Tag: Disability Studies

International Day of Persons with Disabilities: What Happens the Day After?

Twenty-eight years ago, in 1992, the United Nations General Assembly resolution 47/3 proclaimed December 3 as International Day of Persons with Disabilities. Immediately following the International Day for the Abolition of Slavery and followed by the International Day of Banks (yes), the International Day of Persons with Disabilities was and still is charged with the impulse “to promote the rights and well-being of persons with disabilities in all spheres of society and development, and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life.” Each year, a specific theme is chosen to direct public attention toward a specific issue. In 2018, it was “Empowering persons with disabilities and ensuring inclusiveness and equality.” In 2019, “Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda.” In 2020, “Not all disabilities are visible.” A product of a policy-oriented reformist environment, International Day of Persons with Disabilities helps to direct attention, mobilize action, and bring about material changes in the lives of people with disabilities. But what happens to these impulses on December 4th (besides the International Day of Banks)? (read more...)

“Doing Being a Latina,” or Performing Identities Through a Computer Voice

The ability to communicate is often taken-for-granted and imperceptible, despite being vital to everyday life. It defines our social performances as family members, professionals, and neighbors. Moreover, institutions as well as identities need to be “talked into being” (Heritage and Clayman, 2010). Although in many mundane situations we get by with meaningful bodily gestures (Goodwin, 1986) such as nodding, shaking the head, waving, and pointing, other interactions require us to use complex language processing skills and muscular control over the vocal organs and hands. (read more...)

On The Social Life of TBI

A Traumatic Brain Injury (TBI) is a common injury that occurs when a physical blow or force to the head damages the brain inside the skull—full stop. As such, TBI is a natural part of life in a world in which it is possible (and easy) to hit one’s head. It is often fatal, one of the leading “causes of death and disability” in the US (CDC 2015). This straightforward conception is codified in biomedical publication and practice, enshrined in the federal TBI Act of 1996 and national disability policy, and has even made brief appearances in popular film and public debate about the health risks of contact sports. This bio-political consensus is thus clear and plain: “TBI” indicates a singular event and its direct and natural bodily consequences.[1] (read more...)

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

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

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...)

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

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...)

As If I Were Blind…

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...)