Disability in the United States
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This page has curated news from the United States. There are a total of 909 links.
Highlights
10 Ways Designers and Researchers Can Meaningfully Engage With Disabled People in 2023. Includes designing against ableism: “When I say Design Against, I mean: whatever social issue or group you want to design for, identify the structural factors that are really, materially shaping those problems and design against those instead.” (2022, Alex Haagaard)
In Ageing:
Ageist? Ableist? Who, Me? “Think what older people could learn from them about asking for help, adapting to impairment, and age pride! Think what younger people with disabilities could learn from olders about moving through life. Think how we’d all benefit if hearing and mobility aids were stripped of stigma. Let’s get interdependent!” (2023, Generations)
Disability At Home practical solutions and photographs that “document the ingenuity and creativity that caregivers and disabled people, including those with chronic illnesses, use every day to make home accessible.” (2022, Laura Mauldin)
In Black Lives Matter and Racial justice:
Black Disability Politics a book from Sami Schalk “explores how issues of disability have been and continue to be central to Black activism from the 1970s to the present [...] this work has not been recognized as part of the legacy of disability justice and liberation because Black disability politics differ in language and approach from the mainstream white-dominant disability rights movement.” (2022, Duke University Press) See an interview with the author on Essence.
A short history of people of color and the disability rights movement. an interview with Jennifer Erkulwater:
“Not only did activists in the 1970s fear that assertions of racial identity would divide people with disabilities from one another, but throughout the 1980s activists posed disability rights as the antithesis of welfare, at a time when the term “welfare” became deeply racialized. [...] White activists with disabilities sometimes argued that Blacks had to sit at the back of the bus, but the disabled couldn’t even get on the bus.” (2022, URevolution)
In COVID-19:
The Pandemic’s Legacy Is Already Clear: All of this will happen again. “America has little chance of effectively countering the inevitable pandemics of the future; it cannot even focus on the one that’s ongoing.”
“The new coronavirus exploited the country’s many failing systems: its overstuffed prisons and understaffed nursing homes; its chronically underfunded public-health system; its reliance on convoluted supply chains and a just-in-time economy; its for-profit health-care system, whose workers were already burned out; its decades-long project of unweaving social safety nets; and its legacy of racism and segregation that had already left Black and Indigenous communities and other communities of color disproportionately burdened with health problems.” (2022, The Atlantic)
High-Risk Pandemic Stories: A Syllabus. "We are not alone" (2022, Disability Visibility Project)
Long COVID Is Being Erased—Again What was once outright denial has morphed into a subtler dismissal. (2023, The Atlantic)
The Millions of People Stuck in Pandemic Limbo 'Each individual infection is its own high-stakes gamble. [...] Over the past year, as many Americans reveled in their restored freedoms, many immunocompromised people felt theirs shrinking.':
'As the coronavirus moves from a furious boil to a gentle simmer, many immunocompromised people (like everyone else) hope to slowly expand their life again. But right now, “it’s like asking someone who cannot swim to jump into the ocean instead of trying a pool,”' (2022, The Atlantic)
In Civil Society and Community:
The Hardest Thing to Carry: On Disability and Grief “It’s a terrible and beautiful contradiction that the disabilities that bonded us in life, that put us on the path to even meet, are the same ones that snatched my friends from me too soon.” (May, The Squeaky Wheelchair)
Assume that I can brilliant, bold video rejecting the self-fulfilling prophecy of negative assumptions about people with Down Syndrome. (Mar, CoorDown)
What I learned from the Generation of Disabled Activists Who Came After Me (2022, Time) An essay by Ben Mattlin, accompanying the release of Disability Pride: Dispatches from a post-ADA world.
Make Neurodiversity Boring an essay reflecting on the neurodiversity movement:
“Despite neurodiversity’s cultural currency, we have won surprisingly few shifts in autism service-provision and research, the primary areas the movement emerged to target. This reflects our community’s reluctance to translate critique into actionable strategies for change. Such efforts are slow, painstaking, and frankly boring next to the social media campaigns and the rarefied academic critiques that have captured the attention of many.” (May, Boston Review)
In Communication and Language:
Jordyn Zimmerman is redefining communication as a nonspeaking advocate for disability rights, describing “augmentative and alternative communication”:
‘It’s essentially all the ways someone may communicate besides speaking. It refers to any tool or method or support to help someone be heard or understood. The “augmentative” is usually meant to add to someone’s speech, and the “alternative” is usually meant to be instead of someone’s speech. For me, iPad paired with a text-based application serves as the tool that allows me to reliably and effectively be heard and understood.’ (2023, the 19th)
How Deaf and Hearing Friends Co-Navigate the World: “friendterpreting” and the everyday ways people communicate. (2022, Sapiens)
In Culture, Entertainment and Media:
Contemplating Beauty in a Disabled Body “My looks don’t fit into classical ideals of order, proportion, symmetry. So what was I looking for in that gallery in Rome?” (2022, New York Times Magazine) An essay by Chloé Cooper Jones, whose book Easy Beauty has just come out. I enjoyed her discussion of the book on longform, sadly no transcript.
Guide to Investigating Disability Issues (2023, Global Investigative Journalism Network)
The Squeaky Wheel: a brilliant parody disability news site - think the Onion, but for us (2022)
In Digital Accessibility and Technology:
Why Americans With Disabilities Use The Internet Less Frequently (2022, BOIA)
Ableism And Disability Discrimination In New Surveillance Technologies. How new surveillance technologies in education, policing, health care, and the workplace disproportionately harm disabled people (2022, CDT)
What Are the Top Barriers to Digital Inclusion in 2023? “79% of website users and 78% of app users said they feel frustrated because they don’t have as much independence as a sighted person when completing digital tasks.” (2023, American Foundation for the Blind)
Who’s in Charge? Information Technology and Disability Justice in the United States. 'Can disabled people be called “users” or said to “have access” to technology if they are regularly denied agency over how they use technology?'
"Disabled people in the United States are surrounded, defined, and, to some degree, controlled by data, technology, and information—from medical technology and therapies to educational systems to social and government services and policies that shape their lives. The extent to which they can access and use technologies to accomplish their own goals is less clear. This review discusses access to data and technology for people with disabilities, focusing on agency and digital transinstitutionalization—the extension of institutional frameworks, such as surveillance and control, from state hospitals into community settings via data-driven technologies." (2022, Just Tech)
In Disaster Risk Reduction and Crisis Response:
Texans with Disabilities During Winter Storm Uri. A qualitative study that shows:
“the hardships people with a wide range of disabilities experienced during this cascading disaster, including the inability to power life-giving medical equipment and the intensification of pain and health problems due to the loss of heat and water. Findings also show that participants were not passive victims in the face of these life-threatening challenges; disabled people and parents of those with severe disabilities went to extraordinary lengths to survive and to help others survive the disaster, including providing and receiving critical forms of care from family and community members during the storm.” (2022, Natural Hazards Center)
In Economics and Social Protection:
Equity for Whom? An Introduction to Private Equity’s Impacts on the Disability Community:
“Private equity poses a serious and urgent threat to people with disabilities, particularly those with multiple marginalized identities. People who rely on HCBS, autism services, accessible transportation, fertility assistance, affordable housing, or power wheelchair/scooter repairs, and people who are incarcerated in prison, jail, or living in institutions such as a nursing home, residential treatment facility, or intermediate care facility, have likely been deeply impacted by private equity over the past decade. For this reason, it’s imperative that the disability community oppose this profiteering and exploitation, and resist private equity’s encroachment.” (Oct, DREDF)
Voices of Disability Economic Justice a series led by disabled writers. “As our collaborative members work together to bring disability into the economic debate, people with disabilities who have experienced our broken systems firsthand are uniquely positioned to articulate what better public policy would mean for their lives.” (2022, TCF)
America Promises Equality for Disabled Students. It’s Failing. A project exploring “how our country’s education system underserves them—and the fight to change that.”:
‘It has been nearly 50 years since the Individuals With Disabilities Education Act (IDEA) passed, guaranteeing a “free appropriate public education” to disabled students. But our system is not living up to this promise. More than one-third of these students don’t graduate high school. The Department of Education’s Office for Civil Rights has more than 2,500 open investigations into complaints from parents of children with disabilities; some have been unresolved for over a decade.’ (2023, Mother Jones)
‘It’s Backdoor Accessibility’: Disabled Students’ Navigation of University Campus:
“Introducing the concept of ‘backdoor accessibility,’ this paper examines exclusionary practices and systemic ableism to propose that disabled students are routinely offered a lesser quality service that is argued to be ‘better than nothing.’ In order to navigate these barriers, many students reported the additional expenditure of time, resources and energy.” (2022)
In Employment, Business and Work:
Disability Inclusion Imperative a report showing how:
“the business case for hiring persons with disabilities has become even stronger. Specifically, companies that have led on key disability inclusion criteria over that time saw 1.6 times more revenue, 2.6 times more net income and 2 times more economic profit than other companies in the Disability Equality Index.” (2023, Accenture and Disability:IN)
Amazon Got a Perfect Score on Disability Inclusion—From a Group It Helps Fund – Mother Jones —From a Group It Helps Fund:
“Disability:IN released its annual “Best Places to Work” Disability Equality Index, which grades how well companies prioritize and accommodate disabled employees. One company that earned a perfect score: Amazon, which has been accused of disability discrimination by state agencies and current and former staff.” (2023, Mother Jones)
The Helen Keller Exorcism. Brilliant rollercoaster-ride of an episode, remembering Helen Keller and her myths today. (complete with transcript, 2022, Radiolab) See also a feature on Helen Keller's Legacy (Teen Vogue).
In Lived Experience and Opinion:
Profound discussion of how ableism enables all forms of inequity. “Ableism plays a leading role in how we frame, understand, construct and respond to race, class, gender, sexual orientation, ethnicity, nationality, criminal status, disability, and countless other identities.” (2023, Truthout)
In Mobility, Travel, Transport and Tourism:
How Uber and Lyft still fail their disabled passengers. See also a judgement that Uber doesn't have to provide wheelchair-accessible vehicles in every city. (2022, The Verge)
Taking on the Unfriendly Skies: Are Airlines Hearing Wheelchair Users’ Protests?
“As a high-level quad who flies on a regular basis, it’s disheartening to be asked for more patience when our rights continue to be violated and our lives are at stake. And though little seems to have changed for current flyers, what has changed is the groundswell of voices pushing to bring down one of the last major walls of exclusion from equal access to modern mass transportation since the ADA was passed 33 years ago.” (2023, New Mobility)
American Airlines to pay record $50 million fine over its treatment of disabled passengers. As well as allegedly mishandling or damaging 1000s of wheelchairs between 2019 and 2023:
“In an investigation into the carrier, the Transportation Department said it uncovered numerous infractions, including cases of American providing "unsafe physical assistance" to passengers. The alleged treatment "at times resulted in injuries and undignified treatment of wheelchair users," the agency said in an announcement Wednesday.” (Oct, CBS News)
“How the candidates, voters and media react to age and perceived ability will play a key role in determining the years ahead. Ageism and ableism are key actors in a drama played out on the highest stage, for the highest stakes.” (Jul, Disability Debrief)
In Relationships, Sex and Reproductive Rights:
Seeking Marriage Equality for People With Disabilities “When one partner is disabled and the other isn’t, getting married could mean giving up lifesaving health care and benefits from the government.” (2022, NYT)
2022 Anti-Filicide Toolkit. Parents murdering their disabled children is reported in the media as "justifiable and inevitable" and this contributes to a cycle of violence. (2022, Autistic Self Advocacy Network)
Contents
- Accessibility and Design
- Ageing
- Assistive Technology
- Black Lives Matter and Racial justice
- COVID-19
- Civil Society and Community
- Climate Crisis and Environment
- Communication and Language
- Conflict and Peace
- Culture, Entertainment and Media
- Data and Research
- Digital Accessibility and Technology
- Disaster Risk Reduction and Crisis Response
- Economics and Social Protection
- Education and Childhood
- Employment, Business and Work
- Gender Equality and Women with Disabilities
- Health
- History and Memorial
- Humanitarian, Migrants and Refugees
- Independent Living and Deinstitutionalization
- Indigenous People and Minority Communities
- International Cooperation
- Justice Systems and Legal Capacity
- Lived Experience and Opinion
- Mental Health
- Mobility, Travel, Transport and Tourism
- Policy and Rights
- Politics and Elections
- Relationships, Sex and Reproductive Rights
- Space Exploration
- Sport and Paralympics
- Violence and Harassment
Accessibility and Design
Overview
Pay Rate for Access Workers Now (PRAWN):
“Accessibility as a field is growing, however, compensation for access workers often remains stagnant or is framed as a volunteer opportunity. This benefits the inaccessible institutions and hinders progress on making long-term changes.” (Sep, Madison Zalopany and Alison Kopit)
Virginia Rose on Birding and Accessibility “I really wasn't planning on starting a movement.” (Sep, PopSugar)
Dungeons & Dragons taught me how to write alt text. (Jul, Eric Bailey)
Philadelphia is the country’s first “sensory-inclusive city.” What does that mean for people with other disabilities? (2023, Philadelphia Inquirer)
The Future of Design Is Designing for Disability Accessibility should not be a grudging afterthought. With planning, it can lead to elegant, beautiful, and engaging art. “Accessibility should include something beyond accommodation and into a source of inspiration, a driver of creativity, and even something playful and fun.” (2023, The Nation)
Accessibility lawsuits bring slow wins for disabled city residents “Lawsuits over inaccessible sidewalks, transit, libraries, and other public infrastructure are costing cities millions. But for disabled people of color, they may be the only route to equity” (2023, Prism)
New York City Sues Queens Library Architects Over Lack of Accessibility City officials argued that the building was not compliant with the Americans With Disabilities Act and other laws. (2023, New York Times)
One Way to a Better City: Ask Disabled People to Design It. David Gissen on Designing Cities for Disability (2023, Curbed)
10 Ways Designers and Researchers Can Meaningfully Engage With Disabled People in 2023. Includes designing against ableism: “When I say Design Against, I mean: whatever social issue or group you want to design for, identify the structural factors that are really, materially shaping those problems and design against those instead.” (2022, Alex Haagaard)
Why Do People With Disabilities Have to Sue To Get Accessible Sidewalks? (2022, Streetsblog USA)
More than 30 years after ADA, cities fail to be accessible (2022, ABC 15)
‘Where the bats hung out’: How a basement hideaway at UC Berkeley nurtured a generation of blind innovators (2022, Stat)
New York: What is the megacity like for people with disabilities? “New York City, one of the world’s largest and most diverse cities, is considered by some to be one of the least accessible in the United States when it comes to public transportation.” (2022, Aljazeera)
Accessible NYC A summary of what the city authorities are doing for accessibility and inclusion. (links to pdf, 2022, NYC)
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Housing
The Emotional Support Parrots vs. the Co-op Board “Three pet parrots at a Manhattan apartment building irritated their neighbors, who moved to evict them and their owner. The owner took the neighbors to court and was awarded $165,000 in damages.” (Aug, New York Times)
The Cost of Being Disabled in New York City Housing “Some landlords are asking disabled people to foot the bill for accommodations, leaving even those with ample resources without an accessible place to live.” (2023, New York Times)
How to Make Your Home Accessible Tap into the resources available from states, nonprofits, developers and housing groups to make spaces work for families of all abilities. (2023, The New York Times)
Disabled people of color continue to fight for accessible housing Housing insecurity compounds intersecting marginalizations for disabled people of color. Affordable, comprehensively accessible housing can help (2023, Prism)
Disability Justice Isn’t Possible without Housing Justice (2023, Urban Institute)
Designing for Disabilities: How to Pair Luxury With Access (2022, House Beautiful)
Biden Administration Releases Millions For Disability Housing. (2022, Disability Scoop)
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Ageing
Empowering Creativity for All: How Universal Design Makes Creative Aging Programs Thrive (Apr, Creative Aging Resource Journal from Lifetime Arts)
Ageist? Ableist? Who, Me? “Think what older people could learn from them about asking for help, adapting to impairment, and age pride! Think what younger people with disabilities could learn from olders about moving through life. Think how we’d all benefit if hearing and mobility aids were stripped of stigma. Let’s get interdependent!” (2023, Generations)
How America’s ageism hurts, shortens lives of elderly. (2022, Harvard Gazette)
America Was in an Early-Death Crisis Long Before COVID (2022, The Atlantic)
Are We Inadvertently Contributing to Discrimination Against Older Adults? “To avoid despair or paralysis, informing the public about pressing needs must be paired with concrete examples of what society can do differently.” (2022, Institute for Healthcare Improvement)
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Assistive Technology
The $1,000 Wheelchair. “How the YouTubers from JerryRigEverything are Making Affordable Wheelchairs Without the Red Tape” (Oct, New Mobility)
Style over stigma: Designer Destiny Pinto turns medical devices, such as ostomy bags and hearing aids, into fashion accessories. (Oct, Washington Post)
Paralyzed man unable to walk after maker of his powered exoskeleton tells him it's now obsolete. Repairs were only done after a media campaign:
“When one of its small parts malfunctioned, however, the entire device stopped working. Desperate to gain his mobility back, he reached out to the manufacturer, Lifeward, for repairs. But it turned him away, claiming his exoskeleton was too old”. (Sep, Neoscope)
Noland Arbaugh’s Life as the First Neuralink Recipient. (Sep, New Mobility)
After private equity firms gobbled up wheelchair makers, users pay the price in long repair times. (May, STAT)
How Disabled People Get Exploited to Build the Technology of War An essay exploring the “wheelchair-to-warfare pipeline”:
“The cutting-edge products that Big Tech and the Pentagon are developing could be rebuilding an untold number of lives. Instead, they’re being sent to the battlefield to ruin more.” (Apr, The New Republic)
The new norm a campaign video and photo series to change perceptions of hearing aids. (Mar)
Wearing hearing aids could reduce your risk of dying earlier. “For people with hearing loss, regular use of hearing aids could reduce the risk of dying earlier by 24 percent vs. not wearing them at all” (Jan, Washington Post)
Wheelchair Profiteering: A series, starting with How the For-Profit Industry Makes Money:
“If your goal is to sell wheelchairs to poor cash buyers without health insurance, then it makes sense to treat the wheelchair like a commodity. Since commodities are interchangeable, the seller with the lowest price gets the highest sales volume. If your goal is to sell wheelchairs to wealthy buyers or people with health insurance, then it makes sense to treat your wheelchair like a custom prosthesis and create wheelchairs with the highest profit margins.” (2023, Erik Kondo)
Long wheelchair repair times spur effort to get Massachusetts to act (2023, Boston Globe)
A Flexible Interface for Single-Switch Users A Usability Study of Nomon:
“Many individuals with severe motor impairments communicate via a single switch—which might be activated by a blink, facial movement, or puff of air. These switches are commonly used as input to scanning systems that allow selection from a 2D grid of options. Nomon is an alternative interface that provides a more flexible layout, not confined to a grid.” (2023, Assets Conference)
Hearing Aids Are Changing. “As more young people risk hearing loss, over-the-counter hearing aids are providing new options, but also confusing choices.” (2023, New York Times)
A Bride’s Prosthesis Made Not to Blend In, but to Shine. (2023, New York Times)
This researcher builds ‘cool stuff for blind people.’ He’s also trying to help transform society. (2022, PBS)
3D printing allows blind chemists to visualise scientific data. (2022, Chemistry World)
Elderly and Disabled Assistive Devices Market Size report by Acumen (2022, Global Newswire)
Disability At Home practical solutions and photographs that “document the ingenuity and creativity that caregivers and disabled people, including those with chronic illnesses, use every day to make home accessible.” (2022, Laura Mauldin)
This is old, but I liked seeing this wheelchair kitted-out to plow snow with tracks and an attached blade. (2016, WOWT 6 News)
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Black Lives Matter and Racial justice
The immovable veil of black disability: an introduction to Black disability threat theory and its application to the school to prison nexus:
“A major contribution of this theory is the notion that being visibly Black and visibly disabled causes moral panic to disabled and nondisabled populations belonging to any racial group including non-disabled Black American persons and disabled White American persons.” (Sep, Race, Ethnicity and Education)
Listening to Black Californians with Disabilities on healthcare experiences. (2023, California Health Care Foundation)
12 Black Disabled Activists and Advocates You Need to be Following (2023, World Institute on Disability)
Ableism, racism, and the quality of life of Black, Indigenous, people of colour with intellectual and developmental disabilities. “When BIPOC with intellectual and developmental disabilities lived in regions of the United States which were more ableist and racist, they had a lower quality of life, regardless of their demographics.” (2023, Journal of Applied Research in Intellectual Disabilities)
Black Disability Justice Syllabus. “An opportunity to honor the legacies of Black disabled artists, thinkers, activists, and leaders and a tool for future work.” (2023, Sins Invalid)
Racial Justice and Disability Justice: The Complex Journey (2022, Non Profit Quarterly)
A short history of people of color and the disability rights movement. an interview with Jennifer Erkulwater:
“Not only did activists in the 1970s fear that assertions of racial identity would divide people with disabilities from one another, but throughout the 1980s activists posed disability rights as the antithesis of welfare, at a time when the term “welfare” became deeply racialized. [...] White activists with disabilities sometimes argued that Blacks had to sit at the back of the bus, but the disabled couldn’t even get on the bus.” (2022, URevolution)
Racial disparities persist for disabled youth in spending on services for California children and teens with developmental disabilities. (2022, Los Angeles Times)
How Disability Exacerbates Anti-Blackness: Anti-Blackness and Ableism Led to Ryan Coogler's Arrest (2022, ARD)
Discussion of the book Mark of Slavery and its exploration of the intersection of slavery and disability. (2022, Disability Insider)
Asian Americans with disabilities are often overlooked. A new youth-led group aims to change that. (2022, NBC News)
Black Disability Politics a book from Sami Schalk “explores how issues of disability have been and continue to be central to Black activism from the 1970s to the present [...] this work has not been recognized as part of the legacy of disability justice and liberation because Black disability politics differ in language and approach from the mainstream white-dominant disability rights movement.” (2022, Duke University Press) See an interview with the author on Essence.
