COVID – Made of Stardust and Stubbornness

“Disposable” Review

Posted on March 16, 2025March 26, 2025 by Jen

“Disposable: America’s Contempt for the Underclass” by Sarah Jones

In the tradition of Matthew Desmond’s Evicted and Andrea Elliot’s Invisible Child, Disposable is a poignant exploration of America’s underclass, left vulnerable by systemic racism and capitalism. Here, Sarah Jones delves into the lives of the essential workers, seniors, and people with disabilities who were disproportionately affected by COVID-19—not due to their age or profession, but because of the systemic inequality and poverty that left them exposed.

The pandemic served as a stark revelation of the true state of America, a country where the dream of prosperity is a distant mirage for millions. Jones argues that the pandemic didn’t create these dynamics, but rather revealed the existing social mobility issues and wealth gap that have long plagued the nation. Behind the staggering death toll are stories of lives lost, injustices suffered, and institutions that failed to protect their people.

Jones brings these stories to the forefront, transforming the abstract concept of the pandemic into a deeply personal and political phenomenon. She argues that America has abandoned a sacrificial underclass of millions but insists that another future is possible. By addressing the pervasive issues of racial justice and public policy, Jones calls for a future where no one is seen as disposable again.

Review

This was a really good look at the various issues around COVID disparities and the vastly different outcomes because of race, disability and/or poverty. I felt like the author did a great job using various peoples’ stories to showcase all the different situations and outcomes. I also liked that the author discussed the issues with congregate settings and how people in those settings were basically doomed by COVID. There was a good focus on all kinds of congregate settings from people with Intellectual Disabilities in group homes, to elderly individuals in nursing homes to individuals in prisons and jails. There was also a good discussion about the way various jobs didn’t allow for any precautions to be taken and people were forced to work while sick or risk being fired because there’s no paid sick time for many.

There’s also the emphasis on how if you don’t have money or status and can’t work you’re not seeing as worthy. The rich and powerful only care about money and staying in power. The way things opened back up quickly just highlighted how much people cared more about the economy than people. I also liked the fact that the author didn’t shy away from saying that COVID is still a major problem and that people are still getting sick and dying from it. We never should have tried to return to normal because normal doesn’t exist anymore.

Book Details

The cover of Disposable has a black and white image of an empty country road with light posts and trees on the side and wires going across. There is an American flag floating in the air upside down and partially folded over under a dark cloudy sky. The title is at the top with the authors name at the bottom.

Author’s Website: Sarah Jones (Blue Sky)
Publisher / Date: Avid Reader Press / Simon & Schuster, February 2025
Genre: Essay Collection, Disability, COVID
Page Count: 295
Completion Date: March 16, 2025

“The Future Is Disabled” Review

Posted on March 9, 2025March 26, 2025 by Jen

“The Future Is Disabled: Prophecies, Love Notes and Mourning Songs”
by Leah Lakshmi Piepzna-Samarasinha

In The Future Is Disabled, Leah Laksmi Piepzna-Samarasinha asks some provocative questions: What if, in the near future, the majority of people will be disabled – and what if that’s not a bad thing? And what if disability justice and disabled wisdom are crucial to creating a future in which it’s possible to survive fascism, climate change, and pandemics and to bring about liberation?

Building on the work of their game-changing book “Care Work: Dreaming Disability Justice”, Piepzna-Samarasinha writes about disability justice at the end of the world, documenting the many ways disabled people kept and are keeping each other – and the rest of the world – alive during Trump, fascism and the COVID-19 pandemic. Other subjects include crip interdependence, care and mutual aid in real life, disabled community building, and disabled art practice as survival and joy.

Written over the course of two years of disabled isolation during the pandemic, this is a book of love letters to other disabled QTBIPOC (and those concerned about disability justice, the care crisis, and surviving the apocalypse); honor songs for kin who are gone; recipes for survival; questions and real talk about care, organizing, disabled families, and kin networks and communities; and wild brown disabled femme joy in the face of death. With passion and power, The Future Is Disabled remembers our dead and insists on our future.

Review

The basic concept of this book is that we’d all be a lot better off if we learned how to care about each other and to take care of each other without getting caught up in our differences. Not that it’s ever easy – there’s a whole chapter on why even people with good intentions in the disability community doing disability justice work can cause harm to each other. But the basic fact remains if we worked together instead of fighting each other we be better off. The book was written during the first Trump presidency and the points made in the book matter even more now during the second.

It also makes the point that we often forget how vastly different our experiences can be. COVID impacted people very differently and while many people were stuck at home bored others were dealing with the deaths of friend and family on a near daily bases. COVID never actually ended and yet everyone wanted to go back to normal. Normal doesn’t exist and often disabled people are the first to learn how to adapt to a new world. Now is the time to learn.

