Résumés
Abstract
Using semi-structured interviews with disabled archival users and building on the emerging field of critical access studies, this article illustrates the ways in which archival spaces and their in/accessibility affectively impact disabled people. Interviewees describe how they experience barriers to accessibility not only at a basic, architectural level – of not being able to get into a building or archives room – but also through archives’ policies and expectations regarding the ways in which archival work is done. The way that accessibility is implemented, even beyond legal compliance, greatly impacts the extent to which disabled researchers feel they belong in archival spaces. Inaccessibility, this research shows, produces a sense of unbelonging; the deprioritization of disability both as a subject or organizing category and as an identity of a potential researcher, shows disabled people that they do not belong in archival spaces, and this is further complicated for multiply marginalized disabled people. By examining the multifaceted ways that disabled people experience inaccessibility, this article focuses on the “emotionally expensive” aspects of inaccessibility to emphasize the ways in which barriers compound and accumulate and can prevent disabled people from accessing our own histories. These findings demonstrate how central accessibility is to disabled people’s lives: it is almost impossible to talk about our experiences of archival materials and history without discussing how we navigate the multiple barriers to accessing them.
Résumé
Utilisant des entrevues semi-structurées avec des utilisateurs.trices avec incapacité et construisant sur le domaine émergent des études critiques de l’accès, cet article illustre les manières dont les espaces archivistiques et leur in/accessibilité ont un impact sur les personnes avec incapacité. Les personnes interrogées décrivent comment elles expérimentent les obstacles à l’accessibilité, pas uniquement au niveau de l’architecture des bâtiments et de la difficulté d’accès aux édifices et aux salles de consultation, mais également en ce qui concerne les politiques archivistiques et les attentes face aux procédés et pratiques archivistiques. Au-delà des balises légales, la manière dont l’accessibilité est mise en oeuvre a un impact significatif sur la mesure dans laquelle les chercheurs.euses se sentent les bienvenu.e.s dans les espaces archivistiques. Cette recherche démontre que le manque d’accessibilité produit un sentiment où les personnes avec incapacité ne se sentent pas accueillies. La dépriorisation de l’incapacitisme, à la fois comme sujet ou catégorie organisationnelle, ainsi que comme un marqueur identitaire des chercheurs.euses potentiel.le.s, démontre que les personnes avec incapacité ne sont pas considérées et n’ont pas leur place dans les lieux archivistiques. Ce constat est complexifié davantage pour les personnes avec incapacité multimarginalisées. En examinant les facettes multiples qu’expérimentent les personnes avec incapacité, cet article met l’accent sur la portée émotionnelle de l’inaccessibilité en évoquant les manières dont les barrières se constituent et s’accumulent. L’article souligne ainsi que ces barrières empêchent les personnes avec incapacité d’accéder à leurs propres histoires. Les résultats de la recherche démontrent comment l’accessibilité est au coeur de la vie des personnes avec incapacité. Il est pratiquement impossible de parler de nos expériences avec le matériel archivistique et de nos récits sans discuter de la manière que l’on doit naviguer les multiples barrières qui empêchent leur accès.
Corps de l’article
Introduction
I was tempted to open this article by sharing one of many experiences of archival inaccessibility – of finding a lack of elevators, of sitting in reading rooms in pain, of failing to even enter a building. Disabled people are so regularly confronted with inaccessibility, it is almost unremarkable. I would rather start by highlighting how access is magical, access is creative, and, as Mia Mingus, Alice Wong, and Sandy Ho tell us, “Access is love.”[2] Participating in events such as Disability Day of Mourning, virtual and in-person performances by Sins Invalid, and other access-centred and disability-led events reminds me that access is a form of care, of bearing witness to one another, of love. Access can be more than utilitarian: alt-text can be poetry,[3] audio descriptions can be an art form, captioning can build relationships between people and technology,[4] and access intimacy – “that elusive, hard to describe feeling when someone else ‘gets’ your access needs” – can profoundly shape relationships.[5] Mingus states that “access for the sake of access is not necessarily liberatory, but access for the sake of connection, justice, community, love and liberation is.”[6] Accessibility is not just about physical navigation but is an emotional, affective experience that is tied to feeling a sense of belonging, feeling valued, and being cared for.
It is against this background of crip wisdom, disability communities, and loving, caring access that I investigate and bear witness to the ways that access is implemented in archival spaces. Utilizing interviews with disabled people, this article trains a critical lens on the affects of accessibility, illustrates disabled people’s relationships to space and place, and shows how archival spaces and their in/accessibility are also political. This article asks, How do disabled researchers experience accessibility and/or inaccessibility in archival spaces? and, What affects, emotions, and feelings around in/accessibility impact disabled researchers’ archival experiences?
This article discusses three main findings that emerged around the concept of access: First, the disabled archival users whom I interviewed highlighted the barriers to accessibility they experience not only at a basic level – of not being able to get into a building or archives room – but also through archives’ policies and expectations about the ways archival work is to be done. Second, interviewees described the impacts of the way accessibility is implemented, even beyond compliance with the Americans with Disabilities Act (ADA), on how they feel about how disability is valued by archives. These two aspects build toward the final finding: the deprioritization of accessibility and disability produce a profound sense of unbelonging in archival spaces. By illustrating these facets of accessibility, this article connects the affective impacts of materials to spaces and highlights the emotional expense of continually navigating inaccessibility, which comes at a great cost to disabled archival users. These findings demonstrate how central accessibility is to disabled people’s lives; it is almost impossible to talk about our experiences of archival materials and history without discussing how we navigate the multiple barriers to accessing them. Through this work, I bring the shortcomings of archival access to the fore, connecting crucial conversations from disability studies around access and the politics of space with archival conversations to emphasize how inaccessibility accumulates for disabled archival users.
Literature Review
Accessibility has been constructed through various lineages and is currently multiply understood by different people. Access has been constructed, as this section outlines, through activism, legislation, and design principles that range from simply “good design” to design specifically by and for disabled people. To note, much of the literature on accessibility discusses access in relation to physical barriers and compliance-based models rather than the more expansive versions that surface in my research.
Accessibility, Legislation, and Design
From disability activist interventions such as “smashing sidewalks with sledgehammers and pouring new curb cuts with bags of cement or asphalt”[7] to protests such as the 1977 demonstrations at the United States Department of Health, Education, and Welfare (HEW) offices (otherwise known as the Section 504 sit-ins) and disabled makerspaces, disabled people have propelled change around access to spaces. For example, in the 1960s, Robert Payne and the Disabled Miners and Widows led a wildcat strike against hazardous working conditions as well as discrimination and mistreatment of disabled miners, addressing issues of race, class, and labour.[8] In the 1970s, disabled activists propelled the independent living movement, which advocated for self-determination (instead of rehabilitation) for disabled people and access to housing and care. This activism shaped US legislation around accessibility, such as the Architectural Barriers Act of 1968, the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act (IDEA) of 1975, and the Fair Housing Amendments Act of 1989.[9]
Building on previous legislation and activism, the ADA of 1990 is arguably the most well-known US federal legislation for disabled people that incentivizes accessible public spaces. The ADA requires that public spaces – from government buildings to educational settings (including housing), hotels, and public transportation – have “a path of travel” to access many public facilities. Such means of architectural access include accommodations such as wheelchair ramps, elevators, lifts, railings, braille signage, and visible alarm systems, which make public spaces more accessible to disabled and d/Deaf communities. The ADA extended anti-discrimination protection to individuals with “mental impairments”[10] in attempts to provide more opportunities for employment, education, and housing to disabled people who faced discrimination beyond physical barriers. Also taking shape during the 19th and 20th centuries, the Canadian disability rights movement advocated for access to public spaces and the acknowledgement of discrimination of disabled people.[11] People with disabilities were protected against discrimination through legislation such as the Canadian Charter of Rights and Freedoms, the Canadian Human Rights Act, and codes adopted by the provinces.[12] Disabled activists and organizations propelled provincial legislation such as the Loi assurant l’exercice des droits des personnes handicapées (Act to secure the exercise of the rights of handicapped persons), adopted by the National Assembly of Quebec in 1978,[13] and the Accessibility for Ontarians with Disabilities Act (AODA), adopted in 2005.[14] More recently, the Accessible Canada Act, which aims for “the realization . . . of a Canada without barriers, on or before January 1, 2040,” was developed and applies to federal competence; however, it is not universally applied across Canada[15] (differing from the ADA’s wider application across the US). While this is not an exhaustive history of either US or Canadian disability rights movements, it shows how legislation and activism have resulted in more opportunities for disabled people in education, employment, housing, public transportation, and participation in everyday activities.
