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How to Be Disabled in a Pandemic
A chronicle of ableism and disability activism in New York City during the COVID-19 pandemicHow to Be Disabled in a Pandemic is the first book to document the experiences of those hardest hit by the COVID-19 pandemic in New York City—disabled people. Diverse disability communities across the five boroughs have been disproportionately impacted by city and national policies, work and housing conditions, stigma, racism, and violence—as much as by the virus itself. Disabled and chronically-ill activists have protested plans for medical rationing and refuted the eugenic logic of mainstream politicians and journalists who “reassure” audiences that only older people and those with disabilities continue to die from COVID-19. At the same time, as exemplified by the viral hashtag #DisabledPeopleToldYou, disability expertise has become widely recognized in practices such as accessible remote work and education, quarantine, and distributed networks of support and mutual aid. This edited volume charts the legacies of this “mass disabling event” for uncertain viral futures, exploring the dialectic between disproportionate risk and the creativity of a disability justice response.How to Be Disabled in a Pandemic includes contributions by wide-ranging disability scholars, writers, and activists whose research and lived experiences chronicle the pandemic’s impacts in prisons, migrant detention centers, Chinatown senior centers, hospitals in Queens and the Bronx, working from bed in Brooklyn, subways, schools, housing shelters, social media, and other locations of public and private life. By focusing on New York City over the course of three years, the book reveals key themes of the pandemic, including hierarchies of disability vulnerability, the deployment of disability as a tool of population management, and innovative crip pandemic cultural production. How to Be Disabled in a Pandemic honors those lost, as well as those who survived, by calling for just policies and caring infrastructures, not only in times of crisis but for the long haul.
- GenresDisabilityPolitics
392 pages, Hardcover
Published February 25, 2025
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February 27, 2025
Disclaimer: I received an e-ARC from netgalley in exchange for a review.
This book examines various perspectives on the Covid-19 perspective throughout New York through a Disabled lens. The first part of the book focuses on various living environments and how that affected a person’s experience during the beginning of the pandemic (including imprisoned people, unhoused people, people who rely on at-home caring and people in nursing homes and long-term care facilities and finally children in special education). Part 2 of the novel focusses on crip pandemic doulaship concerning Long Covid and ME, as well as the way some disabled people were left behind in the pandemic (here with a focus on blind people). The next few chapters focus on certain racial demographics, including Chinese-Americans in senior centers, Black mothers experiencing mental health issues as well as the especially precarious situation of immigrant workers. One chapter also focusses on prison abolitionism and how activism changed during the pandemic. The last chapters focus on the necessity of mutual aid for autistic people and the lives of disabled artists.
One thing that really made this book stand out for me was the fact that it included so many different perspectives, often focusing on those most marginalized. The essays here are written by disabled people or through reporting on interviews with disabled people, as well as experts in disability studies, activism and journalism as well as quite a few people that overlap between those two. There are a lot of real life examples and a ton of links and sources for future reading material for the subjects portrayed here.
If you are interested in Disability Activism or the impact of the Covid-19 pandemic on the lives of disabled New Yorkers as well as any of the topics I mentioned in the first paragraph of this review, do yourself a favor and check this book out. I cried a few times, since a lot of the topics examined here are focused on the way Covid-19 increased injustices in our society and thus weren’t easy reads, but I found it incredibly important.
Chapter 1 featuring interviews of people who lived through the early years of the Covid-19 pandemic in prison was harrowing. Not only were prisoners kept from information and denied protective gear (and things such as social distancing or clean air are an illusion), but if you did get sick you were sent into isolation instead of receiving medical treatment. One of the interviewees termed it as “punished for being sick”. Covid-19 and the rules and regulations accompanying it were seen as just another tool to force compliance in the population, but when someone was in need of actual help, they were ignored and punished. A very hard-to-read start into this collection, but one that I found incredibly important.
