United States
This page features the news on disability from United States in the Debrief Library. See also news from other countries.
Contents
Accessibility and Design
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Overview
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.” (Dec, Alex Haagaard)
Why Do People With Disabilities Have to Sue To Get Accessible Sidewalks? (Nov, Streetsblog USA)
More than 30 years after ADA, cities fail to be accessible (Jun, ABC 15)
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.” (Mar, Aljazeera)
‘Where the bats hung out’: How a basement hideaway at UC Berkeley nurtured a generation of blind innovators (Mar, Stat)
Accessible NYC A summary of what the city authorities are doing for accessibility and inclusion. (links to pdf, NYC)
Housing
Disability Justice Isn’t Possible without Housing Justice (Mar, Urban Institute)
Designing for Disabilities: How to Pair Luxury With Access (Dec, House Beautiful)
Biden Administration Releases Millions For Disability Housing. (Aug, Disability Scoop)
Ageing
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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!” (Jan, Generations)
How America’s ageism hurts, shortens lives of elderly. (Aug, Harvard Gazette)
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.” (Jul, Institute for Healthcare Improvement)
America Was in an Early-Death Crisis Long Before COVID (Jul, The Atlantic)
Assistive Technology
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A Bride’s Prosthesis Made Not to Blend In, but to Shine. (Jan, New York Times)
This researcher builds ‘cool stuff for blind people.’ He’s also trying to help transform society. (Oct, PBS)
3D printing allows blind chemists to visualise scientific data. (Aug, Chemistry World)
Elderly and Disabled Assistive Devices Market Size report by Acumen (Jul, 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.” (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)
Black Lives Matter and Racial justice
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Black Disability Justice Syllabus. “An opportunity to honor the legacies of Black disabled artists, thinkers, activists, and leaders and a tool for future work.” (Feb, Sins Invalid)
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.” (Feb, Journal of Applied Research in Intellectual Disabilities)
12 Black Disabled Activists and Advocates You Need to be Following (Feb, World Institute on Disability)
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 [...] his 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.” (Duke University Press) See an interview with the author on Essence.
Racial Justice and Disability Justice: The Complex Journey (Aug, Non Profit Quarterly)
People of color and the disability rights movement: a short history. 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.” (Jul, URevolution)
Racial disparities persist for disabled youth in spending on services for California children and teens with developmental disabilities. (May, Los Angeles Times)
How Disability Exacerbates Anti-Blackness: Anti-Blackness and Ableism Led to Ryan Coogler's Arrest (Mar, ARD)
Discussion of the book Mark of Slavery and its exploration of the intersection of slavery and disability. (Feb, Disability Insider)
Asian Americans with disabilities are often overlooked. A new youth-led group aims to change that. (Jan, NBC News)
COVID-19
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Impact
How Masking Changed My Experience of Being Deaf: “The pandemic forced me to communicate differently.” (Sep, The Atlantic)
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.” (October, Disability and Health Journal)
COVID continues to hit nursing homes harder, “Cases are surging everywhere, and nursing home residents remain more likely to face severe illness and death.” (Jul, 19th News)
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." (Jan, Journal of Occupational Rehabilitation)
"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., Feb, American Progress)
Response
What to Do if You Have COVID A guide for preparing for illness, preventing spread to others, managing symptoms, and recovery (Jan, People's CDC)
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.” (Sep, MSNBC)
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.” (Sep, The Atlantic)
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.” (May, Journal of Poverty)
The White House releases a plan to help people who are especially vulnerable to Covid-19. (Feb, NYT)
Disabled Deaths Are Not Your “Encouraging News” '“Comorbidities” is a weaselly, cruel, violent word.' (Jan, Disability Visibility Project)
A letter to the health authorities responding to CDC comments that had referred to the deaths of those 'unwell to begin with': "The public health response to COVID-19 has treated people with disabilities as disposable." See more on Huffpost (link to pdf, Jan, coalition of disability organizations)
High-Risk Pandemic Stories: A Syllabus. "We are not alone" (Jan, Disability Visibility Project)
Biden and CDC's Covid-19 variant guidelines "have disabled people feeling left for dead" (Jan, MSNBC)
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 (Dec, The Hill)
Living with COVID
Long Covid disabled them. Then they met a 'broken' Social Security disability process. (Mar, 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”. (Nov, Experiment Publishing)
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.” (Sep, The Atlantic) See also Ed Yong's reflections on reporting on long COVID and other chronic illnesses in a sensitive way.
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.” (Sep, the Guardian)
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. (Aug, CNBC)
Black Covid long-haulers say doctors dismissed their symptoms, so now they’re relying on one another for support. (Aug, NBC News)
Biden's long Covid plan is a good start. But it needs to go further. (Aug, Stat)
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.” (Jul, TCF)
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],” (Jul, NPR)
Long Covid Is Showing Up in the Employment Data (Jun, Washington Post)
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". (Mar, 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,” [...]'
