Disability Studies Approach Research Articles

"Motherhood forced me to cope with my disability": identity intersection among mothers with physical disabilities.

Although motherhood plays a meaningful role in the formation of a woman's identity, most studies have focused on the process of identity transformation in the transition to motherhood among non-disabled women; less is known about this process among women with physical disabilities who become mothers. The present study aimed to understand and describe the subjective experiences of Israeli women with lifelong physical disabilities in their motherhood journey from the perspective of the intersection of their motherhood and disability identities, and from the disability studies approach. Semi-structured interviews were conducted with 20 Israeli mothers with visible lifelong physical disabilities who live in the community and raise their children. Three themes emerged from the interviews: (1) the decision to become a mother: Coping with the disability identity for the first time; (2) The FIRST 3 years: Depending on others as limiting their motherhood identity; (3) after age three: Balancing the motherhood and disability identities. The transition to motherhood led to identity transformation among women with physical disabilities. Becoming a mother increased the tension between dependence and independence in the context of disability, which also influenced the intersection of their motherhood and disability identities and their wellbeing. Practitioners should provide emotional support to mothers with disabilities and help them embrace the positive aspects of each identity and strike a balance between them.

Coloring Outside the Lines: Teaching Graphic Medicine as Disability Studies

The article argues for the importance of teaching undergraduate graphic medicine courses informed by disability studies. Using her experiences teaching graphic medicine classes over the last eight years, the author argues for the importance of graphic medicine courses beyond medical school curricula. This creates an opportunity not just to introduce disability studies concepts to undergraduates, but also for disability studies and graphic medicine to meaningfully illuminate each other. The article argues that framing comics through disability aesthetics and disability activism (including precepts such as access intimacy and disability justice) reveals how powerfully and consistently graphic medicine centers each. In turn, graphic medicine provides powerful opportunities to reimagine disability representation and access as aesthetics and accommodation. The article shares experiences of teaching graphic medicine, reflects on related dilemmas, and offers fruitful strategies for anyone wishing to teach graphic medicine courses informed by a disability studies approach.

Exploring the social determinants of health from the perspectives of people with spinal cord injuries: A disability studies approach

The social determinants of health is an internationally recognized approach to analyzing the impact of non-medical factors on individual health. However, disability is mostly associated with inherent vulnerability without recognition of the social factors. The goal of this qualitative study is to examine the lived experiences of persons living with spinal cord injury (SCI) in coping and managing their health and functioning and to explore an interaction between their embodied experiences and structural issues that contribute to health and wellbeing of people with spinal cord injuries. A thematic analysis of 30 semi-structured interviews generated three themes that highlighted the tensions between the materiality of disability and the barriers associated with stigma, between the self-management strategies and the healthcare access, and finally between access to the formal supports and the invisible costs of living with a spinal cord injury. The findings emphasize the need to re-evaluate public health approaches, recognize the linkages between inequalities linked to disability, and incorporate an embodiment lens from a disability justice perspective.

