Cumulative Confirmed COVID-19 Cases

Tuesday, March 12, 2024

Julia Doubleday on The Deliberate Stigmatization of Long COVID

Julia Doubleday at The Gauntlet has an important essay titled Disabled people's exclusion from indoor spaces is a civil rights violation, not an annoyance

-----------

"Let’s start with the title.

Wrestling with my husband’s fear of getting Long COVID again” at NPR today right away frames the author’s problem as her “husband’s fear.”

"Not the unchecked, year-round spread of COVID-19.

"Not the national and international abandonment of disabled people and hundreds of millions of people with Long COVID symptoms.

"Not her social milieu, which refuses to understand or acknowledge that vulnerable people are at significant risk of harm from COVID infection.

"Not the press, which has spent several years manufacturing consent for recurrent, endless COVID infections.

"Not the rampant ADA violations of a society that has knowingly stripped millions of their ability to safely enter public spaces.

"Not the wholesale destruction of public health at the hands of a politically captured CDC.

"No, the problem she is struggling with is that her husband, who developed Long COVID symptoms after a 2022 infection, keeps asking her to take COVID precautions so he does not get reinfected and potentially become sicker and long-term disabled.

"Long COVID is a serious disease. Some of the biomarkers (objective measurements in the blood that differ from a “healthy” person) that researchers have identified include:

"I cannot know which of these underlying issues may affect her husband, but this context is critical to any story about the risk assessments currently being made by Long COVID patients. It is not “fatigue”. It is not “headaches.” It is a serious, common outcome of COVID-19 infection that has left millions of people in the US alone permanently unable to work. The severity and frequency of Long COVID is purposely obscured from public discussion as part of a continued political effort to normalize constant COVID exposure.

"People who take precautions to avoid COVID are making the wise decision to protect themselves and their families; they are also safeguarding their ability to work and earn money in a society that disposes of people who cannot produce. It is a rational decision; in the case of Long COVID patients, it is a necessary one.

"It is also, admittedly, a very difficult lifestyle to adopt and maintain. Difficult, not because of the precaution of disabled people, but because of the lack of precaution of the majority, who refuse to care whether disabled people live or die and refuse to participate in any mitigation efforts. Difficult because of state negligence and institutional misinformation. Difficult not only for the family members of those with Long COVID, but all the more so for those with Long COVID themselves.

"Contrary to the othering propaganda, people with underlying conditions actually do not love being isolated from public life, being unable to grab drinks in a bar, being unable to attend concerts, being limited in travel options, being excluded from conferences, reunions, and family events. Long COVID patients don’t relish being “locked up at home,” don’t want to “cling to a pandemic lifestyle,” and don’t enjoy the extreme limits imposed on their professional and personal lives.

"Most of all, no one relishes watching their loved ones react with annoyance and anger rather than solidarity and empathy as they attempt to survive a new normal designed to infect them. It is painful beyond imagination that so many- even close loved ones- are perfectly happy to cosplay normal even if that normal involves vulnerable groups’ long-term exclusion from public spaces. It is grief on top of injustice on top of dangerous physical harm.

"I’m going to draw the lens back and away from this particular woman who wrote this particular article. Her attitude is far from unusual and is the result of years of minimizing, pathologizing propaganda. The focus here should be about why this attitude is so common, what this attitude implies, and for what reason major media outlets choose to platform people complaining about their disabled spouses rather than our ableist society. 

"NPR’s decision to platform a piece about the difficulty of navigating life with a spouse who can’t dine indoors, instead of a piece about the difficulty of navigating a society that has made dining indoors unsafe for vulnerable groups, is just that- a decision, and a political one. It is part of an ongoing effort to cast those who cannot play along with the “back to normal” fantasy- those who are being harmed and killed by it- as weird, paranoid, crazy, annoying, and “the problem.”

"Long COVID is a major thorn in the side of the “back to normal” approach to COVID. While some people (appear) to recover well from COVID, many others suffer long-term post-COVID health problems. Not only that, but risk of Long COVID is cumulative; the more you are infected with COVID, the more likely you are to develop it. A recent study in Canada found that while 14.6% of Canadians who contracted COVID developed Long COVID symptoms (itself a staggeringly high number), that statistic reached 38% after three or more infections.

