Disability Activism Research Articles

Disabled People’s Experiences of the Coronavirus Pandemic: A Call to Action for Social Change

<p>The Coronavirus pandemic has caused significant disruption and change in most aspects of society, and there are concerns that disabled people may be particularly disadvantaged. This article, written by disabled activists and non‐disabled allies, shares data extrapolated from focus groups regarding the lived experiences of twelve disabled people and disability allies during the Covid‐19 pandemic, eleven of whom were based in the UK, and one based in Iraq. We describe the key issues and learning points from this data, arguing that the measures taken by the government and organisations to protect the public during the pandemic have instead brought to the fore long‐standing ableist narratives regarding which bodies are valuable in society. This ableist agenda has acted to control and silence the voices of disabled people by objectifying disability and defining “pre‐existing health conditions” as being more expendable, and therefore less worthy of attention during the pandemic. In presenting our position for change and call to action, we will argue that it is only when disabled people’s experiences and voices are heard in decision‐making that policymakers can begin to learn from the inequalities that have been demonstrated through the pandemic. Here, we will introduce our Wellcome Trust‐funded “We Are the People” Disability Research Collective programme (2021–2026). This programme develops a new disability activist‐led research network, whereby disabled people can conduct research into topics that are important to them.</p>

#ecsite2022 — a festive and reflexive gathering of science communicators

The 2022 Ecsite conference took place in Heilbronn, Germany, from 2–4 June after two years of virtual meetings due to the Covid-19 pandemic. This review presents some highlights of this event, including two memorable keynote talks by disability activist Sinéad Burke and author/educator Lucy Hawking.

“Cripping Sex Education”: A Panel Discussion on for Prospective Educators


 
 
 In 2021 a group of 76 third-year undergraduate students, many of whom are prospective educators, designed six distinctly different accessible, open-access digital tools to “crip sex education” in partnership with disabled, Deaf, and queer community-based activists. This experiential education project, called “Cripping Sex Education: Developing Digital Tools for Disabled, Deaf, and Queer Kids,” began with a public panel discussion.
 
 

No Longer the Only One in the Room

The article is an edited transcription of a three-way conversation, or trialogue, chronicling a collective participation in the emergence and growth of disability studies over the past thirty years. The authors divide their memories into specific sites or “rooms,” both public and private, where they discover the power and pleasure of uniting to create change. They map a journey from uncertainty and isolation in the past to solidarity and support in the present which sustains them as colleagues and friends. Along the way they mark moments of institutional acceptance and collaborative innovations. They celebrate their particular form of interdependence, an expertise that comes from their singular and joint observations of their lives as disabled women and academics. They claim their place in a world that still wants to ignore or exclude them, in the hopes that this claiming will continue to make space for disability scholars and activists of the future.

Students as Advocates for the Integration of Disability Curricula in Medical Education.

To the Editor: People with disabilities (PWD) constitute the United States’ largest minority at approximately 12%–30% of the population. 1 PWD are recognized as important consumers of health care, but also as a health disparity demographic experiencing significant barriers. 1 Despite this, only a fraction of medical schools report curricula on disability, and research demonstrates strong bias among physicians. 2,3 Given the current lack of requirements or guidelines on disability training for physicians from governing bodies in medicine, we believe that trainees should advocate for disability inclusion and representation in medical education. As medical students working toward change at our institution, we recommend the following actionable steps: Engage with the local disability community to gain an understanding of the social determinants of health for PWD, as well as identify programs and resources that improve their autonomy and quality of life. At our institution, we collaborated with disability activists and faculty to develop and teach 4 classes on disability issues in health care for preclinical students. Establish a group for students with disabilities and their allies to engender solidarity and recognize disability as an identity deserving of respect and appreciation. Our group stays active both locally and nationally through service, outreach, and political advocacy. Advocate for recruitment of patient instructors with disabilities to provide formal exposure to PWD and dismantle bias. Inclusion of PWD as teachers educates students on the expertise they have about their disabilities and lives. We have pushed for inclusion of PWD in our training on diversity, cultural sensitivity, and clinical skills. Understanding disability history and perspectives will better prepare future physicians to rectify and prevent health inequities experienced by PWD. Trainees as agents of change have the potential to transform medical education to support the needs of PWD in their communities and society at large. Acknowledgments: The authors thank Christopher Lunsford, MD, for his mentorship.