Advocating for Disability Access

The Disabilities in LIS SIG session features presentations by American and Canadian researchers on a wide array of disability and accessibility-related topics. The first part of the session includes five 10-min research- and experience-based talks. It opens up with Kawooya, Robinson, Copeland, and Fox discussing a pilot study focused on the “Equitable Access for the Blind, Visually Impaired, and Print-Disabled (BVIPD) Students in Online Learning” (funded by USC). In “Ableism Rekindled: Experiences of Ph.D. Student During the COVID-19 Pandemic,” Dali and Charbonneau explore the experiences of disabled and neurodiverse Ph.D. students from LIS programs in Canada and the U.S. (funded by DU). To continue the theme of academia in “Discouraging Accessibility Through Poor Accessibility Training: An Antidote,” Smith addresses ways in which such training can have a negative effect on faculty and staff’s willingness to promote accessibility. Looking into professional settings, Rathbun-Grubb examines the “Post-COVID Work Experiences of Librarians with Chronic Health Conditions” based on the survey data collected in 2022. Bringing public libraries into the mix, Cahill, Adkins, Sartin Long, and Long examine why it is so challenging to engage public libraries in research-to-practice projects that improve access to library for families with young children with disabilities (funded by IMLS).
 Engaging a new format of blitz reports, the second part of the session highlights the news and updates on seven ongoing or recently completed projects. In their elegiac “May Be a Picture of a Dog and a Book,” Hill and Oswald share results of the study that examined the inaccessibility of social media feeds in Ontario public libraries. Guided by a critical disability studies approach, Lundy reports on preliminary findings from the dissertation-in-progress that investigates how and why individuals with non-apparent chronic illnesses share their health stories on TikTok. In the “The Prevalence of Public Library Makerspaces and Maker Programs for Youth with Disabilities,” Jung and Abbas share the initial findings from the project that investigates strategies for including youth with disabilities in public library markerspaces (funded by IMLS). Continuing this theme, Koh and Seo engage the audience in their participatory design project “Promoting Computational Thinking Skills for Blind and Visually Impaired Teens Through Accessible Library Makerspaces” (funded by IMLS). Based on the recently published co-authored study, Tobin explores “Representations of Children with Disabilities in a Public Library Board Book Collection.” In “Broadening Academic Library Employment: Neurodiversity in Academic Library Hiring,” Thompson and Dali report select findings from the pilot project focused on exploring barriers and supports in academic library hiring practices (funded by IMLS). To wrap up this stellar line-up of presentations, Phillips and Fife turn their attention to accommodation requests from academic librarians and library staff in the context of the COVID-19 pandemic.

Bringing disability studies and youth studies together to enhance understandings of youth transitions

ABSTRACT Critical youth studies understands contemporary youth transitions as an interplay between long term changes in labour markets and state approaches to welfare and the regulatory presence of societal norms about the ‘right kind’ of transitions and the ‘right kind’ of young adult citizens. This work is intersectional, with emphasis given to class, gender and race and ethnicity. However, in comparison less focus is given to disability, even though it shapes youth transition possibilities. This paper highlights the problems created by paying insufficient attention to disability, alongside making the case that there are conceptual tools useful to critical youth studies within disability studies. (1) Disability studies approaches to inequality help make the case that material inequalities are still an important factor in young people’s lives. (2) A focus on disability supports arguments that as forms of state support dwindle, family is increasingly significant – and problematic – as a resource in youth transitions. (3) Critical disability studies can help explore the significance of normative embodied markers of transitions for young people making their way towards adulthood. (4) Collaboration can encourage deeper recognition of the relational quality of transitional processes and move away from a linear understanding of time.

The sounds of memory: Troubling the professionalization of knowledge through Black women’s memoir and interpretive disability studies

In this article, the authors encourage the consideration of the use of Black women’s memoir to inform pre-service early childhood education by exploring Mary Herring Wright’s memoir of growing up Black and deaf in the southern USA in Sounds Like Home and bell hooks’ memoir of childhood in Bone Black: Memories of Girlhood. In their engagement with Wright and hooks, stories of childhood, longing and memory appear as valid forms of knowing that attend to issues of power, hegemony and social inequity. The authors further demonstrate that the standards of practice promoted within the Ontario College of Early Childhood Educators, particularly ‘Standard II: Curriculum and Pedagogy’, understand knowledge as valid primarily if based on empirical and developmental ways of knowing. Black women’s memoirs and counternarratives, engaged with from an interpretive disability studies perspective, trouble this by suggesting that memories and stories of childhood also serve as valid and important forms of knowledge in pre-service early childhood education training and beyond . How might one encourage and support a disability studies approach to inclusion in pre-service early childhood education settings? How might such an approach help blur the child–adult binary that often appears in pre-service early childhood education, and in almost all the relationships that children have with adults? Melding the creative and the critical, the authors argue that Black women’s memoir can deepen our understanding of belonging and love, and therefore is a necessary intervention in educational institutions embedded within a normative order that creates binaries between children and adults.

Examining the understandings of young adult South African men who stutter: The question of disability.

