Disability Activism Research Articles

Becoming the Rolling Quads: Disability Politics at the University of California, Berkeley, in the 1960s

Historical analyses of 1960s university campus activism have focused on activities related to the civil rights movement, Free Speech Movement, and opposition to the Vietnam War. This study supplements the historiography of civil disobedience and political activity on college campuses during that tumultuous era with an account of the initiation of the disability rights movement with the Rolling Quads, a group of disabled student activists at the University of California, Berkeley. This small group, with little political experience and limited connections to campus and community activists, organized to combat the paternalistic managerial practices of the university and the California Department of Rehabilitation. Drawing from the philosophy and strategies of the seething political culture of 1969 Berkeley, the Rolling Quads formed an activist cell that expanded within less than a decade into the most influential disability rights organization in the country.

Double Jeopardy: Plight of Female Students with Disabilities in Botswana’s Higher Education

Although substantial recent research addresses the importance of higher education (HE) for students with disabilities, this sector has remained under-researched in Botswana. The struggle of female students with disabilities to access and participate in HE remains an issue of great concern for disability activists and researchers. The purpose of this phenomenological study was to explore and describe the lived experiences of female students with disabilities in their struggle to access and participate in three HE institutions in Botswana. Seven female students with disabilities participated in this research. Multiple methods, such as focus group discussions, photovoice and solicited journals, were used to collect data. The data were analysed using Atlas.ti 7.5 qualitative data analysis software. Three themes emerged, and they are (a) socio-cultural issues and disability identity, (b) access and participation in HE and (c) empowerment of female students. These findings served to inform Botwana’s HE institutions that include female students with disabilities, to help them to promote participation as well as quality of experiences.

Legal Ableism, Interrupted: Developing Tort Law & Policy Alternatives to Wrongful Birth & Wrongful Life Claims

Early in 2016, the widely acclaimed film Me Before You premiered nationally to a spate of disabled-led protests against the ableism in the film's core story – that of a wealthy, physically disabled young man whose romantic and sexual relationship with a young woman hired as his caregiver (and quasi-maternal or mentoring figure) leads to his choice to kill himself to avoid living further while disabled, and to bequeath his assets to her. Protested as a "disability snuff film" by leading groups like Not Dead Yet, disabled activists lambasted the film for its glorification of assisted suicide as a brave and heroic choice because of the protagonist's disability – criticizing the writers for sending a very strong message that it is better to be dead than to live as disabled, however that might be defined or understood. U.S. law has often embodied that very same message despite the existence of civil rights protections for people with disabilities, and most particularly and glaringly in its adoption of wrongful birth and wrongful life claims as cognizable in tort. In this paper, I aim to provide brief context on the nature and history of wrongful birth and wrongful life claims, examine the myriad social harms toward disabled people that stem from their assertion, explore non-ableist purposes for which these claims might be brought, and propose potential legal and policy mechanisms as alternative means for achieving their possible legitimate purposes without reliance on them.

The Distinction Between Curative and Assistive Technology.

Disability activists have sometimes claimed their disability has actually increased their well-being. Some even say they would reject a cure to keep these gains. Yet, these same activists often simultaneously propose improvements to the quality and accessibility of assistive technology. However, for any argument favoring assistive over curative technology (or vice versa) to work, there must be a coherent distinction between the two. This line is already vague and will become even less clear with the emergence of novel technologies. This paper asks and tries to answer the question: what is it about the paradigmatic examples of curative and assistive technologies that make them paradigmatic and how can these defining features help us clarify the hard cases? This analysis will begin with an argument that, while the common views of this distinction adequately explain the paradigmatic cases, they fail to accurately pick out the relevant features of those technologies that make them paradigmatic and to provide adequate guidance for parsing the hard cases. Instead, it will be claimed that these categories of curative or assistive technologies are defined by the role the technologies play in establishing a person's relational narrative identity as a member of one of two social groups: disabled people or non-disabled people.

