Food allergies are not a joke [PODCAST]

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“I was truly gutted when watching the recent Saturday Night Live that joked about nut allergies. My son Joshua, who is 16 years old, has an anaphylactic peanut allergy. I found the segment to be insensitive to the millions of people globally who live each day with food allergies, an invisible but potentially fatal disease.

How do I explain to my son that it is OK to make fun of a kid’s throat closing from a nut and then laugh as he struggles to speak? Would this skit make it past the drafting board and be approved if the disease in question was visible? There is a societal disconnect where making light of food allergies (a legitimate medical condition) has become acceptable and that can put those with a food allergy in harm’s way.”

Lianne Mandelbaum is founder, the No Nut Traveler, and can be reached on Twitter @nonuttraveler.

She shares her story and discusses her KevinMD article, “Food allergies are a growing public health concern, not a joke.”

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Transcript

Kevin Pho: Welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/podcast. Today on the show, we welcome back Lianne Mandelbaum. She is the founder of the No Nut Traveler. We’re going to talk about her KevinMD article titled “Food allergies are a growing public health concern, not a joke.” Lianne, welcome back to the show.

Lianne Mandelbaum: Thank you so much for having me again. Pleasure to be here.

Kevin Pho: So for those who are interested in hearing Lianne’s story, just go to KevinMD.com/podcast, go to the search bar in the upper right-hand corner, search for her name, and hear her story. But I want to go straight into this article. So tell me the background of it and what this article is about.

Lianne Mandelbaum: This article is about jokes and food allergies, which I’ve written about in the past, and this one really struck me. It was a Saturday Night Live skit about an incompetent father. It was a home repair episode, and clearly the episode was to make fun of the dad being incompetent. However, at some point, the mom points out that this father has crushed peanuts into his son’s lunch on purpose, to prove that he’s not allergic, and the audience thinks it’s hysterical. And then the kid comes out, and his tongue is swollen so he couldn’t speak, and again, the audience just thinks this is hilarious. And in fact, the dad even adds after that, “I’m not even convinced he’s truly allergic.” And it really struck me. It’s a mainstream television show.

And yes, I’m always on the alert for jokes being made, and it’s not because I’m anti-free speech or I think that people should be shut down. It’s just that comedians, yes, they push social boundaries, and they want us to look inside of ourselves and use the offensive discourse to start talking about important issues, and I think that happens a lot. But it never happens with food allergies, never ever. What happens is a normalization of the abuse. It makes people think that these jokes are OK, and they infuse into the public consciousness, and it shows up in situations like planes, where I collect testimonials, where you have passengers facing these situations where they’re being made fun of by the crew, or being made fun of by other passengers, or laughing at the announcement.

And in fact, there’s one comedian who talks about rubbing peanut oil all over himself, which would be invisible, and then he’s going to sit on a plane and see who he can kill, and the audience thinks it’s hilarious. And so I actually went on Twitter this morning, and I typed this comedian’s name in, and sure enough, OK, here’s one: “On a flight from prey. We stopped all nuts due to someone with a nut allergy. Laughing out loud, hysterical.” And then there’s one where a mom is talking about how the school nurse will not let her child carry his EpiPen. He was introduced to his allergen at lunch, and the school panicked that they couldn’t find it, and he had anaphylaxis. And someone retweeted it and on top said, “Isn’t this hysterical?” Makes me think about that particular comedian.

So these situations do lead to in-real-life bullying, and I think that we have to speak up, which is what my article was about. It was originally an outpouring of my assertions towards NBC and Saturday Night Live, but of course, I have not gotten a response.

Kevin Pho: So when you were watching this skit from Saturday Night Live, tell me the thoughts going through your mind.

Lianne Mandelbaum: The thought that went through my mind is that’s what my son looked like when he had his first reaction. He took a small bite of my peanut butter sandwich. It actually didn’t even, I think, go down his throat, but his lip, like what they were saying, swelled up 10 times its size, and then he was having problems breathing, and then he was clutching his throat just like this person was. And it wasn’t funny. It’s not something to laugh at in real life, or even to joke about, someone having their breath taken away or their blood pressure dropped dangerously low. That’s not humor.

And I was thinking to myself, would this really have made it past the drafting board if it was a visible condition? And somehow I think it wouldn’t. Yes, there are comedians on cable networks that definitely push the envelope, and maybe it would have made it past those drafting boards, but this is NBC, and I don’t think it would. I hope it wouldn’t have. But I think that people don’t understand, and what physicians and advocacy groups often don’t understand, is that people often don’t believe this is a real condition. And so they think if we speak up, “Oh, we’re just going to get more jokes piled upon us,” or we’ll just get looked at as if we’re trying to police speech. But we’re not. We face these disconcerting situations daily, and the jokes have consequences.

