First Monday <p><em>First Monday</em> is one of the first openly accessible, peer–reviewed journals solely devoted to resarch about the Internet. <em>First Monday</em> has published 2,224 papers in 320 issues, written by 3,257 different authors over the past 26 years. No subscription fees, no submission fees, no advertisements, no fundraisers, no walls.</p> en-US <p>Authors retain copyright to their work published in <em>First Monday</em>. Please see the footer of each article for details.</p> (Edward J. Valauskas) (Nancy John) Mon, 16 Jan 2023 16:59:33 -0600 OJS 60 ACCESS SERVER: Dreaming, practicing and making access <p>ACCESS SERVER is an e-mail server that anonymizes, collects and financially compensates access requests that disabled people send to cultural institutions. This design research project pushes institutions towards caring for disability access, and upholds disabled knowledges that are currently underdiscussed, underpaid and not cared for by cultural institutions in Europe. In line with the UN Disability Treaty from 2016, ACCESS SERVER supports cultural institutions in transforming their practices so that accessibility is cared for. In this paper, we conceptualize ACCESS SERVER in relation to access, ableism and direct and indirect discrimination. We tend to conflicts, questions, and frictional anti-assimilationist crip technoscience (Hamraie and Fritsch, 2019) perspectives, and locate friction and its relation to heat as a link through technical practices that take shape against ableist cultural institutional infrastructures. In analyzing frictional experiences that emerged when institutional workers encountered the concepts around ACCESS SERVER and our demands for access, we identify three key barriers to partnership building between disabled people and institutions on the basis of our experiences with a European cultural institution: lack of accountability, lack of engagement and barrier guilt. Finally, we discuss technical-financial questions to realize ACCESS SERVER</p> MELT (Ren Loren Britton and Iz Paehr) Copyright (c) 2022 First Monday Mon, 16 Jan 2023 00:00:00 -0600 Cripping_Computer_Graphics: Perspectives on disability representation in CG via community generated 3D asset library <p>Digital media and interactive virtual spaces are increasingly relevant to our understanding of self. As disabled media artists, we use digital and networked mediums to explore our crip experience and point towards a more accessible technological future. Conceived in response to a distortion or absence of disability representation within computer graphics (CG), we started the Cripping_CG project. Cripping_CG is a digital archive of custom made 3D assets, avatars, motion capture animation, bespoke terms of use and expanded data collected from disabled people. It operates as a record of crip culture as well as practical creative resources with which new collaborative creative work can be produced. The project provides a platform to analyze digital creative tools and conventions through a disability lens, identifying inaccessibilities, ableist stereotypes, historical relevance, as well as room for a more expansive disability aesthetics within media arts and cultural archiving.</p> Cielo Saucedo, Nat Decker Copyright (c) 2022 First Monday Mon, 16 Jan 2023 00:00:00 -0600 Creating, archiving and exhibiting disability history: The oral histories of disability activists of the Carleton University Disability Research Group <p>Building a disability archives that is accessible is an ongoing challenge. At Carleton University in Ottawa, Canada, this work began a decade ago with the formation of a modest collection of scholars interested in disability issues. The Carleton University Disability Research Group developed as a collective of scholars, graduate students, and non-governmental organisation workers from the fields of social work, engineering, history, library, and archives, including people with disabilities. Since 2013, it has worked to collect, archive, discuss and display histories of disability in Canada, using various media. This paper documents and analyzes the aspects of this work linked to information studies, from the role of archivists and librarians to the making of archives and exhibits with, for, and about people with disability. It presents innovative decisions, introduces unexpected benefits for all in the light of the project of a critical disability archival method and discusses the potential of universities as a site of practice. It takes its most recent project, the <em>Oral histories of activists in the disability rights movement in Canada (1970–2020)</em> as the main case.</p> Therese Jennissen, Dominique Marshall, Chris Trainor, Beth Robertson Copyright (c) 2022 First Monday Mon, 16 Jan 2023 00:00:00 -0600 Preparing for online peer support for Punjabi men's mental health <p>In the context of the COVID-19 pandemic, some Punjabi men have supported their mental health through digital peer support interventions. However, there is little research which reflects upon the impact of peer support education for people who identify as culturally, linguistically, or geographically Punjabi. This review aims to map, discuss and appraise the scholarly literature concerning Punjabi communities and peer support education. Open-source articles published in English were sought through Google Scholar due to broadest accessibility. Screened articles were analysed for common themes, summarised, and critically appraised alongside a case study reflection. The findings show that there is a distinct lack of literature which could help to develop and evaluate digital peer support education for Punjabi populations and that future research is warranted. Despite this, some existing research can provide scholarly foundations for such work. Further practice and evaluation is required to understand the potential possibilities and pitfalls for peer support education in Punjabi and racialized communities more broadly. Future research should take a specific focus on the potential for impact in peer support for Punjabi communities to explore the unique needs of the population. Without such research we risk being unable to develop precise and specific peer support interventions which may exacerbate existing inequities within mental health more widely.