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COVID-19
Impact
Long-COVID rate among disabled people double that of able-bodied:
“Over 40% of COVID-19 survivors who had disabilities before the pandemic had symptoms for 3 months or longer in 2022, compared with 19% of those without disabilities, further widening health disparities, finds a new report published in the American Journal of Public Health.” (Sep, CIDRAP)
A study on the COVID-19 “mortality burden” for people with and without intellectual and developmental disability. “The COVID-19 mortality burden was greater for people with than without IDD during the first year of the pandemic. The continued practice of postmortem diagnostic overshadowing prevents analyzing whether this difference continues through today.” (2022, Disability and Health Journal)
How Masking Changed My Experience of Being Deaf: “The pandemic forced me to communicate differently.” (2022, The Atlantic)
COVID continues to hit nursing homes harder, “Cases are surging everywhere, and nursing home residents remain more likely to face severe illness and death.” (2022, 19th News)
Covid is making more people disabled and exposing America's tattered safety net (2022, MSNBC)
"COVID-19 Likely Resulted in 1.2 Million More Disabled People by the End of 2021" More information would be needed to substantiate the claim about 1.2 million disabled people, as it’s not clear whether higher numbers are due to changes in individual circumstances or changes in the environment. (Thanks to Jennifer Madans for background on this., 2022, American Progress)
Employment Consequences of COVID-19 for People with Disabilities and Employers. "The pandemic adversely affected employment of PWD as reported by workers and employers. Findings parallel the experience of the non-disabled workforce, but reveal vulnerabilities that reflect disability consequences and the need for job accommodations." (2022, Journal of Occupational Rehabilitation)
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Response
What to Do if You Have COVID A guide for preparing for illness, preventing spread to others, managing symptoms, and recovery (2023, People's CDC)
The Pandemic’s Legacy Is Already Clear: All of this will happen again. “America has little chance of effectively countering the inevitable pandemics of the future; it cannot even focus on the one that’s ongoing.”
“The new coronavirus exploited the country’s many failing systems: its overstuffed prisons and understaffed nursing homes; its chronically underfunded public-health system; its reliance on convoluted supply chains and a just-in-time economy; its for-profit health-care system, whose workers were already burned out; its decades-long project of unweaving social safety nets; and its legacy of racism and segregation that had already left Black and Indigenous communities and other communities of color disproportionately burdened with health problems.” (2022, The Atlantic)
Biden declaring the pandemic over disregards the danger disabled Americans face and “has shown how easily it is willing to view people with disabilities as pesky asterisks.” (2022, MSNBC)
People with Disabilities and COVID-19 Economic Impact Payments “Persons with disabilities were significantly more likely to spend their checks on basic needs, like food and rent, and less likely to spend on second-order items like charity or savings. These results suggest that future stimulus efforts should consider an increased amount for persons with disabilities.” (2022, Journal of Poverty)
Disabled Americans Push to Improve on COVID-Era Policies (2022, Time)
Blind people need more accessible at-home coronavirus tests (2022, GBH)
The White House releases a plan to help people who are especially vulnerable to Covid-19. (2022, NYT)
Biden and CDC's Covid-19 variant guidelines "have disabled people feeling left for dead" (2022, MSNBC)
High-Risk Pandemic Stories: A Syllabus. "We are not alone" (2022, Disability Visibility Project)
Disabled Deaths Are Not Your “Encouraging News” '“Comorbidities” is a weaselly, cruel, violent word.' (2022, Disability Visibility Project)
The Equal Employment Opportunity Commissions details when COVID-19 can be a disability including if you get fired because of having symptoms of COVID-19 (2021, The Hill)
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Living with COVID-19
Biden Dialed Back Covid Safety—Then Got It “The president’s diagnosis is a wake-up call to wider public health failures he should address.” (Jul, Mother Jones)
Masks Are a Symbol of Solidarity. “Mask bans are ostensibly about public safety. The result would be disastrous for public health—but it goes beyond that, too.” (Jun, The Nation)
1,374 Days My life with long covid. (2023, NYT)
NYC Has Left People With Long COVID Behind Living with long COVID in NYC means living an increasingly lonely existence. (2023, Hell Gate)
Long COVID Is Being Erased—Again What was once outright denial has morphed into a subtler dismissal. (2023, The Atlantic)
Long Covid disabled them. Then they met a 'broken' Social Security disability process. (2023, CNN Business)
The Long COVID Survival Guide How to Take Care of Yourself and What Comes Next, a “patient-to-patient guide for people wliving with long COVID”. (2022, Experiment Publishing)
Long Covid is keeping millions out of work “Fixing the labor shortage means treating, accommodating and mitigating long Covid. It also requires building a society in which disabled people can participate.” (2022, the Guardian)
Long COVID Has Forced the U.S. to Take Chronic Fatigue Syndrome Seriously. “At best, most medical professionals know nothing about ME/CFS [myalgic encephalomyelitis, or chronic fatigue syndrome]; at worst, they tell patients that their symptoms are psychosomatic, anxiety-induced, or simply signs of laziness. [...] Every ME/CFS patient I’ve talked with predicted long COVID’s arrival well before most doctors or even epidemiologists started catching up.” (2022, The Atlantic) See also Ed Yong's reflections on reporting on long COVID and other chronic illnesses in a sensitive way.
Biden's long Covid plan is a good start. But it needs to go further. (2022, Stat)
Black Covid long-haulers say doctors dismissed their symptoms, so now they’re relying on one another for support. (2022, NBC News)
Long Covid keeps millions of Americans out of workforce. Recent research estimates that 2 to 4 million people are out of work due to Covid symptoms after the infection period. (2022, CNBC)
Many try to return to normal from COVID, but disabled people face a different reality “All we're really asking for is for a masking policy that will allow us to be able to go to the store, to go to the doctor, go get the mail, without risking [our health],” (2022, NPR)
Rest May Be the Best Treatment for Long COVID. Our Disability Policies Should Reflect That. “The continuing crisis around long COVID should inspire policymakers to embrace a more flexible frame of reference around what it means to be disabled, and to design more generous short-term disability policies, including a federal short-term disability benefit. Allowing long haulers to rest in the short term might help them avoid years or decades of significant, often disabling long-term health consequences.” (2022, TCF)
Patients with long covid symptoms face tough disability benefit fights: "Patients and doctors say safety net is unprepared for novel claims stemming from the pandemic". (2022, Washington Post)
The Millions of People Stuck in Pandemic Limbo 'Each individual infection is its own high-stakes gamble. [...] Over the past year, as many Americans reveled in their restored freedoms, many immunocompromised people felt theirs shrinking.':
'As the coronavirus moves from a furious boil to a gentle simmer, many immunocompromised people (like everyone else) hope to slowly expand their life again. But right now, “it’s like asking someone who cannot swim to jump into the ocean instead of trying a pool,”' (2022, The Atlantic)
At-Home Coronavirus Tests Are Inaccessible to Blind People: “It’s your personal health information, you should be the first to know." (2022, NYT)
What Does ‘Living With Covid-19’ Mean For Disabled And Chronically Ill People? A useful balanced view of pessimistic and hopeful outcomes. (2021, Forbes)
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Civil Society and Community
Three Indicted for Conspiracy to Launder Over $1 Million from Online Fraud Scams (Sep, U.S. Attorney's Office, District of Columbia) The three were Deaf people and part of the Deaf community, and one of them, Chidi Olujie, was President of the Nigerian National Association of the Deaf (NNAD).
A Prominent Accessibility Advocate Worked With Studios and Inspired Change. But She Never Actually Existed. An extraordinary investigation into accessibility advocates that appear to have been fictional creations. (Aug, IGN)
“Pride might work if you don’t want to challenge ableism and reject white supremacy culture. For many, ‘Disability Wrath’ feels like a better way to describe what’s being lost and pushed aside.” (Jul, Crip News)
The Power of Participation: How Philanthropy Can Center People on the Margins. (Jul, Disability & Philanthropy Forum)
“The DeafBlind Leadership NOW (DBLN) movement ignited on July 22, 2024, when a hearing-sighted person was appointed as the Executive Director of Helen Keller National Center (HKNC), once again passing over talented and qualified DeafBlind candidates.” (Jul, DeafBlind Leadership NOW)
Direct Action Planning Resource for (and by!) Sick and Disabled Comrades (May, This Autonomia)
MacKenzie Scott’s Open Call Awards Give Disability-Focused Nonprofits Breathing Space. (May, Inside Philanthropy)
The Hardest Thing to Carry: On Disability and Grief “It’s a terrible and beautiful contradiction that the disabilities that bonded us in life, that put us on the path to even meet, are the same ones that snatched my friends from me too soon.” (May, The Squeaky Wheelchair)
Dignity of Risk and Self-Determination in the Disability Rights Movement (May, Creating Change: The Online Journal of Zines about Social Movements)
Make Neurodiversity Boring an essay reflecting on the neurodiversity movement:
“Despite neurodiversity’s cultural currency, we have won surprisingly few shifts in autism service-provision and research, the primary areas the movement emerged to target. This reflects our community’s reluctance to translate critique into actionable strategies for change. Such efforts are slow, painstaking, and frankly boring next to the social media campaigns and the rarefied academic critiques that have captured the attention of many.” (May, Boston Review)
Assume that I can brilliant, bold video rejecting the self-fulfilling prophecy of negative assumptions about people with Down Syndrome. (Mar, CoorDown)
Synagogues can better serve those with disabilities (Feb, JNS)
The Road to Disability Inclusion Report three stories exploring the role of philanthropy. (Feb, Disability & Philanthropy Forum)
Spaces on the Spectrum a book on “How Autism Movements Resist Experts and Create Knowledge”. (Jan, Columbia University Press)
Accessibility Advocates Oppose Disability Simulations “Why do you have to wait until you experience it to realize that there’s something important in what I’m telling you?” and a collection of other reasons people raise not to use disability simulations. (2023, Skift Meetings)
Disability advocates are staging a mass commitment ceremony to raise awareness about marriage penalties. “there are marriage penalties baked into existing benefit programs related to income. These rules prohibit people with disabilities from marrying not explicitly, but implicitly because they would no longer be eligible for benefits.” (2023, the 19th) See photos and report in the New York Times.
Newly disabled people aren’t given a ‘how-to’ guide. Disability doulas are closing those gaps: “The community care practice, pioneered by queer women of color, reorients newly disabled people to a different life – a necessity that has grown during the pandemic era.” (2023, The 19th)
The Road to “Beyond Tokenism” on the roles of people with intellectual disabilities in leadership positions on committees and boards of organizations. (2023, Samuel Centre for Social Connectedness)
Focus on disability rights growing, but intersectional support lags. Exploring foundation funding of disability rights. (2023, Candid)
Borealis Philanthropy and Ford Foundation Launch $1 Million Disability x Tech Fund to Advance Leadership of People With Disabilities in Tech Innovation. (2023, Ford Foundation)
Autism research at the crossroads “The power struggle between researchers, autistic self-advocates and parents is threatening progress across the field.” (2023, Spectrum)
Why Fund Disability Rights and Disability Justice? a fact sheet for funders. (2023, Disability & Philanthropy Forum)
What I learned from the Generation of Disabled Activists Who Came After Me (2022, Time) An essay by Ben Mattlin, accompanying the release of Disability Pride: Dispatches from a post-ADA world.
32 Years After the ADA, People with Disabilities Still Are Left Behind in Faith Institutions as religious organizations have exemptions from the law. (2022, Respect Ability)
5 Reasons Why Disability Activism Is Still Hard One is that “Like the rest of society, disabled people are divided and polarized” (2022, Forbes)
Foundations Pledge More Than $3 Million to Launch Disability-Focused Philanthropy-Serving Organization. See also on the disability inclusion pledge which has been signed by over sixty philanthropic organizations. (2022, Disability & Philanthropy Forum)
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Climate Crisis and Environment
How Extreme Heat Burns Chronically Ill Workers For the third of US workers who spend the day outdoors, “beat the heat” advice doesn’t cut it. (Aug, Mother Jones)
Scorching summers bring deadly heat for people with disabilities. (Aug, Stat)
Mapping Injury “Sunaura Taylor on what the environmental and disability movements can learn from one another.” (Aug, Boston Review)
States Could Help Disabled People Survive Climate Change —By Involving Them. “Independent living centers save lives in extreme weather. Why won’t more agencies give them a say?” (Jul, Mother Jones)
Disabled Ecologies: Lessons from a Wounded Desert. a book by Sunaura Taylor:
“What we live with in the present, and will for decades to come, even under the best-case scenarios, is mass ecological disablement of the more-than-human world. Arriving in Tucson in the summer of 2017 to research the pollution I had long understood to have caused my own disability, I recognized intimately just how utterly entangled this mass disablement of nature is with the disablement of human beings” (May, University of California Press)
How a team of scientists is helping people hear the eclipse “We mapped the bright light of the sun to a flute sound.” (Apr, CNN World)
How people with disabilities can experience the total solar eclipse 'Sight is only one of our senses' (Mar, USA Today)
Visually impaired students can ‘get a feel for’ eclipses With support from NASA, scientists published a set of tactile graphics on the 2024 total solar eclipse:
“We pick a set of unique textures to use on the master to signify different items, so the sun feels different than the Earth. This way, the textures of the graphics become part of the story being shared. For example, in a model of the sun’s surface, we use Spanish moss to create the dynamic texture of the sun.” (Mar, Fast Company)
How climate change risks disproportionately impact people with disabilities. Video feature on disproportionate impact of natural disasters. (2023, PBS NewsHour)
Rituals for Climate Change: a book on A Crip Struggle for Ecojustice: “offers an often-overlooked perspective on climate-grief, interdependence, and resilience. Disabled people know how to adapt to a world that is ever changing without considering them” (2023, Punctum Books)
Climate Crisis Makes Us Recognize Our Limits;
“Disability has forced me to reckon more forthrightly with the limits of my flesh, to confront the truth that bodies and minds cannot do it all. It has helped me learn to embrace rest, to resist the voices that clamor for more, always more. But disability has also taught me to push back against injustice, to fight hard against the structural barriers that stand in disabled people’s way. Both of these insights are powerful tools for confronting climate change.” (2023, Truthout)
Activists with disabilities want to lead the climate fight despite barriers in their way “Disability and the disability community, we lead with joy and love. And that is such a huge thing that I feel like is often missing from the climate conversation,” (2023, 19th News)
Temperature Regulation Tips for Wheelchair Users How to Stay Safe and Comfortable (2023)
Energy Storage Can Help People with Disabilities Through Extreme Weather Events. (2023, The Equation)
Climate change efforts won’t work if they exclude people with disabilities. “Ultimately, disability-inclusive approaches to climate action increase the safety, flexibility and accessibility of climate solutions for society as a whole.” (2023, Spokesman-Review)
Illegalized Bodies: Addressing Disabled Vulnerabilities and Adaptation to Climate Change based on case studies from the US and Philippines. (2022, Towson University Journal of International Affairs)
Poet and Activist Naomi Ortiz Talks About Ecojustice and Self Care: “Ecojustice to me is how we can live and balance the best we can and honor the fact that we have different needs.” (2022, WNYC Studios)
It’s not just heat stroke. Extreme temperatures pose special risk to people with chronic illness (2022, Statnews)
In best of times, New Orleans is hard on people with disabilities. In hurricanes, it's deadly. (2022, Nola)
Ageing and the Climate Crisis aging (2022, ASA Generations)
Where Food Sustainability and Disability Clash “Services like grocery and meal delivery are generally not environmentally or worker-friendly, using lots of single-use plastic and relying on underpaid gig workers. But they’re often the safest and most accessible avenues for disabled and chronically ill people.” (2022, FoodPrint)
Climate change is forcing care workers to act as first responders. “A new pilot program in California aims to provide the training and resources they need to take care of their clients and themselves. But advocates say increased responsibility should equal more pay.” (2022, 19th News)
Severe weather can mean life or death for people with disabilities. (2022, Fox9)
Ensuring the Safety of People With Disabilities During Climate Change (2022, Santa Clara University)
How heeding disabled people can help us survive the climate crisis. (2022, Slate)
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Communication and Language
Overview
Going Tactile: Life at the Limits of Language A book by Terra Edwards, an ethnographic study of the DeafBlind protacticle movement:
“When the world is collapsing around you, and existence is at stake, how can language be of use, where are its limits, and how can we understand the forms of meaning that lie beyond it?” (Aug, Oxford University Press)
Netflix's new top documentary 'Tell Them You Love Me' highlights a misleading promise An essay arguing that ‘“Facilitated communication” has sparked passionate debate for years. But despite overwhelming scientific evidence against the method, its persistence remains.’ (Jul, MSNBC)
Augmentative and Alternative Communication: Alice Wong on how using AAC tech changed her relationships:
“As I tried to adjust to my new body. I had to adjust to the way I presented myself to the world as a nonspeaking person. I had a new disability identity and was part of a new segment of the disability community. It was a bit intimidating being an outsider who is slowly easing into a new way of being while still mourning my voice, which expressed so much of my personality. I entered a world where time has slowed down. Conversations are now stilted, extended in a way that gives me anxiety and pressure to keep up with normative speaking speeds and patterns.” (May, Teen Vogue)
I Lost My Ability to Speak After Surgery. Here’s What the the Passy Muir® Valve Means to Me.