Achieving Disability Equality: Empowering Disabled People to Take the Lead

Achieving disability equality calls for transformative changes to society’s structures and norms. Recognizing the central role of disabled people and their organizations in this restructuring, and the call of the Convention on the Rights of Persons with Disabilities (CRPD) for their full inclusion in all legal and policy decisions relating to their rights, this article focuses on how disability groups and organizations regard their ability to effect changes in line with the CRPD. The article draws on qualitative interviews with leaders of disability organizations and activist groups in Iceland in 2016 and 2017. The findings reflect frustration among the leaders with what they perceive to be a lack of sustained progress in the decade since the country signed the CRPD. In their view, this period has been characterized by a lack of meaningful involvement of disabled people in policymaking, and a lack of political will and interest in disability affairs, which has resulted in stagnation. As a result, leaders of disabled people’s organizations have begun to change their strategies and are taking steps to redefine their approaches, and reframe the issues and dialogue with authorities in a more progressive manner, demanding to have more say in the process of change.

Building capacity or enforcing normalcy? Engaging with disability scholarship in Africa

ABSTRACTIn contemporary South African academia, “community engagement” is a valued commodity. My work as a nondisabled white man with disability activists and as editor of the African Journal of Disability is viewed as good for my career, and as an appropriate form of engagement and empowerment. In this article, I engage critically with the question of the extent to which capacity building is simply about increasing capacity. I ask whether capacity building inevitably involves elements of disavowal of the experience and competencies of less powerful people. I compare capacity building to the enforcement of normalcy, a process which disability scholars criticize with justification. I ask whether it is possible in unequal social contexts to engage with the politics of voice without imposing a hegemonic narrative on nondominant voices. I suggest links between the politics of engaged scholarship and processes of domestication of troubling bodies and minds.

Rhetorical Touch: Disability, Identification, Haptics by Shannon Walters

Rhetorical Touch: Disability, Identification, Haptics by Shannon Walters

Cripping Time in the College Composition Classroom

This article shares findings from a qualitative study on the experiences of students with disabilities in college-level writing and writing-intensive classrooms. I argue that normative conceptions of time and production can negatively constrain student performance, and I offer the concept of crip time (borrowed from disability theorists and disability activists) as an alternative pedagogical framework.

Should we take the 'disability' out of discrimination laws?: Students with challenging behaviour and the definition of disability

Disability discrimination law has been of limited benefit to people with atypical and challenging behaviour. The role that law might play in upholding the equality rights of people with challenging behaviour is potentially expanded by changing medical and scientific knowledge about such behaviour, which brings more people within the definition of 'disability' and the protective ambit of the law. Yet this protective promise has not translated into legal gains, with few successful equality law cases decided in Australian courts and tribunals. This article critically examines the role of law, particularly anti-discrimination law, in regulating (or protecting) divergent behaviour, using a case study of students with challenging behaviour in Australian schools. It considers the lack of successful discrimination law cases in the education context, and asks whether, given this seeming legislative failure, disability discrimination laws have anything left to offer school students in terms of protecting their equality rights. The article gives an overview of anti-discrimination complaints and cases brought by students with challenging behaviour. It includes interview data from State and federal anti-discrimination bodies, legal practitioners and disability activists to complement case law and other public reports of discrimination. Using this background data, the article considers whether current discrimination law models do enough to protect the rights of students with challenging behaviour to education and inclusion in public life or whether new legal and policy measures are needed. It specifically examines changes to the regulatory landscape, including the Convention on the Rights of Persons with Disability, and whether there are any real prospects for law reform.

Remediating disability activism in the lesbian feminist archive

This article argues that U.S.-based lesbian feminist cultural work of the 1980s constitutes a generative – but underutilized – archive for scholarship on the intersection of feminist, queer and disability studies. Specifically, this article uses a May 1981 special issue of the feminist newspaper off our backs (oob) on ‘Women With Disabilities’ to historicize the emergence of a network of lesbian feminist disability activists. Tucked between the pages of this special issue of oob are, for example, Connie Panzarino’s vision for a non-monogamous community of disabled women and a reproduction of Tee Corinne’s solarized photograph of a woman in a wheelchair with her able-bodied lover. In exploring a small and largely forgotten network of lesbian disability activists, this article reads their cultural work as world making projects that model a mode of activist praxis and theory writing for the present moment.