While fostering improved and increased accessibility, much legislation around accessibility faces criticism in its application. Ruth Colker observes that “the Supreme Court has interpreted the ADA narrowly, often disappointing the disability rights community.”[16] Disability rights lawyer Yvonne Peters critiques the implementation of the Canadian Charter of Rights and Freedoms, noting that “arguably, to date, the recognition of disability equality rights under the Charter has been more symbolic than substantive,”[17] and Mary Ann McColl et al. point out that the Charter has “only modest direct effects on the legal infrastructure of Canada.”[18] The Accessible Canada Act is limited in its application to federal competence, which does not apply to many provincial policies and programs. Others have shown the limits of legislation; for example, employers nonetheless discriminate against hiring people with mental disabilities,[19] and students with cognitive impairments can be denied accommodations, especially if there is “no reasonable way to accommodate their functional limitation without lowering academic standards.”[20] Although legislation has transformed some public spaces and systems, as Sarah Parker Harris et al. remark, “A recent survey of individuals with disabilities . . . found that a majority (61%) of people surveyed indicates that the ADA had made no difference in their lives.”[21] Addressing accessibility in higher education, Corinne Lajoie critiques the way that, “by prioritizing individualized, ‘outcome-based’ solutions, we are ill equipped to recognize this complexity.”[22] As these arguments show, legislation – including rights-based efforts (e.g., the ADA, the Charter, and Canadian provincial human rights codes) and accessibility standards (e.g., the Accessible Canada Act) that address different architectural, educational, and disability- related human rights – often falls short. Many public spaces, including restaurants, bathrooms, educational settings, public transit stations, and buildings, remain inaccessible for disabled people.[23]
Disabled people have also propelled design and creative solutions for access to spaces that contrast these rights- and standards-based frameworks. For example, as Aimi Hamraie traces, the design philosophy of Universal Design provided aesthetic ways to foreground disability within design practices. Universal Design is less a strategy for getting from point A to point B and more a way of thinking creatively about how spaces are used and designed. Spaces such as the Ed Roberts Campus in Berkeley, California, were designed using the principles of Universal Design to emphasize usability for disabled people while also creating an aesthetic experience.[24] Perhaps the most ubiquitous illustration of Universal Design is the curb cut – a design originally intended to make sidewalks more accessible for wheelchair users that also benefits people with strollers, walkers, and rolling luggage. This design framework has also been applied to ergonomic, “barrier-free” products such as the Cuisinart blender and the OXO vegetable peeler. However, as Liz Jackson, Alex Haagaard, and Rose Eveleth point out, many brands claim to innovate products for disabled users while offering little, if any, meaningful access to such products.[25] Companies, local governments, and community organizations often extract information from the very disabled people their marketing then claims the products were created for. For example, the marketing of the OXO peeler, while citing Betsey Farber as the “inspiration” for the product, erases her involvement in the design.[26] The performance of accessibility and inclusion – what Stacey Park Milbern calls “access washing” – also directly impacts spaces: it can not only fail to meaningfully value disabled people but can also be used to justify harms against others, such as when a “city government implement[s] anti-homeless measures under the guise of making streets more accessible to people with disabilities.”[27] Resisting ableism through Disability Justice, however, as Milbern says, is “about turning towards each other and figuring out how to collectively create an environment where everyone, especially those historically excluded, can participate.”[28] Access – whether the design of everyday objects, the ways that spaces are configured, or the intermingling of the two – has a long and complex history of disability activism, legislation, and design by and for disabled people, which has led to spaces being more accessible today.[29]
Accessibility and Archives
Archives in the US and Canada, like many public spaces, tend to rely on legal frameworks such as the ADA to provide standards for access to disabled patrons. The ADA and accessibility guidelines such as the Web Content Accessibility Guidelines have laid the foundation for basic changes in the accessibility of many libraries, archives, and museums and the materials they hold. Yet scholars and activists have identified that accessibility is unevenly implemented among libraries and archives, where some may “have an interest in both complying with and shaping legal requirements that relate to library services and access to information,”[30] whereas others fail to comply with basic ADA guidelines. Historian Angela Gallagher points out that
today, ADA compliance within archives primarily extends to individuals with visible physical disabilities, although this too can be uneven. Standard accommodations include wheelchair ramps and accessible entrances, bathrooms, and seating. Some archives, such as those run by the National Archives and Records Administration, offer some materials in braille or other formats accessible to people with visual disabilities, but many do not. Researchers who are deaf or hard of hearing may encounter communication obstacles in smaller archives that lack interpretive staff.[31]
Online and analog archival collections vary greatly in accessibility; some archival spaces are located in physically inaccessible buildings, digital records are not often described for blind or low-vision users, and accommodation policies vary. For example, Library and Archives Canada lists information about building accessibility features such as ramps, elevators, and restrooms as well as available equipment such as adjustable tables, screen enlargers, and other software for the Ottawa service point.[32] The US National Archives and Records Administration’s accessibility policy offers options for patrons to request American Sign Language (ASL) interpreters, Communication Access Realtime Translation (CART) transcription services, wheelchairs, and other “reasonable accommodations” in order “to provide individuals with disabilities equal access to electronic information and data comparable to those who do not have disabilities unless an undue burden would be imposed on the agency.”[33] Such interpretable policies might leave potential visitors with questions about what types of accommodations, other than those listed, are possible and “reasonable.” The Society of American Archivists (SAA) hosts multiple accessibility resources online, but it is unclear which archives implement them and to what degree. And other archives, especially those that lack robust funding to build accessibility features, remain ADA non-compliant and/or lack accessibility information all together. Whether due to lack of knowledge, compliance, or funds, archives have varying levels of accessibility for disabled users and contributors.[34] Highlighting these inconsistencies points out how navigating accessibility policies, figuring out access possibilities, and understanding accessibility outside of physical accommodations might be barriers to access in and of themselves.
Affect and Archival Spaces
Archives, as much recent archival studies literature has shown, affectively impact their users. In their foundational research on the topic, Michelle Caswell, Marika Cifor, and Mario H. Ramirez investigate the affective impacts of community-based archives on historically marginalized communities. Archives can perpetuate “symbolic annihilation” by erasing or misrepresenting marginalized communities, but they can also positively impact the communities they represent. When they were represented in a meaningful, nuanced way, participants described feeling a sense of epistemological, ontological, and social belonging – what the authors term “representational belonging.”[35] This work shows the complexities – for various communities marginalized or minoritized by race, class, gender, and sexuality – of the impacts of their representation and involvement in community-based archives.[36] And I have recently built on this work to show the complex relationships of disabled archival users to their representation in archival materials.[37]
In a later study, Caswell, along with Joyce Gabiola, Jimmy Zavala, myself, and Cifor, highlight how experiences of archival materials are also tied to the ways users experience space.[38] Through focus group interviews at multiple community archives sites across Southern California, we show how the physical spaces of archives can reinforce representational belonging as “space is a key component of epistemological, ontological, and social impact.”[39] The spaces of community archives can “be symbols of survival, homes and extensions of homes, and politically generative spaces, where there is a possibility for personal, affective responses to representation to be transformed into collective political action.”[40] Along these lines, Jamie A. Lee proposes “radical hospitality,” especially within community archives, as a tool for enacting generosity within archives, as it “is a promise for a newly imagined way of being in and with non-dominant peoples, lived and living, dynamic histories, and distinct bodies of knowledge and evolving bodies.”[41]
Archival materials, spaces, and policies can also negatively impact users. Jarett Drake notes that archival reading rooms can be spaces of surveillance with strict guidelines for how patrons should behave: “How oppressive it is of archivists to expect users to consult documentary records that chronicle the peaks and valleys of humanity – love, hate, war, abuse, joy, humor – and display no auditory or affective response.”[42] While Drake’s critique highlights the inherent whiteness of and normative ways one is expected to act in archival spaces, this example also emphasizes that such guidelines are also a form of ableism, enforcing sanist and audist norms of behaviour. Expanding further, Ryan Cartright shows how one’s experience of archival material is shaped through all of the interactions that happen before and after one visits. Through an account of navigating cross-country travel and inaccessible public transit and planning access and accommodations, Cartwright tells an “archive story that barely takes place at an archive,” as access to archives is shaped through many surrounding factors.[43] While much of this literature addresses the physical dimensions of accessibility, spaces and materials can also be cognitively, mentally, and otherwise inaccessible for disabled people. From the expected modes of reading room comportment that Drake emphasizes, to the necessity of navigating anxiety, stress, accessible travel, and sensory stimuli and the feeling of being “out of sorts” that Cartwright writes about, archives can be rendered inaccessible in many ways. Archival representation, spaces, and uses, and everything surrounding an archival visit, can all impact users’ affective experiences of materials and produce barriers to access.
Given the uneven and unequal ways archival spaces have implemented accessibility and the ways archival spaces are experienced affectively, this article investigates how accessibility impacts disabled people’s experiences in archival spaces. Centring the affects, emotions, and feelings of disabled researchers experiencing accessibility and/or inaccessibility in physical archives, this article brings to light the ways that archival decisions and design shape how disabled people navigate, use, are prevented from using, or even avoid archives.