“The worlds of speech and silence intersect and overlap. Silence isn’t static or limiting. Silence is not an empty void. Silence has a landscape of its own. Silence has its own dimension, a space that enables another way of thinking and being. There is dignity in all forms of communicating.” (2023, Teen Vogue)
DeafBlind people are creating a new language a video feature on protactile, “a language of touch”. (Has audio-description and ASL, 2023, PBS)
How tactile graphics can help end image poverty. “Tactile graphic design is an art of transformation: what appeals to the eye may be cluttered and chaotic to the fingertips.” (2023, MIT Technology Review)
Jordyn Zimmerman is redefining communication as a nonspeaking advocate for disability rights, describing “augmentative and alternative communication”:
‘It’s essentially all the ways someone may communicate besides speaking. It refers to any tool or method or support to help someone be heard or understood. The “augmentative” is usually meant to add to someone’s speech, and the “alternative” is usually meant to be instead of someone’s speech. For me, iPad paired with a text-based application serves as the tool that allows me to reliably and effectively be heard and understood.’ (2023, the 19th)
DeafBlind Communities May Be Creating a New Language of Touch. “Protactile began as a movement for autonomy and a system of tactile communication. Now, some linguists argue, it is becoming a language of its own” (2022, New Yorker)
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Sign Languages
Hawaii's Deaf Community Is Struggling With Lack Of Certified ASL Interpreters (Apr, Honolulu Civil Beat)
‘A beautiful way of saying a lot’: sign language brings benefits to the organic chemistry classroom. “We’ve created this organic chemistry lexicon with the Deaf community in mind, but we are starting to see its universal design advantages.” (Mar, Nature)
American Sign Language Reveals Wordplay Beyond Sound a learner of ASL finds new ways to wordplay. (Mar, New York Times)
NFL Player learning ASL and bringing his own flair to the language (2023, NPR)
Sign Language Is Often Glamorized. So Why Isn’t Accessibility Taken More Seriously? (2023, Elle)
Deaf rappers who lay down rhymes in sign languages are changing what it means for music to be heard. Dip-hop “signals an independent style grounded in both hip-hop and Deaf culture.” (2023, The Conversation)
How recognizing American Sign Language will serve Hawaiʻi's local deaf community. (2023, Hawaiʻi public radio)
How ASL performer Justina Miles stole the show at Super Bowl LVII. (2023, CNN)
Native American sign language arrives at the Super Bowl. (2023, Washington Post)
Crip Linguistics Goes to School:
“Because the school environment provides another way for deaf children to acquire language, professional signed language fluency is critical. Yet, in other second language acquisition contexts, fluency is not necessary for effective teaching and often highly racialized. If perceived fluency is often dependent on proximity to whiteness, and language fluency is not necessary for effective teaching, then why is it necessary to require professionals to be fluent in signed languages before teaching and working with deaf children?” (2023, Languages)
How These Sign Language Experts Are Bringing More Diversity to Theater “As productions increasingly include characters and perspectives from a variety of backgrounds, deaf and hearing people who translate the shows for deaf audiences are trying to keep up.” (2023, New York Times)
Why Sign Language Was Banned in America part of a video series exploring sign language. (2022, Storied, PBS)
How Deaf and Hearing Friends Co-Navigate the World: “friendterpreting” and the everyday ways people communicate. (2022, Sapiens)
How Sign Language Evolves as Our World Does. (2022, NYT)
The Need For Black Sign Language Interpreters In Hip-Hop (2022, Okayplayer)
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Braille
Braille cookbooks bring blind cooks recipes. “Library of Congress arm offers free print-on-demand Braille cookbooks to users, and hundreds are taking advantage of it” (Jan, Washington Post)
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Conflict and Peace
Israel-Palestine Conflict
Disability Divest: We Demand the Disability Establishment End Its Relationships with War Profiteers: “Disability rights organizations go further than accepting money from war profiteers: they honor them with disability inclusion awards.” (Jul, Disability Divest)
Letter to Biden & Harris: Immediate Demands for Disabled Palestinians (Jul, Disability Demands)
Palestine X Disability Justice Syllabus (Jun, Disability Visibility Project)
Accessibility-barriers caused by pro-Palestine protest a rejection of the protests by a student with disability. (May, Jerusalem Post)
At this student encampment, Deaf protesters built a model for accessibility
“Deaf pro-Palestine students joined their hearing peers at the now-cleared George Washington University encampment. Volunteer interpreters made that multilingual organizing possible.” (May, The 19th)
Disabled veteran files lawsuit alleging UC Davis pro-Palestinian encampment blocks pathway. “Encampment representative claims this is a ‘lawfare’ tactic to silence students”. (May, Daily Democrat)
Palestine is Disabled “A free Palestine is a disability justice issue. Disability justice will not win without a free Palestine. Where disabled people live in a land that is at peace. Where we get to just be.” (Jan, Disability Visibility Project)
Disability Justice Activists Organize to Help Palestinians Stay Connected Organizers are distributing digital SIM cards directly to people in Gaza amid communication blackouts. (Jan, Truthout)
Why Palestinian Liberation Is Disability Justice “I’m no expert but I know what it means to be dehumanized, rendered disposable, and oppressed. I know that all people deserve freedom. I know that genocide is a mass disabling event and a form of eugenics.” (2023, Disability Visibility Project)
Crip Call to Action: why disabled people living in the US need to be calling for a long lasting ceasefire in Israel-Palestine. (2023, Disability Visibility Project)
What Does Disability Justice Mean in Gaza? On debility, drones, and solidarity. (2023, Sluggish)
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Culture, Entertainment and Media
Overview
What’s So Funny About Disability? Comedian Tina Friml on Being “Unforgettable” (Sep, The Stranger)
Ford and Mellon Foundations Announce 2024 Disability Futures Fellows:
“a groundbreaking group of 20 visual and performing artists, writers, and filmmakers for their transformative cultural contributions. Each fellow will receive an unrestricted $50,000 grant” (Jul, Ford Foundation)
‘A positive step forward’: Mattel launches first blind Barbie. (Jul, the Guardian)
Disability Works “A cultural history of disability, performance, and work in the modern United States” (Jul, NYU Press)
Wish You Were Here A roundtable on how to create radically welcoming access at the theatre. (Jun, American Theatre)
What if the Disabled Characters Were Just Going About Their Day? ‘Madison Ferris and Danny J. Gomez star in the meet-cute “All of Me” — proof that depictions of disability onstage don’t have to be “a buzz kill,” as Ferris puts it.’ (May, New York Times)
An Instagram-Ready Immersive Museum Uses Braille. But Is It Accessible? “Roy Nachum designed the spectacle-filled Mercer Labs, which he touts as inclusive. But some advocates for blind people say his use of Braille can feel exploitative.” (Mar, New York Times)
9 Books that Center Deaf and Hard of Hearing Characters (Mar, Electric Literature)
How Alien We Seem: On Being Blind and Obsessed with Photography. “M. Leona Godin Considers, Among Other Things, the Enduring Trope of the Blind Pencil Vendor” (Jan, Lithub)
Christine Sun Kim: Oh Me Oh My “In this monograph, the groundbreaking work of the American-born, Berlin-based artist Christine Sun Kim is explored through essays, short texts and reflections, an interview and abundant large-scale images of Kim’s work.” (Tang)
Her Guide Dog Inspired Her Art. “After losing her sight in an accident, Emilie Gossiaux found meaning and art in a bond with her dog, London, celebrated at the Queens Museum.” (2023, New York Times)
How deaf fans of opera can feel the music with Lyric Opera’s new shirt “A pilot program at Lyric Opera of Chicago aims to tailor the opera experience by offering wearable technology to patrons” (2023, Washington Post)
Hear the Dance: Audio Description Comes of Age Recent experiments in describing dance, like the film “Telephone,” approach it not just as an accessibility service but as a space for artistic exploration. (2023, New York Times)
Disrupting Museum Behavior: An Exploration of the Art Institute of Chicago’s “Cripping the Galleries”. (2023, American Alliance of Museums)
Museum Makes Major Acquisition. “The San Francisco Museum of Modern Art announced the acquisition of more than 150 works by 23 artists with developmental disabilities from three Bay Area art centers.” (2023, Disability Scoop)
One custom costume at a time father and son make Halloween accessible to kids with disabilities. (2023, CNN)
Britney Spears' book: The Woman in Me. Review:
‘Anyone looking for starry anecdotes or studio vignettes won’t find them here. Instead, The Woman in Me tells a focused story that makes inarguable the ties between patriarchy and exploitation, and deserves to be read as a cautionary tale and an indictment, not a grab-bag of tabloid revelations. After all Spears has lost, the sharpness of her perspective is a miracle. She repeatedly questions why – whether as a teenager in a crop top “corrupting” the youth, or a 25-year-old getting drunk at the club – she was perceived as “dangerous”. May her truth pose a legitimate threat to the system that exploited her.’ (2023, Guardian)
Stephen King's "Holly" reframes his hero's mental illness “Holly Gibney's anxiety and OCD helps to solve problems, not create them” (2023, Salon)
Comedian Nina G. Is Challenging Stereotypes Of People With Disabilities — One Joke At A Time. (2023, Huffpost)
Disabled Creatives in Comics: Interview with Tee Franklin (2023, Disability Visibility Project)
Dean Strauss Illustrates Disabled Life in Bright, Beautiful Ways “I got into art out of spite.” (2023, Shuttershock)
Art is at the Heart of Disability Justice “I think the way I decide to live now, which is very different than how I decided to live previously, is to welcome all of myself into my body, and not try to shut down the undesirable parts of myself.” (2023, Narrative Initiative)
Georgia O’Keeffe Made These Works After Going Blind. (2023, ARTnews.com)
“Our Hands”: Reading with DeafBlind Poet John Lee Clark. (2023, Public Books)
Mattel launches first Barbie with Down syndrome to ‘counter social stigma’. (2023, Los Angeles Times)
Performance by Gaelynn Lea a musical welcome to Microsoft's Ability Summit. (2023, MSFT Enable)
A review of the book 'Turn on the Words!: Deaf Audiences, Captions, and the Long Struggle for Access' (2023, H-Net)
All Sorts of Secret Treasure Feature on DeafBlind poet John Lee Clark and his debut poetry collection How to Communicate. (2022, Poetry Foundation)
An Art in America edition dedicated to Disability Culture. (2022, Art in America)
Why Beyoncé and Lizzo Changed Same Lyric on Their New Albums. (2022, Time) See also a linguistic discussion of the word and how it is used differently across communities of English-language speakers, and frustrations with holding Black artists to higher standards.
‘Access as an Ethic’: the dancers at Kinetic Light think about “access as an ethic, as an aesthetic, as a practice, as a promise, as a relationship with the audience [...] The disability arts community is really in a moment of vast experimentation.” (2022, NYT)
Mean Baby by Selma Blair review “Written with warmth and candour, the actor’s new memoir chronicles her alcoholism and MS diagnosis – alongside tales of dressing up with Carrie Fisher” (2022, the Guardian)
As Lizzo was called out for ableism, many Black disabled people felt overlooked. (2022, NPR) See also on BBC
Barbie unveils its first-ever doll with hearing aids (2022, CNN)
How The Grammys Got Accessibility Right, And What They Could Have Done Better - An Interview With Lachi (2022, Forbes)
Disability in Theatre: Strategies for Combating Ableism by Meeting Actors’ Access Needs. (2022, On Stage Blog)
Why Music Videos Present A Unique Opportunity For Disability Inclusion (2022, Forbes)
Review of ‘True Biz,’ by Sara Novic (2022, NYT) See also a discussion on Power, Privilege, and Love in a Residential School for Deaf Students (Electric Literature).
Contemplating Beauty in a Disabled Body “My looks don’t fit into classical ideals of order, proportion, symmetry. So what was I looking for in that gallery in Rome?” (2022, New York Times Magazine) An essay by Chloé Cooper Jones, whose book Easy Beauty has just come out. I enjoyed her discussion of the book on longform, sadly no transcript.
Sofía Jirau Makes History as the First Victoria’s Secret Model With Down Syndrome (2022, Glamour)
A New Coalition Amplifies Disability Culture in the Music Industry (2022, NYT)
Disability Justice from A to Z A Coloring Book For Our Communities (2022, Sins Invalid)
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TV and Film
Audiences are Waiting for Hollywood to Greenlight Disability Breaking down barriers keeping mid-career disabled screenwriters from reaching their full commercial and creative potential. (Jul, Inevitable Foundation)
Directing While Disabled: What I Learned Directing My First Short Film with A Physical Disability (May, Respect Ability)
Disabled Kids Are Rarely In Films. We're Aiming To Fix That. “When parents see their families portrayed authentically, it fosters a sense of validation, empathy and belonging.” (May, Huffpost)
"To Film with Your Ears": Reinventing Cinematic Language with The Tuba Thieves. A profile of Alison O’Daniel. (May, PBS)
Oscar contender Poor Things is a film about disability. Why won’t more people say so? (Mar, The Conversation)
How Dune shows us the power of language – including sign language:
“While not deaf themselves, Dune’s characters show us deaf gain through deft manipulation of their environment, from the stealth of their signs to their attunement to the vibrations they make in the sand, which they use to attract or repel the giant beasts below.” (Mar, The Conversation)
Oscars: Academy Outlines Its Disability Accessibility Efforts “The 2024 Oscars will include confidential accessibility requests for all nominees and guests, captioning, audio description, in-theater assisted listening devices, accessible seating and parking, and a suite of ASL interpretation services.” (Mar, Hollywood Reporter)
‘Still: A Michael J. Fox’ Movie: ‘Crip Camp’ Director Praises the Film. (Jan, IndieWire)
Marvel’s Echo Star Alaqua Cox Is Breaking Down Hollywood Barriers “Cox is making history with Echo, the first Marvel show centered on a deaf, Native American superhero.” (Jan, Teen Vogue)
Aria Mia Loberti Embraces ‘All the Light We Cannot See’. ‘The first-time leading lady reflects on the audition that changed her life, reveals her next role in another high-profile book adaptation, and resists being labeled a “blind actor.”’ (2023, Vanity Fair) See more on “an authentic blind heroine” from Newsweek.
Exploring the Imaginative Worlds of Blind Children in “The Unicorn in Snowpants Suddenly Ran Off”. “Philipp Schaeffer’s film is a glimpse at the overlap of play and perception.” (2023, The New Yorker)
One of Us: Tod Browning’s Freaks. A 1932 film, “the most infamous disability film of the first half of the twentieth century and in some ways still the most progressive.”:
“An early noir about a group of disabled carnival performers who enact swift and terrible vengeance upon the non-disabled grifters who prey upon one of their own and in so doing, offend them all, Freaks is still an equally amiable and nasty piece of work nearly a century after its debut.” (2023, Disability Visibility Project)
Watchlist: 7 Documentaries by Artists with Disabilities (2023, Sundance.org)
For Disabled Writers and Actors on Strike, Picket Line Access Is Key. (2023, Hollywood Reporter)
Ezra: Is Hollywood Getting Better at Autistic Representation? “Ezra continues in this new tradition, showing that when autistic people are creatively involved it strengthens not only representation, but the very quality of a film itself.” (2023, Thinking Person's Guide to Autism)
If Hollywood gets worse for workers, it will get worse for disabled workers first (2023, Los Angeles Times)
Behind the Lens Wheelchair Users Tell Their Stories in Acclaimed Documentaries (2023, New Mobility)
Why the 1932 Movie ‘Freaks’ Is a Touchstone for Disability Representation. “Though it has detractors, scholars and advocates have largely embraced this film for the way it shows people just living their lives while disabled.” (2023, New York Times)
Human Resources a character based on Alice Wong features in the second season. (2023, HITC)
For disabled writers, the WGA strike stakes couldn’t be higher. “This is true even on the picket lines themselves, where disabled writers have had to advocate for the accommodations they need to participate.” (2023)
‘It's Little People, You Got That?’: Danny Woodburn on Playing Mickey Abbott, the Most Explosive Character on ‘Seinfeld’. (2023, Cracked.com)
A year after ‘CODA’ made Oscars history, Deaf people are waiting for more inclusive stories. (2023, GBH News)
Creators Ask Hollywood to Hire Disabled Writers: “Disabled writers, directors, and actors are rarely hired to work on projects that feature disabled characters because studios and production companies have prioritized hiring disability consultants.” (2023, Variety)
'I Didn't See You There' Is a Disability Film Unlike Any Other - The Atlantic (2023, The Atlantic) Also on the Guardian.
Short Film “Take Me Home” Captures Empathy During Mourning. The short follows a cognitively disabled adult named Anna who lives with her aging mother in Midland, Florida. (2023, Respect Ability)
‘Sometimes you felt excluded’: How debut director Marlee Matlin righted past wrongs (2023, Los Angeles Times)
Oscar's Final Frontier: Movies Featuring Disabilities. “This year's race includes a handful of films on the topic; it's not enough but there is progress.” (2022, Variety)
‘Best Foot Forward’ Is a Story About, and by, People With Disabilities (2022, New York Times)
Captioned Video Accessibility. “Stranger Things” Captions, a Fascinating Case Study: “Captions are not the place to exercise creativity”. (2022, Meryl Evans)
Accurate Disability Representation In Mass Media: 8 Powerful Film and Television Performances By Actors With Disabilities. (2022, Kids Included Together)
DisLabeled, a short pilot episode, The Original Hackers. “Join comedian Brian McCarthy and other disabled designers, creators, and advocates who help him navigate his sudden vision loss with humor, innovation, and authenticity.” (2022, Bric TV)
Ahead of the Golden Globes Shining a Spotlight on Disability-Inclusive Nominations (2022, Respect Ability)
‘As We See It’ Is Not a Typical Portrayal of Autism starring three leads who are on the autism spectrum (2022, NYT)
‘CODA’ Script: Read Siân Heder’s Screenplay That Spotlights Deaf Culture (2022, Deadline)
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Media
I’m Co-Founding a Feminist Media Collective: Here’s Why Disability Will Be All Over It from the Start. Launching the Flytrap. (Nov, Disability Visibility Project)
A guide for reporting on how young disabled and chronically ill people use online communities. (Sep, J-Source)
How Young Disabled and Chronically Ill People Use Online Communities A Guide for Reporting. (Aug, Julia Métraux)
An Editor Who Makes Times Visuals Accessible to All “Jaime Tanner, The New York Times’s first accessibility visuals editor, wants to remove barriers to make sure readers with disabilities can engage with Times visual journalism.” (Mar, New York Times)
Reporting Guide to Investigating Disability Issues “Virtually every reporting beat has a disability angle.” (Jan, Global Investigative Journalism Network)
The Media, Disability, and Me ‘Working in media has always been an uphill battle for disabled writers, but an ever-shrinking industry gives “hard” a whole new meaning.’ (2023, The Nation)
Winners announced for Excellence in Disability Reporting awards. (2023, ASU Cronkite School)
Disabled Authors Deserve, and Demand, More “I believe in the power of storytelling and the perspectives, skills, and expertise of disabled people. In the future, I hope the publishing industry will finally reflect and welcome all of us.” (2023, Publshers Weekly)
Day Al-Mohamed on why media created by disabled artists is so important. (2023, Disability & Philanthropy Forum)
Ableism, inaccessibility prevail in field of journalism (2023, The Badger Herald)
People with disabilities aren't often seen in stock photos. The Consumer Product Safety Commission is changing that. (2023, NPR)
Guide to Investigating Disability Issues (2023, Global Investigative Journalism Network)
How public radio stations can serve deaf audiences. “Two public radio stations looking to improve the accessibility of their broadcasts for the deaf and hard of hearing have found new ways to provide live captioning of their programming.” (2022, Current)
Representation in media: Closing the inclusion gap for people with disabilities (2022, Nielsen)
Language, Please: a style guide for journalists that includes a section on Disabilities, Neurodiversity, and Chronic Illness (2022, Language, Please)
Disability Matters: A toolkit for newsrooms to better serve the disability community (2022, Reynolds Journalism Institute)
Short video campaign Spotlights Black Disabled Creatives (2022, Respect Ability)
How to Report With Care on Disability.
"Although I was happy to learn that Starbucks was trying to be more inclusive, to me, hiring people with disabilities isn’t a big news story — and neither is a corporation making one store accessible to deaf and hard-of-hearing customers. I felt that the real story was how some of those workers had master’s degrees, yet they had trouble finding jobs elsewhere because of their disability." (2022, NYT)
The Squeaky Wheel: a brilliant parody disability news site - think the Onion, but for us (2022)
Three disability questions every editor should ask (2021, RJI)
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Clothing and Fashion
Adaptive fashion’s inclusivity problem a critical exploration of current initiatives and their limitations. (Jun, Fashion Dive)
Will fashion ever be truly diverse? A new program at Parsons School of Design aims to close the gap for designers with disabilities (2023, Washington Post)
The Fashion Empire Built on Stolen Ideas “Mindy Scheier built her brand catering to disabled people, but there’s mounting evidence that she’s no ally.” (2023, New Republic)
I’m a Disabled Woman in My Maximalist Era. "I explored my personal style and used it as a vessel for reclaiming autonomy over my body and the symptoms I often cannot control." (2023, Refinery29)
Ramping Up Fashion’s Accessible Future “The fashion industry is designing adaptable clothing for disabled people, but is that enough to undo the industry’s ableism?” (2022, Yes!)
I Never Loved Fashion— Until I Went Blind. “On styling myself for a whole new life and the hope that came with it.” (2022, Cosmopolitan)
A Double Take on Adaptive Fashion at NYFW, From Open Style Lab. (2022, Vogue)
Clothing Hacks for Wheelchair Users - New Mobility (2022)
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Data and Research
Overview
When Designing Disability Survey Questions, Align Measurement To Purpose A Response To Landes et al:
“Focusing on functional difficulties in core domains makes it possible to produce an overall indicator but also provides information that is specific enough to be directly useful in removing key barriers that contribute to domain-specific difficulties. For example, people who cannot see face very different barriers than people who cannot hear; they require different accommodations or design elements.” (Oct, HealthAffairs)
Millions of people are missing from U.S. disability data:
“The first step in moving disability measurement forward is recognizing that defining disability solely by someone’s functioning is inadequate. While measures of functioning are important to understand the limitations certain disabled people experience and could identify disabled people who may benefit from specific programs or benefits, these surveys still fail to capture many disabled people. Using this data to determine national estimates of disability is akin to using data on languages used in the home to determine the national race and ethnicity estimates.” (Sep, Stat)
To Reduce Disability Bias in Technology, Start With Disability Data. “This paper identifies the various ways in which data sets may exclude, inaccurately count, or be non-representative of disabled people.” (Jul, Center for Democracy & Technology)
Over 70 Million U.S. Adults Reported Having a Disability:
“The latest data, from the 2022 Behavioral Risk Factor Surveillance System (BRFSS), reveal that more than 1 in 4—over 70 million—adults in the United States reported having a disability in 2022.” (Jul, CDC Newsroom)
Current Approaches to Measuring Disability Status in Federal Surveys May Limit Understanding of Economic and Health Disparities (Jun, Urban Institute)
Counting disability in the National Health Interview Survey and its consequence: Comparing the American Community Survey to the Washington Group disability measures:
“We find that when compared to their predecessor, the American Community Survey disability questions, the Washington Group questions accounted for less than half of disabled people, primarily counting disabled people with more than one disability status, but not counting many disabled people with only one disability status.” (Apr, Disability and Health Journal)
Next Steps on the American Community Survey Disability Questions in response to push-back on proposed adoption of the internationally-standard Washington-Group questions. (Feb, Census Bureau)
Working-Age Adults with Disabilities Living in the Community. Analysis of the American Community Survey. (Jan, KFF)
Charting Equality: Why Demographic Disability Data is Good for Everyone. A detailed exploration. (Jan, DREDF)
Annual Disability Statistics Collection gathering disability statistics from many federal agencies. (Center for Research On Disability)
The United States Census Bureau’s Decision to Switch to the Washington Group Questions a justification of reasons for the change. (2023, Center for Inclusive Policy)
How many in the U.S. are disabled? Heated discussions of proposed change to use of Washington Group Questions. (2023, Science)
Most Disability Professionals are Ableist. “I found the majority of disability professionals (77.2%) explicitly preferred nondisabled people, with 54.2% of disability professionals moderately or strongly preferring nondisabled people.” (2023, The Council on Quality and Leadership)
Four in Ten Adults with Disabilities Experienced Unfair Treatment in Health Care Settings, at Work, or When Applying for Public Benefits in 2022. (2023)
8 facts about Americans with disabilities based on government data and recent surveys. (2023, Pew Research Center)
Prevalence of disabilities among older Americans is much lower than a decade earlier (2023, News Medical Life Sciences)
Comparing Measures Of Functional Difficulty With Self-Identified Disability: Implications For Health Policy. Shows how six-question sets “performed especially poorly in capturing respondents with psychiatric disabilities or chronic health conditions.” (2022, Health Affairs)
A Need For Disability Data Justice “Public health data systems and infrastructure must be built to collect disability data and use this information to combat ableism and support equity and social justice.” (2022, HealthAffairs)
Disability Data Snapshot: Asian Americans and Pacific Islanders. (2022, U.S. Department of Labor Blog)
An Online Resource For Understanding Disability ‘By The Numbers’ (2022, Forbes)
More inclusive research practices needed to expand data on people with disabilities (2022, Healio)
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Research
Do you hear what I see? How blindness changes how you process the sound of movement (2023, The Conversation)
A symposium on Capitalism & Disability. (2022, LPE Project)
Open access to research can close gaps for people with disabilities (2022, Stat News)
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Digital Accessibility and Technology
Overview
Why America is obsessed with subtitles A survey of 1,260 people shows 50% use subtitles most of the time. (Aug, Preply)
Unlocking the Virtual Front Door An Examination of Federal Technology’s Accessibility for People with Disabilities, Older Adults and Veterans (Link to pdf, 2022, Senate Special Committee on Aging)
Anticipate and Adjust: Cultivating Access in Human-Centered Methods. (Summary of a research paper on approaches to accessibility in human-computer interaction research communities., 2022, Kelly Mack)
Fulfilling our commitment to accessibility and inclusion reports from a recent "digital forum" (2022, Microsoft Industry Blogs)
Why Americans With Disabilities Use The Internet Less Frequently (2022, BOIA)
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Artificial Intelligence
Inside Sign Speak’s Mission To Make Accessibility Out Of American Sign Language And Artificial Intelligence. (Sep, Forbes)
A disability advocate preserves his voice with iPhone For physician and disability advocate Tristram Ingham, Apple’s new speech accessibility features provide reassurance amid an uncertain future (2023, Apple)
UnitedHealth uses AI model with 90% error rate to deny care, lawsuit alleges “For the largest health insurer in the US, AI's error rate is like a feature, not a bug.” (2023, Ars Technica)
Personal Voice Should be a Game Changer for Me. It's Not. “If you know you are at risk of losing your speech, chances are you - like Nick - may not be able to read and recite sentences in these optimal conditions.” (2023, Reach Every Voice)
Not magic: Opaque AI tool may flag parents with disabilities. “The couple was stunned when child welfare officials showed up, told them they were negligent and took away their daughter.” (2023, AP News)
Denied by AI: How Medicare Advantage plans use algorithms to cut off care for seniors in need. (2023, Stat)
How School Tech Treats Students With Disabilities Like Criminals. “The Americans with Disabilities Act (ADA) needs an update to protect vulnerable kids’ rights in the age of artificial intelligence (AI) and nonstop surveillance.” (2022, The Daily Beast)
The Biden Administration warns that Hiring algorithms, and artificial intelligence risk violating Americans with Disabilities Act (2022, NBC News) See the detailed guidance, from the Equal Employment Opportunity Commission and a summary from ADA.gov. Also on Forbes and Bloomberg Law.