Chapter 2 focusses on the experience of immigrants and the various ways they were excluded from financial support to avoid getting sick, while simultaneously having to fear hospitals as a place in which deportation can occur. The experiences of immigrants in detention centers also heavily overlap with the experiences of imprisoned people, but the increased vulnerability of this population due to even less access to legal safety structures and their exclusion from most forms of governmental support really underlined how Covid-19 exasperates already existing structures of oppression to even more dangerous levels.
Chapter 3 focusses on the homeless population of New York, comparing the way homeless people were treated during the HIV-pandemic and the similarities to Covid-19 and the various different ways of government funded shelter (including individual shelter in a hotel room) influences the lives of disabled homeless people.
Chapter 4 examines the changes in transport (both public and private), as well as the changes in digital accessibility on disabled lives. Since disabled and at-risk populations where heavily discouraged from using mass public transport, different and sometimes much more accessible solutions for transport where found, which really helped some people out. I particularly found the way increased availability of delivery services was viewed critically as something that is very beneficial for disabled people, but also exploits labor, important.
Chapter 5 looks at the way triage was implemented during the Covid-19 pandemic and the use of Ventilators was restricted. It examines the way plans where made for just this scenario and the reality of implementation, as well as the various and different plans implemented in different hospitals around New York. Very much focused on the medicinal and statistical aspects, but very, very interesting.
Chapter 6 focusses on schools, in particular special education, and how students with disabilities and their families experienced the pandemic, once again showing that already existing inequalities in schooling and opportunities where increased sharply through the pandemic and made all the more visible and destructive. This chapter also includes the voices of mothers desperate for their children to return to in person schooling after the first year of lockdown as their children really struggled with remote learning or faced technological barriers of access and the mothers, who wanted to keep remote access to learning available as it protected their children from infection and for some increased their learning ability due to removing barriers of access. To me this illustrated the need for a diverse approach to teaching and learning in all schools in a really interesting and necessary way.
Chapter 7 examines the changes in care for intellectually or developmentally disabled people with in-home carers or those living in institutions as healthcare personnel grew sick themselves, refused to vaccinate and mask or quit their job. There are also interviews with parents, who function as caretakers to their disabled children, and their fear to die and leave their children in unclear support systems. I really found it fascinating how this text examined the struggles of ever-changing routines during the pandemic and how that affected people. In the last third of this chapter the text also looks at the creation of art and how Zoom and phone calls or texting to check in allowed for connection between disabled artist collectives, who wouldn’t have met otherwise.
Chapter 8 is the beginning of the second part of this book, examining disability communities and kinship. This chapter looks at ME activism and how the people affected with it where some of the first to talk about the long-term dangers of the pandemic, the hope that the increased focus on ME through Long Covid would finally increase funding and find a cure as well as the complicated feeling that ME was ignored for so long and is still sometimes ignored in favor of Long Covid, as well as the fear of the time when healthcare might move on from Long Covid, leaving those affected behind just like people with ME have been left behind before.
Chapter 9 focusses on the access needs of blind people during the pandemic. I really found the interview about how masking changed the way blind and visually impaired people picked up sound cues in their environment and thus required a bigger adjustment period, as well as how the lack of touch (both with others and with objects in daily use) was difficult to deal with. Similarly to some other pieces in this collection so far this essay also deals with the way that accessibility created during the pandemic is already being rolled back again, regardless of how many people will be left behind once more in the push to “return to normal”.
Chapter 10 introduces a senior center for elderly Chinese immigrants and analyses their ideals of “successful aging” and how that overlaps with ideas of the “model minority”, as well as how they experienced the Covid-19 pandemic and the sharp incline of anti-Asian hatecrimes. I was particularly interested in the examination of how disability is viewed by the people in the center themselves and seeing how that ties back to ideas surrounding disability in China before the 1980s.
Chapter 11 returns once more to the carceral system and focusses on prison abolitionism and community outreach for incarcerated people as well as support for survivors of violence. I also found it really important that this chapter takes into account the livelihoods of disabled sex workers and how their lives were impacted during the first year of the pandemic.
Chapter 12 focusses on Black motherhood with a specific focus on Black women with mental health issues. It was harrowing to read how the lack of support in labor during the beginning of the pandemic harmed birthing people, especially as Doulas were prohibited from offering support to their patients due to visitor restrictions.
