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- All Subjects: disability
- Creators: Fonow, Mary Margaret
Description
Spotlighting the figure of the exceptional disabled girl as she circulates in the contemporary mediascape, this dissertation traces how this figure shapes the contours of a post-Americans with Disabilities Act structure of feeling. I contend that the figure of the exceptional disabled girl operates as a reparative future girl. As a reparative figure, she is deployed as a sign of the triumph of U.S. benevolence, as well as a stand-in for the continuing fantasy and potential of the promise of the American dream, or the good life. Affectively managing the fraying of the good life through a shoring up of ablenationalism, the figure of the exceptional disabled girl rehabilitates the nation from a place of ignorance to understanding, from a place of nervous anxiety to one of hopeful promise, and from a precarious present to a not-so-bleak-looking future.
Placing feminist cultural studies theories of affect in conversation with feminist disability studies and girlhood studies, this dissertation maps evocations of disabled girlhood. It traces how certain affective states as an intersubjective glue stick to specific disabled girls’ bodies and how these intersubjective attachments generate an emergent affective atmosphere that attempts to repair the fraying fantasy of the good life. Utilizing affect as methodology and object of analysis, this dissertation interrogates ambivalent visual artifacts: ranging from the “real” figure of the disabled girl through YouTubers, Charisse Living with Cerebral Palsy and Rikki Poynter, to a fictional disabled girl in Degrassi: Next Class; spanning from physically disabled beauty pageant contestants to autistic girls learning how to dance; and, finally, looking to a black disabled girl in her life and death, Jerika Bolen. I contend that through their roles as disability educators, shared objects of happiness and optimism, and pedagogues of death, exceptional disabled girls have been deployed as guides on a new roadmap to ideal, affective post-ADA citizenhood.
Placing feminist cultural studies theories of affect in conversation with feminist disability studies and girlhood studies, this dissertation maps evocations of disabled girlhood. It traces how certain affective states as an intersubjective glue stick to specific disabled girls’ bodies and how these intersubjective attachments generate an emergent affective atmosphere that attempts to repair the fraying fantasy of the good life. Utilizing affect as methodology and object of analysis, this dissertation interrogates ambivalent visual artifacts: ranging from the “real” figure of the disabled girl through YouTubers, Charisse Living with Cerebral Palsy and Rikki Poynter, to a fictional disabled girl in Degrassi: Next Class; spanning from physically disabled beauty pageant contestants to autistic girls learning how to dance; and, finally, looking to a black disabled girl in her life and death, Jerika Bolen. I contend that through their roles as disability educators, shared objects of happiness and optimism, and pedagogues of death, exceptional disabled girls have been deployed as guides on a new roadmap to ideal, affective post-ADA citizenhood.
ContributorsTodd, Anastasia (Author) / Switzer, Heather (Thesis advisor) / Fonow, Mary Margaret (Thesis advisor) / Himberg, Julia (Committee member) / Arizona State University (Publisher)
Created2016
Description
Over the last half century, global healthcare practices have increasingly relied on technological interventions for the detection, prevention, and treatment of disability and disease. As these technologies become routinized and normalized into medicine, the social and political dimensions require substantial consideration. Such consideration is particularly critical in the context of ableism, in which bodily and cognitive differences such as disabilities are perceived as deviance and demand intervention. Further, neoliberalism, with its overwhelming tendency to privatize and individualize, creates conditions under which social systems abdicate responsibility for social issues such as ableism, shifting accountability onto individuals to prevent or mitigate difference through individualized means.
It is in this context that this dissertation, informed by critical disability studies and feminist science and technology studies, examines the understanding and enactment of disability and responsibility in relation to biomedical technologies. I draw from qualitative empirical data from three distinct case studies, each focused on a different biomedical technology: prenatal genetic screening and diagnosis, deep brain stimulation, and do-it-yourself artificial pancreas systems. Analyzing semi-structured interviews and primary documents through an inductive framework that takes up elements of Grounded Theory and hermeneutic phenomenology, this research demonstrates a series of tensions. As disability becomes increasingly associated with discrete biological characteristics and medical professionals claim a growing authority over disabled bodyminds, users of these technologies are caught in a double bind of personal responsibility and epistemic invalidation. Technologies, however, do not occupy either exclusively oppressive or liberatory roles. Rather, they are used with full acknowledgement of their role in perpetuating medical authority and neoliberal paradigms as well as their individual benefit. Experiential and embodied knowledge, particular when in tension with clinical knowledge, is invalidated as a transgression of expert authority. To reject these invalidations, communities cohering around subaltern knowledges emerge in resistance to the mismatched priorities and expectations of medical authority, creating space for alternative disabled imaginaries.
It is in this context that this dissertation, informed by critical disability studies and feminist science and technology studies, examines the understanding and enactment of disability and responsibility in relation to biomedical technologies. I draw from qualitative empirical data from three distinct case studies, each focused on a different biomedical technology: prenatal genetic screening and diagnosis, deep brain stimulation, and do-it-yourself artificial pancreas systems. Analyzing semi-structured interviews and primary documents through an inductive framework that takes up elements of Grounded Theory and hermeneutic phenomenology, this research demonstrates a series of tensions. As disability becomes increasingly associated with discrete biological characteristics and medical professionals claim a growing authority over disabled bodyminds, users of these technologies are caught in a double bind of personal responsibility and epistemic invalidation. Technologies, however, do not occupy either exclusively oppressive or liberatory roles. Rather, they are used with full acknowledgement of their role in perpetuating medical authority and neoliberal paradigms as well as their individual benefit. Experiential and embodied knowledge, particular when in tension with clinical knowledge, is invalidated as a transgression of expert authority. To reject these invalidations, communities cohering around subaltern knowledges emerge in resistance to the mismatched priorities and expectations of medical authority, creating space for alternative disabled imaginaries.
ContributorsMonteleone, Rebecca (Author) / Fonow, Mary Margaret (Thesis advisor) / Ross, Heather (Committee member) / Frow, Emma (Committee member) / Michael, Katina (Committee member) / Arizona State University (Publisher)
Created2020
Description
Libraries provide a needed third place for students to engage with their peers and faculty, both academically and socially. Staff behavior, knowledge, and skills in providing an accessible and inclusive environment are key to helping students with disabilities feel that they belong in the libraries. This makes training in disability and accessibility awareness a necessary component of the overall program for the library. This study assessed a locally-developed, online training program for staff of all levels that was intended to improve staff knowledge and skills in disability etiquette, library services and spaces that support people with disabilities, and the policies that govern this work. The program used the four-part Deines-Jones (1999) model for its content and the core principles of andragogy for its instructional design. Assessment focused on changes in beliefs and knowledge using an adapted standardized scale, and evidence for learning from responses to training program questions, focus group discussions, and survey responses. Further development of the training program was informed by the principles of andragogy. Participants in the training program improved their scores in the knowledge domain but had no change in their beliefs domain. Learning was most evident in spaces where it engaged with previous knowledge and supportive customer service approaches. Participants identified and, in several cases, independently pursued new questions that were prompted by the training program. On the whole, participants found the training to be supportive and engaging, with minor changes to structure and focus recommended for the next iteration.
ContributorsVaughan, K.T. (Author) / Bernstein, Katherine (Thesis advisor) / Puckett, Kathleen (Committee member) / VanScoy, Amy (Committee member) / Arizona State University (Publisher)
Created2019