#illnesspolitics

reading notes: illness politics as a practice of love

| ldiedrich

I am trying to write these reading notes quickly, almost as I read. Unlike on twitter, this format/platform feels less like notation and more composed like a blog post or review. One strategy is to post before I finish something, as I did on twitter and then update the post with additional thoughts. Reading notes as process notes, perhaps? Basically, I’m still figuring this out.

Right now, I am reading Steven W. Thrasher’s The Viral Underclass, which I would describe as an articulation of illness politics as a practice of love. I use “articulation” in Stuart Hall’s double sense of the term: as both a form of expression where the form of expressing matters and as linkages between certain elements and conditions that are possible but not inevitable or essential.

[Photo of Steven W. Thrasher’s book The Viral Underclass: The Human Toll When Inequality and Disease Collide. In the middle of the cover is a red COVID-like virus (with spikes). At the center of the virus is a black human head in profile that appears to create ripples outwards to the edge of the virus.]

Thrasher’s chapter “From Athens to Appalachia” links AIDS activism and care practices in Greece and West Virginia through stories of how a viral underclass is produced and maintained in these places, such that the underclass is a space as much as an individual or group of people. But Thrasher also shows, importantly, how people living in these conditions respond to their situation in creative and caring ways. Thrasher makes connections between people and communities and forms of activism—for example, from harm reduction programs responding to an HIV outbreak in Athens after the Greek economic crash to programs in West Virginia responding to outbreaks of HIV, Hepatitis C, and overdose that were modeled on the Athens programs. I’d add another historical connection, which is that Greek immigrants in the early 20th century emigrated to West Virginia to work in the mines and steel mills of the Ohio River valley, including members of my Greek grandmother’s family who ended up in Wheeling. The anti-immigrant, anti-trans, and HIV stigma that led to the violent death of Greek AIDS activist and Zak Kostopoulos (aka drag queen: Zackie Oh) shows how such stigmatizing violence must forget this other history of Greeks on the move searching for a better life amid economic hardship and political conflict.

Thrasher warns us in the introduction that many of the protagonists of his stories of the viral underclass will die, telling us to “consider grabbing some tissues” (18). The portraits here are deeply moving. Thrasher has a way of capturing community activists in action by providing touching details about their character and work along with careful analysis of the structural violence they are up against. I needed those tissues when I read Thrasher’s chapter on Lorena Borjas, a trans activist from Jackson Heights, Queens who was HIV positive and worked for decades providing resources for Black and Brown and trans sex workers in Queens to help them practice safer sex, beat addiction, avoid arrest, post bail, and get free from oppressive situations. Thrasher shows how Borjas’s activist philosophy and practice was to show up for others and convince others to join her in showing up for others. Showing up for and with others sounds simple but is of course incredibly difficult to sustain. Yet, Borjas sustained this practice of love right up until she became sick with COVID in March 2020. Thrasher tells the heartbreaking story of her illness and death, noting “There was a sad irony at the end of her life. Lorena always showed up with people.” “But at the end of it all,” he continues, “except perhaps for the respiratory technician and nurses on duty as she drew her final breaths, Lorena Borjas was physically alone. [Her partner] Chaparro, [friend] Cecilia [Gentili], [fellow trans activists] Chase [Strangio], [Lynly] Egyes, all the thousands of people she’d given condoms and syringes and food to on Roosevelt Avenue—none of them could be with her to hold her hand in the final transitional moments of her earthly journey” (149). Many tributes followed Borjas’s untimely death at just 59, including from Alexandria Ocasio-Cortez, who lauded Borjas as the “mother of the trans Latinx community in Queens” (149). Thrasher’s work also situates Borjas’s activism in Queens, while linking it beyond Queens in time and space in and through his book about The Viral Underclass. This is what I call #IllnessPolitics—a way of countering what Thrasher calls “viral vulnerability” through transhistorical and transnational connections between multimodal forms of activism and movements.