Book Details

The book cover has a bright light at the top left corner which shines white, orange, red, purple to the bottom right where it's a darker blue/black. In the center of the cover is a sundial but the numbers are figures of people with a person standing in the center showing a shadow towards the bottom right corner. The title is positioned at the bottom left corner with the authors name at the top.

Author’s Website: Leah Lakshmi Piepzna-Samarasinha
Publisher / Date: Arsenal Pulp Press, October 2022; Updated 2023 edition includes a new chapter and afterword by the author
Genre: Memoir, Essay Collection, Disability
Page Count: 334
Completion Date: March 9, 2025

COVID Precautions

Posted on January 8, 2023October 5, 2024 by Jen

Note: Originally posted on https://jenrohrigdesign.com/

Shortly after posting the previous post (Three Years of COVID) on the night of December 31st I developed a fever and increased congestion. The very mild congestion had been there but felt normal for this time of year. After sleeping badly that night I took a COVID test early the next morning. It was positive almost right away – apparently that signals a high viral load. Fortunately I was able to get in touch with a doctor through my insurance’s virtual Doctor portal and obtained a prescription for Paxlovid which I started that night.

I stopped eating at restaurants early in 2020 when the pandemic started and started wearing masks when going to the store and other places I needed to go that were indoors. I’ve continued to do so, including wearing a mask at work when we returned fully to the office. As I said in the previous post it’s been frustrating watching everyone go back to normal and acting like the pandemic is over. COVID is still here and in Massachusetts the cases are increasing. The fact that I got it now after all this time is only proof that everyone should have been taking it seriously.

Some people would say that since I got COVID anyway, taking precautions is pointless. I think they’re either ignoring or misunderstanding that the precautions available – vaccines and wearing a mask and social distancing – were always about reducing the risk of getting COVID. Nothing is 100% – including COVID precautions. Just like wearing a seat belt and having an airbag in a car isn’t a guarantee you’ll survive a serious car accident, but they do improve your chances of getting out of it alive. It’s also true that the vaccines and boosters help reduce the severity of COVID if you do get it.

What truly bothers me about getting COVID now is if I hadn’t been paying attention I would have missed the fact that I was developing a fever the evening December 31st. Because of how mild my symptoms were, if I hadn’t realized I had a fever, I may not have tested myself for COVID. It also happened that I still had a few home tests left at home otherwise I would have had to wait for a PCR test. Given all of this it’s really not a surprise COVID is out of control, and that’s why I believe we should be continuing all of the precautions.

The argument that COVID is not any worse than the flu has always been wrong – especially since this is a new virus that we don’t know enough about even three years later. There’s increasing evidence that evan mild cases (like mine) can result in damage to the body and Long COVID symptoms. Also it was never actually a good idea to repeatedly get sick to start with. People may think it’s “normal” to get colds every year but avoiding getting sick has never been a bad idea. Staying home when sick has always been the best idea – the problem is that many schools and workplaces don’t allow for adequate sick time. As a result we’ve developed this mindset that getting sick is just the way things are because it can’t be helped.

There’s also a lot of misinformation going around about “immunity debt” and people insisting that we need to get sick in order to have a healthy immune system. The article “There’s no such thing as a good cold: “Immunity debt” can explain this year’s eye-popping cold and flu season — but it can also be dangerously misinterpreted.” does a good job of explaining how it isn’t safer to get sick than it is to avoid getting sick if you can.

I continue to believe that mask and vaccine mandates are needed to slow if not stop the spread of COVID. That said I also believe there have been situations where mandates have caused more harm than good because of how they’ve been implemented. For example disabled people living in group homes, or anyone living in congregate settings, who already had limited access suddenly having access to nothing. No contact with family, no access to medical teams or other therapies, no ability to even go outside because the staff wouldn’t take them. In many ways their safety was more impacted by the lock downs than COVID even while being at higher risks of dying from it.

There also continues to be a disproportionate response to violations of various rules regarding masking and social distances. There were several news articles about the numbers of Black people being arrested (sometimes violently) for not social distancing or wearing a mask compared to white people doing the same thing being ignored. There’s also been an increase in violence towards Asian people – blaming them for causing COVID. I strongly recommend reading Steven W. Thrasher’s book “The Viral Underclass: The Human Toll When Inequality and Disease Collide” for more on the disproportionate responses to how society deals with managing disease.

Additional Reading:

“The terrible toll of COVID-19 on people with intellectual disabilities” by Wendy Ross, MD at AAMC

“COVID continues to hit nursing homes harder, AARP data shows: Cases are surging everywhere, and nursing home residents remain more likely to face severe illness and death.” by Sara Luterman at The 19th

“The People Who Can’t Just Wear a Mask: The new CDC guidance provides hope for some of the people most isolated by the pandemic.” by Sara Luterman at Slate

“High-Risk Pandemic Stories: A Syllabus” a collection of various articles, blog posts and tweets created by Alice Wong at the Disability Visibility project: “Since March 2020 I have been collecting strands of disabled wisdom about the pandemic and trying to gather, weave, and share them. Disabled, fat, older, poor, immunocompromised, and chronically ill folks have been oracles well before this global public health disaster and continue to this day as institutions and leaders treat marginalized communities as disposable.”

