friends playing console video games. controller in hands closeup. neon lights.

Videogame Sanity Systems and Mad Representation

The Petrie-Flom Center Staff Leave a comment

By Alice Fox

Technological artifacts do not exist in a vacuum: they bear the undeniable markings of human histories, politics, blind spots, and biases – for better and worse. Consider, for example, the video game: everything in a video game must be created, decided upon, and often negotiated in a dynamic and lively way.

As I have written elsewhere, video games can directly embody and reproduce harmful stereotypes and misconceptions, while neatly packaging these dispositions as “the way things are” in the videogame world.  Video games can be a powerful source and foundation of “knowledge about the world” to which players are exposed – especially when games are played by younger people who may not have had exposure to a variety of different life experiences, people, and ways of knowing to recognize and “inoculate” themselves against problematic positions in a video game. If these flat, one-dimensional depictions are players’ first and frequent encounters with differences in race, gender, sexuality, and ability, these stereotypes and ignorant depictions can become incredibly sticky and difficult to undo. And unlike scientific experiments in mis/disinformation studies, video games rarely provide a debriefing session after the game ends!

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Wooden blocks with symbol of social equality concept on blue background.

Building a Disability Organization Rooted in Disability Justice

The Petrie-Flom Center Staff Leave a comment

By Dom Kelly

There’s a lot to say about the nonprofit sector and how it so often burns out, underpays, and devalues the humans who do the labor. There’s a pervasive narrative that this should just be accepted as a cost of doing good in the world. But for marginalized people who find themselves in this work for reasons that are connected to their identities, this kind of thinking ultimately pushes us out of the sector altogether.

Disability organizations are no exception to this.

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United States Capitol Building - Washington, DC.

How Comparative Law Can Counter Threats to the ‘Most Successful Global Health Program in Modern History’

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By Joelle Boxer

PEPFAR, the President’s Emergency Plan for AIDS Relief, is under threat. Some members of Congress are withholding reauthorization support while arguing, without evidence, that PEPFAR funds abortion.

This is untrue: U.S. law prohibits PEPFAR from funding abortion. That alone should resolve the current impasse and secure the program’s reauthorization. Should bad faith opponents require further reassurance, however, they need look no further than the local legal realities of the 25 countries and 3 regions where PEPFAR operates.

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Hundred dollar bills rolled up in a pill bottle

Reasonable Pricing Clauses: A First Step Toward Ensuring Taxpayers a Fair Return on their Public R&D Investment

The Petrie-Flom Center Staff Leave a comment

By Nikhil Chaudhry and Reshma Ramachandran

Earlier this month, the Department of Health and Human Services announced that it had successfully included a reasonable pricing provision in a $326M investment contract with Regeneron for development of a next generation monoclonal antibody therapy for COVID-19. This was the first time the Biden Administration had included such a provision as part of its research funding agreements with the private sector, demonstrating that it is indeed possible for the federal government to negotiate deals with pharmaceutical companies that ensure that products developed with public dollars are priced comparably to the global market.

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Siri, Apple's voice-activated digital assistant, tells iPhone user, "Go ahead, I'm listening," which also displays as text on the screen.

On Siri and Recognitive Violence

The Petrie-Flom Center Staff Leave a comment

By Joshua A. Halstead

As a disabled person who relies on speech recognition software to complete a range of daily writing tasks (from emails to book chapters), I am no stranger to the universe of voice assistants, having cut my teeth on Dragon Dictate in the ’90s.

Though I’m used to the software knowing my voice, that it now knows my location is uncanny. This discovery occurred on a morning stroll when Siri spelled “Urth Caffé” correctly, rather than, as was expected, scribing “earth café.” This is when I realized that my assistant had turned into a stalker.

In this short article, I argue that Apple’s decision to integrate user location data into Siri’s speech recognition system created a product that contributes to gentrification and could further marginalize disabled people.

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Hand with a red napkin washes the chalk board.

A European Cancer Survivors’ Right to be Forgotten?

Hannah van Kolfschooten Leave a comment

By Hannah van Kolfschooten and Mirko Faccioli

There are currently over 12 million cancer survivors in Europe. Due to improving cancer screening methods and medical treatment, this number is expected to grow every year. Former cancer patients often face multiple forms of discrimination throughout their lives. Many commercial companies make long-term cancer survivors “pay twice” – while having similar life expectancies as their peers, they are denied access to key services because of their former cancer status.

To combat this unfair practice, some European countries are establishing a “cancer survivors’ right to be forgotten,” also referred to as the “oncological right to be forgotten.” Italy’s parliament just passed a law to establish the right. Patients’ rights organizations and EU institutions are pushing for a “European cancer survivors’ right to be forgotten.” This post outlines the purpose of such a right and flags potential challenges in its adoption.

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Health visitor and a senior woman during home visit.

Caring for Patients with Serious Illness: Insights from Kristofer Smith

The Petrie-Flom Center Staff Leave a comment

Kristofer Smith, MD, MPP is the Chief Medical Officer of Landmark Heath, where he oversees efforts to establish a high-quality and clinically effective home-based medical care model for patients with serious illness.

We sat down with Dr. Smith to discuss his experience caring for patients with serious illness and developing programs to provide health care at home, among other topics. The following interview has been edited and condensed. Read More

the homepage of the PubMed website is seen on a computer screen through a magnifying glass.

On Searching for the Unknown with Unspeakable Names: Searching PubMed for Disability Research

The Petrie-Flom Center Staff Leave a comment

By P.F. Anderson and LaTeesa James

PubMed special queries are master search strategies on common, important, but challenging health topics, which are usually peer-reviewed. Disability certainly qualifies as a common, important health topic that is challenging to search – and yet, no PubMed special query exists for it. 

This oversight is concerning. Put simply, it’s important that disability as a topic is easily identifiable in the scholarly record. While there are specialized databases for the topic, such as NARIC’s REHABDATA, the global research community is most likely to begin with PubMed. Currently, structured vocabulary terms related to disability are scattered throughout PubMed’s medical subject heading (MeSH) trees, often without cross references to facilitate discovery, forcing discovery to largely depend on the unstructured language of whatever words were chosen by the authors to describe their research topics. This lack of consensus and consistency across professional disability terms, categories, and definitions contributes to a lack of comparability, discoverability, and access for disability data as well as research.  

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line drawing of computers, tablets, and televisions.

Autistic Screen Time: Swipe Left on Stigma

The Petrie-Flom Center Staff Leave a comment

By Maxfield Sparrow

I am an autistic person who has been using the internet as a social prosthetic device since 1983. I was born in 1967 and began therapy in 1972, so the iPad didn’t exist and the only screen time parents worried about was the five channels of broadcast television available twenty hours a day. TV was fine, but my real passion was books. I was hyperlexic and from a very early age I had an unquenchable thirst for written language. My obsession with reading was considered pathological, and adults took my books away to try to force me to socialize with other children instead.

It didn’t work. But it is sadly common that those of us with developmental disabilities are held to higher standards than everyone else. As children, once we are identified, everything about us is scrutinized. Well-meaning adults, fearing for our future, hold us to higher standards of everything from politeness to academic discipline to the age-appropriateness of our interests to the ways we move through the world. We’re not allowed to “get away with” the things non-disabled kids do every day.

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