What Future for Health Activism?

When I wrote the conclusion to my book, Food Allergy Activism: Parenting and the Politics of Care, I did so against the backdrop of the COVID-19 pandemic in the fall of 2020. This, of course, threw into sharper relief how contingent and unnecessary the cruelty of privatized, family-linked care is in the United States.¹ There have been moments in the pandemic when things became so bad that it seemed as though this system must change. In small and too-limited ways, some things did change. In my home state of New York, for example, an executive order from Governor Andrew Cuomo mandated that health insurers cover the cost of COVID-19 testing. However, in the US Congress, the cross-party belief that families ought to be solely responsible for procuring the conditions for life led to the expiration of the first round of expanded unemployment benefits at the end of July 2020. Since January 2021, the Biden administration did little to protect people with either acute or disabling long COVID-19, other than reopening expensive health insurance marketplaces.

Here, in a faster-paced fashion, are the same politics of care that govern food allergy activism. Families and individuals are treated as autonomous economic and moral units that ought to manage themselves. Governmental support operates on the assumption that everyone who counts is able to participate in the relevant markets (like the health insurance and job markets), and the only action that is needed to safeguard health is to tweak the markets in minor ways. In the service of this belief, as of September 25, 2020, over 203,000 people have died from COVID-19, and as many as 25 percent of US children do not have enough to eat.² By the final days of March 2021, as I completed revisions to my manuscript, the death toll stood at 548,867 and was on pace to triple before the start of summer.³ As of this writing, it is 1,059,390.

For health activism to be done otherwise would require a serious reckoning with the interlocking politics of family and health. Health activism that relies on the figure of the mother as defender of children to get things done both relies on and reproduces the gendered organization of care within the family. It also utterly fails in a situation like the COVID-19 pandemic, where the elderly were the first to be hit hard with high mortality rates.

Yet appeals to the claim that mothers are the best advocates for children’s health persist in movements like the food advocacy movement because they are effective at interpersonal, local, state, and national levels. The stereotype of mother as selfless hero is sometimes the most expedient tool available to those seeking change. It is therefore understandable that advocates would turn to it to accomplish their goals. But reliance on this archetype provides an out for lawmakers, regulators, insurers, and employers; it provides them with a way to avoid taking responsibility for improving care infrastructures through policy and government funding. Rights to health can be addressed selectively or partially by design because there is always a family member—a mother, or, in the case of elder care, a daughter—expected to be available to take up the slack if institutionalized mechanisms of care are incomplete.

Relying on mothering and motherhood as a tool for systemic health care change also risks playing into racist pasts about who could be considered an ideal and worthy mother. As Patricia Hill Collins writes, the “traditional” US family ideal is a “privileged exemplar of intersectionality,” where systems including gender, race, class, and nation do not exist “as separate systems of oppression” but rather “mutually construct one another.”⁴ As Collins also notes, the figure of the family is politically adaptable; it has been conscripted to a variety of political aims that otherwise would seem to be in conflict, such as its use by “the conservative right and Black nationalists alike … to advance their political agendas.”⁵

In every context in which it is enlisted to do ideological or political work, the family inserts logics of hierarchy and domination and portrays them as natural and unmovable social facts. Why, then, should the family be a resource in advocacy and activism, when the point of action is to challenge hierarchies and systems of domination, to change the status quo, and to expand freedom and opportunity for those who have so far been denied them?

A meaningful reckoning with the politics of the family as a mediator of health and care would seek to reform or abolish more social institutions than just health care. Dorothy Roberts’s body of work vividly examines how medical racism has often operated via the regulation of biological and social reproduction and, by extension, of family composition.⁶ Family composition has in turn been enforced through the manipulation of cash and noncash state benefits, including housing, food benefits, and health care, to poor families, who are also disproportionately families of color.⁷ Across her projects, she has linked the maintenance of the family via biomedicine to the profession of social work and to the growing criticism of police violence against Black people. Roberts argues, for example, that police abolition must be accompanied by “abolishing family regulation.” Medicine and public health are key levers of the enforcement of the nuclear family ideal, offering both carrots and sticks to support the maintenance of the family.⁸

To abolish nonmedical institutions, like the police, in which Black people are subjected to physical and mental harms—to be later fixed, often only temporarily and at great cost to individuals and society at large through the tools of biomedicine—requires an examination of what exactly they are designed to defend. The efforts of law enforcement to shore up the institution of some gender-normative (white) families, by safeguarding the holding and transfer of private wealth and property, while preventing undesirable (Black, Latinx, Indigenous, other nonwhite, queer, and disabled) families from accessing such resources suggests just how fundamental a role the nuclear family plays in contemporary US society.

I connect what happens in the private space of the food allergy home to the public stages of advocacy.

A more critical consciousness of the connections between family, health, race, and gender was brewing among food allergy advocates in the exceptionally catastrophic summer of 2020. As I was finishing this book, I came across an essay from a food allergy parent that addressed the problem of how to advance food allergy activism in light of interlocking forms of power and oppression. Published on the Food Equality Initiative website and signed by Emily Brown, the essay reflects on how to hear and include Black children, adults, and families in food allergy activism. Brown published the essay on June 8, 2020, as COVID-19 sank its teeth deeper into US society, and as the country entered its second wave of daily protests against police violence after the killings of Breonna Taylor and George Floyd. Brown writes:

For far too long, white-led patient advocacy organizations have been hyper-focused on alleviating the challenges of the privileged and have failed to listen to the needs and priorities of patients who bear the overwhelming burden of the disease.

