The FDA’s Relaxed Food Labeling Guidelines in Response to the Pandemic are Dangerous

Woman in a grocery store holding a basket in one hand and a product in the other hand, reading its label.

The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19.

If I hadn’t been born in the 20th century, I wouldn’t have survived infancy. Yet here we are, after decades of work to be sure people with chronic illnesses are able to keep ourselves safe, in the middle of a pandemic, and our government has essentially declared our safety “non-essential”. We have food allergies, mast cell activation syndrome (MCAS), diabetes, irritable bowel syndrome (IBS), Crohn’s disease, postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS), and many other health conditions and disabilities that require specialized diets to stay alive. I’m in that list, so I’m taking this personally.

The day the U.S. Food and Drug Administration (FDA) announced they would relax labeling laws, I was on the phone struggling to get information about inactive ingredients in a family member’s emergency medication. The pharmacy claimed not to have any information since it’s a generic version, and the company website provided few specifics. After three hours of research, we had a tense family conversation about risk assessment. (If an inactive ingredient caused anaphylaxis, was it safe to go to the emergency room during a pandemic?) Fortunately, that didn’t happen. But the question remains: what about next time? Some of this felt extremely familiar.

Let me take you time-traveling.


Back almost 50 years, pre-allergen labeling laws

At a few weeks old, I have what seem to be multiple allergic reactions after nursing. So my mother tries to find a safe (corn and dairy-free) formula. There are not yet labeling laws for allergens, and since most companies won’t share that information, finding safe formula was difficult. About the time she finds a formula that keeps me alive, someone in the government has it removed from shelves (ironically out of concern about whether an ingredient is healthy). And so my mother has to make many phone calls and drive sometimes for hours to find stores that still have even a case of the formula. Eventually, my parents contact the company that makes it, and the head of the organization agrees to meet my mother secretly at a gas station where she will open her trunk, and he’ll put in the boxes of whatever they have left. Yes, really.

Around 1976

My parents notice that my sister and I are getting sick quite frequently. Ear infections, rashes, blisters, stomach problems, obviously depleted immune systems. One thing almost all chronic illness patients like us have in common is having to be a detective. (Try to imagine doing that before the internet!) My father suspects a supposedly wheat-free bread they’d bought, so he writes a request for information. In a literal circle of denial, the company says they won’t reveal information, the FDA says it is a state issue, and then the state said it is a federal problem. My parents are able to afford a lawyer, and a court date is set. At the pre-trial meeting, the bakery company’s lawyer says my mother might be “making all this up for attention,” and my pediatric immunologist, a tall, kind man with a stutter, slams his fists on the table and suggests that the lawyer shut up. The company tries to explain that “wheat grains may have migrated” through the factory. (Our family joke will forever be the image of tiny little wheat grains with wings.) Finally, the judge suggests my parents prepare for trial by dressing me up in a cute dress with ruffles and a bow in my hair, and has me sit in the front row where the jury could see me. Not coincidentally, the company admits it dusted the pans with wheat flour, and settles two hours later, agreeing to label their products accurately and to pay medical and legal fees.


The Food Allergen Labeling and Consumer Protection Act (FALCPA) is finally enacted two years after it’s signed. Eight major allergens are included: milk, eggs, fish, crustacean shellfish, tree nuts, peanuts, wheat, and soybeans. Around 160 other things that had been identified at that time as causing allergic reactions aren’t on the list. There are also still literally thousands of things counted as “natural flavors” that don’t have to be specifically named. My child is 7 and we’re still figuring out what they’re anaphylactic allergic to, so that’s not comforting.

February 2020

My school district says that to combat Covid-19, they’ll be cleaning the classroom I teach in with special heavy-duty cleaners. When I ask about ingredients and safety they have no idea, but someone sends out a state-wide list in a staff email. The ones they’re planning to use have a note on its website: “pleasantly scented” with “natural ingredients” (no information as to specifics).