'Beyond equitable access to treatments, the people I spoke with mostly want structural changes—better ventilation standards, widespread availability of tests, paid sick leave, and measures to improve vaccination rates. Above all else, they want flexibility, in both private and public spaces. That means remote-work and remote-school options, but also mask mandates for essential spaces such as grocery stores and pharmacies [...] But in terms of what individual people can do for them, the most common request I heard was: Just have a heart. Regardless of your own choices, don’t jeer at us for being mindful of our higher risks, and definitely don’t tell us that our lives are worth less.' (Feb, The Atlantic)
At-Home Coronavirus Tests Are Inaccessible to Blind People: “It’s your personal health information, you should be the first to know." (Jan, NYT)
What Does ‘Living With Covid-19’ Mean For Disabled And Chronically Ill People? A useful balanced view of pessimistic and hopeful outcomes. (Dec, Forbes)
Civil Society and Community
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Borealis Philanthropy and Ford Foundation Launch $1 Million Disability x Tech Fund to Advance Leadership of People With Disabilities in Tech Innovation. (Feb, Ford Foundation)
Autism research at the crossroads “The power struggle between researchers, autistic self-advocates and parents is threatening progress across the field.” (Jan, Spectrum)
What I learned from the Generation of Disabled Activists Who Came After Me (Dec, 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. (Jul, Respect Ability)
5 Reasons Why Disability Activism Is Still Hard One is that “Like the rest of society, disabled people are divided and polarized” (May, 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. (Mar, Disability & Philanthropy Forum)
Climate Crisis and Environment
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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.” (Jan, Spokesman-Review)
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.” (Aug, WNYC Studios)
It’s not just heat stroke. Extreme temperatures pose special risk to people with chronic illness (Jul, Statnews)
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.” (Jun, FoodPrint)
Ageing and the Climate Crisis aging (Jun, ASA Generations)
In best of times, New Orleans is hard on people with disabilities. In hurricanes, it's deadly. (Jun, Nola)
Severe weather can mean life or death for people with disabilities. (May, Fox9)
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.” (May, 19th News)
Ensuring the Safety of People With Disabilities During Climate Change (Apr, Santa Clara University)
Communication and Language
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Overview
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” (May, New Yorker)
Sign Languages
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?” (Feb, Languages)
Native American sign language arrives at the Super Bowl. (Feb, Washington Post)
How ASL performer Justina Miles stole the show at Super Bowl LVII. (Feb, CNN)
Why Sign Language Was Banned in America part of a video series exploring sign language. (Oct, Storied, PBS)
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.” (Jan, New York Times)
How Deaf and Hearing Friends Co-Navigate the World: “friendterpreting” and the everyday ways people communicate. (Aug, Sapiens)
The Need For Black Sign Language Interpreters In Hip-Hop (Jul, Okayplayer)
How Sign Language Evolves as Our World Does. (Jul, NYT)
Culture, Entertainment and Media
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Overview
Performance by Gaelynn Lea a musical welcome to Microsoft's Ability Summit. (Mar, MSFT Enable)
A review of the book 'Turn on the Words!: Deaf Audiences, Captions, and the Long Struggle for Access' (Jan, H-Net)
An Art in America edition dedicated to Disability Culture. (Oct, Art in America)
‘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.” (Aug, NYT)
Why Beyoncé and Lizzo Changed Same Lyric on Their New Albums. (Aug, 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.
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” (Jul, the Guardian)
As Lizzo was called out for ableism, many Black disabled people felt overlooked. (Jun, NPR) See also on BBC
Disability in Theatre: Strategies for Combating Ableism by Meeting Actors’ Access Needs. (Apr, On Stage Blog)
How The Grammys Got Accessibility Right, And What They Could Have Done Better - An Interview With Lachi (Apr, Forbes)
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?” (Mar, 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.
Review of ‘True Biz,’ by Sara Novic (Mar, NYT) See also a discussion on Power, Privilege, and Love in a Residential School for Deaf Students (Electric Literature).
Sofía Jirau Makes History as the First Victoria’s Secret Model With Down Syndrome (Feb, Glamour)
Disability Justice from A to Z A Coloring Book For Our Communities (Jan, Sins Invalid)
Beauty & Disability The Entrenched History of Ableism in the Beauty Industry (Dec, World Institute on Disability)
TV and Film
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.” (Mar, Variety)
A year after ‘CODA’ made Oscars history, Deaf people are waiting for more inclusive stories. (Mar, GBH News)
‘Sometimes you felt excluded’: How debut director Marlee Matlin righted past wrongs (Jan, Los Angeles Times)
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. (Jan, Respect Ability)
'I Didn't See You There' Is a Disability Film Unlike Any Other - The Atlantic (Jan, The Atlantic) Also on the Guardian.
