Tag: Disability

Capacity and Medical Decision-Making in First- and Third-Person Perspectives

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by James Toomey

Imagine that you were to develop dementia and someone else had to make medical decisions on your behalf. How would you want them to decide? Then suppose that you had to make medical decisions on behalf of another person with dementia. Would you think about decision-making in the same way? A new study in AJOB Empirical Bioethics by myself, Jonathan Lewis, Ivar Hannikainen, and Brian Earp suggests that people may favor different decisions when deciding for others versus when deciding what they would want for themselves.

In the study, we presented a cohort of nearly 1,500 U.S. participants with a vignette based on one of the most persistent and difficult questions in bioethics. The vignette describes someone with ordinary, lifelong cognitive functioning considering the possibility that in the future they might develop dementia and need to make a significant medical decision. But many years later, after they have undergone cognitive decline sufficient to lose legal capacity, the very circumstances they had contemplated occur and they make the opposite decision.

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View on Namche Bazar, Khumbu district, Himalayas, Nepal.

Intersectionality, Indigeneity, and Disability Climate Justice in Nepal

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By Pratima Gurung, Penelope J.S. Stein, and Michael Ashley Stein

The climate crisis disproportionately impacts marginalized populations experiencing multilayered   and intersecting oppression, such as Indigenous Peoples with disabilities. To achieve climate justice, it is imperative to understand how multiple layers of oppression — arising from forces that include ableism, colonialism, patriarchy, and capitalism — interact and cause distinctive forms of multiple and intersectional discrimination. Only by understanding these forces can we develop effective, inclusive climate solutions.

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State of California flag on a flagpole.

California’s Reproductive Freedom Efforts Should Meaningfully Include People With Disabilities

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By Joelle Boxer

Last month, California Governor Gavin Newsom signed a package of nine reproductive health care bills, following the passage of fifteen such bills in 2022. While the state should be lauded for its efforts, it has come up short. Recent legislation largely excludes up to 25% of the adult population: Californians with disabilities.

People with disabilities in the U.S. experience wide disparities in accessing reproductive health care, rooted in a long history of oppressive reproductive control. California should take action now to address these disparities and fulfil its goal of becoming a “reproductive freedom state” for all.

This article will examine recent movement on reproductive health care legislation in California, explain its failure to meet the needs of Californians with disabilities, and suggest a path forward in line with principles of disability reproductive justice.

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

Videogame Sanity Systems and Mad Representation

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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

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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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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

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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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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

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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

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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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Cover image of Ashley Shew's book, Against Technoableism.

Symposium Introduction: Addressing Technoableism: Reforming Infrastructure and Disability Representation

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By Ashley Shew

Far too often, when people write and talk about technology and disability, stories are deeply shaped by ableism. Often when devices are painted as “solving the problem of disability” or “empowering disabled people,” they suggest that being disabled is itself a problem, and that people should try to be as nondisabled as possible. But pretending to be nondisabled is not a great way to live — to be in hiding or denial, to not give your body and mind the rest they deserve, to hurt yourself trying to live up to expectations and infrastructure sometimes literally designed to keep you out. Technology itself gets painted as heroic and important — and, please, investors, throw more money at the tech industry — when any disability is mentioned. Disability is often appealed to as a justification for technological development, and as a moral imperative toward investment in technological research. This is technoableism as I describe it in my book, Against Technoableism: Rethinking Who Needs Improvement. 

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