[Photo of Lorena Borjas smiling and seated with her hands folded on her lap. She is wearing a beautiful bright red shawl and colorful kimono-like dress with a yellow and white flower in her hair. Photograph by Guillermina Hernandez / Courtesy TransLatin@ Coalition.]

Disregarding the health of others

| ldiedrich

In a press release announcing that her husband had tested positive for COVID-19 following the lockdown during the pro-Trump mob’s attack on the Capitol, Massachusetts Representative Ayanna Pressley did not mince words. She called out her “callous Republican colleagues” for refusing to wear masks in the “crowded and confined space.” Other lawmakers who were exposed and infected during the lockdown also called out their colleagues for their “callousness” and dangerous “inability to accept facts” on the benefits of wearing masks to contain the spread of coronavirus. Pressley expressed anger at her colleagues’ “arrogant disregard for the lives of others” and linked such disregard to the “criminal negligence of the current administration in responding to the crisis” that had, at the time of her statement, “claimed the lives of over 380,000 Americans.” 

CNN's Jake Tapper reports. 
Published at: 06:06 PM, Mon Jan 11 2021

Pressley’s angry denunciation got to the crux of the issue: a willful disregard for the health and lives of others has formed the basis for denying and downplaying the deadly and disabling effects of COVID-19. Since the beginning of the pandemic, and encouraged by President Trump and other Republican lawmakers, we have witnessed people proudly and nonchalantly express their utter disregard for the suffering of others, especially elderly and disabled people, and the people who care for them. By refusing to wear masks and practice social distancing, people have sought to demonstrate—to show by action and display of feeling—how much they don’t care that people are dying in unprecedented numbers.

Disregard is both a verb and a noun. It refers to an action (“to pay no attention to” and “to treat as unworthy of regard and notice”) and a condition (“the state of being disregarded”). Disregard is not a passive thoughtlessness; rather, it suggests willful inattention. One chooses to ignore the suffering of others, both because one can and because doing so makes that suffering invisible. Pressley added the modifier “arrogant” to amplify the point she was making about the insouciant attitude of her Republican colleagues. But all disregard is an expression of power that implies arrogance.

In her book Regarding the Pain of Others, published in 2003, a year before her death, Susan Sontag identified the many opportunities “for regarding—at a distance, through the medium of photography—other people’s pain” as a key component of modern life. Sontag was of course renowned as one of our foremost critics of the photographic image and its circulation, as well as for her polemic against illness as metaphor, among other critical interventions. It is instructive to return to Sontag’s work in the present moment in which images are readily and easily manipulated, and in which denialism and disinformation circulate widely through social media. Sontag was interested in how we see and consume the pain and suffering of others. She was also interested in what images of death we see and don’t see. 

Susan Sontag, Regarding the Pain of Others

In her earlier essay on the cultural politics of illness, Sontag analyzed the phenomenon of illness as metaphor for individual and social weakness. Sontag’s short polemic chronicles a long history of the metaphorical uses of illness in literature, popular culture, and politics. Her motivation for writing Illness as Metaphor was not simply to explore a changing cultural and political landscape of illness. Instead, Sontag proposed to elucidate the uses of illness as metaphor with the goal of purifying the experience of illness of metaphorical thinking. For Sontag, this was the “most truthful way of regarding illness—and the healthiest way of being ill.” The act of regarding (showing interest, care, consideration, respect, and esteem), and the possibility of mis- or dis-regarding, links Sontag’s early work on illness with her later work on the pain and suffering of others.

In the COVID-19 pandemic, what Sontag described as regarding at a distance has been necessitated by the highly contagious character of the virus. Because of this, hundreds of thousands of people have died in isolation from their loved ones. Our hospitals are over-flowing with COVID-19 patients, even as their suffering remains largely invisible or highly mediated by audio-visual technologies like Facetime and Zoom. Healthcare workers have become witnesses to extreme suffering and death in a way that is not typically part of their everyday responsibilities. Yet the trauma our healthcare workers have experienced is also ignored and even denied. Passively regarding at a distance has turned into an active disregarding of the health and care of others. 

