Activist Annie Segarra is on a mission to make disabilities more visible

To honor the 30th Anniversary of the Americans with Disabilities Act (ADA), In The Know is asking young people with disabilities about growing up with the law, and how it’s impacted their lives.

Annie Segarra spent decades without a diagnosis.

The 29-year-old, who was born with Ehlers-Danlos syndrome (EDS) — a genetic tissue disorder that can affect joints, skin and several internal organs — didn’t know she had a disability until she was well into her 20s.

In school, she struggled in P.E. class and never knew why. She couldn’t run as fast as the other kids. Sometimes, she’d pass out after showering. When she exercised, her face got extremely red.

It took years for her to realize that none of this was “normal.”

“All these were signs, if anyone had paid attention, that there was something wrong with my health,” Segarra told In The Know. “They would dismiss it as, ‘Yeah, this happens to everybody … She’s just out of shape. She just needs to lose weight.'”

At 23, she started experiencing sharp pains when she walked. She was using a wheelchair by the time she was 24. Still, she was 26 before she diagnosed with EDS.

That experience, which she said involved several doctors gaslighting her and dismissing her pain, is now driving the force behind what she does every day.

Segarra is a popular activist, influencer and content creator, boasting 20,000 YouTube subscribers and 25,000 Twitter followers. She’s incredibly vocal about disabilities and chronic illness, and has even launched her own campaigns centered around accessibility.

“After I received my diagnosis, I was just really excited to start creating content about EDS and about my experience,” she told In The Know. “The content that I create is meant to be extremely visible.”

Visibility is a key part of everything Segarra does — whether that’s interviewing other disability activists on YouTube or posting photos of herself using mobility aids.

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How’s everyone doing?? My brain fog & fatigue have been acting up, it’s been hard to concentrate and remember things, and I am struggling with my fatigue all the time, even on the “good days” where I manage to stay up the whole day. The combination of two sometimes makes it hard to talk, like I will become frustrated if someone asks me a question because my jaw and my cognitive abilities feel like they’re moving through wet tar.⁣⁣⁣⁣ ⁣⁣⁣⁣ In therapy, we’re wondering how much of it is #EDS flare-up related and how much of it is… depression? We landed on “probably both” Also, hormonal/chemical changes can affect how my EDS behaves, so I imagine the added stress has impacted me physically as well; and today as I write this, my back is out AND my ovaries feel like heavy and fragile marble eggs that send alarming pains with every step.⁣⁣ ⁣⁣⁣⁣ It’s been over a month in lockdown and while I was indeed accustomed to staying home most of the time… I wasn't ready for:⁣⁣⁣⁣ ⁣⁣⁣⁣ -increased daily exposure to real-life trauma⁣⁣⁣⁣ -all the eugenicism and ableism⁣⁣⁣⁣ -work/event cancellations⁣⁣⁣⁣ -the physical exertion of disinfecting groceries, packages, etc.⁣⁣⁣⁣ -mental illness triggers⁣⁣⁣⁣ -difficulty finding certain needs due to hoarding⁣⁣⁣⁣ -the impact of losing the already limited amount of outings I had⁣⁣⁣⁣ ⁣⁣⁣⁣ Stuff that was already hard, got harder. We leveled up in this video game called life.⁣⁣⁣⁣ ⁣⁣⁣⁣ Something I felt I could offer in this time is to share some of the things I do for my mind that have been beneficial for the sake of my mental health and personal growth re: the homebound and isolated environment. The video is up now on my channel, link in bio!⁣⁣⁣⁣ ⁣⁣⁣⁣ It weighs heavy on me how much of a privilege it is to prioritize mental health & self-reflection; please try and take moments for yourself whenever you can.⁣⁣ ⁣⁣⁣⁣ Always wishing you well, thinking of you often. I hope you are safe, friend 🙏⁣⁣ ⁣⁣⁣⁣ #ThankYouHealthCareWorkers⁣⁣⁣⁣ #HighRiskCovid19⁣⁣⁣⁣ #StayHome #AtHome⁣⁣⁣⁣ ⁣⁣⁣⁣ [ID: Annie is on the sidewalk sitting in a #WhillModelCI wheelchair wearing a face mask and sunglasses, a dog leash holding Bailey, whose tail is visible in the frame]

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“Creating visibility, and essentially normalizing [things like mobility aids] gets to speak to two very different groups of people,” Segarra said. “People who are just totally absent from these experiences, and people who have these experiences, but might feel really isolated in them.”

Another crucial word for Segarra: intersectionality. Her identity as a queer, Latinx, non-binary woman is front and center in everything she does, because, to her, activism is never homogenous.

A prime example came during the 2017 Women’s March, which inspired Segarra to create her own hashtag and advocacy campaign. Its name, “The Future Is Accessible,” is a powerful reminder that people with disabilities can’t be excluded from activist movements.

“’The Future is Accessible’” is a call for visibility and intersectionality; it is a call to prioritize equity and accessibility, to remember the disabled people in our communities, to integrate them, to uplift them and their narratives,” the campaign’s online description reads.

That doesn’t mean Segarra isn’t grateful for the activism of the past, though. The 29-year-old is almost exactly the same age as the Americans With Disabilities Act (ADA), the landmark legislation that prohibited disability-based discrimination in the U.S. She knows the law has changed her life in meaningful ways.

“I definitely feel such an immense sense of gratitude to the activists that made [the ADA] happen,” she told In The Know.

However, she knows the law needs to go further. Segarra says she’s “critical” of current anti-discrimination laws — especially because she sees contradictions in its enforcement all around her.

“That is one of the more like emotionally hurtful parts of it,” she said. “Like buildings being built, events being created, and it’s not until a disabled person says, ‘Hey, are you going to include me in this?’ that they’re like, ‘Oh yeah, I forgot you were there.'”

Segarra wants the ADA to be treated as more than an “afterthought.” She wants new laws that don’t treat people with disabilities like a “burden.”

In the meantime, she’s going to continue speaking out and fighting, making herself unquestionably visible in the process.

“By proudly calling myself disabled at every opportunity I can, hopefully it changes the way people think about it,” she told In The Know. “And so when we talk about disability activism, hopefully more allies are prepared to join in.”

If you liked this story, check out In The Know’s interview with Julian Gavnio, the disabled, transgender model calling for greater representation in the fashion world.

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