In her videos and posts, Segarra tackles stereotypes, misconceptions and the media’s failures in covering people with disabilities.
Segarra says she uses her online platform "to just get things out" and to educate.
She talked to WLRN’s Nadege Green. You can hear/read some highlights of their conversation below.
WLRN: You decided to take your own personal story about living with a disability onto social media and YouTube in a very intentional way. Talk to me about why you created this platform that now has thousands of followers.
Segarra: I've been creating content on the Internet since I was a teenager and it just came very naturally to me to write about myself in public. I think that's a very millennial thing. I'm 28 and as my life progressed in terms of like coming out as queer and then as my health started to decline ... I discovered that I had a degenerative condition called Ehlers-Danlos syndrome.
I was always documenting things for myself in kind of a cathartic way and then [I] ended up also being able to provide solidarity for other people and kind of an education or awareness for people that didn't know that these experiences existed.
You were diagnosed with Elhers-Danlos Syndrome. Tell me more about finding out about that diagnosis and what that was like for you.
I think around the age 22, 23 my ability to stand up started to decline because I was working in the restaurant industry and that required me to stand up for like eight hours at a time. And as time passed, I would have to ask to sit on a stool after like five hours of work, then four, then three and two until I couldn't stand up for more than like five minutes at a time.
Doctors kind of just dismissed it. The first thing they said was, “Sounds like you're having a tough time at work. Just go home. Put your feet up you'll be fine.” That was like the first clinic that I went to.
I had to on my own buy myself a cane because I knew that without a mobility aid I wouldn't be able to keep going out. I wouldn't be able to keep working.
[I] continued to see more doctors. I kept declining and losing ability to walk. I had to discover the diagnosis myself. I had to do the research and Google and talk to people who had similar symptoms and I told my doctors like I think I have Ehlers-Danlos Syndrome. I need you to test me for it.
And then the response was laughter. It was like, 'Haha you don't have that.' I had a meltdown in the office, like started screaming and throwing my fists onto the desk of the doctor, just like big emotional break down, like 'you're not listening.'
Then another doctor came in and it was a female doctor and she asked why I was crying.
And she's like, "I've never heard of that" and looks it up. [She] looks at a scan of my SI joint, which showed that essentially I was walking on a dislocated pelvic and she says to him, "She could have this."
And throughout all of this, you were documenting what is happening to you…
I started documenting things as soon as I got my first cane, probably around 23. So young people using a cane is a social thing that doesn't happen too often. I would get a lot of looks because of the cane. I would get people asking me if it was for fashion.
I learned right away that being a young person and being a person with an intersectional identity — being a person that was of color and plus size, it was going to be a lot of judgment for using the cane. So I learned that immediately and now I have the same kind of attitudes because I use a wheelchair whenever I have to do something that's long distance.
One of your videos, with more than 63,000 views on YouTube, is titled "How To Spot a Fake Disability." Tell me about what inspired that video.
“How do you spot a person with a fake disability,” came from the fact that I saw that that was something that people were looking up. So I was like, "OK, if they're going to look it up, I want them to find this video instead" because I had already experienced a lot of people accusing me of faking my disability.
People don't realize that disabilities are in spectrums and can also be very fluid.
Just like my walking. Some days I cannot stand up even for a moment. And some days I can last maybe five minutes on my feet, like it's fluid.
The tamest one was the first time I used a wheelchair and it was like this foldable manual chair that I took out of my trunk.
And a woman apparently saw me do that and came up to me in this store and she said, "You know, I saw you get your chair out of the trunk and I just want you to know that if you would just lose some weight you probably wouldn't need to use that wheelchair."
It was a mixture of fat antagonism and ableism. She was saying that I was a lazy fat person.
It’s one of the dehumanizing experiences that makes me so passionate about disability advocacy.
Tell me more about how infrastructure impacts how you're able to or not able to navigate certain communities or places here in South Florida.
The sidewalks all over Miami are kind of hard on my wheelchair. There's a lot of just broken sidewalks, a lot of construction. The best accessibility I've found as far as streets is South Beach.
Almost everywhere I go it's kind of difficult. I have to emotionally prepare myself to have a difficult time—all the different bars that I go to and how difficult it is for me to get around some of the spaces.
There’s one hotel I go to where they have a lift outside, but I have to wait for someone to come open it with a key. So I’m waiting at the bottom of the stairs.
It takes literally 60 seconds — less, 30 seconds probably — five steps up, lobby, five steps down, pool. While my experience is I have to wait 10 minutes for someone to bring me a key to open the lift. I get in the lift, get into the lobby, I have to take an elevator down into the basement, then go all the way around, a big giant u-turn around the hotel and then I get to the pool.
So it probably takes me like a full 15 minutes.
So all of these, like, weird alternate paths where I have to pass by, like the trashcans on the way and things like that.
When you have to use the same route as trashcans on the way, when you have to pass the same routes as trashcans, you feel like trash.
My city has forgotten me kind of a feel.