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.” (Dec, Variety)
Captioned Video Accessibility. “Stranger Things” Captions, a Fascinating Case Study: “Captions are not the place to exercise creativity”. (Jul, Meryl Evans)
‘Best Foot Forward’ Is a Story About, and by, People With Disabilities (Jul, New York Times)
Accurate Disability Representation In Mass Media: 8 Powerful Film and Television Performances By Actors With Disabilities. (May, 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.” (Mar, Bric TV)
‘As We See It’ Is Not a Typical Portrayal of Autism starring three leads who are on the autism spectrum (Jan, NYT)
Ahead of the Golden Globes Shining a Spotlight on Disability-Inclusive Nominations (Jan, Respect Ability)
Media
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.” (Dec, Current)
Representation in media: Closing the inclusion gap for people with disabilities (Jul, Nielsen)
Language, Please: a style guide for journalists that includes a section on Disabilities, Neurodiversity, and Chronic Illness (May, Language, Please)
Disability Matters: A toolkit for newsrooms to better serve the disability community (Apr, Reynolds Journalism Institute)
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." (Feb, NYT)
Short video campaign Spotlights Black Disabled Creatives (Feb, Respect Ability)
Clothing and Fashion
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?” (Nov, Yes!)
I Never Loved Fashion— Until I Went Blind. “On styling myself for a whole new life and the hope that came with it.” (Oct, Cosmopolitan)
A Double Take on Adaptive Fashion at NYFW, From Open Style Lab. (Sep, Vogue)
Data and Research
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Overview
Prevalence of disabilities among older Americans is much lower than a decade earlier (Feb, 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.” (Oct, 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.” (Aug, HealthAffairs)
Disability Data Snapshot: Asian Americans and Pacific Islanders. (Jul, U.S. Department of Labor Blog)
Research
A symposium on Capitalism & Disability. (Oct, LPE Project)
Open access to research can close gaps for people with disabilities (Sep, Stat News)
Digital Accessibility and Technology
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Overview
Unlocking the Virtual Front Door An Examination of Federal Technology’s Accessibility for People with Disabilities, Older Adults and Veterans (Link to pdf, Dec, 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., Apr, Kelly Mack)
Fulfilling our commitment to accessibility and inclusion reports from a recent "digital forum" (Feb, Microsoft Industry Blogs)
Artificial Intelligence
Denied by AI: How Medicare Advantage plans use algorithms to cut off care for seniors in need. (Mar, Stat)
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.” (Mar, AP News)
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.” (Aug, The Daily Beast)
Ableism And Disability Discrimination In New Surveillance Technologies. How new surveillance technologies in education, policing, health care, and the workplace disproportionately harm disabled people (May, CDT)
The Biden Administration warns that Hiring algorithms, and artificial intelligence risk violating Americans with Disabilities Act (May, NBC News) See the detailed guidance, from the Equal Employment Opportunity Commission and a summary from ADA.gov. Also on Forbes and Bloomberg Law.
In Our Tech Reckoning, People with Disabilities are Demanding a Reckoning of their Own (Jan, Tech Policy Press)
How AI is being used to improve disability employment (Jan, Microsoft)
Online Accessibility
How Accessible are Dating Apps? “these services offer little to no recourse for individuals who may have visual impairments.” (Jul, Accessibility.com)
For people with disabilities, AI can only go so far to make the web more accessible (May, 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.” (Apr, 19th News)
How to Create Accessible & Inclusive Digital Platforms for Those With Mental Health Disabilities (Feb)
App & Web Accessibility Lawsuits Break Records (Dec, UsableNet)
Technology
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." (March, Just Tech)
Social Media
Senator Markey Demands Musk Reinstate Twitter’s Accessibility Team, Online Features for Users with Disabilities. (Feb, 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” (Jan, Prism)
Content creation can be a lifeline for disabled creators —but it can also put their mental and physical health at risk. (Oct, Passionfruit)
Disaster Risk Reduction and Crisis Response
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How California’s emergency plans fail disabled communities (Jan, High Country News)
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.” (Jan, E&E News)
Many of Hurricane Ian’s Victims Were Older Adults Who Drowned. (Oct, 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. In addition, the study illuminates the short-term impacts of Winter Storm Uri and its long-term consequences, which some participants were still negotiating a year later.” (Sep, Natural Hazards Center)
New Interactive Maps Help Inform Disability-Inclusive Disaster Planning (Oct, Mathematica)
Economics and Social Protection
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Overview
How to Embed a Disability Economic Justice Policy Framework in Domestic Policy Making. (Jan, The Century Foundation)
Voices of Disability Economic Justice a series led by disabled writers. (Nov, TCF)
New Rule Would Expand Student Debt Relief for Disabled Borrowers (Aug, TCF)
Social Protection
After ‘losing my life’ caring for a sick partner, a professor examines the U.S. caregiver crisis. (Feb, Stat News)
Social Security uses obsolete job titles to deny benefits to disabled applicants. (Dec, 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.” (Dec, Center for American Progress)
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” (Dec, Washington Post)
‘Impending Intergenerational Crisis’: Americans With Disabilities Lack Long-Term Care Plans. (Nov, Kaiser Health News)
A disability program promised to lift people from poverty. Instead, it left many homeless. (Oct, Salon)
Inside the Kafkaesque Process for Determining Who Gets Federal Disability Benefits. (Aug, Mother Jones)
‘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.” (Aug, Politico)
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. (Apr, Brown Political Review) See more on how policy punishes disabled people who save more than $2,000 from Full Stack Economics.
