A Journalist, 9/11 & MCS: Justine Barron

Episode 53 of The Chemical Sensitivity Podcast is available now!
https://www.chemicalsensitivitypodcast.org/

It's called: “A Journalist, 9/11, & MCS.”

You'll hear Justine Barron, an investigative journalist and writer based in Miami Florida. Justine is the author of the 2023 book, “They Killed Freddie Gray: The Anatomy of a Police Brutality Cover-Up." 

Justine talks about:

·      Her experiences witnessing the attacks of September 11th, 2001 in New York City, and how living and working in the city contributed to her health challenges. 

·      How MCS has impacted her daily life and career.

·      Her challenges with housing.

·      Ableism and accessibility in journalism, and more.

 Thank you for listening!

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Justine Barron

 
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Transcript

Aaron Goodman: Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and creator of the show. I'm a longtime journalist, documentary maker, university instructor, and communication studies researcher. And I've lived with Multiple Chemical Sensitivity or MCS for years. MCS is also known as chemical intolerance and toxicant-induced loss of tolerance or TILT.

[00:00:28] The illness affects millions around the world. And the number of people with MCS is rising just about everywhere. Living with MCS means dealing with a range of overlapping symptoms, including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, rashes, and more.

[00:00:50] Trace amounts of chemicals and synthetic fragrances in household and personal care products, paint, construction materials, along with pesticides, cigarette smoke, carpets, plants, and more can spark a cascade of debilitating symptoms. Dismissed by healthcare providers, employers, and even loved ones, many feel misunderstood, isolated, and invisible.

[00:01:18] This podcast aims to change that. We delve into the latest research and speak with all kinds of people impacted by MCS. You'll gain important knowledge, a sense of validation and learn about navigating the realities of MCS. We also explore wider issues connected to toxic chemical pollution and how individuals and communities are pushing back against it and the harms it causes.

[00:01:46] In this episode, I'm speaking with Justine Barron. Justine is an investigative journalist and writer based in Miami, Florida, and has lived with MCS for a long time. She's the author of the 2023 book, "They killed Freddie Gray: The Anatomy of a Police Brutality Cover Up." The book is the result of an investigation that Justine conducted with Amelia McDonell-Parry and explores new evidence obtained over the years about the 2015 death, later ruled a homicide, of 25-year-old African-American Freddie Gray. 

You'll hear Justine explore her experiences witnessing the attacks of September 11th, 2001 in New York City, and how living and working in the city contributed to her health challenges. She talks about how MCS impacts her daily life, career and her challenges with housing, ableism and accessibility in journalism and more.

It was wonderful speaking with Justine and I'm excited to share our conversation with you.

Aaron Goodman: Hello Justine. Thanks for joining me. Would you like to talk a little bit more about who you are and why you agreed to talk on the podcast?

[00:03:07] Justine B.: Sure. Yeah. I am a writer, a journalist. I have had MCS for, I've had it my whole life, but in terms of like crippling and debilitating and life defining, about 13 years.

[00:03:22] Aaron Goodman: So you mentioned 13 years. What was going on 13 years ago?

[00:03:28] Justine B.: Honestly, it was, seemed like it was the best time of my life. I was living in Los Angeles. I had recovered from some prior health things and was my healthiest, even though chronic illness was always part of my life, I was doing well and then all of a sudden one day I just started having migraines like every day and it became clear that the place I was living was aggravating it and that kicked off 12 years of just like seeing if I could ever find a place to live and figuring out what I need in a home and in an environment. And I'm still on that journey.

[00:04:08] Aaron Goodman: You're still on that journey and you're joining me today from Miami. How is your living situation in Miami?

[00:04:18] Justine B.: My parents have this house in Miami. And it's always been my landing spot. But the problem is that my mother was a heavy smoker. And it was a major trigger for migraine and seizure and nausea. And just to the point where it would get so bad every time I stayed here.

[00:04:35] I've been hospitalized and she passed away in 2017 and every time I came back, it seemed like I can't make this house work, even though it felt like my only home in the world. And I tried over the year to find housing. I signed a lease. I had to get out of that lease, my usual stuff because of mold at that place.