A disability studies approach seeks to understand and address political and social issues that affect disabled individuals. Disability studies scholars employ various models of disability to address and oppose the oppression and discrimination of disabled individuals. A disability studies approach, however, has largely been absent in studies that have investigated the lived experiences of people who stutter. To examine the understandings young adult South African men who stutter hold of whether, and in what way, stuttering may be considered to be a disability. A total of 15 men who stutter, aged 20-39 years, participated in the study. Semi-structured interviews and two focus groups discussions were conducted to collect data for the study. The data were analysed according to a phenomenological approach and the affective turn in social research. The results indicated that some men in this study understood stuttering as a speech disorder that can be controlled, while other men constructed stuttering as a disability, subjectively positioning themselves either as disabled or non-disabled men. This article emphasizes the importance of adopting a disability studies approach when examining the lived experiences of people who stutter and enhancing intervention strategies to adequately address the disabled needs of such individuals. What is already known on the subject? The past few decades have seen researchers investigating the personal and social experiences of people who stutter. However, empirical studies exploring the disabling experiences of people who stutter have been absent from the existing body of knowledge. What this paper adds to existing knowledge? This research aimed to provide comprehensive insight into the disabling experiences of people who stutter. The results gave an insight into the oppression and disablism experienced by people who stutter. More specifically, the findings demonstrated how individuals who stutter are disabled by oppressive communication practices that dominate spaces of education and employment. What are the potential or actual clinical implications of this work? Several men in this study attended speech therapy to gain control over their stuttering. For a number of participants, speech therapy proved a valuable experience, while others saw speech therapy as being out of touch with their lived reality of stuttering. Speech and language therapists are encouraged to employ a disability studies approach in order to enhance intervention strategies to adequately address the disabling needs of people who stutter.

For Dana and Her Ancestors

In this collection of poems, I narratively engage each chapter in Octavia E. Butler’s Kindred to examine disability and Black life anew. My engagement with the tale of longing, time-travel, and slavery that Butler weaves together in the novel is moved by an interpretive, or a phenomenological, disability studies approach, where “the experience of disability, our own or that of others, becomes the scene where we can frame how we experience embodied existence and, thus, disability becomes a place where culture can be examined anew, again and again” (Titchkosky & Michalko, 2012/2017, p. 77). Interpretive disability studies surfaces necessary questions around how we make sense of boundaries that distance ‘normal’ from ‘non-normal.’ Haitian author, Edwidge Danticat’s (2018) desire to make sense of separation is what brought her, in part, “…to the internal geography of words and how they can bridge sentences” (para. 10). Following in Danticat’s footsteps, while remaining indebted to the wisdom of Black women storytellers' writ large, I hope to understand the separations among the characters of Kindred, namely among Kevin, Rufus, Alice, Alice’s mother, Hagar, Dana and her ancestors, and Tom Weylin, and, in so doing, emerge, through poetry, from a geography of words charted by Butler and again encountered. The below poetic emergence reveals all boundaries as bridged, showing how disability can become a place where culture can be examined anew. For Dana and her ancestors, perhaps we might wonder about what it means to be in kindred with notions of normal and non-normal, and to live in kindred with one another.

Activating disability care: the formation of collective disability care networks in China’s COVID-19 outbreak

This study examines the evolution and development of two collective care networks formed by and for people with disabilities and their family members during the COVID-19 outbreak in China. Inspired by the feminist disability studies approach to the ethics of care, I traced the interdependent moment in which people with disabilities, their family members, and non-disabled allies were connected in response to the tragic death of a 16-year-old teenager with severe cerebral palsy for the lack of care. This tragedy painfully exemplified the vulnerability of families of disabled people, as well as a care system that disproportionally allocated the care responsibility on the family; it also turned into emotional power that nurtured the emergence of two care networks that provide collective support to families of disabled people, organize the community, as well as generate public, political appeals of policies and legislation surrounding disability care. Points of interest This article pays attention to two collective care networks formed by and for people with disabilities and their family members following the tragic death of a young man with severe disabilities for the lack of care in China’s COVID-19 outbreak. The collective care networks provided collective, social support to families of disabled people, organized the community, as well as generated public, political appeals of policies and legislation surrounding disability care. This article calls for the value of interdependence and the social, collective responsibility of disability care. This article calls for an emancipatory research agenda in Disability Studies to include the study of care through a cross-cultural perspective, and vice versa.