Ableism And Disability Discrimination In New Surveillance Technologies. How new surveillance technologies in education, policing, health care, and the workplace disproportionately harm disabled people (2022, CDT)
How AI is being used to improve disability employment (2022, Microsoft)
In Our Tech Reckoning, People with Disabilities are Demanding a Reckoning of their Own (2022, Tech Policy Press)
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Online Accessibility
Google Accused of Collecting California Disabled Drivers’ Data: “Google LLC was hit with a proposed class action alleging the tech giant collected and monetized personal information about users’ disabilities via the California Department of Motor Vehicles website.” (May, Bloomberg Law)
How Level Access Acquiring UserWay Transforms The Web Accessibility Market Tim Springer, CEO of Level Access explains why they acquired a firm specialising in web accessibility overlays, a controversial way to provide online accessibility:
“When it comes to overlays, within disability and accessibility, there’s always been a very vocal minority that says, ‘Look, these things are bad.’ They want to view the world as black and white but the reality is that the world is a bunch of shades of grey and there is an appropriate place for artificial intelligence and automation in digital accessibility.” (Apr, Forbes)
Blind Leader Wins $2 Million Settlement Over Inaccessible California Parks Website. (2023, Tre Legal)
OMB Releases Digital Accessibility Guidance to Ensure All Americans Have Ability to Access Critical Government Resources. (2023, The White House)
What Are the Top Barriers to Digital Inclusion in 2023? “79% of website users and 78% of app users said they feel frustrated because they don’t have as much independence as a sighted person when completing digital tasks.” (2023, American Foundation for the Blind)
How Accessible are Dating Apps? “these services offer little to no recourse for individuals who may have visual impairments.” (2022, Accessibility.com)
For people with disabilities, AI can only go so far to make the web more accessible (2022, Protocol)
LGBTQ+ artists and those with disabilities see Etsy as a lifeline “Many sellers who live at the intersection of multiple marginalized identities were already struggling before the e-commerce site’s latest fee increase.” (2022, 19th News)
How to Create Accessible & Inclusive Digital Platforms for Those With Mental Health Disabilities (2022)
App & Web Accessibility Lawsuits Break Records (2021, UsableNet)
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Technology
“I Know What the Apple Vision Pro Is For” The headset is already changing disabled users’ lives, with “unprecedented control” over their visual environments. (Jun, Intelligencer)
Javier in Frame Google Pixel Super Bowl Commercial 2024 of their guided frame feature. (Feb, Google)
Who’s in Charge? Information Technology and Disability Justice in the United States. 'Can disabled people be called “users” or said to “have access” to technology if they are regularly denied agency over how they use technology?'
"Disabled people in the United States are surrounded, defined, and, to some degree, controlled by data, technology, and information—from medical technology and therapies to educational systems to social and government services and policies that shape their lives. The extent to which they can access and use technologies to accomplish their own goals is less clear. This review discusses access to data and technology for people with disabilities, focusing on agency and digital transinstitutionalization—the extension of institutional frameworks, such as surveillance and control, from state hospitals into community settings via data-driven technologies." (2022, Just Tech)
Navigational Apps for the Blind Could Have a Broader Appeal (2021, NYT)
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Social Media
Meet the Wheelchair User Making Google Maps More Accessible. (Jun, New Mobility)
People with disabilities have built a community on TikTok. They fear its loss if the app is banned. (2023, Yahoo! News)
Senator Markey Demands Musk Reinstate Twitter’s Accessibility Team, Online Features for Users with Disabilities. (2023, Ed Markey)
Twitter’s meltdown isn’t a punchline for disabled communities “Disabled users fear the loss of Twitter-based networks they’ve spent years building for communication, commerce, and connection” (2023, Prism)
Content creation can be a lifeline for disabled creators —but it can also put their mental and physical health at risk. (2022, Passionfruit)
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Disaster Risk Reduction and Crisis Response
Disaster Justice A guidebook for people of color with disabilities. (Feb, Seeded Ground)
Disabled first responders are shifting priorities in disaster relief “Disability inclusion in emergency preparedness and response doesn’t just mean supporting disabled victims of extreme weather—it also means including disabled communities in disaster relief strategy” (2023, Prism)
What People With Disabilities Know About Surviving Climate Disasters Those with disabilities have long been ignored in emergency planning, despite the higher risks they face. Extreme weather is making this gap more deadly. “We’re not given survival mechanisms. So of course, we don’t survive.” (2023, Bloomberg)
Disability and disaster: Federal lawsuit charging the city of San Antonio with discrimination by “by denying equitable opportunities, outcomes, or even consideration in disaster and emergency planning, response, and recovery programs” (2023, Deceleration)
Disabled people face worse outcomes after natural disasters. “March data from the U.S. Census Bureau's Household Pulse Survey shows that, of people who had been displaced in the last year by a natural disaster, people who have a lot of difficulty walking or climbing stairs, like Jaimes, are more than three times more likely than people with no difficulty walking to experience unsanitary conditions one month after the disaster.” (2023, Earthbeat)
Majority of disabled people never go home after disasters. “Census Bureau data released Thursday shows that people with disabilities are far more likely than anyone else to face major hardships including displacement from their homes due to a major disaster.” (2023, E&E News)
California’s power outages are a life-and-death issue. The impacts of storms for people with disabilities, powerfully illustrated by Alice Wong's own experience and potential harm she would face during a power outage. (2023, High Country News)
How California’s emergency plans fail disabled communities (2023, High Country News)
New Interactive Maps Help Inform Disability-Inclusive Disaster Planning (2022, Mathematica)
Many of Hurricane Ian’s Victims Were Older Adults Who Drowned. (2022, New York Times)
Texans with Disabilities During Winter Storm Uri. A qualitative study that shows:
“the hardships people with a wide range of disabilities experienced during this cascading disaster, including the inability to power life-giving medical equipment and the intensification of pain and health problems due to the loss of heat and water. Findings also show that participants were not passive victims in the face of these life-threatening challenges; disabled people and parents of those with severe disabilities went to extraordinary lengths to survive and to help others survive the disaster, including providing and receiving critical forms of care from family and community members during the storm.” (2022, Natural Hazards Center)
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Economics and Social Protection
Overview
Equity for Whom? An Introduction to Private Equity’s Impacts on the Disability Community:
“Private equity poses a serious and urgent threat to people with disabilities, particularly those with multiple marginalized identities. People who rely on HCBS, autism services, accessible transportation, fertility assistance, affordable housing, or power wheelchair/scooter repairs, and people who are incarcerated in prison, jail, or living in institutions such as a nursing home, residential treatment facility, or intermediate care facility, have likely been deeply impacted by private equity over the past decade. For this reason, it’s imperative that the disability community oppose this profiteering and exploitation, and resist private equity’s encroachment.” (Oct, DREDF)
People with blindness and low vision are squeezed by high costs of living:
“We calculated that people with blindness or low vision spend, on average, 27% of their household income on expenses related to their disability – about $7,000 per year. [...] The people who took this survey and were earning less than $25,000 per year said they spent about 40% of their income on costs related to their disability, on average, compared with 16% for those with higher incomes.” (Oct, The Conversation)
The Financial Health of People with Disabilities a report on key obstacles and opportunities. “Just 10% of working-age people with disabilities are Financially Healthy, compared with 30% of working-age people without disabilities.” (2023, Financial Health Network)
How to Embed a Disability Economic Justice Policy Framework in Domestic Policy Making. (2023, The Century Foundation)
Voices of Disability Economic Justice a series led by disabled writers. “As our collaborative members work together to bring disability into the economic debate, people with disabilities who have experienced our broken systems firsthand are uniquely positioned to articulate what better public policy would mean for their lives.” (2022, TCF)
New Rule Would Expand Student Debt Relief for Disabled Borrowers (2022, TCF)
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Social Protection
This disabled woman built a career. SSI once helped but now penalizes her. (Oct, NPR)
The Connection Between Social Security Disability Benefits and Health Coverage Through Medicaid and Medicare. (Oct, KFF)
Health Disparities in the Medical Record and Disability Determinations: Proceedings of a Workshop:
“When people with disabilities are denied the care they need, it is difficult for them to get the information they need into their medical record so they can successfully go through the disability determination process.” (Aug, National Academies Press)
They rely on Social Security. But the agency took their much-needed benefits away because of a $2,000 asset limit. (Jun, NPR)
Couples say they can't get married because of the outdated rules of Social Security's Supplemental Security Income program. (Jun, NPR)
Social Security to Simplify Disability Evaluation Process: “the agency is proud to announce changes that will reduce administrative burdens for applicants and help more people with disabilities receive government benefits and services if they are eligible”. (Jun, Social Security Matters)
Social Security ditches obsolete jobs data used to deny disability claims:
“For decades, the Social Security Administration has denied thousands of people disability benefits by claiming they could find jobs that have all but vanished from the U.S. economy — such occupations as nut sorter, pneumatic tube operator and microfilm processor.” (Jun, Washington Post)
The safety net program trapping people in poverty article exploring Supplemental Security Income. “Imagine you have to stop working for whatever reason, but legally you’ve only been allowed to build up $2,000 in savings.” (Apr, Vox)
States offer services for disabled kids, then make their families wait 10 years for them. “Across the U.S., hundreds of thousands of children, adolescents and young adults with physical or intellectual disabilities are waiting for state-covered services.” (Feb, PBS NewsHour)
Why Social Security Disability Claims Are Taking So Long It takes the Social Security Administration 228 to process an initial application, double what it was before the covid pandemic. (Jan, AARP)
Toward economic security: 2023 progress report on the Impact of Income and Asset Limits on People with Disabilities:
“As asset and income limits haven’t been scaled to inflation or revised even a penny in 34 years, it means people with disabilities have been forced, by federal policy, to be poorer and poorer, year over year, to qualify for critical supports and services,” said NCD Council member Theo Braddy. “Federal disability policies should be about helping people live independently, get to work, and get out of poverty. The current asset and income limits ensure the opposite.” (2023, National Council on Disability)
Review of Todd Carmody's book Work Requirements on Race, Disability, and the Print Culture of Social Welfare. “For Carmody, there is a direct line that connects the victimization of those at the periphery in early America with the current ideological divide that separates morally superior workers from the lazy, no-good, physically and mentally ill, criminal, visible minorities of American society.” (2023, H-Disability)
New bill aims to help low-income people with disabilities save money “The legislation would create a federal dollar-for-dollar match of up to $2,000 for new and existing ABLE accounts for individuals who earn $28,000 or less per year.” (2023, CNBC)
The Application Process for Disability Benefits Shuts Out People in Need “Most who apply for disability benefits are initially turned down. In fact, as per the SSA, only about a third on average get approved on their first try applying for SSDI, and the percentage of those who are initially approved has decreased each year.” (2023, The Century Foundation)
Booting 18-Year-Olds From Disability Rolls “About 80,000 kids on SSI turn 18 each year, and, like Gabriel, about half will lose benefits.” And it has has lifelong consequences: “Youth who lost benefits at 18 were twice as likely to be charged with a crime as they were to hold a job.” (2023, Mother Jones)
Social Security may be failing well over a million people with disabilities – and COVID-19 is making the problem worse.
“The data showed that the share of people with substantial work-limiting disabilities who received Disability Insurance, Supplemental Security Income benefits or both rose from 32% in 1998 to 47% in 2016, which was the last year the data was available. This is just a little above the average among 27 high-income countries I compared the data with.” (2023, The Conversation)
A Framework for Evaluating the Adequacy of Disability Benefit Programs and its Application to the U.S. Social Security Disability Programs. “The results indicate that more than 50 percent of older adults of working-age with work-disabilities in the U.S. do not receive SSD benefits, though rates of benefit receipt are higher than the average across other high-income countries” (2023, Journal of Social Policy)
A Framework for Evaluating the Adequacy of Disability Benefit Programs and its Application to the U.S. Social Security Disability Programs. “The results indicate that more than 50 percent of older adults of working-age with work-disabilities in the U.S. do not receive SSD benefits, though rates of benefit receipt are higher than the average across other high-income countries” (2023, Journal of Social Policy)
Social Security disability benefit offices reach breaking point with huge claim backlogs. “State operations that review claims face massive backlogs, leaving disabled Americans waiting months and even years for judgments” (2022, Washington Post)
How Dehumanizing Administrative Burdens Harm Disabled People: “All of the systems are set up to really dehumanize disabled people and not to help us.” (2022, Center for American Progress)
Social Security uses obsolete job titles to deny benefits to disabled applicants. (2022, Washington Post)
‘Impending Intergenerational Crisis’: Americans With Disabilities Lack Long-Term Care Plans. (2022, Kaiser Health News)
A disability program promised to lift people from poverty. Instead, it left many homeless. (2022, Salon)
‘People will die waiting’. America’s system for the disabled is nearing collapse: “Providers for intellectually and developmentally disabled struggle to recruit and retain staff amid soaring inflation, pandemic burnout.” (2022, Politico)
Inside the Kafkaesque Process for Determining Who Gets Federal Disability Benefits. (2022, Mother Jones)
The Impacts of Disability Benefits on Employment and Crime Discontinuing benefits for children with disabilities as they become adults “increased criminal charges substantially“. (2022, NBER)
Ending the Two-Tier System of Disability Benefits. If you're not already familiar with how Supplemental Security Income (SSI) works, this article has the gruesome lowdown: benefits below the federal poverty line, and you are ineligible to receive them if you don't have other earnings or assets over $2000. (2022, Brown Political Review) See more on how policy punishes disabled people who save more than $2,000 from Full Stack Economics.
Data breach may have exposed personal information of Oklahomans on disability aid list (2022, The Oklahoman)
Millions of disabled Americans could lose federal benefits if they get married (2022, NPR)
Tax authorities raise limit allowed benefit recipients in saving accounts (2022, Disability Scoop)
One of the awful features of some disability-related benefits is a limit of the assets that a recipient can have. California just raised the assets limits for medicare from 2000 USD to 130,000 USD. (link to pdf, 2021, State of California)
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Education and Childhood
Overview
When disabled kids are left behind in school shooting drills “School emergency planning often fails to account for disabilities, with traumatic consequences for children and their parents.” (Nov, The Washington Post)
More kids than ever need special education , but burnout has caused a teacher shortage. “Going into the current school year, more than half of U.S. public schools anticipate being short-staffed in special education” (Oct, The Conversation)
Beyond Inclusion: How to Raise Anti-Ableist Kids, a book (Jul, IPG)
Creating a Welcoming Environment for Linguistically Diverse Families of Students in Special Education. (Mar, KQED)
Our Nation’s Public Schools are Failing Neurodivergent Learners.
“Setting neurodivergent students up to succeed begins by accepting them as they are, and not comparing them to the student we may think they should be. The picture of what “good learning” looks like in classrooms has a long legacy of upholding ableist, neuronormative patterns of behavior. Sitting in a chair, still, with both feet down on the floor, looking forward, and not fidgeting, does not equate to how much a student is learning. Neither does finishing all the problems in a designated time frame or being able to fit your thinking into a little box at the bottom of a worksheet or exam.” (Feb, EdSurge)
Few Interpreters, a Byzantine System, and a Child in Need of Learning —Welcome to New York. “Navigating the city’s services for students with disabilities is hard. Even more so for non-English-speaking parents.” (2023, Mother Jones)
America Promises Equality for Disabled Students. It’s Failing. A project exploring “how our country’s education system underserves them—and the fight to change that.”:
‘It has been nearly 50 years since the Individuals With Disabilities Education Act (IDEA) passed, guaranteeing a “free appropriate public education” to disabled students. But our system is not living up to this promise. More than one-third of these students don’t graduate high school. The Department of Education’s Office for Civil Rights has more than 2,500 open investigations into complaints from parents of children with disabilities; some have been unresolved for over a decade.’ (2023, Mother Jones)
No Power but Deaf Power: Revitalizing Deaf Education Systems via Anarchism (2023, Social Inclusion)
How School Shooting Responses Leave Out Disabled Students. “Many schools have policies that leave behind vulnerable students and staff in the event of mass shootings, fires or other disasters.” (2023, Huffpost)
Oklahoma votes down ban of corporal punishment on disabled children. (2023, Washington Post)
Supreme Court unanimously rules for deaf student in education case. (2023, PBS)
Disability rights advocates call on Texas Legislature to better protect students from restraints. “Jeanna TenBrink said three years ago, when her daughter Leah was in middle school, she started coming home with unexplained bruises and getting upset when it was time to go to school. But because Leah is autistic and mostly nonverbal, TenBrink didn’t know why her daughter was upset until she managed to get access to camera footage.” (2023, Texas Public Radio)
How Educators Secretly Remove Students With Disabilities From School. “The removals — which can include repeated dismissals in the middle of the day or shortening students’ education to a few hours a week — are often in violation of federal civil rights protections for those with disabilities.” (2023, New York Times)
5 Helpful Resources for Teaching Students Disability History (2023, We Are Teachers)
The School That Calls the Police on Students Every Other Day “An Illinois school for students with disabilities has routinely used the police to handle discipline, resulting in the highest arrest rate of any district in the country. In one recent year, half of Garrison School students were arrested.” (2023)
New Guidance Helps Schools Support Students with Disabilities and Avoid Discriminatory Use of Discipline (2022, Department of Education)
Education Department Finds that Most States Repeatedly Fail To Meet Special Ed Responsibilities (2022, Disability Scoop)
Surveillance Tech Is Wrongly Accusing Disabled Students of Cheating on Tests (2022, Truthout)
Reflections on Disabled Students & Active Shooter Preparedness “How can we use anti-ableism in all aspects of gun violence prevention?” (2022, Crip News)
I Gave My Child a Smartphone and It's Been the Best Thing for Her. More screen time has been beneficial for my disabled 10-year-old daughter. Here are five rules that make it all work for us. (2022, Wired)
Longest Sit-In in UCLA History Ends with Massive Victory for Students: "A 16-day sit-in by a coalition of students striking for hybrid access and equity for marginalized students got results. " (2022, Knock LA)
Cost of Heaven a moving exploration through graphics and text on the closure of a deaf school and importance of its heritage. "The cultural strength of the Deaf schools enable children to learn without the constant pressure to 'overcome' disability." (text transcript also available, 2022, Adrean Clark)
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Higher Education
Inaccessible Access Rethinking Disability Inclusion in Academic Knowledge Creation. (Nov, Rutgers University Press)
Crip Spacetime Access, Failure, and Accountability in Academic Life, a book by Margaret Price. (Apr, Duke University Press) See a New Books Network interview, with transcript.
Navigating environmental academia in a disabled body: an embodied autoethnography of ableism and advocacy. (Apr, Disability & Society)
Department of Education Could Improve Information on Accommodations for Students with Disabilities:
“Students with disabilities face several challenges while transitioning to and attending college, according to college disability services staff and students GAO spoke with. For example, some students are unaware of or unprepared for the self-advocacy necessary to request accommodations without help from their parents, who can play a pivotal role in obtaining academic supports in high school. In addition, some students experience reluctance from faculty to provide accommodations. To help mitigate these challenges, college staff reported holding orientation sessions for students on how to request accommodations and training faculty on how to make their courses accessible, among other steps.” (Apr, US Government Accountability Office)
Experiences of faculty and scientists with disabilities at academic institutions
“Faculty with disabilities encounter systematic barriers at academic institutions, and lack of acknowledgement and research on these experiences has held back institutional and policy changes. To reduce disparities for disabled faculty, academic leadership must allocate resources to address ableism, create more inclusive environments, and raise standards beyond ADA compliance.” (Feb, MedRxiv)
Work Will Not Save Us: An Asian American Crip Manifesto (2023, Disability Studies Quarterly) See discussion on the Debrief.
