The Future Is Accessible
Sept 7, 2018 at 4pm
ANNIE SEGARRA: Well, today I'm here to talk about a campaign I started in January 2017, called The Future is Accessible and essentially, how I arrived to come to that campaign, which is kind of both a demand for intersectionality and kind of a screaming at the erasure of intersectionality [chuckles] and therefore, how I found my intersectional activism. I'm a person who is multiply marginalized: I am Latinx, I am queer, I am disabled. And just being marginalized didn't make me a woke person. It didn't mean that I knew that the discriminations and the antagonism that I was experiencing was even wrong. I accepted them as things that I needed to conform to. So I'm here essentially to talk about like that little journey. Like, what happened that led me to this intersectional activism that I currently have.
So being Latinx, that played a, kind of a bigger role in my childhood because even though I was born in the United States, I was raised in Peru for the beginning of my life. And so Spanish was my first language. I had a Peruvian accent. I came back to the U.S. with those things in hand, and it wasn't met very kindly. [laughs] It was like everyone from fellow students to teachers were rather cruel because I didn't know English and because I had an accent. And I guess, the mixture of the fact that I have brown skin as well is just, you know, it had the whole package that made people very angry.
So in my little child mind, the answer to all this antagonism was conforming. The answer was, OK, I'm gonna go home. I'm gonna study English. I'm gonna speak English better than all those people who are making fun of me. I'm gonna watch Clueless every day to learn the American dialect, which was basically, you know, the strategy there is overreaching and then landing somewhere in the middle. Which is why I have the voice that I have today. It’s like overreaching, landed somewhere in American theater dialect is kind of how I talk now. [audience laughter]
And in conforming, yes, I gained the privilege of being an English speaker that spoke English very well and communicating myself very well. This is not a privilege that I see my mom have, who, she is a Latina, she's an immigrant, she was having difficulty learning English as well. And I will notice the difference between a stranger talking to her on the phone, and then when they get me on the phone, their attitude changes a lot.
So I also, I think during that time, was dealing with this antagonism of I was showing a lot of symptoms of autism like flapping, jumping, stimming in the classroom, which got me into some trouble ‘cause I wasn't diagnosed. I'm still not diagnosed, but. So there was this nice intersection of racism and ableism that I was experiencing because not only first of all, that I was being called ‘stupid’ for not knowing English, but also ‘crazy’ because I was stimming in the middle of the classrooms. And that was very ostracizing, and I didn't have the language for that.
I’m saying the sentence right now: I was dealing with this intersection of racism and ableism in the classroom. And as a kid, no one's telling you those things. No one's telling you the oppressions that you're facing, and you're kind of trying to navigate it completely on your own. So again, my solution to that was conforming, which is something that I feel kind of really resentful of, very sad about. And so as much as I was dealing with a lot of internalized racism, I'm now 28 and trying to reconnect with my Latinx roots to try and kind of do some healing in regards to that.
Followed by, again, another intersection of, like… This is just gonna keep happening. Basically every little period of my life is filled with intersections. I think I have a very cliché coming out story in that I knew I was queer probably around the age of 14. And because there was a lack of representation, couldn’t really identify it, right? My idea of what being a queer woman was like: is like a butch woman, and I wasn’t a butch woman. So [chuckles] I can’t be queer! No.
And I was dealing with that kind of repressed identity on top of the fact that I was dealing with undiagnosed body dysmorphic disorder. If you don't know what that is, I’ll try and shorten it. Basically, it's a mental illness where I don't see myself clearly. It's a little more complicated than that. I kind of hallucinate what is in the mirror. I kind of hallucinate what I look like. Sometimes my face can be an absolute blur. I can look in the mirror and see like a caramel-colored rhinoceros. [chuckles] And it leads to very intrusive and depressing thoughts. So when I was 12 years old, my belief was that everyone who looked at me became nauseous at the sight of me, and so I didn't deserve to exist. I didn’t deserve to take up space. Those thoughts can very easily, if you can imagine, become suicidal thoughts.
So at the age of 12, that's what I was dealing with. And, again, the big issue there is that there was no one to kind of say, “Hey! There's oppressive systems that are really messing with you here, and you do have a right to be here. And you do have a right to exist and to take up space.”
