Annie Segarra has spent most of her life being misread. As a child, her physical limitations were seen as laziness. Her neurodivergence went undiagnosed. Her pain was often dismissed. Even her queerness, which she didn’t come out with until college, was a quiet presence no one around her knew how to name. From language to health to identity, people rarely saw her for who she was.
“I just felt very isolated and lost,” she says. “There were misunderstandings all around.”
Born in the U.S. and raised partly in Peru, Spanish was her first language, which made school difficult in ways that went beyond academics. At the same time, her body was giving her signals that adults refused to hear. “My Ehlers-Danlos syndrome was not diagnosed, and people were under the impression it was because of my weight or because I was lazy.” That shaped how she was treated, not just by teachers or doctors, but by the world.
It wasn’t until her early twenties that things became impossible to ignore. A rapid health decline left her unable to walk long distances. She became bedbound. Doctor after doctor told her there was nothing wrong. “I spent years where doctors would not listen to me,” she recalls. “They said, literally, ‘There’s nothing wrong with you.’” Alone in her room, she turned to the internet, first to search for answers, and then to find people. In that process, she discovered the disability community, and herself within it.
What began as isolation shifted into a sense of recognition. She was no longer guessing at what she was going through. She could name it, and she could speak about it. “I wanted to be able to use storytelling as a tool for change.” Online, that meant video essays. In real life, it meant advocacy that came from lived experience, not abstract ideas.
“My focus became largely on disability justice and accessibility,” she says. “Once again, because of personal experience with it.”
Even then, understanding herself as disabled took time. For years, Annie considered herself a strong advocate for others, especially her younger sister, who is autistic and minimally verbal. “I saw myself as a neurotypical ally,” she says. “She’s autistic, and I’m not.” That belief didn’t hold. After learning about her own autism, the framing changed, and so did her role. “I definitely learned that that was actually not the way,” she says now. “I don’t speak for her.” That shift made her think more critically about allyship. Especially the kind that puts disabled people in a passive role, and non-disabled allies in control. “There is this disconnect where [non-disabled] people believe that disabled people are not autonomous, and that they get to play a kind of savior or hero role,” she says. “A true ally is going to work with you, and not in the name of you.”
That understanding came with another realization: how much of her adult friendships had gravitated toward others who were, like her, queer, neurodivergent, or disabled, even before they had the words. “We kind of find each other despite not being diagnosed, or not being out, or not identifying with these words,” she says. “These similarities are still underneath the surface.”
Community, for Annie, isn’t abstract. It’s where she feels the least guarded.
“When I’m among community, I don’t have to justify anything,” she says. “If I have to explain something, it’s not met with unsolicited advice or judgment. It’s just, ‘Oh, you experience it that way? Interesting.’ And we move on.”
That sense of ease doesn’t come easily to everyone. Annie knows not everyone wants to join a community, and that rejection can come from many places. Sometimes it’s about privacy. Sometimes it’s vulnerability. Sometimes it’s internalized shame. “There’s a possibility that there’s some internalized ableism to work through,” she says. “If it is shame, then maybe some healing can come from looking at it directly.”
Out in the world, though, shame often gets projected back onto her. Especially when it comes to mobility. After surgery, she began using a wheelchair but could still stand and walk short distances, a fact that seemed to confuse or provoke strangers. “I’ve been harassed multiple times if someone sees me cross my legs in my wheelchair, or stand up to grab something,” she says. “People think that if you can stand, you must be lying.” The reality is more complicated. “I can force myself to walk. But I can’t do it very far, and I can’t do it very long. So I use my wheelchair whenever I need to.”
To name the issue, she launched the campaign #AmbulatoryWheelchairUsersExist , which continues to resonate years later. The core idea is simple: the ability to walk sometimes doesn’t cancel the need for a wheelchair. But public reaction has shown how deeply people cling to binary ideas of disability, you’re either “really” disabled, or you’re not. That thinking has consequences. “At this moment, I’m in pain,” she says plainly. “But people assume that if you look fine, you must feel fine.”
These experiences have made her cautious, not just about how people treat her, but how society trains others to respond to disability. She’s skeptical of “empathy-building” exercises that simulate blindness or wheelchair use.
“You do it for a day, then go back to your normal life saying, ‘Wow, that was so hard.’ And what you walk away with is pity, not understanding.”
For her, understanding takes time. It takes listening. And most of all, it takes disabled people leading the conversation.
Representation helps, but only when it goes deeper. Annie has seen shows like Special , Everything’s Gonna Be Okay, CODA , Crimp Cramp, Good Bad Things (film) and Love on the Spectrum (tv series) make an impact. But she knows media visibility doesn’t guarantee empathy. “There’s a risk of people seeing them and becoming more hateful,” she says. “Visibility alone doesn’t do it.”
What’s more, she’s worried. Not just about online comments or ignorance, but about the broader political climate. “There’s a rise of fascism,” she says. “There’s a lot of hatred around people with disabilities. And dangerous lines of thought.” She’s heard public figures describe autism as a disease. She’s read comments saying disabled people are a drain on the economy. She knows where that language leads. “At minimum, it affects our self-esteem,” she says. “At maximum, it affects our physical safety.”
Even in schools, she sees how early the damage begins. “Disabled students are separated from non-disabled students,” she remembers. “And I remember wondering why.” That segregation, she argues, creates the foundation for lifelong ableism, the belief that disabled people are lesser, fragile, or burdensome.
“Why can’t disabled and non-disabled kids just mingle freely?” she asks. “Why do we keep structuring it in a way that invites that sense of hierarchy and discrimination?”
That question ties into nearly every part of her work: access, representation, education, and respect. And beneath all of it is one demand, not to be seen as exceptional, but to be given the same room to exist, make decisions, and be understood without judgment.
“People think disabled people are not autonomous,” she says. “Even family and friends fall into the trap of assuming we can’t make our own decisions.” Her work is a response to that, not just the visible parts of her identity, but the deeper fight to be trusted with her own story.
“My wish is that I’m the last,” she says. “And every time that wish doesn’t come true, it hurts. But I keep going. Because maybe one day, it will.”
Annie’s story isn’t here to comfort, it’s here to clarify. She speaks because too many people still misunderstand what disability looks like, what autonomy sounds like, and what it means to be seen on your own terms. And she reminds us that inclusion isn’t something we create for others, it’s something we’re all responsible for proving, every day, through how we choose to see.
