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.
By Chorong Park
The intersection of ableism, ageism, technoableism, and metaeugenics reduce the accessibility and quality of health care for elders with disability experience.
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.
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.
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
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.
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.
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.
By Manna Mostaghim
Fertility leave — employer-sanctioned time off for fertility treatment appointments — is becoming a feature of modern employment relationships in the UK. Some public and private sector employers in the UK have fertility leave policies within their organizations; however, currently there is no “statutory right to time off for fertility appointments” in UK law. As of March 20th, 2023, a private members’ bill (the Fertility Treatment (Employment Rights) Bill) has had its second reading in the House of Commons to codify the right for employers to be required to “allow employees to take time off from work for appointments for fertility treatment.” But, as it stands, employees in the UK still require the beneficent support of their employers to receive support and fertility leave in their workplaces.
By Katherine Macfarlane and Irina Manta
Since fall 2021, when most colleges and universities reopened their campuses to in-person activities, it has become increasingly difficult for faculty and students with disabilities to obtain reasonable accommodations to teach or attend class remotely. Remote accommodations were granted freely during the first year of the COVID-19 pandemic, but in 2021, the in-person aspect of teaching and learning was suddenly deemed essential, and at many institutions, remote classes came to an end. Despite federal disability law’s requirement that each reasonable accommodation request be assessed individually, faculty and students alike were met with bright-line policies that remote teaching and learning were out of the question.
The language and logic used to deny these accommodations at universities across the country was suspiciously similar. We wondered to ourselves whether a memo had been circulated instructing universities about which magic words to employ to deny each accommodation request. But no matter what words are used, across-the-board policies that do not contemplate accommodation-based exceptions and fail to assess accommodation requests on an individual basis do not comply with federal disability law. A recent federal case brought by a high-risk professor against his university employer has recognized these well-settled principles and highlighted the problem with formulaic denials.