Again, my way of dealing with that was to hide and just kind of obey those intrusive thoughts and be like: you're right, I don't deserve to take up space. I'm gonna hide in my room. I’m gonna try to remove my existence from this planet. And so this comes and meets in this like weird intersection moment in time, rather, as opposed to an intersection of identities, where when I was 19 in college, someone did finally kinda shake my shoulders and go, “I don't think you see yourself clearly.” [chuckles] “I think you have some healing to do.” And that was a professor of mine in university, and it was the first time that someone said, “Hey. Hold on. Hold the train. You're not doing OK. You should probably take some time and figure that out.”
So I did that. I literally took time off of college to– This is where, first example of lack of access and intersection of accessibility. I didn't have economic access to therapy. So it was kind of on me to do some self-therapy, to go to the Internet and look up everything I could about treatments for body dysmorphic disorder and just do them for myself. You know, do...there's different exercises like, just like mirror talk, like talking to yourself in the mirror, fighting intrusive thoughts out loud. And kind of step-by-step doing things that you're afraid of.
Like one of my biggest fears was going to the beach and being in a two-piece bathing suit. And I finally did that, and it was the scariest day of my life, possibly. And that probably sounds like a really weird thing to say, but my brain just kind of echoed every single movement that my body made. Like with every single step that I took, everything in my body just echoed so loudly, and I thought that it echoed just as loudly for everybody else. And there's no way to, you know, verify that. You can't read people's minds. But what I did take away from that was I finished the day and, you know, kind of made sure I was all here and said, “Wow, OK. Well, I did that. I made it. I survived that. We can try again tomorrow.” So all that to say, did a lot of self-therapy, did a lot of self-work when it came to things like that because of lack of access to–economic access to therapy.
And finally, the disability aspect: so we thought we were done when I talked about undiagnosed autism, and that's not the end of my disabilities, plural. So another undiagnosed thing that I had, that I wasn't aware of, that I'm aware of now, is that I have EDS, which is short for Ehlers-Danlos Syndrome. It's a genetic condition, a connective tissue disorder. And it manifests in a lot of ways. And for me, it kind of means that literally every single part of my body has some kind of malfunction. I'm hard of hearing, I have trouble seeing, my body's in a lot of pain in my muscles and in my joints. I have gastrointestinal issues, a heart condition, trouble with my lungs. Basically, as strong and cool as I look, my body's very fragile and very sick.
And the process to getting that diagnosis was extremely difficult. I didn't know anything was wrong with me because symptoms were overlooked my entire childhood. I think that's also this weird intersection of Latinx culture and also how like Latinx culture can be combined with a culture of poverty. And what I mean to say with that is that there's this kind of belief system of like: if you're not dying, you're not going to the hospital. So I would have asthma attacks. I would get dislocations. I would have all these little accidents, and I just kind of personally threw them off to be that I was a very clumsy person. And that I was clumsy and I get injured and I get sick sometimes. I threw it away as a child because it was taught to me by adults: are you dying? You don't need to go to the hospital. Why does that belief occur is because the hospital costs money. [laughs] And if you don't have money, then it's not accessible to you. And therefore, your access to medical information is gonna be limited.
Eventually, I did have to go to the hospital because I was doing a job where I had to stand up for about eight hours. And eventually, after a period of time where I had to start asking my boss, “Hey, I need a stool. Because I'm in too much pain to stand up.” And I just thought it was because I couldn't wear heels. I just thought that I wasn’t one of those cool, strong chicks that can like wear heels at work. And I was like, well, I suck. I can't do that. I need a chair.
But then eventually came this ding, ding, ding moment of: whoops, I can no longer stand up past five minutes. Now it's time to go to the doctor. Which led them to tell me just, “There's nothing wrong with you. Just put your feet up for a little while. You'll be fine.” And obviously, I wasn't. So I had to persist on my own. I had to be a sick person and advocate for myself. I had to be a sick person and then do the work of research.
