Toward Holistic Accessibility: Narratives from Functionally Diverse Patrons

JJ Pionke

JJ Pionke (pionke@illinois.edu) is Assistant Professor, University of Illinois at Urbana-Champaign.

This study sought to get a more holistic view of how the functionally diverse, people with disabilities, view the library’s accessibility at a large academic institution by utilizing interviews that incorporated open ended questions. Patrons were patrons of the library at all levels including faculty, staff, and students. Patrons also fell into one of four disabilities, either Autism, motor impairment, Post-Traumatic Stress Disorder, or visual impairment. An analysis of the transcripts indicates that patrons had many thoughtful insights into not only how the library was or was not accessible but also on how to address the issues that were presented. Based on the results, three recommendations for improvement in libraries are made including developing more empathy for the functionally diverse, empowering the functionally diverse to come forward and speak up, and incorporating universal design techniques to develop better spaces, buildings, and services.

While the Americans with Disabilities Act (ADA) was passed into law in 1990, codifing accessibility for people with disabilities at a federal level in the United States, there are many loopholes which allow older buildings to circumvent true accessibility in favor of “compliance.” Support for the law in libraries has been mixed from enthusiastic acceptance to downright hostility. Current attitudes toward the ADA revolve heavily around compliance with little effort beyond a “one size fits all” approach toward accessibility with the focus largely on physical disabilities.

A striking feature of the general literature about libraries and the functionally diverse (people with disabilities) is that the functionally diverse themselves are rarely asked for their input on their library experiences. Librarians typically interview or survey each other or library administrators and broadly focus their questions on policy or current assistance models and initiatives. That is not to say that the functionally diverse are ignored in favor of librarian voices, however their narratives are often limited or absent. This study interviewed a variety of functionally diverse patrons with an aim to understand their perceptions toward a large academic library and its level of accessibility, as well as what could be improved.

Literature Review

People with disabilities comprise roughly 15 percent of the global population (about 1 billion people) according to the World Health Organization.1 This is a significantly sized population that is understudied and not well understood within the library profession. This is especially true of people who are neurodiverse (autism, dyslexia, and Tourette Syndrome), have learning disabilities (dyscalculia, dysgraphia), or mental disabilities (post-traumatic stress disorder, Schizophrenia). In libraries, there has been a focus on this population decades before the ADA came into effect. Gibson surveyed library and information science programs in 1977 and found that many of them offered some kind of course, seminar, or other preparation for working with “handicapped individuals.”2 Note that the term “handicapped,” in common use at that time, is now considered to be offensive. The early literature on assisting people with disabilities is largely positive and highlights librarian awareness of people with disabilities, such as Mularski’s work in 1985 that queried university libraries about their awareness of and capabilities, both with physical equipment and in staff training, to assist patrons who were deaf.3 However, the literature also underscores some librarians’ negative attitudes toward people with disabilities as exemplified by Jahoda and Faustini’s survey of academic libraries in 1982 where they included a free response comment from a respondent, “the handicapped are less than 2% of our student body! With the economic situation the way it is, we need funds and positions to serve the other 98% . . . I feel the emphasis on ‘handicapped’ will be short lived as we just can’t afford it.”4 Unfortunately, this sentiment is echoed in Scheimann’s master’s thesis where he surveyed library directors of small to medium-sized public libraries in 1994 about their compliance with the then new ADA regulations.5 While such blatant negative attitudes are fading from the literature, the pervasive use of language that includes the phrase “dealing with” as applied to “problem patrons” indicates that negative perceptions of the functionally diverse persist.

To counteract some of these negative perceptions, there are advocacy articles within the profession designed to discuss the needs of the functionally diverse. Huang was on the leading edge of advocacy by raising awareness of the needs of people with disabilities the very year that the ADA was signed into law, 1990.6 Lenn echoes Huang about the need for ADA compliance in 1996 thereby keeping the ADA at the forefront of the profession.7 While earlier articles like those of Lenn and Huang focused largely on physical disabilities, today there is a greater awareness of mental disabilities as in the case of Remy and Seaman’s informative article on how libraries can better assist people with autism.8 Generally speaking however, the aforementioned articles are about the functionally diverse and do not necessarily incorporate the actual voices or narratives of the functionally diverse.

