Author: mczerwie

The Power of Communities of Care

Mae Czerwiec • March 26, 2023

During the AIDS epidemic, my aunt, MK Czerwiec, served as a nurse in the AIDS Unit at Illinois Masonic Hospital in Chicago, IL. Like any nurse, the stories of the terrible things she saw during her time are multitudinous, and the experience was rife with emotional heaviness. But unlike other nurses, she was encouraged to be creative, break the rules she’d learned in nursing school, and provide care to patients through non-traditional medical and non-medical methods (Czerwiec 2017). In the 1980s and 90s, at the height of the AIDS epidemic in the US, patients required more care than medicine alone could provide them.

Six years into the AIDS epidemic, the mortality rate was nearly 100% (France 2012). Doctors didn’t know what caused it or how it spread: it was new and terrifying. Affluent, otherwise healthy young men began showing up to emergency rooms with skin lesions that were hallmark signs of Kaposi’s Sarcoma, and pneumonia would kill them soon after (France 2012). As it became apparent that the disease had a disproportionate prevalence in LGBTQ+ populations, particularly men who have sex with men (MSM), anti-gay backlash ensued against victims of the disease– from laypeople to lawmakers, there were many who believed these men were being deservedly punished for their moral sin (France 2012). Even as municipal hospitals in hotspots like New York City became overwhelmed with AIDS patients, there were incentives not to diagnose the disease; after all, if it was diagnosed, the government and the medical establishment would have a duty to find a treatment (France 2012).

AIDS Incidence and Mortality in San Francisco. From “40 Years of AIDS: A Timeline of the Epidemic” by Lisa Cisneros at the University of California San Francisco.

In his book The Illness Narratives: Suffering, Healing, and the Human Condition, author Arthur Kleinman emphasizes that in our society, illness has meaning. It has significance. Illness is not merely something that happens to us, but something that we are. “[L]ike a sponge,” Kleinman writes, “illness soaks up personal and social significance from the world of the sick person” (Kleinman 1988, 31). In the case of the AIDS epidemic, patients were not only sick with a disease that was rapidly-progressing, disfiguring, and generally fatal within a few years, but they were made to believe that their illness was their own fault, and that they deserved both the physical suffering and the social disgrace that accompanied it. This is what Kleinman and others refer to as stigma, and for the LGBTQ+ community, it was almost as crippling as the epidemic itself. Historically, stigma described a physical mark of public disgrace, akin to the Star of David forcibly sewn onto the clothes of Jewish people by the Nazi Regime, although over time, stigma has come to refer to the shame more than the mark (Kleinman 1988, 169). Patients who died of AIDS in hospitals were often put in black trash bags, and some funeral homes refused to hold their services (France 2012). Even queer people who weren’t marked with the physical symptoms of AIDS, like Kaposi’s Sarcoma, were subject to the stigmatization that resulted from the disease. Battling both an incurable disease and an unfavorable public image, how were victims and advocates to respond?

The answer lies in forming communities of care.

My aunt, mentioned earlier, is a lesbian, and she saw part of her care for AIDS patients as a duty to her community. And a lot of AIDS nurses were lesbians– the TV series Pose on Hulu, which highlights Black and brown ballroom culture of the 1970s and ‘80s, features Sandra Bernhard playing the feisty and tenacious Nurse Judy– who also felt called to stand up for and support fellow queer people. But medicine was just one part of the AIDS care network. Also of importance was collective health advocacy, seen most notably in the work of the AIDS Coalition To Unleash Power (ACT UP), an AIDS activist group formed in New York City in the 1980s. One member described ACT UP as a group of “artists and hipsters” who came together to gain the scientific knowledge of AIDS and the virus that causes it (HIV) necessary to meet politicians and scientists at their level and push for real change (France 2012). They were eventually able to persuade Dr. Anthony Fauci and the NIH to allow lay AIDS activists to sit on their advisory boards and have an input in the process of AIDS research and drug development. The involvement of both gay and straight scientists and professionals who were willing to do this educational work also formed parts of these care networks. One activist remarked that he believed every AIDS drug that is available today has ACT UP at least partially to thank (France 2012). Without groups of diverse but like-minded folks coming together to provide a common good for each other, the already-delayed response to the AIDS epidemic would have resulted in devastating outcomes.

From the Museum of the City of New York. Photo by Lee Snider.

The power of care networks isn’t restricted to those with stigmatized illnesses like AIDS. The medical establishment is often hostile and ineffective for people of color, regardless of their perceived health status. In the 1970s, the Black Panther Party responded to this systemic neglect of Black patients by forming its own health program, concentrated in the local facilities known as the People’s Free Medical Clinics (PFMCs) (Nelson 2013). The clinics were created in direct response to the Party’s perception of the “circumstances surrounding illness” in the treatment of people of color, which resulted in their avoidable deaths at institutions of white medical power (Nelson 2013, 79).

Like ACT UP, the Black Panther Party was initially composed of laypeople, concerned citizens identifying as members of a marginalized group who had a thirst for activism but lacked the expertise to bring necessary resources to their respective communities. Part of the power of both organizations came from their ability to draw in professionals sympathetic to their respective causes who were willing to do the work of educating and supporting the ultimate goals of activists who may have been more personally invested in the cause. Most of these professionals offered their expertise on a volunteer basis; for example, University of Washington medical school students and faculty offered services to the Seattle-based Sidney Miller PFMC (Nelson 2013, 97). Once again, a diversity of skill sets, from organizing and advocacy to first-aid and education gave power and credibility to the health movement.

I think when we look back on these two health advocacy movements, it can be all too easy to relegate them to their respective moments in history. But it’s critical that we do not let these movements die with their founders– their struggles are not over. We know that Black people in the United States have significantly worse health outcomes than their white peers, particularly Black women of reproductive age (Hill, Artiga, and Ranji 2022). We know that there are over 35,000 new HIV infections in the US each year, with disproportionate effects on Black and Latinx LGBTQ+ communities (Kaiser Family Foundation 2021), and that LGBTQ+ rights are under attack every day– the ACLU is currently tracking 430 anti-LGBTQ+ bills in state legislatures (ACLU 2023). Thinking intersectionally, we know that all of these health risks are amplified for Black trans women and trans women of color. And we know what the answer is to these threats, because our communities have answered the call before.

In the last election cycle in my tiny hometown, the hot button issue was funding for public works, particularly budget allocations for local emergency services. One particular focus was on whether it was worthwhile to purchase a new ladder truck– devastating blazes are uncommon, opponents argued, and our small town’s funds would be better spent on other public goods; neighboring fire departments would be more than capable of providing us with their aid should we require it. But the supporters of the fire truck were adamant. Overnight, signs popped up in front yards up and down our little blocks: WE NEED OUR OWN TO SAVE OUR OWN! Perhaps the fire truck metaphor is silly, but this is what I think of when I think of health advocacy and activism. The work only gets done when those of us who are affected the most deeply rally together around a common cause. Change happens within communities. When we shout together, our voices echo.

References

  1. ACLU. 2023. “Mapping Attacks on LGBTQ Rights in US State Legislatures”. https://www.aclu.org/legislative-attacks-on-lgbtq-rights
  2. Czerwiec, MK. 2017. Taking Turns. University Park, PA: Penn State University Press.
  3. France, David, director. 2012. How to Survive a Plague. Sundance Selects. 109 min.
  4. Hegedus, Eric and Robert Rorke. 2019. “Sandra Bernhard: ‘Pose’ recalls horror of early days of AIDS”. New York Post. https://nypost.com/2019/06/21/sandra-bernhard-pose-recalls-horror-of-early-days-of-aids/
  5. Hill, Latoya, Samantha Artiga, and Usha Ranji. 2022. “Racial Disparities in Maternal and Infant Health: Current Status and Efforts to Address Them”. Kaiser Family Foundation. https://www.kff.org/racial-equity-and-health-policy/issue-brief/racial-disparities-in-maternal-and-infant-health-current-status-and-efforts-to-address-them/
  6. Kaiser Family Foundation. 2021. “The HIV/AIDS Epidemic in the United States: The Basics.” https://www.kff.org/hivaids/fact-sheet/the-hivaids-epidemic-in-the-united-states-the-basics
  7. Kleinman, Arthur. 1988. The Illness Narratives: Suffering, Healing, and the Human Condition. Basic Books.
  8. Nelson, Alondra. 2013. “The People’s Free Medical Clinics” in Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination. Minneapolis, MN: The University of Minnesota Press.

The Medicalization of Motherhood

Mae Czerwiec

I’ve heard the story of my birth hundreds of times. I think it’s a source of great pride for my mother. I was born a week after my due date in a large hospital close to home, but my mother certainly didn’t have the typical hospital experience. She still keeps in touch with her treasured midwife through Facebook, and cheerfully recalls the squats she did in her hospital room– she did not have an epidural, was never sedated or hooked up to any machines, and was allowed to walk around up until the time when she gave birth to me (without surgical intervention) at 9:03 pm on November 30, 2001. I was of average size and weight and healthy, spending no time in the NICU. Though I still have no desire to ever give birth myself, I’ve always thought of my mother’s story as charming, celebratory, and full of agency and support.

Childbirth

So it was jarring to come to find out that my mother’s story is not the typical one. Though one survey of mothers in California found that 74% of them were against interventions in childbirth unless medically necessary, only 5% of that same group reported giving birth with no major medical intervention (California Health Care Foundation 2018). Most of these women were immobilized (61%) or had an epidural (68%) (California Health Care Foundation 2018), which is a far cry from my mother’s robust lower-body workout. Furthermore, 31% of these women had a C-section (California Health Care Foundation 2018), despite the fact that the World Health Organization recommends that all of its member nations avoid Cesarean section rates in excess of 10-15% (WHO 2015). In the context of what we know of the many issues with US healthcare, I was surprised to find that high rates of C-section alone are not a uniquely American problem. In the past 20 years, C-section rates in Canada, Italy, and the United Kingdom have all been around 20%, Spain has seen a C-section rate of 26.4% in Catalonia alone, and in Brazil, the C-section rate has been nearly 36% (Johanson et al. 2002).

“…when caesarean section rates rise towards 10% across a population, the number of maternal and newborn deaths decreases. When the rate goes above 10%, there is no evidence that mortality rates improve.”

World Health Organization, 2015

Of course in countries with high infant mortality rates, it would be beneficial for more women to have access to obstetric care; however, the consensus of many recent studies seems to be that medical intervention in the case of low-risk pregnancies is unnecessary, and has the potential to do more harm than good. For example, C-sections have been shown to have a global impact on maternal mortality and morbidity (Phelan and O’Connell 2015). I can’t help but wonder how much of this problem is tied to our view of women’s bodies as factories for reproduction, in desperate need of oversight and regulation, and a still-widespread societal belief that women are somehow incapable of making their own choices. Even my mother, a staunch Catholic who opposes the pro-choice movement for abortion access, has to admit that she was privileged enough to enjoy more choice than most mothers in her birth experience.

Breastfeeding

And certainly the medicalization of motherhood doesn’t stop once a child has left the womb. I think of my mother’s best friend, a pediatric nurse practitioner in Chicago, who has recently begun a side business as a lactation consultant. This role allows her to extend her practice to the task of assisting mothers with their concerns related to breastfeeding. In the 20th century, when infant formula was introduced by drug companies, breastfeeding came to be seen (like other issues of female reproduction, such as menstruation) as an arena of female inadequacy: that mothers were incapable of producing enough breast milk to satisfy the nutritional needs of their growing children. Even today, writes author Jennifer Torres, “breastfeeding continues to be constructed as likely to fail, and therefore, in need of medical management” (Torres 2014). Breastfeeding is also a complex issue for reproductive healthcare and women’s bodily autonomy, since women have at different points in history faced both glorification and demonization for their choice to either breastfeed or not breastfeed.