I had to be doing—feeling, sorry–fainting spells, brain fog. [laughs] Going through terrible pain flairs that feel like your own personal torture chamber, and in the meantime, be my own scientist, be my own lawyer, be my own researcher to try and figure out what was wrong with me because no one else was gonna take that initiative. And then when I did find the answer, which was EDS, doctors disbelieved me. They literally laughed at me and said, “Ha ha, you don't have that. Don’t be silly.” When I would ask to be tested, they just outright refused and then, you know, trinkled in some ableism and said, “But we gotta get you out of that wheelchair.” Because at that point, I had to get it on my own, because they weren’t helping me.
Also, to anyone that's going through this, yes, you can buy your own mobility aids [laughs] if you need them. That’s something that kind of, for me, hit right away. But for a lot of people, they’re like, if a doctor didn’t tell me that I could use a mobility aid, then I can’t. No, if you need it to get out of your house, do that, please. Please take care of yourself.
And eventually, the only way that I actually got tested for it was to throw this emotional, mental breakdown in the middle of a doctor's office. I had to get loud. I had to sit there in protest and say, “You're going to ruin my life.” ‘Cause they'd already done a bad surgery procedure on me that messed up my left leg permanently. When I started investigating my back pain, knowing the results of my last surgery, the doctor said, “You know what we’re gonna do? We’re gonna fuse your SI joint.” That’s like your pelvic area, and that's when I started bawling. I was like, you already messed up my leg. Not this specific doctor, but another doctor had already further damaged my leg. If they go in to try and fuse the joints of my SI joint, then I possibly could never sit upright again. I might live the rest of my life flat-backed. So that was scary enough that it made me start screaming in the middle of the doctor's office.
And an angel doctor walked in and said, “Hey, why is she crying? Oh. She thinks she has this? I've never heard of that. What is that?” She pulls it up on her phone. She looks at the scan of my SI joint area, which shows, by the way, that I was walking on dislocated joints. [laughs] And she just very quickly said, “Yeah, she could have this. Why are you antagonizing her?” And so he kind of like had to—still condescendingly—throw his arms up in the air and say, “Fine. Let’s get her tested.” And I was right. So I’ve had a disease my entire life that nobody knew about, and the only reason we found out about it was because I had to fight so hard for it.
So disability kind of really smacked me in the face as a human and as an activist. Even though I was kinda closeted in high school, I was doing activism like against Prop 8, going to protests, things of that nature. And even though my little sister and my best friend, she has autism and is not very verbal—she's moderately verbal—so I was kind of faced with that level of disability my entire life. And I cared for her, and I loved her. I’m saying this because you can love someone with a disability with your entire heart; it doesn't make you the best ally. It doesn't make you educated. It doesn't mean that just because you love them, that you're gonna know exactly what's right for them.
But when I ended up in that space, when it was me with the disability, all of a sudden, pssh: everything opened up in my mind. I discovered—intersection—that my favorite gay bar in my city was no longer accessible to me as a wheelchair user. Their best dance floor is on the second floor, and they do not have an elevator. And I’ve told them that a few times for years, like, “Hey, I love this place, but I don't feel welcome here because in order to get here, I have to climb basically Mt. Vesuvius. And it hurts, and I basically almost get a heart attack every time.”
No change has happened [laughs] because in– I don't know if it's been discussed already in this conference, but ADA in this country is really weird. Like there’s no— It doesn't work like you have health inspectors that come and inspect your space to see if it’s healthy. No. The only way that it comes into fruition is if somebody takes the initiative and files a lawsuit. I don't got the time or money to be filing lawsuits all over the place. So I didn’t. I don't. But that's basically the only action that actually has any kind of impact on whether or not a public space is gonna be accessible.
So let's cut to The Future is Accessible, which has happened because in January, February–I don’t remember the exact date of 2017—was the first Women's March. And you know, feminism, right? Supposed to be, based on its original definition, should be intersectional, should be for all women, right? But from my sick bed, watching the news, watching the images, it didn't seem like it was very accessible. And I heard from friends who tried to be in the marches, tried to be in the protests. They were like, “Yeah, this is not accessible. I have to leave.” And so that was really upsetting to me.