The Impacts of Disability Benefits on Employment and Crime Discontinuing benefits for children with disabilities as they become adults “increased criminal charges substantially“. (Apr, NBER)
Data breach may have exposed personal information of Oklahomans on disability aid list (Mar, The Oklahoman)
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." (Jan, Prospect)
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, Dec, State of California)
Tax authorities raise limit allowed benefit recipients in saving accounts (Jan, Disability Scoop)
Education and Childhood
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Overview
Supreme Court unanimously rules for deaf student in education case. (Mar, PBS)
Oklahoma votes down ban of corporal punishment on disabled children. (Mar, Washington Post)
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.” (Feb, Yahoo! News)
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.” (Feb, Texas Public Radio)
Education Department Finds that Most States Repeatedly Fail To Meet Special Ed Responsibilities (Jul, Disability Scoop)
New Guidance Helps Schools Support Students with Disabilities and Avoid Discriminatory Use of Discipline (Jul, Department of Education)
Surveillance Tech Is Wrongly Accusing Disabled Students of Cheating on Tests (Jun, Truthout)
Reflections on Disabled Students & Active Shooter Preparedness “How can we use anti-ableism in all aspects of gun violence prevention?” (May, Crip News)
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. " (Feb, Knock LA)
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. (Feb, Wired)
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, Adrean Clark)
Higher Education
‘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.”
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.” (May, Washington Post)
Students push for Persons with Disabilities Cultural Center (Feb, Yale News)
Employment, Business and Work
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‘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” (Mar, the Guardian)
Women of Color Lose Billions Each Year a report on the negative effects of job segregation on women in the workforce and its impacts on women of color and women with disabilities:
“The 10 occupations employing the most disabled women pay, on average, $41,200 per year – $15,800 less than the average annual wage across the 10 most-common occupations for non-disabled men. If that gap were closed, disabled women in these 10 occupations would make $9 billion more in a year.” (Mar, National Partnership for Women and Families)
Disability Justice—in the Workplace (and Beyond) (Feb, NPQ)
Hearing Disabilities in the Workplace and the Americans with Disabilities Act. (Jan, U.S. Equal Employment Opportunity Commission)
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.” (Jan, New York Times)
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.” (Dec, 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.” (Nov, ProPublica)
For Disabled Workers, a Tight Labor Market Opens New Doors (Oct, New York Times)
Federal agencies recommend strategies to expand disability employment in state and local government. (Aug, Disability Scoop)
Supporting Employees with Long COVID: A Guide for Employers (EARN and JAN)
Twenty-Two Cents an Hour a book by Doug Crandell on Disability Rights and the Fight to End Subminimum Wages (Apr, Cornell University Press)
Disability Representation on Boards Is Up, Yet Inclusion Lags. (Jul, Bloomberg Law)
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”. (Aug, Forbes)
Including Disability in Diversity, Equity & Inclusion Priorities: Building A Maturity Model (Jun, AskEARN)
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. (Jul, Routledge)
Making the ‘Business Case for Diversity’ Can Backfire with Underrepresented Groups by leading to a lower sense of belonging. (Jun, Yale Insights)
7 Resources for People With Disabilities to Break Into Software Engineering Careers (Apr, ContainIQ)
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.” (TCF) See also 7 Facts About the Economic Crisis Facing People with Disabilities in the United States.
