Fieldnotes

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…...

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

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…...

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…...

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…...

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…...

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…...

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…...

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…...

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 gatherings…...

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.…...

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…...

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…...

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…...

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…...

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…...

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

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…...

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…...

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…...

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…...

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…...

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…...

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…...

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.…...

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…...

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…...

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…...

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…...

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…...

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…...

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.…...

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…...

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…...

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”…...