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The Fight For Zero
Meet Stel Bailey, A Cancer Survivor, Mom, & Health Advocate Bringing Awareness & Action To PFAS Contamination & More in Florida
Welcome to Solutions September, a series where we talk to real people working for real change to help our environment. In a world with so much going on, it’s hard to know how to help. We’re asking people in many different sectors what inspired them to get involved in the fight to save our planet and how we can all take our anger and turn it into action.
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Today, we’re introducing you to Stel Bailey, the chief executive director of Fight For Zero, a co-facilitator of the National PFAS Contamination Coalition, and a recognized environmental health advocate who has worked as an assistant environmentalist collecting samples and gathering critical data.
I was lucky enough to meet Stel, Dr. Julie Clift Greenwalt, and many others in 2018 at a town hall meeting in Satellite Beach, Florida, to discuss the water quality.
Stel’s life took an unthinkable turn in 2013 when multiple people in her family (and their dog) were diagnosed with cancer. Through extensive research, she learned that her family was exposed to manmade substances and legacy contamination from the Department of Defense and space industry activities. There was careless dumping of hazardous chemicals into the county’s waterways, multiple cancer cluster investigations dating back to the 1970s, ALS cluster concerns, and in 1978 the drinking water in Brevard County was rated the worst in the United States.
You’re gonna love Stel. She is passionate about clean water, toxic exposures, the environment, and disease prevention. She leads creative efforts to inform the public on the burdens of contamination and related chronic diseases. As a mom of two, she strives to transform her children's future by taking action to protect their future.
Q: Fight For Zero is a grassroots organization founded by a group of cancer survivors and their families. Can you tell us more about your story and what inspired you to get into action?
Stel: Where do we start? No one ever anticipates getting into this kind of advocacy work. It all started for me in 2013. My uncle, not blood-related, but he actually lived with my family because he was married to my dad's sister, who was my aunt. She had passed away and he had nowhere else to go, and so he lived with us most of our lives. He was diagnosed with cancer.
We didn't think anything of it. We just thought, “Oh, old age, you know, that really sucks.” He passed away pretty quickly because it was very advanced.
A few months later, our family dog got cancer. Still, we didn't think much of it, as the dog was old too. When my 21-year-old, brother was diagnosed with cancer a few months later, we all started thinking, “That’s a weird coincidence.”
Three months later, I was diagnosed with cancer. My husband served more than a decade in the military and he was deployed during this time. I was pregnant and giving birth to a baby completely alone, and I was also facing cancer and they didn't send him home when I got diagnosed with cancer. He did come home from deployment in Afghanistan, a few months later, but that's not even the crazy part.
My father was diagnosed with cancer too. It was like, “boom, boom, boom, boom.” It was a whole new world for our family. We had no history of cancer, so the whole experience really hit us hard. We had no insight into what caused all this cancer, and we all started questioning things. We had all these experts—oncologists, epidemiologists, and others—coming out of their way to come into the room at the hospital and talk to us and ask questions like, “Where did your family grow up?” We all started to realize; this isn’t normal. This has got to be environmentally caused.
We were offered genetic counseling and testing. We sat down with genetic counselors and they took our blood and they did not find any mutations. They were just really amazed by our case.
When I was told I was in remission in 2014, I made it my life mission to figure out what happened to my family. I had no idea what I was doing. I knew something wasn't normal. I had no idea how I was going to take this journey, but I just knew I had to start somewhere.
I started putting it out in a Facebook group and asking people, “Do you know anybody that was diagnosed with cancer?” I asked people I grew up with and went to school. Surprisingly, because I had shared a lot of my cancer journey online, I started getting people that came to me and said, “I also was diagnosed cancer.” They just weren't as public about it.
Because I was willing to put my story out there, people felt like they could trust me and really confide in me. I started getting people I went to school with tell me about kidney tumors they had removed and more. It was really incredible how I started this list in the area that I grew up in, staying within about 20 miles of where we lived, but then I started getting people outside that area. I wanted to count them too. As I was collecting those cases, it went from ten people to forty people and then we were getting hundreds. Today, we’re collecting data and stories from all across the state.
I called the Department of Health and told them, “I've got this list. My entire family got diagnosed in the same year, our next door neighbors got the same cancer as my dad. Her two sons has cancer, and one son died at 19, and we had seven other cases on our street. Is this normal? They said “Yes, it is normal.” The director didn't want to have the conversation. He gave me the runaround. He said, “Listen, I had cancer too. People get cancer.” That was his response.