Chapter 13 examines Disability Justice and Mutual Aid in autistic communities in New York during the pandemic and in France. The autistic individuals portrayed here sometimes benefitted from the switch to digital living and in particular from the increased governmental funding, while others suffered from the isolation. I really enjoyed how much this piece emphasized the importance of community and taking care of each other.
Chapter 14 focusses on making art while in bed, sometimes made by disabled people who stay indoors during the pandemic, whereas other disabled people make all their art from their bed. An interesting, but comparatively relatively short chapter.
Chapter 15 reports the experiences of a disabled journalist, who wrote various articles about how COVID-19 affected disabled people. Hearing about the many people, who were interviewed, but couldn’t be mentioned in the limited scope of the articles was heartbreaking. I did really enjoy the ending of the article, which also mentions how important it is to uplift Disabled Joy.
The collection closes with a speech by Judith Heumann, in which she addresses the experiences of disabled people during the pandemic.
This book examines various perspectives on the Covid-19 perspective throughout New York through a Disabled lens. The first part of the book focuses on various living environments and how that affected a person’s experience during the beginning of the pandemic (including imprisoned people, unhoused people, people who rely on at-home caring and people in nursing homes and long-term care facilities and finally children in special education). Part 2 of the novel focusses on crip pandemic doulaship concerning Long Covid and ME, as well as the way some disabled people were left behind in the pandemic (here with a focus on blind people). The next few chapters focus on certain racial demographics, including Chinese-Americans in senior centers, Black mothers experiencing mental health issues as well as the especially precarious situation of immigrant workers. One chapter also focusses on prison abolitionism and how activism changed during the pandemic. The last chapters focus on the necessity of mutual aid for autistic people and the lives of disabled artists.
One thing that really made this book stand out for me was the fact that it included so many different perspectives, often focusing on those most marginalized. The essays here are written by disabled people or through reporting on interviews with disabled people, as well as experts in disability studies, activism and journalism as well as quite a few people that overlap between those two. There are a lot of real life examples and a ton of links and sources for future reading material for the subjects portrayed here.
If you are interested in Disability Activism or the impact of the Covid-19 pandemic on the lives of disabled New Yorkers as well as any of the topics I mentioned in the first paragraph of this review, do yourself a favor and check this book out. I cried a few times, since a lot of the topics examined here are focused on the way Covid-19 increased injustices in our society and thus weren’t easy reads, but I found it incredibly important.
Chapter 1 featuring interviews of people who lived through the early years of the Covid-19 pandemic in prison was harrowing. Not only were prisoners kept from information and denied protective gear (and things such as social distancing or clean air are an illusion), but if you did get sick you were sent into isolation instead of receiving medical treatment. One of the interviewees termed it as “punished for being sick”. Covid-19 and the rules and regulations accompanying it were seen as just another tool to force compliance in the population, but when someone was in need of actual help, they were ignored and punished. A very hard-to-read start into this collection, but one that I found incredibly important.
Chapter 2 focusses on the experience of immigrants and the various ways they were excluded from financial support to avoid getting sick, while simultaneously having to fear hospitals as a place in which deportation can occur. The experiences of immigrants in detention centers also heavily overlap with the experiences of imprisoned people, but the increased vulnerability of this population due to even less access to legal safety structures and their exclusion from most forms of governmental support really underlined how Covid-19 exasperates already existing structures of oppression to even more dangerous levels.
Chapter 3 focusses on the homeless population of New York, comparing the way homeless people were treated during the HIV-pandemic and the similarities to Covid-19 and the various different ways of government funded shelter (including individual shelter in a hotel room) influences the lives of disabled homeless people.
Chapter 4 examines the changes in transport (both public and private), as well as the changes in digital accessibility on disabled lives. Since disabled and at-risk populations where heavily discouraged from using mass public transport, different and sometimes much more accessible solutions for transport where found, which really helped some people out. I particularly found the way increased availability of delivery services was viewed critically as something that is very beneficial for disabled people, but also exploits labor, important.