Rejecting Early Eugenics: Illness and Futurity in Sofía Casanova’s El doctor Wolski (1894)

Despite constituting what is arguably the first representation of eugenics in Spanish literature, Sofía Casanova’s El doctor Wolski (1894) has received little critical attention. Through contextual analysis and a disability studies approach, this article examines El doctor Wolski’s interrogation of medical genealogies and restrictions of reproductive rights, drawing attention to Casanova’s awareness of the potential for eugenic initiatives to target women and the lower classes. The article concludes that El doctor Wolski not only anticipates the full-fledged eugenic debates that would develop in the following decades, but also refutes specific eugenic strategies and offers a vision of social progress that values ethics of care and includes a future for subjects with incurable illnesses.

Disability Studies and Occupational Therapy: Renewing the Call for Change.

Disability studies (DS) is an interdisciplinary field grounded in a minority studies philosophy that approaches disability as a socially constructed phenomenon. The first special issue of the American Journal of Occupational Therapy on DS was published in 2005. The present issue serves as a follow-up to highlight opportunities for and examples of DS integration into occupational therapy education, research, and practice. Studies in this special issue reflect a DS approach to research that prioritizes lived experiences, critical approaches, and participatory methodologies. Reported interventions focus on changing societal barriers rather than remediating individual impairments and acknowledge instrumental activities of daily living often neglected by traditional research. Studies on educational practices in occupational therapy have found persistent issues around negative attitudes toward disability and many opportunities to better infuse disabilities studies into curricula. Revisiting DS as it applies to occupational therapy has shown that many of the issues and considerations raised in 2005 remain in the field today. Recommendations across articles in this special issue highlight that advocacy and working for broader social change are essential for occupational therapy practitioners, given ongoing occupational injustices for people with disabilities. Infusing DS ideas into occupational therapy can promote greater alignment with priorities of disability communities and spur professional change to dismantle oppressive structures and ideologies.

'Satan is holding your tongue back': Stuttering as moral failure.

BackgroundThe last decade has seen researchers and speech–language pathologists employ and advocate for a disability studies approach in the study of the lived experiences of people who stutter and in the design of interventions and treatment approaches for such individuals. Joshua St. Pierre, one of the few theorists to explore stuttering as a disability, mentions as a key issue the liminal nature of people who stutter when describing their disabling experiences.ObjectivesThis article aimed to build on the work of St. Pierre, exploring the liminal nature of people who stutter.MethodDrawing on my personal experiences of stuttering as a coloured South African man, I illuminated the liminal nature of stuttering.ResultsThis analytic autoethnography demonstrates how the interpretation of stuttering as the outcome of moral failure leads to the discrimination and oppression of people who stutter by able-bodied individuals as well as individuals who stutter.ConclusionAs long as stuttering is interpreted as the outcome of moral failure, the stigma and oppression, as well as the disablism experience by people who stutter, will continue to be concealed and left unaddressed.

Polysemic Interpretations: Examining How Women with Visual Impairments Incorporate, Resist, and Subvert Advertising Content

This article takes a feminist disability studies approach to the analysis of the responses of women with visual impairments to representations of blindness, disability, and gender in advertising. Empirical data gathered via semi-structured interviews with women who are visually impaired (N = 5) enhances existing understandings of oppressed audiences’ polysemic interpretations of advertisements. The research findings reveal participants’ subversion of stereotypical approaches to visual impairments, ocularcentrism, and gendered constructions of blindness, which are found in advertisements (N = 3) produced post-2000 in the United Kingdom and United States. Participants highlighted subtle stereotyping in advertisements through exploring the intersecting nature of disability and gender identities. Advertisements were used by participants as prompts for reasserting their affirmative senses of self and as a means of critiquing sociocultural attitudes toward women with visual impairments. Recommendations for future research and practice in relation to advertising polysemy and the representation of disabled women in advertising are provided.

