Fieldnotes

In March 2020, Monique Jackson was infected with COVID-19 and has been experiencing symptoms of Long Covid ever since. In her project, Corona Diary, Jackson documents her story of living with the chronic illness in the UK. She published frequent illustrations that promoted self-advocacy, community building, and helpful resources. Her…...

Covid Café was a collection of drop-in online sessions for people who are experiencing Long Covid’s lasting effects. The Covid Café is hosted by Spare Tyre a “female artist-led participatory theatre company that seeks to reflect society, challenge its prejudices and make life equal.” The sessions were hosted in the…...

Hijacking the graphic template format, Long Covid Justice posted 6 shareable valentines that center pandemic solidarity and liberation for all. They were created in collaboration with TransEquity in an effort to maintain a political framework of pandemic solidarity. They provided a wealth of resources and information. Long Covid Justice seeks…...

The Sick Times is an independent website that documents the ongoing Long Covid crisis. They invite readers to join them as they “​​investigate injustices, challenge powerful institutions, wade through the latest research, assess COVID-19 data, and offer a platform for those most affected by the crisis.” While COVID continues to…...

In a February 2024 press release, the American Association of People with Disabilities (AAPD) critiqued the Biden-Harris administration and the Center for Disease Control (CDC) and Prevention for their proposed changes in isolation guidelines for people with COVID-19. AAPD is a collaboration between disability advocates, government agencies, and corporate and…...

Alice Wong “(she/her) is a disabled activist, writer, editor, and community organizer. Alice is the founder and director of the Disability Visibility Project, an online community dedicated to creating, sharing, and amplifying disability media and culture.” Wong has created many conversation spaces for people to share their disabled experiences and tell their…...

The disability forward response team The Partnership for Inclusive Disaster Strategies tweeted on May 6th, 2023 in response to the World Health Organization’s announcement of the end of the global health emergency of COVID-19. As disaster responders, they write that “Ending the #COVID Emergency is a #Disaster for #Disabled People.”…...

Dr. Lucky Tran, a public health and climate justice advocate and science communicator, took to X to compare mask signage created by the Metropolitan Transit Authority. On the left is a sign from September 2022 that implies that any way travelers wear a mask is ok even if that’s incorrect.…...

A 1/3/24 article in the New York Daily News has the headline “As Covid Spikes in NYC, Mask Mandates Return to City Hospitals”, which notes: With COVID, flu, and RSV on the rise the NYC public hospital system brought back masking requirements just after Christmas 2023. The spike in this…...

August 17, 2023 Source: Instagram page of Christopher “Unpezverde” Núñez, a Visually Impaired choreographer based in NYC. “8 weeks ago I tested positive for Covid for the seventh time in the last two years. Every time I get infected it takes me 5-6 weeks to recover. This last time it…...

The People’s CDC is organizing a campaign calling for a public oversight of the actions of the CDS’s Healthcare Infection Control Practices Advisory Committee (HICPAC). “There is a dangerous new government policy being proposed which could harm healthcare workers and patients across the country. Instead of strengthening infection control policies in…...

During the deadly first wave of the COVID-19 pandemic, it was clear that the sheer number of people having to live in the communal space of immigration detention made abiding by COVID-19 safety protocols impossible. In response, detainees, medical professionals, activists, and politicians called for ICE to exercise its discretion…...

In this article for Rooted in Rights, author and activist Sunshine Mugrabi writes about her experience as someone who is unable to wear a mask due to chronic regional pain syndrome. Mugrabi discusses personal experiences of trying to navigate doctor’s offices and other spaces with policies that do not account…...

Survival guide posted by author and activist Leah Lakshmi Piepzna-Samarasinha on March 9, 2020, with ideas about prepping Food, Health Supplies, Water, Fuel, and Mutual Aid.  “Most people don’t learn about survival from being in “survivalist/ prepper” communities. As sick, disabled, poor, Black and brown, queer and trans people (to name…...

A phrase used by Patty Berne of Sins Invalid long before the pandemic. “In 2019, Max Airborne re-ignited the phrase as the hashtag #NoBodyIsDisposable, along with Stacey Milbern and Dawn Haney, in an action with Fat Rose and Disability Justice Culture Club to bring Fat and Disability communities together to…...