Indeed, this disregard for the health and care of others has become politicized. In the COVID-19 pandemic, disregard has been wielded and weaponized. Images of Republican members of Congress refusing to wear masks in the lockdown at the Capitol, even when asked to do so, enacts this politics of disregard: I do not have to care about you. The act of not caring and the image of mocking disregard work together to communicate a political message: See me not care about others.

The mask is a visible sign of regard for others. It communicates an understanding that one’s body is not autonomous from but interdependent with the bodies of others. That some would fixate on the requirement to wear a mask as somehow restricting one’s bodily freedom is a most cynical disregard for the specific practices of public health and healthcare in particular and a parsimonious notion of the social contract more generally. The politics of disregard suggests that seeing oneself in relation to others is a sign of weakness. This is a debate about the kind of society we want to live in: one that prioritizes the care of others, especially the most vulnerable, versus one that politicizes disregard. As Representative Pressley made clear, the effects of such a politics of disregard are criminal and deadly.

Illness as metaphor, 2016

| ldiedrich

In case you missed it: at a rally in Pennsylvania, Donald Trump made fun of Hillary Clinton’s recent bout of pneumonia, imitating her stumbling into her car at the ceremony commemorating the 15th anniversary of the attacks on 9/11 in New York City. Faced with criticism about his performance in the first presidential debate, Trump tried to turn the conversation about his own temperament and preparedness for the presidency back to speculation about “Hillary’s health.”

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There have been many stories about Clinton’s health this election cycle—rampant speculation, mainly among those already not supporting her, that she is hiding a secret illness (Parkinson’s, traumatic brain injury, epilepsy have all circulated as possible diagnoses), which, if revealed, so the thinking goes, would lead Americans to conclude that she could not be president. On twitter, the hashtag #sickHillary purportedly provides ample evidence that Hillary is not well, feeble even, requiring help getting in and out of cars, walking up steps, needing someone by her side at all times should she fall or find herself unable to speak. Her physical illness is believed by some to be an outward sign of her moral depravity–#sickHillary reveals #crookedHillary. Following Clinton’s “coughing fit” while campaigning in Ohio over Labor Day weekend, rightwing media outlet Breitbart News called Clinton a “Choke Artist,” going for a triple entendre suggesting illness politics, sexual politics, and electoral politics all rolled into one.

The phenomenon of illness as metaphor for individual and social weakness is not new, as Susan Sontag trenchantly argued in Illness as Metaphor, her now classic 1978 essay on the cultural politics of illness. I have written extensively on how narratives of illness can be read as symptomatic of wider cultural categories, including race, gender, class, and sexuality. This is what I call illness politics, and the 2016 U.S. presidential election is a case in point of the way illness politics is informed by and inseparable from sexual, racial, and class politics. While it’s true that every four years the question of the health of the candidates becomes an issue in presidential politics, there is clearly something more going on this year. I would go so far as to say that in this election cycle we have frequently been treated to illness politics standing in for sexual, racial, and class politics.

illness-as-metaphor-coversusan-sontag-circa-1975-by-peter-hujar1978-01-26-600x0-c-default

Sontag’s short polemic chronicles a long history of the metaphoric uses of illness in literature, popular culture, and politics. Sontag’s motivation for writing Illness as Metaphor was not simply to explore a changing cultural and political landscape of illness. Instead, with her already by then legendary bravado, Sontag proposed to elucidate the uses of illness as metaphor with the ultimate goal of purifying the experience of illness of metaphoric thinking. For Sontag, this was the “most truthful way of regarding illness—and the healthiest way of being ill.”[1] And yet, despite her call for the de-metaphorization of the experience of illness, in many respects the opposite has happened in the four decades since she published her polemic: illness is now more metaphorized than ever.

