Tag: disability

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...)

‘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...)

Personal Computing and Personhood in Design and Disability

Editor’s Note: This is the third post in the series on Disabling Technologies When I try to explain augmentative and alternative communication (AAC) devices to those unfamiliar, I usually start with physicist Stephen Hawking, who has amyotrophic lateral sclerosis (ALS). Hawking speaks using a high-tech computerized AAC device with synthetic speech output (Mialet, 2012). The electronic voice communicates to others the text that Hawking selects from a cursor moving across the computer screen mounted to his wheelchair using his cheek movement as input. These sorts of ‘tools for talking’ are also used by those with other disabilities and medical conditions that potentially impair oral speech such as autism, cerebral palsy, or a stroke. AAC devices are mobile by definition, as they ought to move with a person as they move through the world (Reno, 2012). They are becoming more “mobile” in another sense too. Individuals increasingly have the option of using AAC devices that take the material form of ordinary smartphones, tablet computers, and mobile apps that simulate software on specialized computers dedicated to AAC (Alper, 2015). (read more...)