That is not to say that there has not been outreach to people with disabilities to ascertain what their needs are and how libraries might assist them. Mendle engaged in a survey of students with physical disabilities and students with learning disabilities to create an adaptive technology lab at the University of Alabama.9 Catalano determined that for students with disabilities who were distance learners, there needed to be a greater emphasis on universal design for learning and that online learning is a gateway for many people with disabilities to education.10 The literature is liberally salted with case studies and surveys that focus on a single disability and the intervention that the library has engaged in to better assist that singular disability, for example the use of assistive technology and students with autism in school libraries,11 private study carrels and student volunteer readers for students with visual impairments,12 and assisting people with hearing impairments in their research needs.13

Many articles however focus on surveying librarians, library schools, and library directors/deans about what it is that is being done to address the needs of the functionally diverse. Willis for instance updated an earlier survey that had been deployed to academic institutions and applied that updated survey to health sciences libraries to ascertain the progress made in eliminating physical barriers for people with physical disabilities and found that while health sciences libraries were doing a fairly good job with accessibility, they still had areas that needed attention.14 Samson interviewed librarians who had responsibility for functionally diverse patrons at eight universities to determine best practices for service to those patrons and found that universal design and access were key to creating accessibility.15 Walling conducted a library school survey to determine how much education new professionals were receiving about the functionally diverse and how best to assist them. This research showed that while library schools were at least discussing people with disabilities in classes, it was perfunctory at best, and adaptive technology was not discussed at all.16

Advocacy and informative articles, as well as pieces that focus on what the profession is doing, are needed, especially regarding a population that is often misunderstood, overlooked, or completely ignored. While library professionals do conduct quantitative and qualitative research on the functionally diverse, the focus is often on a single disability like autism or deafness or a single type of disability in a range like physical disabilities such as visual impairment and mobility impairment. Very little research has been done that looks across types of disabilities to see where there are connections, similarities, and differences. This paper specifically reached out to a broader range of disabilities to get a better understanding of how that range in disability affected the use of libraries by the functionally diverse.

Findings from the following study strongly indicate that libraries have a ways to go in understanding patrons who have disabilities as well as in making library services and spaces truly accessible. Two possible ways in which to address the concerns raised by patrons are: (1) the use of mindfulness as a way to build empathy and compassion within library employees toward people with disabilities and (2) the use of Universal Design theory.

Mindfulness has its roots in Buddhism and was popularized in the United States by Jon Kabat-Zinn.17 Mindfulness is little discussed within librarianship and when it is, the focus is on mindful leadership.18 Mindfulness has also been examined as a way to manage stress and to manage daily workload in law libraries.19

Another, and perhaps more significant, recommendation is to include Universal Design from the outset of the design process when creating new or revised services and spaces. Universal Design incorporates the needs of all users, which includes people with disabilities, children, and the elderly, into the design process from the beginning to make the curriculum, space, or service accessible to everyone regardless of who they are.20 Universal Design has been embraced by a variety of disciplines including architecture (new buildings), human computer interaction (how web and device interfaces are designed to be intuitive to users), and education (lessons that are designed to reach all learners).

This study set out to specifically query a variety of functionally diverse patrons to determine what the confluence and divergence of experiences might be between disabilities. As such, this small study represents a unique perspective on functional diversity than the previous literature.

Method

This study recruited functionally diverse patrons at a single large research university in the 2015 fall semester with a focus on people who are visually impaired, mobility impaired, autistic, or have post-traumatic stress disorder (PTSD). These four disabilities reflect a range of functional diversity experiences including both hidden and visible disabilities as well as physical, sensory, and mental disabilities. Visual impairment can encompass a variety of conditions from a complete lack of sight, to partial sight, to depth perception issues and reading impairment. Mobility impairment can range from having no use of the lower extremities to pain conditions that making walking or movement painful. Autism is a “group of complex neurodevelopment disorders characterized by repetitive and characteristic patterns of behavior and difficulties with social communication and interaction.”21 PTSD can include hypervigilance (extra alertness and awareness of one’s surroundings), heightened senses, avoidance behaviors (limiting environment or social situations that remind the person of past trauma), and reactionary behaviors (quick to anger, physically striking out).

A total of eight patrons were interviewed over the course of three weeks based on availability. The term “patron” is being used broadly here to refer to undergraduate students, graduate students, faculty, and staff. Patrons were recruited through email announcements, word of mouth, and posters. Patrons were asked to fill out a survey to determine study eligibility. Each interview was audio recorded and lasted anywhere from 35 to 85 minutes. Each patron was compensated with a $30 Amazon gift card.

Study questions were open ended and focused on exploring what patrons thought about the library in terms of their own disabilities. Frankness in response was highly encouraged and so were suggestions for improvements that could be made to the library—physically, digitally, or in terms of personnel training.