[00:04:54] It was really bad. And I decided to put as much effort as I could into seeing if I could make this house work with my dad. First of all, I love him. I love being with him. He needs help. And also, there are a number of things on this house that pass the checklist. There isn't a mold problem. There's no pesticide spraying.

[00:05:13] My neighbors, I can't smell them. Like, a lot of things that affect me in other houses. I'm okay here. It was just this smoke that we couldn't get rid of. I started to clean one of the rooms upstairs. I spent money to get new ducts and clean the air conditioning. And it still won't go away, the smoke. But I have now made this a place that I can live most of the year. It's progress.

[00:05:39] Aaron Goodman: Can we go back to 9/11, September 11, 2001? Because you write about it, would you like to talk about it?

[00:05:49] Justine B.: Sure. When I told you that the MCS like really took over my life about 13, 12, 13 years ago, that was before that, but I now know that it's an underlying cause.

[00:05:58] Aaron Goodman: So when you say before that, 9/11 was before 13 years ago?

[00:06:03] Justine B.: That's 20, yeah, it's over 20 years ago, yeah.

[00:06:05] Aaron Goodman: Yeah, so would you say, do you want to talk a little bit about, You were there on 9/11. Right. And you write about it. And do you want to talk a little bit about your experience of that day and going back to work and what kind of impacts that had for you?

[00:06:21] Justine B.: Sure. Okay. I will say just to like background, there is a preexisting condition. I grew up with severe asthma, allergic to everything. And just like a classic allergy panel, positive to everything, almost not all the foods, but everything in the air, pollen, mold, dander, all of it. So I had gotten past some of it when I left my childhood home.

[00:06:43] Obviously my mother's smoking didn't help. And by the time of 9/11, I was in my twenties and I was having my first career in New York City as a grant writer downtown, a few blocks in the World Trade Center. Now I will say, even just moving to New York, I noticed my allergies were worse. And I was like, I don't think this is going to work long term.

[00:07:01] But I wasn't medicating, I didn't think it was ruling my life. And the Twin Towers fell, I was like, coming out of the subway when I saw one of them collapse. It was crazy that day. But I worked for a nonprofit that did victim service. So, uh, they were helping with 9/11 recovery. And by September of that year, it was 2002, I had a rash from my head to my toe.

[00:07:26] Every single crevice of my body was on fire. I was on like seven courses of steroids. My doctor was like, you should probably leave New York City. So I did. After that I moved to Miami and I found immediately safe housing and I was, I started thriving again. My health. I started to put the pieces together.

[00:07:47] It took a really long time of having those daily migraines to heal. To learn about mast cell activation disorder, those things. I had to do that research on my own. My doctors weren't helping me. I had migraine every day. I went on disability. Um, so this is in the 2010s. And then I started to think, I think this all came from 9/11.

[00:08:08] And it was just my guess. And then a couple of years ago, I'm in a health study, like a 20 year health study of all the 9/11 affected people. They sent me an email saying, Hey, do you have multiple chemical sensitivities? And they were doing a sub study and I was like, I knew it. I knew it came from 9/11. I knew that because I, because what I had learned about multiple chemical sensitivities in researching my own migraine condition was that there's often a toxic exposure and nothing else quite added up.

[00:08:38] Aaron Goodman: Something that we want to do in this podcast is look at 9/11 as an event, as a terrible time when a lot of people developed multiple chemical sensitivity. And that's been documented, as you note, in studies and research. Do you meet people who say, yes, I developed chemical sensitivity after 9/11? Or how much do you know about this?

[00:08:57] Justine B.: So all I know is that there's hundreds of thousands in the study. Which is probably a fraction of how many were affected, but they mostly focus on asthma and stuff. They just added chemical sensitivity, but I know now that if they created a whole sub study about it, it had to be significant. It has to be thousands.

[00:09:16] And the other thing is that over the years, when I would give doctors my medical history, I noticed that if I just said multiple chemical sensitivity, they were skeptical. If I said 9/11, I was good. They believed me. They must have encountered people over the years that were also affected by 9/11 is what I'm saying.

[00:09:41] Aaron Goodman: And since you mentioned healthcare workers, what kind of responses were healthcare workers giving you at the time?