If it wasn't for moments like that, I don't know if I would have kept doing the exhausting work of constantly researching, pulling archive newspapers, and going through libraries. I was 24/7 invested in this project, and the more I researched the more I found, and the more I couldn't stop.
I was collecting all this stuff for years and then fast forward to 2018 and that DOD report came out about PFAS. It dawned on me, because I saw that Patrick Air Force Base had 4.3 million parts per trillion. It was like a light bulb that went on! I started being really loud all over social media.
[Editor’s Note: A July 2021 report from the DOD inspector general on PFAS found that the Department of Defense waited five years to warn military members about the dangers of PFAS and potential contamination. The current EPA health guidelines for PFOA and PFOS are 70 ppt.]
I had an oncologist (Dr. Julie Clift Greenwalt) reach out to me who also had a rare cancer. Her best friend died of a rare cancer. They went to Satellite High School, which is next to Patrick Air Force Base. She wanted to collaborate and push for a state assessment. We continued the crowdsourcing efforts, and we were able to get that state assessment, which showed there was statistically higher cases of cancer in two zip codes. So, that's just the beginning of our work.
In the midst of combating the PFAS, I went and knocked on doors for three weeks straight and I had printed hundreds of flyers. I was just handing out information, letting people know about the PFAS in the water. As I talked to more neighbors, they started confiding in me, inviting me in the house, and taking me to their backyards saying, “We uncovered this mortar. We uncovered these rounds. We uncovered this military debris.”
We uncovered a whole other environmental disaster on top of that while we were looking into. That’s how our work has been ever since, we just kept uncovering, one environmental disaster and another to another. That’s how we discovered the South Patrick Shores ‘dump,” as we call it. [Learn more here.] We started metal detecting yards and we were able to unbury a bunch of debris in people's yards. We decided we needed to do independent testing. We started embracing science. That’s what the naysayers kept going to, saying “It’s not in the drinking water. It’s only this many parts per trillion. Our science says it’s safe.”
We decided we needed to start doing the science and learn more what this parts per trillion means and what the safety limits are. Of course, we learned that, there are no safety limits set in the State of Florida, and officials are using an unenforceable 70 parts per trillion health guideline from the EPA.
PFAS testing is not cheap. When we started testing, it really pushed local government and others to start doing their own testing. We called environmental scientists at their firms and asked them for insight and if they would be willing to volunteer their time and teach us how to read all of the testing that was coming back. We’ve started slowly making connections with labs as well. We reached out to the experts, and that's how we learned about testing and also public records.
Q: Tell us more about some of the backyard materials you were uncovering and how it got into people’s yards.
Stel: Back in the 1950s, they used this area as a landfill, and they actually burned this debris. We were digging up rounds, mortars, and we even had to call the police one day when we uncovered a mortar because we were scared. We didn’t know if it was going to detonate. The military came out, and I don't know how to explain it. It was just the most bizarre thing. They were really quiet. They put this thing in a box and put it in the back of their car and left. It was like the Secret Service or something you would see in a movie. They didn’t want to talk about it or explain what it was. They got in, got it, and left and took it somewhere else.
We were uncovering glass. There was a refrigerator at one point. We've seen airplane parts. So that that has been a battle, and there was a formerly used defense site designation. Right now, they're in the middle of putting together a project and they suspect that there's VOCs in the air. They're testing for that, and we actually have been writing them all week, trying to ensure that the communities are informed. The communities have concerns. They don't want the government having access to their yards. We are working to put an established organization that has a good working relationship with this community as a stakeholder, as the investigation continues. We would like to be invited to the table, because they need someone to advocate for them. It's a very scary situation for this this community. Everyone is worried about property values.
[Erin’s Note: For years, people had found fuselages, wings and other airplane parts, when homes, pools, and other infrastructure were built in South Patrick Shores. Bob Bowcock (my amazing water consultant) and I met with the community in Satellite Beach in 2018 and Bob theorized that soil vapor intrusion into homes was making people sick. He was right!! A recent presentation by U.S. Army Corps of Engineers to state and local government officials noted that indoor air quality samples show that homes were “potentially impacted by Navy-derived waste materials.” To learn more about the current situation, check out this article.]
The neighborhood has Satellite Beach as the address, but they're actually technically unincorporated with the county. So it's a county neighborhood but they use the Satellite Beach zip code, and Satellite Beach as their address, as they all shop and they live there. I've noticed something as I dug deep into in Florida is that a lot of unincorporated areas are heavily polluted.