Sick in Quarters (SiQ), a collective of disabled and chronically ill artists and activists, published this black and white brochure online in 2020 with advice for decreasing the chance of viral spread during and after direct action events. The brochure also contains information about protest rights and how to stay…...

I checked and no one has ever actually done this hashtag. I want to add some. Please join in if you think of any #DisabledPeopleToldYou https://t.co/SozTS6ZGcJ — G Peters ??‍? (@mssinenomine) June 28, 2020 A hashtag started in June 2020 by Canadian disability activist Gabrielle Peters (@mssinenomine), initially to comment…...

Click here for more info On May 22, People’s CDS also published a well-documented statement urging US hospitals to keep masking and COVID-19 admission screening here. —Sasha Kurlenkova

In this satirical short news story, Daniel Downer, 35, who has an autoimmune disease shared by 50 million Americans, expresses his sense of helplessness and bitter irony as he learns from the news that the pandemic is declared “over” by the officials. “I guess I don’t really have a choice,”…...

“Death Panel”, a podcast about the political economy of health, presents an acute critical analysis of the dual news of the upcoming Medicaid Redetermination starting on April 1, 2023, and the end of the COVID-19 public health emergency on May 11, 2023. The hosts examine the fact of disbandment of…...

this is a guide me & my friend Tina wrote with ideas & hacks for how disabled/high risk people can safely hang out outside when it's cold. it's also about how as disabled people we need/are creating ways to be together safely as the pandemic forevers. https://t.co/UsGIyZ0zxa — Leah Lakshmi…...

Despite the pandemic still raging, the Department of Health and Human Services is planning to stop supplying free COVID treatments in 2023. Paxlovid, a Pfizer pill, was distributed for free among nearly 6 million Americans by the federal government during the first years of the pandemic. It prevents such complications…...

The following text is taken from the Youtube description of the video and the press release: In June 2022, Disability advocates in New York represented by DRA signed a settlement agreement that will make the New York City subway accessible for more than half a million people with disabilities who…...

On March 22 2020, with an exponential rate of new COVID cases in the New York State, Governor Cuomo signed two documents:   The executive order “New York State on PAUSE,” which contains a set of 10 rules for the general population, including closing all non-essential business and banning the…...

Brooklyn Center for Independence of the Disabled (BCID) staff Cara Liebowitz, Lisa Gesson, and Joe Rappaport (reading testimony from Lisa Smid) testified at today’s MTA board meeting urging the MTA to re-instate a mask mandate across MTA public transportation. —Yan Grenier

Since the beginning of February 2023, a grassroot collective of disabled artists, activists, and advocates for justice “Sick in Quarters” (SiQ) have launched a community mask redistribution initiative. Anyone interested could sign up if they can hold a quantity of masks to give freely in their area. By the beginning…...

Former police captain Eric Adams won the 2021 New York City mayoral election, in year two of the pandemic, with a “war on crime” campaign that has often manifested as a war on unhoused and mentally disabled people. Unhoused people had been forced into parks and streets as a result…...

2 Lizards, the brilliant eight-part series of short animations, captures the overwhelming sense of anxiety and isolation — as well as the occasional sense of shared community — that so many NYC residents experienced during the first few months of the pandemic when the city was the epicenter of the…...

Disability historian and activist Jaipreet Virdi tweeted in January 2022 about the postponement of her surgery to remove a cancerous ovarian tumor as a result of a new wave of Covid-19 hospitalizations. Elective surgeries, and sometimes critical surgeries, have routinely been postponed in hospitals across the U.S. during the pandemic.…...

The September 18, 2022 episode of 60 Minutes showed President Biden remarking “the pandemic is over” at an auto show in Detroit. “No one’s wearing masks. Everybody seems to be in pretty good shape.” Disability activists on Twitter immediately responded. The following day, Mia Mingus commented, “We are on our…...

How has life changed during this pandemic for New York City’s deaf community? When everyone wears face masks, how does that affect interactions? When is information fully accessible and how can communication be better? Are there signs that are new, or signs that have taken on new meaning? Are there…...

Disabled activists of Downstate New York ADAPT gathered and held a sit-in from March 14th to March 18, 2022, in front of the office of Assembly member Carl E. Heastie in the Bronx to oppose the restrictions imposed on Medicaid-funded home care eligibility in the final state budget of 2020.…...

