Table of contents(12 chapters)
Introduction: Exploring the Opportunities and Challenges of Alliances and Allyship in the Lives of People with Disabilities
Part I Structures and Systems That Shape Alliances
International Rights and Local Realities: Transnational Allies of the Disability Rights Movement in China
Purpose: The purpose of this chapter is to scrutinize the apparent alliance between international and local disability rights movements by contextualizing the process in which the disability rights model is being diffused globally. It seeks to critically examine the transplantation and promotion of the international disability rights movement's rights-based model in China.
Approach: This chapter draws from 18 in-depth interviews with local and international disability rights activists through multisite ethnographic fieldwork in China in 2019.
Findings: This chapter finds that despite opening up spaces for resistance and emancipation locally, the international disability rights movement nevertheless constitutes what I call an enclave of rights that insulates the international rights model from the political, social, and economic realities on the ground. In the case of China, the authoritarian politics that define the relationship between the state and civil society, as well as the economic vulnerability of people with disabilities in the post-socialist market economy, limit, if not invalidate, the rights model espoused by the international disability rights movement.
Implications: The findings of this chapter challenge and complicate the current scholarship of the transnational disability rights movement beyond its normative claims of emancipation. They also explore potential spaces and direction for building a new transnational alliance that takes into account the local experience of disability in a rapidly globalized world.
Allies, Enemies, or Indifferent? The Disability and Older Persons' Movements under Neoliberalism in Jamaica
Purpose: Researchers and advocates alike have noted that persons with disabilities and older persons are the two groups most marginalized by neoliberal economic policies and therefore could come together as a broad-based movement against the roll back of their rights. Yet, these two groups fail to collaborate, and instead compete against one another for an ever-shrinking pool of benefits. This chapter explores the barriers to their collaboration within the context of structural adjustment in Jamaica.
Methods/Approach: The author engages in a critical analysis of neoliberalism's effect on the advocacy strategies of the disability and older persons' movements in Jamaica based on 32 semi-directed depth interviews, participant observation of numerous events, and a survey of media written by local advocates.
Findings: The disability movement makes claims on behalf of their members by focusing on the potential returns that society will gain by providing the opportunities that will make young persons with disabilities productive employees over their lifetime. The older persons' movement advocates by portraying themselves as “vibrant” and worthy of social investment because of the contributions they make. Both of these arguments for inclusion are also exclusionary. The disability movement excludes older persons as potential contributors and the older persons' movement similarly excludes persons with disabilities.
Implications: The only way neoliberalism will successfully be rolled back and universal rights returned is if the disability movement and older persons' movements build an alliance that is more inclusive, including of one another, by rejecting the language of investment and productivity, and instead focus on rights and inherent dignity.
Impasses of Disability Alliance Building in Bulgaria: Successful Phantom Activism and Toxic Grassroots Mobilization
Purpose: In this chapter, I explore the current activist disability landscape in Bulgaria, focusing on its apparent insusceptibility to change. My objective is to examine the interplay between the conflicting parties, focusing on the factors that conditioned their successes and failures.
Methods/Approach: Relying mainly on directed content analysis, I analyzed website publications, online discussions, official statements released during the protests, as well as 18 interviews of mothers of children of disabilities and the data from five focus groups.
Findings: On the local disability scene, we discern two types of collective action – phantom disability activism and toxic grassroots mobilization. The first one held strongly to the traditionally construed notion of disability as confined in the need-based system and defined solely as medical condition. The second one – although very important for putting on the agenda issues as personal assistance and demedicalization – embraced deeply disturbing and toxic activist rhetoric, giving rise of an “abled-disabled” citizen thus reinforcing neoliberal images of human worth and failure.
Implication/Value: This chapter offers a closer look at the different meanings and implications of success, failure, and enabling or halting political renewal with regard to disability. On an empirical level, it adds more to the existing knowledge about the opportunities for, the role, the outcomes, and the specific features of alliance building in a context as Bulgaria, which presents us with specific combination of socialist legacies, post-socialist ways of abandoning disabled people, and, at best, short-term and transient embodiments of the “Nothing about us without us” tenet.