Methods
Through semi-structured interviews with 10 disabled archival users in the US and Canada, with a wide array of disabilities and intersecting identities, this research centres disabled people’s voices. Interviewees met the following criteria: (a) they self-identified as disabled; (b) they had conducted research in archives and found records about people with disabilities; and (c) they were at least 21 years of age.[44] The interviews were conducted by video, phone, and in person, which prioritized interviewees’ accessibility needs and allowed for long-distance communication. With the consent of each participant, each interview was audio recorded, transcribed, and then coded and analyzed using coding procedures developed in grounded theory, such as open coding, axial coding, and selective coding, to allow themes to emerge from the data.[45] While the questions for this research originally centred on disabled people’s relationships to archival material and representation, the theme of accessibility emerged organically and unintentionally in each interview.
Consent is central and ongoing with this research: each participant had the opportunity to be quoted anonymously or by name and specified their choice on a consent form prior to the interview. We then went over the consent form at the beginning of the interview, when they could ask questions, and I have continued to obtain consent for all published works on this research. Each participant had an opportunity to read this article, change how they are cited (anonymously or by name), and suggest edits to the article. Additionally, I asked each participant to describe their positionality, and I use these descriptions in this article.
This research is epistemologically and pedagogically rooted in my community/ies. As a white, queer, non-binary Disabled person working in archives, I conduct this research with and for disabled communities, using an interpretivist paradigm, where I am part of the social situations I am reporting on.[46] It is an honour to participate in community research; to elevate the words, knowledge, and experiences of disabled people, who have historically been excluded from academic spaces; and to write this article, which emphasizes the importance of disabled knowledge. Yet while I share some axes of identity with the interviewees, they also hold a variety of racial, ethnic, age, size, gender, sexuality, illness, and disability identities, many of which differ from my own. I therefore try to honour these differences – disabled people are not one singular community – and respect the nuances that emerge among the findings, which are not necessarily applicable to all disabled people.
Findings
While many findings emerged through the interviews, this article discusses three main findings around the experiences of access. First, participants described archives as inaccessible on a basic architectural level, through stairs, reading room configurations, required academic affiliation, and hours of operation. Second, interviewees indicated that disability – as an organizing category and as an identity of a potential researcher – was devalued by archives. Third, their experiences of in/accessibility, combined with their perceptions of the ways disability and disabled people might be devalued or deprioritized, produced a profound sense of unbelonging in archival spaces.
Finding 1: Experiencing (Some) Logistics of Archival In/Accessibility
Interviewees described difficulty accessing the physical spaces of archives at a fundamental level, highlighting the lack of basic physical access. Hard-of-hearing biracial archivist Michelle Ganz described the resistance to accessible changes in archival spaces she has experienced, remarking, “It was almost 30 stairs to get to the second gallery. And when I pointed out that, when the building was built, that wasn’t an issue, but it’s an issue now and we could get a chair lift, and they didn’t want to fix the problem because that meant that they had to acknowledge that it was a problem.”[47] Similarly, Megan Suggitt, a disabled, white undergraduate student, remarked that when researching the history of a former asylum, Huronia Regional Centre, at a local archive, “the documents are inaccessible: you have to climb up the stairs to get to the room and there’s no elevator there . . . they’re kind of just hard to find in general.”[48]
Archival research also felt inaccessible due to the spatial limitations of the ways in which archival work is often done; many illustrated the constraints of reading room spaces and the physical toll of archival research. Stefan Sunandan Honisch, a sessional lecturer in the Department of Theatre and Film at the University of British Columbia and a biracial disabled scholar, educator, and musician, described the inaccessibility of archival spaces:
My own more limited experience [of] actually going to local archives myself . . . has proved tricky because I use a wheelchair. And so, moving around and within an area or space or being able to position myself, even something [like] being able to position my wheelchair close enough to a table that I can read through a folder of newspaper clippings or a . . . folder.[49]
Also describing their experiences with reading room tables, white, disabled non-binary scholar Jess Waggoner outlined how
your body’s automatically positioned in these particular ways. And if those are positions that exacerbate pain, then you’re just going to be in pain for two weeks. So for me, those were some of the main issues. . . . But [my issues] have primarily revolved around chronic pain and hunching over materials and not being able to put the materials where I need them to be for me to comfortably engage with them because they are such rigid notions of how the materials [should] be placed and who should be handling them.[50]
Many of the archives that interviewees visited had fundamental accessibility issues that prevented them from beginning or continuing research.
Adding to these examples of blatant inaccessibility, interviewees highlighted some ways that archival research was rendered inaccessible due to reading room policies. Disabled, white lawyer Lili Siegel describes the restrictive nature of one archives’ policies: “You are not allowed to bring your laptop [so] there’s no easy way to get back to where you were [in your research] once you’re done [for the day].”[51] Cody Jackson, a white, disabled, gay graduate student, points out the inaccessibility of archival spaces created through other archival policies: “At the Ransom Center, they didn’t let you have drinks in there, which, I totally get it – some of us were handling very, very old material. But for me, for instance, my mouth gets very dry with my medicine and with social interaction . . . so for me, I had to keep walking back outside, [then back] inside to get drinks.”[52] He continued:
Another example would be that they limit you to like one folder at a time. And so, I’d have to go out; I’d have to walk back and forth to this table. And for me physically, that’s not a problem, [but] cognitively it is because it takes my focus away. . . . I think that would also be a problem because going back and forth, back and forth is not conducive to focus or accessibility.[53]
Participants not only spoke about the accessibility issues within archival spaces but also highlighted how these facets were magnified through other factors such as financial limitations, hours of operation, or academic affiliation. Honisch describes the challenges involved in travelling to conduct archival research: “I often did preliminary research from a distance in terms of interacting with archives. Because of my own situation as a disabled person, long-distance travel poses a bunch of challenges.”[54] Others noted that disabled people could be excluded due to financial constraints. Travis Chi Wing Lau, a gay, disabled poet and scholar of colour, describes how his archival research was limited: “Due to the nature of my disabilities and my sort of financial limitations I couldn’t go do too much archival work. . . . So I wasn’t able to do too much. . . . I was there for maybe a few weeks, and I coupled it with a conference trip.”[55]
Along these lines, Suggitt described how, due to the limited hours of operation, she felt pressure to work long stretches of time: “I spent three hours at least just sifting through these documents until they [the archives] closed, because the room is only open for three hours, like once or twice a week. So it’s really awful to access it, and you have to make an appointment, and that’s what I mean, like it’s really inaccessible.”[56] White, queer disability rights activist and author Corbett Joan OToole emphasized her lack of access to academic spaces because of institutional affiliation, remarking, “I don’t even know now that I could get in [to the archives] because I don’t have a Cal ID . . . to find information that’s maybe not technically behind a firewall but functionally is behind a firewall. So, I have a kind of patched together history.”[57] Such comments illustrate the barriers to accessibility that disabled archival users experience not only at a fundamental level – e.g., barriers to being physically able to get into a building or archives room – but also through archives’ policies and their expectations regarding how archival research is to be done.
This first finding illustrates the multiple barriers to archival access for disabled researchers. It is important to note that these barriers are not necessarily unique to disabled people; many people face financial limitations, struggle with hours of operation, and/or lack the academic affiliation necessary to use certain archives. However, these aspects are exacerbated for disabled people, who navigate other systems of oppression that can compound such issues.[58]
Finding 2: Perceiving the De/Valuing of Disability
Even when archival spaces were somewhat accessible to certain interviewees, the physical locations of the archives and accessible entrances had a deep emotional impact on interviewees’ perceptions of the ways disability is understood and valued in institutions. Suggitt remarked that materials on the Huronia Regional Centre were difficult to physically locate, as they were kept in a separate and inaccessible room within the archives:
I really feel like they are hidden. I had to ask specifically for the Huronia Regional Centre records . . . and even the lady that was working that day that I went up to, she’s like, “Oh, those are usually kept in the back. No one usually asks for them.” So that was really surprising to me. . . . It’s tucked away where no one can see; no one knows about them. I honestly would say I don’t think anyone except for me and the survivors would really go to that room to actually research Huronia Regional Centre. Because when I mention it to people in Orillia, they have no idea that the building was a former institution.[59]
Suggitt’s words illustrate how, although she was able to physically access the room where materials were kept, the inaccessible location framed how she understood disability history to be devalued. Siegel similarly made note of the spatial configuration and how an archives’ location might impact how disabled people find that history: “Often, you go down the six hallways and then down this ramp and around, like around somewhere. And why is this archive tucked away, and what are some of the access implications of that?”[60] As this quote exemplifies, even if spaces are physically accessible to a particular researcher, their locations can communicate that disability might not be valued.
