Environmental advocate, Sandy Wynn-Stelt, has become a leading voice on contamination awareness of PFAS, long lasting, manufactured chemicals that have been linked to harmful effects in humans and animals. Her advocacy efforts have uplifted community voices and led to more widespread testing and stronger protective measures.
Since 2020, she’s been an invited expert at several COMPASS risk communication workshops for federal agency staff where she shares her experience to help participants better understand the perspectives of the impacted communities that they’re working to protect.
But advocacy and risk communication were not part of Sandy’s original plan. “Full disclosure: I never intended to be any kind of activist. I was never gonna be active about anything, anywhere, anytime,” she declared.
— Sandy’s Story: “This really does impact people’s lives” —
When Sandy and her husband, Joel, moved into their first home in 1992, they felt they’d found a quiet retreat tucked away behind a Christmas tree farm. “We loved being surrounded by Christmas trees. We both worked in social services which can be really draining, so it was important to us to have a place where we could come home and sit on a deck and be surrounded by birds and wildlife, and just recharge our batteries,” Sandy explained.
Shortly before their 25th year anniversary, Joel was diagnosed with stage 4 liver cancer. He passed away 3 weeks later. “That’s kind of the prequel to the novel,” Sandy said.
A year after Joel’s passing, federal agency staff informed Sandy that her water had tested between 30,000 parts per trillion to 80,000 parts per trillion of PFAS. Current EPA drinking water regulations aim to restrict PFAS levels to 4-10 parts per trillion.
The Christmas tree farm across from Sandy’s home had been used as a disposal site by Wolverine Worldwide, a shoe company from Rockford that used PFAS to make one of the first waterproof shoes. “They had to dump all that tannery waste somewhere, and they dumped it in the 40 acres across the street from my house in giant trenches until it filled up,” Sandy explained. “My house happened to be the first line of fire.”
At first, Sandy didn’t fully understand the implications of the test results. “When they told me those numbers were high, I didn’t even know if high was good. Like, high in my bank account is good,” Sandy recalled. “When they told me that no one had drunk water with that much PFAS before, I high-fived people like, ‘go big or go home.’ Then they got really serious, and they started listing some health effects. When they mentioned liver cancer, I said, ‘Whoa! My husband just died of liver cancer.’ You could have heard a pin drop. I think that was the first time they saw that list as more than a handout. This really does impact people’s lives.”
After learning about the PFAS contamination, Sandy found herself with little to no resources and a myriad of conflicting information that left her feeling alone and deceived.
“You feel duped,” Sandy shared. “The fact that at some point there was someone who knew what was out there and chose to hide it from you — you feel duped by everyone. So when a government agency comes to you and says, ‘Your water is bad,’ it can become a very contentious kind of relationship if it isn’t managed delicately. I think that is why these COMPASS trainings are so important, because you really have to know how to thread that needle.”
— Threading the Needle: “Relationships Are Key” —
A message Sandy emphasizes is the importance of investing time to build relationships with community members. “I think scientists want to give their data and then swoop out. And I know everybody’s busy, but it may cost you more time in the long run,” she shared. “A lot of us who have been through this for some time, we go to meetings to offer support not only to the people in the community, but also the agency staff. We are there to let people know that the staff have helped us and will help them too. Those relationships are key. That’ll do you better than any degree you have.”
Recalling the interactions that have impacted her own experience and willingness to trust (or not), Sandy offered five insights to help others communicate risk to community members effectively and compassionately:
- Explain the Process
Forgetting to explain important parts of the process can inadvertently heighten fear and uncertainty. Sandy shared an example from her first experience with federal agency staff: “When they first asked to test my water, I said, ‘Sure. Bring everybody over. I’ll bake you coffee. I’ll bring you cookies.’ Then they show up at my house wearing hazmat suits. They were like it’s not a big deal, don’t worry about it. But you’re showing up in hazmat suits! It turned out that they were wearing it so that they would not cross contaminate, but nobody told me this. If you have somebody showing up at your house in a hazmat suit for any reason whatsoever, it makes you a little nervous. Then you’re giving me 30 pages of lab results that I have no idea what it says and nobody could explain it to me. There were a lot of mixed messages throughout which did not give me any confidence in them.”
- Help People Navigate the System
“Beyond getting this news, the other thing that was really hard is that there’s all these layers of government that make absolutely no sense. But when you’re in the midst of it, it just becomes this onion that you have to peel every step of the way. That complexity just feeds into people’s frustration, because you just want someone to do something. But sometimes, they can’t. Fortunately, I met people who were willing to take the time to explain the system and redirect us to the right place. Helping people find the right resource goes a long way.”
- Listen Longer
“Sometimes at community meetings people are livid. They take the microphone and they yell and cry. If you’re communicating risk and experience that anger, it would be helpful if you wait a second and listen longer to hear the real driver. You’ll likely find out that they are scared. They’ve got a wife who’s got cancer. They have a newborn. They invested all their money in their home and are worried about property values. You can’t take away the effects, but you acknowledge it and offer ways they can protect themselves moving forward. But if you just hear the anger and then respond back with anger or shut down, then you’re at a stalemate. Nobody’s going to get any help.”
- Don’t Hide Behind the Data
“Scientists feel really comfortable with data. I think they feel like they’re proving themselves, but it really becomes data overload. Then a lot of people feel like you’re hiding things. Community members don’t want the data. They want the bottom line. It works better to slow down and explain it in a simple way, then offer to give more details to those who need it. That does two things: 1) It doesn’t make us glaze over and think you’re hiding behind data. 2) It also gives a chance for specific groups to introduce themselves to you. Then you can build that relationship and do more relevant education there.”
- Share Your Why
“Doctors go into medicine because they want to cure people. Social workers go into social work because they want to help people. Environmental experts go into that line of work because they genuinely have a heartfelt desire to protect the environment. I wish scientists would communicate that to community members, that they don’t do this for any other reason than to protect people and nature. It would help all of us communicate a little bit better.”
Risk communication can be a challenging process to navigate, especially in situations where there are few answers and the path forward is still uncertain. But taking the time to hear and learn from community members and share more of your own story can help everyone get closer to the next right step.