New Narratives of Disability: Volume 11

This chapter investigates how we have come to know what we know, in the United States, about the terms “ability” and “disability” through the story of Helen Keller and her teacher Anne Sullivan Macy. What is the narrative of Helen Keller as told through children’s literature? How might the ways in which her life is presented contribute to stereotypes of what it means to be disabled? What, if any, are the ways in which authors of these books resist writing about her as someone who “overcame” her disabilities? How is Helen Keller’s relationship with her teacher, Anne Sullivan, portrayed and what might this representation contribute to the concepts of dependence and interdependence?

This project provides a sociological analysis of common themes through a content analysis of 20 children’s books on Helen Keller.

The theme of the widely circulating “story of the water pump moment” (when Keller realizes that hand movements signify language) depicts a one-sided relationship of Helen Keller and her teacher Anne Sullivan Macy. This informs the narrative representations of Anne Sullivan Macy as “miracle worker” and Helen Keller as “miracle child.” Another theme is the “complexities of resistance,” which shows how these narratives uphold the stereotype that Helen Keller needed to “overcome” her disabilities while also resisting this notion and showing how she also helped Anne Sullivan Macy.

This demonstrates how widely circulating stories such as those about Helen Keller shape what we know about what it means to be abled or disabled, challenges simplistic binary understandings of the disability experience, and points to the power of narratives to shape systems of beliefs.

This chapter focuses on the experiences of disabled Tamil and Sinhalese women in Sri Lanka.

Using fieldwork observations and in-depth interviews obtained through Community-Based Rehabilitation (CBR) programs over 13 months across four distinct districts in Sri Lanka, we examine complex sociocultural issues at the intersection of gender and disability.

These women’s narratives about their lives show the physical and social barriers related to the accessibility of everyday activities, and also the complex gender norms relating to social expectations to stay hidden from public view, contradictory messages around love and marriage, and reactions to and consequences of being disabled women in public.

The results support calls to prioritize disabled voices in disability research in the Global South, which is currently dominated by a CBR approach in the name of “development.” These data also show the need to systematically address power relations currently at work in policies, practices, and communities that perpetuate disablement; document the need for communities and research to be more inclusive; and obligate scholars and practitioners to be more aware of how the CBR context may aim for development and change, yet often maintain highly gendered economic, political, and social processes of isolation. This project illustrates the ways in which careful attention to personal stories can illuminate complex socio-cultural processes. The chapter also brings voices of women in the Global South into the discourses on narratives and disability, both of which are dominated by perspectives from the industrialized west.

In this chapter, we examine the reflexive interplay of cultural, institutional, organizational, and personal narratives to examine more completely the ways in which successful and normative participation in schooling signals the ability and opportunity to participate in life beyond the institution.

Using narrative analysis techniques, we analyzed the interviews of eight college students who described their experiences with test anxiety.

Each individual story and experience points to the ebb and flow of participation and exclusion in the activities of schooling as well as a full participant in life more broadly. Significantly, we find that what it means to be a successful student in higher education has bearing on what it means to be a productive and worthwhile citizen, daughter, son, and partner.

This research adds needed complexity to the study of test anxiety by highlighting the ways in which higher education settings rely on the medical model of disability to enact their own gatekeeping mechanisms in an effort to “legitimize” disability through acknowledgment and accommodation. Findings point to the ways in which culturally circulating stories of disability can shape organizational responses and how these can shape personal experience.

Rates of less perceptible social–behavioral–emotional disorders thought to be based in neurobiological brain differences have burgeoned, though much of disability studies remains focused on the need to challenge compulsory able-bodiedness. This chapter examines instead diverse families living with adult sons’ and daughters’ invisible disabilities, asking how mothers may challenge compulsory able-mindedness.

This chapter is based on 15 in-depth interviews conducted in 2017 and 2018 with mothers originally interviewed between 2003 and 2008.

The accounts foreground tensions for those at the boundaries of “normality” in a culture that valorizes citizen’s independence, productivity, and heroic overcoming of any inability. Mothers of “precariously normal” adult sons and daughters invited to reflect on their earlier accounts reveal both the power of such dominant narratives and the possibilities to disrupt and challenge this public storytelling.

Findings of this study point to the alternative narratives and identities sought by disability studies and bring invisible social–behavioral–emotional disabilities into discussions that have largely centered on visible physical disabilities. These findings also underscore the complex similarities and differences in families’ experiences of disability across class and race divides, while suggesting the need for institutional change and greater, less punitive, public resources.