The physical locations of accessible entrances also speak volumes about disabled interviewees’ feelings of being respected, understood, or prioritized by institutions. When trying to access an inaccessible space, Siegel was told, “You can go, and you can use the freight elevator,” and found that “it was at the end of this hall that was lined with dumpsters and garbage. And I got there, and I was like, ‘I can’t. I can’t do that. I can’t get on this elevator.’ And my mom thought that I was scared of the elevator itself. It was like, ‘No . . . I’m not afraid, I’m a human being.’”[61] Along these lines, Black disabled professor of English Therí Pickens described the affective impact of the locations of accessible entrances in academic institutions, broadly, which were frequently not only in separate areas but often near loading docks and trash pick-up areas:
Somebody said something to me about access to one of the current science buildings, and I was like, “Oh, you mean where the trash cans are?” And I got a couple of blank stares and a few puffs and sighs of indignation, and I wanted to be like, no, “There’s nothing that reminds me more that I am part of the trash at the institution than being told that my entrance is where the trash is.”[62]
She continued, drawing throughlines between disability and racial segregation:
I teach in the oldest building on campus, which means that the stairwell allowed for you to retrofit an elevator in there, and when I teach Jim Crow, I am always reminded that I have to enter through the back of that building. What must it feel like for me as a Black woman to enter through the back of a building and then go in there and talk about separate but equal water fountains and bathrooms?[63]
Pickens highlights not only the parallel histories of racism and ableism but also the convergence of the two for her as a disabled Black woman navigating academic spaces: the location of accessible entrances emphasizes the devaluation of disability, which parallels and intertwines with histories of racism.
Additionally, interviewees connected the spatial configurations of archives to the materials on disability. They drew a parallel between inadequate access to archival spaces and the way materials on disability were treated, which greatly informed the extent to which disabled people felt valued. OToole demonstrated the importance of having materials on disability, stating, “For disability groups . . . that stuff is like so hard to find because you have to find a ‘Why would somebody care enough to write it down?’”[64] Suggitt remarked on seeing how materials on disability were treated: “I just got handed the box, like, ‘here you are.’ And it was just really frustrating. It was just literally in, like, a little shoebox, and it was just awful. I just couldn’t believe it.”[65] Similarly, Waggoner articulated how they feel when they handle materials that have not been cared for:
I feel like when I literally have a material that’s disintegrating, and my gloves – I feel like that history is disintegrating, that care is disintegrating, whenever it was. And so, there is this material relationship to the archive when . . . there’s no attempt to preserve something. . . . I think that access, a true attention to accessibility, is just as important to me as a, like, cognizance of or a presentation of your disability archive.[66]
These quotes emphasize a deep connection to access and care; even if materials on disability are accessible, their treatment could reinforce feelings that disability is not valued by an archives.
Furthermore, interviewees described feeling deprioritized through the ways that access was implemented on an individual basis. For example, Honisch highlighted the subtlety of exclusion:
The archivists and people in charge of special collections . . . were extremely helpful, once I made it known that I might need help accessing certain materials. . . . So in that sense, I wouldn’t describe my experiences as straightforwardly negative in the sense of feeling like certain things weren’t available to me or possible for me as a disabled researcher. But I guess what it did is bring me to an even deeper awareness of what it means to be a disabled researcher in spaces that don’t necessarily exclude disabled bodies in overt ways, but they weren’t necessarily designed with lived experiences of disability in mind.[67]
Pickens remarked on the emotional toll it takes to name disability-related issues: “Naming it when it’s not outrightly named as such or calling attention to it when it appears that it’s sort of floating there and no one wants to deal with it is – it’s costly. It’s expensive. It’s emotionally expensive.”[68] As Lau illustrates, the practice of treating disabled patrons on a case-by-case basis can have impacts for first-time disabled archival visitors:
What I think is the case in many archives is that accessibility training and accessible pedagogy is not a priority, or it’s often framed as, “Oh, that is . . . the particular need of that class,” rather than a universal design concept where it’s like, “How do we maximize accessibility for all students that come in here,” many of whom have never been [to the archives], are like me and feel alienated by it.[69]
These quotes surface some of the affective impacts of the inaccessibility of archival spaces: how hidden or difficult-to-access archival spaces produce a sense of feeling deprioritized. The locations of materials that document disability history, the placement of accessible entrances, as well as the individualization of accommodations – which place responsibility for naming and acquiring accessibility on disabled patrons – tell disabled people how much they are valued (or not) by an institution.
Finding 3: Feeling Personal Belonging
Another theme that emerged was how interviewees regarded themselves in archival spaces – how disability and accessibility generally informed their personal levels of comfort in navigating archival research. Many disabled archival researchers described being aware of how they were perceived in archival spaces – often feeling out of place. For example, Ganz described her concern around being perceived as disruptive when working with audio collections and explained that she pre-emptively apologizes for potential disruptions:
I do worry a lot, especially when I’m dealing with collections that have audio, because even before I had the hearing aids, even if I was using headphones, I’d have to start turning them up so loud that the noise would bleed out and cause issues in quiet areas. Or there’d be situations where I didn’t realize that the headphones had come unplugged and that everybody could hear. . . . When I go to a reading room, I have a little spiel on like, “Just so you know, I may not hear you if you’re talking to me unless you tap me on the shoulder,” and I . . . almost like apologize in advance in case I’m disruptive.[70]
Lau remarked on his perception that
you’re there to use these resources out of the goodness of this archives’ heart, and you’re there to do your job and get out. And it didn’t feel like a place of exploration. It didn’t feel like a place where I can make mistakes, I could accidentally mishandle something, or ask for something that I needed. You could pull something, but in fact you didn’t make a request to a librarian. You just did it online and then the number would appear, and it felt very depersonalized.[71]
He continued, describing the impacts of feeling out of place:
I sometimes ask myself why I’m not more of an archive-heavy scholar; my instinct is not to do archival work. . . . I think it’s also from these experiences where I feel like the archive is often a financially and physically inaccessible space and a place where I see myself as a burden. . . . And I think that that feeling of being a burden is such a defining experience of being disabled in sort of any institutional space.[72]
Pickens characterized the complexity of all of these accessibility issues and the impacts on her sense of belonging in archival spaces by stating,
Phenomenology, in a Merleau-Ponty sense, talks about what it means to be an objective subject and a subjective object: one who is simultaneously seen and experienced by others, who is also, then, seeing and experiencing . . . having that experience of being at these long tables in the Huntington reading room in front of pieces of paper and my laptop, realizing that no one was watching me and yet everyone was aware I was there, aware that I was looking at a mirror in this evidence, and it was sort of looking back at me. And that, then, in 30 minutes or so, I would need to go pee in a restroom that was technically accessible but didn’t meet my needs.[73]
Pickens’ words illustrate how historical materials, accessibility, and spatial configurations converge in her experience of this reading room. Similarly, Lau outlines the complexity of not belonging in archival spaces as a disabled person of colour:
I remember being there, and my first reaction was, I feel like I don’t belong here. And at the time, it was very much in terms of race because I was the only Asian person in the room – and my entire class was all white people, even the professor – and I’m like, “Am I supposed to be here? Or is this a mistake?” And I remember really feeling that. This was also right around the time when my chronic pain got worse and worse. And then navigating the archive, which involved a number of stairs, a number of really sort of blatantly inaccessible places, I started to realize that maybe I don’t belong here physically: my body cannot navigate this space, or we’re looking at documents and they are arranged in a way that would require me to hunch over for long periods of time, or they would not be necessarily magnified in a way that I could see them. And there was no desire to help make that process more accessible. And that, I think, coloured my experience of archives for a very long time.[74]
For many interviewees, and specifically disabled people of colour, navigating the nuances of accessibility is complicated by being in predominantly white spaces, which greatly impacts feelings of belonging in archives.
This research has shown that many inaccessible facets of archives – from the locations of archives or collections on disability to the implementation of accessibility; the ways that materials on disability are treated; and the ways individuals have experienced inaccessibility, discrimination, or exclusion – produce a sense of unbelonging. This finding shows that interviewees experienced a plethora of ways that they could not access archives and therefore their own histories both within the archival spaces – where materials, as Suggitt points out, “are hidden” or up a flight of stairs; where policies do not allow for water, medication, or certain ways of interacting with materials; and where accessible entrances are near the trash cans – as well as within archival materials, where disability is often absent and/or not an organizing category. Such deprioritization of accessibility, flexibility, and disability produces a profound sense of unbelonging in archival spaces.
