Neither a Hoarder Nor a Prepper
Sometimes I feel like saying check your privilege when people complain about hoarders. For some of us, storing supplies of food is how we manage a disability. This isn’t an easy point to make in conversation because cultural assumptions about food are so bound together with assumptions about choice that those of us who lack choices often get overlooked.
In theory my restrictions ought to be easy to accommodate. A few simple changes to food labeling regulations and to awareness programs could make the lives of people like me a lot closer to everybody else. Yet when Congress passed the food allergen labeling law called FALCPA, it left ten percent of people with life threatening food allergies out in the cold. I’m one of the people who got left behind.
So I not only have a life threatening immune disorder that could send me to the ER while the hospitals are filled with infectious COVID-19 patients, I have an unregulated immune disorder. Any processed food that contains the words “natural colors” or “natural flavors” on the ingredient list might contain something that could send me into anaphylactic shock. I have no legal right to know whether my allergens are present.
People who aren’t familiar with this problem often have trouble wrapping their heads around the dilemma. So stating again to be clear:
Yes, I read the label.
Yes, I read the fine print.
No, the information isn’t there.
Congress created a loophole big enough to drive an ambulance through.
And yes, it’s a disability. It took eighteen years of court battles and not one but two acts of Congress to get this class of diagnosis recognized in the ADA. So although nominally I have rights, they’re mostly dead letter.
That’s a dilemma even in the best of times. I simply can’t take risks now while the stores have bare shelves.
Organizations that ought to know better recommend writing a separate request to each manufacturer to ask whether a specific food is in its “natural flavors” formula. That’s a hassle on all sides even if it worked, which it doesn’t. Companies are under no obligation to disclose these formulas, sometimes they don’t even know what a formula is because it’s contracted out to a third party that doesn’t disclose the details, and even when a consumer does get an answer there’s a catch: the current regulatory climate also allows manufacturers to change formulas at any time without notifying the public. So the lucky query that receives an answer can become obsolete the next day.
For years this condition has meant having to cook most meals from scratch. There are a few processed foods I can eat but have been gradually been losing choices as manufacturers cave in to pressure from food faddists to switch recipes to natural this, natural that. Marketers often lump together people who have my type of immune disorder with the “wellness” movement, a mistake which has grave consequences. Wellness culture is prone to the naturalistic fallacy so they operate at cross purposes to this medical necessity.
The FDA already has the power to solve most of this problem with the stroke of a pen. An adminstrative classification known as GRAS lets them decide which ingredients pose no danger to the public, and all of the foods that could kill me from a trace exposure are GRAS. There isn’t a lack of evidence — case studies are in the medical literature and leading professional associations of qualified medical specialists acknowledge that life threatening anaphylactic immune responses to fruit do happen. The political will to make the change has been lacking. It’s a longstanding problem that got criticized years ago in a reputable trade publication. Yet here we are.
As I wrote last month, my life is an acceptable casualty to the agency whose central mission is ensuring the safety of the United States food supply.
Now I happen to be quite fortunate to have workarounds. Not everyone with anaphylactic Oral Allergy Syndrome or other unregulated life threatening allergies has this luxury: I keep a pantry and a deep freezer. Have done so for years. Those things are stocked to the gills right now. I also raise sprouts, raise microgreens under grow lamps, keep a vegetable garden, and have several safe-for-me fruit trees in the yard. None of this is easy: have been dragging my heels about sterilizing a five gallon bucket to start another crop of oyster mushrooms. Yet comparatively speaking this is good luck because I have the space to do these things; many others with similar diagnoses lack these options.
This isn’t a doomsday prepper dream house or a homestead. It’s just the safest way to make sure my food supply isn’t contaminated. In years past I have suffered immune reactions that nearly needed an ambulance because someone touched raw grapes before also touching the vegetables that I later ate.
Paranoia doesn’t mean extreme fear; it means irrational fear. I’ve been living with a rare immune disorder for decades and we’re in the middle of a pandemic. I know exactly how many diagnosed COVID-19 cases are in the city with the nearest hospital. It’s quite rational to exercise an abundance of caution to avoid needing that hospital right now.
At the same time I am keenly aware how none of these details would need explanation if my immune system reacted to bee stings or to antibiotics or to iodine. Those allergies result from the same biochemical malfunction as food allergies. Yet many who’ve never heard of Immunglobulin E draw an imaginary distinction between them because few people understand the biological basis of allergies.
You’ll get no apologies from me about stocking the house: meat packing plants are shutting down and farmers are destroying food because of supply chain disruptions. The business press is warning that food shortages may be coming soon and last a year or more. Most people can accept substitutions; my immune system doesn’t negotiate.
These are the thoughts that run through my head when people start shaming hoarders. Without something thoughtful to refer them to read it’s been too risky to interject into those conversations because there are too many ways the conversation could go wrong. I’m not out to start a quarrel. This isn’t a one-downsmanship competition either. I hope more people join me in pressuring the FDA to do its job better, because if my allergens were listed by name in the fine print then much of this problem would disappear.
So when you talk about hoarders and selfishness, think twice about the embedded assumptions in that conversation. I’ve given away sourdough starter with instructions to two dozen families since this pandemic began. Have gifted spare seedlings and spare produce to friends and neighbors, working out a safe dropoff system to maintain social distancing. Currently counting down the days until May 24 when the blood bank will let me donate again. Can you say as much?