The goal of this chapter is threefold: to bring the context of disability into literature on fathering; to bring voices of fathers into scholarship on parenting children with disabilities; and to examine what individual stories about a very particular kind of fatherhood might reveal about the cultural narrative of the good father, and the reflexive nature of cultural narratives and individual stories.

Transcripts of in-depth, life course interviews with 14 parents of seven young adults, and older teens with severe impairments associated with a variety of diagnoses were analyzed using narrative analysis strategies. Transcripts of the fathers’ interviews provided primary data and transcripts of the mothers’ interviews were used as supplemental material.

Fathers included in this study drew from normative notions of masculinity and widely circulating cultural narratives of fatherhood, even while participating in caregiving tasks that are at odds with this narrative. Five specific narrative tensions that highlight cultural understandings of the “good father” were evident in these stories: (1) evoking masculinity in the context of care work; (2) providing financial security in the context of the high cost of disability; (3) maximizing potential in the context of realistic expectations; (4) protecting in the context of uncertainty and helplessness; and (5) finding a “new normal” in the context of the unexpected.

Findings add to what is known about mothering children with disabilities. Results also add a new dimension to fatherhood studies by illustrating how widely circulating cultural narratives of fatherhood are adapted in stories about fathering children with life-long assistance needs, and how individual stories might serve as a platform for social change.

This chapter explores the development of organizational narratives of identities for embodying the qualified jobseeker with disabilities in the French job market.

While the concept of “organizational narratives of identities” has primarily been used to study the access to services to individuals with “troubled identities,” my study looks at how organizational narratives are shaped in labor market intermediation for the professional integration of workers with disabilities.

In this context, fitting the right formula story goes beyond embodying the morally “deserving” target population in order to encompasses corporate-related expectations, such as demonstrating resilience and grit, as well as disclosure-related expectations, that navigates the contradictory injunction of the French antidiscrimination system to both demonstrate a commitment to diversity and to remain indifferent to differences.

This chapter highlights the ways in which the cultural narratives surrounding disabled identities, workers’ identities, and the French cultural ideology of “indifference to differences” were translated into specific recruitment advice on the job market, as well as into organizational changes that favored the creation of a disability-friendly buffer zone in corporations: the activist disability manager. The chapter also shows how widely circulating cultural narratives shape, and are shaped by, organizational policies and procedures that can in turn shape personal experiences in the workforce.

The tendency to view disability through a medical lens leads to deficiency narratives which have pervasive consequences throughout life. This chapter focuses on impacts of these narratives on postsecondary education opportunities for individuals with intellectual/developmental disabilities (I/DD). Specifically, we examine how disability as deficiency narratives translate into beliefs and relationships for students in Virginia Commonwealth University (VCU) Academic and Career Exploration-Individualized Techniques (ACE-IT) program in College.

ACE-IT in College is an inclusive postsecondary education program for students with I/DD. We reviewed the clashing narratives students with disabilities face from faculty, staff, other students without disabilities, and family members. In order to analyze postsecondary experiences of participants, a content analysis of the ACE-IT Spring 2015 semester was conducted using archival data of education coach notes, employment case notes, mentor case notes, VCU faculty evaluations, work supervisor evaluations, and parent and student survey responses. Ten case studies, each of an enrolled ACE-IT student, were developed and analyzed.

Three themes surrounding this program emerged: Inclusion (the inclusive nature of the ACE-IT program encourages independence), exposure (the exposure of faculty to students with disabilities, the exposure of these students to a range of social relationships and community participation), and exclusion (the continuing power of deficit narratives).

Because narrative analysis of consolidated themes suggests specific program recommendations, this study highlights the research potential of stories to identify program characteristics and needs for program improvement.

Despite the legacies of many talented artists with disabilities, art programs for people with disabilities are consistently framed as important because of their “therapeutic” value. Such framing is a well-established way for organizations to garner support from publics drawn to images of disabled people as tragic victims and such programs as heroic in offering help. Some non-profit art programs, however, resist this narrative.

Data come from the organizational web-site of a community-based non-profit disability centered arts education organization that takes active steps to challenge traditional tragedy narratives. Data show how the organizational narrative does this by affirming the value of disabled artists and by casting as villains the stigma, discrimination, and misinformation surrounding people with disabilities.

While this organization constructs a narrative that portrays society and art spaces as victims in that they miss out on the contributions to art that people with disabilities can produce, the organization nonetheless must also offer to community stakeholders and potential donors reasons for its existence.

This examination highlights the ways in which this organization navigates the competing demands of fund raising and disability advocacy by constructing organizational narratives that affirm people with disabilities while still articulating the value of the organization to the wider community. This suggests the complex work narratives do and the tensions that can arise when narratives serve multiple purposes for multiple audiences.