Narrating Blindness and Seeing Ocularcentrism in Þorsteins saga hvíta

This article explores Þorsteins saga hvíta using a disability studies approach. It considers how the saga’s depiction of the eponymous Þorsteinn might reflect how vision loss or blindness was perceived and may have affected the everyday life of medieval Icelanders. Greater focus, however, is placed upon how the saga makes use of Þorsteinn’s vision loss and subsequent blindness to confront the hegemony of vision in connection with both knowledge and narrative.

The Loss: Conceptualising Biographical Experiences of Disability, Social Isolation and Emotional Loneliness in North-East England

Research into experiences of social isolation and loneliness has predominantly focused on older adults, i.e. post-retirement, as a significant at-risk group. Similarly, research exploring disability and loneliness has been associated with old age and conceptualised as an inevitable outcome of ‘failing’ health. This study seeks to conceptualise experiences of disability from a wider age group to understand if occurrences of social isolation and loneliness are commonplace. Fifteen qualitative biographical narrative interviews were completed by a Community Research Team, including seven males and eight females aged 32–89. A Disability Studies approach was applied to identify significant pathways from isolation into emotional loneliness, experienced by participants; fourteen of whom were affected by disability issues. Key risk factors were identified relating to disabled participants’ experiences of ‘loss’. Loss was associated with ‘loss of ability’, ‘loss due to bereavement’, ‘loss of social connectivity’ and ‘loss of self-confidence’. Participants connected life events concerning loss with spending time alone, leading to feelings of emotional loneliness. The findings illustrate key risk factors in being alone during evenings and weekends, periods where disabled participants were most likely to experience subjective feelings of emotional loneliness. (NOTE: The views expressed in this article are those of the authors not necessarily those of their employing agencies.)

The space between words: on the description of Parkinson’s disease in Jonathan Franzen’s 'The Corrections'

Disability or health-related literature has potential to shape public understanding of disability and can also play an important role in medical curricula. However, there appears to be a gap between...

Cognitive Disability Aesthetics: Visual Culture, Disability, Representations, and the (In)Visibility of Cognitive Difference by Benjamin Fraser (review)