UCLA has a new disability studies major (2023, Los Angeles Times)
STEM PhDs with disabilities are underpaid and underrepresented in U.S. academia, earning “$14,360 less per year in academia than those without disabilities.” (2023, HUB)
At 20, Berkeley's Disability Studies looks ahead “Launched in 2003, Disability Studies, though formally housed in the Division of Undergraduate Studies, is now present in departments across Berkeley, from art practice to linguistics to sociology.” (2023, Berkeley News)
Uncharted: stories about people with disabilities in STEM fields. (2023, The Story Collider)
The Problem With Disabling How colleges—and the law—are impairing student education and resilience through too many accommodations. [This article is shared for information, not because I agree with it.] (2023, Discourse)
Being Black and Disabled in University “Pursuing an education at the intersection of ableism and racism, Black male students with disabilities develop strategies to silence negative cultural narratives.” (2023, JSTOR Daily)
Creating Our Own Lives Young adults with intellectual disability tell the story of their own experience of higher education. (2023, University of Minnesota Press)
College students with disabilities deserve accessible spaces “Student journalists at the University of Maryland spent months scrutinizing their campus and talking to people with disabilities. More college newspapers should.” (2022, Washington Post)
Students push for Persons with Disabilities Cultural Center (2022, Yale News)
‘It’s Backdoor Accessibility’: Disabled Students’ Navigation of University Campus:
“Introducing the concept of ‘backdoor accessibility,’ this paper examines exclusionary practices and systemic ableism to propose that disabled students are routinely offered a lesser quality service that is argued to be ‘better than nothing.’ In order to navigate these barriers, many students reported the additional expenditure of time, resources and energy.” (2022)
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Employment, Business and Work
Disability Status and Work Employment Trends in the US, 2024, based on LinkedIn profiles:
“Overall, while disparities in several employment outcomes between
people with and without disabilities persist, the gaps are shrinking
with younger generations.” (Link to pdf, Oct, LinkedIn)
Work from Home and Disability Employment. “A back of the envelope calculation reveals that the post pandemic increase in working from home explains 80% of the rise in full-time employment.” (Sep, NBER)
Disabled Union Members Are Strengthening the Labor Movement “Disabled workers are getting louder and more effective as they push their unions to be more accessible and inclusive. All workers are benefiting.” (Sep, The Nation)
The Union Advantage for Workers with Disabilities: Higher Pay, More Benefits (Aug, CEPR)
Many disabled workers earn subminimum wages.
“Tens of thousands of disabled people in the United States are paid less than the federal minimum wage — with some workers making as little as 25 cents per hour.” (Aug, Washington Post)
Disability and Employment in New York City:
“we find that New Yorkers with disabilities have a significantly lower employment rate than their non-disabled counterparts, and that this rate varies widely by type of disability. Disaggregating by race and gender, the disability employment gap is especially pronounced for Black, Hispanic, and male workers. We also see that workers with disabilities are disproportionately represented in service occupations as well as sales, office, and administrative support roles, while underrepresented in management, business, and financial occupations.” (Jul, New York City Comptroller)
Disability Nonprofit to Pay $1 Million to Settle ADA Claims “A federal contractor that connects people with disabilities to jobs has agreed to pay more than $1 million to resolve an EEOC lawsuit claiming discrimination against deaf and hard-of-hearing workers.” (Jul, Bloomberg Law)
The 10th annual Disability Equality Index shows disability inclusion progress, but there are gaps in reporting:
“Disability:IN consistently suggests that companies are making progress towards disability inclusion, but the reporting gaps leave room for questions, and disabled talent still face barriers to success.” (Jul, HR Brew)
In Georgia, a Rare Bipartisan Push for Disability Rights “The Peach State might be the next to end subminimum wages for disabled workers.” (Apr, Mother Jones)
Disability, Immigration, and Postpandemic Labor Supply “We show that the increase in the disabled labor force largely reflects a change in self-reported disability status among those already in the labor force rather than an actual increase in labor supply.” (Mar, Federal Reserve Bank of Cleveland)
Eliminating Barriers to Employment for Disabled Women from playbook for the advancement of women in the economy. (Mar, Center for American Progress)
The Disability Equality Index: A Mirage of Hope a series exploring a measurement that supposedly captures employers' progress on disability. (Mar, The Catalyst)
Kansas Plans to Phase Out Subminimum Wage for Disabled People (Feb, Mother Jones)
Pennies on the Dollar: The Use of Subminimum Wage for Disabled Workers across the United States: “17 states have taken action to either eliminate the use of subminimum wage or are actively phasing it out.” (Feb, New America)
Disabled employment surged in COVID 2024 less certain. The disabled workforce has “climbed by more than 30% since just before the pandemic began, eclipsing broader workforce growth.” (Feb, Reuters)
Hundreds of Companies Legally Pay Disabled Workers Below Minimum Wage.
“What began as a provision of President Roosevelt’s 1938 Fair Labor Standards Act, which was meant to improve employment for disabled people — employment was seen then, same as now, as a key part of someone’s American-ness — came at a time when institutionalization was the only path for a lot of marginalized folks. But it has apparently morphed into something else entirely: a business-branded excuse to dehumanize disabled workers in yet another way.” (Jan, Teen Vogue)
Disability activists keep pretending severe autism doesn’t exist a mother argues in defense of programs that pay a subminimum wage. (2023, Washington Post)
Disability Inclusion Imperative a report showing how:
“the business case for hiring persons with disabilities has become even stronger. Specifically, companies that have led on key disability inclusion criteria over that time saw 1.6 times more revenue, 2.6 times more net income and 2 times more economic profit than other companies in the Disability Equality Index.” (2023, Accenture and Disability:IN)
A Key Tool for Disability Employment and Neuroinclusion. The key to disability employment is flexibility. (2023, Psychology Today)
Nearly half of women with disabilities report experiencing sexual harassment or assault at work 48% of women with disabilities reported this compared to 32% of women without disabilities. (2023, the 19th)
Department of Labour Invests Millions Into Helping Employ People with Disabilities, “making available more than $69 million in grants to states to develop innovative strategies to help marginalized youth and young adults with disabilities join the workforce.” (2023, SHRM)
Disability Status and Work Linkedin uses its information to explore employment and leadership trends.
“Members reporting disabilities exhibit significant differences in industry representation when compared to those without disabilities. Specifically, workers with disabilities are 1.5 times more likely to work in Consumer Services, 1.4 times as likely to work in Government Administration, and 1.3 times more likely to work in Education, in contrast to their counterparts without disabilities.” (2023, Linkedin)
How the Gig Economy impacts People with Disabilities Participating in the gig economy is a mixed bag and not even always available to people with disabilities (2023, Access * Ability)
Noise, light in stores can be harsh. Some businesses are offering special hours and events for people with sensory processing disorder that makes sights, sounds and smells feel overwhelming (2023, Washington Post)
Amazon Got a Perfect Score on Disability Inclusion—From a Group It Helps Fund – Mother Jones —From a Group It Helps Fund:
“Disability:IN released its annual “Best Places to Work” Disability Equality Index, which grades how well companies prioritize and accommodate disabled employees. One company that earned a perfect score: Amazon, which has been accused of disability discrimination by state agencies and current and former staff.” (2023, Mother Jones)
2023 Disability Equality Index Report (2023, Disability:IN)
‘An inherent indignity’: the fight to get workers with disability a living wage. “Advocates are highlighting a system of state tax credits across the US that allow employers to pay employees as low as $3 an hour” (2023, the Guardian)
Are Advocates for Corporate Disability Inclusion Anti-Worker? (2023, American Prospect)
Disability Justice—in the Workplace (and Beyond) (2023, NPQ)
My Daughter Expects to Work. Will She Make Only $3.35 an Hour? “Changing expectations, especially those informed by decades of social and economic discrimination, takes time, and ending 14(c) certificates [that permit employers to pay disabled people less than the minimum wage] is just the beginning.” (2023, New York Times)
Hearing Disabilities in the Workplace and the Americans with Disabilities Act. (2023, U.S. Equal Employment Opportunity Commission)
Disability disparities in STEM: Gaps in salaries and representation for doctorate recipients with disabilities. “Doctorate recipients working in STEM with early onset disabilities (identified <25 years of age) earned $10,580 less per year than non-disabled workers.” (2022, MedRxiv)
What the Disability Community Told Us About Sheltered Workshops in Missouri. “The respondents told me that they would be devastated if their sheltered workshops were forced to shut down. Some family members even bypassed our outreach questions and instead sent in letters expressing opposition to any changes to the federal subminimum wage law or requesting that sheltered workshops remain open in the state.” (2022, ProPublica)
For Disabled Workers, a Tight Labor Market Opens New Doors (2022, New York Times)
Human Resources software aims to make disclosing disability easier. Disclo is software for employers to “collect, verify, and manage health disclosures and employee accommodation requests”. (2022, Forbes)
Federal agencies recommend strategies to expand disability employment in state and local government. (2022, Disability Scoop)
New edited collection on Neurodiversity in the Workplace: Interests, Issues and Opportunities. “This collection provides an opportunity to look at how discrimination can occur across the employment process and what can be done to minimize the exclusionary practices that prevent neurodiverse individuals from getting into the workplace, advancing, thriving, and contributing as each of us desires to do.” The chapter on Shaping Organizational Climates to Develop and Leverage Workforce Neurodiversity is open access. (2022, Routledge)
Disability Representation on Boards Is Up, Yet Inclusion Lags. (2022, Bloomberg Law)
Making the ‘Business Case for Diversity’ Can Backfire with Underrepresented Groups by leading to a lower sense of belonging. (2022, Yale Insights)
Including Disability in Diversity, Equity & Inclusion Priorities: Building A Maturity Model (2022, AskEARN)
7 Resources for People With Disabilities to Break Into Software Engineering Careers (2022, ContainIQ)
Twenty-Two Cents an Hour a book by Doug Crandell on Disability Rights and the Fight to End Subminimum Wages (2022, Cornell University Press)
How Managers Can Support Employees With Long COVID (2022, MIT Sloan)
Unemployment Soars for New Yorkers With Disabilities as Challenges Outweigh New Opportunities. ”New technologies and an explosion of remote-work jobs hasn’t stopped the unemployment rate for New Yorkers with disabilities from jumping 10 percentage points since 2019, while funding for support groups has been slashed.” (2022, The City)
Brand activism floods 'disability awareness' holidays. But too often, it ends there as well. (2022, Business Insider)
How Employees With Disabilities Are Influencing Workplace Trends In 2022 (2022, Forbes)
The Rise In Telework During The Pandemic, An Opportunity For Accessibility And Inclusion (2022, Forbes)
Detailed report on how Economic Justice Is Disability Justice “Achieving the as-yet unrealized promises of the ADA—and finally breaking the persistent link between disability and poverty in the United States—will require applying a disability lens across the nation’s economic policymaking.” (2022, TCF) See also 7 Facts About the Economic Crisis Facing People with Disabilities in the United States.
Supporting Employees with Long COVID: A Guide for Employers (2022, EARN and JAN)
Adobe Releases Results Of Study Looking At Recruiting, Retaining, And Supporting Disabled Workers See also the adobe study results. (2021, Forbes)
U.S. Department of Labor eliminates exemption for federal contractors with disabilities to be paid less than the minimum wage (2021, Council of State Governments)
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Gender Equality and Women with Disabilities
Book review of V. Jo Hsu's Constellating home: trans and queer Asian American rhetorics which “enfolds transnational and Black feminism, critical race, disability, queer and trans studies into its’ theoretical framework.” (2023, Disability & Society)
A federal appeals court finds that gender dysphoria is protected under the Americans with Disabilities Act (ADA). (2022, CT Mirror)
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Health
Overview
Genetic Discrimination Is Coming for Us All “Insurers are refusing to cover Americans whose DNA reveals health risks. It’s perfectly legal.” (Nov, The Atlantic)
Johns Hopkins health system to pay disabled patients “The health system will pay $150,000 to the patients who were allegedly denied support people during their hospital stays.” (Sep, Washington Post)
Disability Mortality Disparity: Risk Of Mortality For Disabled Adults Nearly Twice That For Nondisabled Adults, 2008–19 (Aug, HealthAffairs)
Mask Bans Insult Disabled People, Endanger Our Health, and Threaten Our Ability to Protest. (Jul, Teen Vogue)
House Of Representatives Passes Bill To Ban Use Of QALYs In Federally Funded Healthcare Programs. “It’s unconscionable that a healthcare bureaucracy would so callously determine that someone’s life is worth less.” (Feb, Forbes)
Aspiring to Disability Consciousness in Health Professions Training “Future clinicians must recognize disability as an aspect of diversity, express respect for disabled patients, and demonstrate flexibility about how to care for disabled patients’ needs. These skills are currently undervalued in medical training, specifically. ” (Jan, AMA Journal of Ethics)
U.S. medical schools aren’t teaching future doctors about 7.4 million of their patients. (2023, Stat)
Why This Doctor Is Fighting for Her Patients’ Pain to Be Taken More Seriously “After her cancer diagnosis, Diana Cejas better understood ableism in the medical field. Now, she's fighting against it.” (2023, Teen Vogue)
National Institutes of Health designates people with disabilities as a population with health disparities “Designation, new research program and update to NIH mission are actions to ensure inclusion of people with disabilities.” (2023, National Institutes Of Health) See comment in the Washington Post.
Inside the Private Group Where Parents Give Ivermectin to Kids With Autism “experts have repeatedly said is designed only for large animals and is so concentrated that it can be toxic when ingested by humans.” (2023, Vice)
People With Disabilities Deserve Better Health Care. We All Do. (2023, Undark)
Why addiction should be classified as a disability. “How Treating Addiction as a Disability Could Transform Treatment” (2023, Slate)
The disability rights fight intersecting the drug pricing debate. Discussing a bill to ban use of Quality-Adjusted Life Years. (2023, Axios Pro)
National Institutes of Health advances landmark recommendations on disability inclusion and anti-ableism. (2023, Statnews)
Sickle Cell Cure Brings Mix of Anxiety and Hope (2023, New York Times)
Blind people still get medical bills they can't read. (2022, NPR)
Revenge of the gaslit patients: Now, as scientists, they’re tackling Ehlers-Danlos syndromes (2022, Stat News)
Doctors Are Failing Patients With Disabilities “Decades after the ADA passed, medical care still isn’t accessible.” (2022, The Atlantic)
Visually impaired people less likely to access health care. A study from the CDC shows that 50% of those with vision impairment reported fair or poor general health compared with 17% without vision problems. (2022, Washington Post)
‘I Am Not The Doctor For You’: important research on Physicians’ Attitudes About Caring For People With Disabilities (2022, Health Affairs) Coverage in New York Times.
Disability & Health In 10 Exhibits: Themes from Health Affairs’ October 2022 Issue. (2022, Health Affairs)
Mistreatment of physicians with disabilities is widespread, study finds. (2022, Medical Economics)
At last, medical guidelines address care for adults with Down syndrome. (2022, Washington Post)
Key groups overlooked in bias training for doctors (2022, The Boston Globe)
The autistic community is having a reckoning with Applied Behaviour Analysis (ABA) therapy. Includes interesting reflections on the privatization of autism services and how ‘ABA has become “the single most reliable way to make money in the human services field beyond being a physician.”’ (2022, Fortune)
Severe maternal morbidity and other perinatal complications among women with disabilities. (2022, Paediatric and Perinatal Epidemiology)
Committing to Health Equity for All, Including People with Disability (2022, Mathematica)
Why billions in Medicaid funds for people with disabilities are being held up (2022, NPR)
People with disabilities left behind by telemedicine and other pandemic medical innovations. (2022, CNN)
Ageism: Signs, Causes, and How to Address It (2022, Healthline)
Pregnancy among Women with Physical Disabilities: Unmet Needs and Recommendations (2022, Brandeis)
'I am a medical student with significant hearing loss. ': Here’s what the pandemic has been like for me and others with my disability (2022, AAMC)
Technical Standards from Newly Established Medical Schools: Review of Disability Inclusive Practices: "medical schools may perpetuate historically restrictive technical standards that serve as barriers to applicants with disabilities." (2022, Journal of Medical Education and Curricular Development)
Many doctors are still befuddled by accommodating people with disability (2022, Stat News)
A new book, Deaf Rhetoric “An Ecology of Health Communication” (2022, Spriner)
Program Access, Depressive Symptoms, and Medical Errors Among Resident Physicians With Disability. 'Our study establishes an association between a lack of accessibility and heightened risk for depression and self-reported medical errors during training.' (2021, JAMA Network)
An article on Ableism: Types, examples, impact, and anti-ableism. “In healthcare, ableism can affect interactions with doctors and other professionals, healthcare policies, and health outcomes. The idea that disabled people have less value or lower-quality lives contributes to damaging practices that persist today.” (2021)
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Food Security and Nutrition
Why Food Sharing Is at the Heart of the Disability Justice Movement (2023, Eater)
Why the Formula Shortage Is Also a Disability Rights Issue (2022, Yes Magazine)
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History and Memorial
Overview
Review of 'Ordinary Lives: Recovering Deaf Social History through the American Census' (Oct, H-Disability)
Writing Mad Lives in the Age of the Asylum
“Using the writing of former asylum inmates, as well as other sources, Writing Mad Lives in the Age of the Asylum reveals a history of madness and the asylum that has remained hidden by a focus on doctors, diagnoses, and other interventions into mad people’s lives.” (Oct, Oxford University Press)
Steve Silberman, 66, Dies. Writer Deepened Understanding of Autism. (Sep, New York Times)
Stories from the Archives: Six essays exploring experiences of Disability in Early America. (Aug, All of Us)
A Road Trip into the Deaf History of Martha's Vineyard “In the 1800s, so many residents of Martha’s Vineyard were deaf that they created their own sign language. As a deaf traveler, I took a road trip to see how visitors can experience that legacy today.” (Aug, AFAR)
Disability rights group tells history of State Hospital through ‘people, not patients’. (Jul, South Carolina Daily Gazette)
Education as spectacle: Helen Keller and the impossible performance of blindness at the Perkins Institution. (Jul, International Journal of the History of Education)
Disability in the Gilded Age and Progressive Era. Teaching resources. (Jun, Emerging America)
Award-winning poet, Blade contributor Kathi Wolfe dies ‘Tireless in her pursuit of justice for queer disabled people’. (Jun, Blade)
Losing Connie a tribute to Connie Rim, who shared publicly her journey with her Cerebrospinal fluid (CSF) spinal leak.
“What else can I do but try and transmute my rage and my grief about Connie's death and the unfairness of it all into something that can move the needle on all of this mess?” (May, Jodi Ettenberg)
Disability and Employment in the United States, 1880–1955: Implications for Human Resource Development Practice and Research. (May, Human Resource Development Review)
Asian American Disability: A History and Its Archives “Ability has been central to Asian American history”. (Apr, Journal of American Ethnic History)
Review of 'Miriam Hearing Sister: A Memoir' the family of two deaf sisters before, during and after the second world war. (Mar, H-Disability)
Paul Alexander, polio survivor in iron lung for over 70 years, dies at 78 (Mar, NBC News)
Brooke Ellison, Prominent Disability Rights Advocate, Is Dead at 45 “Author, professor and powerful voice for disabled people.” (Feb, New York Times)
Disability History “Interpreting disability history is one way historians and their communities, public or academic, can practice access and inclusion.” (Jan, The Inclusive Historian's Handbook)
Constructing Disability after the Great War a book on American narratives about blinded soldiers versus the realities of their everyday lives. (Jan, University of Illinois Press)
Renegades “documentary series showcases the lives and cultural contributions of little-known historical figures with disabilities.” (PBS)
Mark Bookman: We Miss Knowing That You're There (2023, The Datekeepers)
Ady Barkan, Health Care Activist Spurred by His Illness, Dies at 39
‘“That’s the paradox of my situation,” he told The New York Times in 2019. “As my voice has gotten weaker, more people have heard my message. As I lost the ability to walk, more people have followed in my footsteps.”’ (2023, New York Times)
How Civil War Veterans Transformed Disability an online exhibit. (2023, Emerging America) See a discussion on the Debrief.
Book review of Disability Dialogues Advocacy, Science, and Prestige in Postwar Clinical Professions. (2023, H-Disability)
How deaf education has changed in Minnesota over 160 years (2023, MPR News)
Book review of The Mark of Slavery Disability, Race, and Gender in Antebellum America. “The Mark of Slavery is an important development for histories of slavery and disability, importantly using analysis of gender to foreground disability in the history of slavery.” (2023, H-Net)
Gouverneur Morris, writer of Constitution’s ‘We the People,’ was disabled (2023, Washington Post)
$2.3m grant will fund Denver monument to historic disability rights protest “The Mile High City will create a new monument to a 1978 protest that was a landmark for the disability rights movement” (2023, The Art Newspaper)
Juneteenth and the legacy of disabled Black slaves “Finding firsthand accounts of disabled, enslaved African Americans proves to be a daunting task, but it is evident that many were unable to leave forced labor camps after the Civil War ended and remained within the institution of slavery (or its rebranding, sharecropping).” (2023, AWN)
Don Triplett, the first person diagnosed with autism, dead at 89. (2023, WLBT)
After 504: Training the Citizen-Enforcers of Disability Rights
| Disability Studies Quarterly (2023, Disabilities Studies Quarterly)
The long history of staring in the disability community personal and illustrated exploration. (2023, Washington Post)
37 years and over 100 arrests: Longtime disability rights icon Anita Cameron is retiring from protests. (2023, the 19th)
Meet Zona Roberts: The grandmother of the disability movement turns 103. (2023, University of California)
Book review of 'Public Hostage, Public Ransom: Ending Institutional America' an autobiography by William Bronston. (2023, H-Disability)
Google Doodle Spotlights Kitty O'Neil, Deaf Stuntwoman and Daredevil, on her 77th birthday. (2023, CNET)
Book review of 'Money, Marriage, and Madness: The Life of Anna Ott' “Swiss immigrant Anna Barbara Blaser Miesse Ott (1819-93) became a woman of means and a practicing doctor, only to spend her last two decades in the Wisconsin State Hospital for the Insane.” (2023, H-Disability)
Deaf Printers Pages “preserves the last of many generations of Deaf people who learned printing in school and worked at local and national newspapers around the country. From the 1970s-2000 more than 125 Deaf people found employment at The Washington Post.” (2023)
‘Disability is not a tragedy’: the remarkable life of activist and rebel Hale Zukas. “Born in an era when disabled people were routinely institutionalized, Zukas fought for – and won – access to transportation and better urban design”. (2023, the Guardian)
'Revolutionary': Remembering John Boyer a pioneer for the deaf and blind in computer science. “He foresaw very, very early that the use of computers was a way for people with disabilities, who are vastly underrepresented in the job force, to be able to work,” (2023, Wisconsin State Journal)
Mary Pinotti Kaessinger “Revolutionary, disability justice and rights fighter, labor organizer – Rest in power!” (2023, Workers World)
An Accessible City For All: History of Disability Rights in New York:
“In 1935, a small group of activists calling themselves the League for the Physically Handicapped staged a “death watch” at the Works Progress Administration offices in Manhattan. Their demand was New Deal jobs for New Yorkers with disabilities–which they won.” (2023, Museum of the City of New York)
The Curious Case of Carson McCullers: Appropriation, Allyship, and the Problem of Speaking for Others. (2023, Disability Studies Quarterly)
Disability Dialogues a book on the “Advocacy, Science, and Prestige in Postwar Clinical Professions” (2022, Johns Hopkins University Press)
How should we reckon with history’s uncomfortable truths about disability? “My research found that eugenics, a theory popular from the late nineteenth century until World War II, had an early but profound influence on educational policy that lingers to this day in the rationale for, and funding of, educational provisions for students with disability.” (2022, Monash)
Landmark disability rights figure Lois Curtis dies. (2022, NPR) See more about her legacy on 19th News.