March 2020, sheltering-in-place

Since our kid and I both have multiple severe food allergies, my husband and I are making lists of which foods might become scarce if supply chains are broken or slowed down. We make a list of what we’ll need to order from safe online sources; we spend his overtime bonus on extra items to fill a storage pantry. Many of these foods are not available anymore in our area due to the pandemic and some things like unscented hand sanitizers are already sold out online, too. I put myself on at least 6 mailing lists from online retailers, waiting to be told when the products are back in stock. Getting 3-pack of gluten-free yeast feels like a triumph. And if I hadn’t gotten pandemic-uneasy in January and ordered extra pump bottles of safe soap…we’d be out of luck.

My spouse, who is not immunocompromised, can risk going carefully to the store. He FaceTimes me while he’s there, and I go through the now weekly surreal experience of participating in shopping through a phone screen. He returns; leaves his shoes outside the door, carefully places groceries where they will be disinfected, and then takes a shower.

People are appearing on my social media feed asking for help locating safe products they need for literal survival.

“Does anyone know where I can get…?”
“I can’t find this flour anymore and it’s the only brand that doesn’t make me sick”

A web of kindness spreads out over the internet, of people offering to send things to disabled people stuck sheltering at home or in quarantine.

“Hey, I think I found it on this website! Here’s the link…”
“I have supplies left over after having surgery. DM me your address, I’ll send some, no cost.”

June 3, 2020

I am doing research online and trying to figure out these FDA relaxed labeling rules. According to the FDA, companies may substitute ingredients if “the ingredient being substituted for the labeled ingredient does not cause any adverse health effect (including food allergens, gluten, sulfites, or other foods known to cause sensitivities in some people, for example, glutamates)”. It’s supposed to make it easier for companies to continue production, but their list of food allergens that are “official” is limited to 8 (a 9th, sesame, must be labeled in Illinois, but there are still legal negotiations going on at this time for it to be added to the list). Of those 8 on their list, I have dangerous reactions to 6, plus at least 15 more that are not on the list. Oils that have similar use can be substituted without a change of label (with the sole exception of peanut), which sends up a red flag to those who are, for example, allergic to corn or canola. It gives companies the choice to change spice mixes when the label declares the generic term ‘spice.’” These loopholes terrify me. I have a list of products I know for sure are safe, vetted through emails and phone calls. Now I have no way to tell if something might cause an anaphylactoid reaction. I keep looking at our weekly shopping list, wondering how long I have before I have to worry about labels no longer being accurate.

June 18, 2020

There are food industry representatives on my computer screen today, talking with Food Allergy Research and Education (FARE) about the new relaxed labeling laws. I’m taking notes when the host relays a question from a viewer about how consumers will know about changes if labels aren’t required to change, other than a few major allergens. The woman in the little Zoom box jokes: “Well, I’ll just use my crystal ball…” She says she’s not completely sure, and then talks about the ways companies “might” share the information: websites, call centers, stores putting up signs. And all I can think of are the barriers. Are the websites fully accessible? A lot of them have images of food and medication labels that are .jpeg or .png files, not readable by many apps, without alt-text. Do the call centers actually have up-to-date information? How will stores know to put up signs on shelves and who would be held accountable for our safety? Would the signs be accessible? The FDA’s official updated Q&A says “we recommend that manufacturers use alternative ways, such as posting information to their website or through point of sale labeling, to communicate to consumers any changes, such as minor ingredient omissions or substitutions, that are not reflected on the product label.” To me, it sounds like that moment in the film “Pirates of the Caribbean: ”the code is more what you’d call “guidelines” than actual rules.”