In the 2016 race, both candidates have sought to show the other as unfit for the presidency. Since even before he was candidate and Republican party nominee, Trump has relied on what I would describe as a eugenics logic that portrays his opponents as weak, sick, and neurotic. For Trump, illness is a useful metaphor to suggest an America in decline. Trump has characterized President Obama as a weak man whose presidency has threatened the strength of the nation itself. His birther conspiracy theories don’t simply seek to question whether Obama was born in the United States; they also work to draw attention to his mixed race and mixed national heritage, conjuring the specter of degeneration. A similarly indirect association is at work in attempts to suggest Clinton is unfit. Her wealth of experience seems to preclude a bluntly sexist dismissal of her as unqualified, but not the circulation of rumors that she is suffering from a degenerative disease so far kept hidden from most Americans. This hidden illness narrative also works to further the impression Trump wants to give that Clinton is keeping other secrets from Americans too.

Of course, Donald Trump has also been diagnosed by his opponents as unfit. If the weak Obama and sick Hillary illness narratives conjure an older eugenics logic, the attack on Trump’s fitness draws on a newer narrative—that of the personality disorder. Disability activists and scholars have rightly expressed concern that diagnosing Trump’s bad behavior as mental illness is stigmatizing to people who actually suffer from mental illness.[2] And yet, in a fascinating reversal of stigmatization, it appears that the diagnosis of Trump’s purported narcissistic personality disorder is not without its benefits for the candidate himself. In pop psychology and culture, such powerful if unpleasant personalities have been linked to success, especially in the business world. In a recent interview, Trump described his temperament in business terms as “the single greatest asset I have,” turning a potential weakness into a purported strength.

It is helpful to consider the uses of illness as metaphor in 2016 within the context of a longer history of illness politics. In one of his “Doctor’s World” columns in the New York Times published a month before the 1992 presidential election, Lawrence K. Altman, M.D. discussed what the article’s title identified as the “disturbing issue of Kennedy’s secret illness.” Altman noted that “many Presidents have suffered serious illness while in the White House. All too often they, their families and aides have misled, if not lied to, the public about their health, with the malady becoming known only many years later.” Altman goes on to discuss a then just-published report in the Journal of the American Medical Association in which pathologists who were at John F. Kennedy’s autopsy revealed that Kennedy’s adrenal glands were “almost completely gone,” confirming that he had Addison’s disease, a diagnosis he and his family had always denied, including during the 1960 presidential election.[3] Altman maintains that if the public had known in 1960 that Kennedy had Addison’s, he might have lost what was a very close election to Richard Nixon.

Altman points out that since 1960 there has been an “enormous expansion of coverage of health issues” in the media.[4] I contend that the 1960s and 1970s is also the moment when illness (both mental and physical) begins to figure as a site of political struggle, though it has been largely overshadowed in contemporary interpretations of the period by a focus on gender, race, and sexuality as sites of struggle. Many have noted that Trump’s call to “make America great again” is an attempt to hearken back to a 1950s America that is more fantasy than reality. The illness politics of the 2016 presidential election suggest a wish by some to go back in time to before 1960, to before the rise of the new social movements that made it possible for us to have the first African American president and possibly the first woman president. Hearkening back to before 1960 when America could hardly imagine the reality of an African American or  woman president should also remind us that in 2016 we have yet to adequately trouble the ableist assumption of illness as disqualifying.

 

[1] Susan Sontag, Illness as Metaphor (New York: Vintage, 1978), 3.

[2] See, for example, David M. Perry, “‘What if Trump really is crazy?’” Accessed at: http://www.thismess.net/2016/08/what-if-trump-really-is-crazy.html

[3] Breo, Dennis L., “JFK’s Death: The Plain Truth from the MDs Who Did the Autopsy,” JAMA: The Journal of the American Medical Association 267, No. 20 (May 27, 1992): 2794.

[4] Coverage of health issues has expanded even further since Altman was writing in the early 1990s, what with the rise of the cable news industry in the 1990s and social media in the 2000s. Altman’s column is an early example of a doctor commentariat, a phenomenon that has also featured prominently in the 2016 election, for example, in the extensive coverage of Dr. Mehmet Oz’s “examination” of Trump’s health data.