It’s a Friday night in pre-coronavirus times. My family and I are sitting down to dinner with friends. As everyone breaks bread together, I quietly pull out a homemade loaf for my son and me. Inevitably, someone notices and asks, “Are you gluten-free?” My gut reaction is, I’m a person, not a pancake mix. My work in accessibility, designing technology for people with disabilities, has sensitized me to the slight of saying that a person is their condition. But I know he does not intend to be hurtful, so I let it go.
“Actually I can eat gluten, but not wheat,” I respond tersely. I’m hoping he will let the conversation drop here. I’d really rather the dinner conversation not revolve around the dozen foods I have to avoid and what unpleasant symptoms they each induce in my mysteriously overreactive body. But most people don’t think twice before asking for details. If I used a wheelchair or carried a white cane, folks would have the sensitivity not to open a conversation with me by asking about my disability. With food restrictions, these norms don’t exist.
I understand why. The lines between food allergy, food sensitivity, food intolerance, medically-necessary diet, fad diet, and preference are blurry. People with the good fortune of being omnivores often fail to take seriously either the constraints or the emotional burden on someone coping with severe food restrictions. The prevalence of voluntary diets obscures the magnitude of the food allergy problem.
According to a recent broad survey, 11% of US adults have at least one food allergy, over half of whom experience severe reactions, and 45% of whom have multiple food allergies. An additional 8% of adults report other (non-allergic) adverse food reactions. Both the incidence and severity of food allergies have been increasing in recent decades. Coping with food allergies involves substantial logistical and social constraints which have a significant negative effect on quality of life.
Yet food allergies and sensitivities are rarely described as disabilities. Perhaps it is because people with food allergies have no symptoms when the allergen is absent. (Although food sensitivities can cause symptoms that last days or weeks.) The reality is, even when someone feels fine physically, every meal and snack requires caution. For someone who has to avoid multiple foods or who experiences severe reactions, taking necessary precautions is time-consuming and stressful. Consequently, these types of food restrictions do meet the definition for disability in the Americans with Disabilities Act: “a physical or mental impairment that substantially limits one or more major life activities.” Significant food restrictions substantially limit the major life activity of eating, so they are a disability.
Food restrictions have attributes of both invisible and visible disability. As with any invisible disability, the burden falls on me to convince others of the legitimacy of my limitations. When I’m at the gym or in a meeting, no one would suspect me of having a disability. At the table, however, it’s very hard not to have my food restrictions outed. With my son, I have no choice but to out him.
My son is one year old, so he will innocently eat anything he finds on the floor. His food allergies are numerous and potentially life-threatening. This means I need to make sure everyone in the room knows to be vigilant in keeping their food out of his reach. Few disabilities have symptoms as acute as anaphylaxis. An anaphylactic reaction can bring an otherwise-healthy person to death’s door in a matter of minutes. My point is not that food allergies are somehow worse than other disabilities, but only that they deserve to be taken seriously. Unfortunately, many people are dismissive.
The best interactions I have about food restrictions occur when the person I am talking to follows two basic principles of disability etiquette: “be sensitive” and “ask, don’t assume.” Allies ask questions in private and take my answers seriously. “Be sensitive” includes understanding that I am not trying to impose and showing willingness to accommodate. “Ask, don’t assume” is essential because the amount of food to trigger a reaction and severity of the reaction vary widely from person to person. Asking also applies to how to handle the social dynamic around food, since each individual has their own preferences.
At another dinner with friends, the well-meaning host called on me to enumerate my food restrictions to the group. The meal was a potluck and my friend’s intention was that, after my recitation, everyone would tell me whether I could eat their dish. Aside from the embarrassment of introducing me by my disability, this strategy had major flaws. First of all, no one can remember the dozen foods I can’t eat and then mentally compare it against the ingredient lists of every processed food they added to their dish. (Do you know what kind of oil is in your salad dressing?) More seriously, deciding whether a dish is safe for someone to eat involves detailed knowledge of ingredients, the severity of their reactions, and their personal risk tolerance. No one should be making this judgment call for someone else. If the host had thought of food restrictions as a disability, perhaps he would have thought to ask me my preferred accommodations in advance.
One silver lining of these times of coronavirus is that no one is expected to eat outside their home. No networking events with unlabeled appetizers. No birthday parties with tantalizing wheat-based cake. No dreaded potlucks. My conscientious husband cooks delicious food that we can all eat and enjoy with confidence. When the pandemic subsides and everyone returns to eating together, I hope that people treat food restrictions with the same seriousness and sensitivity that they would any other disability.
Lisie Lillianfeld designs technology for people with disabilities. linkedin.com/in/lisielilli