Happy Food Allergy Bloggers Conference weekend! I know, I know, it’s over. I’m in the airport, looking forward to sleeping on my red eye flight back to the east coast. But who had time to sit down and write a long blog post about it while it was going on?? Certainly not me. So: a belated happy Food Allergy Bloggers Conference weekend!
I had a wonderful weekend and met so many awesome bloggers, parents, food allergy advocates, and small business owners. Meeting everyone I did made me really appreciated how many different groups of people – with so many different goals, motivations, and projects – make up the “food allergy community” and contribute to “food allergy culture.” It also reminded me of how difficult it is to talk about “the food allergy community” as a unified group.
This is an ongoing challenge for me as a researcher. When I wrote my last post about my research methods, I found myself writing this lengthy aside:
One clarification before continuing: I will use the phrase “people living with (food) allergies” below to refer to individuals with allergies and parents of allergic children. Some concerns are the same, some are different. I’ve talked to “representatives” of both groups, but I’m describing an aggregation of experiences of both groups below… Plus, many parents of kids with food allergies are certainly living with food allergies on a daily basis. As the project develops, I hope to refine my language in a way that more faithfully reflects the different experiences people have as “patients” and as parents. However, for now, I will use this more inclusive phrase, “people living with (food) allergies,” for convenience.
Social scientists and humanities scholars in many disciplines have struggled with similar questions and found a variety of ways to articulate them.
Gender and race scholars, for example, have grappled with this issue as one of representation: Which member(s) of a group can be considered to represent that group? Who can be a good spokesperson, and what does that mean for the image of the group in popular culture(s) and society? Does treating one person or one kind of life story as representative of a group of people silence other, equally important perspectives?
In anthropology, the question of representation arises again. The way it’s dealt with is often inspired by research on gender and race. In addition, some anthropologists become deeply committed to and involved with the political movements of the people whose cultures they are studying. The question then is not only one of who can represent a demographic or cultural group in the popular imagination. It’s also a technical question of who will represent a group in political proceedings, and how they will (or won’t) try to fully represent the interests of the community they speak for.
Being embedded in foreign communities or unique subcultures also reveals to many anthropologists how disunified a single “culture” can be. Moreover, social identities – not only culture, but social status, gender, age, family lineage, and vocation – can combine in unpredictable ways, undermining “cultural” values in some situations for some people and complementing or reinforcing them in other contexts. The question that follows is then, how do you decide who’s even “in” a group when there’s such rich variety between individuals, let along appoint a representative who can speak fairly for all of its members?
Science and Technology Studies (STS) scholars make things even more complicated. What if non-humans could be considered “representatives” for scientific ideas and techniques? The most famous example in this field is Bruno Latour’s story of how Louis Pasteur began to popularize the existence of microbes in 19th century France: by using anthrax bacilli to “represent” this entire class of organisms, and making them “perform” in scientific demonstrations throughout the country.
So given all of this scholarly precedent (baggage??) and my own growing knowledge of the food allergy world, I’m very sensitive about how I talk about the participants in this world. In particular, about how I group them together and represent shared interests and values. Certainly, food allergic adults and parents of food allergic kids draw on a lot off similar knowledge about the science of food allergies (IgE mediation, for example), best practices for an anaphylactic reaction (use an epinephrine auto-injector), and what brands offer food products that might be safe for them. But for parents, the focus is primarily on keeping a child safe. That means working with schools and summer camps to control allergens or keep them out altogether. That might also mean finding other mothers to commiserate with and trading tips about the best snacks to pack in their kids’ lunchboxes. For adults with food allergies, the bigger issues might be how to navigate menus during business travel, how to muster the strength to advocate for themselves when they are literally sick and tired, and how to find activities that both they and their friends can enjoy to maintain a normal social life.
You could go down the list of other participants toward infinity: doctors balance bureaucratic constraints with the desire to provide the best care for their patients; food manufacturers balance the bottom line with legal liability and social responsibility; advocates balance personal experience with allergies with professional knowledge about best practices for lobbying; and on and on.
So whose interests are similar enough to group together? When is it appropriate to do so? When is it, in fact, important to do so – when, for example, it’s necessary to emphasize how certain core values, beliefs, and pieces of information unite otherwise very different constituencies? These questions are central to the practice of social science. Finding answers to them varies both by the context of the overall world being studied and by the particular situations, conflicts, or triumphs the scientists is trying to explain. But just because I know to expect this set of questions doesn’t make it any easier to trust that I’ve got the answers right – or to know when I may have it wrong and need to further research and revise.
What do you think about this challenge? What similarities or differences do you see between different participants or groups in the food allergy world? Where do you see yourself, and how would you frame your interests and goals in the food allergy world?