Fieldnotes

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…...

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…...

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…...

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…...

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…...

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…...

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.…...

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…...

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…...

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

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.…...

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…...

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…...

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…...

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…...

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…...

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…...

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…...

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 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…...

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…...

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…...

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…...

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…...

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 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,…...

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

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…...

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…...

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…...

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…...

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…...

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…...

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…...

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…...

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…...