</p> Kulvir Bahra, Shuranjeet Singh, Taimour Ahmed Copyright (c) 2023 First Monday Mon, 16 Jan 2023 00:00:00 -0600 (In)accessibility and the technocratic library: Addressing institutional failures in library adoption of emerging technologies <p>Since 2015, there has been a rapid increase in academic libraries focusing their services on artificial intelligence (AI), immersive technologies (XR), big data, and other technologies that align their interests with corporations in the tech industry. However, there are broad ethical failures within this industry that libraries are not equipped to manage and instead risk importing those failures and discriminatory thinking into library services and technologies. This paper draws on the authors’ research on XR accessibility in academic libraries to illustrate how broader trends in technocratic thinking in academia are producing socio-technical configurations that often exclude disabled library users. It argues that critical failures in designing and implementing accessibility programs for emerging technologies in academic libraries point to the broader technocratic imperatives of contemporary universities operating under the logics of neoliberalism. Accessibility is an afterthought in this context, forcing users to adjust their bodies and senses to conform to the master plans of technology designers and evangelists.</p> Jasmine L. Clark, Zack Lischer-Katz Copyright (c) 2023 First Monday Mon, 16 Jan 2023 00:00:00 -0600 Academic libraries and their legal obligation for content accessibility <p>U.S. academic libraries exist in an unusual space, as they are both providers of access to computers, the Internet, and databases and electronic products, and producers of electronic content through digital repositories and electronic journals. They are part of larger organizations, yet the other parts of these larger organizations are not libraries or even library-related. In addition, there are factors — beyond merely decision-making processes — that make accessibility a far more fraught concern for academic libraries. U.S. academic libraries are also influenced by the policies of new media content creators that maximize their profits through streaming on their own platforms. Further, academic libraries have taken on new roles related to information access, including the collation and distribution of electronic materials through campus digital repositories of preprints, theses, and other works created by faculty, staff, and students. Moreover, in some cases, libraries have stepped into the role of publisher, particularly with respect to open-access electronic journals. For people with disabilities, accessibility in all of these facets is essential for their ability to be equal users of the library. These various roles of academic libraries create a distinct set of legal, technological, and ethical pressures related to ensuring accessibility for individuals with disabilities, which will be explored in this article, along with the potential for academic libraries to become leaders in accessibility in libraries and in broader society.</p> Brian Wentz, Ursula Gorham, Paul T. Jaeger Copyright (c) 2022 First Monday Mon, 16 Jan 2023 00:00:00 -0600 Handicapped has been cancelled: The terminology and logics of disability in cultural heritage institutions <p>This paper originated from a collaborative effort between an academic and archivist and a cataloger to address the issues around the <em>LCSH</em> heading “Social disabilities.” In it, we examine various aspects and consequences resulting from the ways that galleries, libraries, archives, museums, and special collections (GLAMS) organize knowledge about disability and disabled users. We do this primarily through the lens of documentary analysis of cataloging and classification systems as this process, elsewhere called “the power to name” (Olson, 2002), as it is the basis for the operation of GLAMS. First, we will provide an outline and contextual information about the <em>Library of Congress Subject Headings</em> (<em>LCSH</em>), the largest and most influential subject heading vocabulary system in the world. Next, we will examine the discourse around disability in library and information science via the results of a literature review. Next, we will examine the history, transformations, use, and meaning behind the <em>LCSH</em> heading “Social disabilities,” as an example of breakdown in terminology. Finally, and unique to the literature, we will propose an alternative hierarchy of terms for the Persons hierarchy in <em>LCSH</em> and discuss other methods that catalogers may use for organizing holdings about disability.