Brand activism floods 'disability awareness' holidays. But too often, it ends there as well. (Mar, Business Insider)
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.” (Mar, The City)
How Managers Can Support Employees With Long COVID (Mar, MIT Sloan)
New Microsoft program connects recruiters with neurodivergent talent on a Neurodiversity Career Connector job portal. (Mar, HR Brew)
The Rise In Telework During The Pandemic, An Opportunity For Accessibility And Inclusion (Jan, Forbes)
Adobe Releases Results Of Study Looking At Recruiting, Retaining, And Supporting Disabled Workers See also the adobe study results. (Dec, Forbes)
U.S. Department of Labor eliminates exemption for federal contractors with disabilities to be paid less than the minimum wage (Nov, Council of State Governments)
Gender Equality and Women with Disabilities
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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.” (Mar, Disability & Society)
A federal appeals court finds that gender dysphoria is protected under the Americans with Disabilities Act (ADA). (Aug, CT Mirror)
Health
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Overview
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.” (Mar, Vice)
The disability rights fight intersecting the drug pricing debate. Discussing a bill to ban use of Quality-Adjusted Life Years. (Feb, Axios Pro)
Why addiction should be classified as a disability. “How Treating Addiction as a Disability Could Transform Treatment” (Feb, Slate)
People With Disabilities Deserve Better Health Care. We All Do. (Feb, Undark)
Sickle Cell Cure Brings Mix of Anxiety and Hope (Jan, New York Times)
National Institutes of Health advances landmark recommendations on disability inclusion and anti-ableism. (Jan, Statnews)
Revenge of the gaslit patients: Now, as scientists, they’re tackling Ehlers-Danlos syndromes (Dec, Stat News)
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. (Nov, Washington Post)
Doctors Are Failing Patients With Disabilities “Decades after the ADA passed, medical care still isn’t accessible.” (Nov, The Atlantic)
Mistreatment of physicians with disabilities is widespread, study finds. (Oct, Medical Economics)
Disability & Health In 10 Exhibits: Themes from Health Affairs’ October 2022 Issue. (Oct, Health Affairs)
‘I Am Not The Doctor For You’: important research on Physicians’ Attitudes About Caring For People With Disabilities (Oct, Health Affairs) Coverage in New York Times.
At last, medical guidelines address care for adults with Down syndrome. (Jul, Washington Post)
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.”’ (May, Fortune)
Key groups overlooked in bias training for doctors (May, The Boston Globe)
Committing to Health Equity for All, Including People with Disability (Apr, Mathematica)
Severe maternal morbidity and other perinatal complications among women with disabilities. (Apr, Paediatric and Perinatal Epidemiology)
Ageism: Signs, Causes, and How to Address It (Mar, Healthline)
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.” (Nov)
A new book, Deaf Rhetoric “An Ecology of Health Communication” (Jan, Spriner)
People with disabilities left behind by telemedicine and other pandemic medical innovations. (Mar, CNN)
Why billions in Medicaid funds for people with disabilities are being held up (Mar, NPR)
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." (Jan, Journal of Medical Education and Curricular Development)
'I am a medical student with significant hearing loss. ': Here’s what the pandemic has been like for me and others with my disability (Jan, AAMC)
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.' (Dec, JAMA Network)
Pregnancy among Women with Physical Disabilities: Unmet Needs and Recommendations (Jan, Brandeis)
Food Security and Nutrition
Why the Formula Shortage Is Also a Disability Rights Issue (Yes Magazine)
History and Memorial
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Overview
Google Doodle Spotlights Kitty O'Neil, Deaf Stuntwoman and Daredevil, on her 77th birthday. (Mar, CNET)
Book review of 'Public Hostage, Public Ransom: Ending Institutional America' an autobiography by William Bronston. (Mar, H-Disability)
'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,” (Jan, Wisconsin State Journal)
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.” (Feb, H-Disability)
‘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”. (Jan, the Guardian)
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.” (Dec, Monash)
Disability Dialogues a book on the “Advocacy, Science, and Prestige in Postwar Clinical Professions” (Dec, Johns Hopkins University Press)
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.”
Landmark disability rights figure Lois Curtis dies. (Nov, NPR) See more about her legacy on 19th News.
Disability Culture So Far: “A Movement in Milestones” – highlights from disability arts. (Oct, 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”. (Aug, New York Times)
The Untold Origins of the Black & Blind Musician (Video feature, Jul, PBS Origins)
Crip/Mad Archive Dances: Arts-Based Methods in and out of the Archive (May, Theatre)
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.” (Jul, Duke University Press)
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” (Jul, Slate)
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” (Jun, Just Tech)
Google Doodle Honors Disability Rights Activist Stacey Park Milbern (May, CNET)
Inside the Pentagon’s shameful effort to draft mentally disabled men to fight in Vietnam (May, Task & Purpose)
Harriet Tubman’s Disability and Why it Matters (Feb, Ms Magazine)
The Helen Keller Exorcism. Brilliant rollercoaster-ride of an episode, remembering Helen Keller and her myths today. (complete with transcript, Mar, Radiolab) See also a feature on Helen Keller's Legacy (Teen Vogue).
