Tag: disability

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

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...)

Elements of disability inclusion in Soviet disability pedagogy

For someone interested in the genealogy of disability inclusion in Russia, Soviet disability pedagogy, known at the time under the name of defektologia, may seem to be a somewhat unexpected place to turn to. On the one hand, the Soviet system of korrektsionnoye [corrective] education for children with disabilities embodied isolationism and paternalism, the features which characterized Soviet disability governance more broadly (Shek 2005): schools for students with disabilities were built at a significant distance from the heart of urban life; they functioned predominantly as boarding schools, de facto exerting control over children’s mobility and public appearance; they often had little contact or interaction with mainstream schools and communities. On the other hand, Soviet disability pedagogy also produced moments when disability exclusion, otherwise naturalized across various domains of life, had been problematized and questioned. To them, I turn in this post. (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.[1] (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...)

Negotiating Ethical Technology Use: Trust and Care in End-of-Life Conversations

The headline on the local news station’s website was sensational: “Bereaved Family Upset Kaiser Used Robot to Tell Father He Would Die”. Evoking some sort of post-modern dystopia, the article explains that the family “was taken by surprise when a robot rolled into the room” to deliver the news that an elder family member’s illness had progressed past the physician’s ability to treat it. While the robot actually was a remote physician using teleconferencing software to communicate with the patient and his family, the monitor projecting an image of the physician’s head and shoulders sat atop a tall, narrow metal unit reminiscent of a body. The “robot doctor” story was picked up by national news outlets, like the New York Times, and medical ethicists weighed in on the ethics of communicating “sensitive” topics remotely. The news stories problematized the impersonal, almost routinized, care as it was perceived by the family. In one, a representative from the American Medical Association commented, “We should all remember the power of touch – simple human contact – can communicate caring better than words.” (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...)

Writing disability

When writing inequalities, the language we use and our writings betray the power dynamics and the unequal relations that stem from the world we as researchers come from. This post explores how these inequalities play out in the worlds we embed ourselves in as outsider researchers and are apparent in what we write through a reflection on my own research with dDeaf  television producers and actors in Sweden. (read more...)