“Long COVID: Long-Term Effects of COVID-19” by multiple authors at Hopkins Medicine

“Long COVID stemmed from mild cases of COVID-19 in most people, according to a new multicountry study” by Sara Wulf Hanson and Theo Vos at The Conversation

“Even mild Covid is linked to brain damage, scans show:
The new British research is the first to reveal striking differences in areas of the brain based on scans taken before and after a coronavirus infection.” by Benjamin Ryan at NBC

Three Years of COVID

Posted on December 31, 2022October 5, 2024 by Jen

Note: Originally posted on https://jenrohrigdesign.com/

I’m so frustrated that we’ve had three years of a pandemic that very few people have taken as seriously as they should. It’s been frustrating watching everyone drop all precautions and acting as though there’s no reason to continue being cautious. The news paper articles and other media mocking those taking precautions have been happening for a while but they’re getting particularly worse as those of us who are still taking precautions are largely viewed as fearful of everything.

The pandemic isn’t over despite what a lot of people want to believe. We never had COVID under control and most people never took it as seriously as they should have. Part of the reason for that is that the groups most impacted were minorities (Black and Indigenous people, disabled people and/or elderly people). People, including the director of the CDC kept saying only the old and already sick would die. The statement is horrible on its own but it’s also largely a lie given the numbers of deaths there have been from COVID at all age levels and health. But then some of us are used to pushing aside scary ideas and focusing on the positives…

In chapter three of their book “The Future Is Disabled” Leah Lakshmi Piepzna-Samarasinha has a section called “Death COVIDs” and Disabled Grief Access Intimacy” which begins with the following two paragraphs:

“Every single BIPOC person I know had an incredible number of people in our lives die during the pandemic. A lot of us weren’t strangers to death, we’d lost people to suicide or gun violence or cancer before. But the past two years of COVID and the triple pandemic have meant we’ve often lost more people, more quickly, than ever before. I know friends who’ve planned seven funerals since 2020, or lost four people they loved in one month.

And it’s been my experience that a lot of even my white disabled friends were uncomfortable with this kind of mass death faced by their BIPOC disabled friends. They lost people too, but it wasn’t quite at the same level. And they didn’t know how to deal with it when we did.”

Later on in the same section Leah Laksmi talks about the difference between their experiences with COVID – “death COVIDs” and other people’s (mostly white) experiences with COVID – “boring COVID”. I’m admitting my own privilege here – I’m one of the people who experienced mostly boring COVID, at least in terms of my personal life. While I know people who have gotten sick none of them have actually had a serious case or died from it. Which is probably why even at work we’re mostly back to normal. For some value of normal… we should all be thinking about what normal actually means.

Imani Barbarin of the blog Crutches and Spice has an great blog post on that subject: “You’re Never Getting “Normal” Back”

“We cannot afford normal—and it seems that only the privileged are the ones who can actually afford to return to it. To want normal says that you have identified all of the issues put on display and said, “I’m fine with that.” Unfortunately, the rest of us cannot be and never have been alright with normal. […]”

I know exactly how privileged I am in that I haven’t yet gotten sick with COVID, nor has anyone in my family died from it. At least not yet – given how the rest of my family has mostly gone “back to normal” it’s probably only a matter of time.

Edited May 2023

For various reasons I do not wish to discuss at this time I am no longer involved with Marked By COVID. As such I have removed all links to that group.

Another group I’ve been following is the COVID-19 Longhauler Advocacy Project which formed in 2020 and has become “an organization known for comprehensively advocating on behalf of the Long COVID community” – Long COVID is another thing people aren’t taking seriously enough. People don’t seem to realize that even if they’re lucky enough to survive COVID they could still end up with Long COVID symptoms. I know a handful of people who are now experiencing Long COVID – though not directly within my personal life.

I’ve also been following the People’s CDC and their reports about COVID levels as it’s become clear the official CDC can no longer be trusted to give an accurate picture of COVID. “The People’s CDC is a coalition of public health practitioners, scientists, healthcare workers, educators, advocates and people from all walks of life working to reduce the harmful impacts of COVID-19.” They’ve been posting weekly “Weather Reports” about COVID – the latest one is from December 25th.

Soon I’m going to write another post about COVID precautions that we should be taking but also about how those same precautions have disproportionately impacted various groups of people. Because both things are important to be aware of as we go forward with 2023. COVID isn’t over and how we handle it speaks to how we care about others. Meanwhile check out the additional readings and links below