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A review by horrorbutch
How to Be Disabled in a Pandemic by Rayna Rapp, Mara Mills, Faye Ginsburg, Harris Kornstein
challenging
emotional
informative
reflective
medium-paced
5.0
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.
Content Warnings
Graphic: Ableism, Death, Hate crime, Racism, Terminal illness, Police brutality, Medical content, Pandemic/Epidemic