Emergent Themes from the Interviews

Findings were drawn from the interviews through the use of a holistic approach rather than trying to impose a preset group of themes on the data. Analysis of transcripts indicates that there were fifteen broad categories of concern broken down here with several subcategories where appropriate.

Empowerment

Some patrons were impassioned with the need to not only be empowered to ask for help but to encourage their fellow functionally diverse to ask for help as well. One patron observed, “I guess I’ll just say that people with disabilities tend not to ask [for] what they need. If the library wants to help students with disabilities by creating a welcoming environment [that] is key.” This statement is particularly powerful because it illustrates two points at once. There is the self-reflection that people with disabilities don’t ask for the specialized help that would make their learning easier and more accessible. There is also the implication that the library, as it stands now, is not a welcoming place for people with disabilities. Another interaction expressed this sentiment of empowerment by stating, “It’s not about giving students requests, but giving students ideas about what to request.” One patron likened having a disability to being in the closet, a phrase that was popularized by the gay rights movement. This contextualizes having disabilities as a civil rights and social justice issue and in need of the same kind of support and empowerment as other civil rights movements such as voting and equality.22

Facilities

Perhaps most notably, patrons like the libraries but wish that they were accessible and welcoming for all people. One patron stated, “The front door for someone with a disability is kind of the back or side door for everyone else.” In terms of library facilities, patrons had a variety of concerns including not enough quiet places to study, wishing more libraries allowed food, lockers to secure their belongings so they don’t have to carry everything out of the library just to get a coffee, better layout for easier access to spaces and materials, and better lighting on the outside of the buildings. All of these concerns are generally pretty typical for students but can be even more important for people with disabilities because of their unique needs, for instance if a student has a chronic pain condition, carrying their backpack even for short trips can be painful and limit how much work they are able to accomplish that day. Likewise, a student with diabetes or other food/liquid intake special needs does require more readily available access to food and drink.

Patrons with autism and PTSD made observations about the library as a space as a whole. There was a general agreement that the main stacks, which are labyrinthine, are intimidating and scary. All indicated that they generally see the library as a safe space, a refuge, and quiet. This plays into the stereotype of libraries as quiet spaces meant for serious work and does indicate that while more and more libraries are becoming noisy locations with collaboration spaces and learning commons, for many people, especially those that are neurodiverse or have anxiety disorders, that sense of safety and quiet is important.

Safety

Safety was an issue that patrons with autism and PTSD mentioned as being important to them. For patrons with autism, responses indicated an awareness and wariness around high theft areas. Patrons with PTSD, however, had far larger concerns including feeling intimidated by patrolling uniformed library security officers and especially how uniformed security officers create a false sense of security regarding theft and other crimes that take place in the library. The patrons with PTSD were also more generally aware of their own unique issues and one of them specifically mentioned using the “Safe Walks” police escort program at night because of it.

One patron with PTSD noted that they didn’t feel unsafe but they didn’t really feel safe either when using library facilities. They also pointed out that their response to threat and violence was to fight and they were aggressive when it came to being intimidated or threatened. For those who have experienced trauma, the “fight, flight, or freeze” responses to perceived threats are most typical.26 While many people flee or freeze in place, the patron’s response of the “fight” reaction indicates that awareness of such a response and training in de-escalation is probably needed by library staff.

Communication

Communication came up in a variety of ways in the interviews and is broken down into several categories.

Struggles with Communication

Patrons expressed a deep struggle with communication when they are tired and stressed, especially when they know what they need but are having a hard time expressing it and feel like they are imposing on the library employee that they are getting help from. For instance, one patron remarked, “I get that people are busy, but it can be difficult to explain that I’m having a hard time explaining. . . . I know I am saying non-verbal, but what I mean is less verbal. . . . Finding a bathroom, people understand that type of urgency, but when it’s more nuanced, like a research goal—I mean, I’ve had situations where I was pushing a syllabus towards them and going ‘That. That’s the thing.’” Here, the patron is acknowledging that the communication issue is on their end, rather than on the library’s part. The patrons want to communicate but have trouble doing so and they don’t perceive that there are ways to communicate to library employees in a timely and private way.

Frustration with Communication

In the case of frustration with communication, patrons felt that there were many times when they asked for help but that they didn’t get it, it was too hard to get help, or the library employee wasn’t patient enough. Specifically mentioned was frustration with calling, especially not knowing who or where to call, using the virtual chat because the patrons have difficulty typing and couldn’t keep up with the library employee, and needing to train the people they work with because the library employees don’t have enough training in how to assist people with disabilities. A tone that appeared throughout the responses in this category was not wanting to be a burden. As stated by one patron. “Mainly, I don’t know where stuff is and I don’t want to be a pest.”