Discussion
This research highlights the various barriers disabled people encounter when conducting archival research. First, it emphasizes and affirms what many disabled people experience in day-to-day life: multiple blatantly inaccessible spaces and accessibility barriers. Despite the protection of persons with disabilities through the Canadian Charter of Rights and Freedoms, the passage of the ADA 30 years ago, and the more recent development of the Accessible Canada Act, many disabled interviewees described a lack of basic access to archival spaces. For example, Ganz pointed out the “almost 30 stairs to get to the second gallery.” Alongside disability studies literature that critically addresses access, this research disrupts the common assumption that since some legislation requires public spaces to be accessible, archival spaces are accessible to disabled researchers. It highlights not only the limits of rights- or standards-based frameworks that do not serve all disabled people but also the frequent failures to apply even the basic facets of accessibility to many archival spaces.
Second, interviewees highlighted the more nuanced ways that archival spaces and archival research can be inaccessible to disabled researchers: researchers may have to be positioned in ways that exacerbate pain, or they may not be able to lift boxes; policies may not allow laptops, assistive technologies, water, or medications; and research can be rendered inaccessible in various physical and cognitive ways. These interviews show how access often falls outside of compliance-based models; even when spaces might be considered accessible in accordance with accessibility standards, reading room furniture, configurations, and policies can nonetheless render them inaccessible to disabled researchers. Bess Williamson notes that, when visible forms of accessibility, such as ramps, are prioritized, this “could also undercut the complexity of disability inclusion by creating the perception that access was ‘done’ when ramps were built.”[75] Building on Drake’s illustration of the ways archival spaces sometimes enforce strict – ableist, sanist, and audist – ways of being and behaving,[76] this research also emphasizes the ways inaccessibility can be experienced: academic affiliation requirements; hours of operation; surveillance; policies that prevent using laptops, having water, moving bodies, making noise, or experiencing archival materials can all render archival materials inaccessible.
The treatment of access within archives impacts the ways that disabled researchers feel how disability is valued. Accessible entrances located near loading docks and trash cans tell disabled people, as Pickens states, “that I am part of the trash at the institution,” or can contradict, as Seigal notes, that “I’m a human being.” And when archival spaces containing materials on disability are, as Suggitt describes, “tucked away where no one can see, [and] no one knows about them,” or when materials are not cared for, it can tell disabled people, as Waggoner describes, “that history is disintegrating, that care is disintegrating.” Accessibility, location, and care all impact the ways disabled people develop a sense of belonging in archival spaces, as interdisciplinary artist and designer Emily Sara articulates:
Accessibility means a lot more than having a ramp with a 1:12 slope ratio into your space (though we’d obviously really appreciate it if you did have that). Accessibility means that you want us to be there – that we’re welcome, and we have a sense of belonging. Accessibility means having the representation of mentors that are a part of our community (e.g., Did you have any disabled teachers or professors?). Accessibility means not having an entrance that’s at the back of the building where you have to navigate past dumpsters and trash cans in order to find a cut curb.[77]
Echoed in this research, these nuances of inaccessibility show disabled interviewees how disability – in all of its embodied, complex, multimodal realities – might not be valued, foregrounded, or considered in archival materials and in the spaces in which they are experienced. Even if spaces are physically accessible, the implementation of accessibility informs the extent to which disabled people feel valued by institutions, feel a sense of belonging, or feel as if they are a burden for asking for accommodations.
Based on these findings, I extend Caswell, Cifor, and Ramirez’s use of symbolic annihilation to include the affective impacts of not only the contents of archival material (or lack thereof) but also the experiences in archival spaces; these two aspects are deeply intertwined. One can feel erased through the ways that spaces are constructed, policies are implemented, and materials are treated. And as these data show, the lack of archival representation, explicit description of disability, digitization of records, and other archival interventions is reinforced through spatial inaccessibility. The deprioritization of disability both as a subject or organizing category and as an identity of a potential researcher deeply impacts disabled people’s sense of belonging in archival spaces. While accessibility efforts such as retrofitting or altering physical spaces, digitizing records, and processing collections in detail require labour and financial investments that archives often lack, the lack of such efforts reflects the deprioritization and erasure of disabled people and their resulting sense of unbelonging.
These findings resonate with concepts of access that are intertwined with affective and phenomenological facets of space. For example, Margaret Price describes kairotic space, “the less formal, often unnoticed, areas of academe where knowledge is produced and power is exchanged.”[78] Lajoie, describing an “approach to the phenomenology of belonging [that] begins with these moments when bodies and worlds do not synch up,” highlights how “ableist lifeworlds generate serious disorientations for disabled people that seriously impede the experience of belonging.”[79] Aligned with these expansive analyses of access, this research shows how archives are spaces of power not just through the materials they hold but also through their spaces – which can exclude or alienate disabled people through physical infrastructures and also through “the beliefs, discourses, attitudes, and interchanges that take place there.”[80]
This research aligns with the field of critical access studies, which not only starts with the assumption that access is already important but also foregrounds a critical analysis of interlocking systems of power. Aimi Hamraie emphasizes components of critical access studies, asserting the importance of asking questions such as, “Who is the presumed normate user? . . . and then the critical question is, What systems of oppression shape our answers to this question?”[81] Hamraie’s definition of critical access studies is reflected within the interviews, where accessibility is not experienced in isolation. The ways that spaces are configured communicate institutional values to these disabled participants that are felt through different facets of their identities. Interviewees reflected on the ways they were perceived through gender, sexuality, and race. Lau, for example, described feeling “like I don’t belong here. And at the time, it was very much in terms of race because I was the only Asian person in the room. . . . And then navigating the archive, which involved a number of stairs, a number of really sort of blatantly inaccessible places, I started to realize that maybe I don’t belong here physically.” Pickens likewise drew on the complexity of Blackness and disability, asking, “What must it feel like for me as a Black woman to enter through the back of a building and then go in there and talk about separate but equal water fountains and bathrooms?”[82] Access is not just a single-axis identity issue, nor is it simply logistical; access is cultural, relational, and inter-informed with other forms of institutional exclusion. This research highlights a crucial shift from the social model of disability – which emphasizes discriminatory attitudes and inaccessible built environments – to Disability Justice and crip-of-colour-critique frameworks – which prioritize not only cross-disability solidarity but also the interconnectedness of ableism, racism, sexism, white supremacy, homophobia, ageism, and fatphobia.[83]
This research illuminates how the affective impacts of archival spaces compound: feelings of belonging are not experienced in isolation but accumulate and intertwine. Not only did interviewees describe the compounding sense of unbelonging through their multiple intersecting identities that are “made to feel ‘out of place,’”[84] but also their words show how inaccessibility adds up within archival spaces. As many disabled people experience in their day-to-day lives, many spaces – not only archives but also public sidewalks, apartment buildings, university campuses, and libraries, to name a few – are still inaccessible on a fundamental level. Lau articulates that “that feeling of being a burden is such a defining experience of being disabled in sort of any institutional space,” where one can feel an obligation to, as Ganz articulates, “apologize in advance.” And accessibility, as Honish articulates, brings “an even deeper awareness of what it means to be a disabled researcher in spaces that don’t necessarily exclude disabled bodies in overt ways, but they weren’t necessarily designed with lived experiences of disability in mind.” While much critical literature around the impacts of access focuses on higher education,[85] this research extends such conversations, which Jay Dolmage describes as “academic ableism,”[86] into archives, where multiple layers of exclusionary barriers to academic institutions (historically have and) continue to converge.
The accumulation of this sense of unbelonging through different norms, expectations, and inaccessible facets, whether within a reading room – which may not allow water or laptops – and/or outside – where there may be little to no accessible or affordable public transportation – comes at a cost. Pickens states, “When it’s not outrightly named as such or calling attention to it . . . It’s expensive. It’s emotionally expensive.” Pickens’ words draw attention to the cost of continually encountering inaccessibility, of being in archival spaces and of navigating all of the barriers that shape one’s experience of that space. Her term focuses not only on the affective impacts of manoeuvring archival spaces but also on the toll it takes to move through spaces that aren’t “necessarily designed with lived experiences of disability in mind.” This term also builds on what Annika M. Konrad terms access fatigue: “the everyday pattern of constantly needing to help others participate in access, a demand so taxing and so relentless that, at times, it makes access simply not worth the effort.”[87] By drawing attention to the emotional cost of yet another space where inaccessibility is prevalent, compounded, and accumulated, this research underscores the painful, disappointing, and exhausting effects of experiences such as being confronted with inaccessible environments, witnessing the deprioritization of materials on disability, and being unable to access digitized materials.
This concept also points to the limits of this study: due to such accumulations of inaccessibility, the sample size of this research is relatively small. While this research is not invested in generalizable data, I also recognize all of the disabled people – namely, disabled people of colour – who I could not interview due to all of the ways disabled and other marginalized bodyminds might avoid the emotional expense of being in archival spaces often designed for white, academic, abled researchers. Lau reflects on this absence of other disabled researchers, “many of whom have never been [to the archives], are like me and feel alienated by it.” Importantly, then, these limits further highlight the connections between archival spaces and materials. Hamraie explains that “making built environments is an exercise of power entangled with the politics of knowing.”[88] Their words resonate directly with this project, as the ways barriers compound and accumulate can prevent disabled people from accessing our own histories.