Chapter 5 looks at the way triage was implemented during the Covid-19 pandemic and the use of Ventilators was restricted. It examines the way plans where made for just this scenario and the reality of implementation, as well as the various and different plans implemented in different hospitals around New York. Very much focused on the medicinal and statistical aspects, but very, very interesting.
Chapter 6 focusses on schools, in particular special education, and how students with disabilities and their families experienced the pandemic, once again showing that already existing inequalities in schooling and opportunities where increased sharply through the pandemic and made all the more visible and destructive. This chapter also includes the voices of mothers desperate for their children to return to in person schooling after the first year of lockdown as their children really struggled with remote learning or faced technological barriers of access and the mothers, who wanted to keep remote access to learning available as it protected their children from infection and for some increased their learning ability due to removing barriers of access. To me this illustrated the need for a diverse approach to teaching and learning in all schools in a really interesting and necessary way.
Chapter 7 examines the changes in care for intellectually or developmentally disabled people with in-home carers or those living in institutions as healthcare personnel grew sick themselves, refused to vaccinate and mask or quit their job. There are also interviews with parents, who function as caretakers to their disabled children, and their fear to die and leave their children in unclear support systems. I really found it fascinating how this text examined the struggles of ever-changing routines during the pandemic and how that affected people. In the last third of this chapter the text also looks at the creation of art and how Zoom and phone calls or texting to check in allowed for connection between disabled artist collectives, who wouldn’t have met otherwise.
Chapter 8 is the beginning of the second part of this book, examining disability communities and kinship. This chapter looks at ME activism and how the people affected with it where some of the first to talk about the long-term dangers of the pandemic, the hope that the increased focus on ME through Long Covid would finally increase funding and find a cure as well as the complicated feeling that ME was ignored for so long and is still sometimes ignored in favor of Long Covid, as well as the fear of the time when healthcare might move on from Long Covid, leaving those affected behind just like people with ME have been left behind before.
Chapter 9 focusses on the access needs of blind people during the pandemic. I really found the interview about how masking changed the way blind and visually impaired people picked up sound cues in their environment and thus required a bigger adjustment period, as well as how the lack of touch (both with others and with objects in daily use) was difficult to deal with. Similarly to some other pieces in this collection so far this essay also deals with the way that accessibility created during the pandemic is already being rolled back again, regardless of how many people will be left behind once more in the push to “return to normal”.
Chapter 10 introduces a senior center for elderly Chinese immigrants and analyses their ideals of “successful aging” and how that overlaps with ideas of the “model minority”, as well as how they experienced the Covid-19 pandemic and the sharp incline of anti-Asian hatecrimes. I was particularly interested in the examination of how disability is viewed by the people in the center themselves and seeing how that ties back to ideas surrounding disability in China before the 1980s.
Chapter 11 returns once more to the carceral system and focusses on prison abolitionism and community outreach for incarcerated people as well as support for survivors of violence. I also found it really important that this chapter takes into account the livelihoods of disabled sex workers and how their lives were impacted during the first year of the pandemic.
Chapter 12 focusses on Black motherhood with a specific focus on Black women with mental health issues. It was harrowing to read how the lack of support in labor during the beginning of the pandemic harmed birthing people, especially as Doulas were prohibited from offering support to their patients due to visitor restrictions.
Chapter 13 examines Disability Justice and Mutual Aid in autistic communities in New York during the pandemic and in France. The autistic individuals portrayed here sometimes benefitted from the switch to digital living and in particular from the increased governmental funding, while others suffered from the isolation. I really enjoyed how much this piece emphasized the importance of community and taking care of each other.
Chapter 14 focusses on making art while in bed, sometimes made by disabled people who stay indoors during the pandemic, whereas other disabled people make all their art from their bed. An interesting, but comparatively relatively short chapter.
Chapter 15 reports the experiences of a disabled journalist, who wrote various articles about how COVID-19 affected disabled people. Hearing about the many people, who were interviewed, but couldn’t be mentioned in the limited scope of the articles was heartbreaking. I did really enjoy the ending of the article, which also mentions how important it is to uplift Disabled Joy.