Interactions with Library Employees

This category is different from communication in that the heart of the issues, positive or negative, revolved around issues of expertise, attitude, training, and circumstance.

Expertise Needed

The need for expertise was expressed by graduate student patrons doing advanced work. They stated that they often looked for full time employees rather than graduate or student assistants. One patron stated, “there’s sympathy, empathy, general interest and support, care—but I need expertise.” This was supported by statements like, “They certainly don’t know much about the computing work stations” and “It’s easier to do it yourself than supervise and monitor” and “Usually, if I were to call, because usually it’s a student at the front desk that picks up, I’ll get transferred three or four times before I get to the right person. And even after getting transferred three or four times, I’ll just get sent to voicemail.” These interactions indicate an underlying tone of frustration and the interactions also point out that it is hard to get to subject experts.

Negative Interactions

Negative interactions with library employees revolved around the lack of expertise and more importantly the lack of compassion and empathy. Interactions with library employees that turned negative usually involved needing some accommodation for disability that wasn’t necessarily obvious, like needing to leave a book bag at the front desk so the patron could more easily get a cup of coffee and return or being intolerantly corrected on how to use materials.

Positive Interactions

Patrons mostly had good things to say about their interactions with library employees, including statements that, “Everyone’s been very kind to me” and “[They’ve] always been quite professional and efficient. . . . They’re really helpful and clear.” However, these positive statements are generalized and there was very little in the way of specific positive feedback.

Training

Patrons expressed a deep frustration with the clear lack of training and sensitivity regarding interacting and assisting people with disabilities. While patrons all stated that they had positive interactions with library employees, they also expressed dismay at the lack of disability awareness. For example, one patron stated, “I want to be treated in a library service context, like ‘if I need help, I’ll ask.’ If people pass by me, looking around in the library, if it’s staff, they’ll say ‘let me know if I can help you with anything.’ But sometimes people get pushy about it, assuming I need help. I’d much rather be in control when asking for help.” Another patron expressed, “I feel like in general, people are not as understanding as people with disabilities that aren’t so visible.” This was echoed by another patron with an invisible disability, “I don’t realize that what’s going on is a part of my disability. A bad day with my anxiety disorder could look different than everyone else’s.” All of these interactions point to a very clear need for more training within the library as well as a greater variety and availability of training literature, programs, and seminars.

Perceptions of Libraries

Patrons had mostly positive views of libraries in general and really appreciated having libraries available as spaces to do work. However, their perceptions of libraries often conformed to stereotypes in terms of thinking of libraries as quiet safe havens. One patron remarked, “I find a lot of the times I encounter undergraduates in the library who don’t seem to have the same socialization in libraries that I do. Like they act like they’re in a frat house or something. They have a disrespect for what the space should be for. Just because you can talk in a place, doesn’t mean you can party in a place.” Negative connotations about undergraduate students aside, the patron’s theory about socialization being different could be partly true as generational differences in patrons affect how they interact with the library and with each other. This patron was a graduate student who was much older. As times have changed, libraries have changed with them, often being the first place in a community to adopt new technologies like computers. Yet, outdated perceptions of libraries remain, as clearly evidenced here. Another example is when a patron was taking a picture of one of the paintings in the library and a library employee reprimanded her for doing so, “She was like in her twenties and she already had the dour librarian face!” The perception of a “dour librarian” is one that is pervasive in popular culture and is certainly not helped by abrasive interactions and confusing rules as perceived by patrons.

Accessibility

Patrons had a lot to say about accessibility and this subject is divided into four subheadings.

Frustration

Patrons mentioned time and again that they had positive experiences with library employees, but that there was room for improvement and more importantly, that the library as a whole didn’t go far enough in consistency or fully thought out ways to be accessible. A patron who is mobility impaired stated, “Like I need to return the resources I checked out, but it’s the middle of January and it hasn’t been plowed in a week and it’s hard to get around . . . a special understanding of times when your disability is going to make it difficult to get to the library in the first place or back to the library.” Patrons with disabilities are not asking for special treatment. They are concerned with being able to use the resources of the library without penalty when their disability gets in the way because of factors beyond their control like the weather. Patrons acknowledged that the library is trying to help them, but at the same time, they are aware that the library isn’t actually taking their specific needs into consideration. “I’ve seen incremental progress over time. I think I’ve mentioned that the workstations are still wonky. [The workstations] are still coming from the perspective that someone needs it there, but it’s not taking my needs into consideration. Progress, but not success.” To address these issues, it might be better for libraries to start doing usability testing, including focus groups and user observation, to understand exactly how spaces can be built or adapted to the needs of all users thereby making buildings and services accessible for all.23