32 years after the ADA was passed, the transit stations of the borough of Queens still offers no accessibility by ramps or elevators. One-third of the stations, or 21 stations on 81 are accessible in Queens. Riders Alliance joined up with elected officials on March 3rd 2022 to demand more…...

On July 8, 2021 Chancellor Meisha Ross Porter discussed the Academic Recovery Plan on the NYC Department of Education (DOE) website. Acknowledging that disabled students had been disproportionately impacted by the pandemic, the DOE plan included the following bullet points: We will launch afterschool and Saturday programs for students with IEPs to…...

Special Support Services, an advocacy group for disabled students and their families, conducted a survey of parents in 2020 about student educational experiences during the pandemic. Faced with a lack of data and information from the DOE, the advocacy group distributed a 42-question survey in English, Spanish, Chinese and Korean and…...

Chalkbeat, a nonprofit education reporting platform that covers 8 U.S. cities, added Covid reporting to its ongoing series about learning differences and special education in the New York City schools. A June 17, 2020 article offers an overview of the ways “remote learning upended instruction for NYC students with disabilities…...

Parents for Responsible Equitable Safe Schools (PRESS NYC) is a parent collective founded in 2020, spanning NYC zip codes and cultures, to “hold the DOE, the Mayor, and the education press accountable.” Among their projects is The People’s Dashboard, reporting weekly Covid cases in the city as well as confirmed…...

On September 19, 2022, the activist group #MEAction held a series of protests at and around the White House in Washington, DC, demanding that President Biden declare Long Covid and ME/CFS a national emergency with increased funding for medical education, research, and treatment. Despite knowing that participating in such an…...

As fears of Monkeypox spread arose in the spring and summer of 2022—particularly in and around communities of men who have sex with men and their sexual partners—many were concerned about the possibility of yet another overlapping pandemic, especially one that might further stigmatize LGBTQ populations at a time when…...

In February 2022, Mike Mariana published an article in The Guardian about what he called “the great gaslighting.” Mariana, who lives with ME/CFS, describes the dismissal, “misdiagnosing and psychologizing” of Covid longhaulers as a form of “medical gaslighting” that can lead to “medical PTSD” as well as social stigma and…...

The People’s CDC was founded in 2022 in response to the CDC “creating the appearance that the pandemic is over.” According to the group’s website, which offers resources and weekly Covid transmission reports, “The People’s CDC is a coalition of public health practitioners, scientists, healthcare workers, educators, advocates and people…...

A compilation of essays, interviews, and podcast episodes posted to the Disability Visibility Project site in 2020 and 2021. Compiling this material into a “syllabus” in January 2022, Wong writes, “Since March 2020 I have been collecting strands of disabled wisdom about the pandemic and trying to gather, weave, and…...

Throughout the pandemic, many forms of Covid testing have been inaccessible to blind people, from drive-through testing sites to home tests that rely on visual instructions and displays. Some apps, such as Be My Eyes (founded by visually-impaired inventor Hans Jørgen Wiberg) have allowed blind people to video-call sighted people for…...

In December 2020, Imani Barbarin (responding to a TikTok by Ram Danielle on the long term effects of Covid) created a TikTok post (@crutches_and_spice) in which she powerfully stated, “I cant stress this to you all enough, but Covid-19 is a mass disabling event. People are becoming disabled because of…...

Harald Schmidt, Dorothy Roberts, and Amaka Eneanya published an article in the Journal of Medical Ethics in 2021 (e-pub; print publication 2022) in response to the activation by many states of “Crisis Standards of Care” policies during the pandemic. Among other things, these policies guide the rationing of ventilators based…...

Even if it is still required by the MTA, the number of people wearing masks as they board the train, bus or paratransit vehicles dwindled in June 2022. Disabled activists from the Brooklyn Center for Independence of the Disabled took upon themselves meet the riders outside the Atlantic terminal station…...

The pandemic has the existing hardships that afflict the home care workers, forcing them to leave to seek better paying jobs, causing a devastating shortage in home services which continues to grow. An alliance of senior, disability, and family care organizations as well as advocates formed and demanded that the…...