The collection closes with a speech by Judith Heumann, in which she addresses the experiences of disabled people during the pandemic.
December 9, 2024
How to Be Disabled in a Pandemic features a variety of stories reflecting on how the ongoing COVID-19 pandemic has affected various subsets of the disabled community.
"[The pandemic] response has been the most glaring, acute, widespread ableism many of us have ever experienced. The determination to approach COVID mitigation with as few messures as possible in order to allow the most freedoms possible fails to acknowledge whose freedoms are granted and whose are disregarded."
The expertise gathered in this collection is astounding. This book features testimony from members of the disabled community as well as experts in disability fields (with a certain amount of expected overlap between these two). Every single chapter is laser focused on its subject, and is concise and succinct. This is all supported by plenty of real life examples that reflect on its chosen topic, plus a myriad of notes and references.
As someone with severe ME among other chronic illnesses I found a lot of recognition within How to Be Disabled in a Pandemic. Not only in the chapter dedicated to 'my' disease, but also in various other chapters portraying the struggles of various disabled people. Where I didn't find recognition I found opportunity to learn. Especially the chapters on immigrants, people in the carceral system, and unhoused people gave me new perspectives and insights to consider.
"We therefore consider the failures of the pandemic as an opportunity to imagine new systems, systems that offer collective protection for the dependence and interdependence that mark us all."
This work makes a wonderful reference book. Chapters can be read in any order, and can easily be referred back to after reading. An important overarching theme of this book is the pandemic laying bare what was already there. The racism, ableism, and marginalization that already plagued different marginalized groups got magnified by the COVID-19 pandemic. With this we get to one of the most important take-home messages: We need to fight for equity for these groups at all times, not just during pandemic times.
"The pandemic revealed just how easy it could be to provide certain accommodations - such as remote access to work, school, and therapy - that disabled and chronically ill people had been demanding, unsuccessfully, for years."
How to Be Disabled in a Pandemic is a must read for every single citizen of this planet. As a member of any marginalized community you might find recognition. As a person with privelege you will find plenty of opportunity to expand your perspective, and have your eyes opened to issues you might not have been aware of otherwise. While this book includes passages on undeniable suffering, it also offers hope and a way forward for humanity.
Thank you Mara Mills, Harris Kornstein, Faye Finsburg, Rayna Rapp, and NYU Press for providing this book for review consideration via NetGalley. All opinions are my own.
"[The pandemic] response has been the most glaring, acute, widespread ableism many of us have ever experienced. The determination to approach COVID mitigation with as few messures as possible in order to allow the most freedoms possible fails to acknowledge whose freedoms are granted and whose are disregarded."
The expertise gathered in this collection is astounding. This book features testimony from members of the disabled community as well as experts in disability fields (with a certain amount of expected overlap between these two). Every single chapter is laser focused on its subject, and is concise and succinct. This is all supported by plenty of real life examples that reflect on its chosen topic, plus a myriad of notes and references.
As someone with severe ME among other chronic illnesses I found a lot of recognition within How to Be Disabled in a Pandemic. Not only in the chapter dedicated to 'my' disease, but also in various other chapters portraying the struggles of various disabled people. Where I didn't find recognition I found opportunity to learn. Especially the chapters on immigrants, people in the carceral system, and unhoused people gave me new perspectives and insights to consider.
"We therefore consider the failures of the pandemic as an opportunity to imagine new systems, systems that offer collective protection for the dependence and interdependence that mark us all."
This work makes a wonderful reference book. Chapters can be read in any order, and can easily be referred back to after reading. An important overarching theme of this book is the pandemic laying bare what was already there. The racism, ableism, and marginalization that already plagued different marginalized groups got magnified by the COVID-19 pandemic. With this we get to one of the most important take-home messages: We need to fight for equity for these groups at all times, not just during pandemic times.
"The pandemic revealed just how easy it could be to provide certain accommodations - such as remote access to work, school, and therapy - that disabled and chronically ill people had been demanding, unsuccessfully, for years."