Physical Concerns

Patrons stated that there were a wide range of inconsistencies regarding physical access to spaces and materials from poor lighting to aisles not wide enough for wheelchairs. Some patrons felt that the barriers to accessing materials in a timely way was just too great and so they had largely given up trying to get to the materials on their own and instead relied on trying to get assistance. However, they also stated that their preference is to be independent but that the current inaccessibility of spaces and materials makes that nearly impossible.

Digital Issues

A significant concern for patrons was being able to easily access digital resources. For patrons who were visually impaired, their concerns revolved around accessibility of databases via screen readers. Other patrons were concerned with browsing online to find materials because of the inaccessibility of the stacks. Due to the distributed nature of resources, particularly books, patrons also wanted more centralization for getting and renewing resources.

Suggestions

There were many different suggestions ranging from communication to streamlining processes. Suggestions included alternative forms of communication like word boards, a disability liaison, easier ways to return and renew books including interlibrary loan materials, and more mental health support like therapy animals that are popular at final exams time.

Cleanliness

Patrons indicated that cleanliness was a concern, especially in computer lab spaces. They were concerned with how often spaces are cleaned and whether or not cleaning supplies could be easily available to wipe down the spaces that they use on their own. They were also concerned with the cleanliness of rented equipment, such as headphones. While the patrons did not state this was a concern, neurodiverse individuals often take comfort in routine and for some, cleanliness and orderliness. For instance, if the person has an anxiety condition, like PTSD, being in a clean and sanitary location might be really important. That said, no two manifestations of a condition are exactly the same, though they do have certain hallmarks of similarity which allows for generalizations like people with PTSD having exaggerated startle responses. It should be noted that some libraries on campus do make disinfecting wipes available but that they might be in out of the way areas and therefore need greater visibility.

Signage

Signage was a major issue, especially for patrons with mobility concerns. For some, signage issues revolved around poor wayfinding signs and for others, the current state of signage wasn’t high contrast enough or clearly marked. Route planning, especially for mobility impaired patrons was a high priority made more difficult by the lack of signage or poor signage or inaccurate signage. Because of the labyrinthine nature of the main stacks, accurate and easy to read signage is at a premium but does not currently exist. Signage concerns were stated for both the interiors and exteriors of buildings, particularly because not all entrances are mobility impaired accessible.

Universal Design

Mobility impaired patrons brought up universal design as being a key factor in their desire for where the library and society should go as a whole. “Universal design, also known as life span design, seeks to create environments and products that are usable by children, young adults, and the elderly. They can be used by people with ‘normal’ abilities and those with disabilities, including temporary ones.”24 As people with mobility disabilities often have greater difficulty navigating spaces, they are perhaps more acutely aware of just how poorly spaces and architecture is designed. One patron very aptly stated, “The most important thing for me is hoping that whatever ability level other people have, accessibility issues are for everyone. It’s not about who has problems and fixing it for them. The most important thing is hoping my experiences help with making other people’s experience better.”

Hours

As in most libraries, hours of operation were a concern for patrons. They expressed a deep frustration with libraries not being open longer and expressed a desire for a 24 hour library. While patrons had many of the same concerns as students without disabilities, primarily having a quiet space to study especially when cramming for tests or writing papers at the last minute, the need for longer hours was evident in more subtle ways because of the patron’s disabilities. While there are two libraries on campus that are 24/5, they are both known to be noisy and overwhelming to the senses. As one graduate student patron with PTSD noted, “I thought I could go there and I realized that I couldn’t go there. It wasn’t for me.” They later remarked that the environment of the Undergraduate Library was just too overwhelming for a student who not only needed quiet but also a sense of safety from others.

Privacy

Privacy was cited as a need in part because of the nature of disability. Because some people with disabilities already have very visible disabilities, getting help that accentuates their disability in a public setting is deeply uncomfortable. One patron who is visually impaired stated, “I know that people stare at me on the sidewalks, walking down the street periodically. It’s not the most comfortable sort of thing. I just want to keep doing what I need to do” and “There’s no privacy. There’s no place where I can take a screen and smash it in my face if I really need to.” These statements illustrate a lack of sensitivity at a societal level but also at the library level. While many libraries would more than likely provide a private space for this patron to “take a screen and smash it in my face if I really need to,” this patron would have to request it, which would bring further attention to their disability, thereby creating a vicious cycle of wanting privacy but having to give up privacy to get it.