Disability Culture So Far: “A Movement in Milestones” – highlights from disability arts. (2022, Art in America)
Carl Croneberg, Explorer of Deaf Culture, Dies at 92. Croneberg “helped write the first comprehensive dictionary of American Sign Language and was the first to outline the idea of Deaf culture as a distinct part of society and one worth studying”. (2022, New York Times)
The upsetting online market for historic asylum patient records. “These files contained details such as physicians’ notes on diagnoses, test results, and therapy notes, in addition to accounts of violent treatments like electrotherapy and hydrotherapy” (2022, Slate)
A new book: Work Requirements: Race, Disability and the Print Culture of Social Welfare: “yoking the project of social welfare to the consolidation of a work society and powerfully revealing their shared entanglement in racialized fantasies about the ‘able’ body.” (2022, Duke University Press)
The Untold Origins of the Black & Blind Musician (Video feature, 2022, PBS Origins)
Life at a Distance: Archiving Disability Cultures of Remote Participation. “Autistic self-advocacy, for instance, famously emerged in the 1990s from internet discussion boards, which allowed autistic adults to connect and form communities without having to socialize in person (Sinclair 2010). Even earlier, in the 1940s and 50s, institutionalized disabled people used technologies such as sending quilt patches to their families (as forms of storytelling), while disabled people living at home with families shared tips and tricks in print newsletters for making houses more accessible” (2022, Just Tech)
Inside the Pentagon’s shameful effort to draft mentally disabled men to fight in Vietnam (2022, Task & Purpose)
Google Doodle Honors Disability Rights Activist Stacey Park Milbern (2022, CNET)
Crip/Mad Archive Dances: Arts-Based Methods in and out of the Archive (2022, Theatre)
The Helen Keller Exorcism. Brilliant rollercoaster-ride of an episode, remembering Helen Keller and her myths today. (complete with transcript, 2022, Radiolab) See also a feature on Helen Keller's Legacy (Teen Vogue).
Disabled Ancestry Should Be Embraced With Pride (2022, NYT)
Harriet Tubman’s Disability and Why it Matters (2022, Ms Magazine)
The letter that Helen Keller wrote after she visited the Empire State Building.
“I will concede that my guides saw a thousand things that escaped me from the top of the Empire Building, but I am not envious. For imagination creates distances and horizons that reach to the end of the world. It is as easy for the mind to think in stars as in cobble-stones.” (2022, Letters of Note)
Darby Penney, Who Crusaded for Better Psychiatric Care, Dies at 68 (2021, NYT)
Neil Marcus, Whose Art Illuminated Disability, Dies at 67 See more about Neil in the introduction and the last newsletter. (2021, NYT)
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Remembering Judy Heumann
The Impact of Judy Heumann’s Legacy Within the Disability Community (2023, Women Enabled International)
"Lift Me Up" A Tribute to Judy Heumann (2023, Lachi Music)
Remembering Judy Heumann: tributes from those that knew her, introduced by Jim LeBrecht. (2023, International Documentary Association)
Remembering the mother of the disability rights movement. An interview with Sandy Ho. (2023, Slate)
Statements of President Joe Biden and Vice President Kamala Harris on the Passing of Judy Heumann. “Judy Heumann was a trailblazer – a rolling warrior – for disability rights in America.” (2023, The White House)
What the next generation of disability activists can learn from Judy Heumann. (2023, WBUR)
Judy Heumann’s life is a testament and a reminder personal tribute by Rebecca Cokley. (2023, CNN)
Because she made a fuss, Judy Heumann made everyone's life better segment from Rachel Maddox. (2023, MSNBC)
Obituary: Judy Heumann, disability rights activist, dies at age 75. (2023, AP News)
Super Heumann: Steve Way on the legacy of the late, great disability activist Judy Heumann. “Thank you for giving me so many opportunities to have the life that I choose for myself.” (2023, Steve Way's Substack)
“All Voices Matter” Remembering Judy Heumann with tributes from Communication FIRST. (2023, Communication First)
Judy Heumann: The Legacy of Leadership. “It is often said that true leaders don’t build followers, they build more leaders.” (2023, U.S. Department of Labor Blog)
Memories of Judy Heumann, my Oldest Friend. “Although she is a fantastic communicator, Judy didn’t always warn people about what she volunteered them to do.” (2023, Helen: The Journal of Human Exceptionality)
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Humanitarian, Migrants and Refugees
Overview
Refugees with Disabilities Struggle to Join the Workforce (2022, Chicago Monitor)
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Migration
Standing on Our Own Two Feet: Disability Justice as a Frame for Reimagining Our Ableist Immigration System:
“The immigration system remains an ableist project of sorting bodies based on their ability to produce labor and otherwise conform to an imagined, nondisabled normate. Disability justice offers a new frame for analyzing immigration laws, policies, and practices, as well as specific solutions to transform the system from a sorting mechanism to one that more effectively and humanely facilitates migration” (Apr, UCLA Law Review)
Migrants with disabilities struggle to access the U.S. asylum system “The CBP One phone app, which most migrants use to begin the U.S. asylum process, isn’t accessible to those who are blind, deaf, have mobility issues, or have intellectual disabilities, according to a complaint.” (Mar, Texas Tribune)
Representing asylum seekers with disabilities relevant law. (2023, Human Rights First)
Immigrants with Disabilities Face Barriers in Immigration Court “as they navigate deportation proceedings in U.S. immigration courts, where they must gather and submit evidence, testify, and present their case, often without a lawyer.” (2023, Human Rights First)
Venezuelan family seeks asylum at border with baby and disabled daughter to escape cartel. (2023, WOAI)
U.S. removes Trump-era barriers to citizenship-test waivers for disabled immigrants (2022, NPR)
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Independent Living and Deinstitutionalization
Overview
No Place Like Home: People with Disabilities' Fight to Stay Out of Institutions (Video report, Mar, CBS News)
Florida kept disabled kids in institutions. A judge is sending them home. “The ruling could have sweeping implications for thousands of disabled people across the country who rely on state-provided home health-care services” (2023, Washington Post)
How electronic visit verification discriminates against disabled Americans. “The Vast Surveillance Network That Traps Thousands of Disabled Medicaid Recipients” (2023, Slate)
After ‘losing my life’ caring for a sick partner, a professor examines the U.S. caregiver crisis. (2023, Stat News)
Alice Wong on What I've learned being reliant on a caregiver: “My well-being is tied to the well-being of the people who care for me.”:
“Care is not a checklist of tasks and responsibilities. Care is a shared value and actions operating in a larger political context within a hypercapitalist, racist, ableist society that devalues certain types of labor and bodies. Conversations by policy experts and advocates about the caregiving crisis can be too abstract, and any meaningful structural and cultural change must acknowledge the tensions, human toll, material consequences, complexities and nuances about care from the people who provide and rely on it.” (2023, CNN)
Why Nursing Home Reform Is Finally Coming (2022, Next Avenue)
Medicaid's Money Follows the Person has allowed over 90,000 people with disabilities and seniors to move out of nursing homes and back into their communities. But Congress still won’t make the funding permanent. (2022, 19th News)
Profit, Pain and Private Equity: ‘BrightSpring Health Services, which KKR bought in 2019, says it helps thousands of people with disabilities “live their best lives.”’:
‘But a yearlong BuzzFeed News investigation found that KKR focused on expanding the business even as a crisis mounted in its group home division, where conditions grew so dire that nurses and caretakers quit in droves, a state prohibited the company from accepting new residents, and some of the most vulnerable people in its care suffered and died.’ (2022, Buzzfeed News)
The Care Crisis Isn’t What You Think "When it comes to disability, we devalue care (both caregiving and paid care work) because we devalue the people who need it." (2022, Prospect)
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Conditions in Institutions
How a Leading Chain of Psychiatric Hospitals Traps Patients
“In at least 12 of the 19 states where Acadia operates psychiatric hospitals, dozens of patients, employees and police officers have alerted the authorities that the company was detaining people in ways that violated the law, according to records reviewed by The Times.” (Sep, New York Times)
Bed bugs found at disability, special needs center in South Carolina (Jun, Local 12)
Autistic Students at Shrub Oak School Have Suffered Without Oversight
“This School for Autistic Youth Can Cost $573,200 a Year. It Operates With Little Oversight, and Students Have Suffered.” (May, Pro Publica)
Algorithms guide senior home staffing. “The nation’s largest assisted-living chain uses a staffing algorithm; some managers say they quit or were fired after they complained it left facilities dangerously short-handed” (Apr, Washington Post)
16,000 people with disabilities are in state-operated institutions. This is how experts say health care should change. (Apr, CBS)
An N.C. hospital sues an 18-year-old to move to a nursing home. She says no. (Feb, NPR)
Unsafe: Abuse and neglect of Arizona's most vulnerable can happen anywhere (2022, Kjzz)
At a Remote Mental Health Facility, a Culture of Cruelty Persists Despite Decades of Warnings. (2022, Pro Publica)
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Indigenous People and Minority Communities
Indigeneity and Disability: The Teachings of our Ancestors. “In my Indigenous community, Diné (Navajo) ancestral teachings of disability are a relational concept that embodies a sophisticated value system of care” (2023, Disability Visibility Project)
Understanding Disabilities in American Indian & Alaska Native Communities, a toolkit to increase awareness and knowledge. (2023, NICOA)
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International Cooperation
Disability Rights as Foreign Policy a speech by Secretary Antony J. Blinken. (Nov, US Department of State)
Nothing Without Us: USAID Disability Policy 2024 “Any issue affecting humanity is necessarily of relevance to persons with disabilities.” (USAID)
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Justice Systems and Legal Capacity
Disability rights and disability justice in prison: the limits of state-protected rights and the possibilities of mutual support:
“the research subjects not only revealed the limits of disability rights in prison, but ways in which corrections officers used accommodations and personal assistance as means of harassing disabled inmates. Despite the failure of rights, persons with disabilities and their allies found ways to access care through mutual relationships and informal networks. This finding supports a disability justice perspective that argues that argues state-sponsored rights have failed specifically marginalized persons with disabilities, but also argues that disability emancipation can be found through peer-based mutual care.” (Sep, Disability & Society)
The Supreme Court just opened the door to the criminalization of disability. “the Supreme Court just held that people experiencing homelessness could be subject to criminal and civil penalties for sleeping in public spaces”:
“Data reveals that 78 percent of homeless people report having mental health conditions, and an estimated 52 percent of homeless adults in shelters nationwide have a disability.” (Jul, Slate)
This Judge Is Blind. He Wishes Our Justice System Were, Too. “In a new memoir, David S. Tatel recounts a remarkable career as a civil rights lawyer and federal judge, and the challenges of contending with the disease that took his vision.” (Jun, New York Times)
New York prisons are illegally subjecting disabled people to solitary (May, Prism)
Disability Justice and the Coalition to Stop Cop City (May, Narrative Initiative)
Cop City Is a Disability Justice Issue, Too “Disability justice activists are joining grassroots efforts to shut down Atlanta’s Cop City, the largest police training campus in the U.S.” (Mar, Yes!)
Long-Term Solutions to the Overincarceration of People With Mental Health Disabilities “Policymakers must focus on long-term structural changes in order to reduce the negative interactions of people with mental health disabilities with police.” (Jan, CAP 20)
Prisoners with dementia “One image has especially haunted me: that of a prisoner who, as a result of cognitive impairment, no longer remembers his crimes — but is still being punished for them.” (2023, New York Times)
“Decarceration efforts led to the closure of psychiatric hospitals and large facilities that warehoused people with disabilities. Activists against mass incarceration can learn from the past.” (2023, 19th News)
For Deaf People in Prison, FCC Mandates Videophone Call Access. (2023, The Marshall Project)
Will shock treatment finally be banned? “The fact that autistic students are still being shocked at the Judge Rotenberg Educational Center is unconscionable.” (2023)
House Approves Ban On Electric Shock Devices For Those With Developmental Disabilities. (2022, Disability Scoop)
Lawsuit argues the Americans with Disabilities Act should apply to transgender rights (2022, Washington Post)
Discussion on When an Intellectual Disability Means Life or Death revisiting the case of Pervis Payne and how a disability claim reduced his death sentence to life in jail after over 30 years. (2022, Undark)
A discussion about the relationships between law, political economy and disability (2022, LPE Project)
Back to contents.
Lived Experience and Opinion
No, we don’t all have the same 24 hours in a day: On chronic pain and freelancing in an unreliable body. (Nov, Disability Visibility Project)
Too Much in Jeopardy a poetic reaction to Trump's election. (Nov, The Listening World)
In Defence Of Masking At Work: Four Challenges To The Current Trend. (Oct, Forbes)
The False Radicalism of Corporate Disability Literature. scathing critiques. (Oct, Lithub)
The Braille Encyclopedia: Brief Essays on Altered Sight. “Told in the form of imagined alphabetical encyclopedia entries, this meditation on progressive vision loss examines and illuminates Cohn’s at first halting then avid embrace of braille as part of relearning to read and write as an adult.” (Oct, Rose Metal Press)
Disability, pleasure and ageing. Alice Wong with an intimate and explicit essay on the “pleasure principle”:
“Because of, not in spite of, the current status of my health, I still lust for pleasure. Hands stroking my thighs, fingers running through my hair, an arm wrapped around my waist. I want to touch, taste, feel everything. My twisted body writhing from delight rather than pain. ” (Sep, Archer)
The Last Time I Climbed A Mountain
“That morning on the mountain, there are many things I don’t yet know: that this will be the pivot, that the pain will stay. That wheelchair tires leave tracks upon the land, a different kind of footprint. That I will learn to hike again, sometimes on pavement or on boardwalk, sometimes through moss or over hard-packed ground. But not across the sand. Not among the stones.” (Sep, Brevity)
Exceeding my life expectancy as a Black disabled woman
“Getting older as a disabled person feels more like a privilege than a setback. I know so many disabled comrades who passed before they reached the age I am now. Death and grief are too commonplace for us. Each year, I feel that my disabled circle gets smaller and smaller as someone else I connected with over the course of my life dies. It’s jarring to know that getting older is a privilege for us, and it pains me that we must navigate grief and loss so much more often than nondisabled people. For those of us who are “lucky” enough to grow older, we become the disabled elders that are so desperately needed.” (Jul, Prism)
Healing is not linear. Alice Wong on the years since her health crisis:
“Disabled life is precarious. Precarious not just by changes to the body, but the structural ableism that determines the conditions in which we live in.” (Jun, Disability Visibility Newsletter)
My Daughter Has a Disability. This Is the Reaction I Hate the Most (Jun, Today)
A Disability Studies Analysis of Alcohol Use: Understanding Personal Experiences through Dominant Discourses on Addiction:
“Ultimately, I have been able to describe the need for recovery paradigms that do not rely on the dominant deficit discourses that position all people experiencing addiction as either morally defective or medically deficient. Instead, I have been able to seek out and find liberatory spaces and communities promoting counter-narratives that are bolstered by [Disability Studies] theory” (Jun, Disability Studies Quarterly)
The monsters that made me: Growing up as a disabled horror movie fan:
“From a young age, I subconsciously related to monsters, madmen, and every combination thereof. Many even taught me to frame disability in a positive fashion. The archetypal antagonists from the golden age of horror cinema — the Wolfman, Dracula, Frankenstein’s monster — all underwent a transformation to be imbued with extraordinary, otherworldly gifts. Their differences were a source of power, inverting the traditional view of disability as a hindrance, a burden.” (May, Polygon)
I'm More than My Disability, I'm Also a Huge Bitch. (May, The Squeaky Wheel)
Disability Worlds by Faye Ginsburg and Rayna Rapp, who: “chronicle and theorize two decades of immersion in New York City’s wide-ranging disability worlds as parents, activists, anthropologists, and disability studies scholars.” (Apr, Combined Academic Publishers)
Living With Muscular Dystrophy Makes Death My Shadow Partner by Alice Wong. (Mar, Time)
I’m Not The Only One In My Family With A Disability. But I’m the First to Release Shame (Mar, Refinery29)
What Can Deaf Philosophy Teach the World — and How Will It Change It? An interview with Teresa Blankmeyer Burke. (Feb, Truthout)
Your 2024 Disability Horoscopes (Jan, The Squeaky Wheel)
Sick of Exclusion: Making Space for Chronic Illness in Disability Advocacy Spaces:
“The medical model of disability does everyone harm, and should not be the prevailing way of framing disability in our societies. However, the emphasis placed on divorcing disability from a medical context often makes chronically ill people the scapegoat.” (Jan, Women Enabled International)
Bowling Without Sight Scott Krahn and Robb Fischer’s short film follows a trio of friends who take part in a bowling league for people who are visually impaired. (Jan, New Yorker)
Justin Cooper: The Accessibility Advocate A Black disabled photographer, filmmaker and podcaster. (2023, Chicago Reader)
He hits four L.A. raves a night in a wheelchair: ‘We need more disabled people going out’ (2023, Los Angeles Times)
How to navigate a chronic illness Whether it’s your own or someone else’s (2023, Vox)
My Tattoos Have Helped Me Reclaim My Chronic Pain “My life involves two kinds of needles.” (2023, Refinery29)
How a Blind Black Entrepreneur Thinks About Race thoughtful interview with Kamille Richardson. (2023, Who We Are to Each Other)
Against Technoableism review of Ashley Shew's book: “she argues that technoableism — the popular depiction of tech as a wholesale cure for disability — does real damage by positioning the disabled body as fundamentally broken.” (2023, New York Times)
Disability Ink Goes Mainstream challenges of getting a tattoo with a physical disability and how they can be a “great way to celebrate and commemorate your life on wheels.” (2023, New Mobility)
Blindness transformed my social world, and I changed with it:
“Especially disruptive were the sudden and striking changes in my interactions with others. Strangers often seemed anxious around me. Even people I had known for years sometimes avoided me. Other blind people told me of family members who were embarrassed by their blindness.” (2023, Psyche)
How adaptive gardening shifted my self-perception as a disabled woman (2023, Washington Post)
The Accessibility Profession Can Be Stressful, Exhausting, and Frustrating (2023, Access * Ability)
Welcome to the Disabled Future ”I am aware of the way my body serves as a warning”: a comic illustration of the disabled future. (2023, The Nib)
I Have a Choice to Make About My Blindness
“I could pull out my phone and try to use its magnification or text-to-speech capabilities to read the menu, or ask my family for help. There’s a powerful tension between the independence facilitated by assistive technologies, and the possibility of interdependence that can emerge from the exchange between disabled and non-disabled people. This tension has never been more pronounced than today, when advances in technology stand to usher in an unprecedented era of independence for disabled users.” (2023, New York Times)
We don’t all “have the same 24 hours.” “One of the things that people with disabilities inherently lose access to when we become disabled is that we don’t have the same 24 hours as everyone else does. The disability time thief sees to that.” (2023)
Loving Our Own Bones “A transformative spiritual companion and deep dive into disability politics that reimagines disability in the Bible and contemporary culture”. By Julia Watts Belser. (2023, Beacon Press)
‘I Don’t See the Wheelchair, I Just See You,’ Says Lying Coworker Who Does See Wheelchair. (2023, The Squeaky Wheel)
What Does It Mean to be Blind? A Writer Chronicles the Loss of His Vision. In “The Country of the Blind,” Andrew Leland explores the history, the culture and the experiences of blind people. (2023, New York Times)
Beyond Dining in the Dark: What It’s Actually Like to Eat Out When You’re Blind. “The biggest problem for a blind diner has very little to do with any mechanical or logistical difficulty of blindness, and instead centers on the condescending, exclusionary, or simply ignorant attitudes and behaviors of sighted people.” (2023, Eater)
Borges Dealt With His Anxiety About Going Blind by Learning a New Language. Andrew Leland on His Own Weakening Vision, Braille, and Making a Commitment to Read with Visual Aids. (2023, Lithub)
Crip Negativity an open-access book by J. Logan Smilges. “Smilges asks and imagines what horizons might exist for the liberation of those oppressed by ableism—beyond access and inclusion. [...] Smilges proposes that bad crip feelings might help all of us to care gently for one another, even as we demand more from the world than we currently believe to be possible.” (2023, Manifold @uminnpress)
"All the parts work together": Author Sara Nović on Identity, Adoption, and Falling Short as a Parent. (2023, Mutha Magazine)
Honoring All of Ourselves: On Disability and Transness. “Transness and disability are frequently linked and presented as a danger by state legislatures as they dehumanize trans people and deny rights” (2023, Disability Visibility Project)
Quad moms: Portraits of mothers with disabilities (2023, CBS News)
Low and Slow A series on the joys and pleasures of eating, cooking, and sustenance (2023, Eater)
Activism, Adaptation, or Awareness? Different modes of action in modern disability culture. (2023, Disability Thinking Monthly)
Our Son Has Down Syndrome. Then we started to hear a line that many parents of a child with a disability hear: “God only gives a burden to those he knows who can handle it.” (2023, Huffpost)
My Son & I Both Have Autism. My Wordless Days With My Son Are Filled With Love (2023, Romper)
Disability Conference Rejoices in Disregarding the Pandemic Just Like Everyone Else. (2023, The Squeaky Wheel)
How A Disabled Chinese Immigrant Turned Polio And Ableism Into Becoming An Apple Executive And Author (2023, Forbes)
I Am Going Blind, and I Now Find It Strangely Exhilarating. “Daily life has a renewed delight and vigor. I am learning new things constantly. The most ordinary tasks, like going to the post office, have become terrifically interesting. In terms of everyday life, I feel that I am finally in there, more mindful and alert, more fully present. I have chosen curiosity over despair.” (2023, New York Times)
Disability Is Always Someone Else’s Problem Why I’m not celebrating Disabilities Awareness Month. (2023, The Nation)
Imani Barbarin: My Experience As A Black Woman With Cerebral Palsy I Didn’t Think I’d Make It Into Adulthood (2023, Refinery29)
5 Things I Wish I Understood As A Disabled Youth Andrew Pulrang's thoughts for young disabled people. (2023, Forbes)
Alice Wong on Hospitalization, Crowdfunding Medical Care, and Finding Love In Community: “a paper tiger is delicate and light, it can fold and transform itself, resisting the forces that seek to crumple it” (2023, Teen Vogue)
Five Ways to Clarify You’re (Badass) Disabled and Not (Inspirational) Disabled (2023, Squeaky Wheel)
Profound discussion of how ableism enables all forms of inequity. “Ableism plays a leading role in how we frame, understand, construct and respond to race, class, gender, sexual orientation, ethnicity, nationality, criminal status, disability, and countless other identities.” (2023, Truthout)
4 Ways People With Disabilities Can Have Privilege Too “Money can buy at least some access and opportunity – which in turn increases social acceptance, and can even reduce a disabled person's exposure to ableism”. Neatly summed up in Game of Thrones as “If you’re going to be a cripple, it’s better to be a rich cripple.” (2023, Forbes)
Deaf Role Model of the Month: Pamela Molina (2023, Deaf Unity)
How Innovation Sets Me Backwards Tech that could be enabling me is impairing me instead. (2023, Immerse)
Sipping Dom Pérignon Through a Straw. Autobiography by Eddie Ndopu. “Reimagining Success as a Disabled Achiever” (2023, Legacy Lit)
What disabled people know about making better New Year’s resolutions resolutions to do less and quit Yoga. (2022, Washington Post)
'My Life Is in My Caregivers' Hands': Disability Advocate Alice Wong's Vision for a New Approach to Health Care. (2022, KQED)
Year of the Tiger. Alice Wong's book on her activist life: “Drawing on a collection of original essays, previously published work, conversations, graphics, photos, commissioned art by disabled and Asian American artists, and more, Alice uses her unique talent to share an impressionistic scrapbook of her life as an Asian American disabled activist, community organizer, media maker, and dreamer.” (2022, Disability Visibility Project) See an exerpt in Teen Vogue.