How to Be Disabled in a Pandemic is a must read for every single citizen of this planet. As a member of any marginalized community you might find recognition. As a person with privelege you will find plenty of opportunity to expand your perspective, and have your eyes opened to issues you might not have been aware of otherwise. While this book includes passages on undeniable suffering, it also offers hope and a way forward for humanity.
Thank you Mara Mills, Harris Kornstein, Faye Finsburg, Rayna Rapp, and NYU Press for providing this book for review consideration via NetGalley. All opinions are my own.
March 26, 2025
How to Be Disabled in a Pandemic is a necessary but not unproblematic book. It casts an impressively broad light on the structural exclusion of disabled people during COVID-19 — yet it remains conspicuously silent about the power dynamics within the disability community itself. Who is writing for whom? Who gets to speak because they have access to digital networks, cultural capital, and academic platforms — and who remains excluded, despite the editors’ best intentions?
Although the book explicitly strives for multivocality, it is firmly rooted in a progressive, urban, intellectual milieu, with New York functioning as a normative center. It shows much, but it also misses what remains invisible: deep poverty beyond the metropolis, disabled people who do not identify as “crip,” who lack artistic practices or activist networks, who have no language to frame their experiences politically. They are mentioned — but rarely truly heard.
The form also raises questions: the shifting between anecdote, analysis, and activism is at times illuminating, but just as often fragmentary. Not all chapters are equally well-substantiated; some lean on a kind of militant self-evidence that asserts its own righteousness more than it invites broader reflection. And while the book explicitly criticizes neoliberal logic, it remains notably quiet about the role of academic pandemic production — of which it is itself a part.
Still, the significance of this volume holds: it initiates a long-overdue conversation, and it does so with a rare blend of intellectual rigor and emotional force. But it is not a destination. Rather, it is a waypoint — and a mirror. Anyone reading this book must also be willing to interrogate what it does not dare or manage to say.
Although the book explicitly strives for multivocality, it is firmly rooted in a progressive, urban, intellectual milieu, with New York functioning as a normative center. It shows much, but it also misses what remains invisible: deep poverty beyond the metropolis, disabled people who do not identify as “crip,” who lack artistic practices or activist networks, who have no language to frame their experiences politically. They are mentioned — but rarely truly heard.
The form also raises questions: the shifting between anecdote, analysis, and activism is at times illuminating, but just as often fragmentary. Not all chapters are equally well-substantiated; some lean on a kind of militant self-evidence that asserts its own righteousness more than it invites broader reflection. And while the book explicitly criticizes neoliberal logic, it remains notably quiet about the role of academic pandemic production — of which it is itself a part.
Still, the significance of this volume holds: it initiates a long-overdue conversation, and it does so with a rare blend of intellectual rigor and emotional force. But it is not a destination. Rather, it is a waypoint — and a mirror. Anyone reading this book must also be willing to interrogate what it does not dare or manage to say.
March 4, 2025
This is very important reading, it gives a lot of data and context for how Covid is a truly mass disabling event and made life harder on those already disabled.
This is an academic work, it is not an easy read, but I still think a lot of people would benefit from really looking into the studies, data, and the moving anecdotal information offered throughout.
I am someone who has been permanently effected by long Covid, which I've been dealing with for over three years. This work was very validating in my experiences where doctors have been quick to shove my issues aside.
Thank you NetGalley and the publisher for an advanced copy to read in exchange for my honest review.
This is an academic work, it is not an easy read, but I still think a lot of people would benefit from really looking into the studies, data, and the moving anecdotal information offered throughout.
I am someone who has been permanently effected by long Covid, which I've been dealing with for over three years. This work was very validating in my experiences where doctors have been quick to shove my issues aside.
Thank you NetGalley and the publisher for an advanced copy to read in exchange for my honest review.
March 24, 2025
Loved reading such an informative book on how the COVID19 Pandemic shaped the lives of those with disabilities. The pandemic added another layer to the already difficult lives of someone with chronic illness or disability. This book doesn't just focus on one aspect or disability group but multiple. If you are interested in disability advocacy this is a fantastic book to pick up.
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