A detailed exploration of parents’ fight for a safe environment for their kids, interrogating how race, class, and gender shape health advocacy
The success of food allergy activism in highlighting the dangers of foodborne allergens shows how illness communities can effectively advocate for the needs of their members. In Food Allergy Advocacy, Danya Glabau follows parents and activists as they fight for allergen-free environments, accurate labeling, the fair application of disability law, and access to life-saving medications for food-allergic children in the United States. At the same time, she shows how this activism also reproduces the culturally dominant politics of personhood and responsibility, based on an idealized version of the American family, centered around white, middle-class, and heteronormative motherhood.
By holding up the threat of food allergens to the white nuclear family to galvanize political and scientific action, Glabau shows, the movement excludes many, including Black women and disabled adults, whose families and health have too often been marginalized from public health and social safety net programs. Further, its strategies are founded on the assumption that market-based solutions will address issues of social exclusion and equal access to healthcare.
Sharing the personal experiences of a wide spectrum of people, including parents, support group leaders, physicians, entrepreneurs, and scientists, Food Allergy Advocacy raises important questions about who controls illness activism. Using critical, intersectional feminism to interrogate how race, class, and gender shape activist priorities and platforms, it shows the way to new, justice-focused models of advocacy.
Introduction: The Reproductive Politics of Food Allergy
1. The Moral Life of Epinephrine
2. Who Is to Blame? Navigating the Causes and Cures for Food Allergy
3. The Hygienic Sublime: Making Food Safe for People with Food Allergies
4. Activist Politics: Disability Law, Legislative Advocacy, and Public Motherhood
5. The EpiPen Pricing Scandal and the Future of Food Allergy Advocacy
Conclusion: Activist Futures
Danya Glabau is industry assistant professor and director of science and technology studies at the NYU Tandon School of Engineering.
"Examining the politics of protecting children with food allergies in the United States, Food Allergy Advocacy opens up a conversation between food allergy, whiteness, and disability to untangle contemporary health politics. It importantly brings feminist STS and disability studies to this understudied but widely cared about concern."—Michelle Murphy, author of The Economization of Life
"Food Allergy Advocacy is a fascinating investigation of the complexities underlying our understanding of allergies in the United States. Through a rich ethnography of people’s experiences with allergies and with advocacy for better recognition and treatment, it focuses on the downloading of care and responsibility to manage food allergies onto families. In doing so, Danya Glabau not only illustrates the highly gendered, racialized, and heteronormative assumptions that configure allergy science and treatment, she also argues that allergy advocacy itself ends up reinforcing this problematic reproductive politics rather than challenging it. An essential read for anyone interested in the intersection of healthcare, patient advocacy, and technoscience."—Kean Birch, co-editor of Assetization: Turning Things into Assets in Technoscientific Capitalism
"This is an exploration into the realities of food allergy care like no other. A great read for all who work, or plan to work, with allergy patients and their families and who want a deeper understanding of the major issues of care and advocacy for such patients’ improved support."—CHOICE