Our Meeting on Accessibility Is Just Down Those Stairs. “There is a special lift that would help you down the stairs, but it has been out of order for the last ten years.” (2022, McSweeney's)
Progress Over Perfection: A Better Way to Accessibility: “Don't wait until everything is done and perfect. The small steps make a big difference. [...] Educate, don't berate.” (2022, Meryl Evans)
Alice Wong: I Still Have a Voice.
“While recovering, communication access is one of my greatest challenges since I can no longer speak. People have talked over me, ignored me, or became impatient as I type my responses. I currently use a text to speech app called Proloquo4text. The voice options are robotic, clinical, and white. It mispronounces slang and Chinglish, a mix of Mandarin and English which is part of my culture. It also fails to capture my personality, cadence, and emotions.” (2022, KQED)
Constant Cravings “My feeding tube means I can no longer enjoy the feeling of being sated after a meal. But there are other ways to nourish myself beyond my body.“ (2022, Eater)
Queer, Crip and Here: Meet blind writer Caitlin Hernandez (2022, Washington Blade)
For 'disabled oracle' Alice Wong, rest is a radical act. (2022, Los Angeles Times)
11 Disability Rights Activists on Where the Fight for Justice Stands (2022, Teen Vogue)
What It's Like to Fall a Lot Because of My Disability “Really, I probably fall as often as you get Starbucks.” (2022, The Mighty)
Growing Up As A Disabled Latinx Immigrant In America. “I believe that my community is best served when we gather and envision a liberated world outside of oppressive systems, and we fight toward it everyday. We’ve always been our own best answers.” (2022, Refinery29)
My ICU Summer: A Photo Essay. Alice Wong's harrowing experience in the hospital system. (2022, Disability Visibility Project) Alice is fundraising to get the resources needed to live in community.
I’m Going Blind. This Is What I Want You to See. “It’s time to expand our definition of blindness.” (2022, NYT)
My Experience as an Immigrant and Expectant Mother with a Physical Disability. (2022, Blogs @ Brandeis)
Benevolence Porn “I suggest that we consider benevolence porn as a means of distinguishing media attention that centers the abled person rather than the disabled person.” (2022, Not an Angry Deaf Person)
A new book, by John Kemp, Disability Friendly: How to Move from Clueless to Inclusive, “a call to action for businesses around the world to realize the opportunities presented by employing people with disabilities.” (2022, Lakeshore)
The Tragedy of Nondisability: A Sad and Boring Life. “As crip testimonies show, it can be a relief to be liberated from nondisabled culture, with its fixation on prescriptive life-stages and rituals, to be followed in a specific way and at specific times from birth until death. Crip culture stands in opposition to this culture, as a site of non-normativity, resistance, and playful world-building.” (2022, Biopolitical Philosophy)
‘Is That Ableist?’ Good Question. (2022, NYT)
Disabled Community Disappointed that Corporations Don't Pander to Them During Disability Pride Month “I have the right to be pandered to and patronized just like any able-bodied person,” one disabled consumer told us. “I already pay more for accessibility in my daily life; I have the right to pay more for branded pride merch too.” (2022, Squeaky Wheel)
Selma Blair: It’s Time We Shift the Story About How Disabled People Are Represented (2022, Variety)
Observing Disability Pride Month this July (2022, Human Rights Watch)
Americans with Disabilities Act Turns 32 Buys a Motorcycle and Gets a Cute Pixie Cut (2022, The Squeaky Wheel)
Care Tactics an essay on “hacking an ableist world”, the tech that goes viral versus the adaptations we actually use the new worlds that disabled people and their caregivers are building. (2022, The Baffler)
“The concept of crip time emerges from disabled experience and acknowledges that people with disabilities experience time and the demands of time differently from nondisabled persons. Crip time means that we may need to sleep more or longer, that it may take us longer to cook a meal, that it might take longer to get from point A to point B, or—most relevant to the academy—that it might take longer to write the book, that we may need to schedule meetings later in the day because that is when our bodies and minds are most functional, or that we may need additional time on our tenure clock because of health-related disruptions in our scholarly production.” (2022, Inside Higher Ed)
In New York City, a video feature on wheelchair users, discussing adaptive sports, accessibility and inclusion. (2022, CUNY TV)
The Micropedia of Microaggressions - the first encyclopedia of microaggressions. (2022)
Short documentary film, My Disability Roadmap “The path to adulthood is a precarious one for those with disabilities. So Samuel Habib, 21, seeks out guidance from America’s most rebellious disability activists.” (2022, NYT) The NYT page doesn't load properly for me; you can also see the film at Like Right Films.
Disability Justice Resource Directory evolving curation of disability justice tools, resources and best practices. (2022, Creating Freedom Movements)
I'm Deaf And I Have 'Perfect' Speech. Here's Why It's Actually A Nightmare. (2022, HuffPost)
Autism Speaks, and It’s Telling Allistics to Shut Up (2022, Jonah Rothman)
Is There A Healthy Place For ‘Inspirational’ In Disability Culture? (2022, Forbes)
I Approach Polyamory With the Same Drive I Do My Work.
'As I hopped across genres [of writing], and from page to screen, nondisabled people would ask, “Why don’t you just be yourself?” and I would hear, in their question, Tell the story we expect: Your disabled life is very hard, you are very sad, but then you overcome it and are very happy. I refused. I’m not Cyborg Cinderella. I’m not a parable. I’m an artist.' (2022, The Cut)
Rebecca Cokley on her Break-up with Little People America:
“It is harmful to be surrounded by people who are actively celebrating the eradication of your people. Because the reality is, average height people and corporations don’t see us as a distinct people, as a culture. We are patients and a market. A majority of average height family members see us as a flaw in the genetic code, a reminder that their loved one is not EXACTLY like everyone else in their family. For some parents, our dwarfism is a reminder that there is always something that they will not fully understand about their child.” (2022, Disability Visibility Project)
If you're interested in controversy about Autism, see this Position Statement on Language, Images and Depictions Concerning Severe Autism This statement criticizes "vocal activists and autism self-advocates" in ways that I don't agree with, but I provide this FYI and because there are important issues in play. (2022, NCSA)
An interesting twitter thread from @cmmhartmann on "feel[ing] torn about the trend of people describing their physical appearance during meetings for those who are blind/low vision. [...] I am uneasy with the assumption that visual details are better." (2022)
Ableism Is More Than A Breach Of Etiquette — It Has Consequences (2022, Forbes)
Disabilities are not binary. Why do we treat them that way? (2022, AAMC)
NPR Life Kit: Don't be scared to talk about disabilities. Here's what to know and what to say, feature with Emily Ladau, with links to further resources. (2022, NPR)
Dave Grohl, of Foo Fighters and previously Nirvana, talks about hearing loss: ‘I’ve Been Reading Lips For 20 Years’ “I’m a rock musician. I’m fucking deaf. I can’t hear what you’re saying.” - and more on how he performs and makes music. (2022, HuffPost)
After Disability Awareness, What’s Next? (2022, Forbes)
Working definition of Ableism updated in January 2022:
A system of assigning value to people's bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism. This systemic oppression that leads to people and society determining people's value based on their culture, age, language, appearance, religion, birth or living place, "health/wellness", and/or their ability to satisfactorily re/produce, "excel" and "behave." You do not have to be disabled to experience ableism. (2022, Talila Lewis)
To Hold the Grief and the Growth: On Crip Ecologies
"Crip ecologies, crip time, crip ingenuity, crip spirit radically aim to question root systems that keep our imaginations limited and starved. How can we channel joy within our own skins before there is the stethoscope, the specialist’s jackhammered interrogation, before all the stigma we battle? I am not asking to look beyond it, because these constraints in our beings are here and ever-present. I am asking, as poets, as curious people who want liberation, how do we revel in the grief and also the growth we experience? In what ways does this unpack how we are taught to perceive place and nature?" (2022, Poetry Foundation)
Tina's art: "How I see the world" Art and photography from someone with Cerebral visual impairment. (2022, Perkins)
You Are Not Entitled To Our Deaths COVID, Abled Supremacy & Interdependence
"My people are dying and terrified. And you don’t seem to care. You don’t seem to care because you don’t see them–see us–as your people too. When you talk to me about racial justice or housing justice or healing justice or gender justice, who exactly are you talking about? Whose justice are you fighting for? Because it never seems to include disabled people or if it does, it is only in theory, not practice; only to make yourself look better. Or only when disabled people are in the room or when disabled people initiate the conversation. " (
"My people are dying and terrified. And you don’t seem to care. You don’t seem to care because you don’t see them–see us–as your people too. When you talk to me about racial justice or housing justice or healing justice or gender justice, who exactly are you talking about? Whose justice are you fighting for? Because it never seems to include disabled people or if it does, it is only in theory, not practice; only to make yourself look better. Or only when disabled people are in the room or when disabled people initiate the conversation. ", 2022, Mia Mingus)
Q&A With Lainey Feingold, Disability Rights Lawyer on structured negotiation and "negotiating instead of suing". (2022, Equal Entry)
What Counts as Seeing A conversation between Alice Wong and Ed Yong, about Ed Yong's books on biology. Includes reflections on ableism in scientific writing:
“I’ve read a lot of writing on the senses, both about humans and other animals, and it’s really striking to me that people gravitate towards big, sweeping statements about humans as a species that clearly don’t apply to all members of the species. One of the most common things you’ll read on this topic, from almost any source, is that humans are a visual species. We are visual creatures. That’s true on average, but millions of people are blind or have sight impairments. So if you’re a blind person, what does it mean to have someone repeatedly tell you humans are a visual species? Does that mean that you’re less than human?” (2022, Orion Magazine)
The Future Is Disabled a new book by Leah Lakshmi Piepzna-Samarasinha, Prophecies, Love Notes and Mourning Songs. (2022, Arsenal Pulp) See an interview on Ms Magazine.
Society of Disabled Oracles “a living chorus and archive of disabled wisdom from the past, present and future. We have been waiting for you. This is a collection of ‘telegrams’ by disabled oracles to the world.” (2022)
Reframing Entrepreneurship And Disability To Shape A New Business Culture describes the way we make changes within organizations as 'intrapreneurship'. (2021, Forbes)
On Marta Russell’s Money Model of Disability Locating disability in its economic circumstances, rather than in terms of stigma: seeing the industries of charity and care that commodify disabled people. (2021, Blind Archive)
Back to contents.
Mental Health
Dear elia: letters from the Asian American Abys. A book by Mimi Khúc which “revolutionizes how we understand mental health”:
“Khúc traces the contemporary Asian American mental health crisis from the university into the maw of the COVID-19 pandemic, reenvisioning mental health through a pedagogy of unwellness—the recognition that we are all differentially unwell.” (Mar, Duke University Press)
Advocates Fear The Impact Of NYC’s Involuntary Hospitalization Plan. (2022, Huffington Post) See also an extended take on the push to expand involuntary treatment (Mad in America).
Doctors Gave Her Antipsychotics. She Decided to Live With Her Voices: “A new movement wants to shift mainstream thinking away from medication and toward greater acceptance.” (2022, New York Times)
This Teen Shared Her Troubles With a Robot. Could AI ‘Chatbots’ Solve the Youth Mental Health Crisis? “The pandemic hit and this technology basically skyrocketed. Everywhere I turn now there’s a new chatbot promising to deliver new things,” (2022, 74 Million)
Back to contents.
Mobility, Travel, Transport and Tourism
Overview
In New York, Cabbies Say Cost to Move to Wheelchair-Accessible Cars Is Too High. “Drivers rallied outside of a Taxi & Limousine Commission hearing on Thursday as the city tries to figure out how to comply with a judge’s order enforcing a decade-old settlement.” (Oct, The City)
When Driving Is Not an Option a book from Anna Leticia Zivarts on steering away from car dependency. (May, Island Press)
Disabled Riders Need Comprehensive Public Transit Planning “As Washington state shifts to zero-emissions vehicles, it has the opportunity to fund truly equitable and accessible transportation.” (Apr, Next City)
Why Riders With Disabilities Have To Sue For Accessible Transit Stops A Bay Area transit agency is only the latest to be sued over inaccessible stations (Apr, Streetsblog USA)
Disabled People Are Dying in America’s Crosswalks. “The data on traffic fatalities and injuries doesn’t account for their needs or even count them. Better data would enable better solutions.” (Mar, Governing)
Meet the woman behind some of the biggest changes for disabled travelers in over 30 years “Though few people know her name, Emily Voorde helped shape Secretary Pete Buttigeg’s views on disability long before he was advancing policy for the Department of Transportation.” (Feb, the 19th)
Mobility-Friendly Travel Guide a “comprehensive guide designed to make travel accessible, enjoyable, and worry-free for those using wheelchairs, walkers, and canes.” (2023, NCOA)
More states strive to make parks, trails accessible to people with disabilities. (2023, Missouri Independent)
General Motors' Cruise unveils wheelchair-accessible robotaxi: The wheelchair-accessible vehicle called Cruise WAV is based on its Origin driverless vehicle that operates without a steering wheel and pedals with room for passengers to sit facing each other. (2023, Reuters) See a video demo.
Ford Patent Filed For Accessible Scooter “The scooter outlined in this patent would feature a base that can be adapted to connect to the frame of a wheelchair, locking securely into place” (2023, Ford Authority)
Disability rights vs. snowy sidewalks: Seattle's annual conversation. (2022, Crosscut)
How Uber and Lyft still fail their disabled passengers. See also a judgement that Uber doesn't have to provide wheelchair-accessible vehicles in every city. (2022, The Verge)
Biden administration to announce $1.75 billion in funding to improve rail station accessibility (2022, CNN)
Six Things Wheelchair Users Should Know About Autonomous Vehicles (2022, New Mobility)
In New York, M.T.A. Vows to Make Subways 95% Accessible. “It Will Take 33 Years.” (2022, NYT)
Good to see that in NYC the pilor shared e-scooter scheme included possibility to rent wheelchairs or mobility scooters. (2022, NYC Scooter Share)
Accessible Cars Aren’t Born, They’re Made "Car buyers looking for specific mobility features have limited options, but customizers and manufacturers are trying to change that." (2022, Wired)
How 3 travelers with disabilities or chronic illness navigate the world "These travelers cope with an added layer of worry and logistics. Here’s how they do it." (2022, Washington Post)
Amtrak Pays $2.25 Million to Disabled People Who Were Unable to Access Train Stations (2022, Newsweek)
Back to contents.
Air Travel
FAA to define safety criteria for wheelchairs in the cabin. (Oct, Runway Girl Network)
American Airlines to pay record $50 million fine over its treatment of disabled passengers. As well as allegedly mishandling or damaging 1000s of wheelchairs between 2019 and 2023:
“In an investigation into the carrier, the Transportation Department said it uncovered numerous infractions, including cases of American providing "unsafe physical assistance" to passengers. The alleged treatment "at times resulted in injuries and undignified treatment of wheelchair users," the agency said in an announcement Wednesday.” (Oct, CBS News)
Delta Air Lines, DOT update plans for adaptive wheelchair seats on future flights (Oct, USA Today)
Collins unveils narrowbody wheelchair integration concept (May, Flight Global)
Airlines that mishandle wheelchairs face new accountability rules (Feb, NPR)
Travelers, advocates say airlines can do better for disabled flyers Airlines damaged thousands of mobility aids this year: Here's how 30+ flyers were affected. (2023, USA Today)
American Airlines under fire as viral video shows bag handlers callously tossing passenger’s wheelchair. (2023, New York Post)
Air Force One For All: It's Time to Make the Presidential Aircraft Wheelchair Accessible. “The nation’s first presidential aircraft was wheelchair accessible… in 1945!” (2023, Wheelchair Travel)
Taking on the Unfriendly Skies: Are Airlines Hearing Wheelchair Users’ Protests?
