Control in Healthcare: History and Reclamation of Bodily Autonomy

This is the introduction and first installment of a five-part series, Reclaiming Control: The History and Future of Choice in Our Health, examining how healthcare in the US has been built on the principle of imposing control over body, mind, and expression. However, that legacy stands alongside another: that of organizers, healers, and care workers reclaiming control over health at both the individual and systems levels. Published in five monthly installments from July to November 2022, this series aims to spark imagination amongst NPQ‘s readers and practitioners by speaking to both histories, combining research with examples of health liberation efforts.

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Last week, as announcements that the Supreme Court had overturned Roe v. Wade roiled my phone, a flood of emotions flowed through my internal neural network as well as the external network I was connected to—millions of us processing together in real time.

Despite knowing for months if not years that such a Supreme Court ruling would arrive, the news was still shocking: sparking collective and individual fury at being ignored, subdued, and overridden, as well as grief for the past and anxiety about what the future might now hold.

But what I felt most, deep in my gut, was a sharp and terrifying loss of control.

The truth is, when it comes to my body—that thing with which we have our most intimate relationship (and particularly for women of color, often our most complicated relationship)—I know that feeling all too well.

I experienced loss of control in a pediatrician’s office, as my doctor peered at me disbelievingly, dismissing my fatigue as “teenage girl angst” (it turned out to be the symptom of a severe, undiagnosed case of mononucleosis that landed me in the emergency room). I felt it again when an insurance company hit me with a five-figure bill after a scary, unexpected medical procedure and demanded immediate payment. Most recently, I remember the dread of the earliest days of the pandemic, alone in my apartment, trying to make sense of the painful headlines.

As a public health practitioner and researcher, I have spent my career working both inside healthcare systems and with community-based organizations, fighting to hold healthcare institutions to transparency and different ways of work. Throughout those 16 years, I have heard many harrowing experiences—denial of care, lack of informed consent, explicit racism and xenophobia, medical bankruptcy—echoed across movement spaces and repeated in the narratives of women and gender nonconforming folks of color across the country. Despite inhabiting our own bodies every day, when we seek to make choices around counsel and care, we are frequently questioned, misdiagnosed, condescended to, harmed, or even left to die.

Unfortunately, this present-day reality is just the latest manifestation of a longstanding legacy of control that is fundamental to the design and delivery of healthcare in the United States. This system surrounds even individual clinicians, care workers, and healers who seek to look after us with heartfelt compassion and skill (and who, especially in the past 2.5 years, have done so at risk to themselves). It has been shaped by complex layers of history: racialized capitalism’s reduction of human bodies to commodified objects; patriarchy and religion working lockstep to dehumanize women and rigidify gender roles; and the weighting of professional over lived experiences. Each of these forces shapes our reality of and debates about what it means to control our own voices, minds, and bodies—and, in turn, to have control over our very being.

 

The Body as Object: Intersecting Histories of Oppression

In The Birth of the Clinic, which traces the rise of the medical gaze and the detached clinification of the body in the late 18^th century, Michel Foucault shares French doctor and politician Francois Lanthenas’ reflection on the relationship between liberty and health. “Man will be totally and definitely cured only if he is first liberated…if medicine could be politically more effective, it would no longer be indispensable medically. And in a society that was free at last, in which inequalities were reduced…there would no longer be any need for academies and hospitals.”

In 2022, of course, we are nowhere near this idyllic scenario of widespread liberation, although there is a long legacy of organizing and movement building that has pulled us ever toward it. Poverty, structural racism, and other forms of systemic oppression are root causes of health inequities, therefore—as Foucault points out—a healthcare system designed primarily to treat illness—as opposed to the social causes of illness— could only ever serve as a band-aid. Indeed, by prioritizing the “medical gaze,” which turns people into objects of study, healthcare itself perpetuates those same oppressions.

In the late 1700s, British settlers opened almshouses and asylums as places of last refuge and hospice for the poor, those with disabilities and chronic illness, and the elderly. Medical history literature outlines how these asylums, which were typically run by religious and charitable organizations, were characterized by poor healthcare and living standards and often placed patients of color into harmful conditions, despite ostensibly providing them care. This devaluing of the human experience undergirds much of our national dialogue about and experiences of health and choice today.

As white supremacist medical racism of the 1800s coalesced against a backdrop of slavery and Indigenous genocide, “science” was deployed to embed falsehoods about Black and Indigenous people into the national consciousness—such as categorizing runaway attempts by slaves as a “curable” disease. Inhumane, coercive medical experimentation on people of color was justified via recourse to myths about Black people’s brain size and high pain thresholds, myths that still permeate medicine today. This early era of medicine, explicit in its attempts to control large segments of the population, morphed during the Jim Crow era into state-sanctioned medical projects such as the Tuskegee Experiment, in which incarcerated Black men were used as objects with which to study syphilis, and into private sector exploitation, such as the use of stem cells taken from patient Henrietta Lacks without her knowledge or consent, which went on to become foundational to biological research.

A core component of control in the healthcare system involves control over the bodies of those who can birth. Throughout the first half of the 20^th century, BIPOC women and women with disabilities experienced forced sterilization on a mass scale, with the Supreme Court upholding in 1927 a state’s right to sterilize people designated as “unfit to procreate.” Far from a historic phenomenon, this practice has continued into the present day, with women who are incarcerated or detained for immigration purposes particularly affected.