[00:09:48] Justine B.: So, another thing about me is because I know how doctors are, I don't just say, hey, I have multiple chemical sensitivity. Because I don't think a lot of them know what that is, and they might think I'm, I have psychological problems.

[00:10:04] So, I usually say I have these chemical sensitivities. I have to move a lot because I can't be around pesticides. I develop migraines and seizures, and I was exposed to 9/11. So when I present that package instead of multiple chemical sensitivity, my doctors still don't know what to do, but at least they're not immediately psychologizing me.

[00:10:28] Aaron Goodman: I hear you. So if you put 9/11 in the same sentence, you find they take you a lot more seriously.

[00:10:34] Justine B.: 9/11 helps. Also just migraine and seizure helps. Like, a lot of times I'll do this. I'll say, I have chronic migraine and seizure disorder. And they're like, oh. Could it be hormone? I'll say, no, it's caused by chemicals.

[00:10:48] And a lot of times I'll see a look on their face like they want to doubt me, but they can't because I'm just laying out the facts. I have this serious condition, a migraine seizure disorder, which you acknowledge. And I have a cause that I'm telling you, which you don't really think could be the cause, but what are you going to do, deny me? So I usually lay these things out in certain ways to enhance my credibility. It's really annoying that I have to play these games, but...

[00:11:14] Aaron Goodman: Yeah. And how about family and friends? When you developed multiple chemical sensitivity, what kind of reactions did they have?

[00:11:24] Justine B.: Mixed. My mother had cluster headaches. And they witnessed the pain in me. My parents didn't doubt me and they tried to accommodate me as much as they could. My parents, I have another family member who thinks I make up all of it. All of it. He thinks it's all made up for attention. Like what? It's weird. And then I would say with friends, I, so I was married in the midst of the worst crisis.

[00:11:52] I don't know why this guy wanted to marry me when I was in daily crisis, but, um, he was understanding until he wasn't. Like he just reached a point where it's like, we have to move again. I'm not getting better. Why aren't you better? Like that frustration that able bodied people have where they're like, you should have been able to fix this.

[00:12:14] And the rest of my friendships, I just let go because with all, even with long COVID, which I also have and is separate, but I don't know, I try not to be friends with able bodied people anymore because they don't understand and they, when this, when the migraines first hit, I was so social. I had these six or seven friends that I went out with every single week.

[00:12:39] And I was now at home in severe pain and they didn't say or do the right things. They didn't know what was happening to me. I couldn't show up in the same way. They, there were a lot of, have you tried fasting or this or that? Like the assumption that all bodies are the same and that we would all fix the same way. So I have not been able to like sustain friendships in the way that I would have liked, but I have grown a network of online disabled people that I communicate with who understand.

[00:13:09] Aaron Goodman: Yeah, I'm really glad you mentioned the online connections that you have. Would you like to talk a little bit about more about how you find that and what does it bring you?

[00:13:19] Justine B.: Of all of the different Facebook health communities that I'm a member of, like I really value the MCS groups. Yeah. Because I think that our disease is just so unique, and I think we understand each other really well. I think that we are all in such non stop desperation that there is a goodness towards each other.

[00:13:46] A lot of what I'm doing online is just advice. And like, I learned so much more from patients than doctors. It's patients who were like, Hey, you should get tested for mast cell activation. I brought it to my doctors and asked for that test. Same with Ehlers-Danlos, like, learning POTS, like, I didn't know about these things.

[00:14:08] And I go to doctors year round, all the time, and I had never heard of POTS, a very common postural orthostatic tachycardia syndrome, a very common thing that can cause dizziness and migraines and can be triggered by chemical sensitivity, like, not unusual, been around forever, easily diagnosed. And it's patients that teach me all of this.

[00:14:35] And, and especially with the housing stuff, which machine should I buy? Which paint can I use? All that, all the time. Is there an air purifier that's going to help me? Usually the answer is no, I have to leave the environment. But people are, people have learned a lot and I can share a lot too. I feel like with MCS, if you're not in a good environment, it's brutal. And you can't always find a good environment, because most of them aren't, and it's just a really tough disease. Yeah.

