Setzer sells products made from the plant and because she also happens to have cystic hygroma, a cyst-causing condition that has left her needing facial surgeries and unable to close her mouth or eyes, strangers tend to hurl insults at her online.
She is used to it, she tells me on a recent afternoon.
She also finds it, “ridiculous that disabled people get talked to like that constantly.”
Normally, I wouldn’t give space to those insults. But when talking about Setzer and what she is trying to accomplish for her Virginia community, those comments matter. They show just how much her effort is needed.
Setzer is not a public figure. She doesn’t run a major company or any organization. She is just an ordinary person who happens to have an extraordinary goal: She and her husband want to create a space unlike any that exists near them. They want to build an accessible playground and a community center complete with businesses that will employ disabled adults and foster youths who are aging out of the system.
They envision the place bringing together people with visible, invisible and no known disabilities and allowing them to play, shop and, if needed, do their laundry together.
“We have big dreams,” Setzer says. “This is not like the end solution to ending inequality. But it’s creating something out here in the country where there is not a lot for the community.”
By “out here,” she means Powhatan in Central Virginia. But she could be speaking about many places that don’t exist within a quick drive from a metropolitan area, where accessible and inclusive spaces are more abundant.
By Setzer’s calculations, the closest accessible playground from where her family lives is more than 45 minutes away. And that’s just one. Others are farther. She says her town also doesn’t have a laundromat, let alone one created with accessibility in mind.
“It’s 2021,” Setzer says. “People with disabilities don’t have to be hidden away at home. They can be integrated into society if society is accessible.”
To look at Setzer’s Instagram page, feedingtube.fitness, which has 32,000 followers, is to see a confident, hilarious woman who doesn’t hesitate to hang the bag she uses for her feeding tube on a fence at a skateboard park. But she didn’t always feel she could be herself in public. She recalls growing up fairly isolated and not making her first disabled friend until college.
“For most of my life I never used my feeding tube in public,” she writes in that skateboard park post. “Partially because the world isn’t accessible for gravity bags . . . but mostly because I get stared at constantly for my face I didn’t need another thing for people to stare at. But, bump that. If I’m hungry and need to eat then I’m gonna eat. . . . Life is way too short not to do basic things like eating because you’re worried about stares or haters (or skaters).”
In another post, she lounges by a public pool in a lime green bikini top, revealing the feeding tube on her stomach.
“Most of the time it’s exhausting to be an example to the world of someone who is different but when ya girl looks this good in a bikini it’s just an added bonus,” she writes.
I first learned about Setzer’s story through her own telling of it in “Faces of Postpartum,” an online project created by Northern Virginia photographer Ariane Audet. The project offers raw looks at motherhood in the many forms it takes.
For Setzer, who is 30, motherhood came recently and suddenly. She and her husband, Brandon Setzer, took in one foster child in 2019. Then in September, they took in another, and in December, they took in two more. The couple now has four boys, ages 10, 11, 13 and 14, one of whom they’ve adopted. They also hope to adopt the other three.
“I’m sometimes asked about how you prepare yourself to foster a kid,” Setzer writes in that “Faces of Postpartum” piece. “My answer is: you don’t. In all honesty, foster care is rough, both for the family and the kids. You’re never sure who you’re going to end up with. Babies need all the same things (diapers, a crib, milk) but not teenagers. So you just wait for them to arrive, and then spend a lot of time at Target.”
She describes hearing the boys speak candidly about the trauma they’ve experienced in other houses and the family struggling together to get through online learning. She also writes about overhearing comments other children make to her boys about her. “What is wrong with your mom?” one asked during a Boy Scout gathering. “She’s fine,” her son responded.
“They often joke that they’ll always protect me!” Setzer writes. “I mentioned that a teenager yelled something at me the other day, and they were like, ‘WHO SAID THAT?!’ They’ll protect me until the sun goes down. . . . I also know that kids are kids, and mine are no different. They’ll stare at someone in a wheelchair, but it’s my job to tell them how to handle it.”
The couple has already found a place to build their community hub and have drawn up plans for it. They hope to fill the space with a coffee shop, a thrift store, a laundromat, a community garden and “a fenced in accessible playground for kids and adults of all abilities.” Now, they are concentrating on raising money for the project through a GoFundMe page and online auctions.
Since going public with their plans, Setzer has received many messages. They differ in tone from the ones attacking her but share a commonality with them. They, too, show her effort is needed.
“I LOVE LOVE LOVE this!” wrote one person. “I’m an OT so if you need any help with the accessibility factor in the playground please let me know!”
“I’m so excited about your vision and have been following along,” wrote another person. “I am an avid home gardener and am happy to help contribute where I can.”
“This is so exciting,” wrote yet another. “I’m glad this might happen in our community! With an adult daughter with disabilities having a place with WiFi and play area accessible to all even with her differences would be the best thing that’s happened in a long time!!!”
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