Today, we see the products of these histories in our maternal mortality crisis, as mothers of color, particularly Black mothers, experience the hazardous impacts of structural racism both in and outside the medical system. Even in the shift that healthcare is now making towards acknowledging and investing in social determinants of health such as food, housing, and transportation, medicalization—i.e., when nonmedical problems become defined and treated as medical problems—is common.

As advocates have pointed out, many new efforts in the social determinants of health (SDH) sector deploy surveillance data and tracking of BIPOC communities to generate profits or justify algorithms. Virginia Eubanks, author of Automating Inequality, ties this trend to our country’s history dating all the way back to the almshouses. Eubanks writes, “Technologies of poverty management are not neutral. They are shaped by our nation’s fear of economic insecurity and hatred of the poor.”

What these histories make clear is that, since our country’s founding, choice and control have been juxtaposed in our philosophies and practices of health: choices made by one set of people with political and economic power to control so many others.

 

The Body as Multitudes: A Counter-History of Resistance  

Perhaps the most flummoxing thing about this history is that so much of our health and healing already feels out of our control. Stripping away the social complexities and constructs, we all—as people and caregivers—experience the ups and downs of living in mortal bodies (and minds) that we do not completely understand.

Not all cultures, of course, strive to have such an iron grip on the body. White-dominant, Western societies like the United States frequently view death as a final, medically defined state, and therefore healthcare as a tool to prolong life. On the other hand, non-Western cultures, dating back thousands of years, often consider the condition of the physical body to be more cyclical and impermanent.

But liberation as an aspect of wellbeing is universal across humans: the vulnerable desire to thrive, to be autonomous, to live fully. And so, it is heartbreaking and dehumanizing when—as has happened across the centuries with scientific experimentation and reproductive rights—wellbeing is not only obstructed but actively taken away.

Yet other stories run alongside this history of oppression, stories of reclamation and healing. For centuries, women and gender nonconforming people of color (and their allies) have fought in our country and globally to wrest back control over who and what shapes health.

Over the course of the next few articles in this series, we will delve into different corners of that resistance space, exploring organizations that are working across its many branches. These branches are:

• Imagining and building alternative healing spaces unrooted from white supremacy and capitalism

In Baltimore, where I live, there is a long legacy of community members who have built outside of traditional systems in order to preserve bodily autonomy and traditional visions of healing. The Village of Love and Resistance in East Baltimore, for example, uses a community ownership and investment structure alongside a radical organizing model to create spaces of traditional healing as well as local wealth building.

Leaders in the healing justice movement, as well as healers of all kinds who are working to bring ancestral and other ways of knowing to health (even amidst the noise of the commercialized, white-dominated “wellness” industry) also continue to build their own systems. Harriet’s Apothecary, a self-organized healing community that seeks to build independence from the medical industrial complex, brings a Black, queer, feminist analysis to its programming, which includes advocacy, apprenticeship, healing spaces, consulting, political education, and more.

• Power-building to shift control over decision-making, dollars, and data from the healthcare industry to communities

Alongside those who are building outside of systems, many are also working to fundamentally reclaim the mechanisms of our traditional healthcare systems by introducing accountability and shifting control from healthcare institutional leaders to community members visioning new ways of health.

Shift Health Accelerator, a distributed leadership network that grew out of the Robert Wood Johnson Foundation’s Culture of Health Leader program, partners with organizations to explore community ownership over healthcare decision making, funding flows, and data. Through democratic processes like participatory grant-making and a learning network focused on political education and history, the organization is developing standards for healthcare accountability.

With the exception of the LGBTQ+ community’s organizing and political mobilization to achieve victories in HIV/AIDS treatment, targeting control within the healthcare system has historically not been a large-scale focus of power-building entities. The Center for Health Progress in Colorado is working to build a base of Latinx immigrants as well as allied healthcare professionals who can hold health systems and other healthcare stakeholders accountable for historical control dynamics with respect to immigrant health and other issues.

• Decolonizing the education and leadership practices of healthcare leadership

A fundamental mechanism of control in healthcare has been that of the clinician-patient relationship, through which many past harms have been enacted. A new generation of healthcare professionals is grappling with this legacy, decolonizing education and the paternalism that has pervaded medicine. People Power Health brings an organizing analysis to healthcare professionals and clinicians in particular, deploying trainings and civic participation to enlist them in health justice efforts.

The Freedom School for Intersectional Medicine & Health Justice, based out of the Bay Area, is working toward a medical and public health praxis that centers the experiences of marginalized women and communities of color. Through organizing, institutes, political education syllabus, and more, they are working to flip existing paradigms of research and education for healthcare and public health practitioners.

• Crafting new (and resuscitating ancient) narratives of healing and wellbeing

Finally, underlying this practical work is another component of systems change: narrative change. Authors like Rupa Marya and Raj Patel, whose book Inflamed: Deep Medicine and the Anatomy of Injustice explores the legacy of colonialism in healthcare, represent a wave of scholars, researchers, journalists, and others exposing the stories that prop up control within healthcare.

Organizers, too, are working to shift the dominant narratives surrounding health in the United States. SisterSong, a Southern-based, reproductive justice collective, is redefining the birth justice movement by centering birthing as a fundamental human rights issue and by building power across a variety of frontiers. This collective also centers the role of art through its Artists United for Reproductive Justice program, which creates and disseminates reproductive justice artwork that can deepen activism and reshape dominant culture.

In this time, many of us are looking for ways to imagine together—to look beyond the status quo to a paradigm in which liberation and health are one and the same, rather than forced apart. These examples, and many others, provide a vision and showcase a creativity that can illuminate a way forward, collectively.