Society for the Social Studies of Science 2022
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Panel: COVID and Cripistemology: Disability and Knowledge During a Pandemic II
“Yo soy el que se lo toma más en serio”: Conocimiento, poder y discapacidad intelectual durante la pandemia de COVID-19
“Eu sou aquele que leva mais a sério:” Conhecimento, poder e deficiência intelectual durante a Pandemia da COVID-19
“I’m the One that Takes It More Seriously:” Knowledge, Power, and Intellectual Disability During the COVID-19 Pandemic
Time and Date: December 8. 11:00a-1:00p CST
El COVID-19 ha afectado de forma desproporcionada a las personas con discapacidades intelectuales y del desarrollo (I/DD), y sin embargo han sido constantemente marginadas a lo largo de la respuesta a la pandemia, desde la falta de directrices accesibles desde el punto de vista cognitivo hasta la falta de prioridad en los protocolos de triaje y vacunación. A partir de un estudio cualitativo a pequeña escala basado en los estudios críticos sobre la discapacidad, esta presentación se centra en el conocimiento de las personas con DIC en los Estados Unidos durante el apogeo de la pandemia.
Los informes de las interacciones de los informantes con el personal asistencial que no sigue los protocolos de COVID ponen de relieve tres cuestiones interconectadas: la imposibilidad de distanciamiento social para muchas personas con discapacidad, las dificultades de gestión del riesgo para los profesionales de apoyo directo y las tensiones relativas al respeto y la dignidad en el trabajo asistencial. Además, la profesionalización de las relaciones en la vida de las personas con discapacidad intelectual, unida a los modelos de regulación paternalistas y capacitadores, produce diferencias de poder con profundas repercusiones. Por ejemplo, a medida que se cerraban los programas de día, las agencias proveedoras y los servicios para discapacitados, las relaciones sociales se desvanecían, revelándose como existentes sólo en el ámbito profesional. Las estructuras estrechamente reglamentadas y controladas que dominan las vidas de muchas personas con discapacidad intelectual se disolvieron por completo para algunos, dejándoles aislados y sin conexión. Por último, el empleo socialmente indeseable y mal pagado en el que participan muchas personas con DIC ha sido reclasificado bruscamente como “trabajo esencial”, lo que enfrenta a los trabajadores a un reconocimiento sin precedentes de su trabajo enredado con una mayor demanda de riesgo para su salud y bienestar. Estos relatos personales dan testimonio de la necesidad de centrarse en las personas con discapacidad intelectual a la hora de imaginar una respuesta a la crisis más justa.
A COVID-19 impactou desproporcionalmente as pessoas com deficiências intelectuais e de desenvolvimento (I/DD), e ainda assim elas têm sido constantemente marginalizadas durante toda a resposta à pandemia, desde a falta de diretrizes cognitivamente acessíveis até a despriorização nos protocolos de triagem e vacina. Com base em um estudo qualitativo em pequena escala informado por estudos críticos sobre deficiências, esta apresentação centraliza o conhecimento das pessoas com I/DD nos Estados Unidos durante o auge da pandemia.
Relatórios de interações dos informantes com o pessoal de atendimento que não seguem os protocolos da COVID trazem em foco três questões interligadas: a impossibilidade de distanciamento social para muitas pessoas deficientes, as dificuldades de gerenciamento de risco para profissionais de apoio direto e as tensões em relação ao respeito e dignidade no trabalho de atendimento. Além disso, a profissionalização das relações na vida de pessoas com I/DD combinadas com padrões de regulamentação capacitados e paternalistas produzem diferenciais de poder com impactos profundos. Por exemplo, à medida que os programas diurnos, as agências de prestação de serviços e os serviços para deficientes se fecham, as relações sociais se desvanecem, revelando-se como existentes apenas na capacidade profissional. As estruturas fortemente regulamentadas e controladas que dominam as vidas de muitos com I/DD dissolveram-se inteiramente para alguns, deixando-os isolados e desmotivados. Finalmente, o emprego socialmente indesejável e de baixos salários em que muitas pessoas com I/DD participam foi bruscamente reclassificado como “trabalho essencial”, confrontando os trabalhadores com um reconhecimento sem precedentes de seu trabalho enredado com uma demanda crescente por risco à sua saúde e bem estar. Estas narrativas pessoais testemunham a necessidade de centrar as pessoas com I/DD ao imaginar uma resposta mais justa à crise.
COVID-19 has disproportionately impacted people with intellectual and developmental disabilities (I/DD), and yet they have been consistently marginalized throughout the pandemic response, from the lack of cognitively accessible guidelines to deprioritization in triage and vaccine protocols. Drawing on a small-scale qualitative study informed by critical disability studies, this presentation centers the knowledge of people with I/DD in the United States during the height of the pandemic.
Reports of informants’ interactions with care staff that do not follow COVID protocols bring into focus three interconnected issues: the impossibility of social distancing for many disabled people, the difficulties of managing risk for direct support professionals, and tensions regarding respect and dignity in care work. Additionally, the professionalization of relationships in the lives of people with I/DD compounded with ableist and paternalistic patterns of regulation produce power differentials with profound impacts. For example, as day programs, provider agencies and disability services closed, social relationships faded away, revealing themselves as existing only in a professional capacity. The tightly regimented and controlled structures that dominate the lives of many with I/DD dissolved entirely for some, leaving them feeling isolated and unmoored. Finally, the socially undesirable and low-wage employment that many people with I/DD participate in has been abruptly reclassified as “essential work,” confronting workers with unprecedented recognition of their labor entangled with an increased demand for risk to their health and wellbeing. These personal narratives testify to the necessity of centering people with I/DD when imagining a more just crisis response.
National Women’s Studies Association 2022
Panel: Pop Culture and Feminist Media: Marginalization, Representation, and Refusal
Title: Which Public? Intellectual Gatekeeping and Cognitive Accessibility in Public Writing
Time and Date: November 12, 1:15-2:30 PM CST
Abstract: While public writing – from op-eds to investigative journalism to blog posts – aims to democratize access to information, persistent gatekeeping structures invisiblize and alienate already marginalized groups. In this presentation, drawing on feminist disability studies, empirical qualitative research, and practical applications of cognitive accessibility in news media, I argue that disabled people – particularly people with intellectual disabilities – are systematically excluded from public discourse, including discourse about disability, due to entrenched social expectations about credibility in knowledge production and intellectual community.
Society for the Social Studies of Science 2021
Panel: Crip Politics, Mad Studies, and Bioethics
Title: Exploring the Crip Politics of Biomedical Technologies
Time and Date: October 7, 2021, 1:20 PM ET
National Women’s Studies Association 2021
Panel: Transnational Circuits of Haunting, Death, and Debility
Title: Ghosts of Future Past: The Intractable Politics of Enhancement
Abstract: As biomedical technologies increasingly focus on being “better than well,” ethical and regulatory concerns revolve around transgressions across the boundary between “necessary” therapy and “immoral” enhancement. For the ideal self-governing subject, technological enhancement is unfair advantage. For pathologized bodyminds, technological intervention is deemed both a medical necessity and moral imperative. This presentation argues that non-White, non-Western disabled bodyminds haunt these transhumanist and techno-optimist discourses despite systemic exclusion of actual disabled people. I assert emergent biomedical technologies are not founded in novel discourses, but a rearticulation of the curative imperial logics that animate(d) exploitation and abuse of disabled people throughout modernity.
Society for Disability Studies 2021
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
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.