Society for Disability Studies
Panel: (Re)Thinking the Master Narratives, April 18, 2:00-3:30 ET
Title: Breaking Down the Gates of the Fourth Estate: Intellectual Disability and Epistemic Justice in Journalism (with Amy Silverman)
Abstract: From compulsory institutionalization to exclusion from civic participation, intellectual disability has been leveraged across US history to deny people with intellectual disabilities (ID)/intellectually disabled people agency over their lives. The role that media play in that epistemic injustice is well-documented. Less well-documented, however, are strategies to shift these medicalized, paternalistic, and disempowering narratives. Drawing on a recent collaboration between several journalistic organizations, artists with intellectual disabilities, and a disability studies scholar, this presentation will chronicle our efforts toward epistemic justice and cognitive access in the development of a series of investigative reports on disability services for people with ID in Arizona. The first of these efforts was a community story-telling event featuring 12 artists with ID. The event’s explicit aims were to counteract stereotypic and discriminatory narratives about intellectual disability and encourage disabled participation in journalism as both reporter and source. The second activity was the production of a plain language translation of the full investigative series, including editors’ and production notes, in order to increase cognitive access to a wider variety of audiences. We argue plain language rejects paternalistic assumptions about content acceptability, intellectual gatekeeping, and the infantilization of people with ID. We conclude that these efforts center marginalized perspectives and enable greater civic and social participation through cognitive access. We argue that journalism around intellectual disability must transform from stories about to stories for and with in order to move toward an epistemically just fourth estate.
UMD Disability Summit
Panel: Being Seen, April 13, 9:30-12:30 ET
Title: Essential, Yet Disposable: Food, Flowers, and Filth in the Pandemic Era
Abstract: Employment opportunities for people with intellectual and developmental disabilities have long been critiqued for being limited to socially undesirable, low-wage positions. Colloquially known as the 3Fs – Food (restaurant, cafeteria, and other food service), Flowers (landscaping), and Filth (janitorial) – these traditionally devalued roles have suddenly been recast as indispensable in the pandemic era. With the abrupt reclassification to “essential work,” workers with intellectual disabilities are suddenly confronted with unprecedented recognition for their labor entangled with an increased demand for risk to their health and wellbeing. Drawing from a series of interviews with workers with intellectual disabilities – with positions ranging from grocery store clerk to food service in nursing facilities – I will consider the paradox of essential work conducted by socially undervalued bodyminds.
UToledo Welcome Lecture
Presentation Slides (PDF)
April 8, 6:00 pm, ET
Title: Cure and Its Malcontents: The Promises and Problems of Biomedical Technology
Abstract: Drawing from a wealth of interviews conducted with disabled people choosing and using medical devices, Dr. Becca Monteleone will discuss how every step of the medical technology lifecycle – from development to clinical discourses to personal use – is built on the assumption that disabled people should be self-responsible for managing and minimizing difference. Paired with the privileging of medical expertise above personal experience, disabled people are caught in a double bind of invalidation and personal responsibility. This talk will discuss how many navigate these tensions, particularly through building crip community and do-it-yourself medical tech.
Brain Data Bank Challenge Invited Panel 2020
Panel: Codesigning with the End-User: An Emerging Neurotechnological Research Paradigm (with Justin Yerbury (UOW) and Katina Michael (ASU); Moderated by Troy McDaniel (ASU))
Title: Leveraging Experience as Expertise in Design
Abstract: In this section, Dr. Monteleone will discuss the social, political, and ethical implications of research for rather than with, highlighting issues of mismatched priorities, usability, and affordability as barriers to access. She will offer examples of the experiential knowledge of people with disabilities -especially those experiencing multiple marginalizations – being leveraged in both formal and informal design practices, arguing for a broader and more inclusive definition for research and design expertise.
International Symposium on Technology and Society 2020
November 12, 2020
Invited Speech: Everyday Experts: Transforming Research and Design Practices for Disability
Abstract: People are experts of their own bodies and minds. By taking the experiences, desires, and needs of people with disabilities seriously, we create better technologies, health infrastructure, social systems, and political structures. However, despite on-going dialogues among engineers about person-centered research and practice, disabled people still remain conspicuously absent from technology design. More often than not represented by flat personas that reduce disabled people to a list of functional impairments, the resulting technologies often embed stereotypes about disability in their design. Science and engineering that has not been attentive to the lived reality of disability has proven to not only be ineffective, in terms of adoption, usability, and abandonment, but contributes to non-inclusive, discriminatory and disenfranchising social and material conditions. Drawing on examples from media, disability activism, and my own empirical work on individual experiences of biomedical technologies, this talk will present an argument that current practices in engineering and design are insufficient and oppressive when they fail to acknowledge the embodied and experiential expertise of disabled people. I will conclude by providing a series of recommendations for transforming engineering culture and practice. These include creating and supporting pathways for disabled researchers, reimagining design teams to better incorporate and appreciate different kinds of expertise and embracing a willingness to shift between individualized and collective solutions.