Editorial: A Call for Discourse on Social Justice and Disability

By Andrea Perkins Nerlich, Catherine A. Anderson. The Co-Editors-in-Chief of RCEJ are calling on rehabilitation educators, practitioners, disability allies, and disabled activists to contribute to the discourse on social justice and disability.

Political intersectionality and disability activism: Approaching and understanding difference and unity

Social movement scholars have increasingly examined how political intersectionality helps reveal and explain whose issues and interests are marginalised or privileged within particular activist spaces and discourses. Hitherto, much of the intersectional analysis into social movements has interrogated questions of sameness, difference and power in relation to feminist, anti-racist and queer organising; this article builds upon our knowledge of social movements and intersectionality by exploring the perceptions and experiences of disability activists in the UK. The research draws upon 24 semi-structured interviews undertaken with disability rights activists, finding that a traditional emphasis on unity means that those who are multiply marginalised still experience a silencing of issues and interests of importance to them; moreover, while there is a recognition of difference, this is principally understood in relation to impairment or social class. Simultaneously, the research finds evidence of an increasing tendency amongst disability activists in the UK to engage with intersectionality, both in how they understand disability but also in terms of how they organise.

Citizenship, Rights and Persons with Disabilities in India

The neo-liberal discourse of rights focuses on rights-based legislations and empowers citizens to place claims on the state. The push toward a rights-based approach in India by disability activists sought to shift the underlying power dynamic between citizens and the state through legislation. However, such rights-based discourses underplay or negate intra-group power politics that influence claims to rights and entitlements. This paper attempts to explore the ways in which disability groups in India engaged with the concept of citizenship in the debates prior to the passage of the Rights of Persons with Disabilities Act 2016. As citizenship creates whole categories of people who are subject to the government’s authority, an attempt will be made to see how actors within the rights movements interacted among themselves and with the state, to ensure welfare provisions as well as citizenship rights for different groups of people from different impairment categories.

Discursos políticos de activistas disidentes de la discapacidad en Chile

The present study is part of a microsociological research conducted between 2016 and 2019 in the context of the emergence of new social movements triggered in post-dictatorship Chile. Specifically, it deals with the emergence of the sociopolitical discourses of people labeled as disabled. The intention is to present the construction of the political discourses of dissident disability activists living in Chile. For this purpose, we value these discourses as counter-hegemonic or from the margins; that is, they do not follow the approaches of dominant medical and citizen interpretations. We used a qualitative and feminist methodological approach on the bodily itineraries of eleven activists. This allowed us to further explore the group’s life trajectories, social discourses, and political praxis. The political discourses of dissident disability activists living in Chile are part of the claims of non-standard corporealities to access the public and cultural scene. It is imperative to generate counter-hegemonic discourses incorporating diverse knowledge in order to advocate for the rights of people who relate to difference and to make visible the structural inequalities that affect subaltern collectives. The article incorporates a situated, feminist, and Latin American perspective to address a phenomenon of growing interest in the social sciences, and presents reflections that contribute to both academia and activism.

Disability inclusive employment in urban Malawi: A multi‐perspective interview study

AbstractThe paper presents interview data from Malawian government representatives, trade unionists, employers and people with disabilities from the country's largest cities Lilongwe and Blantyre. Findings relate to the gap between the discourse of employers and government officials and that of workers with disabilities. Firstly, we find a policy‐based assumption of a formalised workforce that is not representative of the predominantly informal disabled workforce. Secondly, the disruptive, intermittent and often reactive nature of non‐governmental organisation (NGO) interventions can limit long‐term inclusivity agendas and undermine the work of disabled activists in Malawi. Lastly, we present findings on the stigmatised nature of disability in these urban centres. We find that stigma is economic: Urban workers with disabilities are discriminated against locally by employers, landlords and banks on assumptions they will not produce or earn enough to meet productivity demands, rent or repayment costs.

Resisting the rhetoric of indexing: disability, access, and the 2005 Tennessee State Capitol sit-in

ABSTRACT Healthcare has traditionally been structured by biopolitical processes of indexing. The rhetorical practice of indexing stratifies bodies into risk categories and determines who has access to services and at what cost. Indexing generalizes features of identity, artificially classifying them into risk categories to maximize corporate profits. This dubious process accounts for traditional matters of health such as disease and illness, but also assesses broad demographic markers such as gender, race, and disability. This essay engages an attempt by disability activists to resist such practices through a 2005 sit-in at the Tennessee State Capitol.