“As a high-level quad who flies on a regular basis, it’s disheartening to be asked for more patience when our rights continue to be violated and our lives are at stake. And though little seems to have changed for current flyers, what has changed is the groundswell of voices pushing to bring down one of the last major walls of exclusion from equal access to modern mass transportation since the ADA was passed 33 years ago.” (2023, New Mobility)
United Airlines' disabled customers will soon have more access options “United Airlines' new tool will let you know if your wheelchair will fit on your flight” (2023, USA Today)
Let's Make Air Force One Wheelchair Accessible “Delayed delivery of the next-generation Air Force One will allow Boeing to add a wheelchair securement space and other accessibility features.” (2023, Wheelchair Travel)
The Best and Worst US Airlines for Handling Wheelchairs in 2022 percentages of mishandled wheelchairs ranges from Allegiant's 0.4% to Spirit's 5.8%. (2023)
United Airlines Settles Lawsuit After Wheelchair User Sustains Brain Injury “Nathaniel Foster was a power chair user and college student when he sustained a catastrophic brain injury while deplaning on an aisle chair. His family alleged that United Airlines negligence was to blame and settled with the airline for $30 million.” (2023, New Mobility)
Airlines tried to stop fake service animals. It kept blind people off flights. “New Department of Transportation rules have made flying more difficult, and at times, inaccessible to blind passengers” (2023, Washington Post)
Airlines Will Be Required to Make Bathrooms More Accessible Single-aisle planes will face new rules from the U.S. Department of Transportation—but they won’t go into effect for more than a decade (2023, Smithsonian)
Bill aims to improve air travel for passengers with disabilities. “The Mobile Act would track damaged mobility aids and spur research on designing planes that allow passengers to stay in those aids when flying.” (2023, Washington Post)
Austin Jailer Breaks Elderly Deaf Woman’s Arm at Airport “what was supposed to be a three-hour layover at Austin-Bergstrom International Airport turned into an arrest, a weekend in the Travis County Jail, and an arm broken by a jailer and left untreated for three days.” (2023, The Austin Chronicle)
New bill aims to improve transparency around disability-related air travel complaints. (2023, Changing America)
Start-up Targets Sustainable and Accessible Regional Airliner that can accommodate wheelchairs inside the cabin. (2023, Future Flight)
Short video accompanying air travel: Flying Has Become Hell for Passengers with Wheelchairs. (2023, Vice)
Gaby Assouline dies one year after being ‘thrown’ from Southwest Airlines walkway. (2023, NY Post)
The airline passengers getting 'unacceptable' treatment. 'If I reported every incident, I'd never leave the airport' (2022, CNN)
Embarrassing, Uncomfortable and Risky: A photo-essay feature on what flying is like for passengers who use wheelchairs. (2022, NYT)
Ideas abound as the Department of Transport eyes wheelchairs in the aircraft cabin. (2022, Runway Girl Network)
The Department of Transport Announces First-Ever Bill of Rights for Passengers with Disabilities. The Bill of Rights describes 10 rights for airline passengers with disabilities. (2022, Department of Transportation)
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Policy and Rights
Making Disability Rights History: HHS Announces Powerful Anti-Discrimination Protections:
“The direct result of decades of advocacy by people with disabilities, the new 504 rule represents a giant step forward in the disability civil rights movement.” (May, ACL)
The disappearance of a man with Down syndrome could bring vital change “Rashawn Williams was missing for 6 days, and a public alert was never issued. Legislation would create a new Purple Alert in Maryland for vulnerable people.” (Mar, Washington Post)
Disability Reframed - Exploring the state of disability in America. “Through a series of in-depth reports, Judy Woodruff explores the battles to supply and receive disability care, fights for wage equality, and how climate change disproportionately impacts disabled populations.” (Feb, PBS NewsHour)
Office of Public Engagement Disability Community Newsletter (Jan, White House)
Racial and Disability Justice Policy Tracker a list of bills introduced to congress. (Jan, Center for Racial and Disability Justice)
The State of Disability in Texas a special from Texas Standard featuring a range of issues. (2023, Texas Standard)
Disability Progress Is Real, But So Is Intense Ableism
“There has been significant progress on disability rights, opportunity, and respect that have made life markedly better for at least some disabled people. And most disabled people have more recourse and avenues for improvement than existed decades ago. But still for many, being disabled in 2023 is as bad as it was in the 1950s and before.” (2023, Forbes)
33 Years and Still So Much Work Must be Done: A Reflection on the ADA at 33 (2023, Center for Racial and Disability Justice)
What’s Next For Disability Policy? (2022, Forbes)
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Politics and Elections
Long Lines, Closed Polls, and Water Bans— But Disabled Voters Are Turning Out. “Standing for hours to vote has unique impacts on disabled and chronically ill people.” (Nov, Mother Jones)
What It’s Like to Be a Poll Worker With a Disability “The county calls me back every time, so I must be doing something right.” (Nov, Mother Jones)
Commitment to Our Community Post-Election:
“The results of this election remind us that our progress remains vulnerable without vigilance, action, cross-movement and cross-disability solidarity, and community care and organizing. This is and will continue to be the fight of and for our lives. In times like these, we reflect on our history and our resolve. We are not alone, and we’ve fought before. We must tend to each other and our mission.” (Nov, DREDF)
How the Biden-Harris Administration Is Ensuring Voting Accessibility (Oct, American Progress)
Accessing Democracy “a documentary short that follows Monica Wiley, a Black woman with a spinal cord injury, as she travels the East Coast ahead of the 2024 generational election, interviewing voters with disabilities.” (Oct, National Disability Rights Network)
The Number of People With Disabilities Is Growing and They Are Voting In Greater Numbers:
“the Rutgers Program for Disability Research projects 40.2 million people with disabilities will be eligible to vote in November, a 5.1% increase since 2020 due to an aging population and medical advances.” (Oct, Rutgers University)
Fight beside us – or get out of our way.
“61 million adults in the United States have a disability. This election cycle, there are 40 million eligible disabled voters. We’re one of the country’s largest and most powerful voting blocs. But we’ve been left out of the political conversation for far too long.” (Oct, New Disabled South)
Disability Rights Are Voting Rights
“There is a troubling history in our country of pitting accessibility against election integrity: if it’s easy to vote, the argument goes, then some of those votes must be illegitimate. This idea, of course, has been thoroughly and repeatedly debunked, but misinformation persists, and it acts as a barrier to meaningful change—making it harder for everyone to access their vote.” (Sep, Ford Foundation)
Trump falsely attacks Harris as ‘mentally impaired’ and ‘mentally disabled,’ (Sep, Washington Post)
Disability-rights activists say Biden was ‘set aside, just like so many of us’ (Aug, Politico)
Project 2025 Would Make Workplace Discrimination a Lot Easier “When we look at the specifics, they really are trying to attack and decimate disability rights.” (Aug, Mother Jones)
In Some States, Having a Guardian Means Not Having a Vote “More than a million Americans, many with disabilities, live under a court-approved guardianship. Many states block them from voting.” (Aug, New York Times)
Project 2025 and the Threat to Disabled People
“The plan wants to limit federal agencies that make important government rules. Many rules protect disability rights, including rules about making the digital world accessible. The Project 2025 plan attacks climate science, LGBTQIA people, veterans benefits, women’s health, and much more. All of these attacks affect people with disabilities.” (Jul, Law Office of Lainey Feingold)
Donald Trump Told Me Disabled Americans 'Should Just Die' Trump's nephew shares a comment from the start of the covid pandemic. (Jul, Time)
Project 2025 Could Hurt Disabled People “The potential consequences of Project 2025 could cost disabled Americans their freedom or their lives” (Jul, Gracie Dow)
I’m a doctor. Biden’s debate performance led me to a very different takeaway:
“Historically, the age of U.S. presidents has been a subject of debate and scrutiny, with concerns often raised about their physical and mental capacity to handle the rigorous demands of the presidency. When Ronald Reagan took office in 1981 at the age of 69, he became the oldest president to be inaugurated at that time. During his second term, which began when he was 73, questions about his age and cognitive abilities intensified.” (Jul, MSNBC)
“How the candidates, voters and media react to age and perceived ability will play a key role in determining the years ahead. Ageism and ableism are key actors in a drama played out on the highest stage, for the highest stakes.” (Jul, Disability Debrief)
Barriers to the Ballot: “From Indiana to Texas, barriers at the polls, such as a lack of ramps and uneven surfaces, still hinder — and often prevent — people with disabilities from voting.” (Jul, Disability Justice Project)
What It’s Like to Run for Office as a Young, Blind Person Disability rights are at the heart of Madeline Ryan Smith’s campaign against a 20-term GOP incumbent. (Jul, Mother Jones)
Disability Advocates Are Winning the Right to Plain Language Voting on proposed ballot measures. (Jun, Mother Jones)
Her speech using a voice app made history in Congress “Some people with disabilities hailed Rep. Jennifer Wexton’s use of text-to-speech technology, but say there is work to be done to advance representation for those who communicate differently.” (May, the 19th)
Texas disabled advocates hold vigil at Governor's Mansion:
“For eight years, members of the disability rights group ADAPT of Texas and their sister organization, the Personal Attendant Coalition of Texas, have been trying to get a meeting with Abbott, who uses a wheelchair. Their chief concern is the pitifully low pay for caregivers, which leaves some disabled Texans without the in-home care they need to prepare meals, use the bathroom, shower and handle other daily tasks so they can safely live at home.” (May, Austin American Statesman)
Churches Don’t Have to Be Accessible. That’s Bad News for Voters. “In 2024, millions of Americans will vote at ADA-exempt religious sites. What if you’re disabled?” (Apr, Mother Jones)
Voting Experiences Since the Help America Vote Act: Perspectives of People with Disabilities. Turnout and accessibility have both increased. (Apr, Election Assistance Commission)
For Those With Stutters, Trump Mocking Biden's Stammer Is Frustratingly Familiar (Mar, Huffpost)
Southern Voters Agree Disabled People Have Inclusivity in Their Local Community but Face Discrimination When It Comes to Interacting With Law Enforcement. (Feb, New Disabled South)
What We Lose by Armchair Diagnosing Biden and Trump
“It is appropriate for people to judge Biden and Trump by their actions. How either mishandled classified documents could be a dealbreaker. How either handles foreign policy, like unconditional funding to the Israeli government, could be a dealbreaker. Trump calling neo-Nazis ‘very fine people’ and then defending it a few years later can also be a dealbreaker. But associating supposed bad actions with age, and aging-related health issues, can lead to these conditions being further stigmatized.” (Feb, Mother Jones)
Canvassing with a Disability: Disabled Political Leaders Share their Best Practices:
“Political campaigns are not one size fits all though. After coming to terms with the inherent inaccessibility, I challenge you to create a non-traditional canvassing plan that meets your needs personally and politically. ” (Jan, Disability Victory)
How Disabled People Are Building Political Power (2023) Non Profit Quarterly
Lawmakers With Disabled Children Find Common Ground in Divided Congress “Members of Congress who have children with disabilities have bonded over that shared experience, despite vast political differences and broader polarization.” (2023, New York Times)
Plain Language Policy Dashboard “The dashboard breaks down complex legislation into plain language, making it easier to understand and making it more accessible. The goal of this dashboard is to have plain language versions of bills in states across the Southern United States.” (2023, New Disabled South) See also further background on the dashboard.
Disabled people are underrepresented in politics. A new organization aims to change that: “Disability Victory will start training the first cohort of disabled people who want to run for office in early 2024.” (2023, The 19th)
Voters with disabilities face unaddressed barriers to the ballot “People with disabilities had a 20 percent likelihood of having difficulties voting in-person, compared to 6 percent for people without a disability.” (2023, The 19th)
Sen. John Fetterman Points Out 1 Huge Benefit Of Being Disabled
“It really made me a fully more empathetic person,” Fetterman said. “And I never thought about captioning before I had the stroke. And now I realize I have to be an advocate for anyone with a disability to have the kind of technology that allows them to fully participate in society.” (2023, Huffpost)
The Majority of Polling Places are Inaccessible. A Disabled Voter Bill of Rights Could Change That. (2023, In These Times)
New Organization Aims To Make Running For Office Accessible To Disabled Candidates “Disability Victory, is one of a new generation of disability campaigns — founded and run by people with disabilities, focused on activism, and intersectional across the full range of constituencies and marginalized communities.” (2023, Forbes)
How a Senate aide and her guide dog made Capitol Hill more accessible for all. (2023, The 19th)
The candidates with disabilities who won their political positions in 2022. (2022, Respect Ability)
New Voting Laws Add Difficulties for People With Disabilities: “Restrictions in several states on mail-in voting are sending more people with disabilities to the polls. What they find isn’t always easy to navigate.” (2022, New York Times)
What does fair and equal media look like with a disabled politician? On properly accommodating John Fetterman. (2022, MSNBC)
Disabled Community Calls Out Ableism In Coverage Of John Fetterman and the focus that coverage put on his use of closed captions. (2022, Huffington Post)
The Right to Be Involved in Politics on the barriers persons with intellectual disabilities face and work done to protect their right to do so. (2022, HPOD)
US voters with disabilities face maze of new restrictions. (2022, the Guardian)
Politicians With Disabilities Are Rare Because of Structural Barriers and discrimination. (2022, Teen Vogue)
Why Vice President Kamala Harris mentioned her blue suit at a disability rights meeting a great set of reflections on the importance to give visual descriptions. (2022, 19th News)
5 Disability Issue Questions To Ask State And Local Midterm Election Candidates (2022, Forbes)
Wisconsin voters with disabilities say their right to vote is at risk (2022, NPR)
in Louisiana Disabled people face GOP pushback in bid to study voting access (2022, Louisiana Illuminator)
Voters with disabilities find barriers in new voting and election laws.
“2020 was probably the most accessible election we’ve seen,” said Michelle Bishop, the voter access and engagement manager at National Disability Rights Network. “We made a lot of changes in response to Covid, which also happened to be best practices for making voting more accessible for people with disabilities. But we are still in the period of pushback to all of those positive changes.” (2022, Vox)
Reflections on the 6th January Insurrection attempt includes a condemnation of people involved using disability to try to get off criminal charges: including the so-called QAnon Shaman attempt to invoke autism. (2022, AAPD)
The Ignominious Deceits of Congressman Cawthorn ”Representative Madison Cawthorn has misled the public about training for the Paralympics, just as he misrepresented his education and business history.” (2022, The Nation)
Accessible Voting a tool to search and find accessible voting options across 50 states. (2022) See more on a blog by Microsoft.
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Relationships, Sex and Reproductive Rights
Everything No One Tells You About Parenting a Disabled Child a review of the book which is “a candid and heartfelt exploration of parenting a disabled child, aiming to provide support and solidarity to others in similar situations.” (Jul, Diversability)
Today, ‘disability justice is reproductive justice’ — but that hasn’t always been the case. “The new Disability Reproductive Equity Act marks a new chapter in disability history, where more organizations are willing to work together on reproductive rights and justice issues.” (May, the 19th)
'Disability Intimacy' starts a long-overdue conversation.
“In the end, what we readers ask of ourselves is what counts. Whom do we allow ourselves to desire, and why? Toward whose stories do we gravitate, and whom do we leave in the margins? How will we expand our own worldview?” (Apr, Los Angeles Times)
Oregon took these children away – then used their parents’ low IQ scores to keep them apart:
“Gibson is among the 1.6 million parents in the US with cognitive disabilities, a group that faces disproportionate scrutiny from child welfare agencies. About two-thirds of state codes consider intellectual disabilities a factor for termination of parental rights.” (Mar, the Guardian)
Trans Lifeline disability and accessibility resources (Trans Lifeline)
Reproductive justice for disabled people post-Dobbs: A call-to-action for researchers (2023, Disability and Health Journal)
Inside the audio pornography boom that is revolutionising desire Feature on Press Play, Turn On: “From transgender and disabled performers creating their own erotica to the mum whose sexy voice-acting was interrupted by her kids, meet the podcaster diving into aural sex content” (2023, the Guardian)
How I Really Feel About Sex Work and Disability as a Disabled Client. (2023, Andrew Gurza)
How Accessible Sex Ed Helps Young Adults With Developmental Disabilities Form Healthy Relationships. Less than half of students getting disability services receive any reproductive health instruction. (2023, Mother Jones)
The Unique Joys and Challenges of Queer Disabled Relationships “Relationships between two disabled people can offer a profound level of mutual care and understanding.” (2023, Them)
Seeking a Lover, Not a Nurse “Disability shouldn’t make someone undesirable or impractical as a romantic partner.” (2023, New York Times)
‘Why am I having to explain this?’: Seven stories of barriers to reproductive care for those with disabilities. (2023, StatNews)
Disabled Woman Seeks Marriage Equality From Social Security Administration – Files Religious Freedom and Due Process Complaint. “The law cuts off Long’s access to life-saving benefits if she marries. The complaint alleges that the law violates the Religious Freedom Restoration Act (RFRA) and the U.S. Constitution.” (2022, DREDF)
Including Disabled People in the Battle to Protect Abortion Rights: A Call-to-Action (2022, UCLA Law Review)
‘People Think I’m a Project:’ he Unique Challenges of Dating With Chronic Illness (2022, New York Times)
Giving Birth While Disabled: “A Florida mother’s child was taken from her by authorities in 2018. Now her case could change things.” (2022, The Progressive Magazine)
Rethinking Guardianship To Protect Disabled People’s Reproductive Rights (2022, Center for American Progress)
Seeking Marriage Equality for People With Disabilities “When one partner is disabled and the other isn’t, getting married could mean giving up lifesaving health care and benefits from the government.” (2022, NYT)
For a Woman in a Wheelchair, Abortion Access Was One More Challenge (2022, NYT)
Statement on the Supreme Court’s Ruling Overturning the Right to Abortion “We are more likely to be sexually assaulted. Especially people with intellectual and developmental disabilities. Some of us have complex medical conditions and pregnancy is dangerous. The government already tries to control our lives and our bodies. Disabled people need abortion.” (2022, DREDF) See also from AAPD and others.
How do people with disabilities feel about abortion? Ives-Rublee, one of the co-authors, says “I think it’s extremely important for us to expand the way we talk about the impact of having a bodily autonomy, to include abortion access, but to include all of these other issues that particularly affect the disability community.” (2022, 19th News)
Reproductive Justice for Disabled Women: Ending Systemic Discrimination. “As access to reproductive rights continues to shrink in the United States, disabled women struggle to gain visibility around their rights and needs.” (2022, American Progress)
Sex Workers and Persons With Disabilities: "Persons with disabilities are often taught by society to feel guilty or ashamed of asking for accommodations – seeing a sex worker may overcome that by explicitly focusing on the client’s needs and abilities." (2022, Psychology Today)
Book review of Eradicating Deafness? Genetics, Pathology, and Diversity in Twentieth-Century America. (2022, H-Disability)
What’s Next In ‘Marriage Equality’ For People With Disabilities?’ (2022, Forbes)
I’m Thankful Every Day for the Decision I Made After My Prenatal Tests
"Done right, prenatal testing could allow parents to prepare well for the birth of their children. But without broad social acceptance of people with disabilities, without a medical establishment that conveys the positive social situations of many people with disabilities, and without funding for accurate and up-to-date information in the face of a prenatal diagnosis, more and more women will face decisions about their pregnancies without the support they deserve." (2022, NYT)
Disability-inspired Valentines Cards "The illness may be chronic but together we're iconic" (2022, Squeaky Wheel on twitter)
Forced Sterilization of Disabled People in the United States: "Laws allowing forced sterilization exist in 31 states plus Washington, D.C." The latest were passed in 2019. (2022, NWCL)
With Roe v. Wade overturned, disabled people reflect on how it will impact them (2022, NPR) See also the dire cost of forced birth for people with disabilities (Huffington Post).
We Talked To People Living With Disabilities About Sex And Here's What They Had To Say (2021, BuzzFeed)
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Space Exploration
Zero gravity, equal opportunity: How disabled astronauts are rewriting the rules in space. (2023, ZME Science)
Why Aren't Disabled Astronauts Exploring Space? “Journeying into the future will require embracing disability—and recognizing its power in our changing world.” (2023, Wired)
‘You Are Not Leaving Without Us’: “AstroAccess is on a mission to make it possible for disabled people to live and work in space. By doing so, it’s making space safer and better for everyone.” (2023, GizModo)
Disabled in Space with Denna Lambert. “Denna’s experience as part of the second disabled cohort to experience zero gravity and its implications for access here on Earth, and how being a single mom to a four-year-old is sometimes like being in space.” (2023, Down to the Struts)
Making space accessible for all discussion with the team from Mission:AstroAccess on research and esting in microgravity. (2023, WMFE)
AstroAccess Successfully Completes First Weightless Research Flight with International Disabled Crew. (2022, AstroAccess)
This space company wants to help people with disabilities become astronauts “So often we make design decisions up front that are exclusionary to entire segments of the population. That’s why I’m so excited about space. Space, to me, is a blank canvas.” and “NASA proved that deaf space flight participants would be more adaptable to the foreign gravitational environments, and yet there has never been a deaf astronaut.” (2021, The Hill)
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Sport and Paralympics
Four U.S. Paralympians disciplined for online comments about teammate “Decorated swimmer Jessica Long was among those barred from the Closing Ceremonies in Paris after questioning the disabilities of fellow athlete.” (Sep, The Washington Post)
The Trials of a Paralympian Whose Disability Doesn’t Always Show Anonymous online accusations that Raleigh Crossley exaggerated the disability that qualified her for the Paralympics:
“It is a conundrum: The better she swims, the more suspicion and accusations come her way. How do you prove a disability to people who cannot see it?” (Aug, New York Times)
You Won’t Believe These 5 New Paralympic Sports! “Showering while disabled is a workout, so it’s no surprise that it’s also a sporting event.” (Aug, Squeaky Wheel)
A football helmet for deaf and hard of hearing quarterbacks unveiled by AT&T and Gallaudet University. “It allows a coach to call a play on a tablet from the sideline that then shows up visually on a small display screen inside the quarterback’s helmet.” (2023, ABC News)
These Groups Are Making Skiing More Inclusive. (2023)
How the NFL avoids paying disabled players — with the union’s help. “A system still stacked against players left broken by football.” (2023, Washington Post)
Former players sue NFL over how it handled disability benefits (2023, NPR)
Born without hands, Brandon Canesi is playing golf on his own terms. (2023, CNN)
Sheri Byrne-Haber’s on the road to the 2024 Paris Paralympics: it “begins with ableism, discrimination and archery”. (2022, URevolution)
The Hardest Part About Being a Deaf Hiker? Everyone Else. (2022, Backpacker)
Deaf Performers Were Not Included At The Halftime Show: Separate is Not Equal. See a more positive article on inclusion of deaf rappers. (2022, Access Vine)
‘I need to speak my truth’: Allegations of emotional abuse led to the resignation of the Paralympic women’s wheelchair basketball coach (2021, 19th News)
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Violence and Harassment
Disabled People Are Five Times More Likely to Experience Domestic Violence. Based on data from the Justice Department:
“People with cognitive disabilities, such as those who are autistic, are even more likely to be abused. Disabled women are also more likely to be the target of such violence than disabled men.” (Sep, Mother Jones)
Gun Violence Touches Nearly 60 Percent of Black Americans – and Predicts Disability:
“Survey data from 3,015 Black Americans linked specific disabilities ranging from trouble concentrating to difficulty dressing or bathing with exposure to various types of gun violence: being shot, being threatened with a firearm, knowing a shooting victim, and witnessing a shooting or hearing of one nearby.” (May, Rutgers)
Maine’s deaf community reeling after deaf victims among Lewiston dead. (2023, Washington Post)
Michigan Transphobic Attack Leaves Trans Disabled Man Injured “Andrew Blake-Newton reported a group of people in a van shot him with pellet gun bullets and hurled transphobic slurs at him.” (2023, Huffpost)
Police Brutality: A (Speech) Disability Concern. (2023, Communication First)
Paralyzed by Gun Violence, They Seek Solace From Other Survivors. “In one city, a support group that includes people who spent time in the same trauma ward offers a way to cope.” (2023, New York Times)
2022 Anti-Filicide Toolkit. Parents murdering their disabled children is reported in the media as "justifiable and inevitable" and this contributes to a cycle of violence. (2022, Autistic Self Advocacy Network)
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