Conclusion
These findings illustrate the multiple ways disabled people can feel symbolically annihilated through archives. While demonstrating that the logistics of accessibility – such as wheelchair access, flexible reading room policies, digitization, and financial support – are crucial (and need improvement), this research underscores the complexity of inaccessibility as well as its affective impacts on disabled archives users. Participants’ words identify the ways that archives embody certain values around accessibility and the ways those values shape a sense of belonging in disabled archival users. Returning to the title quote from Honisch, archives can produce “spaces that don’t necessarily exclude disabled bodies in overt ways, but they weren’t necessarily designed with lived experiences of disability in mind.” Echoing much of the recent work on critical access studies, this research has shown the complex ways that disabled people experience inaccessibility, which are not limited to disability – but are connected to multiple aspects of their identities – and are not limited to physical archival spaces but extend to the ways materials are treated and described and the expectations about how spaces are to be used. Titchkosky highlights how bodies become oriented to space and spaces become oriented to bodies.[89] The concept of “emotionally expensive” draws attention to the cost of manoeuvring multiple, interlocking systems of expectation, orientation, and assumptions: how bodyminds are expected to use archives and be in archival spaces and how the infrastructure of inaccessibility starts with multiple institutional norms of who is presumed to use or belong in a space.
While adhering to physical accessibility standards is crucial for increasing access to archives for disabled researchers as well as for disabled donors, records creators, archivists, and other community members who contribute to and use archives, much more needs to be done. And although ramps and elevators to archival spaces are essential, archives can remain inaccessible through ableist, sanist, and audist expectations of comportment in archives, which inform the contextual aspects of records. Moreover, compliance-based models and legislation might do little to address other axes of power. Hamraie highlights, for example, that building ramps for racially segregated schools does little to address racism. Considering the multiple ways in which spaces embody politics, then, can help archives to refigure more radical concepts of accessibility against the background of the multiple affective ways in which people feel they do not belong in archival spaces. For disabled people, “that feeling of being a burden is such a defining experience of being disabled.” Continually confronting inaccessibility – in archives and elsewhere – is exhausting. It is emotionally expensive.
The aim of this article is not to provide solutions to archival inaccessibility but to illustrate and expose the affects of unbelonging for these disabled archival users. Highlighting the emotional expense of inaccessibility provides an opportunity to complicate archival realities: Demonstrating the social and built constructs that inhibit disabled people’s equal access to opportunities and resources lays a foundation for necessary archival interventions; as Titchkosky states, “People require access to a general feeling of legitimate participation, meaningfulness, and belonging.”[90] While archives balance heavy workloads of materials to process with the monetary and labour costs of digitization and accessibility, this research shows how deprioritization of access is an issue of the distribution of material resources.
As these quotes train a critical lens on the costs of inaccessibility, this research also opens up a space where, alternately, access can be a co-created, expansive opening for love and care. Just as inaccessibility can create hostile environments that can deny people access to their own histories, so, too, can access be a form of love, care, and community. Building on Mingus’s work on access intimacy, Desiree Valentine emphasizes how access “involves an ongoing, interpersonal process of relating and taking responsibility for our inevitable encroachment on each other.”[91] To acknowledge how spaces are political and embody ways of knowing, how policies inform and are informed by spatial configurations, and how access can be a profound act of care, knowledge building, and love, I want to emphasize the power of access as relationship building. This is a call for archives to build relationships in meaningful ways with disabled people, hire them, compensate them for their time, and value their knowledge. In line with some archivists’ calls for radical empathy, an aim of this research is to help archives justify re/designing their spaces, policies, and daily work to better support and prioritize research for and contributions from disabled people.[92] Working through the lens of critical access studies, archival accessibility could be expanded as a collaborative initiative in support of multiple agendas – not only through cross-disability solidarity and nuanced frameworks of how bodies and minds can experience archives but also in tandem with anti-racist and/or de- or anti-colonization efforts for archival spaces, policies, and work.
Parties annexes
Biographical note
Gracen Brilmyer is an assistant professor in the School of Information Studies at McGill University and the Director of the Disability Archives Lab. Their research lies at the intersection of feminist disability studies and archival studies, where they investigate the ways in which disabled people use, experience, and understand themselves through archives and ways to tell histories of disability when there is little or no archival evidence. Their writing on disability history and archival impacts has been featured in publications such as the Journal of Contemporary Archival Studies, the Journal of Feminist Scholarship, and Archival Science. For more, visit disabilityarchiveslab.com.
Notes
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[1]
I would like to first thank the participants for their ongoing engagement with developing these ideas. It is an honour to continue to work with your words and to elevate your experiences. Thank you to Julia Rose Karpicz, Crystal Lee, Michelle Caswell, Liz Jackson, and Louise Hickman for their time, feedback, and support in helping this piece take shape. And thank you to the co-editors of this special issue – Jennifer Douglas, Jessica Lapp, Mya Ballin, and Sadaf Ahmadbeigi – and the peer reviewers, whose generosity and feedback have further helped me realize these ideas.
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[2]
Alice Wong, Mia Mingus, and Sandy Ho, “Access Is Love,” Disability Visibility Project (blog), February 1, 2019, https://disabilityvisibilityproject.com/2019/02/01/access-is-love/.
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[3]
Bojana Coklyat and Shannon Finnegan, Alt Text as Poetry (website), accessed January 8, 2021, https://alt-text-as-poetry.net.
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[4]
Louise Hickman and Tanya Titchkosky, “Access and Abundance,” Nottingham Contemporary, September 30, 2021, https://nottinghamcontemporary.org/whats-on/talk-access-and-abundance/; Louise Hickman and Shannon Finnegan, “Captioning on Captioning,” Lux, accessed December 21, 2021, https://lux.org.uk/online-exhibition/louise-hickman-and-shannon-finnegan-captioning-on-captioning.
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[5]
Mia Mingus, “Access Intimacy: The Missing Link,” Leaving Evidence (blog), May 5, 2011, https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/.
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[6]
Mia Mingus, “Access Intimacy, Interdependence and Disability Justice,” Leaving Evidence (blog), April 12, 2017, https://leavingevidence.wordpress.com/2017/04/12/access-intimacy-interdependence-and-disability-justice/.
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[7]
Aimi Hamraie, Building Access: Universal Design and the Politics of Disability (Minneapolis: University of Minnesota Press, 2017), 95.
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[8]
Kim E. Nielsen, A Disability History of the United States (Boston: Beacon Press, 2013), 160.
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[9]
Nielsen, A Disability History of the United States; Ruth Colker, The Disability Pendulum: The First Decade of the Americans with Disabilities Act (New York: NYU Press, 2005).
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[10]
Americans with Disabilities Act of 1990, Pub. L. No. 101-336 (1990).
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[11]
Deborah Stienstra, Aileen Wight-Felske, and Colleen Watters, eds., Making Equality: History of Advocacy and Persons with Disabilities in Canada (Concord, ON: Captus Press, 2003).
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[12]
M. David Lepofsky, “The Charter’s Guarantee of Equality to People with Disabilities – How Well Is It Working?” Windsor Yearbook of Access to Justice, no. 16 (1998): 155–216; Yvonne Peters, “Twenty Years of Litigating for Disability Equality Rights: Has It Made a Difference? An Assessment by the Council of Canadians with Disabilities,” Council of Canadians with Disabilities, January 26, 2004, http://www.ccdonline.ca/en/humanrights/promoting/20years; Mélanie Bénard, “Promouvoir l’accessibilité à l’aide de la loi: un appel à une réforme législative au Québec,” Canadian Journal of Disability Studies 6, no. 2 (2017): 78–111; Dustin Galer, “Disability Rights Movement in Canada,” in The Canadian Encyclopedia (n.p.: Historica Canada, February 5, 2015), www.thecanadianencyclopedia.ca/en/article/disability-rights-movement; David Lepofsky, “Ontario’s Progress Towards Fully Accessible Transportation for People with Disabilities,” January 23, 2014, York University, video and additional files, 1:02:55, https://digitalcommons.osgoode.yorku.ca/lepofsky/6; Nancy Hansen, Roy Hanes, and Diane Driedger, Untold Stories: A Canadian Disability History Reader (Toronto: Canadian Scholars, 2018); Jerome E. Bickenbach, “Disability, Culture and the UN Convention,” Disability and Rehabilitation 31, no. 14 (2009): 1111–24, https://doi.org/10.1080/09638280902773729.
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[13]
Bénard, “Promouvoir l’accessibilité à l’aide de la loi.”
