Our topic last week really hit home; disability and identity. As some of you might know, I recently developed a severe tree-nut allergy. An allergy is an auto-immune disorder where the immune system is over-reactive and sensitive. My immune system misinterprets the proteins in nuts as a foreign toxin trying to attack my body. The response floods my body with histamines and T-cells that create such a sever reaction that my blood pressure drops quickly, my throat tightens and I risk passing out and having a heart attack. Exposure is cumulative, and each consecutive reaction is more severe than the last. I am required to carry an Epi-Pen and Benadryl on me at all times lest I am exposed. The goal is to minimize risk in my life as much as possible, so I avoid eating a whole variety of processed foods, deserts, cuisine typical of nuts, restaurants with nuts on the menu, etc.
I’ve never really thought of my allergy as a disability though, nor do I really feel comfortable with describing the situation as such. But according to the Allergy and Asthma foundation of America, it is one of the most pervasive disabilities and disorders, affecting 1 in 5 Americans at roughly 60 million – more than cancer, heart disease and diabetes combined. The amount of people developing food allergies has grown 15-20% in the last 25 years in the U.S., the U.K. and Australia, which are the countries with the highest food related allergies. It is true I can't enjoy many of the things I used to and am restricted in ‘normal’ habits, but I generally felt the term 'disabled' should be reserved for people who had a major debilitating illness or a physical or mental handicap that kept them from functioning as a 'normal' member of society. Part of the reluctance in identifying myself as disabled, I think on a deeper level though, is that I never liked the idea that I might be 'defective'.
When I first developed my allergy it was a major shock, and I used to tell everyone about it. I’ve gotten to the point that I don’t really like talking about it though. There’s many reasons for this fatigue, but I’ve realized part of it is because its awkward reacting to some of the pity responses. Pity was the word that stuck out to me during our discussion. I certainly understand that it is a normal empathetic reaction, and no one means it in an offensive manner. Overall, I am deeply grateful for the concern and compassion people give. But it does get exhausting having to explain Food Allergy 101 to people. It’s also just really scary and disconcerting that most people have almost 0 knowledge about these common disorders and conditions.
I have had some bad interactions with people regarding my allergy, especially at restaurants. For some reason in the U.S. and most of the world, people who handle food are not required to have any basic knowledge in food allergies, sensitivities and the mechanics of cross-contamination and risk. It’s only been recently that food labels started posting “May contain ____” or “Processed on the same equipment that handles ___” and this is still not an official mandate by the FDA. It’s primarily done by food producers as a customary measure and to reduce liability. Since restaurants aren’t required to post their ingredients, this makes for a difficult situation. Red Lobster and Olive Garden are the only ones I know that have an actual “allergy” menu and tell you what each dish actually contains. Pizza Hut and Dunkin Donuts are good examples of businesses that are not transparent about their contamination issues and have compromised the safety of many of their consumers.
Many times I’ve asked servers to check with the kitchen staff if their (insert high risk product here) is made in a facility with nuts. Most of the time this request is met with fear, as they realize they know nothing about it and don't want to end up 'poisoning' me. The more defensive individuals will proudly declare “there are no nuts in it." That’s the surest way to reveal that they have no clue how allergies work and what cross-contamination is, and that I should probably steer clear of most everything on the menu.
I can't tell you how dependent I am that other people understand food allergies and anaphylaxis; friends, family, co-workers, food servers, chefs, etc. Seeing what a high demographic suffer from this disorder and the high risk of death associated with exposer, why isn’t there a better job in our society educating students about this in health classes, and also holding the food industry to a higher standard? Right now the only way to inform is one-on-one interactions and hoping people take the initiative to research and educate themselves, but I have few expectations here granted I don't even think anyone in my family has ever taken the time to google it or read up and depend on me to tell them everything.
Overall, why
aren't we educating our society better about illnesses, disorders and
disabilities as a whole? As we discussed and saw in the presentation, there are
elements of shame and embarrassment from the disabled community that would
greatly be helped with better education, appreciation and awareness by the
general public.
http://www.aafa.org/display.cfm?id=9&sub=30