 

These failures reinforce health disparities that manifest in limited access to care and treatments, allergen-free foods, and emergency epinephrine.

 

Black children with food allergies are more likely to die from anaphylaxis than white children with food allergies. These Black Lives Matter!

 

Our voices, our families, and our health can no longer be ignored. We must take action.⁹

While still centering children and families, Brown begins to unpack questions of whose families and lives are prioritized by food allergy advocacy as it operates today. After being “ignored” by a primarily white organization when she was in need of assistance, she formed her own organization to focus on Black families and children. In her lived experience, appeals to unmarked children and families in food allergy awareness and advocacy efforts were too often synonymous with families who were white and wealthy.

I would go one step further than Brown to argue that decentering the whiteness she identifies in her post requires dismantling the reproductive politics of the family that informs food allergy advocacy work in this country. I am heartened by her critique of the whiteness of food allergy advocacy because dislodging the nuclear family from health research and politics, and the whiteness that unmarked appeals to family typically encode, must be a coalitional project. The genealogies of feminist, AIDS, and radical disability activism that I have cited in my book offer ways to think the body in opposition to capitalism, heteronormativity, and racism—although they each also offer cautionary tales of how advocacy organizations can be co-opted to support these oppressive structures as well.

However, no one drug, no single standard for disability benefits, no umbrella expectation for a universal model of “good” care will accommodate every person with food allergy, let alone every person managing any other chronic illness or disability. Any such movement must be based on intersectional analysis of how both health and the family operate as social institutions that direct the exercise of interlocking systems of power, like race, gender, wealth, and nationality. As Brown’s analysis suggests, the necessity of these expansive demands holds true in the specific case of food allergy activism as much as it does in other aspects of everyday life and at other scales of analysis.

My book offers one example of how such an analysis might proceed. I take a critical view of health activism informed by feminist and disability justice thinkers. I did not take claims about the intent to do good at face value; rather, I investigated how such claims influenced policy and everyday life through actual awareness and legislative campaigns, pricing decisions, and organizational structures. I ended my writing of the book interested not only in how people involved in health advocacy work manage the everyday challenges of chronic conditions but also what and whom the experiences and platforms of leading activists do not include. Asking who is left out is a crucial gesture of feminist methodology that often exposes uncomfortable truths. With this in the back of my mind, I seek to connect what happens in the private space of the food allergy home to the public stages of advocacy to examine who is left out of the benefits of advocacy if advocates themselves come to their work with a situated experience of the world.

Situating, as Donna Haraway had taught feminist scholars, is a necessary tool for telling fuller truths about the world, but any individual’s situated truth is still only partial. The account I offer in the book is also shaped by the partial perspectives I encountered in my research—that is, by the fact that the participants involved and organizations examined were primarily white and middle class, and all based in the United States.

The version of health activism I document in Food Allergy Activism is also shaped by the fact that the individuals and groups discussed were mostly narrowly focused on how to make potentially life-threatening, everyday struggles a little easier to manage. This “emergency time” frame is a common context for health activism in the United States today, but it does not provide much space for considering how health activism motivated by the experience of a specific condition or illness could be done in a way that prioritizes expansive societal changes over minor tweaks that fail to challenge the status quo.¹⁰ My research participants and the organizations I examined by and large did not ask how to do things otherwise on a grand scale. Rather, most asked what would work if we accept the state of the world as largely unchangeable and focus on these small issues of direct concern to our lives and the lives of people we are directly connected to.

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By David Schleifer

Make no mistake: It is difficult to imagine otherwise, especially in a time of crisis, be it the individual crisis of adapting to life with a deadly disease or the collective crisis of a global pandemic. I write during an urgent moment for health care and families in the United States, and in its wake, the future seems to telescope away, to blend into the vague horizon where we cannot possibly predict what happens next. When we recognize that nothing seems to change despite the best of intentions, it is tempting to feel that we are living in a moment akin to the Dithering in Kim Stanley Robinson’s science fiction novel 2312: a time of inaction in the face of obvious and interlocking environmental and social crises.¹¹ However, in this world, the embodied world, not the world of fiction, we have the resources to imagine—and, certainly, in twenty-first-century United States, to provide—care beyond mothering, concern beyond the immediate family, comfort that does not reify whiteness, medicines available to all, and solidarity among all caretakers.

Health activism roots the pursuit of a better life in embodied experience, providing important clues about how to imagine health, bodies, family, and community otherwise. Yet any single community or campaign offers only a specific, partial, and ultimately incomplete map for what comes next. It is in thinking via lived experience, with history, across communities, and with people who have been so far left out, that robust imaginings of better futures have any hope of becoming lived reality.

Excerpted from Food Allergy Advocacy: Parenting and the Politics of Care by Danya Glabau, published by the University of Minnesota Press. Copyright 2022 by the Regents of the University of Minnesota. Used by permission.