I’m Disabled & I Refuse To Be Your Inspiration

Wendy Lu

One in four adults in the U.S. are living with a disability, but you wouldn’t know it given the lack of representation in the workforce, Hollywood, and media coverage. On the 30th anniversary of the Americans With Disabilities Act, Voices of Disability celebrates the real stories — not the stigmas or stereotypes — of this dynamic and vibrant community of individuals.

Jillian Mercado knows all too well what it feels like to be the only disabled Latinx person in the room.

The 33-year-old has worked with big brands like Nordstrom, Target and Diesel, and Beyoncé — yes, Beyoncé — recruited her to be part of her “Formation” merchandise campaign in 2016. Headlines about Mercado’s collaborations often heavily highlight the fact that she is an actor and fashion model who is also a wheelchair user, but to Mercado, that shouldn’t be the focus. It’s a crucial part of her identity, but it doesn’t solely define her. “We should be asking ourselves why disability continues to even be a factor,” Mercado says. “I’m honored to be one of the first to reach this level, but the number of layers of systematic stereotypes I had to climb to get here should be concerning.”

Three decades after the passage of the Americans With Disabilities Act (ADA), which effectively banned discrimination based on disability, people with disabilities still face significant barriers to equality — not because of their disability, but because of stigma around it. Despite the fact that the ADA prevents employers from making ableist hiring decisions, disabled people are much more likely to be unemployed than non-disabled people. And even though nearly a quarter of the U.S. population identifies as being disabled, only about 10 percent of characters with disabilities on TV are played by actually disabled actors.

“The way disability is portrayed in the media can very much be disheartening and not how I see the disability community,” says Mercado, who plays an immigration attorney in “The L Word: Generation Q.” “Obviously I’m part of it, but I just know that the way that representation has been for people with disabilities isn’t in the best light, sometimes quite literally.”

Mercado is working to change this — both in front of and behind the camera. Last week, she launched an online database called Black Disabled Creatives to help match companies with artists who are looking for work or want to showcase their talents. To celebrate the 30th anniversary of the ADA, Mercado curated this photoshoot featuring a podcast producer, an actor, a travel blogger, and an entrepreneur, among several others.

“We have a long way to go so we can have equal opportunity in the way we’re represented, but we have to start from somewhere,” says Mercado, who wanted to highlight individuals with a range of visible and invisible disabilities as well as passions. “It’s the little things that help along the way.”

Below, seven people with disabilities share a glimpse into their everyday lives and talk about everything from the challenges of being the only disabled BIPOC in the room to why they’re tired of being called an “inspiration.”

The following interviews were edited for length and clarity.

Brandy Lewis, 28, writer and dancer 

“When I was having health problems but I wasn’t using any mobility aids, I was challenged frequently on the legitimacy of my illnesses or my disabilities. In 2019, there was a hashtag, #DisabledPeopleAreHot. I posted a photo of me in a wheelchair doing a wheelie with a leg up. It blew up, but a lot of the people who were commenting were saying, ‘You’re not disabled! How come your legs work?’ I had to make another post saying, ‘Not everybody who’s in a wheelchair is paralyzed.’ Ambulatory wheelchair users exist. I witness that numerous times. If there’s no way for my wheelchair to get through a bathroom, I sometimes use a crutch. I’m used to seeing everybody’s eyes get wide and they start whispering because they think it’s a miracle. 

“What gives me hope is seeing people on social media who are starting to speak out for issues that affect other people. I feel like it’s becoming a normalization of not [being aware of something], and then educating yourself. So many times, people only know their surroundings, and once you start reading books and looking for different sources to get this knowledge, and working in your community and listening and sharing, that’s when we can have actual change. That gives me hope. I’m like, Okay, we’re making small strides. Once you focus on all the little things that are happening now, when you look back, you can see this massive accumulation of all these other victories instead of just focusing on one.”

Misty Diaz, 31, adaptive athlete 

“I went to New York last year for three weeks to work. My girlfriend lives in New York, so I invited her to dinner. I picked the restaurant. She’s in a wheelchair, I’m in crutches and can walk up and down stairs, no problem. We get to the restaurant and because it’s an older restaurant, there’s two steps. Two! They don’t have a ramp. They don’t even have a rollout ramp. It took us at least an hour to find another restaurant — if anybody knows New York, it’s not someplace where you can just hop in a cab. You’ve got to find an accessible cab.

“Because of my close friends that I do go out with, I’ve verbally spoken up about my needs in regards to my disability. And by speaking up, they know that when I go out with them, they have to consider, Okay, does this restaurant have high seats? Is this accessible? How’s the parking? As anybody knows, parking in Los Angeles — sometimes you have to park far. By allowing my immediate circle to know that this is what helps me and this is what allows me to be able to enjoy going out with them, if those options aren’t available, they speak up. They stick up for me because they know, one, how hard it is already, and two, they want me to go out with them. They don’t want it to be difficult. Sometimes they’ll run their plans by me and they’ll be like, ‘Oh, we looked at this restaurant, the parking was really bad.’ Speaking up and letting them know your needs [is important].”