[00:15:09] Aaron Goodman: It's interesting to hear you call it a disease, because it is, but I've had this disease for a long time, and I've been deeply involved in this podcast for a long time, and still, when I hear people call it a disease, there's something about it that's, I don't know, confronting.

[00:15:25] Wow, I have a disease. I want to ask you about your work in journalism and have you found there to be a lot of ableism in journalism?

[00:15:33] Justine B.: That's a really good question. Honestly, yes. Ableism shows up in a lot of ways. One way is that if we present our topics, they aren't the mainstream topics. And so people don't want to, editors don't want to publish.

[00:15:50] I'm mostly a criminal justice reporter, but my Twitter presence is highly focused on disability. And so I have an audience that's about disability and I also blog about it and have written about it. With the pandemic, I had a couple of editors saying, we would like to hear more of your disability content, but they didn't want anything I actually pitched because what I was pitching was, Hey, this COVID thing is really dangerous.

[00:16:16] And the government is lying to us, and those weren't the things they wanted to hear, because that's not how editors were living. They were moving on with their lives. So that is one way ableism shows up. Another way is hard for me to separate from the sexism, but there is a way in which as a freelance woman, disabled journalist, I get marginalized and my work isn't taken seriously.

[00:16:43] Even though I, in one city, I broke big stories in Baltimore. Like I think how it's ableism and not sexism. I'm not sure, but I know that I'm marginalized, excluded. And part of that might just be, when you're in a marginalized group, because you're trying to survive, you are speaking about your marginalization in public forums. And that gives the impression to the journalistic world, that you have bias. They see you as like a fringe activist, as opposed to a serious journalist.

[00:17:21] Aaron Goodman: It's interesting because I think the whole understanding of objectivity, I think it's a good thing that it's changing, right? Because you used to be told we have to be neutral and 50-50, etc. But now, but I, it's changing, so I think people like you who draw on lived experience, um, is really valued. But I think some of the old guard hasn't quite got the memo yet. Do you see it like that?

[00:17:43] Justine B.: Yeah. And, but I would also say, okay, yes, but in terms of old guard, I would say it's a lot of young white men too, who want to replace the old guard and hold onto that.

[00:17:52] And not just men and not just white, but mostly, especially it feels like crime reporting or political reporting. And so it's, they're not old, but in some ways they're worse because they work in a way where they create relationships with powerful people. And that's how they get their content. And in order to have those relationships and sustain them, they have to seem square and objective, which really means bias towards the powerful. And so they really hold on to gatekeeping their position. And I think that the threat that journalists like me pose is not about having bias or being a different group. I think that we present alternate facts from the established narrative and they use the fact that we are outspoken, marginalized identities.

[00:18:55] Aaron Goodman: It sounds like there may be a lack of empathy or if empathy is the ability to understand not everyone has the same abilities that I do. Is that something you find like people just don't get it and they think just because they operate a certain way that you should be able to as well?

[00:19:13] Justine B.: Definitely. I don't think that's even necessarily a journalism thing. I think ableism is just everywhere. It's massive. It affects my life every day. It's harder than the illness itself.

[00:19:27] In 2022, I started to notice that the people in the Baltimore community that used to support me were no longer masking. And I have COVID and they were holding events without masks and COVID hadn't gone away. And these same people had been really serious about COVID a year before. So I called them out.

[00:19:54] And I no longer have any friends in that community, and I got no support for my book in that community. Because of that, I had a lot of support for my work in the Baltimore activist community. Now I have none, because I wanted them to keep wearing masks. I've been mistreated for MCS so much. I've gone to hotels, where I've just asked them not to spray the room.

[00:20:19] Which is a normal request that most hotels are pretty good about. But in some places, especially Miami, I've been yelled at for that. I've been treated so badly for the mildest of requests.

[00:20:32] Aaron Goodman: And those encounters are really challenging and they create an impact. It's also difficult when those kinds of reactions come from people we care about or think care about us. I have an uncle and I used to go to their place sometimes and they use a really powerful smelling laundry detergent. Yeah, it smells really bad and I really react to it very strongly. So the last time I was there they said out the sides of their mouths that it was a psychological condition and it's really hurtful. It felt like a betrayal.

