Category: Disabling Technologies

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...)

How to Book an Appointment Online when you have Aphasia

I’m meeting a fellow speech therapist researcher at a weekly drop-in session for people with aphasia when Markus* comes in, brandishing an envelope.  “I went!” he exclaims. Markus has just arrived fresh from a visit to the head office of one of his home utility providers. He has taken matters into his own hands after coming up against a technological obstacle.  Markus regaled to us his story using an effective combination of short spoken utterances, gesture, a written note and an established communication dynamic with my fellow speech therapist.  I want to share with you his story to discuss the issue of technology and aphasia. Markus had received a letter telling him that his boiler (the British term for a home water-heating system) needed to be serviced.  The letter instructed him to call or go online to make an appointment.  Due to his aphasia, however, Markus had found himself unable (read more...)

The Power of Small Things: Trustmarkers and Designing for Mental Health

At my office we put tennis balls on the legs of the chairs to reduce the noise of the scraping chairs against the parquet floors. They are hard to miss, but they fulfill their purpose. For this reason, I never reflected on what kind of feelings these bright fluorescent yellow balls might evoke when visitors see them attached to the bottom of the meeting room’s chair legs. (read more...)

Our Digital Selves: What we learn about ability from avatars

Editor’s Note: This post was written by Donna Davis, PhD – University of Oregon and is the sixth post in the series on Disabling Technologies Imagine sitting on the beach on a beautiful day. The sun is rising and the birds singing. Wisps of clouds gently float by as the surf rhythmically rolls in and out at your feet and the children frolic in the sand. You can almost feel the heat of the sun, only you can’t — because you’re sitting in a virtual world. Such is the experience of the childless agoraphobe who may never see the ocean again. Virtual worlds have always been places of both escape and entertainment. For people with disabilities, this notion of escape comes with far greater opportunity but also risk. The risk is that this escape is tied to a simplistic understanding of both virtual reality and disability – especially where people who have never experienced either assume an individual with disabilities may want to abandon their physical experience for the comfort of a virtual one. (read more...)

“Becoming Blind” in Virtual Reality

Editor’s Note: This is the fifth post in the series on Disabling Technologies Can technology convey experiences that are not our own, ones we can at the most imagine experiencing from a first person perspective? Furthermore, can technology help us understand the multisensory and deeply emotional qualities of such experiences? Central to this post is the consideration of how the Virtual Reality (VR) documentary Notes on Blindness may enable us to experience a ‘world without images’. I explore these questions through touching upon the problem of individual experience contra the universal. Indeed, if there is no such thing as a “universal” experience of blindness (Cupitt 2017; Hull 1990; Sacks 2005), and if VR experiences are also highly individualized (Aardema et al 2010), is there still value to be found in the personal experience? In an auto-ethnographic description of my experience with Notes on Blindness, I will focus mostly on my bodily sensations, changing emotions and how I went about “looking for my legs” in a VR. (read more...)

As If I Were Blind…

Läs inlägget på svenska här. What is an experience and how can it be conveyed and communicated to others? “A focus on “The Experience” signals a technology has been designed with a consideration for the user’s experiences. It is supposed to indicate  a technology’s role and contribution to everyday life, and the likelihood of its success once implemented. Given its popularity in design contexts, the term “experience” seems unusually rare in anthropology, with a few notable exceptions (e.g., Bruner, 1986; Turner, 1986; Hastrup, 1995, for example). This is so despite the fact that we, as anthropologists, can definitely be said to “experience” a way of living other than the one we are used to when we carry out fieldwork. This experience begins with our first encounter with another culture and its people, and continues into the writing stage, with our concerted attempts to communicate the complicated cultural aspects of the (read more...)