Marketing

A major emergent theme was that patrons asked for resources or services that already exist and may have existed for quite some time. To that end, asking about marketing became a question that was added to the interview as an ad hoc question. The data fell roughly into two themes.

How to Reach Patrons

Some felt that email was really effective and others felt that it would be easier to reach them via posters. Email was generally a bone of contention for patrons in terms of how much they read and what they would read—some stating any email would be read while others said that email would be read only if it was specifically aimed at them in terms of their class level or major.

What Needs to be Done

Perhaps most distressingly, patrons clearly articulated a laundry list of issues that indicate that the library has failed to educate, market, and reach out with the kinds of information that patrons are looking for. For example, patrons stated that they wish they had access to knowing what resources are actually available, what technology items can be checked out and for how long, the loan periods on materials was often confusing and hard to navigate, that books are shelved by subject for maximum browsing, places where students can share information about their projects and student groups, transportation options especially during academic breaks, and knowing where quiet study spaces are located. As one patron stated, “I worry about needing things that already exists.” Which starkly illustrates how little the patron was aware of what was available to them; a failing on the library’s part, not the patron’s.

Discussion and Conclusion

Limitations of study

While the eight interviews that were conducted yielded valuable information, a wider range of experiences would be useful in making further determinations about accessibility at the university library. However, the in-depth nature of the interviews created a portrait of the problems and concerns that students with a range of disabilities face in the library. As there are many libraries on campus, focusing on the experiences of just one library at a time would also be of significant use to make more particular recommendations and changes to accessibility in each unique location. Further, exploring the differences in patron type and by disability would also add to the understanding of accessibility needs.

Discussion

While these interviews occurred at a single large academic institution, the width and breadth of the concerns raised by patrons indicates a troubling trend that is likely repeated at other institutions. It is clear that patrons generally loved the library and the library employees that work there. However, functionally diverse patrons also deeply struggled with getting their needs met and even being able to articulate what those needs were. Their gaps in knowledge pertaining to the basic workings of the library indicates that more time needs to be spent on outreach and marketing to make patrons more aware of the services available as well as streamlining access to those services, among other things. Patrons had many suggestions and ideas for improvement of spaces and services. More importantly however, were the more intangible concerns that patrons raised such as empowerment, universal design, and empathy.

Empowerment

A language theme that emerged throughout the interviews with the patrons was use of phrases similar to “I don’t want to be a bother” or “I don’t know how to ask” or “I’m intimidated by the (process, librarian, environment, etc.).” The question then becomes how to empower the functionally diverse to actively reach out to their libraries and ask for what they need. Green’s article “Empowering library patrons with learning disabilities” may seem like a good place to start but Green largely focuses on making assistive technology available to people with learning disabilities.25 While the availability of assistive technology and specialized services is absolutely empowering, not as many people use them in part because of the perception of use as a marker of disability especially if the person’s disability is a hidden one. In the functionally diverse community, invisibility in a key survival skill and that includes not speaking up. For this marginalized population, the key component to empowering them borrows from union organizing and user experience.

Saul Alinsky, one of the fathers of union organizing states that a good organizer, “learns the local legends, anecdotes, values, idioms. He listens to small talk. He refrains from rhetoric foreign to the local culture.”26 What Alinsky is pointing out here is that a good union organizer, or as in the case of libraries, a good librarian trying to reach out to an underserved and little understood population, needs to become part of that population and understand the needs and desires of that population from within. Alinsky is a proponent of observation and understanding the core values and morals of the group being organized. In academia, we might focus on the user experience and specifically on ethnographic methods to learn the insider information that librarians might lack. “Using ethnographic methods helps us learn about the people using our libraries because we start to understand how they use them, in ways they might not even be conscious of themselves.”27 In combination, union organizing techniques of observation and discussion with user experience and other ethnographic methods, come together to create a powerful set of tools in which to reach out to the functionally diverse in a way that is much deeper than surface level understanding. This will lead to better understanding and communication and more than likely, a better library for everyone.