</p> Brian M. Watson, Beck Schaefer Copyright (c) 2022 First Monday Mon, 16 Jan 2023 00:00:00 -0600 Diagnostic advertisements: The phantom disabilities created by social media surveillance <p>This article examines the use of algorithms to target consumers on social media for health and medical product advertising to tell users directly or indirectly what is ’wrong’ with them. The algorithms behind these ads are creating phantom disabled consumers that they project onto real disabled and nondisabled users via advertisements. I call these ads ‘diagnostic advertisements’ to underscore how the concepts of diagnosis and algorithms share similar aims to cure and control. This essay asks: What might the rise of diagnostic advertisements mean for the social status of disabled people and disabled users’ sense of self? I develop and use the method of ‘crip autotheory’ to argue that the ads are an important window into the larger issue of the intensification of the medicalization of everyday life; a process that entails the normalization of surveillance and commodification of personal health.</p> Amy Gaeta Copyright (c) 2023 First Monday Mon, 16 Jan 2023 00:00:00 -0600 Encoding normative ethics: On algorithmic bias and disability <p>Computer-based algorithms have the potential to encode and exacerbate ableism and may contribute to disparate outcomes for disabled people. The threat of algorithmic bias to people with disabilities is inseparable from the longstanding role of technology as a normalizing agent, and from questions of how society defines shared values, quantifies ethics, conceptualizes and measures risk, and strives to allocate limited resources. This article situates algorithmic bias amidst the larger context of normalization, draws on social and critical theories that can be used to better understand both ableism and algorithmic bias as they operate in the United States, and proposes concrete steps to mitigate harm to the disability community as a result of algorithmic adoption. Examination of two cases — the allocation of lifesaving medical interventions during the COVID-19 pandemic and approaches to autism diagnosis and intervention — demonstrate instances of the mismatch between disabled people’s lived experiences and the goals and understandings advanced by nondisabled people. These examples highlight the ways particular ethical norms can become part of technological systems, and the harm that can ripple outward from misalignment of formal ethics and community values.</p> Ian Moura Copyright (c) 2022 First Monday Mon, 16 Jan 2023 00:00:00 -0600 Sidewalks are for people? Futuristic fantasies, disabled lives, and crip sitveillance <p>This article considers so-called self-driving food delivery robots in relation to crip studies and surveillance studies. We analyze these disenabling technologies through a crip positionality we name crip sitveillance — sousveillance practiced from the sitpoint of crip subjects that engages irony and parody to highlight how new surveillance technologies disenable crip lives. We explore as well responses to these vehicles on social media, in which we find evidence that these vehicles provoke unease and, perhaps, emerging crip sousveillant subject positions.</p> Olivia Banner, David Adelman Copyright (c) 2023 First Monday Mon, 16 Jan 2023 00:00:00 -0600 Good for tech: Disability expertise and labor in China's artificial intelligence sector <p>People with disabilities are often perceived as being “given” the opportunity to work, rather than “providing” valuable labor. Centering on disabled data workers as experts involved in the quotidian construction of artificial intelligence (AI) systems in China, this article shows that disability expertise and labor can afford a technical edge to AI systems in a certain political economy. In the case examined, the work of consistently synchronizing interpretations of the ambiguous data and elusive rules of smart home systems prefers a stable annotation workforce with coordinated cognition and trained judgment. This technical demand has come to be met by a committed team of skilled disabled workers, who are pushed out from mainstream job market by systemic ableism, and pulled in by disability-informed expertise that reconfigures space, time, and political economy to meet non-normative bodyminds. Through this exceptional case run by a disabled people led organization, I draw attention to disabled people’s under-examined role as system-builders of information technologies as opposed to users, victims, or inspirations, and highlight the transformative potential of disability expertise.</p> Di Wu Copyright (c) 2022 First Monday Mon, 16 Jan 2023 00:00:00 -0600 Not robots; Cyborgs — Furthering anti-ableist research in human-computer interaction <p>This theoretical essay builds on existing literature to draw out the consequences of dehumanizing and disseminating autism discourses within the field of human-computer interaction (HCI). Focusing mainly on narratives in HCI that frame autistic people as or like machines, we explore how dominant constructions of autism in HCI work to normalize the field’s complicity in violent autism intervention paradigms, despite HCI researchers’ well-meaning intentions. We work towards developing crip-cyborgs as an alternative framework for understanding autistic people (as opposed to computers or robots) and suggest crip technoscience as a framework for research based on this alternative understanding. In doing so, we hope to enroll misguided but well-intentioned researchers in dismantling anti-autistic ableism, both in and beyond HCI.