Kevin Pho: So when you say that a lot of people don’t believe that food allergies are a real condition, tell us why you think that.

Lianne Mandelbaum: Early on in my advocacy, I went to a breakfast for a particular airline that was touting that they were becoming allergen-friendly, and one of the executives came up to talk to me. He spoke three languages and had four advanced degrees, and he’s like, “Lianne, I want to help you with food allergies and flying, because I understand allergies, because I have hay fever.” And he wasn’t joking. He was being earnest. And there’s just a lack of education, where people equate the word allergy with a runny nose. No, it needs to be equated with anaphylaxis, potentially, and the potential to stop breathing. So I think that by writing these articles and speaking out to the medical community and to the greater community, we can educate people that this is not a runny nose. This is not something to be laughed at when someone asks you to take a precaution. This is something that can lead to death, and it’s not OK.

We’ve also got kids that are embarrassed to tell a flight crew member, because they don’t want to be laughed at. So then maybe they’ll be inadvertently exposed to their allergen one day, and no one will know to use that auto-injector, because they haven’t informed them of the allergy. And I have testimonials of such, where families have been kicked off a plane for disclosing, so they fly the next day and they don’t disclose. And you’re teaching your child that it’s OK to be embarrassed and hide your allergy.

And I understand that you need to get somewhere and you don’t want an airline. I’ve been there. I’ve been there where I had to back down, where they were going to throw us off because I just disclosed an allergy. And you can only push so much before you’re going to get kicked off a plane, whether you’re in the right or not. So I understand that. But I want the people who treat us, the people who advocate for us, and the people at large to understand that these situations are happening and they’re not OK, and one day there might be a preventable tragedy that’s not prevented.

Kevin Pho: So you’ve been writing that a lot of comedians and shows, they’ve been making fun of the food allergy population, and they’ve been doing this for a long time now. Why do you think that they continue to do this?

Lianne Mandelbaum: I think it’s because we don’t have a consensus among the advocacy groups that represent us, the physicians that treat us, and even within the food allergy population themselves that this is not OK. And if you don’t get consensus from all these people, then you have free license, right? I am one mom. Yes, I write. Yes, I have a profile. Yes, I’ve made some changes within the airline industry. But NBC is not going to bow to me. We need a community effort here. We need the medical community that treats us to say, “This is offensive. Our patients face bullying.” There are statistics behind that. That’s not just me saying that.

Kevin Pho: Tell me those statistics. What are those statistics that equate the normalization of this with bullying?

Lianne Mandelbaum: There was a study that suggested that one in five kids are bullied, and not only that, 17 percent of parents of children with food allergies are bullied. And I’ve come across that myself, where I’ve met disbelief for Josh’s allergy. People think you’re a helicopter parent. People don’t invite you places. There’s all sorts of things. There’s sporting events. There are all sorts of disconcerting situations that do happen.

And a lot of the time, the bullying that happens to children is actually with the food. There was a child in the United Kingdom that was bullied with a cheese sandwich, and he died. There was a teacher in the United States, I’ve written about her in a previous article, that had bananas smeared on her doorknob, and she went into anaphylaxis, and the kids thought it was hysterical. That’s not funny. She was transported to the hospital in an ambulance. She stopped breathing because banana was purposely put on the door. There are in-real-life consequences to these jokes.

And the same thing goes for these tweets that go on, like when you’re making fun of someone not being able to reach their EpiPen, and then you’re relating it back to the comedian, and then you’re laughing about flights. You’re not paying attention to the announcement if someone is saying, “Please be careful,” and you’re laughing, which one tweeter said, like, “The announcement just came on, and instead of listening, the rest of us were laughing and thinking about it,” like, that’s the consequences.

You don’t see anyone laughing when someone uses a ramp to get up on a plane in a wheelchair, because it’s accepted. It’s a disability, and you need to get on a plane like everybody else, and that’s the way it should be. And for people with allergies, it’s also considered a disability, both under the Americans with Disabilities Act and under the Air Carrier Access Act. Therefore, we should be able to fly safely as well, and to be able to take reasonable precautions, and we cannot be made fun of.

