Category: Disabling Technologies

Disability Dongle

I created the term “Disability Dongle” in 2019 to draw attention to the phenomenon of design and engineering students and practitioners who prototype “innovative” disability solutions. The definition satirizes an outcome in which designs or technologies “for” disabled people garner mainstream attention and accolades despite valid concerns disabled people have about them.  (read more...)

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...)

Co-signature Event Context: Toward a Participatory Electronic Health Record

The days of doctors scratching illegible notes in charts fated to hide in obscure files never read by another soul is long gone. Over the last two decades, paper charts have nearly disappeared as the evolution of the electronic health record (EHR) has come to dominate the healthcare environment not only in the US, but globally. The health record performs multiple types of labor. It serves to facilitate communication in medical care or research; it is a legal document and a record to justify billing. A new diagnosis and billing code must make its first entry into the medical record accompanied by the signature of a clinician authorized to determine this diagnosis. After this initial entry, non-professional personnel may then use this diagnosis for any of the above purposes (communication, billing, legal). This blog post explores how developments like the patient portal of the EHR create new opportunities for interpretation, (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 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...)

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...)

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...)

‘Inclusive WASH’ – Contested assumptions about bodies and personhood in a Ugandan refugee settlement

As I skimmed through the first pages of the shiny brochure of the ‘Inclusive WASH’ project, I suddenly recognized some of the people that the leaflet depicted in its photograph-filled spread: Odongo, a Sudanese man with paralyzed legs who pumped water from a borehole; Claire, a Congolese woman with one arm and one leg who poured water into a basin with the help of an iron scaffold that held a jerry can, a plastic container for storing and transporting water; and Vitali, an elderly Burundian man with legs withered by polio, who was shown receiving instructions on how to use the iron scaffold with the jerry can. The ‘Inclusive WASH’ project was implemented by an international aid organization with the aim to enhance access to water, and to improve sanitation and hygiene for people with disabilities through inclusive technology design. As the project officially came to an end only shortly (read more...)