Universal Design

Universal design is a tool that can be applied to all types of scenarios and disciplines, though it is most commonly thought of in terms of architecture and spaces as well as learning. Using concepts of universal design when either planning a new building or redesigning a space will go a long way in making sure that the physical spaces are accessible to all people, from those with permanent disabilities to people with more subtle disabilities like children just learning to walk or someone experiencing a temporary disability. Gail Staines’ book, Universal Design: A Practical Guide to Creating and Re-Creating Interiors of Academic Libraries for Teaching, Learning and Research, while well thought out in terms of universal design thinking, hardly mentions the functionally diverse, and is still a good resource to keep in mind when thinking about how to make library spaces more accessible to all.28 Taken in conjunction with many of the concepts presented in A Web for Everyone: Designing Accessible User Experiences, while focused on website accessibility, gives excellent ideas about how to keep the functionally diverse in mind when thinking about website development and could easily be applied to universal design.29 These two resources can serve as a way to open up thinking about spaces and functional diversity for libraries that are going through a new build or redesign of spaces or buildings.

Empathy

The othering of the functionally diverse is something that happens within society and the media constantly. To combat the othering that occurs, re-humanizing the functionally diverse to understand and empathize with them and their needs is needed. Ken Robinson, in discussing how organizations are not machines states that, “People have values and feelings, perceptions, opinions, motivations, and biographies, whereas cogs and sprockets do not.”30 As a popular disability activist motto states, “I am not my disability.” Both of these statements say the same thing: people are human no matter what they do and who they are. Treating people with functional diversity as people first is about being empathetic to their needs.

A leader in vulnerability research, Brené Brown defines the differences between empathy, compassion, and sympathy. Compassion is when people recognize the struggles within each other and treat each other gently and with lovingkindness as a result.31 The power of “me too” is in part rooted in compassion. Brown defines empathy as, “the ability to understand what someone is experiencing and to reflect back that understanding.”32 Sympathy is a tool for distancing oneself from the pain of others and is antithetical to compassion and empathy. Cultivating empathy within the library involves understanding not only our own reactions to the functionally diverse but also understanding how the library as an institution reacts and then taking steps to address both the personal and organizational deficits that are identified. Reflection at the personal and organizational level can be a powerful tool in generating understanding and empathy. In particular, mindfulness meditation has become a cornerstone for many people and organizations that are embarking on a reassessment of where they are, their strengths, values, and current foibles. Jon Kabat-Zinn, the “Father” of mindfulness in the United States, defines mindfulness as “awareness, cultivated by paying attention in a sustained and particular way: on purpose, in the present moment, and non-judgmentally.”33 To be non-judgmental in the moment, especially when the previous experiences of the individual and/or the organization push either one of them toward a negatively judgmental stance, requires practice and intention.

Conclusion

This study, though small, revealed a width and breadth of ableism and non-accessibility that might be a major revelation for libraries that pride themselves on being ADA compliant. The experiences of the patrons clearly show that there is a lot of work that needs to be done for the library to be truly accessible and welcoming to functionally diverse people. Incorporating a greater degree of empathy, empowerment, and universal design into how we think about not only patrons, but also services, training, and buildings, will go a long way to making libraries truly accessible for all.

Acknowledgement

The author wishes to thank the Research and Publication Committee of the University Library of University of Illinois at Urbana-Champaign for their generous support in funding this research as well as graduate student Justin Smith for his tireless work.