So I was inspired by–I think most people know this—the original campaign is from the 70s. It says “The Future is Female.” So when I saw the kind of erasure of disability activism in the Women’s March, I changed that to “The Future is Accessible.” And because of my experiences, accessibility is primarily, obviously, about disability activism, but it doesn't end at disability activism, either. It is ‘cause accessibility is for literally every single person. I think we're already clear that disability is intersectional, period. Because you're disabled and. You’re disabled and a person of color. You’re disabled and a religious person. You're disabled and a queer person. There’s always gonna be something else, right? You're disabled and a woman, at the most basic level of what feminism was portrayed as, in that Women's March.
So accessibility, in the way that I talk about it, as much as the primary focus is on disability, it's also about trans and queer people and their equal access to restrooms. It's about fat people and their access to something as simple as an airplane ride that doesn't squeeze the living life out of your hips. I'm sorry. My brain fog is hitting me at this point. Where is my notes? Look at me. Oh, see. Didn't even remember that I had my phone there. Right. It includes literally every single human being. It includes prisoners’ rights, sex worker rights, and everything that they should be allowed access to. The Future is Accessible: disabled people, people of color, queer and trans people, people of all genders, sexes, sizes, and classes.
What I wrote here—I'm hoping, is my final notes on it—was: we all deserve the right to exist in public safely, our identities not being a target for violence and discrimination. We deserve access to good and fair healthcare, no matter how little money we might have. And as someone that lives in multiple intersections, I know what it feels like to go unheard, to be dismissed and gaslit. But I've also seen the power of what happens when we listen and pay attention, when we learn to heal internalized antagonism, heal our prejudices against others. Because those can often be one in the same. Our prejudices against other people often come from some kind of internalized hatred.
So the future is accessible if we listen to each other and if we work together instead of living with horse blinders, instead of not listening to each other. If we share, and as much as we share, we're willing to listen to other people's narratives. Thank you. [laughs]
[Video slide caption: Questions & Answers with Annie Segarra]
ANNIE: OK, so someone wrote, “I love the idea of The Future is Accessible. Is there a larger context, an organization, website, efforts, etc.? And/or can I get that on a t-shirt?”
Yes. T-shirt is primarily what that campaign is. So currently, I believe they're available on bonfire.com/thefutureisaccessible and also in my TeePublic store, which is also called Annie Elainey. So they're available both there.
Something that I do as a content creator oftentimes is actually just start conversations, which is why kind of my final notes on that is about sharing our narratives and listening to other people's narratives as well. I think that the thing that I contribute to activism as much I'm basically mostly in my bed all the time, is for people to have these dialogues. I want people to share all the time because without sharing, we would never know, like I said, the oppressions that we're facing. We wouldn't know that they're wrong. We wouldn't know what kind of actions we can take against them. So I always want people to share their narratives, share their stories, and equally advocate for people to listen to them. So The Future is Accessible is primarily this very big conversation hashtag mostly on Twitter. That's basically where a lot of my activism goes. So people will use the hashtag when they see a really good example of accessibility. They use the hashtag when someone is very inaccessible. And so it's used for a variety of reasons. It's often in celebration, often in calling in—I prefer calling in versus calling out—and telling people, “Hey, your space is not accessible. So get with the program because the future is accessible.”
And larger context: organizations, website. Yeah, there's no website. It’s just the conversation; it’s just the hashtag so far. I don't know. There are people who– There's another conference, I think, that they titled it The Future is Accessible, no affiliation with me. It's weird. When they started that, people came to me to ask me like, “Did you approve of that? Are you working with them?” Said, “No. It’s the Internet. So things just belong to everybody.”
That was something I had to learn right away too, about Internet activism is that when you put stuff out there, unfortunately, sometimes it just kind of belongs to everybody else now. Like spoonies, right? So if you don’t know what a spoonie is, it’s someone with a chronic or mental illness, who uses the Spoon Theory. Which is basically kind of equating spoons as a symbol for the limited energy you might have as a chronically ill, a mentally ill person. And the person who created it, she created it. I’m having brain fog right now for her name. Oh my gosh. [chuckles] And so she's always gonna be the creator, but it kind of ended up being its own culture. It kinda, people kind of take it on for themselves. They create their own kind of apparel with the word and stuff.