‘There is power in the cry of a woman’: the approach of African women with disabilities to leadership

ABSTRACT African disability activists and leaders play a key role in addressing the pervasive stigma, discrimination, and exclusion that is encountered by people with disability. An understanding of the leadership influences, styles, and priorities of female disability leaders may encourage and support the African disability movement and women’s involvement in it. The current study undertook a series of in-depth interviews that explored the life stories and leadership experiences of seven female disability leaders from Tanzania, Ghana, and Kenya. Findings indicated that although the participants had experienced significant discrimination and pain as women with disability (WWD), they had been able to draw strength and conviction from their trauma and use their experiences to connect with other WWD. The participants described leadership as the service to others and they understood the importance of unity, hope, participatory leadership, and a commitment to a common goal and purpose. Through their leadership, they sought to empower individual WWD, as well as shape a united disability movement with a strong political voice. These findings demonstrate the importance of understanding the role women can play in disability leadership, serving as a hopeful reminder that trauma and marginalization can be reconceptualized as a source of strength and compassion.

Disabled youth participation within activism and social movement bases: An empirical investigation of the UK Disabled People’s Movement

Understanding disabled youth activism is key for improving young disabled people’s participation in politics and social change. Young disabled people require opportunities to situate historical and biographical experiences within broader socio-economic contexts. This will lead to a politicised consciousness surrounding disability, emancipation and social justice. This article presents empirical data from the first study on young disabled people’s contemporary position within the UK Disabled People’s Movement. It critically assesses three areas pertinent to youth activism: activist membership, social movement organisation and future considerations for activism. This allows for an exploration of how young disabled activists navigate collective action, influence activist claims and demands and understand the issues for sustaining a disabled people’s social movement. The article illustrates young disabled activists’ desire to disrupt their current position within the UK Disabled People’s Movement and bring into focus a future where young disabled people’s contributions to activism and social movements are accessible, valued and influential. The article argues that a failure to support young disabled people’s participation within social movements will have an adverse impact on their political identities.

Unlearning Ableism: Design Knowledge, Contested Models, and the Experience of Disability in 1970s Berkeley

Abstract This article explores the design pedagogies developed through the alliance between disability activists at the Center for Independent Living (CIL) and a number of faculty led by Raymond Lifchez at U.C. Berkeley in the 1970s and 80s. Founded by Bay Area activists including disabled students at U.C. Berkeley, the CIL provided a critical platform for advocacy and services within the disability community. In a number of seminars and studios, Lifchez and others followed the initiatives of the CIL, documented the transformation of the built environment by disabled individuals in Berkeley, and incorporated their experiences in the design process. Rather than approaching disabled individuals as bearers of special needs, a number of specific pedagogical strategies explored their expertise and resourcefulness and incorporated them as informants, consultants, and designers. Supported by archival sources, oral histories, and publications of the period, this article contributes to ongoing discussions concerning the relationship between design and the environmental and social construction of disabilities as well as to the definition of design and architecture expertise. These pedagogies critically mobilized models to advance partial and flexible design interventions and simultaneously transformed the classroom into a model that challenged the naturalization of able-bodiedness in the built environment.

Views on disability and prenatal testing among families with Down syndrome and disability activists: A comparative analysis of interviews from Germany and Israel

The prenatal genetic testing arena has witnessed great changes over the past decades and has been the focus of extensive discussion of its ethical, legal, and social implications. Germany and Israel were previously known for strongly contrasting regulations and attitudes of both professionals and laypeople towards genetic testing. Based on qualitative analysis of 37 semi-structured interviews, this study compares German and Israeli family members of individuals with Down syndrome and disability activists, thereby examining the interplay between lived experience and cultural scripts and their impact on the formation of personal views toward disability and prenatal testing. We have found that the differences between Germany and Israel remain, despite the emergence of new technologies, and that family members and disability activists reflect the norms of their socio-cultural environments, thereby emphasising the role society plays in shaping the views of those with direct experience of disability.

Disability Rights and Wrongs in Uganda

Uganda’s disability story is justly celebrated. The country has ratified some of the most progressive disability laws and policies in the world, and it is home to a robust disability activist movement. Disability is also highly visible in mass media and public life. At the same time, however, these laws, activism, and publicity have not significantly changed the lives of most disabled Ugandans. Uganda’s story is important in its own right, but it also illustrates some of the possibilities and limitations of the rights-based paradigm that now dominates disability activism and politics around the world.