"You don’t have to be a mathematician to add these facts up into a pretty disturbing picture: people are being reinfected with COVID every year, on average. Risk of Long COVID increases cumulatively across infections. People with Long COVID are seriously ill with dangerous, biological disease markers. Put simply: the back-to-normal, ignore-COVID-away approach is a farce doomed to failure, and the existence of Long COVID patients is itself a political threat to the status quo.

"Long COVID is the faulty, load-bearing beam in the rickety pandemic denial superstructure. Were the public to grasp how common and how severe it is, the entire post-pandemic facade would come crumbling down.

"Therefore, as Long COVID patients become louder, as their presence becomes more undeniable, as their numbers grow, the COVID normalization project must pivot from attempting to disappear these victims to steadily stigmatizing them.

"This stigma takes many forms, but by and large it is a project aimed at pathologizing people with post-COVID health problems, portraying them as “crazy,” and presenting their increasing difficulties navigating our inaccessible society as an imaginary problem they made up, rather than an actual threat to their wellbeing in obvious violation of their basic constitutional rights.

"Pathologizing victims of state harm is nothing new; from the labeling of enslaved people who attempted escape as suffering from the affliction drapetomania, to the invention of hysteria to institutionalize women who defied strict gender roles, psychology has a long, storied history of being weaponized to justify oppression.

"While it is a scientific, documented fact that some people are long-term disabled by COVID and that COVID is spreading unmitigated in every public space, this information is conveniently omitted as the media continues to publish pitying personal essays about the supposed mental issues of those avoiding COVID.

"Instead of confronting the injustice of a “new normal” that excludes medically vulnerable people, NPR seeks to deny that this injustice exists at all. For this reason, they platform an individual who sees her husbands’ new social limitations as an irritation he is personally inflicting on her, rather than an institutional problem being inflicted on all of us.

"It is a classically neoliberal world view, one that places the onus of the difficult situation on the individual over the collective, that blames the sufferer rather than investigating the underlying root causes of the suffering. “My husband can’t dine indoors because every restaurant is currently violating the ADA” is not a piece NPR will ever publish; it is, however, both a more accurate summation of the problem, as well as one that invites action rather than acceptance.

"This piece builds its discussion atop several political beliefs that it treats as obvious truths: that everyone will be exposed to COVID in every public space from now on, that this is a problem disabled people must learn to navigate by making compromises about being exposed from time to time, and that the state holds no responsibility for either the mass disablement of Long COVID patients, nor for making public spaces accessible to vulnerable people again.

"All of the above are political opinions, not facts, and they are conservative, even libertarian beliefs that inherently deny the rights of disabled people to safety and accessibility. In other words, NPR is here arguing that the state should not be responsible for public accessibility, while encouraging its audience to view the victims of public inaccessibility as annoying and irrational.

"This article is not merely an upsetting look at an individual’s victim-blaming mindset about her husband’s indefinite exclusion from public spaces. It is a piece of propaganda intended to further the perception that demands for COVID mitigation are unreasonable complaints, rather than critical activism for basic public health infrastructure.

"The infrastructure that Long COVID patients desire, need, and indeed demand, like air quality improvements including upgraded ventilation and filtration, will benefit not only the clinically vulnerable, but everybody. The collective action required to achieve a future where we aren’t all slowly becoming sicker and more vulnerable is the same type of action we engage with as we demand all sorts of long-term changes, from an end to the usage of fossil fuels, to the end to the extermination of Palestinian children, to the end of transphobic and gender-based discrimination.

"This moment requires solidarity between those who have been affected by COVID normalization and those who have not yet been harmed. Instead, NPR and other media outlets encourage us to turn on one another and unleash the anger we feel at losing basic rights onto those who’ve been even more harmed than we have. It is not dissimilar to the mainstream efforts to turn poor native-born Americans against poorer immigrants, to turn people making minimum wage against people on welfare, to turn ciswomen against transwomen, to turn Asian Americans against Black Americans. All of these efforts shield and protect a state that immiserates all vulnerable groups; broken solidarity, in every case, harms both the targets and the perpetrators.

"The woman in the story may get her wish and return to indoor dining. That will not save her from recurrent COVID reinfections, nor from the eventual health problems that would surely follow her fifth, tenth, or fifteenth infection. The only thing that can truly get her what she wants- a world where she and her husband can safely live their 2019 lifestyles- is collective action, advocacy, and unwavering solidarity with her husband. We must all of us seek to address the brutal abandonment of our communities, not cry that we are less able to participate in it than our friends."

-----------

What a great column, and what a vindication to all of us who are COVID-cautious and COVID-affected! 

No comments: