Category: The Culture of Health and Medicine

Would it shock you to learn that only 15% of a physician’s medical decisions are based on scientific evidence (Pfeffer & Sutton 2006)? It’s a somewhat shocking revelation, and one that has become a hot topic in medical communities in recent years. When even medical decisions are frequently based on obsolete knowledge and past experience, it shouldn’t be shocking that societal conceptions of wellness and health are commonly based on aesthetics and heavily influenced by commercial interests (Pfeffer & Sutton 2006, Winant 2023). Nonetheless, there are evidence-based measures of health that are worth pursuing (Johnston, et al 2009). Today, individuals are in need of a balanced and holistic approach to healthy living. By looking to the past for models of “self-care,” modern day wellness culture can find ways to evolve to better promote the health of individuals. 

Critiques of Modern Wellness Culture

Juice cleanses, meditation, gym memberships in excess of $1,000 annually—all are at the forefront of present day “wellness.” It is inaccessible, ineffective, and creates the illusion that the mind and body can be a “perfectly self-regulating machine” (Winant 2023). This illusion perpetuates feelings of personal inadequacy, detrimental to mental well-being and having the opposite intended effect of wellness culture (Blei 2017).

“Health has become both a goal and a social anxiety”

Health as a Meaningful Social Practice, Crawford 2006

The commercialization of health has permitted non evidence-based methods of pursuing wellness to proliferate. Moreover, it has allowed objectively unhealthy practices to persist in the name of profits. Highly processed foods have been found to share pharmacokinetic properties with addictive drugs (Schulte 2015). “Wellness” practices that have risen to popularity, such as “liquid chlorophyll” and the “internal shower” drink, have questionable health benefits (Rogers, et al 2022). Influencers seeking personal gains propel the masses in pursuit of their shining example towards products that do little more than drain their bank accounts. 

Perhaps a critique applicable to modern culture in general, but certainly relevant to modern pursuits of wellness, is the natural desire to seek out the path of least resistance. In fact, a psychological study conducted by the University College London found that taking the path of least resistance is hard-wired into our brains (UCL 2017). It is this attitude that may be foundational to the widespread existence of corporate “wellness” propositions that provide few true benefits. Seeking an easy or quick fix, particularly one that allows us to maintain other unhealthy habits, is a temptation that is difficult to avoid, and is one that is detrimental to modern pursuits of wellness. 

Positive Elements of Past Models of Wellness

“Act up! Fight back! End AIDS!” (France 2012). The signature slogan of the ACT UP organization encapsulates the passion of its members. Their relentless pursuit of progress enabled their success. In crisis situations, individuals are willing to make drastic sacrifices in order to recapture the status quo. Members of ACT UP quit their jobs in order to devote significant time to advocacy and self-education (France 2012). More recently, amid the COVID-19 pandemic, individuals made drastic alterations to their lifestyle and daily habits in order to “slow the spread.” These individual acts of self-sacrifice aided in the social pursuit of health and wellness. 

The “health consciousness” movement of the 1970s brought into focus new attitudes of self-help through diet and exercise (Crawford 2006). While this permitted the eventual rise of commercial interventions in mental and physical well-being, individual agency over wellness is an essential component of shaping a healthier society. Perhaps one of the most empowering views of personal health, the health consciousness movement viewed individual wellness “as a matter of common sense,” rejecting the now seemingly heavy dependence on corporate interventions (Crawford 2006). Importantly, however, this attitude must coincide with a true ability to achieve objective standards of wellness in order to avoid inculcating feelings of defeat and hopelessness. 

Looking Forward

While it is clear by looking at examples from the AIDS epidemic and COVID-19 pandemic that individuals can be passionate in pursuit of health and wellness, it is also conspicuous that this is not an omnipresent attitude. In pursuit of a more effective wellness culture, this passion must be ignited with the aim of extinguishing present deficiencies. Individuals must confront the realities of human nature, and take the initiative to educate themselves of objective standards of health and evidence-based means of achieving and maintaining them. Redefining and limiting what it means to be “well” on objective standards creates a finish line—a visible model for healthy living. This alone can help many to “live well,” and can reduce the anxieties associated with a culture that implores never-ending improvement and incites competition to be the most aesthetically “well.”

On a societal level, effort must be put forth to make healthy living more accessible. Though large corporations have taken the initiative to install fitness centers and provide quality food to their employees, accessible means of healthy living are not so readily available to large swaths of the population. Many of the barriers are quite obvious. Low wages keep many working long hours to make a living, leaving little time for routine exercise. High prices of fresh meats, seafood, fruits, and vegetables are prohibitive to individuals and families on tight budgets. As a result, the United States has abnormally high rates of obesity and chronic disease (Tikkanen & Abrams 2020). Effective means of reducing these barriers are not so obvious. Perfection is a difficult thing to attain. Nevertheless, it is at least in some ways comforting to know what we do not know; for it provides hope that with effort we can progress towards a more positive wellness culture and a healthier tomorrow. 

Works Cited

Blei, D. (2017, January 4). The False Promises of Wellness Culture. JSTOR. Retrieved March 25, 2023, from https://daily.jstor.org/the-false-promises-of-wellness-culture/ 

Crawford, R. (2006). Health as a Meaningful Social Practice. Health: An Interdisciplinary Journal for the Social Study of Health, Illness, and Medicine, 10, 401–420. https://doi.org/10.1177/1363459306067310 

France, D. Director. (2012). How to Survive a Plague [Film]. Public Square Films and Ninety Thousand Words. 

Johnston, D., Propper, C., & Shields, M. (2009). Comparing Subjective and Objective Measures of Health: Evidence from Hypertension for the Income/Health Gradient. Journal of Health Economics, 28(3), 540–552. Retrieved 2023, from https://www.sciencedirect.com/science/article/pii/S0167629609000320. 

Pfeffer, J., & Sutton, R. (2006, January). Evidence-Based Management. Harvard Business Review, 63–74.

Rogers, K., LaMotte, S., & Marples, M. (2022, December 28). The Tiktok Wellness Trends We Should and Shouldn’t Take into 2023, According to Experts. CNN. Retrieved March 25, 2023, from https://www.cnn.com/2022/12/28/health/tiktok-trends-best-worst-2022-wellness/index.html 

Schulte, E. M., Avena, N. M., & Gearhardt, A. N. (2015). Which foods may be addictive? The roles of processing, fat content, and glycemic load. PloS one, 10(2), e0117959. https://doi.org/10.1371/journal.pone.0117959

Tikkanen , R., & Abrams, M. (2020, January 30). U.S. Health Care from a Global Perspective, 2019: Higher Spending, Worse Outcomes? Improving Health Care Quality. Retrieved March 27, 2023, from https://www.commonwealthfund.org/publications/issue-briefs/2020/jan/us-health-care-global-perspective-2019 

University College London. (2017, February 21). Humans are hard-wired to follow the path of least resistance. UCL News. Retrieved March 27, 2023, from https://www.ucl.ac.uk/news/2017/feb/humans-are-hard-wired-follow-path-least-resistance 

Winant, G. (2023, March 24). A Radical Critique of Wellness Culture. The New Republic. Retrieved March 24, 2023, from https://newrepublic.com/article/148296/barbara-ehrenreich-radical-crtique-wellness-culture 

The responsibility of caring for her 104-year-old mother has fallen squarely on Kathleen Leonard’s shoulders. Due to her close proximity to her mother’s home and the fact that her siblings live out-of-state, Leonard helps her mother with basic caregiving tasks daily. These include therapy appointments lasting around 2 hours and routine evening showers at exactly 8 p.m. While Leonard is grateful that she still gets to spend time with her mother, the emotional stress and burnout of caregiving is taking a toll on her mental health. This emotional rollercoaster worsens when she visits her grandchildren in New York; the guilt of physically leaving her mother in Houston doesn’t allow her to fully relax and enjoy her time with other family members. “I love my mother, but it doesn’t minimize the stress,” she said.⁵ Leonard’s story reflects the struggles that many Black caregivers face– while roughly 19.3% of American adults act as caregivers, Black caregivers report higher rates of intense caregiving and suffer a bigger impact from Covid-19 than other racial groups.¹ Cultural dynamics further complicate caregiving in Black communities, placing more responsibility on family members to take care of loved ones.

“I love my mother, but it doesn’t minimize the stress.”

Kathleen Leonard

Impact of Covid-19

Pre-pandemic, caregiving for adult family members was already more commonplace in Black families than in white families. In fact, 18% of Black women reported caregiving compared to only 12% of white women.⁴ Similar to the gender makeup of caregivers for all races, Black women take on the brunt of caregiving work.⁵ The pandemic both exacerbated stress for existing caregivers and forced more women to become caregivers, with an additional 11% of Black female KFF survey respondents reporting that they started or picked up additional caregiving duties for family members during the pandemic.⁴

Covid-19’s health risks and disruption of work habits played a big role in the pandemic’s negative impacts on Black caregivers. Black workers and other workers of color were much more likely to be on the frontlines of the pandemic, which added the stress of having to keep working while simultaneously caregiving during their few hours spent at home.¹ When considering the fact that Black Americans are less likely to have received at least one vaccine dose than Latinx or white Americans, the fear of bringing home illness to a physically compromised loved one adds to existing caregiving stress.¹ 

The pandemic also caused upset in the dynamics of homes with adult caregivers– the massive disruption of routines made it difficult for many caregivers to help family members readjust to a new way of life. Such as in the case of Sabrina Scott, a 56-year-old Black woman who was the primary caregiver for her maternal grandmother through the pandemic, disrupted routines may have contributed to the health decline of her grandmother and other adults who depended on caregiving.¹ The pandemic’s disproportionate health, financial, and work-related effects on the Black community directly impacted the mental and physical health of both Black caregivers and their loved ones they looked after.

It Takes a Village

“Healthcare providers aren’t patient, don’t listen and tend to make assumptions about African Americans and Blacks.”

Anonymous respondent to American Society on Aging survey

According to the American Society on Aging, Black caregivers are less likely to have undergone formal training or enlist the help of paid caregivers/care facilities.² This can be due to multiple reasons, such as the fact that there is a stigma against entrusting the care of loved ones to others outside of family, friends, and community members. Due to a historical bar of access and subsequent poor interactions with medical staff, many Black families are deterred from the traditional medical system of caregiving. When attempts to use the traditional system are made, 56% of surveyed Black caregivers report some or a great deal of difficulty coordinating with health care professionals such as doctors, nurses, and service workers.² A respondent to the aforementioned survey included the sentiment “Healthcare providers aren’t patient, don’t listen and tend to make assumptions about African Americans and Blacks,” exemplifying the reason why loved ones who cannot advocate for themselves are not commonly left in the care of medical professionals.²

This cultural attitude towards refusing formal caregiving assistance was noticed by Sabrina Scott, who felt the added pressure to take care of her grandmother herself. Her family resisted a higher level of care for both her maternal and paternal grandmothers, essentially saying, “We don’t do that.”

“We meaning Black people,” Scott further explained.¹ Overall, informal sources of support such as friends, family, church congregations, and other community members are much more common for Black caregivers who enlist additional help.² 

“We don’t do that. ‘We’ meaning Black people.”

Sabrina Scott

Cultural practices play a large role in the dynamics of Black caregiving– both in positive and negative ways. The value placed on community and family can help provide additional support networks and often justifies the reason family members are willing to make sacrifices to care for their loved ones. While roughly half of the respondents to a National Alliance for Caregiving survey reported that they felt they had no choice in caregiving, the majority said they found an important sense of purpose or meaning in their role (more so than white and Asian respondents).³

However, cultural factors can also have negative impacts. Black caregivers work the most unpaid hours of any race, averaging 31.4 hours weekly, and 54% of Black caregivers provide high intensity care.¹ This is likely due to the reluctance to enlist formal medical services to assist in caregiving, although the cultural mistrust of such services is justifiable. Cultural generational differences can also create tension in households, which adds to caregiver stress. While Millennials are more likely to be open about mental health issues, the deeply ingrained stigma about mental health in the Black community makes discussing mental health a point of contention for many Black seniors.⁵ The role that cultural dynamics play in Black caregiving is important to consider when trying to integrate healthcare and formal support workers into caregivers’ support networks. 

Conclusion

Moving forward, it is essential that an effort is made to regain and establish the Black community’s trust in medical professionals, particularly those that work in long term care or assisted living sectors. Healthcare workers must continually check in on the mental and physical health of Black caregivers, and all formal support workers must be educated on how they can begin to heal the divide of mistreatment and mistrust. Partnering with faith-based or community-based organizations to spread the word about assistance for caregivers would be a step in the right direction.² While family and community holds an incredibly important position in many Black communities, caregiving is still labor.

Works Cited

Personal Family Experience Caring for a Loved One

A few years ago, my grandmother was diagnosed with primary progressive aphasia, which is a rare neurological syndrome that affects the ability to communicate. The first symptom my grandmother experienced was losing the ability to speak, so she communicated by writing down her thoughts. Over time, she lost the ability to write as well. Eventually, it became apparent that my grandmother could not understand what other people were saying to her. During the final few years of her life, my grandmother could no longer perform daily tasks such as going to the bathroom or feeding herself. 

During the early years of my grandmother’s disease, my grandfather took care of her. He assisted her as she tried to communicate with others and helped her navigate the world. When my grandmother’s condition started to worsen, my aunt stepped in to provide additional assistance and care. Ultimately, my grandfather and aunt decided it was best to put my grandmother in a nursing home to have professional nurses and caregivers help care for her.

Although my grandfather and aunt still spent a lot of time caring for my grandmother while she was in the nursing home, they did not have to spend all hours of the day watching over her and tending to her needs. However, many people in the U.S. are not able to put their loved ones in nursing homes or hire extra help, whether it may be due to financial or cultural reasons, and are forced to spend all their time and energy acting as unpaid caregivers.

Statistics of Unpaid Caregivers in the U.S.

About 20 percent of the U.S. adult population, or about 50 million U.S. adults, provides unpaid care to an adult over the age of 50. Over 75 percent of these unpaid caregivers are women. Most unpaid caregivers spend the same amount of time working as a caregiver that people spend working a full-time job. Additionally, many of these caregivers are employed or are raising their own children at the same time. It is estimated that caregivers provide about 470 billion dollars in free labor each year.

The vast majority of unpaid caregivers provide care to a relative. A few unpaid caregivers provide care to a non-relative, such as a friend or neighbor. Some of the tasks that unpaid caregivers perform include preparing meals, cleaning, assisting with dressing and bathing, and providing transportation to and from medical appointments. It is important to note that race and ethnicity play a large role in the makeup of unpaid caregivers in the U.S. African Americans provide the most hours of unpaid adult care per week, followed by Hispanics, then Asian Americans, and finally white Americans according to an AARP report.

Providing unpaid care takes a mental toll on the caregivers, and it causes a financial strain. Providing unpaid care for multiple hours a week results in impaired self-care and increased depression and psychological distress. Also, family caregivers spend over 7,000 dollars annually, equating to 26 percent of their income, on providing care to a senior loved one on average. In addition, about 22 percent of caregivers report using all their short-term savings, while 12 percent say that they went through all their long-term savings while providing care for elderly parents at home according to an AARP report.

The Effects of Covid-19 on Unpaid Caregivers

“The coronavirus pandemic has revealed many problems in our health system, and few more starkly than the way it both undervalues and relies on caregivers.”

Kate Washington, The New York Times

Covid-19 has placed an even greater strain on unpaid caregivers than before the pandemic. An example can be seen with Sabrina Nichelle Scott, a black woman who left her job in 2016 to become the primary caregiver for her grandmother Lillian, who had dementia. Scott had developed a good system of caring for her grandmother until the pandemic hit. Once Covid-19 came into play, Scott had to provide round-the-clock care in her grandmother’s Harlem apartment because the outside world became too risky. Lillian refused to wear a mask, which confined Scott and her grandmother to the small Harlem apartment. For the first few months of the pandemic, Scott did not get any breaks from caring for her grandmother. As a black woman, she felt even more pressure to be an intensive caregiver due to black culture and the resistance from other family members to the idea of getting more skilled care for Lillian. Lillian eventually died in March 2021, and although Scott is glad to have been able to help her grandmother, she reports being traumatized from the experience. 

Scott is not the only unpaid caregiver whose mental health was affected from caring for a loved one during the pandemic. According to a survey conducted by the CDC, unpaid adult caregivers had higher rates of anxiety disorder and depressive disorder symptoms compared to all respondents, and unpaid adult caregivers had higher rates of seriously considering suicide. In addition to affecting many unpaid caregivers for older adults, the Covid-19 pandemic has resulted in a greater demand to provide care for children due to the closure of schools and daycares, and most of this responsibility has fallen on women. These women also reported higher rates of mental strain, such as depression.

Conclusion

The U.S. has millions of unpaid caregivers that suffer mental and financial burdens in silence, and people of color are disproportionately affected by the need to act as an unpaid caregiver. The U.S. government needs to act to support unpaid caregivers. Not many caregivers can pay for additional help or put their loved ones in a nursing home like my family was able to do for my grandmother who suffered from advanced primary progressive aphasia. In order to relieve some of the burden felt by unpaid caregivers who have to provide intensive care for their loved ones, the U.S. government needs to create programs and provide money to these caregivers.

Works Cited

Courage, Katherine Harmon. “America Isn’t Taking Care of Caregivers.” Vox, Vox, 4 Aug. 2021, https://www.vox.com/22442407/care-for-caregivers-mental-health-covid. Accessed 26 Mar. 2023.

Family Caregiver Alliance. “Caregiver Statistics: Demographics.” Family Caregiver Alliance, https://www.caregiver.org/resource/caregiver-statistics-demographics/. Accessed 26 Mar. 2023.

Mayo Clinic Staff. “Primary Progressive Aphasia.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 27 Dec. 2018, https://www.mayoclinic.org/diseases-conditions/primary-progressive-aphasia/symptoms-causes/syc-20350499. Accessed 26 Mar. 2023.

Ranji, Usha, et al. “Women, Work, and Family During COVID-19: Findings from the KFF Women’s Health Survey.” Kaiser Family Foundation, 22 Mar. 2021, https://www.kff.org/womens-health-policy/issue-brief/women-work-and-family-during-covid-19-findings-from-the-kff-womens-health-survey/. Accessed 26 Mar. 2023.

Samuels, Claire. “Caregiver Statistics: A Data Portrait of Family Caregiving.” APlaceforMom, 2 Dec. 2022, https://www.aplaceformom.com/caregiver-resources/articles/caregiver-statistics. Accessed 26 Mar. 2023.

Schoch, Deborah. “1 In 5 Americans Now Provide Unpaid Family Care.” AARP, 18 June 2020, https://www.aarp.org/caregiving/basics/info-2020/unpaid-family-caregivers-report.html. Accessed 26 Mar. 2023.
Washington, Kate. “50 Million Americans Are Unpaid Caregivers. We Need Help.” The New York Times, The New York Times, 22 Feb. 2021, https://www.nytimes.com/2021/02/22/opinion/us-caregivers-biden.html. Accessed 26 Mar. 2023.

Washington, Kate. “50 Million Americans Are Unpaid Caregivers. We Need Help.” The New York Times, The New York Times, 22 Feb. 2021, https://www.nytimes.com/2021/02/22/opinion/us-caregivers-biden.html. Accessed 26 Mar. 2023.

Examining the impact of the early stages of COVID-19 on health autonomy and ideals

The heart of the COVID-19 pandemic is over. Due to low infection and mortality rates, the pandemic is no longer deemed a public health emergency by the Department of Health and Human Services. Though much of this success is attributed to effective vaccines and treatments, personal efforts like isolation and mask-wearing also mitigated the impacts of the virus. These actions were once espoused before medical interventions were widely available, and they emphasized personal responsibility over health. This messaging regarding COVID-19 safety underscored health autonomy, but this mentality became a slippery slope in terms of excessive health consciousness and unrealistic ideals promoted via social media. 

Increasing Health Autonomy

In the advent of COVID-19, the primary messaging from health authorities such as the Centers for Disease Control (CDC) and the World Health Organization indicated that each person was in control of their own virus prevention. You had the power to protect yourself by social distancing and washing your hands, and if you contracted the virus, that was due to a failure on your part to follow the safety measures. It followed that this sentiment of responsibility over one’s personal health expanded into avenues beyond COVID prevention. A hyper-awareness of individual health and wellness grew early in the pandemic, exacerbated by the lack of access to outside medical services. With an inability to seek professional care, we became our own doctors. Crawford’s claim that “personal responsibility for health is widely considered the sine qua non of individual autonomy and good citizenship”  applies to our widespread focus on how we could best protect ourselves and those around us by adopting the most healthy practices (Crawford, 2006, 402).

“Today, the common assumption is that health must be achieved.”

Robert Crawford (Crawford, 2006, 402)

These practices manifested themselves in numerous ways. From at-home workouts to wearable technology use, methods of improving and tracking physical health became predominant. Acknowledging that quarantine could lead to a sedentary lifestyle, governmental organizations heavily promoted the importance of physical activity, further intertwining the political and private sphere via health consciousness (Crawford, 2006, 403). Regular exercise was also advertised for its mental health benefits in combatting the isolation associated with social distancing, along with practices like mindfulness activities and meditation. These actions were highlighted as things that one can do without risking contact with COVID, underscoring solitary actions that one can take over their health. 

Social Media and Self-Improvement

In addition to the push from governmental and health organizations for an increased health focus, social media was also a significant promoter of self-care throughout the pandemic. When I think of social media during the first month of lockdown, I am immediately reminded of the rampant TikTok health trends, particularly the exercise challenges like those from fitness influencer Chloe Ting. Teenage girls would participate in Ting’s exercise videos, like “Get Abs in 2 WEEKS” and “Do This Everyday To Lose Weight ” and post their body composition results. These videos about lifestyles centered around exercise and nutrition encouraged at-home healthy behaviors among millions. However, they also promoted unrealistic body expectations and the attitude that anyone can make their body look like Chloe Ting’s as long as they have the discipline to do so. Similar to Barbara Ehrenreich’s analysis of 1970s exercise culture, social media during COVID heavily promoted physique as  “a status symbol” and fitness as a “culture that inflicts ‘steep penalties for being overweight’” (Winant & Gallagher, 2018).

The promotion of these activities, however, was by those who could afford the time to focus on their self-care. When these social media videos went viral, it created the illusion that everyone was using their quarantine as the opportunity to be productive in self-improvement. In reality, COVID-19 took away many’s abilities to focus on their health. This was especially true for at-home care workers, as “over one in ten women report[ed] that they [had] new caregiving responsibilities as a result of the pandemic” (Ranji et al., 2021). Many of these caregivers were not able to seek outside forms of stress relief and social support, causing physical and mental health repercussions (Harmon, 2021). In fact, a CDC survey found that “40 percent of caregivers for adults reported anxiety or depression symptoms” throughout the pandemic (Harmon, 2021). While social media advertised quarantine as free time allotted for self-care, only those with privilege could use it as so. This further contributed to social media as a source of unrealistic expectations and lifestyles related to health during the pandemic. 

“It is only the wealthy who have the resources to maintain the illusion of an integral and bounded self, capable of responsible self-care and thus worthy of social status.” 

Barbara Ehrenreich in “Natural Causes” (Winant & Gallagher, 2018)

The Lasting Influence

At the beginning of lockdown, COVID considerably impacted our perception of health autonomy, and the effects persist today. Speaking from personal experience, I am much more cognizant of my efforts to avoid sickness than before the pandemic. I have always attempted to prioritize sleep and minimize stress levels, but I am now aware of how these efforts aid my immune system in warding off disease. Additionally, plagued by the aforementioned motivational lifestyle videos on my social media feed, I adopted a rigid exercise regimen to keep myself in shape at the beginning of quarantine. This contributed to a hyper-awareness of my body’s conditions. I know of many that have had similar experiences, and I have attempted to let go of this self-consciousness since coming to college. Though the stress of individual responsibility over healthy behaviors did wonders in reducing the viral impacts of COVID-19, the long-lasting effects in terms of health consciousness and unrealistic ideals persist today.

References

Crawford, R. (2006). Health as a meaningful social practice. health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 10(4), 401-420. 10.1177/1363459306067310

Harmon, K. (2021, August 4). America isn’t taking care of caregivers. Vox. Retrieved March 26, 2023, from https://www.vox.com/22442407/care-for-caregivers-mental-health-covid

Ranji, U., Fredericksen, B., Salganicoff, A., & Long, M. (2021, March 22). Women, Work, and Family During COVID-19: Findings from the KFF Women’s Health Survey. KFF. Retrieved March 26, 2023, from https://www.kff.org/womens-health-policy/issue-brief/women-work-and-family-during-covid-19-findings-from-the-kff-womens-health-survey/

Winant, G., & Gallagher, S. (2018, May 23). Barbara Ehrenreich’s Radical Critique of Wellness Culture. The New Republic. Retrieved March 26, 2023, from https://newrepublic.com/article/148296/barbara-ehrenreich-radical-crtique-wellness-culture

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).

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.

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.

“Spouses are central in supporting and coercing one another to obtain healthcare and these dynamics are shaped by gender and couple type”

(Reczek 566)

One of the most striking things about the culture of healthcare and medicine is the overmedicalization of women’s bodies compared to the passive medicalization of men’s bodies. In numerous instances, primarily related to reproductive health, women’s bodies have been a hub of the overextension of medicine. In these cases, medicine can interfere with natural processes of the female body when it’s not necessary and not wanted by the women themselves. On the other hand, this overmedicalization is not seen with men’s bodies. Rather, when a problem arises, men and society have pushed medicine, through passive medicalization, to come up with solutions. When reflecting on this and other course material, I was really curious about the connection that overmedicalization and passive medicalization have with caring for others and the role women play as healthcare advocates in heterosexual relationships. In addition to other factors, it seems that because women’s bodies and health are so medicalized, they are more hyper-aware of medical needs compared to their partners.

Medicalization of Women’s Bodies

The overmedicalization of women’s bodies can be seen most prominently in reproductive health. As we discussed in class, the overmedicalization of childbirth is a prime example of how medicine has interfered with a natural process in a way that is not exactly necessary. Many maternity care experts have acknowledged that medical interventions are not entirely necessary for childbirth and can actually increase risk (CHCF). Not only do these medical interventions, like not being able to walk around and being forced to lay in a supine position make childbirth harder, it can also make it less safe (CHCF). On top of this, medical resources end up being wasted during childbirth on things that are not needed (CHCF). Because medicine has interfered so much with women’s bodies and natural female processes, women have likely become more aware of every part of the health and body. Therefore, I think they may be more inclined to seek medical intervention when necessary because they have been conditioned to believe that everything is a medical process in some way.

Medicalization of Men’s Bodies

Contrastingly, men’s bodies have not been medicalized in the same way. Because men’s bodies have not been medicalized in the same way as women’s, there is more confusion amongst men and the medical field whether some of the issues that afflict them are truly biological problems. For instance, the creation of Viagra as a treatment for erectile dysfunction came out of what is called passive medicalization, where people pushed for this drug and dysfunction to be considered something in the realm of biomedicine. Men and their partners sought medical intervention in the case of ED because it is a social problem and physicians may have been uninvolved or minimally involved in the past (Carpiano 443). Because of our social and cultural views regarding normal sexual function, a need for Viagra was created and pushed for. Therefore, factors outside of the medical field are responsible for the creation and push for Viagra rather than the medical field intervening in what is likely a largely normal process of aging (Carpiano 447). Evidently, men sought out medical intervention in ED because of cultural norms, thereby demonstrating that men have not been as conditioned like women to automatically view everything as medical problem. Instead, medical intervention was sought because of societal pressures and personal insecurity.

Potential Effects on Care Relationships

The difference in the way that medical intervention is sought between men and women due to the different medicalization of their bodies I believe manifests itself in the care relationships we see in heterosexual couples. Even though a large number of factors play into women taking on the role of healthcare advocate for both themselves and their male partners, it seems that the overmedicalization of their bodies may be a leading reason why women tend to take on that role. Various studies have shown that “women in both heterosexual and lesbian relationships do more care work for a sick spouse than men in gay or heterosexual relationships” (Reczek 557).  While men still occasionally perform care work, it is not in the same manner as women and is often more instrumental, as Reczek describes (Reczek 564). This lends itself to women often coercing their male partners into seeking medical help for issues. This repeats the similar cycle of ED, where it does not seem like it is the men themselves believing that they have a medical issue but society and their partners telling them that there is something that biological intervention can fix. As Reczek notes, even if men recognize that they are sick, they often don’t take the next step in obtaining medical care. If female partners did not coerce or make their male partners insecure about certain aspects of their health in an effort to get them to see the doctor, then men might not seek medical intervention at all.

Conclusion

When reflecting on these readings and the culture of healthcare and medicine, t appears that the overmedicalization of women’s bodies has led to their increased care work in some way. There should be more of a split between both men and women caring for their bodies, regardless of societal or medical pressures. While I think it may be too late to completely change the role that women play in being healthcare advocates for both themselves and their male partners, if less focus was put on women’s natural body processes and more focus was put on men being their own healthcare advocates, then perhaps we would see a change in the dynamics of these relationships. However, I do not want to encourage medicine to stay away from women’s bodies completely as much about women’s health has been learned in the last century. Yet, I think that the emphasis can be lessened and there can be an effort to understand women’s bodies without necessarily medicalizing every part of it.

Works Cited

Carpiano, Richard M. “Passive medicalization: The case of viagra and erectile dysfunction.” Sociological spectrum 21.3 (2001): 441-450.

“Infographic: The Overmedicalization of Childbirth.” California Health Care Foundation, 21 Aug. 2019, https://www.chcf.org/publication/infographic-overmedicalization-childbirth/#related-links-and-downloads.

Reczek, Corinne, et al. “Healthcare work in marriage: how gay, lesbian, and heterosexual spouses encourage and coerce medical care.” Journal of Health and Social Behavior 59.4 (2018): 554-568.