References

1. “Disability and Health (Fact Sheet No. 352),” World Health Organization, 2014, http://www.who.int/mediacentre/factsheets/fs352/en/.
2. Merrillyn C. Gibson, “Preparing Librarians to Serve Handicapped Individuals,” Journal of Education for Librarianship 18, no. 2 (1977): 121–30.
3. Carol Mularski, “Academic Library Service to Deaf Students: Survey and Recommendations,” RQ 26, no. 4 (1987): 477–86.
4. Gerald Jahoda and Paula Faustini, “Academic Library Service to Physically Disabled Students and Faculty,” Reference Librarian 4, no. 12 (1985): 207–11.
5. Albert Scheimann, “ADA Compliance: What Are We Doing?” (master’s thesis, Kent State University, 1994), 19.
6. Samuel T. Huang, “Reference Services For Disabled Individuals in Academic Libraries,” Reference Librarian 11, no. 25–26 (1990): 527–39.
7. Kathy Lenn, “Library Services to Disabled Students,” Reference Librarian 25, no. 53 (1996): 13–25.
8. Charlie Remy and Priscilla Seaman, “Evolving From Disability to Diversity: How to Better Serve High-Functioning Autistic Students,” Reference & User Services Quarterly 54, no. 1 (2014): 24–28.
9. Jill Mendle, “Information Seeking Patterns: Diverse Populations,” Reference Librarian 23, no. 49–50 (1995): 105–21.
10. Amy Catalano, “Improving Distance Education For Students With Special Needs: A Qualitative Study of Students’ Experiences With an Online Library Research Course,” Journal of Library & Information Services 8, no. 1–2 (2014): 17–31.
11. Demetria Ennis-Cole and Daniella Smith, “Assistive Technology and Autism: Expanding the Technology Leadership Role of the School Librarain,” School libraries Worldwide 17, no. 2 (2011): 86–98.
12. Nahid Bayat Bodaghi and A. N. Zainab, “My Carrel, My Second Home: Inclusion and the Sense of Belonging Among Visually Impaired Students in an Academic Library,” Malaysian Journal of Library & Information Science 18, no. 1 (2013): 39–54.
13. Michael Saar and Helena Arthur-Okor, “Reference Services for the Deaf and Hard of Hearing,” Reference Services Review 41, no. 3 (2013): 434–52.
14. Christine A. Willis, “Library Services for Persons with Disabilities: Twentieth Anniversary Update,” Medical Reference Services Quarterly 31, no. 1 (2012): 92–104.
15. Sue Samson, “Best Practices For Service Students With Disabilities,” Reference Services Review 39, no. 2 (2011): 260–77.
16. Linda Lucas Walling, “Educating Students to Serve Information Seekers With Disabilities,” Journal of Education for Library and Information Science 45, no. 2 (2004): 137–48.
17. Jon Kabat-Zinn, Mindfulness for Beginners (Boulder, CO: Sounds True, 2012).
18. Irene M. H. Herold, “The Mindful Library Leader,” Library Issues 33, no. 6 (2013); Lyn Hopper, “Mindful Leadership,” Georgia Library Quarterly Spring (2010): 15–17; Kenny Neufeld, “It Takes a Community,” Journal of Library Administration 54 (2014): 426–34.
19. Kristen Mastel and Genevieve Innes, “Insights and Practical Tips on Practicing Mindful Librarianship to Manage Stress,” Libres 23, no. 1 (2013); Filippa Marullo Anzalone, “Zen and the Art of Multitasking: Mindfulness For Law Librarians,” Law Library Journal 107, no. 4 (2015): 561–77.
20. Roberta Null, Universal Design: Principles and Models (Boca Raton, FL: CRC Press, 2014) chap. 2, 2.
21. “Autism Spectrum Disorder Fact Sheet,” National Institute of Neurological Disorders and Stroke, National Institutes of Health, 2016, http://www.ninds.nih.gov/disorders/autism/detail_autism.htm.
22. Michael A. Rembis, “Yes We Can Change: Disability Studies—Enabling Equality,” Journal of Postsecondary Education and Disability 23, no. 1 (2010): 19–27.
23. Norman B. Schmidt et al., “Exploring Human Freeze Response to a Threat Stressor,” Journal of Behavior Therapy and Experimental Psychiatry 39, no. 3 (2008): 292–304.
24. Penny Andrews, “User Experience Beyond Ramps: The Invisible Problem and the Special Case,” in UXLib: User Experience in Libraries: Applying Ethnography and Human-Centered Design, edited by Andy Priestner and Matt Borg, 108–20 (New York: Routledge, 2016).
25. Null, Universal Design, chap. 2, 2.
26. Ravonne A. Green, “Empowering Library Patrons With Learning Disabilities,” Journal of Access Services 6 (2009): 59–71.
27. Saul Alinsky, Rules For Radicals: A Pragmatic Primer For Realistic Radicals (New York: Vintage, 1971), 70.
28. Bryony Ramsden, “Using Ethnographic Methods to Study Library Use,” in UXLib, 9–20.
29. Gail Staines, Universal Design: A Practical Guide to Creating and Re-Creating Interiors of Academic Libraries for Teaching, Learning and Research (Oxford: Chandos, 2012).
30. S. Horton and W. Quesenbery, A Web For Everyone: Designing Accessible User Experiences (Brooklyn, NY: Rosenfeld Media, 2013).
31. Ken Robinson, quoted in Brené Brown, Daring Greatly (New York: Avery, 2012), 188.
32. Brené Brown, Rising Strong (New York: Spiegel & Grau, 2015), 155.
33. Ibid., 156.
34. Jon Kabat-Zinn, Mindfulness for Beginners (Boulder, CO: Sounds True, 2012), 1.