Underreporting ‘Bout a Revolution: A Historical–Comparative Study Exploring Major Newspaper Coverage of Disability Rights in a Revolutionary Context (1980–2017)

The disability rights movement has grown considerably. Recognizing that this international movement has travelled largely under the media radar, it nevertheless remains important to explore how this phenomenon has been reported upon over recent decades. Applying historical–comparative and thematic analysis methods to a sample of 16 major newspaper texts published between 1980 and 2017 and obtained via a ProQuest Historical Newspaper database search, as supplemented by eight journal articles retrieved from a Google Scholar search, this exploratory study reveals three key messages. These messages should be of particular interest to newspaper editors, journalists and disability activists around the globe. First, despite a general shortage of major newspaper reporting about the disability rights revolution, progressive themes of activism, legislation, technology and economic participation principles were identified. Second, the ethical reporting of disability rights in a revolutionary context offers opportunities for journalists to move away from disempowering stereotypes. Finally, journalists need to be more prepared to investigate and report about disability rights, the challenges experienced by many people with disabilities, as well as community-endorsed, evidence-based ways forward.

The Forgotten

The violence against disabled women has its own mechanisms, which differentiates it from the violence suffered by women or the disabled in general. The few Spanish studies on this issue have focused on “double discrimination,” instead we propose intersectionality as a more suitable epistemological framework. The research, carried out in Spain, is based on five life stories of disabled activist women which show us how heteropatriarchal and ableist violence intersect in their lives, and the resistance mechanisms that they develop to deal with it. This research gives important clues to plan and design effective interventions for and with disabled women.

Facebook Captions: Kindness, or Inspiration Porn?

Facebook Captions: Kindness, or Inspiration Porn?

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“I’d rather be dead than disabled”—the ableist conflation and the meanings of disability

ABSTRACTDespite being assailed for decades by disability activists and disability studies scholars spanning the humanities and social sciences, the medical model of disability—which conceptualizes disability as an individual tragedy or misfortune due to genetic or environmental insult—still today structures many cases of patient–practitioner communication. Synthesizing and recasting work done across critical disability studies and philosophy of disability, I argue that the reason the medical model of disability remains so gallingly entrenched is due to what I call the “ableist conflation” of disability with pain and suffering. In an effort to better equip healthcare practitioners and those invested in health communication to challenge disability stigma, discrimination, and oppression, I lay out the logic of the ableist conflation and interrogate examples of its use. I argue that insofar as the semiosis of pain and suffering is structured by the lived experience of unwelcome bodily transition or variation, experiences of pain inform the ableist conflation by preemptively tying such variability and its attendant disequilibrium to disability. I conclude by discussing how philosophy of disability and critical disability studies might better inform health communication concerning disability, offering a number of conceptual distinctions toward that end.

Developing a model of disability that focuses on the actions of disabled people

Disabled people, writers on disability and disability activists stress the importance of disabled people being included in all aspects of society. I argue that a major omission from this inclusiveness is that no current model of disability focuses on the impact of the actions of disabled people on disability. Disabled people are not passive bystanders, powerless to reduce the restrictions of disability. On the contrary, we are central to actively limiting its constraints. I develop a model of disability, called ‘active’, which focuses on the effects on disability of the individual and collective actions of disabled people. I describe published findings which indicate that engaging in self-help, using support groups and deploying assistive technology can all reduce the limitations of disability. Recent increases in the number of disability support groups and developments in assistive technology have substantially augmented the potential for disabled people to combat the effects of disability.

Legal Mobilization within the Bureaucracy: Disability Rights and the Implementation of Antidiscrimination Law in Sweden

This article argues that the analysis of legal mobilization needs to give more attention to the state and its relationship with social movements in order to examine how the state either sustains social movements’ demands or is a field of contention for those demands. Focusing on how disability bureaucrats and activists mobilize antidiscrimination law in Sweden, this article shows that two main factors shape legal mobilization within the bureaucracy and alter the state's ability to become a legal mobilization actor: (1) the institutional relationships between social movement organizations and government agencies and (2) the profiles and careers of bureaucrats and activists. It concludes by suggesting several lines for further research on law and social movements in nonpluralist countries.