So, about that time travel. Back in the late 1800s and early 1900s, the FDA was created in response to, among other things, massive abuse of a lack of labeling. Companies lied about ingredients, taking advantage of vulnerable and marginalized populations (especially women, disabled people, Black communities, and immigrant communities, all of whom had less access to health care). These are also, not coincidentally, many of the same people more at risk in the present for not having health insurance and accessible medical care for chronic illnesses, often living in places with less access to safe foods and medications. The laws in America deliberately keep many disabled people below the poverty line in exchange for help, and those same communities also deal with higher levels of environmental pollution that can cause or exacerbate chronic illnesses. And now we have to question the safety of our food and medication, and it’s exhausting. Many of us already deal with medical and social gaslighting related to our disabilities and it can feel rather like being caught in a time loop. We want to break out of it and move forward in safety, not go back.


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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Two Generations Reflect on Life Before and After the Americans with Disabilities Act

Photo of parent and child Laura and Wren Reeve

The following is a conversation about attitudes, access, and ableism before and after the passage of the Americans with Disabilities Act (ADA) between Laura and Wren Reeve, mother and offspring, aged 48 and 19. Both have multiple chronic illnesses (between the two, they deal with POTS, immune disorder, PTSD, anxiety). Laura is a middle school teacher and Wren is a non-binary, part-time college student and accessibility intern. Both are also musicians.

Wren: So can you share what things were like for you before the ADA?

Laura: Even though there were already laws in place to protect students with disabilities, there was still a lot to contend with. I have severe food allergies, asthma, and immune problems, which no one knew a lot about when I was a kid, so my mother had to advocate for me and for my sister, constantly. For example, she had to keep my classroom environment safe if I was going to go to school, check it for environmental factors that would cause reactions. She had to go on every field trip, I had to have my own lunches packed, I couldn’t share safely with anybody else, and my mom had to know when any class events involving food were happening so I wouldn’t be left out. And if I needed more time on a test or project, my mom had to talk to the teacher. She had to check my classrooms for mold/pollen levels, chemical cleaners, new carpet or paint, create or buy substitute paste that was safe for me to touch for art projects, and all that. 

Wren: Did you get made fun of when you were a kid?

Laura: I remember being ridiculed a couple of times as I got older for needing extra time on tests or homework. Going to college was the first time I had to advocate for myself with a disabled student services office. A new concept. I applied for housing as a disabled student – the first time that word was ever used to describe me, part of my identity. I got help, like you, with note-taking (especially brain fog in the springtime), with test proctors. And we were fighting to get the ADA passed while I was in college, so suddenly it was a huge part of my life. Big celebration the day it was signed! But even after we still had to deal with prejudice and stigma on campus. People being told that someone was uncomfortable living with them because of mental illness, so they’d be forced to switch dorm rooms, or professors who still argued about it “not being fair” when we requested extra time on an assignment. We were educating others about disabilities through information tables and theater, but then having to struggle at the same time. The ADA didn’t change those things quickly. It didn’t necessarily take away any barriers to things we had to deal with on a sometimes daily basis. And people talked more in society about disability but it was still in stereotypes and ableist jokes a lot of the time.

Wren: I wonder if that’s because there’s all this information out there but a lot of it is wrong!  I had disabled representation in my life because of you and my aunt, but I was in a small school full of mostly able-bodied students. So I had a lot of internalized ableism where I kept thinking that I was not disabled enough to use the word disabled. I thought I didn’t need that, when I really, really did. And that was really hard for me growing up. There were situations where I’d want to go on a school field trip and you and Dad would have to figure out if it was safe for me, accessible. Would I have asthma on the trip, or get dizzy, or what are we sending for food, and does one of you have to come on the trip with me? And I didn’t want that because I didn’t want to feel singled out.

Laura: But we wanted you to be able to participate.

Wren: Yeah, and I knew that, but I always thought, do I go on this field trip with one of you or have someone that knows what I need, or have to be the kid not going in the class or force myself to go on this trip without help? Not a good situation. Or maybe not mention the trip to you guys and not go, because in my brain at the time, it wasn’t worth risking what I saw as getting special treatment. If parents start getting involved, since it was a private school, and it was unusual because they usually just paid for tuition, you know? And you went to public schools when you were a kid. It felt like I was getting special attention and it was really uncomfortable. Like, my teacher would announce every year at the school’s Open House, “we have kids with food allergies in the class, so you can’t bring these certain things” and parents wouldn’t realize or understand that allergies in general can be debilitating. They’d bring things anyway and not get it. They’d complain it wasn’t fair to require them not to bring bug repellent that was dangerous for me. Basically, they would complain about the restrictions right in front of everyone including me.