More images: In early April 2022, NYC’s administration engaged in a series of sweeps on unhoused encampments in the city in an effort to reduce homelessness in the city. The sweeps consist in dismantling the camps, dislodging people, and discarding their belongings and redirecting them in safe havens or stabilization…...

In March 2022, the National Network for Long COVID Justice was launched as a coalition of groups representing people with Long Covid and other chronic illnesses (including notable leadership of ME/CFS activists) to insist that governments and institutions take seriously the chronic aspects of the Covid-19 pandemic. The coalition released…...

HIV and ME activist JD Davids aka The Cranky Queer released “I Love Unvaccinated People: a Manifesto for Masks and Humility” on August 1, 2021, a moment in which vaccines themselves—and the discourse surrounding them—were dramatically shifting many people’s experiences of the pandemic. While vaccines enabled many people to re-enter…...

As described in a fieldnote entry on #MEAction’s “Stop. Rest. Pace.” campaign, people with ME/CFS have been advocating since early in the pandemic for allocating greater research and resources toward the post-viral and long-term effects of Covid-19. In addition to public campaigns—and drawing on earlier advocacy work in which patients…...

From the start of the Covid-19 pandemic, people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), an illness often triggered by a viral infection (such as Epstein Barr virus), were among the first to raise alarms about the possible implications of post-viral illness following acute infections. As the pandemic progressed,…...

During the pandemic, two documentaries were produced and launched by advocacy groups on the question of mobility of disabled people in New York City. NYC’s transit system is notorious for its inaccessibility as, out of over 400 subway stations, less than 30% are accessible—and many of which are only accessible…...

Downstate New York ADAPT activists travelled to Washington, DC on May 9 and 10, 2022, protesting in front of the Capitol to demand accessible, affordable, and integrated housing. The group challenged the nursing home industry as high cost structures with poor and dangerous clinical outcomes, as well as isolation and…...

In her blog entry “Disabled In NYC : #MyCovidStory?,” Rebelwheels NYC aka Michelle Kaplan discusses her reality during COVID as a disabled person receiving services at home, losing her usual CDPA home aides over a lack of resources, and contracting COVID from the ones sent by a more traditional agency.…...

A tweet published on August 24th of 2021 shows New York Lawyers for the Public interest and AAARRG! (Access-A-Ride Reform Group) protesting in front of the Metropolitain Transportation Authority (MTA) offices asking to end the shared paratransit rides, in the midst of the Delta wave. For the 16 months since…...

2)I also want you to meet Dustin Jones @EqualAccessNy2 President & Founder United For Equal Access NY Inc. He is one of my disability advisers on this campaign. Here he is talking about the lack of accessible transportation in New York City. (Part 1) pic.twitter.com/J7GTNd6wsh — Maya Contreras (@mayatcontreras) July…...

Disability activist Dustin Jones questions the accessibility of the newly launched OMNY tap-and-go fare payment system, as the discounts for disabled people and seniors remain unavailable months after its implementation. Since October 2020, riders using non-discounted trips were able to pay with their smartphones or contactless cards at all subway…...

This is a picture of an ad-hoc memorial to Christina Yuna Lee, outside of the Chrystie Street apartment building where she died. Her murder has been reported as both part of a rising tide of anti-Asian violence in New York City and part of the uniquely gendered violence that Asian women, in…...

This is a public statement from Beyoncé Knowles-Carter’s philanthropic organization BeyGOOD, supporting Covid-19 relief for communities of color in the United States. BeyGOOD announces their partnership with Jack Dorsey’s #startsmall to donate $6 million to local community-based organizations, including the National Alliance on Mental Illness (NAMI) providing mental wellness services…...

Congresswoman Grace Meng (D-Queens) spoke to MSNBC on February 15, 2022 about the murders of Michelle Go and Christina Yuna Lee in the context of a 339% increase in hate crimes against Asian Americans in the past year. Commenting that more than 50% of the cases in New York involved…...

Critical Design Lab threw the first in a series of Remote Access Crip Nightlife Gatherings over Zoom on March 22, 2020. The Remote Access website explains, “Disabled people have long used remote access as a method for organizing pleasure and kinship. We call forth our community for an afternoon and…...

Disability activist Stacey Park Milbern discussed “navigating COVID-19 as a ventilator user” at a May 6, 2020 California Care Rationing Coalition Press Conference, shortly before her death on May 20. In this YouTube video, she talks about being at high risk for death from Covid and losing access to care…...