This chapter examines how personal testimonies at four town hall listening sessions on the ADA Amendments Act (ADAAA) proposed regulations reflect and affect the institutional narrative of “who counts” as disabled, and “what counts” as a reasonable accommodation in the United States.

I use the full transcripts of four town hall meetings to analyze the stories told.

Despite changes to public policy intended to broaden the meaning and scope of “disability,” narrative analysis demonstrates how difficult it is to change the fixed and narrow institutionalized beliefs about who counts as “really disabled” and therefore in “real need” of accommodations.

This study suggests a theoretical framework for conceptualizing disability; highlights the importance of narratives in public policy; and suggests the need for more complex understandings of what constitutes reasonable accommodation of disability in the workplace. The study illustrates the value of a narrative approach to understanding disability policy and policymaking more generally.

In this chapter, I explore connections between institutional and personal narratives of treating chronic pain with prescription opioids.

I explore how stories told in a Food and Drug Administration public hearing construct moral boundaries around different kinds of pain patients and justify a label change intended to reduce prescribing of opioids to people with chronic pain. I then examine how personal narratives, acquired through interviews with chronic pain patients who rely on opioids, both conform to and challenge the institutional narratives told in the hearing and work as subversive stories. Additionally, I consider how institutional and personal narratives of chronic pain shed light on intersections and conflicts between the medical and social models of disability.

The “invisible disability” experience of chronic pain highlights the complex entanglement between the struggles associated with impairment emphasized by the medical model, and those stemming from cultural and structural barriers emphasized by the social model.

I conclude with a discussion of the methodological value of examining narratives such as those of chronic pain and disability at multiple levels of social life. This study contributes to efforts to broaden disability discourse to include experiences such as chronic pain that are poorly represented in disability scholarship.

To understand how young men with disabilities react against overarching narratives of independence during the transition to adulthood in independent living and interdependent living arrangements with parents in order to address the gap between transition policy and real lived experience.

I use life history interviews and ethnographic “go-alongs” with nine men with mobility impairments to understand how they experience and make sense of independent living and interdependence during the transition to adulthood. Transcripts and field notes were analyzed using grounded theory methodology.

Data reveal diverging pathways participants took to interdependent living situation, rooting before transition, and returning during transition. These pathways are shaped by logics of residential decision-making: accessibility expectations and individual adaptability. Those who rooted before transition developed accessibility expectations that motivated them to remain living their parents’ homes while those who returned during transition relied on individual adaptability to overcome physical inaccessibility. Individual adaptability did not overcome inaccessibility – all returned to their parents’ homes. Pathways shape how each group of participants experienced and made sense of interdependent living arrangements and independent living. Those who rooted before transition found interdependence to be a route to increased independence, and did not consider independent living a marker of adulthood. Those who returned during transition found that the interdependence they experienced increased feelings of dependence.

Experiences and meanings emerging adults with disabilities have during the transition to adulthood reveal the complexity of interdependence and independent living. The pathways and the social forces shaping those pathways to interdependent living arrangements have implications for life course theory and disability policy.

Medicaid home and community-based services (HCBS) support community living for three million disabled people in the United States. As a state-federal partnership, these programs are highly variable across states. Because eligibility determination and services differ from state to state, this Medicaid structure becomes a barrier for those HCBS users whose desired futures include cross-state moves.

I examine narratives of citizenship and personhood for Medicaid HCBS users circulating within policy arenas and explore tensions between these and the stories Medicaid HCBS users tell of their own lives. Specifically, I explore the degree to which narratives about Medicaid HCBS users include an affirmation of the right to cross-state movement. My analysis includes data from public statements from policy makers, legislative texts, organizational framings of Medicaid policy, and 18 semi-structured interviews with Medicaid PCA users who desired or pursued cross-state moves.

I conclude that institutional narratives of Medicaid HCBS users are an inadequate representation of the stories told by those who rely on this program and, in consequence, programs stemming from policy fail to offer services that would allow service recipients to pursue their objectives.

Medicaid HCBS policy is part of a broader story of disability rights progress over the last four decades, making its role as an obstacle to cross-state movement a bit of a paradox. This paradox points to the value of narrative analysis in calling attention to invisible contradictions and the need for institutional and organizational change.

This chapter highlights the complexity of the lived experience of disability through a personal narrative about navigating multiple, often conflicting, identities.

After briefly summarizing the understandings of scholars who maintain that narratives are the primary way in which people establish the identities of self and others, I focus on my story. Although an individual with a disability, scenes from my life demonstrate how I am neither the victim nor the superhero character so common in socially circulating stories about people who are disabled.