Laura: That’s funny, because I’ve had more issues with adults now, post-ADA. People who like to tell me that I’d be “cured if you just did X, Y, or Z” (usually yoga or eating a lot of something that, well, could kill me). They get really annoyed because they heard something somewhere on TV or online and I’m telling them that I can’t do that thing safely. That I can’t possibly know the disabilities I’ve lived with for almost 50 years, that I can’t possibly be allergic to that thing, not really. And it turns into a thing about them where they’re insulted that I’m saying no. In their eyes, I’m being rude. Do you have the really snarky responses ready to go for that?

Wren: “Like, yoga’s great for you, but my joints will pop out of their sockets so my doctors say nope.”  And they’ll be, like, “you can’t or you won’t?” as though you’re deciding to have disabilities, like it’s a choice. Do you remember the first day I used a cane? My PT guy showed me how to use it correctly and I got on the bus and within probably five minutes, some random stranger asked me if I really needed a cane or if I was just using one ‘cause it’s “trendy.” Ugh. People regularly come up and ask me why I’m using the mobility scooter, too, and why I really need one since I’m so young in their eyes. Because young to a lot of people means able-bodied, and maybe folks aren’t putting the idea of the ADA with youth, just older generations.

Laura: Implying you’re being lazy. I had the thing where, yeah, for me, adults were more ableist than kids. Like when at my old job, the 5th graders went to science camp for a week, and when we were supposed to walk along a cliff’s edge and climb down a really steep hill, I said no because of joint problems and vertigo. And a parent started bullying me, calling me a coward and a quitter, and saying I was setting a bad example for my students. I was setting a boundary and she didn’t like it.

Wren: I had the opposite experience, where when I got to college, it was a culture shock because there were all these accessibility things I had never gotten in school before. I was told those things were just for others, and they said these are for you. But when I was younger, I definitely was told to just push through things, but both kids and teachers as well. “You can do this, stop being lazy.” When I stood up for myself sometimes I got sent to the office. They wouldn’t call you guys, just talk to me and send me to another class for fifteen minutes or something. And I remember wondering why was being punished for something I literally couldn’t do. And that was after the ADA. And then a lot later, I got to use my physical therapy for credits for physical education, although there was a lot of arguing between the school principal and district about how that would work exactly. Getting the POTS diagnosis a couple of years ago was really important because then the previous couple of years of being told I wasn’t trying hard enough – that I was trying to get out of doing things even when I really wanted to be able to do them – my disability was on paper, was valid. Schools need a lot of paperwork to prove you’re actually disabled!

Laura: My mom had to write a note every day in case I needed to get out of physical education because they didn’t believe me unless I had one. That was before the ADA.

Wren: Yikes. Except for the time Grandpa wrote it and they thought you’d forged it because his handwriting was messy. (laughs)

Laura: Yeah. Just, no sense of people trusting me to know my own body. 

Wren: I had people stand up for me sometimes because I couldn’t (literally sometimes). I’d have friends speak up in class and be, like, “They can’t really do that right now.” And the teachers would tell me stand up for myself even if anxiety or exhaustion made it hard, and they didn’t get it. I couldn’t, physically or emotionally right now. And this was again, after the ADA, right? And they didn’t know. They didn’t get it, what they were supposed to do or how to do it, not to isolate a kid or humiliate them because of a disability. That the laws say to give equal access. Didn’t you have to argue to get me extra time on tests? Some teachers still don’t get it, even at community college. I mean, I was stuck out in a hallway with a computer math game when I couldn’t do the math in 3rd grade because of my processing disorder, and that was decades after the law was passed! Access and compliance are two very different things, and I bring that up a lot when I’m doing trainings about inclusion now. Do people feel safe and welcome in the space? Do they have to ask you for things to make it safe or is it already part of the set-up? 