On January 9, 2022, artist Jen White-Johnson created a cut paper heart design to amplify the hashtag #MyDisabledLifeIsWorthy created by Imani Barbarin (discussed in another fieldnote). Johnson tweeted: “#MyDisabledLifeIsWorthy this hashtag needs to be plastered for all the world to see.” — Mara Mills

These images were posted by Sins Invalid on March 19, 2020, early in the pandemic on a page entitled Social Distancing and Crip Survival: A Disability-Centered Response to Covid-19. As a disability justice organization, Sins Invalid was among the first organizations to highlight the ways in which the Covid-19 pandemic…...

Photograph of a painted mural by artist Chella Man, located at 112 Christopher Street in Manhattan, depicting illustrated hands spelling out the message “Black Disabled Trans Lives Matter” in American Sign Language. As Chella Man notes on his website: Prior to painting, I realized the identities “Black”, “Disabled”, and “Trans”…...

Chinese Staff and Workers’ Association organized a picket line in September 2021 to protest against MOCA, which is accused of not representing the Chinatown community and “selling out” the community. Local residents, small businesses, and workers in Chinatown are severely hit by the pandemic, while gentrification worsens the living conditions…...

Established in 1972, Chinese-American Planning Council (CPC) Open Door Senior Center has become a community space for elderly Chinese immigrants in NYC for 50 years. Reuniting with friends, various performances, and delicious food are our way of celebrating this milestone. — Shuting Li

Ninety-five percent of artists lost significant income during the pandemic, with performances and exhibitions cancelled and access to studio spaces restricted. A group of disabled and chronically ill artists organized Crip Fund in March 2020, pooling money and distributing food, medicine, and other aid to “immunocompromised and disabled people in need of in-home…...

From AORTA’s Instagram: Ableism has informed the US’s pandemic response since the beginning. Last week, CDC Director Rochelle Walensky cited the “encouraging” data that the majority of Covid deaths are in those with 4 or more pre-existing medical conditions. This statement and its phrasing lay bare what disabled people have…...

On March 7, 2020, as North American cities began to respond to the pandemic with remote school and work options, Canadian disability activist Kate McWilliams created the hashtag #AccessibilityForAbleds. The pandemic revealed how easy it was to provide certain accommodations that disabled and chronically ill people had been demanding, unsuccessfully, for…...

Samantha Myers photographed by Michelle Schwab two weeks after Samantha’s second vaccination, February 2021. Mural by Jeff Rose King on Bleecker St in Greenwich Village where Sam lives. — Faye Ginsburg

Autistic activist Ethan Jones, age 26, photo by Maria Hodamarska (mother), taken June 2020. When the pandemic hit New York, the family moved to Deer Isle, Maine. While there, Ethan told us, that he had time to reflect and embrace what had been an emergent gay identity. On the last…...

Artist, designer, educator, and activist Jen White Johnson created several designs for mural projects honoring Black disabled individuals who were killed by police, as she writes: Since sharing the details of this mural, many disability collectives have reached out to me asking how they can create this mural in their…...

Jay (second from left) is Co-Director of an upcoming documentary, Fire Through Dry Grass, that is centered on a group of people living at Coler Specialty Hospital on Roosevelt Island, a rehabilitation and nursing center in New York City. These men formed the Reality Poets, and are part of OPEN DOORS, a network of…...

On January 7, 2022 CDC director Rochelle Walensky made a remark on Good Morning America about deaths from the Omicron variant of Covid that provoked outrage in the disability community: “These are people who were unwell to begin with. And yes: really encouraging news in the context of Omicron.” In…...

Pareidolia (Vaccinate Now), one of the posters created by Brothers Sick (Ezra Benus and Noah Benus) during the pandemic, reminds that vaccination is urgent but not always straightforward. The Brothers Sick demand an end to medical rationing, the rationing of care, and vaccine hoarding on a global scale. Sussanne Pfeffer, director…...

This is a poster produced by the Coalition for the Homeless, the advocacy group that organized and financed the landmark Mixon v. Grinker lawsuit which expanded the rights of HIV+ unhoused people to medically appropriate shelter. The poster is currently on display at the New York Historical Society, located on…...