Strengthening Community Participation by People With Disabilities in Community-Based Group Homes Through Innovative Action Research

In the US and beyond, a paradigm shift is underway toward community-based care, motivated by changes in policies, payment models and social norms. A significant aspect of this shift for disability activists and policy makers is ensuring participation in community life for individuals with disabilities living in residential homes. Despite a U.S. government ruling that encourages community participation and provides federal and state funding to realize it, little progress has been made. This study builds on and integrates the expanded model of value creation with relational coordination theory by investigating how the resources and relationships between care providers, adults with disabilities, family members, and community members can be leveraged to create value for residents through meaningful community participation. The purpose of our community case study was to assess and improve the quality of relationships between stakeholder groups, including direct care staff and managers, residents, family members, and the community through an action research intervention. This study took place in a residential group home in a Northeastern US community serving adults with disabilities from acquired brain injury. A pre-test post-test design was used and quantitative assessments of relational coordination were collected through electronic surveys, administered at baseline, and post-intervention. Direct care staff, supervisors, the house manager, and nursing staff completed the survey. Qualitative data were collected through focus groups, change team meetings, and key informant interviews. Direct care staff formed a change team to reflect on their baseline relational coordination data and identified the weak ties between direct care staff, family members, and the community as an area of concern. Staff chose to hold a community-wide open house to provide an opportunity to foster greater understanding among staff, residents, family, and community members. The change team and other staff members coordinated with local schools, business owners, town officials, churches, and neighbors. The event was attended by 50 people, about two-thirds from the community. Following the intervention, there was an increase in staff relational coordination with the community. While statistical significance could not be assessed, the change in staff RC with the community was considered qualitatively significant in that real connections were made with members of the community both directly and afterwards. Despite a small sample size, a residential setting where management was favorable to initiating staff-led interventions, and no comparison or control group, our small pilot study provides tentative evidence that engaging direct care staff in efforts to improve relational coordination with community members may succeed in building relationships that are essential to realizing the goal of greater participation in community life.

A Threat to National Security? The Legal Dispute between ‘Red Rudi’ and the British Home Office, 1970–1971

Initially admitted to the United Kingdom on a short-term visa, the disabled German student activist Rudi Dutschke applied for a student visa in the United Kingdom in 1970. His application was rejected on grounds of national security. Dutschke was one of the first aliens who made use of his right to appeal, but the closed material procedure applied in his case meant that critical evidence remained undisclosed. Far from being ‘simply a historical curiosity’, the Dutschke case powerfully illustrates how two social dynamics at the centre of the moral panic in the late 1960s – immigration and student protest – were linked and framed as a threat to the nation.

Challenging "The Hands of Technology": An Analysis of Independent Living for People with Intellectual Disabilities.

Technology has been holding out the promise of facilitating greater autonomy and improving care for people in a situation of dependency. This trend is expected to grow and this is happening precisely at a time of expansion of the so-called Independent Living paradigm. In this context, however, disability activists are generally suspicious of approaches based on being “left” in the hands of technology. They instead advocate for “subordinating hands” to their ability to decide, a principle that stands in tension with the field of intellectual disability, where individuals are perceived as intrinsically unable to make “good decisions”. Therefore, the aim of this paper is to provide insight into the uses and developments of technologies with regard to care and autonomy for people with intellectual disabilities. By ethnographically examining the case of a specific technology; QR (quick response) codes in the context of an independent living service, and in the framework of Science and Technology Studies and Disability Studies, the paper reveals the role and possibilities of care and autonomy technologies for people with intellectual disabilities. Based on these findings, and by thinking from what we could define as “within a sociotechnical assemblage”, this paper aims to rethink the ways in which technologies for independent living can be used in the field.

Implications of internalised ableism for the health and wellbeing of disabled young people.

When conceptualising health and wellbeing among disabled people, the experience of internalised ableism must be considered. In this article, we argue that internalised ableism is indeed a health and wellbeing issue that materialises in numerous complex psychological, social and physical consequences. For theoretical grounding, we utilise critical disability studies, feminist theorising about solidarity and disability activists’ concept of ‘disability justice’. We draw on data from focus‐group interviews with disabled young people, comprising ten men and eleven women, with different impairment types. The focus‐group discussions revolve around various aspects of their wellbeing and participation in society, and possible and actual threats to the wellbeing of disabled children and young people in general. The analysis reflects various negative effects of internalised ableism on the identity, health and wellbeing of disabled young people. Family support, access to safer spaces and positive peer interactions are factors defining how internalised ableism develops, is maintained or defied. Peer support and solidarity are strong indicators of promoting healing from internalised ableism. We argue that disability scholars need to address the health and wellbeing of disabled people in an ableist world.