And so as a creator, you probably feel like that's weird, like, that's mine; I created it. But when you contribute to creating a culture, yeah, it doesn't belong to you anymore. So The Future's Accessible. I’m sorry. Mumbling my words now. [singsong] Brain fog’s at the hit. Now people, I’ve seen people creating their own t-shirts with it. Now, like I mentioned, that conference uses it as their title. And you know, I [sighs]— What are you gonna do? I created something; it's out there. People are using it. I can’t, it's not mine anymore. It's a weird thing to say, but [laughs] I mean, I appreciate the credit, though. I appreciate that I was the person that started that hashtag and that conversation.
Oops. Totally. Do we have time for one more, I guess? OK. Let's see. “So many of us don't have to get diagnosed and have to wait years for a diagnosis or diagnose ourselves. How can this problem be fixed? Is there a way that Medicare For All could include this and hold medical folks accountable?”
I don't know. Probably. [laughs] This is a area that’s kind of out of my expertise ‘cause I don't know too much about Medicare. I was fortunately on insurance under my parents while I was doing my diagnosis journey and then kind of hit that 26-year-old space where I no longer had insurance. And fortunately, it's so weird, the timing on that. I got my diagnosis, turned 26 like the next day. So [chuckles] I was like, OK, great. So I have to kinda go on a hospital hiatus, which I'm still on kind of. After getting diagnosed, I went to the ER for what they thought was either trigeminal neuralgia or could’ve been like TMJ. Who knows. I went for very excruciating facial pain that felt like someone had hit me across the temple with a baseball bat. Like it was just this echoing pain that I was, oohh, like a suicidal level of pain that they couldn't diagnose in the ER, even though I said, “Hey, I have Ehlers-Danlos. Please take that into account when you’re working on me.” They didn't know what it was! So nothing happened.
When it comes to diagnosis, that conversation, again, I'm very relaxed about it. I think self-diagnosis sometimes is absolutely necessary and absolutely valid. I very well could have self-diagnosed and might have been forced to, had I not had the fortune of getting my diagnosis before my insurance ran out. Because a diagnosis essentially is a way for you to communicate your needs and communicate what's going on in your body. And a doctor can be just as wrong about your diagnosis as you might be doing a self-diagnosis. I think that, in general, there's a lot of, you know, fear in regards to self-diagnosis, both from the person that’s doing it and from everybody else who hears the term “self-diagnosed.” They're like, “Oh, so it's fake. Oh, so you're lying.”
And I think one of the conversations I had, again, through the Internet, someone was like, “Oh, people self-diagnose when they say, ‘Oh, I'm so OCD because I like to organize things’.” And I had to kinda correct that and say, “That is appropriation of medical terminology. That’s not a self-diagnosis.” That is someone using medical terminology as a joke or as slang, so that’s appropriation of medical terminology. But that's not a self-diagnosis. A self-diagnosis comes from someone typically who’s done a lot of research and who may not have access to a “official” medical diagnosis, whether that's because they don't have the money to seek medical care that way, they don't have—they're too ill. I'm sorry, they're too ill to go to doctors every so often, and they might miss every appointment because they're too sick to get out of bed. There's so many reasons why we may not have access to that. So it's very important to me that the idea of self-diagnosis is more respected and treated with less judgment and cruelty.
And under that same umbrella, also, the other hashtag that I recently created was #AmbulatoryWheelchairUsersExist because people tend to freak out when I step out of my wheelchair [chuckles] because they've never seen that before. So there's a lot of things in regards to medical needs and disabilities that needs to kind of be debunked. And so whenever you catch yourself feeling those feelings, feeling prejudice against someone who might be self‑diagnosed or someone who is presenting a disability that you've never witnessed before, I say: come to it with open mind, open heart. Come to it with less criticism, less judgment, and more questions as opposed to assuming that someone is being malicious or faking or any of those things.
And I think that’s— Am I good on time? Is that good? Yeah. So we're gonna end it there. Thank you so much. Thank you.
Annie Segarra is a queer, Latinx, disabled and chronically ill content creator and intersectional activist. She runs a YouTube channel called "Annie Elainey" where she produces predominantly first-person video content on a variety of topics; sharing her personal narrative and opinions as well as creative content such as music, poetry, and short films.