Health activism

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.]

Life/Death | Health/Justice

| ldiedrich

Fall 2021

lifedeath-healthjustice-syllabus-fa21Download
[Image description: Screen grab from the film Wit. The camera looks down from the ceiling of Dr. Bearing’s hospital room. She lies unconscious on her bed at the center of the shot. Her nurse Susie leans over her and holds her head gently in her hands.]

One thing that can be said for an eight-month course of cancer treatment: it is highly educational. I am learning to suffer.

                        —Prof. Vivian Bearing in Margaret Edson’s Wit

In fact, the Hmong view of health care seemed to me to be precisely the opposite of the prevailing American one, in which the practice of medicine has fissioned into smaller and smaller subspecialties, with less and less truck between bailiwicks. The Hmong carried holism to its ultima Thule. As my web of cross-references grew more and more thickly interlaced, I concluded that the Hmong preoccupation with medical issues was nothing less than a preoccupation with life. (And death. And life after death.)

                        —Anne Fadiman, The Spirit Catches You and You Fall Down

To me, disability is not a monolith, nor is it a clear-cut binary of disabled and nondisabled. Disability is mutable and ever-evolving. Disability is both apparent and nonapparent. Disability is pain, struggle, brilliance, abundance, and joy. Disability is sociopolitical, cultural, and biological. Being visible and claiming a disabled identity brings risks as much as it brings pride.

                        —Alice Wong, Disability Visibility

I conceive of care as the way someone comes to matter and the corresponding ethics of attending to the other who matters.

                        —Lisa Stevenson, Life Beside Itself

In this course, we will explore big questions about life and death and health and justice. We will investigate these questions through several case studies, moving from experiences of ill and disabled bodies in the world to the way global events and structures affect those experiences, and back again. Our first series of case studies will look at various relationships within the institution of medicine: between doctors and patients, patients and nurses, doctors and nurses, etc. As we analyze these relationships, we will consider the way knowledge, power, and choice gets expressed in and through these relationships. Our second series of case studies will expand out from specific relationships within medicine to larger global events and structures that affect the health of peoples throughout the world, historically and in the present. In the most general terms, we are interested in being, doing, and becoming in relation to illness and disability experiences and events, therapeutic thought and practices, and clinical and caring institutions and spaces. We will explore biopolitical issues, including the social determinants of health and structural violence, to address why some people are at greater risk for illness and premature death than others. We will also explore disability justice as a practice of care. Some of our organizing questions for the semester include: Why and how are illness and disability political? What factors impact health? What constitutes good care? How can we improve access and deliver better care? 

Life/Death | Health/Justice syllabus

Illness-Thought-Activism: From HIV/AIDS to COVID-19

| ldiedrich
Gran Fury, SILENCE=DEATH, 1987, neon

I am reprising my seminar, Illness-Thought-Activism: From HIV/AIDS to COVID-19, this semester at Stony Brook as part of the first-year seminar program. This is a version of the course I taught in the Narrative Medicine MS program at Columbia in October. I think it’s kinda relevant.

Here’s the course syllabus and course description:

illness-thought-activism-syllabus-lds-102-sp21Download

This course will explore the conjunction illness-thought-activism in time. In particular, we will focus our investigations on the medical, political, and aesthetic responses to the HIV/AIDS and COVID-19 pandemics. We will use the historical example of the emergence of HIV/AIDS and the increasing politicization of the illness as a lens through which to examine the ongoing contemporary emergence of COVID-19. We will explore how these illnesses are treated in a variety of texts—medical, media, and activist documents, as well as literature, film, comics, and other forms of creative expression. In the most general terms, we are interested in being, doing, and becoming in relation to illness experiences and events, therapeutic thought and practices, and clinical and caring institutions and spaces. We will explore biopolitical issues, including the social determinants of health and structural violence that means some people are at greater risk for illness and premature death than others. Some of our organizing questions for the semester include: why and how is illness political?; what factors impact health?; what constitutes good care?; and how can we deliver better care? 

Illness Politics: independent living vs. personal responsibility

| ldiedrich

We are witnessing competing narratives of illness politics at work as Republicans attempt to repeal and replace the Affordable Care Act. What illness looks like and how we do illness politics is contested terrain. Consider recent protests on Capitol Hill against the GOP’s Better Care Reconciliation Act draft bill. Led by disabled activists who are members of ADAPT, a disability rights organization known for its direct action tactics, the protests garnered mainstream and social media attention as images of police removing activists in wheelchairs from Senate Majority Leader Mitch McConnell’s office circulated widely. Other images showed police separating ADAPT activists from their wheelchairs to arrest them. Such images of the use of force against a vulnerable population helped drive home ADAPT’s message that this bill was a matter of life and death for some. As one sign proclaimed, “Medicaid is life” for many people with disabilities. Activists like Stephanie Woodward, Gregg Beratan, Anita Cameron, and Bruce Darling put their vulnerable bodies on the line in order to generate media coverage about what was at stake—in the most material terms—in the ongoing debates about healthcare in America.