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[14]
Galer, “Disability Rights Movement in Canada”; Geoffrey Reaume, “Disability History in Canada: Present Work in the Field and Future Prospects,” Canadian Journal of Disability Studies 1, no. 1 (2012): 35–81, https://doi.org/10.15353/cjds.v1i1.20.
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[15]
Accessible Canada Act, S.C. 2019, c. 10.
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[16]
Colker, The Disability Pendulum, 7.
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[17]
Peters, “Twenty Years of Litigating for Disability Equality Rights.”
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[18]
Mary Ann McColl, Rebecca Bond, David W. Shannon, and Charles Shortt, “People with Disabilities and the Charter: Disability Rights at the Supreme Court of Canada Under the Charter of Rights and Freedoms,” Canadian Journal of Disability Studies 5, no. 1 (2016): 183–210, 206, https://doi.org/10.15353/cjds.v5i1.251.
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[19]
Teresa L. Scheid, “Stigma as a Barrier to Employment: Mental Disability and the Americans with Disabilities Act,” International Journal of Law and Psychiatry 28, no. 6 (2005): 670–90, https://doi.org/10.1016/j.ijlp.2005.04.003.
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[20]
Suzanne Wilhelm, “Accommodating Mental Disabilities in Higher Education: A Practical Guide to ADA Requirements,” Journal of Law & Education 32, no. 2 (2003): 217–38, 236.
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[21]
Sarah Parker Harris, Robert Gould, Patrick Ojok, Glenn Fujiura, Robin Jones, and Avery Olmstead IV, “Scoping Review of the Americans with Disabilities Act: What Research Exists, and Where Do We Go from Here?” Disability Studies Quarterly 34, no. 3 (2014), https://doi.org/10.18061/dsq.v34i3.3883.
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[22]
Corinne Lajoie, “The Problems of Access: A Crip Rejoinder via the Phenomenology of Spatial Belonging,” Journal of the American Philosophical Association 8, no. 2 (2022): 318–37, 326, https://doi.org/10.1017/apa.2021.6.
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[23]
Jerome E. Bickenbach, “Canadian Charter v. American ADA: Individual Rights or Collective Responsibilities,” Disability and Social Policy in Canada, no. 2 (2006): 188–209.
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[24]
The building features not only elevators with large buttons, braille placards, wide corridors, automatic doors, accessible restrooms, and a fragrance-free workplace policy but also a bright red helical ramp that winds upward through the centre of the building – a central design feature that is usable by many different types of bodyminds and that foregrounds the many ways in which disabled people interact with spaces.
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[25]
Liz Jackson and Alex Haagaard, “World’s First Adaptive Deodorant,” #CriticalAxis: A Community Driven Project from The Disabled List (blog), May 25, 2021, https://www.criticalaxis.org/critique/worlds-first-adaptive-deodorant/; Rose Eveleth, “When Disability Tech Is Just a Marketing Exercise,” The Outline, accessed December 7, 2021, https://theoutline.com/post/2452/when-disability-tech-is-just-a-marketing-exercise.
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[26]
Liz Jackson, “Opinion | We Are the Original Lifehackers,” New York Times, May 30, 2018, https://www.nytimes.com/2018/05/30/opinion/disability-design-lifehacks.html.
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[27]
Stacey Milbern, “Notes on ‘Access Washing,’” Disability Justice Network of Ontario, February 20, 2019, https://www.djno.ca/post/notes-on-access-washing.
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[28]
Milbern, “Notes on ‘Access Washing.’”
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[29]
For more in-depth tracings of accessible design and design around disability, see Elizabeth Guffey, Designing Disability: Symbols, Space, and Society (London: Bloomsbury Academic, 2017); Hamraie, Building Access; Sara Hendren, What Can a Body Do?: How We Meet the Built World, illust. ed. (New York: Riverhead Books, 2020); Bess Williamson, Accessible America: A History of Disability and Design (New York: New York University Press, 2019); Jaipreet Virdi, Hearing Happiness: Deafness Cures in History (Chicago, IL: University of Chicago Press, 2020), https://press.uchicago.edu/ucp/books/book/chicago/H/bo48885494.html; Bess Williamson, “Getting a Grip: Disability in American Industrial Design of the Late Twentieth Century,” Winterthur Portfolio 46, no. 4 (2012): 213–36, https://doi.org/10.1086/669668.
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[30]
Theresa S. Arndt and Anna Schnitzer, “Library Services for People with Disabilities,” Reference Services Review 46, no. 3 (2018): 321–24, https://doi.org/10.1108/RSR-08-2018-089.
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[31]
Angela Gallagher, “Archives and the Road to Accessibility,” Perspectives on History, July 15, 2019, https://www.historians.org/publications-and-directories/perspectives-on-history/summer-2019/archives-and-the-road-to-accessibility.
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[32]
Library and Archives Canada, “Your On-Site Visit,” Library and Archives Canada, December 8, 2014, https://www.bac-lac.gc.ca/eng/services-public/visit/Pages/your-visit.aspx.
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[33]
US National Archives and Records Administration, “Accessibility,” National Archives, accessed August 15, 2016, https://www.archives.gov/global-pages/accessibility.
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[34]
Libraries, in addition, have been at the forefront of developing ways to accommodate disabled patrons. Librarians Michelle Kowalsky and John Woodruff, for example, have recently created a resource that covers many ways in which libraries can not only comply with ADA standards but also create inclusive spaces for people with disabilities. They provide many strategies both to involve people with disabilities in planning, employment, and collaboration and to make spaces and materials accessible to disabled patrons, such as by installing slip-resistant flooring and providing alternatives to printed text. Others have addressed ways that libraries can better serve disabled library patrons, support disabled librarians, and increase accessibility compliance while creatively supporting disabled people. Disabled librarian J.J. Pionke states that “while the law is clear that accommodations must be offered to people who ask for them, the law does not stipulate that employers have to understand, educate, or embrace the person with a disability, and that is the crux of the issue.” J.J. Pionke, “The Impact of Disbelief: On Being a Library Employee with a Disability,” Library Trends 67, no. 3 (2019): 423–35, https://doi.org/10.1353/lib.2019.0004. Pionke advocates not just for ADA compliance but proposes developing a culture of equity using universal design, which includes educating all employees about disability and implicit bias as well as modelling appropriate behaviours around equity and equality. See also Arndt and Schnitzer, “Library Services for People with Disabilities”; Michelle Kowalsky and John Woodruff, Creating Inclusive Library Environments: A Planning Guide for Serving Patrons with Disabilities (Chicago, IL: ALA Editions, 2016).
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[35]
Michelle Caswell, Marika Cifor, and Mario H. Ramirez, “‘To Suddenly Discover Yourself Existing’: Uncovering the Impact of Community Archives,” American Archivist 79, no. 1 (2016): 56–81, https://doi.org/10.17723/0360-9081.79.1.56.
-
[36]
For example, see Jennifer Bowers, Katherine Crowe, and Peggy Keeran, “‘If You Want the History of a White Man, You Go to the Library’: Critiquing Our Legacy, Addressing Our Library Collections Gaps,” Collection Management 42, no. 3–4 (2017): 159–79, https://doi.org/10.1080/01462679.2017.1329104; Caswell, Cifor, and Ramirez, “‘To Suddenly Discover Yourself Existing’”; Heather MacNeil, Wendy Duff, Alicia Dotiwalla, and Karolina Zuchniak, “‘If There Are No Records, There Is No Narrative’: The Social Justice Impact of Records of Scottish Care-Leavers,” Archival Science 18, no. 1 (2018): 1–28, https://doi.org/10.1007/s10502-017-9283-2; Ana Roeschley and Jeonghyun Kim, “‘Something That Feels Like a Community’: The Role of Personal Stories in Building Community-Based Participatory Archives,” Archival Science 19, no. 1 (2019): 27–49, https://doi.org/10.1007/s10502-019-09302-2; Jimmy Zavala, Alda Allina Migoni, Michelle Caswell, Noah Geraci, and Marika Cifor, “‘A Process Where We’re All at the Table’: Community Archives Challenging Dominant Modes of Archival Practice,” Archives and Manuscripts 45, no. 3 (2017): 202–15, https://doi.org/10.1080/01576895.2017.1377088; Joyce Gabiola, Gracen Brilmyer, Michelle Caswell, and Jimmy Zavala, “‘It’s a Trap’: Complicating Representation in Community-Based Archives,” American Archivist 85, no. 1 (2022): 60–87, https://doi.org/10.17723/2327-9702-85.1.60.
