As many of my readers probably know, I’m currently doing some focused research interviews to learn more about the process of passing stock epinephrine legislation in the United States. Right now, I’m at the end of a reflective and productive weekend for this part of my research. I’m excited to sit down and write for a few minutes to share with you some of my initial ideas.
In my dissertation, I’m tentatively situating the stock epinephrine efforts within a larger framework borrowed from disability studies. Disability studies scholars argue that diseases or physical or mental differences don’t make a person disabled; insensitive, unsupportive, and discriminatory responses to disease and difference from others in society make a feature of an individual disabling. This shift from understanding disability as an intrinsic aspect of a person or medical condition to thinking about it as a problem with society’s response to the disease or person is a classic example of “social construction” thinking in the social sciences. In short, without society functioning in a way that treats something as a problem, the “problem” wouldn’t exist.
This attitude is embedded in how many people talk about living with food allergies. I see the stock epinephrine movement in particular as acting out, so to speak, this key lesson about disability. Since a cure doesn’t exist for food allergies – since the body of the person with the disease can’t just be “corrected” once and for all – it’s up to the person, their medical providers, and other supporters and community members to manage the condition together each and every day. As those of you familiar with food allergies know, this takes a tremendous amount of education, the development of some specialized cooking and cleaning skills, and knowledge about and comfort with using epinephrine auto-injectors.
In short, keeping someone safe with food allergies today consists largely of adjusting the social environment.
The social environment in public environments like schools, however, is often not finely tuned to the needs of someone with food allergies. What stock epinephrine bills do, in the language of this framework I’m developing, is put legal structures in place to make the social environment more equipped to handle the needs of people with food allergies. Providing epinephrine auto-injectors in public places, training key individuals in their use, and removing liability from those who prescribe and administer them nudge things enough that it becomes conceivable to hold people other than the patient (and their parents) accountable for staying safe with food allergies.
Of course, this isn’t news to anyone involved on the ground. But I don’t think any scholars in my fields have connected the dots between disability, activism, legislation, and medical care in quite this way before. In fact, disability studies frameworks for thinking about bodily dysfunction and how it affects social life are, surprisingly, largely absent from medical anthropology in particular. (The exception is the work of Rayna Rapp and Faye Ginsburg, who work together to study children with disabilities in the US, often drawing on the disability studies framework I outlined above. Rapp’s book Testing Women, Testing the Fetus develops these themes as well.) Scholars often jump straight to proposing a cause for why bodily conditions exist in the first place: economic transformations, historical racial and ethnic inequalities, the ravages of war. The everyday struggles and local victories like passing state-level legislation are, in a way, too ordinary and small for much contemporary anthropological theory to make sense of.
I will admit, this way of thinking about disability is not the most cutting edge theory. It’s been around for a couple decades at this point. Social construction theories are out of favor in my corner of academia (STS and anthropology of medicine) because they often make it difficult to account for historical factors or to build a platform for social change. But it does provide a powerful starting point for understanding how biological difference varies according to social context. In the case of stock epinephrine bills, an appreciation of the power of society to shape the experience one has with a disease has, in fact, turned out to be an invaluable resource for changing social obligations through legislation. The end point is improving life for children (and, increasingly, adult) with food allergies in this country.