Q: How do you deal with feeling discouraged or setbacks?
Stel: Even when you start getting discouraged in this work, I feel the universe sends something your way to help you realize you’re on the right path. Like when the oncologist came along, that was a defining moment. If she hadn’t spoken out, I don't think we'd be where we are today. I always try to look back at the key players who helped. This was a community effort. I'm always trying to put that message out there. It's so important that everyone is working together; not one person can do it.
I'm so desperate to educate people on these environmental issues. My experience really woke me up to a whole new world that I never knew about. It took my family getting cancer to realize that our ecosystems are being poisoned. There's so much pollution. There's so much corruption.
One of the things I specialize in is community outreach and engagement. I feel like I am that connection to try to get people to learn more. We need as many people to be aware because with awareness brings action.
Q: What does it means to strive for zero pollution in the ecosystem and how you're advocating for that?
Stel: The whole fight for zero concept came about because I was at a town council meeting. We had found that there was 22 parts per trillion of perfluorobutyrate (PFBA) in the drinking water at Satellite High School, where we were also finding higher rates of cancer among the students.
When I asked about what action steps they were planning to take, officials told me that it was below the standard. I blurted out, “It should be zero. Why are we not striving for zero?”
I'm a leader in the National PFAS Coalition, and we think these chemicals need to be regulated as a class. We shouldn't be just going after PFOA or PFOS. We’re also working to get regulations to 1 ppt. I know it’s not zero, but it's much better. It gets us closer to that zero goal, and that’s how I feel about every harmful, manmade contaminant out there found in our drinking water across the nation, and even groundwater and in people’s wells. It’s disgusting to me that we’re allowing any limits. Who is influencing those limits? The polluters.
When I think back to what happened to my family, we drank straight from the tap growing up, and now it just makes my skin crawl. Every single glass that we drank, it’s not just 22 ppt, it adds up, especially in a child’s body. That’s how I present it to our representatives. We’re not just drinking 22 parts per trillion. You need to times that number by how many years we've been exposed and in our drinking water. We know these chemicals build up in the body.
It’s funny because I can’t get to our politicians talking about health or even children’s health. What resonates with them is when I talk about how this situation is killing our economy. I have to take a completely different approach. You would think that kids getting cancer would somehow get through to them, but you have to learn about your representatives and what’s important to them and be able to steer the conversation around that.
Q: How do you define success in your work? What are some of your biggest successes so far and what are you still working on?
Stel: You have to celebrate the wins. Sometimes a win doesn't feel like it's good enough, and that can be discouraging. For example, the PFAS Action Act of 2021, I celebrated that it got through the House. I know that it still has to go through the Senate, but getting through the House is a really big deal. I think success is also sometimes as simple as awareness. I'm incredibly proud of everyone within our organization that continues to educate their neighbors, friends, and families. If we didn't have that education and the awareness, we wouldn't have the action and people on the ground, volunteering to do citizen science, and volunteering to help us on others projects that we're working on. We are so excited about creating new projects and learning more and embracing science. I never thought I was going to be a citizen scientist in my life.
[Editor’s note: Fight For Zero has partnered with researchers from the University of Florida in a community-driven 3-year study in Brevard County on PFAS and other contaminants to help build resilience to environmental contamination in the face of flooding and hurricane risks.]
We’ve done several projects, and one of them had to do with the manatees. It was as simple as collecting muck jars of water and that muck had poop in it. I'm telling you right now we were out there collecting poop muck. We sent over two hundred jars to Tallahassee and that made such an impact. They approved billions of dollars to go to the manatees because so many manatees were dying off because of our water quality. To us, that was a win! It made a statement and got attention, and it made a difference. The funding didn't go toward our organization, it went to Save the Manatees, and that's what coming together is all about.
If we can get everyone doing projects like that, regardless of who may get the funding at the end of the day, the money is going toward a cause that we all are passionate about. We are all on the same path, maybe taking different routes to that end goal, but it’s all beneficial.
Yes, we definitely celebrate the wins and sometimes they are small wins. A win is when you’ve got a community on board; when you've got a community speaking up and using their voices. The movement is not about me. I’m helping these communities by amplifying their voices and making their stories heard, and ensuring that they have the proper resources to be able to take on these challenges.
The win is when a community realizes that they have the power to take on challenges—that’s the best win.
What do you learn from Stel’s story? Are you inspired to take action in your community? Let us know in the comments below!