Comment from the Field

The Centre for Disability Research (CeDR) at Lancaster University hosted its eighth conference 6-8 September 2016. The three-day event, organized by Hannah Morgan and Brigit McWade, welcomed international delegates, academics from disability studies and multidisciplinary backgrounds, disability activists, and postgraduate students. Eight years on from its establishment by Professors Carol Thomas and Chris Hatton, CeDR continues to provide a space for activists, academics, and organizations to share, consolidate, and revisit matters surrounding disability, impairment, and society. In this comment, I present my own experience of the conference and provide subjective summaries of the talks I attended. Unfortunately, I was only able to attend Day One of the conference; therefore, my report will be limited in terms of overall coverage.The conference was comprised of two streams: Peter Beresford (Brunel University) and Brigit McWade (Lancaster University) led a mad studies stream, while Kirsty Liddiard (University of Sheffield) and Tom Shakespeare (University of East Anglia) hosted a sexuality stream. The former was underpinned by narratives of action and reclaiming the stories of people who have survived institutional oppression on the basis of their mental health experiences. The latter stream provided a forum for conversations surrounding sex, love, and relationships from a disability studies perspective.The conference started with a commanding keynote speech by Sara Ryan (Oxford University), What the fuckwhatery? Disability studies, activism and the continuing denial of the human. Ryan talked of her son, Conor Sparrowhawk, a real dude, also known as laughing boy (LB). Unfortunately, I first came to learn about LB's life due to tragic circumstances. When Conor was 18, he was admitted to an NHS assessment and treatment centre. Conor was identified as having learning difficulties, autism, and epilepsy, and had gone to stay at the facility for a period of time due to the significant mood changes he was experiencing. Conor died during his time at the facility-although I do not go into details here, the event was later proven entirely preventable. At the crux of Ryan's talk was the invisibility surrounding the lives of people who carry the label of learning difficulties. Over the course of her speech, Ryan suggested that people with learning difficulties are largely overlooked in disability studies research. To evidence the point, she reviewed UK-based research published by one of the main journals in the field, Disability & Society, between the years 1994 and 2013 (Conor's lifespan). She found that the range of research relating to learning difficulties, published within the journal over the course of this time period, ranged from as little as 2 to 30%. Given these findings, she called for greater recognition and representation of the lives of people with learning difficulties within disability studies journals.The editor of Disability & Society, Michelle Moore, was present in the audience and responded in a sensitive manner to the pressing issues raised. She called for a greater number of researchers in the field of disability studies to address issues faced by people with learning difficulties. Ryan's talk could not have done a better job in setting a proactive and fierce tone for CeDR's conference. The audience hummed with conversations surrounding bureaucratic frames that, too often, restrict provocative and imaginative approaches to research. One member of the audience called for a redefinition of what research is and looks like. It was pointed out that many disability activists and academics are bloggers and regular contributors to social media; however, within the traditional confines of academia and research, their work would not be viewed as impactful.Indeed, Ryan's keynote speech spurred my own thoughts on the extent to which academic conferences may authentically facilitate participation and engagement with disabled people, who are at the centre of disability studies research. …

Trapped behind the glass: crip theory and disability identity

Many disability scholars and activists have embraced crip theory, a critical discourse that positions disability as a subset of the queer narrative. In doing so, I argue, they have embraced a theoretical framework that does not bridge the gap between the academy and the actual lives of disabled people. Instead, crip theory silences actual disabled experience and fractures the community, harming instead of helping. I propose that we must move beyond the limiting framework of crip theory and find a new discourse that originates in the disabled community itself.

The Goddess on Wheels: Maria R. Palacios

This article discusses the performance work by disability activist, Maria R. Palacios who is a Latina feminist writer, poet and spoken word performer. Using narrative inquiry as a method of investigation, performances by Palacios are analyzed within the context of sexuality and disability studies. Specific performances are reviewed under the framework of the nonprofit organization Sins Invalid: An Unshamed Claim to Beauty in the Face of Invisibility, and include the following pieces by Palacios: Maria Full of Sin (2008), Testimony (2009), Hunger (2009), My Sexy Disability (2010) and Vagina Manifesto (2009). As a performance project, Sins Invalid notes in its mission statement that its ‘performance work explores the themes of sexuality, embodiment and the disabled body’, and the performances are designed to inspire visions of beauty and sexuality that disrupt heteronormative, as well as ableist, paradigms. A portion of this work will be centered on the Sins Invalid website focusing on entries in the form of blog postings dedicated to the performances by Palacios. Additionally, her autobiographic and culturally focused spoken word pieces and poems, such as Making Love to Woman in a Wheelchair (2007), will be thematically analyzed regarding her embodied subjectivity as a sexualized and self-identified disabled Latina. In conclusion, an examination of how performance, in conjunction with narrative research, provides a critical lens regarding visibility and the embodiment of dis/abled women of color for future studies is shared.