So it’ll be interesting to see, because Pete Buttigieg with the DOT, they released a new passenger bill of rights recently, and one of the things was to be courteous and not be rude to someone based on their condition. It’ll be really interesting to see if this ends up affecting food allergies, because I hear situation after situation where rudeness is encountered. And it’s not even just on the plane. It’s like when you go to pre-board, which is your right as a passenger, to make your area clean. Because you look normal, and that’s the whole problem, right? You look normal unless you’ve encountered your allergen. And so they see you pre-boarding, and they think you’re getting away with something. And I’ve had passengers followed onto the plane and berated by other passengers.

Or, I’m going to pretend I haven’t. Listen, when I don’t fly with my son and I’m seated in the last boarding group and I get on, I am thrilled. It is no fun to get on in that first boarding group, and they don’t give you that much extra time. You’ve got to get, you know how many peanuts I’ve picked up, like, right around the seat? It’s necessary. We don’t do it because we want to get one up. We do it so we’re not exposed to our allergen. And then we sit and we hope everyone around us is going to be just as courteous and not eat the food, because airlines are inconsistent in having policies and enforcing them. So it’s really a crapshoot.

So at least let us take the precautions that under the Air Carrier Access Act we’re allowed to, and don’t make fun of us or berate us. And it’s not just the people online. It’s often the gate agent, like, “Why do you need to get on this? What was the big deal of the food allergy?” And so people like that Saturday Night Live comedian, making fun of it, they normalize this abuse, because it’s just seen as funny.

Kevin Pho: So when you brought attention to this Saturday Night Live skit, what were some of the responses you received from the folks at large?

Lianne Mandelbaum: Nothing, as far as going up against NBC. Of course, there are people who tell me that natural selection is supposed to get my son off this planet, and they’re tweeting and linking these comedians as well. I picked up a tweet just this morning like that. A lot of physicians that treat food allergy patients did share the article, and I think that’s why your platform is so important, because you have the audience that is in a position to do that. But I have not received anything from NBC. I don’t anticipate it. I am disappointed but not surprised.

And I think that we just keep writing these articles and having these conversations, and slowly we’ll change one attitude at a time by educating people on the real dangers. We’ve got to educate the people in the general population that this is not a runny nose, and we’ve got to educate the physicians that treat us that these are the situations we’re encountering because of these jokes. So it’s not really the best plan to just ignore them and say that they’re OK and just move on because there are other, bigger things. There is a price to be paid for the silence, I think.

Kevin Pho: We’re talking about Lianne Mandelbaum. She is the founder of the No Nut Traveler, and we’re talking about her KevinMD article, “Food allergies are a growing public health concern, not a joke.” Lianne, what are some of your take-home messages that you want to leave with the KevinMD audience?

Lianne Mandelbaum: If you hear somebody making a joke, it might be a great opportunity to not silence them but to explain to them what a food allergy is and some of the serious consequences that could happen from one, because perhaps they’ll think twice about making that joke again. If you have the opportunity to write the comedian or the television show about the situation, I think that the more the companies realize they’re not getting the laughs, perhaps they’ll put food allergies on TV where they belong, in a drama series perhaps. And also, when it comes time for food allergy awareness, or holidays where food is central to celebrating, maybe they will do an educational piece.

So speak up at your school. Speak up to your patients that this is not OK, and talk about it. Try to support them if that’s something that they’re bringing up. Talk about bullying. Just be aware. And I think, again, we have to have these conversations. They’re not easy conversations. They’re difficult conversations. And oftentimes, when you take a joke and you say it’s not OK, you have to be prepared that people are going to come at you and say that you’re anti-free speech or you don’t have a sense of humor. And no, you’re right, I don’t have a sense of humor, because I saw the light go out in my son’s eyes before that EpiPen was administered. And it’s a scary thing when you see it fade. Your child’s eye has a sparkle, and the sparkle just disappears. And I’ll tell you, there’s nothing like it. You never forget it. It imprints on your heart, and you never want to live that situation again.

And not only that, your mind plays back the situation, and you think about the outcome that could have happened if he didn’t get quick administration. And so the EpiPens, auto-injectors, they’re not required to be carried in places like airlines. So you know what? You ignore that announcement, you make fun of it, and you hurt somebody, there might not be the right treatment there for them, and that could be a really scary situation. We have the tools to prevent a tragedy in front of us. We don’t use them, and we need to speak up and advocate for change.

Kevin Pho: Lianne, thank you so much for sharing your story, time, and insight, and thanks again for being on the show.

Lianne Mandelbaum: Thank you. Thank you so much for having me.

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