This chapter challenges understandings of disability as either a medical condition or a site of social oppression. It demonstrates how narrative analysis can be an important tool for disability scholars and activists, and points to ways in which stories about the complexity of the disability experience disability can be used as tools for resistance and social change.

This chapter grapples with the relationship between dis/ability and narrative inquiry through the authors’ personal stories that push back at the cultural-historical, policy, and professional master narratives of dis/ability in order to contribute to efforts that theorize critical emotion praxis. We ask: what is the relationship between dis/ability and narrative inquiry? What are the lived experiences of those living within a variety of intersectional and emotional dis/ability narratives that resist and navigate the cultural-historical, policy, and professional master narratives of dis/ability at the intersections?

We use a Disability Studies in Education (DSE) paradigm to construct a collective autoethnography that challenges socially circulating cultural narratives of disability.

Our individual and collaborative narratives illuminate: (1) how master narratives impact self, (2) the ways that dis/abled women of color elevate human dignity and spiritual practices in ways that subvert and speak-back to master narratives, (3) the emotional impact of Learning Disability labeling, (4) forms of epistemic and personal experiences at various institutions of higher education, and (5) the liberatory practices manifest from co-created narratives with DSE students concerning disability identity within higher education.

This collaboration contributes to efforts that theorize critical emotion praxis with diverse positionalities of DSE scholars, teacher educators, and professionals within educational contexts. The chapter also suggests ways in which construction of collaborative narratives of resistance can point to paths for positive organizational change.

Using queer/crip theory as a frame, I examine the narratives of 17 mothers raising children with disabilities.

Results show that the mothers’ narratives of an imagined future for their children often involve the idea of success in terms of production and reproduction. However, some mothers do question this idea of normalcy, challenge deeply seated ideas about neoliberal inclusion, and reframe disability as a different way of existing as opposed to a deficient way of being.

The focus of this paper is on how mothers imagine different kinds of social arrangements. Some mothers, instead of embracing success as narrowly defined under neoliberalism, challenge the idea and instead offer queer narratives of parenting. This study illustrates how counternarratives can be constructed to resist prevailing narratives of disability as deficiency.

While web logs often are taken to be “Internet diaries,” unlike diaries that are private and serve only the needs of their authors, public blogs serve as a technological tool, allowing for the formation of Internet communities and challenges to institutional and/or cultural narratives.

I analyzed narratives constructed in two years of blog posts for each of five individuals with Chronic Fatigue Syndrome (CFS). I sought to understand the relationship between personal stories of contested illness and broader illness narratives.

My findings suggest these personal illness stories operate within the artificial confines of the dominant models of a given society. Blogs are used not only as a chronicle of day-to-day happenings, but as a means of engaging with traditional illness narratives, challenging cultural narratives about CFS, and of resisting institutional narratives concerning the illness process.

This study brings voices of people with contested illnesses into the discourse on disability, where their perspectives have historically been poorly represented. The study also suggests that blogs can become sites of resistance and social change by providing a space in which counternarratives can be constructed and circulated.

Employing virtual ethnography and narrative analysis, this chapter uses data drawn from the online social media site, Tumblr, to explore a group of Tumblr users who mostly identify with the complex intersectional identities of LGBTQ+ disabled people of color.

This chapter suggests that narratives are skillfully constructed by this group of Tumblr users in ways that counteract felt or expected experiences of exclusion, invisibility, and stigmatization within this identity-based community. The posters represented here are combating this invisibility and marginalization. They narrate themselves into existence by attaching their experiences to two well-known and recognizable social problem narratives. One is the “Pride/Community and Self-love” narrative, commonly associated with LGBTQ+ pride and LGBTQ+ communities. The other is the “Our Lives Matter/Deserving of Life” narrative, commonly associated with communities and social movements such as Black Lives Matter. Posters are artfully constructing their own community narratives by drawing from these culturally circulating and available narrative resources. When these two popular narratives are deployed in this way, they are counternarratives that are doing both resistance work and community/identity-building work. The ultimate effect is that the counternarrative they construct unites quite a diverse group of people through experiences of shared exclusion.

This chapter extends the scholarly conversation on both narratives and disability by suggesting ways in which counternarratives about individuals with complex intersectional identities can be constructed in virtual communities. In so doing, the chapter brings poorly represented perspectives into discourses on disability and narratives. The study also contributes to the literature on the importance of emotion, specifically by highlighting the deployment of love and anger to counteract experiences of shame and marginalization.