disability | Platypus

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

 Helena Fietz  May 19, 2020

Este conteúdo também está disponível em português.

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

 Baird Campbell  October 7, 2019

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

 Julie Armin, Ellen Estrada, Rebecca Bedwell  September 3, 2019

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

 Samantha Gottlieb  April 23, 2019

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

 Rebekah Cupitt  January 31, 2019

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

 Maria-Theres Schuler  September 18, 2018

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

 Abi Roper  August 21, 2018

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

 Stefan Johansson  June 7, 2018

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...)