</p> Josh Guberman, Oliver Haimson Copyright (c) 2023 First Monday Mon, 16 Jan 2023 00:00:00 -0600 Definition drives design: Disability models and mechanisms of bias in AI technologies <p>The increasing deployment of artificial intelligence (AI) tools to inform decision-making across diverse areas including healthcare, employment, social benefits, and government policy, presents a serious risk for disabled people, who have been shown to face bias in AI implementations. While there has been significant work on analysing and mitigating algorithmic bias, the broader mechanisms of how bias emerges in AI applications are not well understood, hampering efforts to address bias where it begins. In this article, we illustrate how bias in AI-assisted decision-making can arise from a range of specific design decisions, each of which may seem self-contained and non-biasing when considered separately. These design decisions include basic problem formulation, the data chosen for analysis, the use the AI technology is put to, and operational design elements in addition to the core algorithmic design. We draw on three historical models of disability common to different decision-making settings to demonstrate how differences in the definition of disability can lead to highly distinct decisions on each of these aspects of design, leading in turn to AI technologies with a variety of biases and downstream effects. We further show that the potential harms arising from inappropriate definitions of disability in fundamental design stages are further amplified by a lack of transparency and disabled participation throughout the AI design process. Our analysis provides a framework for critically examining AI technologies in decision-making contexts and guiding the development of a design praxis for disability-related AI analytics. We put forth this article to provide key questions to facilitate disability-led design and participatory development to produce more fair and equitable AI technologies in disability-related contexts.</p> Denis Newman-Griffis, Jessica Sage Rauchberg, Rahaf Alharbi, Louise Hickman, Harry Hochheiser Copyright (c) 2022 First Monday Mon, 16 Jan 2023 00:00:00 -0600 This patient is a hidden messenger: NF2, watchful waiting, and records of care <p>“Watchful waiting” is a medical approach that delays radical intervention, like surgery, but depends on regular imaging and patient self-scrutiny. To explore its social effects in a single case, I conducted an autoethnography of my patient archive from my diagnosis and 17 years of watchful-waiting treatment for neurofibromatosis, type II, a genetic disorder. I show how watchful waiting encourages self-surveillance and the stress it causes. I also discuss how the personal medical archive, with its complicated structure of reports, CDs, and notes, is a tool for communication as well as a cause of moral obligation for the patient. I contrast these uses with information studies of medical records that focus on records’ collaborative use within medical institutions. I conclude that my case has been held in stasis, reinforced by diagnostic surveillance that I participate in, due to the vagueness of “watchful waiting” as a treatment protocol and the uncertainty of more invasive treatments themselves. Through this study, I recenter patients and their needs in the discussion of medical archives and contribute to the collective recognition of disability through the genre of the illness narrative and the method of archival ethnography. I consider how my results conflict with general calls for “open notes” in medical care and cultures of life-logging and -tracking.</p> Samuel DiBella Copyright (c) 2023 First Monday Mon, 16 Jan 2023 00:00:00 -0600 Terms of use: Crip legibility in information systems <p>Centering disabled voices and leveraging disability studies as methodology within the construction of information systems can sharpen analyses of the design of information systems, algorithmic decision making, and their impacts. In this article, we put forth three main points: (1) thinking at the intersection of information and disability studies is productive and sharpens analyses about technology, bodyminds, and identity; (2) disabled people render themselves legible or illegible in information systems by creatively adapting to or resisting them; and (3) analyses of crip legibility are crucial to re-imagining the future of information systems. Together, these facets illustrate a move we call <em>crip legibility</em>: how disabled people flexibly respond to, contort, or collectively organize themselves to fit within (or be understood by) existing information systems while building new systems of resistance and care. This term considers the processes by which disabled bodyminds are disciplined, surveilled, or otherwise required to conform to standards set by existing ableist systems while holding space to reimagine otherwise. Information systems — like library call numbers that classify, document, and inform — might distill someone’s experience or identity into a format that becomes readable for medical diagnosis, hiring, legal compliance, and is reproduced in other settings or systems. Using case studies from this special issue, we show how prevalent and harmful these systems can be, how disabled people have resisted or worked around them, and how we might imagine or build otherwise. Crip legibility, then, draws attention to both histories and contemporary embodiments of surveillance and classification — of both disabled and non-disabled bodies — and commits to reimagining information systems that resist technoableist norms.</p> Gracen Brilmyer, Crystal Lee Copyright (c) 2023 First Monday Mon, 16 Jan 2023 00:00:00 -0600