Laura: What kinds of accessibility issues have you run into post-ADA?

Wren: So one of the main things I find is that when I go into buildings in my chair, especially where we live, is that the buildings are old enough that they were pre-ADA design but they’ve been updated enough, supposedly, so that they’re compliant. But what they’ll do is they’ll have one ramp for the entire building, the back corner, like near the dumpsters in the alley. Or in order to get to the main part of the building, you have to go all the way around to find an elevator, um, which is very frustrating.

Laura: And you’ve said that sometimes when you have to be on a panel or in a workshop that you arrive to find out that it’s on the third floor and there’s no elevator.

Wren: Yeah, all the time. An example was the other day, I was working on a project with a friend and they said, let’s work on it upstairs, and I had to take my cane up two flights of stairs…or sometimes if they have an elevator, it’ll be freight elevator for, like…

Laura: Moving cargo and freight?

Wren: Yes, um, so I find it “fascinating” that I’m considered “cargo”?

Laura: Like you said, a lot of places that claim they’re “ADA compliant,” but it’s really the absolute minimum, y’know – schools that are very much insisting that if they have students with physical disabilities, “we’d have a classroom they could use.”  Their idea of ADA compliance is that if someone shows up, they fix it or change it, rather than have everything be compliant in the first place. Most of us with invisible disabilities, asking for accommodations tends to be stuff that other people don’t even think about or know about. So we have had to create our own accommodations – buying a stool to sit on in the classroom, redesigning the setup or tech interfaces. A kid with dyslexia can easily have a specially-designed font installed on their student laptop, but adults at staff meetings or trainings don’t use it on their presentations. 

Wren: Ugh. Yeah, I’ve had to go into classrooms at my college where a teacher has to ask students to move desks around to make room for my mobility scooter. And then during the semester, I use a special pen from the access center that helps record my lectures while I’m writing but some days I can’t write and I have to have someone in the class take notes for me and I’ll have people glare or give a dirty look…like, “I’ve seen you write before, you obviously can do it” and I’ll just raise my hand to show them the tremor and say “I can’t today.” And that’s the thing; sometimes I need to use a certain accommodation and sometimes I don’t. And as a younger person who’s experiencing a workplace environment (and sometimes uses a cane, and sometimes a chair) and people don’t know, they’ll say “You can just do this, right” and I have to explain that no, I physically can’t. And then they see me with a cane or chair and immediately demand to know “what happened.” Same on the bus when I take that to get there. 

Laura: It’s like there’s more awareness now, post-ADA of really obviously physical disabilities but still not a lot about other types. My school district has had multiple speakers at mandatory staff trainings who were really ableist. One guy said that he felt it necessary that every teacher get up early and walk for at least 15 minutes every morning before teaching. Another one snapped at those of us who chose alternative seating, and she wouldn’t allow anyone to type for note-taking, saying that it was “something that students with special needs could do, probably with permission but that we were grown-ups so..” Plus, the readings for the workshop were awful and ableist – all about mentally ill people being violent and dangerous. Not a great day.

Wren: People don’t grow out of accommodations just because they’re older. And like, when we got to a hockey game and there are the sensory kits with noise-canceling headphones and things. They’re for everyone, and they don’t ask. Just there to use if someone needs it, right? 

Laura: When I was a kid, a lot of events would have been inaccessible unless an adult called ahead, made special arrangements or brought our own stuff. A huge, giant deal. So that’s definitely something that’s changed post-ADA that I like. It’s pretty frustrating for me sometimes, seeing the fight you have to have to make sure you have equity and basic respect. I suppose I sort of hoped after we fought so hard to get the ADA passed into law back then that it would make things easier for your generation. 

Wren: My generation needs to both enforce it and refine it, but there’s a lot more to be done.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.