-
[37]
Gracen M. Brilmyer, “‘It Could Have Been Us in a Different Moment. It Still Is Us in Many Ways’: Community Identification and the Violence of Archival Representation of Disability,” in Sustainable Digital Communities, Lecture Notes in Computer Science, ed. Anneli Sundqvist, Gerd Berget, Jan Nolin, and Kjell Ivar Skjerdingstad (Cham, CH: Springer International Publishing, 2020), 480–86, https://doi.org/10.1007/978-3-030-43687-2_38; Gracen Mikus Brilmyer, “‘I’m Also Prepared to Not Find Me. It’s Great When I Do, but It Doesn’t Hurt If I Don’t’: Crip Time and Anticipatory Erasure for Disabled Archival Users,” Archival Science 22, no. 2 (2022): 167–88, https://doi.org/10.1007/s10502-021-09372-1.
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[38]
Michelle Caswell, Joyce Gabiola, Jimmy Zavala, Gracen Brilmyer, and Marika Cifor, “Imagining Transformative Spaces: The Personal–Political Sites of Community Archives,” Archival Science 18, no. 1 (2018): 73–93, https://doi.org/10.1007/s10502-018-9286-7.
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[39]
Caswell, Gabiola, Zavala, Brilmyer, and Cifor, 89.
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[40]
Caswell, Gabiola, Zavala, Brilmyer, and Cifor, 90.
-
[41]
Jamie A. Lee, “Archives as Spaces of Radical Hospitality,” Australian Feminist Studies 36, no. 108 ( 2021): 1–9, 6, https://doi.org/10.1080/08164649.2021.1969520.
-
[42]
Jarrett M. Drake, “Liberatory Archives: Towards Belonging and Believing (Part 1),” On Archivy (blog), October 22, 2016, https://medium.com/on-archivy/liberatory-archives-towards-belonging-and-believing-part-1-d26aaeb0edd1.
-
[43]
Ryan Lee Cartwright, “Out of Sorts: A Queer Crip in the Archive,” Feminist Review 125, no. 1, (2020): 62–69, https://doi.org/10.1177/0141778920911936.
-
[44]
This study is approved by UCLA’s Institutional Review Board (IRB).
-
[45]
Anselm Strauss and Juliet Corbin, Basics of Qualitative Research: Techniques and Procedures for Grounded Theory (Newbury Park, CA: SAGE Publications, 1998); Johnny Saldana, The Coding Manual for Qualitative Researchers, 3rd ed. (Los Angeles: Sage Publications, 2015).
-
[46]
Louise Hickman and David Serlin, “Towards a Crip Methodology for Critical Disability Studies,” in Interdisciplinary Approaches to Disability: Looking Towards the Future, ed. Katie Ellis, Rosemarie Garland-Thomson, Mike Kent, and Rachel Robertson (London: Routledge, 2018), 131–41, https://doi.org/10.4324/9781351053228.
-
[47]
Michelle Ganz, interview by author, August 14, 2019.
-
[48]
Megan Suggitt, interview by author, July 6, 2018.
-
[49]
Stefan Sunandan Honisch, interview by author, July 18, 2018.
-
[50]
Jess Waggoner, interview by author, August 16, 2018.
-
[51]
Lilith Siegel, interview by author, August 23, 2018.
-
[52]
Cody Jackson, interview by author, July 5, 2018.
-
[53]
Jackson, interview.
-
[54]
Honisch, interview.
-
[55]
Travis Chi Wing Lau, interview by author, August 16, 2019.
-
[56]
Suggitt, interview.
-
[57]
Corbett Joan OToole, interview by author, July 17, 2018.
-
[58]
These include, to name a few, the ways in which disabled people are likely to experience poverty, struggle with obtaining jobs that accommodate their access needs, and have other prioritized expenses such as caregivers, assistive technology, medical bills, and technology repair; the physical, mental, or cognitive ways in which they may be unable work for stretches of time while also having to navigate other time-consuming systems (like finding accessible transportation); and the ways in which they are and have been excluded from academic spaces (Black disabled children, for example, are more likely to be under-diagnosed and over-punished in primary and secondary education, which impacts their ability to continue, to participate in higher education, and to have academic affiliation). Myles Moody, “From Under-Diagnoses to Over-Representation: Black Children, ADHD, and the School-to-Prison Pipeline,” Journal of African American Studies 20, no. 2 (2016): 152–63, https://doi.org/10.1007/s12111-016-9325-5.
-
[59]
Suggitt, interview.
-
[60]
Siegel, interview.
-
[61]
Siegel, interview.
-
[62]
Therí A. Pickens, interview by author, September 6, 2018.
-
[63]
Pickens, interview.
-
[64]
OToole, interview.
-
[65]
Suggitt, interview.
-
[66]
Waggoner, interview.
-
[67]
Honisch, interview.
-
[68]
Pickens, interview.
-
[69]
Lau, interview.
-
[70]
Ganz, interview.
-
[71]
Lau, interview.
-
[72]
Lau, interview.
-
[73]
Pickens, interview.
-
[74]
Lau, interview.
-
[75]
Williamson, Accessible America, 11.
-
[76]
Drake, “Liberatory Archives.”
-
[77]
Emily Sara, “The White Pube | Art Criticism Etc.,” The White Pube, accessed May 23, 2020, https://www.thewhitepube.co.uk (post has since been deleted). Quote used with consent of the author.
-
[78]
Price draws on Jeffrey T. Grabill’s notion of infrastructure to highlight how places are connected to the activities that occur within them. Margaret Price, Mad at School: Rhetorics of Mental Disability and Academic Life (Ann Arbor: University of Michigan Press, 2011), 60; Jeffrey T. Grabill, “On Divides and Interfaces: Access, Class, and Computers,” in “20th Anniversary Special Issue Part 1,” ed. Heidi McKee and Dànielle DeVoss, Computers and Composition 20, no. 4 (2003): 455–72, https://doi.org/10.1016/j.compcom.2003.08.017.
-
[79]
Lajoie, “The Problems of Access,” 330, 331.
-
[80]
Price, Mad at School, 61.
-
[81]
Aimi Hamraie, “Critical Access Studies” (Keynote address at UD @ UAZ Summit 2020, University of Arizona, April 23, 2020), https://oia.arizona.edu/content/898.
-
[82]
Pickens, interview.
-
[83]
Patty Berne, “Disability Justice – A Working Draft by Patty Berne,” Sins Invalid (blog), June 10, 2015, http://sinsinvalid.org/blog/disability-justice-a-working-draft-by-patty-berne; K.J. Rawson, “Accessing Transgender // Desiring Queer(er?) Archival Logics,” Archivaria 68 (Fall 2009): 123–40; Jina B. Kim, “Toward a Crip-of-Color Critique: Thinking with Minich’s ‘Enabling Whom?’” Lateral 6, no. 1 (2017), http://csalateral.org/issue/6-1/forum-alt-humanities-critical-disability-studies-crip-of-color-critique-kim/; Sami Schalk and Jina B. Kim, “Integrating Race, Transforming Feminist Disability Studies,” Signs: Journal of Women in Culture and Society 46, no. 1 (2020): 31–55, https://doi.org/10.1086/709213; Sami Schalk, “Critical Disability Studies as Methodology,” Lateral 6, no. 1 (2017), https://csalateral.org/issue/6-1/forum-alt-humanities-critical-disability-studies-methodology-schalk/.
-
[84]
Lajoie, “The Problems of Access,” 322.
-
[85]
For example, see Jay Dolmage, Academic Ableism: Disability and Higher Education (Ann Arbor: University of Michigan Press, 2017); Julia Rose Karpicz, “‘Just My Being Here Is Self-Advocacy’: Exploring the Self-Advocacy Experiences of Disabled Graduate Students of Color,” JCSCORE 6, no. 1 (2020): 137–63, https://doi.org/10.15763/issn.2642-2387.2020.6.1.137-163; Lajoie, “The Problems of Access”; Price, Mad at School; Tanya Titchkosky, The Question of Access: Disability, Space, Meaning (Toronto: University of Toronto Press, 2011).
-
[86]
Dolmage, Academic Ableism.
-
[87]
Annika M. Konrad, “Access Fatigue: The Rhetorical Work of Disability in Everyday Life,” College English 83, no. 3 (2021): 179–99.
-
[88]
Hamraie, Building Access, 3, 14. (emphasis in original)
-
[89]
Titchkosky, The Question of Access.
-
[90]
Titchkosky, The Question of Access, 8. (emphasis added)
-
[91]
Desiree Valentine, “Shifting the Weight of Inaccessibility: Access Intimacy as a Critical Phenomenological Ethos,” Journal of Critical Phenomenology 3, no. 2 (2020): 76–94.
-
[92]
Elvia Arroyo-Ramírez, Jasmine Jones, Shannon O’Neill, and Holly A. Smith, “An Introduction to Radical Empathy in Archival Practice,” Journal of Critical Library and Information Studies 3, no. 2 (2021), https://doi.org/10.24242/jclis.v3i2.171; Michelle Caswell and Marika Cifor, “From Human Rights to Feminist Ethics: Radical Empathy in the Archives,” Archivaria 81 (Spring 2016): 23–43.