Neil Marcus, Whose Art Illuminated Disability, Dies at 67 See more about Neil in the introduction and the last newsletter. (Dec, NYT)
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.” (Jan, Letters of Note)
Remembering Judy Heumann
Judy Heumann: The Legacy of Leadership. “It is often said that true leaders don’t build followers, they build more leaders.” (Mar, U.S. Department of Labor Blog)
“All Voices Matter” Remembering Judy Heumann with tributes from Communication FIRST. (Mar, Communication First)
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.” (Mar, Steve Way's Substack)
Obituary: Judy Heumann, disability rights activist, dies at age 75. (Mar, AP News)
Because she made a fuss, Judy Heumann made everyone's life better segment from Rachel Maddox. (Mar, MSNBC)
Judy Heumann’s life is a testament and a reminder personal tribute by Rebecca Cokley. (Mar, CNN)
What the next generation of disability activists can learn from Judy Heumann. (Mar, WBUR)
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.” (Mar, The White House)
Remembering the mother of the disability rights movement. An interview with Sandy Ho. (Mar, Slate)
Remembering Judy Heumann: tributes from those that knew her, introduced by Jim LeBrecht. (Mar, International Documentary Association)
Humanitarian, Migrants and Refugees
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Overview
Refugees with Disabilities Struggle to Join the Workforce (May, Chicago Monitor)
Migration
U.S. removes Trump-era barriers to citizenship-test waivers for disabled immigrants (Oct, NPR)
Indigenous People and Minority Communities
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Understanding Disabilities in American Indian & Alaska Native Communities, a toolkit to increase awareness and knowledge. (Mar, NICOA)
Institutions and Deinstitutionalization
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Why Nursing Home Reform Is Finally Coming (Dec, Next Avenue)
Unsafe: Abuse and neglect of Arizona's most vulnerable can happen anywhere (Nov, Kjzz)
At a Remote Mental Health Facility, a Culture of Cruelty Persists Despite Decades of Warnings. (Sep, Pro Publica)
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. (Aug, 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.’ (May, Buzzfeed News)
Justice Systems and Legal Capacity
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For Deaf People in Prison, FCC Mandates Videophone Call Access. (Mar, 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.” (Jan)
House Approves Ban On Electric Shock Devices For Those With Developmental Disabilities. (Jun, Disability Scoop)
Lawsuit argues the Americans with Disabilities Act should apply to transgender rights (May, Washington Post)
A discussion about the relationships between law, political economy and disability (LPE Project)
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. (Jan, Undark)
Lived Experience and Opinion
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Imani Barbarin: My Experience As A Black Woman With Cerebral Palsy I Didn’t Think I’d Make It Into Adulthood (Mar, Refinery29)
Disability Is Always Someone Else’s Problem Why I’m not celebrating Disabilities Awareness Month. (Mar, The Nation)
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.” (Mar, New York Times)
Sipping Dom Pérignon Through a Straw. Autobiography by Eddie Ndopu. “Reimagining Success as a Disabled Achiever” (Legacy Lit)
Five Ways to Clarify You’re (Badass) Disabled and Not (Inspirational) Disabled (Feb, Squeaky Wheel)
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.” (Feb, CNN)
How Innovation Sets Me Backwards Tech that could be enabling me is impairing me instead. (Jan, Immerse)
The Micropedia of Microaggressions - the first encyclopedia of microaggressions. (Jun)
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” (Feb, Teen Vogue)
Deaf Role Model of the Month: Pamela Molina (Jan, Deaf Unity)
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.” (Jan, Forbes)
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.” (Jan, Truthout)
'My Life Is in My Caregivers' Hands': Disability Advocate Alice Wong's Vision for a New Approach to Health Care. (Dec, KQED)
What disabled people know about making better New Year’s resolutions resolutions to do less and quit Yoga. (Dec, Washington Post)
All Sorts of Secret Treasure Feature on DeafBlind poet John Lee Clark and his debut poetry collection How to Communicate. (Nov, Poetry Foundation)
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.” (Nov, Meryl Evans)
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.” (Nov, McSweeney's)
Queer, Crip and Here: Meet blind writer Caitlin Hernandez (Oct, Washington Blade)
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.” (Sep, Refinery29)
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.“ (Oct, Eater)
What It's Like to Fall a Lot Because of My Disability “Really, I probably fall as often as you get Starbucks.” (Sep, The Mighty)
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.” (Oct, KQED)
11 Disability Rights Activists on Where the Fight for Justice Stands (Sep, Teen Vogue)
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.” (Nov, Disability Visibility Project) See an exerpt in Teen Vogue.
