 728–738. https://doi.org/10.1080/01930826.2018.1514834

Autism Self-Advocacy Network [ASAN]. (2022, November 28). Resource Library. https://autisticadvocacy.org/resources/

CAST. (2022, November 28). About CAST. https://www.cast.org/

Centers for Disease Control and Prevention [CDC]. (2022, October 28). Disability Impacts All of Us. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html

Conley, S., Ferguson, A., & Kumbier, A. (2019). Supporting students with histories of trauma in libraries: A collaboration of accessibility and library services. Library Trends, 67(3), 526-549. doi:10.1353/lib.2019.0001

Cox, B. E., Nachman, B. R., Thompson, K., Dawson, S., Edelstein, J. A., & Breeden, C. (2020). An exploration of actionable insights regarding college students with autism: A review of the literature. The Review of Higher Education, 43(4). 935-966. http://dx.doi.org/10.1353/rhe.2020.0026

Desjardin, M. (2010, May 1). Invisible Disabilities. Canadian Library Association, 26(3), 106-108.

Disabled World. (2015). Invisible Disabilities & Information. https://www.umass.edu/studentlife/sites/default/files/documents/pdf/Invisible%20Disabilities%20List%20%26%20Information.pdf

Disabled World. (2022, October 18). Invisible Disabilities: List and General Information. www.disabled-world.com/disability/types/invisible/

Educating All Learners. (2022, November 28). Education Resource Library. https://educatingalllearners.org/

Hidden Disabilities. (2022, November 23). Hidden Disabilities. https://hiddendisabilitiesstore.com/us/

International Federation of Library Associations and Institutions [IFLA]. (2012). IFLA Code of Ethics for librarians and other information workers (full version). https://www.ifla.org/publications/ifla-code-of-ethics-for-librarians-and-other-information-workers-full-version/

Kim, S. Y., & Crowley, S. (2021). Understanding perceptions and experiences of autistic undergraduate students toward disability support offices of their higher education institutions. Research in Developmental Disabilities, 113, 1-11. https://doi.org/10.1016/j.ridd.2021.103956

McCann, S. & Peacock, R. (2019). Be an ally for accessibility: Tips for all librarians. College & Research Libraries News, 80(5), 266–268. https://doi.org/10.5860/crln.80.5.266

Moriña, A. (2022). When what is unseen does not exist: disclosure, barriers and supports for students with invisible disabilities in higher education. Disability & Society, p. 1-20. https://doi.org/10.1080/09687599.2022.2113038

Morris, S., Fawcett, G., Brisebois, L., & Hughes, J. (2018). A demographic, employment and income profile of Canadians with disabilities aged 15 years and over, 2017. Statistics Canada. https://www150.statcan.gc.ca/n1/pub/89-654-x/89-654-x2018002-eng.htm

Muir, R., Thompson, K. M., & Qayyum, A. (2019). Considering “atmosphere” in facilitating information seeking by people with invisible disabilities in public libraries. Association for Information Science & Technology, 56(1), 216-226. https://doi.org/10.1002/pra2.17

Murphy, F. (2018). Deciding to disclose an invisible disability. https://www.eurekastreet.com.au/article/deciding-to-disclose-an-invisible-disability

National Center for Education Statistics. (2022). A majority of college students with disabilities do not inform school, new NCES data show. https://nces.ed.gov/whatsnew/press_releases/4_26_2022.asp

O’Sullivan, K. M., & Alexander, G. (2020). Toward inclusive outreach: What special collections can learn from disability studies. RBM: A Journal of Rare Books, Manuscripts, & Cultural Heritage, 21(1), 11–25. https://doi.org/10.5860/rbm.21.1.11

Oslund, C. (2014). Supporting college and university students with invisible disabilities: A guide for faculty and staff working with students with autism, AD/HD, language processing disorders, anxiety, and mental illness. Jessica Kingsley Publishers.

Pittaway, S., & Malomo, M. (2021). “So you want me to read for my degree?”: A universal design learning approach to reading. Insights, 34, 1-10. https://doi.org/10.1629/uksg.549

Roberson, C. A., Barefield, T., & Griffith, E. (2022). Students with disabilities and library services: Blending accommodation and universal design. The Journal of Academic Librarianship, 48, 1-10. https://doi.org/10.1016/j.acalib.2022.102531

Shea, G., & Derry, S. (2019). Academic libraries and Autism Spectrum Disorder: What do we know? The Journal of Academic Librarianship, 45, 326-331. https://doi.org/10.1016/j.acalib.2019.04.007

Wicker, M. (2022). Invisible disability and inclusivity in libraries. Information Today, 39(6), 18-19.

Willis, S. K., & O’Reilly, F. (2020). Filling the gap in database usability: Putting vendor accessibility compliance to the test. Information Technology & Libraries, 39(4), 1–30. https://doi.org/10.6017/ital.v39i4.11977