Reviewed by: Cognitive Disability Aesthetics: Visual Culture, Disability, Representations, and the (In)Visibility of Cognitive Difference by Benjamin Fraser Elizabeth J. Jones Benjamin Fraser. Cognitive Disability Aesthetics: Visual Culture, Disability, Representations, and the (In)Visibility of Cognitive Difference. Buffalo: U of Toronto P, 2018. 257p. While disability studies as a field has grown substantially in recent decades, from Rosemarie Garland-Thomson’s Extraordinary Bodies (1997) to Mitchell and Snyder’s seminal Narrative Prosthesis (2000), bodily difference has taken center stage while cognitive disabilities have been relegated to the margins. Benjamin Fraser’s most recent work moves beyond this focus on the physical to what he deems a second-wave of disability studies that examines frequently ignored cognitive disabilities. His emphasis on the cognitive coupled with an interest in the seldom investigated Spanish context makes Cognitive Disability Aesthetics doubly innovative. Fraser has previously written prolifically on disability in Spain and now builds and centers his critical lens exclusively on the visual culture of cognitive disabilities. Doing so highlights the way that they are made visible. In the process of analyzing Spanish texts, exhibitions, or films, he provides English translations, thus supporting his goal to “bring Anglophone readers [End Page 322] exposure to the Spanish context” while pushing Hispanic cultural and literary studies to include cognitive disability (19). To achieve these goals, Cognitive Disability Aesthetics is divided into two parts, each with three chapters, and an introduction and conclusion. “Part One: Theorizing Visual Disability Representations” establishes a theoretical framework that is then expanded and particularized in the textual analysis in “Part Two: Cognition, Collaboration and Community.” Part One’s most distinctive feature is Fraser’s ability to inhabit paradoxes and gaps in a way that demonstrates the rich zones in the visual culture of cognitive disability and invites further examination. For example, Chapter 1 studies canonical works in a way that both highlights their utility and underscores their marginalization of cognitive difference. Similarly, Chapter 2 does not reject negative or flat visual representations of cognitive disability. Instead, along with deficits and ableism, their examination reveals spaces of transgression. Chapter 3 continues this work of acknowledging deficits while highlighting utility. Fraser explores how visual forms can provide unique insight into the materiality of the cognitive disability experience, even though many might question the ability of cognitively able creators and producers to make such representations. Part Two applies this framework to particular representations using a diverse range of examples: the Trazos Singulares (2011) public exhibition, which artists with developmental disabilities helped create; movies; documentaries; and graphic novels such as María cumple 20 años (2015), a collaboration between a daughter with autism and her cognitively able father. These examples show how visual forms can encourage collaboration between the cognitively able and those with disabilities. Nonetheless, Fraser acknowledges why some would view such co-created visual representations as superficial or limited, while still asserting that they “may open a pathway toward understanding the experience of cognitive disability in an ableist world” (135). Chapter 5 treats Paco Roca’s 2008 graphic novel Arrugas, which features characters with Alzheimer’s. After establishing a basis for connecting aging and dementia to disability studies, Fraser evaluates its visual and textual components and establishes that the graphic novel highlights issues of interdependency and temporality in a way that both “problematizes and humanizes the Alzheimer’s experience” (147). By observing the visual representation and individual experience of schizophrenia in Abel García Roure’s documentary Una cierta verdad (2008), he stresses the need for a social model of cognitive disability that includes psychiatric illness. Fraser’s combination of theory and textual examination underscores the mutually-beneficial relationship between Anglo- and Hispanophone disability studies that has yet to be fully explored. He demonstrates how [End Page 323] traditional disability studies approaches can be utilized to illuminate Spanish texts. Similarly, he signals the gaps and gray spaces in canonical disability studies theory and how investigations beyond the Anglophone world can deepen our understanding of disability. Additionally, Fraser’s unique, exclusive focus on cognitive disability magnifies the lack of similar studies in Anglo- or Hispanophone realms. Fraser’s book does not claim to be a disability studies primer. It targets an audience with...

Masquerading Early Modern Disability

Building on Katherine Schaap Williams’s (2009) reading of the play, this article uses a disability studies approach to consider Richard Loncraine’s 1995 film adaptation of Shakespeare’s Richard III. Loncraine’s adaptation allows modern-day viewers to experience a highly visual (and often intimate) exchange with Sir Ian McKellen as Richard Gloucester. Specifically, Gloucester’s verbal claims of a disability that renders him unsuitable as a leader and a lack of sexual prowess are juxtaposed alongside sexually violent visual actions and imagery—particularly in the form of phallic symbols. The juxtaposition of verbal passivity in opposition to visual aggression demonstrates how Richard showcases or hides his disability as he pursues the throne: the first half of the film features Richard masquerading ability, while the second half features him masquerading disability.

Participation as a means or an end within HTA and ICT: lessons from a disability studies approach

Participation as a means or an end within HTA and ICT: lessons from a disability studies approach

The Trouble with Disability in Shakespeare Studies

This article reviews some instances of disability in Shakespeare's works and some instances of Disability Studies in Shakespeare studies. Contrary to the claims of the Disabled Shakespeares project, there is no historical basis for the modern language of "disability" in Shakespeare's texts, as illustrated with a philology of the term; this does not, however, invalidate the viable uses of disability theory in Shakespeare studies. Developing a typology of these uses (historical, methodological, critical, theoretical), this article discusses the opportunities and liabilities of each approach but concludes that a better vocabulary can be found in Erving Goffman's theory of stigma (which inspired Disability Studies but, in many ways, is more conceptually and ethically buoyant). The main goal in this article is not to argue against a Disability Studies approach to Shakespeare but, instead, to use those readings as evidence of the imperfect even if well-intentioned ways we respond to the encounter with stigma in Shakespeare's works – a phenomenon of literary criticism that is remarkably resonant with the similarly imperfect even if well-intentioned ways we respond to the encounter with stigma in our everyday lives.