[00:21:13] Justine B.: I'm so sorry. All of those stories break my heart. I hear them all the time. I just don't deal with people anymore. So I just it's so hard though ableism I don't know shows up a lot in people that you don't necessarily expect and so I have now learned to expect it from everybody and they can surprise me by not being it, you know,

[00:21:37] Aaron Goodman: I wanted to just take a pulse with you about something else. Another person who won't be named in my family of origin said this other person has serious illnesses. Those are real serious. What you have is, so comparing them to, and of course, diabetes and heart condition, cancer, those are very serious, right? And they are life threatening, but how do you view those? Can you compare these?

[00:22:03] Justine B.: I've been going through it a lot with that lately because a family member had cancer and, and I was like, I love that person so much. And I was so concerned about them. Um, I'm not denying how serious and terrible cancer is, but there has never been any room for the chronic illness.

[00:22:22] And the irony is that my mother had both. She had cancer and she had chronic cluster headaches. And she always talked about how the cluster headaches were worse, harder to treat. And she wished that the narrative paid more attention to that. It is terrible, and it is worse for MCS, but I do want you to know it's true for all chronic disease.

[00:22:47] Like, even people who have MS will feel like they are forgotten and not taken as seriously. And that's hard to believe when you have something like MCS, because you're like, God, at least you have an ICD code, at least everyone knows what your disease is. But all chronic diseases get marginalized, and all of them get treated as if we're just a little too fussy.

[00:23:12] Like we're not seriously ill.

[00:23:14] Aaron Goodman: Yeah. And about multiple sclerosis, if I understand it correctly, it was one of those illnesses that used to be dismissed by healthcare professionals. And then it became recognized. You must be aware of this. And, um, what does that make you think of, you know, when it comes to MCS?

[00:23:37] Justine B.: To be honest, I don't have a lot of conversations about MCS and I really welcome this podcast and I appreciate you doing it. Because, I'll be honest, the biological marker is going to show up one day. MS was considered psychological. Women were, mostly affects women, like all chronic disease, but patients were institutionalized.

[00:23:56] And then the MRI was developed, and they discovered lesions in the brain. In long COVID discourse, we talk about this. And I would say the same for MCS. Biological markers don't exist for a lot of diseases. Alzheimer's doesn't have one. The only reason MCS isn't taken seriously, this is my belief. I don't think they want to admit how toxic the world is.

[00:24:22] And I think it's political. It means those chemicals are really bad. And it might affect the way that they treat our air, our water, our products, and they don't want to do that. And so that's personally, that's my little conspiracy theory. But I think if it were anything else, but like the chemicals produced by our corporations and our systems, our utility systems that were making us sick, they would have done something about it.

[00:24:49] Aaron Goodman: As we aim towards maybe wrapping up, it's been fascinating again talking with you. Would you like to share anything else or let us know what you're working on these days or what you might be moving towards?

[00:25:00] Justine B.: Yeah, I do have this book I would promote, if that's okay. It's called They Killed Freddie Gray, The Anatomy of a Police Brutality Cover Up. And so Freddie Gray was a famous police brutality case. And I obtained evidence about what really happened and how it was covered up at every level of government.

[00:25:16] And it's really the story about this community of witnesses who saw what really happened. And because they were poor and black, they were just shut out of the real narrative. I would like to encourage more interaction. I would like disabled folks to be more aware of the criminal justice system and to fight for it, because it will affect you too. And I would like criminal justice people to be more aware of disability. I think we need to be united right now.

[00:25:43] Aaron Goodman: You've been listening to the Chemical Sensitivity Podcast. I'm the host and podcast creator, Aaron Goodman. My new email is aaron at chemical sensitivity podcast dot org. The Chemical Sensitivity Podcast is by and for the MCS community.

The podcast is generously supported by the Marilyn Brachman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit ChemicalSensitivityPodcast.org. Your support will help us continue making the podcast available and creating greater awareness about MCS. To keep up with the Chemical Sensitivity podcast and learn more, follow the podcast on YouTube, Facebook, Instagram, X, and TikTok. Thanks for listening. 

The Chemical Sensitivity podcast and its associated website are available on are the work of Aaron Goodman and made possible with funds from the Marilyn Brachman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public about multiple chemical sensitivity.

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