Society for Disability Studies 2020
April 4-5, 2020, Online Only
Panel: Broadening Bodyminds, Remaking Safe Spaces
Presentation Title: “People Make Things Happen” DIY Diabetes Technology as Disability Activism
Abstract: Do-it-yourself artificial pancreas systems (DIY APS) can be characterized as both a set of technologies and a social movement. Sometimes known as hybrid closed loops or automated insulin delivery systems, DIY APS uses continuous glucose monitoring, insulin pumps, smart phone or smart watch technology, and open source algorithms to control insulin delivery (Crabtree, McLay and Wilmot, 2019). Emerging from communities of people with diabetes and their families, DIY APS is a direct response to commercial device manufacturers’ inability or refusal to respond to the needs, design requests, and perspectives of users of these technologies. Currently, more than 1,500 people worldwide have adopted DIY APS, and many more have adopted other related DIY diabetes technologies.
Drawing from a series of qualitative interviews with DIY APS community members and analysis of their open source community documents, I argue that DIY APS is an emergent form of disability activism in its (1) resistance to hegemonic assumptions about medical authority, and (2) privileging of embodied and experiential expertise. In conversation with Goodley’s (2014) neoliberal-ableism and Hamraie and Fritsch’s (2019) crip technoscience, this paper explores both how people with diabetes come to be held accountable for their nonnormative bodyminds while simultaneously having their knowledge claims invalidated by medical and social authorities. DIY APS critically disrupts this paradigm by shifting authority and credibility away from commercial medical device manufacturers and clinicians and onto people with diabetes. Further, the development of a coherent DIY community creates opportunities for alternative cultural imaginings about health, disability, and well-being.
African Studies Association Annual Meeting 2019
November 21-23, 2019, Boston, MA, USA.
Panel: Disability Rights in Kenya: Activism and Engagement with Communities
Date: November 22, 8:30
Presentation Title: Prenatal Genetic Testing and Congenital Disability: A Call for East African Perspectives
Abstract: While there is a proliferation of interdisciplinary scholarship on Western experiences of prenatal genetic testing and the social construction of congenital disability, this paper argues crucial insight could be gleaned from considering genetic testing and disability from an East African perspective. Biomedical technologies like genetic testing contribute to producing a medicalized framework for disability, which understands it as a biological characteristic detectable, preventable, or curable through medical intervention. This framework confers authority and credibility to medical experts, delegitimizes the experiential and embodied expertise of individuals with disabilities, their family, and informal carers, and demands personal responsibility from prospective parents to act as “good” citizens by managing and eliminating the social and political burden of disability where possible (Rapp 1999; Paul 1998). In East Africa, where neither access to safe abortion nor adequate supports for a child with disabilities are guaranteed, prospective parents are faced with a double bind in the pursuit of good parenthood and good citizenship. Further, the colonial history of Western technoscience, in which East Africans were cast as “living laboratories” in pursuit of Western medicine, provides a relevant backdrop to examine the “funneling of social concerns into a genetic prism” exemplified in genetic testing (Graboyes 2015; Bumiller 2009).
National Women’s Studies Association 2019
November 14-17, San Fransisco, CA, USA.
Panel: Toward a New Body Politic: Alternative Onto-Epistemologies in Birth, Dis/Ability, and Death
Date: Thursday, November 14, 4:10-5:25, Hilton Union Square, Nob Hill 08
Presentation Title: The Obligations of Agency: Biomedical Technologies and Dis/Ability
Abstract: Many biomedical technologies ostensibly serve to provide individuals with new forms of knowledge and agency. From prenatal genetic testing to open-source DIY modifications to insulin pumps, biomedical technologies are increasingly positioned in a rhetoric of individual autonomy. However, the biomedicalization of healthcare and force of neoliberal individual responsibility means the use of these technologies is coupled with a shifting of accountability away from systems and toward individuals. This paper will explore the obligations of ‘empowering’ biomedical apparatuses as well as implications on onto-epistemological formations of dis/ability, exposing spaces for radical reimaginings of technoscientific-enabled futures.
Society for the Social Studies of Science 2019 Annual Meeting
September 4-7, 2019, New Orleans, USA.
Panel: Creative Misfits II – Creating Categories: Disability, Agency, and Identity
Date: Thursday, September 5, 9:45-11:15, Sheraton New Orleans Hotel
Presentation Title: Account/Ability: Disability and Agency in Deep Brain Stimulation
Abstract: Interrogation of the social and material contexts in which biomedical technologies are embedded exposes tensions between personal and social responsibilities, contrasting constructions of disability, and competing models of healthcare. The confluence of the biomedicalization of health care and increasing reliance on emergent biomedical technologies (Clarke et al, 2010), neoliberal individual responsibility (especially as it relates to non-normative, ‘non-productive’ bodies) (Goodley, 2014), and the forceful rhetoric of progress and innovation (Franklin, 1997) produces socio-techno-political environment(s) driven by a curative imaginary (Kafer, 2013) in which bodily and cognitive differences are perceived as deviance and demand intervention. Experiential and embodied expertise can disrupt this imaginary, but are often unacknowledged in healthcare settings and research. Blending critical disability theory and feminist science studies, this presentation will summarize the preliminary findings of an on-going case study into the lived experience of receiving and using deep brain stimulation technologies. Leveraging qualitative interviews, content analysis of user-directed guidance documents, and digital ethnography of user communities, this study explores how biomedical technologies mediate the meaning of dis/ability, how agency and accountability are distributed across the socio-technical apparatus, and how autonomy and personal responsibility are articulated. This paper contributes to a generative and growing literature at the intersection of dis/ability studies and science and technology studies.