“breastfeeding continues to be constructed as likely to fail, and therefore, in need of medical management”

Jennifer Torres, 2014
Parenting

Disturbingly, there doesn’t seem to be an end to the ways in which we medicalize motherhood. Societally, of course, we have a problem of parent-shaming, pitting the parenting style that works for one family against the perceived failure of another parent’s style, both in private and public spheres. I’m almost ashamed to admit that I’m currently watching the tv series “The Parent Test” on Hulu, where twelve sets of parents are presented as exemplars of their particular parenting “styles” and then put through “challenges” with their children and families to effectively determine which style does the best job of raising well-adjusted children. But aside from sensationalizing or merely judging other parents, we as a society have also medicalized parenthood. In one article, author Ara Francis writes that “Parenting, especially mothering, has become an anxious endeavor, characterized by pervasive self-doubt and guilt” (Francis 2012). Francis’s paper concludes that parents, especially mothers, are subject to increased negative labeling when their children have “invisible disabilities”, such as learning disabilities, developmental disabilities, mental health problems, drug addiction, or other medical problems, and she posits that this negative stigmatization is a direct result of the medicalization of childhood (Francis 2012). The particular burden on mothers is consistent with the theme present in the issues of both childbirth and breastfeeding: that women and their bodies are perceived in terms of deficiency.

“Parenting, especially mothering, has become an anxious endeavor, characterized by pervasive self-doubt and guilt”

Ara Francis, 2012
Solutions?

So where do we go for solutions? How can we ensure that more women’s experience of motherhood is autonomous and affirming? In terms of childbirth, authors Phelan and O’Connell present midwifery as a promising solution to combat medicalization, but still encourage collaboration between obstetric and midwife teams (Phelan and O’Connell 2015). In Torres’s article on breastfeeding, she emphasizes the role lactation consultants can play in the de-medicalization of breastfeeding, using these providers to examine the concept she describes as “medicalizing to demedicalize” (Torres 2014). And in Francis’s article on stigmatization and “anxious parenting”, she describes parental stigma as a “relational phenomenon” that thrives on the intersection of dominant cultural assumptions and institutions of medical authority (Francis 2012). Taken together, these three authors come to the conclusion that both incremental change and widespread cultural overhaul may be necessary to combat the medicalization of motherhood: we have a lot of work to do before my mother’s story seems mainstream.

In summary,

Solutions for the Medicalization of Motherhood
1. Interdisciplinary Teams of Providers
2. “Medicalizing to Demedicalize”
3. Challenging Cultural Assumptions
References

California Health Care Foundation. 2018. “Infographic: The Overmedicalization of Childbirth.” From Listening to Mothers in California survey. https://www.chcf.org/publication/infographic-overmedicalization-childbirth/#related-links-and-downloads

Francis, Ara. 2012. “Stigma in an era of medicalisation and anxious parenting: how proximity and culpability shape middle class parents’ experiences of disgrace.” Sociology of Health and Illness 34, no. 6 (July 2012): 927-942. https://onlinelibrary.wiley.com/doi/10.1111/j.1467-9566.2011.01445.x

Johanson, Richard, Mary Newburn, and Alison Macfarlane. “Has the medicalization of childbirth gone too far?” BMJ (Clinical Research ed.) 324, no. 7342 (April 2002): 892-895. https://doi.org/10.1136/bmj.324.7342.892

Phelan, Agnes and Rhona O’Connell. 2015. “Childbirth: Myths and Medicalization.” https://www.euro.who.int/__data/assets/pdf_file/0007/277738/Childbirth_myths-and-medicalization.pdf

Torres, Jennifer M.C. 2014. “Medicalizing to demedicalize: lactation consultants and the (de)medicalization of breastfeeding.” Social Science and Medicine 100 (January 2014): 159-166. https://www.sciencedirect.com/science/article/pii/S027795361300600X

World Health Organization. 2015. “WHO statement of cesarean section rates.” World Health Organization. April 14, 2015. https://www.who.int/publications/i/item/WHO-RHR-15.02