Stephanie Woodward being arrested at Senator McConnell’s office

The protests on Capitol Hill were just one of many demonstrations organized by ADAPT in what they are calling a #SummerOfADAPT. As Congress recessed for the 4th of July holiday, ADAPT activists across the country sought to communicate directly to GOP senators at their home offices about the devastating impact of Medicaid cuts. In Denver, activists conducted a sit-in at Senator Cory Gardner’s office for 58 hours in an attempt to tell the senator their concerns. Senator Gardner never met with the activists, and they were eventually arrested. Activist Carrie Ann Lucas was charged with trespassing and, because she refused to help police operate her motorized wheelchair, she was also charged with interference. Lucas’s noncooperation fits into a long history of nonviolent civil disobedience as an effective form of embodied resistance. In this case, her chair is not simply an instrument used by her body, but part of her body that went limp as the police tried to remove and arrest her.

Carrie Ann Lucas: Without Medicaid I could not live in the community.

ADAPT and its direct action political tactics are not new. Although many origin stories of this radical form of health activism start with the founding of the AIDS Coalition to Unleash Power (ACT UP) in New York City in 1987, ADAPT pre-dates ACT UP by at least a decade. While many have made direct links between ADAPT and ACT UP, taking a longer view of health activism suggests ACT UP is a link between earlier health activist movements, including those associated with the women’s liberation movement, Civil Rights groups like the Black Panther Party and the Young Lords, anti-psychiatry, and environmental justice. This longer view would also include the Independent Living Movement (ILM), which advocates for disabled people to live in their communities not in nursing homes or other institutions, to make decisions about their own lives and care, and in general articulates an everyday ethics of self-determination.

The ILM was started by Ed Roberts in Berkeley in the early 1970s, but the movement quickly spread beyond Berkeley to other less counter-cultural milieus. The second Independent Living Center was the Atlantis Community founded by the Reverend Wade Blank in Denver in 1975. ADAPT emerged out of this local Denver disability activist environment that Atlantis cultivated and first garnered widespread media coverage in 1978 for protests calling for wheelchair-accessible public transportation. The ADAPT acronym initially stood for American Disabled for Accessible Public Transport. As the group broadened the political issues it engaged in, ADAPT maintained the acronym but adapted its meaning. Now ADAPT stands for American Disabled for Attendant Programs Today. The alternative meanings of the acronym reflect the importance of both freedom of movement in the public sphere and access to good care and assistance in both public and private spheres as necessary to enable full citizenship and participation for disabled people.

Just two days after the dramatic protests on Capitol Hill, Vice President Mike Pence articulated an alternative version of illness politics, emphasizing personal responsibility and the market as keys to good health and healthcare. Pence gave his speech in Colorado Springs at the 40th anniversary celebration of the Christian multimedia organization Focus on the Family. Like ADAPT, Focus on the Family emerged in Colorado in the late 1970s, but rather than drawing inspiration and political tactics from the new social movements of the late 1960s and early 1970s, Focus on the Family offers an alternative conservative cultural politics that goes hand-in-hand with neoliberal economic policies seeking to privatize public services, policies that gained steam in the 1980s and are predecessors of many of today’s austerity measures. In this privatized and privatizing cultural politics, the family, not the community or state, is expected to care for its own, and women are expected to function as primary carers in families. In this context, Pence used illness as metaphor for individual and social weakness, and personal responsibility and free-market competition became the solution to problems of bodily, and by extension, moral weakness.

The rhetoric of personal responsibility denies the fundamentally interdependent condition of society. It relies on a simplistic eugenics logic that suggests whole groups of people might be deemed unfit to participate and left to die. The ADAPT activists know much is at stake in this battle over healthcare. For these activists illness and disability are not metaphors. They are real material conditions of life that require creative responses at the level of both the individual and society. They challenge us to adapt—not simply our bodies and our selves, but our society—so that everyone can participate in political and social life to the fullest extent possible. What we are seeing in this #summerofADAPT is democracy in action around the question of what kind of society we want—one that would enable the many to flourish and live valuable lives, or one that protects and enables the few?