Purpose: Artists with disabilities use their bodies and minds to create art. Yet, the prevailing cultural narrative that art is “therapeutic” for people with disabilities shifts attention from their creative accomplishments to their disabilities. Some ally organizations attempt to challenge the narrative that art is merely therapy for people with disabilities. However, drawing on narratives of “helping” people with disabilities attracts funding. This chapter examines how organizations navigate empowering allies while still maintaining funding.
Methods/Approach: This chapter uses narrative analysis of material accessed through a nonprofit arts-based disability ally organization's website to address two research questions: 1. How do ally organizations both draw on and resist cultural narratives of disability in order to garner public support?; and 2. How do personal narratives of disabled artists associated with ally organizations support and/or resist organizational and cultural narratives about the connection between disability and art?
Findings: The organization uses narratives to address important and sometimes conflicting goals. Personal narratives from artists with disabilities that are available through the website tell a range of stories about art and disability. The organization draws on these heterogeneous stories to position itself as an ally. By including such personal narratives on its website, the organization challenges the cultural narrative that the art produced by disabled artists is merely therapeutic.
Implication/Value: Much of the work on allyship focuses on how individuals can be allies. Examining ways in which organizations frame themselves as allies can help us to more fully understand allyship on multiple levels of social life.
Purpose: To examine empirical patterns of participation of allied groups in disability protests from 1970 to 2016 in the United States.
Methods/approach: Uses event history to analyze 1,268 cases of disability protests quantitatively. Internal and external allied groups and types of individual protestors are analyzed over the entire period and by decade.
Findings: Multiple impairment, single issue organizations were a more common type of “internal” ally than were either single impairment, multiple issue organizations or multiple impairment, multiple issue (truly cross-disability) organizations. External ally groups with a wide range of concerns were less common than internal ally groups but were most represented during the 1990s. Veterans groups were the most common type of external ally, while parents were the most common type of individual allies.
Implications/values: Two topics need more attention: How ally participation in disability protests compares to that in protests in other social movements, and what types of changes over time emerge. Explanations relating to movement trajectories and other social movement characteristics are presented, and the need for a more nuanced conceptualization of protest allies is discussed.
Part II Relational Dynamics of Alliance Building
Nothing about “Us” without Whom? (Re)Cognizing Alliance between Disabled People and Care Workers in Direct-funded Attendant Services
Purpose: This chapter problematizes the philosophical origins of direct funding models in a normative conception of independence that ignores and obscures the fundamentally relational nature of care work.
Approach: The study adopts a reflexive ethnographic methodological approach. In-depth, semistructured interviews were conducted with 19 participants variously involved with direct-funded attendant services (disabled “self-managers,” “attendant” employees, other members of self-managers’ support networks, and program staff). Additional data sources included the author's reflexive journaling and publicly available policy and program materials. The present analysis interrogated the impact of systemic constraints (i.e., limited funding) on the organization and management of attendant services.
Findings: The data illuminate how systemic constraints draw the interests of self-managers and attendants into tension, despite the affective relationality of the work they do together. The findings present four strategies self-managers adopt to maximize support hours, including: splitting shifts, strategic hiring, dynamic resource management, and supplementing remuneration. These findings suggest it is not vulnerability to each other that represents an ongoing concern for self-managers and attendants, so much as exploitation by a system that capitalizes on the oppression of both groups.
Implication/ Value: Disabled people and care workers have been and continue to be constructed as opposing interest groups. However, there is great potential in disabled people and care workers joining a united front to lobby for their common, often interrelated interests. Direct funding models are an important evolution of support services, but where they fail to attend to the relational nature of care work, we must continue to pursue more inclusive solutions.
Purpose: Due to the developmental nature of autism, which is often diagnosed in preschool or elementary school-aged children, non-autistic parents of autistic children typically play a prominent role in autism advocacy. However, as autistic children become adults and adult diagnoses of autism continue to rise, autistic adults have played a more prominent role in advocacy. The purpose of this chapter is to explore the histories of adult and non-autistic parent advocacy in the United States and to examine the points of divergence and convergence.
Approach: Because of their different perspectives and experiences, advocacy by autistic adults and non-autistic parents can have distinctive goals and conflicting priorities. Therefore, the approach we take in the current chapter is a collaboration between an autistic adult and a non-autistic parent, both of whom are research scholars.
