Tag: Disability Studies

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...)

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Does ‘Going Sighted’ Make Life Better? Undoing the Desire to Cure Blindness in Russia

Svetlana Borodina March 27, 2018

In 2017, two Russian deafblind patients—Grigoriy Ulianov and Antonina Zakharchenko—received retinal implants, or so-called “bionic eyes.” Both patients were selected from a pool of applicants, having met the criteria of acquired blindness through retinitis pigmentosa and a capacity to perceive light but not contours of objects. Immediately after, the country’s major media outlets burst with numerous media reports. The titles ranged from the celebratory, such as Breakthrough in Russian Medicine: First Patient Got Bionic Eyes; Magician? Just a Doctor; The Miracle of the Bionic Eye; to the more restrained, with Second Russian Patient Will Receive a Cybereye This Fall; I See But Not Like You Do: On How The First Russian Patient with the Bionic Eye Lives. The overall tone of the reports was marked by magic, wonder, gratitude for the doctors, and profound satisfaction with the procedures. They were mostly celebratory and hopeful about the new possibility of converting up to (approximately) 50,000 blind Russian individuals to sight. In the context of a new federal policy orientation aimed at making Russia inclusive of different abilities, these reports emerged as a token of a hopeful future, in which problems with the well-being of blind individuals would be solved not through systemic measures, but instead, through eradicating blindness. I follow Alison Kafer (2013) in understanding this fantasy of desired technological enhancement as part of the normative curative public imagination. (read more...)

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As If I Were Blind…

Rebekah Cupitt August 1, 2017
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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 places and peoples we study (read more...)

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Personal Computing and Personhood in Design and Disability

Meryl Alper June 13, 2017

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...)

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Decolonizing Design Anthropology with Tinn

Bryce Peake April 21, 2015

In fall 2014, I began building Tinn, a health data tracking application for people living with tinnitus. I approached building Tinn as an opportunity to explore what a socially conscious, feminist, and anti-colonial process for developing mobile applications might look like. The idea of pairing design, building, and anthropology is hardly all that innovative; “design anthropology,” a subfield of cultural anthropology focused on empirical studies of use cultures, has been around since the 1980’s (at least). What sets Tinn apart, however, is my commitment to working with communities of color in Portland, OR, that have been alienated by and from the technology and application development industry because of intersecting and juxtaposed systems of gender, racial, and access inequality. Perhaps one of the central epistemic problematics for the project, then, can be posed as a question: Can we decolonize design anthropology, and to what success ordegree? What might this entail? Screenshot of the title deck for Tinn (by author). Decolonization is slippery. My “academic anthropology” is a historical ethnography of the ways media scientists after World War II shaped (and continue to shape) the gendered contours of global media flows in the British Empire, with a particular focus on sound, listening, and citizen-subject formation in Gibraltar. My work on Tinn gave me the opportunity to transform my critique of the violence done by media scientists into the starting point for a more ethical approach to user experience research with marginalized Native American, Latin@, migrant, and African American Oregonians living with tinnitus in Portland. Yet what I thought of as decolonizing and what my collaborators thought of as decolonizing was at odds in some instances. For one, while decolonizing anthropology attempts to re-balance the scales of recognition and redistribution in the research process, it is much more difficult to reconcile the colonial histories of designer and designed for. Yet, for my collaborators, this division didn’t actually matter. As Nephi, one of my politically astute collaborators, put it, “the ethics are too heady when we need material help. Someone has to do that work. It’s you today.” While Tinn began with my commitment to making the project open source (as resistance to the privatization and commoditization of collaboration — it’s not that simple), Nephi protested. “My labor is there, too. You’d give it away for free? There’s a long history of white men giving away the work of my people for free.” I said it wasn’t simple. While there were times where my collaborators and I didn’t agree on what constituted decolonization, we did agree on one thing: data poses a particularly tricky sociohistorical landscape for thinking about recognition, redistribution, and reconciliation. The rest of this post is dedicated to the complications of tracking data about tinnitus, and tracking data about vulnerable and/or marginalized users with tinnitus. (read more...)

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