For 'disabled oracle' Alice Wong, rest is a radical act. (Sep, Los Angeles Times)
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.”
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.” (Aug, Lakeshore)
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.” (Aug, Not an Angry Deaf Person)
The Future Is Disabled a new book by Leah Lakshmi Piepzna-Samarasinha, Prophecies, Love Notes and Mourning Songs. (Jan, Arsenal Pulp) See an interview on Ms Magazine.
My Experience as an Immigrant and Expectant Mother with a Physical Disability. (Aug, Blogs @ Brandeis)
I’m Going Blind. This Is What I Want You to See. “It’s time to expand our definition of blindness.” (Aug, NYT)
My ICU Summer: A Photo Essay. Alice Wong's harrowing experience in the hospital system. (Aug, Disability Visibility Project) Alice is fundraising to get the resources needed to live in community.
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. (Jul, The Baffler)
Americans with Disabilities Act Turns 32 Buys a Motorcycle and Gets a Cute Pixie Cut (Jul, The Squeaky Wheel)
Observing Disability Pride Month this July (Jul, Human Rights Watch)
Selma Blair: It’s Time We Shift the Story About How Disabled People Are Represented (Jul, Variety)
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.” (Jul, Squeaky Wheel)
‘Is That Ableist?’ Good Question. (Jul, NYT)
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.” (Jul, Biopolitical Philosophy)
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?” (Orion Magazine)
In New York City, a video feature on wheelchair users, discussing adaptive sports, accessibility and inclusion. (Jun, CUNY TV)
“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.” (Jun, Inside Higher Ed)
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.” (May, NYT) The NYT page doesn't load properly for me; you can also see the film at Like Right Films.
Autism Speaks, and It’s Telling Allistics to Shut Up (Apr, Jonah Rothman)
I'm Deaf And I Have 'Perfect' Speech. Here's Why It's Actually A Nightmare. (Apr, HuffPost)
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.” (Mar, Disability Visibility Project)
After Disability Awareness, What’s Next? (Feb, 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.' (Mar, The Cut)
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. (Feb, HuffPost)
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. (Feb, NPR)
Disabilities are not binary. Why do we treat them that way? (Feb, AAMC)
Ableism Is More Than A Breach Of Etiquette — It Has Consequences (Feb, Forbes)
Q&A With Lainey Feingold, Disability Rights Lawyer on structured negotiation and "negotiating instead of suing". (Equal Entry)
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." (Feb)
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. (Feb, NCSA)
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. ", Jan, Mia Mingus)
Tina's art: "How I see the world" Art and photography from someone with Cerebral visual impairment. (Perkins)
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. (Dec, Blind Archive)
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?" (Jan, Poetry Foundation)
Reframing Entrepreneurship And Disability To Shape A New Business Culture describes the way we make changes within organizations as 'intrapreneurship'. (Dec, 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. (Jan, Talila Lewis)
Mental Health
Back to contents.
Advocates Fear The Impact Of NYC’s Involuntary Hospitalization Plan. (Dec, Huffington Post) See also an extended take on the push to expand involuntary treatment (Mad in America).
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,” (Apr, 74 Million)
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.” (May, New York Times)
Mobility, Travel, Transport and Tourism
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Overview
One Way to a Better City: Ask Disabled People to Design It. David Gissen on Designing Cities for Disability (Jan, Curbed)
Disability rights vs. snowy sidewalks: Seattle's annual conversation. (Dec, Crosscut)
Six Things Wheelchair Users Should Know About Autonomous Vehicles (Jul, New Mobility)
Biden administration to announce $1.75 billion in funding to improve rail station accessibility (Jul, CNN)
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. (Jul, The Verge) Also on NBC News.
