Tag: Disability Studies

Complicating Disability: On the Invisibilization of Chronic Illness throughout History

At the time of writing, the world is entering the third year of the Covid-19 pandemic. As the highly contagious Omicron variant of the virus is causing cases to surge in numerous countries, media and public health narratives have been dominated by speculation that the virus appears to cause less severe illness and fewer deaths, and that this is the natural trajectory of a pandemic nearing its end: a virus continues to mutate and gradually evolves to be more transmissible and less virulent, eventually becoming endemic and mundane. Much of the general public has taken up the rhetoric of public health agencies, which assert that we should be encouraged by the fact that severe illness and death from the virus almost exclusively occur in the unvaccinated and those with pre-existing conditions (Dickinson 2022; Mateus and Murray 2022; Ominous 2022). This is necropolitics: society has designated it acceptable for certain groups of people to die (Mbembe 2019). (read more...)

Moving Towards Disability

December 3rd is the UN’s International Day for People with Disabilities. The theme of 2021 was “Building Back Better: toward a disability-inclusive, accessible and sustainable post COVID-19 World”. Of course, 2021 has hardly been a post-COVID world; and the social and health effects of the pandemic continue to place people with disabilities at risk. According to the UN, days of recognition work to celebrate, educate, and ‘mobilize political will’ (https://www.un.org/en/observances). These days of recognition are often for complex problems and, as CASTAC’s 2020 post says, the next question is What Happens The Day After? (Borodina 2020). This year I would like to present a brief case for how and why we, in STS and anthropology, can take up Disability as a lived reality and analytic for our work. I discuss disability as a category and its implications and then present two possible frameworks for its incorporation. (read more...)

International Day of Persons with Disabilities: What Happens the Day After?

Twenty-eight years ago, in 1992, the United Nations General Assembly resolution 47/3 proclaimed December 3 as International Day of Persons with Disabilities. Immediately following the International Day for the Abolition of Slavery and followed by the International Day of Banks (yes), the International Day of Persons with Disabilities was and still is charged with the impulse “to promote the rights and well-being of persons with disabilities in all spheres of society and development, and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life.” Each year, a specific theme is chosen to direct public attention toward a specific issue. In 2018, it was “Empowering persons with disabilities and ensuring inclusiveness and equality.” In 2019, “Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda.” In 2020, “Not all disabilities are visible.” A product of a policy-oriented reformist environment, International Day of Persons with Disabilities helps to direct attention, mobilize action, and bring about material changes in the lives of people with disabilities. But what happens to these impulses on December 4th (besides the International Day of Banks)? (read more...)

“Doing Being a Latina,” or Performing Identities Through a Computer Voice

This is a comment on Meryl Alper’s book “Giving Voice” which explores the topic of enacting an identity (e.g. a Latina girl) through a speech synthesizer or pre-recorded utterances of one’s “voice donor.” The ability to communicate is often taken-for-granted and imperceptible, despite being vital to everyday life. It defines our social performances as family members, professionals, and neighbors. Moreover, institutions as well as identities need to be “talked into being” (Heritage and Clayman, 2010). Although in many mundane situations we get by with meaningful bodily gestures (Goodwin, 1986) such as nodding, shaking the head, waving, and pointing, other interactions require us to use complex language processing skills and muscular control over the vocal organs and hands. (read more...)

On The Social Life of TBI

A Traumatic Brain Injury (TBI) is a common injury that occurs when a physical blow or force to the head damages the brain inside the skull—full stop. As such, TBI is a natural part of life in a world in which it is possible (and easy) to hit one’s head. It is often fatal, one of the leading “causes of death and disability” in the US (CDC 2015). This straightforward conception is codified in biomedical publication and practice, enshrined in the federal TBI Act of 1996 and national disability policy, and has even made brief appearances in popular film and public debate about the health risks of contact sports. This bio-political consensus is thus clear and plain: “TBI” indicates a singular event and its direct and natural bodily consequences. (read more...)

The Paradox of Autonomy and Care for Mothers of Adults with Disabilities in Brazil

Since the early 2000s, Brazil has experienced a significant change concerning the rights of people with disabilities in the country. Based on the struggles of the Brazilian Disability Rights Movements, in 2009 the country promulgated the UN Convention on the Rights of Persons with Disabilities (2006) and in 2015 enacted the Brazilian Inclusion Law, also known as the Statute of People with Disabilities. The promotion of autonomy and the social participation of people with disabilities is at the core of these legislations. While these measures are not always accompanied by policies that can actually guarantee their implementation, they still impact people with disabilities in the way they foster such discourses around autonomy and independence. (read more...)

Platypus Celebrates National Disability Employment Awareness Month

In support of National Disability Employment Awareness Month, please enjoy some of our favorite posts engaging with understandings of disability! (read more...)

The FDA, Patient Empowerment, and the Type 1 Diabetes Communities in the Era of Digital Health

The day-long September 2018 workshop, “Medical Devices-Patient Engagement in Real World Evidence: Lessons Learned and Best Practices,” sponsored by the Food and Drug Administration (FDA) and University of Maryland (UM), met on the Baltimore campus, the city where I spent my graduate school years. In contrast to Baltimore’s palpable desperation, UMB’s health campus gleamed with newness, its brick walkways and tastefully planted vegetation viewable through floor-to-ceiling windows. In the well-appointed auditorium, Dr. Jeffrey Shuren, director of the Center for Devices and Radiological Health (CDRH, pronounced ‘cedar’), closed his introduction to the conference with the pronouncement that as the FDA moved toward real world evidence (RWE), “patient engagement” and the data patients may collect are invaluable for RWE. (read more...)