Findings: The authors explore the divergence of goals and discourse between autistic self-advocates and non-autistic parent advocates and offer three principles for building future alliances to bridge the divide between autistic adults and non-autistic parents.
Implications: The chapter ends with optimism that US national priorities can bridge previous gulfs, creating space for autistic adult and non-autistic parent advocates to work together in establishing policies and practices that improve life for autistic people and their families and communities.
Becoming Allies: The Transmogrification of the Role of American Sign Language/English Interpreters during the Deaf President Now Protest
Purpose: In this chapter, I explore how American Sign Language/English interpreters came to enact an ally role with members of the American deaf community during the 1988 Deaf President Now (DPN) protest. The DPN protest, led by students at Gallaudet University in Washington, DC, was a historic moment in the deaf community's struggle for civil rights (Christiansen & Barnartt, 1995). During the events that unfolded over the week-long rebellion, students engaged in a variety of claims-making activities (Lindekilde, 2013), such as participating in media interviews and organizing rallies. To share their message with the world, the deaf protesters developed alliances with American Sign Language/English interpreters, who mediated a wide variety of protest-related activities.
Method: The data I analyze in this chapter come from (1) archival review and (2) semistructured interviews I conducted with DPN stakeholders, including interpreters and protesters.
Findings: Through these data, I explore how the protesters and interpreters came to develop shared understandings and expectations of allyship, including the roles that interpreters enacted in the protest.
Implication/Value: I frame this discussion within the context of a variety of metaphors that have been used to describe the role of signed language interpreters (Roy, 1993, 2002) and the concept of role-space (Llewellyn-Jones & Lee, 2014) to demonstrate the process of interpreters becoming allies in contentious political settings.
Purpose: We critically examine the idea of neurodiversity, or the uniqueness of all brains, as the foundation for the neurodiversity movement, which began as an autism rights movement. We explore the neurodiversity movement's potential to support cross-disability alliances that can transform cultures.
Methods/Approach: A neurodiverse team reviewed literature about the history of the neurodiversity movement and associated participatory research methodologies and drew from our experiences guiding programs led, to varying degrees, by neurodivergent people. We highlight two programs for autistic university students, one started by and for autistics and one developed in collaboration with autistic and nonautistic students. These programs are contrasted with a national self-help group started by and for stutterers that is inclusive of “neurotypicals.”
Findings: Neurodiversity-aligned practices have emerged in diverse communities. Similar benefits and challenges of alliance building within versus across neurotypes were apparent in communities that had not been in close contact. Neurodiversity provides a framework that people with diverse conditions can use to identify and work together to challenge shared forms of oppression. However, people interpret the neurodiversity movement in diverse ways. By honing in on core aspects of the neurodiversity paradigm, we can foster alliances across diverse perspectives.
Implications/ Values: Becoming aware of power imbalances and working to rectify them is essential for building effective alliances across neurotypes. Sufficient space and time are needed to create healthy alliances. Participatory approaches, and approaches solely led by neurodivergent people, can begin to address concerns about power and representation within the neurodiversity movement while shifting public understanding.
Purpose: This chapter proposes narrative allyship across ability as a practice in which nondisabled researchers work with disabled nonresearchers to co-construct a process that centers and acts on the knowledge contained in and expressed by the lived experience of the disabled nonresearchers. This chapter situates narrative allyship across ability in the landscape of other participatory research practices, with a particular focus on oral history as a social justice praxis.
Approach: In order to explore the potential of this practice, the author outlines and reflects on both the methodology of her oral history graduate thesis work, a narrative project with self-advocates with Down syndrome, and includes and analyzes reflections about narrative allyship from a self-advocate with Down syndrome.
Findings: The author proposes three guiding principles for research as narrative allyship across ability, namely that such research further the interests of narrators as the narrators define them, optimize the autonomy of narrators, and tell stories with, instead of about, narrators.
Implications: This chapter suggests the promise of research praxis as a form of allyship: redressing inequality by addressing power, acknowledging expertise in subjugated knowledges, and connecting research practices to desires for social change or political outcomes. The author models methods by which others might include in their research narrative work across ability and demonstrates the particular value of knowledge produced when researchers attend to the lived expertise of those with disabilities. The practice of narrative allyship across ability has the potential to bring a wide range of experiences and modes of expression into the domains of research, history, policy, and culture that would otherwise exclude them.