In New York, M.T.A. Vows to Make Subways 95% Accessible. “It Will Take 33 Years.” (Jun, NYT)
Amtrak Pays $2.25 Million to Disabled People Who Were Unable to Access Train Stations (Jan, Newsweek)
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." (Jan, Washington Post)
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." (Jan, Wired)
Good to see that in NYC the pilor shared e-scooter scheme included possibility to rent wheelchairs or mobility scooters. (Jan, NYC Scooter Share)
Air Travel
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.” (Mar, The Austin Chronicle)
Gaby Assouline dies one year after being ‘thrown’ from Southwest Airlines walkway. (Jan, NY Post)
Start-up Targets Sustainable and Accessible Regional Airliner that can accommodate wheelchairs inside the cabin. (Feb, Future Flight)
Short video accompanying air travel: Flying Has Become Hell for Passengers with Wheelchairs. (Jan, Vice)
The airline passengers getting 'unacceptable' treatment. 'If I reported every incident, I'd never leave the airport' (Nov, CNN)
Ideas abound as the Department of Transport eyes wheelchairs in the aircraft cabin. (Aug, Runway Girl Network)
Embarrassing, Uncomfortable and Risky: A photo-essay feature on what flying is like for passengers who use wheelchairs. (Aug, NYT)
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. (Jul, Department of Transportation)
Policy and Rights
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What’s Next For Disability Policy? (Apr, Forbes)
Politics and Elections
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How a Senate aide and her guide dog made Capitol Hill more accessible for all. (Mar, The 19th)
The candidates with disabilities who won their political positions in 2022. (Dec, Respect Ability)
What does fair and equal media look like with a disabled politician? On properly accommodating John Fetterman. (Nov, MSNBC)
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.” (Nov, New York Times)
US voters with disabilities face maze of new restrictions. (Oct, the Guardian)
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. (Oct, HPOD)
Disabled Community Calls Out Ableism In Coverage Of John Fetterman and the focus that coverage put on his use of closed captions. (Oct, Huffington Post)
Politicians With Disabilities Are Rare Because of Structural Barriers and discrimination. (Sep, Teen Vogue)
Accessible Voting a tool to search and find accessible voting options across 50 states. See more on a blog by Microsoft.
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. (Jul, 19th News)
5 Disability Issue Questions To Ask State And Local Midterm Election Candidates (Jun, Forbes)
Wisconsin voters with disabilities say their right to vote is at risk (May, NPR)
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.” (Apr, Vox)
in Louisiana Disabled people face GOP pushback in bid to study voting access (Apr, Louisiana Illuminator)
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.” (Jan, The Nation)
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. (Jan, AAPD)
Relationships, Sex and Reproductive Rights
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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.” (Nov, DREDF)
‘Why am I having to explain this?’: Seven stories of barriers to reproductive care for those with disabilities. (Jan, StatNews)
Including Disabled People in the Battle to Protect Abortion Rights: A Call-to-Action (Oct, UCLA Law Review)
Giving Birth While Disabled: “A Florida mother’s child was taken from her by authorities in 2018. Now her case could change things.” (Sep, The Progressive Magazine)
‘People Think I’m a Project:’ he Unique Challenges of Dating With Chronic Illness (Sep, New York Times)
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.” (Aug, NYT)
Rethinking Guardianship To Protect Disabled People’s Reproductive Rights (Aug, Center for American Progress)
For a Woman in a Wheelchair, Abortion Access Was One More Challenge (Jul, NYT)
With Roe v. Wade overturned, disabled people reflect on how it will impact them (NPR) See also the dire cost of forced birth for people with disabilities (Huffington Post).
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.” (Jun, 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.” (May, 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.” (Apr, American Progress)
Book review of Eradicating Deafness? Genetics, Pathology, and Diversity in Twentieth-Century America. (Mar, H-Disability)
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." (Mar, Psychology Today)
Disability-inspired Valentines Cards "The illness may be chronic but together we're iconic" (Feb, 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. (Jan, NWCL)
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." (Feb, NYT)
We Talked To People Living With Disabilities About Sex And Here's What They Had To Say (Dec, BuzzFeed)
Resources
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Disability Justice Resource Directory evolving curation of disability justice tools, resources and best practices. (May, Creating Freedom Movements)
I was very happy to find The Squeaky Wheel: a parody disability news site - think the Onion, but for us
Space Exploration
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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.” (Mar, Down to the Struts)
‘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.” (Mar, GizModo)
AstroAccess Successfully Completes First Weightless Research Flight with International Disabled Crew. (Dec, AstroAccess)
Making space accessible for all discussion with the team from Mission:AstroAccess on research and esting in microgravity. (Jan, WMFE)
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.” (Dec, The Hill)
Sport and Paralympics
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Born without hands, Brandon Canesi is playing golf on his own terms. (Feb, CNN)
Former players sue NFL over how it handled disability benefits (Feb, NPR)
How the NFL avoids paying disabled players — with the union’s help. “A system still stacked against players left broken by football.” (Feb, Washington Post)
Sheri Byrne-Haber’s on the road to the 2024 Paris Paralympics: it “begins with ableism, discrimination and archery”. (Sep, URevolution)
The Hardest Part About Being a Deaf Hiker? Everyone Else. (Jun, Backpacker)
Deaf Performers Were Not Included At The Halftime Show: Separate is Not Equal. See a more positive article on inclusion of deaf rappers. (Feb, Access Vine)
‘I need to speak my truth’: Allegations of emotional abuse led to the resignation of the Paralympic women’s wheelchair basketball coach (Dec, 19th News)
Violence and Harassment
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Police Brutality: A (Speech) Disability Concern. (Feb, 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.” (Jan, 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. (March, Autistic Self Advocacy Network)