Lyric Mariah, 24, model 

“One time, me and my friend went to apply for a waitress job. I had just worked at a restaurant and I’m really good at balancing on my hands. We go in and I ace everything when it came to the interview and all that. My friend did, too. But then, at the end of it, they had me come into this room and they asked me if I had carried a tray. I said, ‘Yeah.’ I’m thinking it’s just part of a protocol, that they’re going to call my friend in next to try and do this, and they did not. I was like, Oh, you guys just did that because I don’t have a hand and you wanted to see if I could carry stuff. We get the short end of the stick all the time. They give us the easy jobs when we do get hired. They just want to make sure they don’t get a lawsuit. I’m more than you not getting a dang lawsuit. I’m not gonna sue you, I just don’t want to be treated like I need to be babysat. That’s if we even get in the door…

“I’ve always thought that being a Black woman first saved me. It really helped me deal with my body, my limb difference. The examples we have in history, it’s the Black women who… damn, they overcome so much. The most inhumane freaking things you can imagine. I think about moms with children getting shot who stand up in court and tell the murderer, ‘I forgive you.’ That’s the type of strength that really helped carry me, unconsciously. I’m the product of that strength from my ancestors. When it was time for me to put in the work, I didn’t know where I got that energy from, but I just feel like it’s that Black woman mentality. You can’t let it get you, you’ve got to keep going. There’s gonna be a million things in my lifetime that try and stop me because of my skin tone.”

Danny J. Gomez, 37, actor

“When I first started going out in my wheelchair, I felt really ignored and overlooked. That’d never happened before. Before that, I was a bartender, always around people, and the life of the party. Cut to being a person in a wheelchair, and people were not even looking me in the eye. It really hurt me as a person. They’d look at me with pity, you know what I mean? I’m in a predominantly Hispanic community. Especially the women, they look at me weird like, ‘Why is this guy in a chair? He’s so cute.’ I think that’s part of people not being educated. When little kids see me, they stand around me and say, ‘Oh, that’s cool.’ Kids are always more open about things. 

“When I was acting able-bodied, I wasn’t Hispanic enough or I was too whitewashed. Now I’m dealing with that as a disabled actor and being Hispanic. I didn’t think I would run into this after my accident. I’ve noticed that the [disabled] white guy or white girl is cast more often than the Black girl or the Spanish guy. A friend of mine keeps booking roles over and over, and I wondered if it was because he is white. He looks like the everyday next-door guy with blonde hair and blue eyes. I wondered, Is that why I’m not being cast? Cause I know I’m good. It’s interesting. It’s easier for the public eye to digest a white person in a wheelchair.

“When I went to New York, I was filming a show from NBC called ‘New Amsterdam.’ It was my first guest starring role. I got flown up to New York and they set us up and my sister came with me. We were in Williamsburg, and a lot of those buildings weren’t ADA-complaint. I didn’t know what that meant; it was just a place I couldn’t get in. But when I really learned about the history of the ADA and I watched the documentary ‘Crip Camp,’ it gave me a new sense of pride for being in the community because of how hard those people fought for our rights. Without them, we wouldn’t have a voice — we’d just have to deal with it. That really opened my eyes to how big these things are and how important they are. We’re still fighting today. This anniversary, I feel like people need to learn and see the things that we go through.”

Natalie Trevonne, 29, actor and co-host of the Fashionably Tardy podcast

“Sometimes when I go to auditions, I’m the only Black blind woman. If I do see other blind people, they’re usually Caucasian and they’re usually male. How do I fit in a space that wasn’t really built for me? How much do I speak out? How much noise do I make? Before, they gave us the impression that we should be grateful to be in the room. Now, I’m coming to the point where I’m like, I’m not just going to be grateful I got invited to your party. I got invited to your party, but nobody talked to me, nobody asked me to dance. No longer are we sitting down and saying, ‘Oh, well thank you!’ No. It’s a new day, and it’s time for us to start shaking things up and saying, ‘Hi, my name is Natalie. Get to know me because I’m not going anywhere.’ I don’t want to be quiet anymore. I want equal representation all around. It’s time. 

“People when they meet you, they expect you to tell them how you lost your vision and want to know your whole story; they would never do that to somebody else. That’s so personal, and for some people, you might be asking them to relive their trauma. People want to pick your brain about something very personal and want to be like, ‘Oh, that’s such an inspiration,’ but no, you just met that person. I also think that word, ‘inspiration,’ is really used incorrectly when it comes to people with disabilities. I was once taking the train from my house to West L.A. for an acting intensive for blind actors. I remember someone being like, ‘Oh, you’re such an inspiration. I can’t believe you’re taking the train by yourself, you’re so brave.’ I was like, No it’s not. It’s something we all do. If I never leave my house, what would get done? We’re doing the same thing you are. Let’s be inspiring for something really great, not something as simple as walking outside my house. It’s a word that gets thrown around too loosely to describe the disability community and it shouldn’t come as a surprise to you when we’re just living our lives.”

Stacey Valle, 30, travel blogger

“Travel — it’s how I live. I am benefited enough to be able to travel. It’s part of my life, and always what I wanted to do. I wanted to see what is out there. What are the cultures? What are the languages? What are the colors? The photography, the landscape, the pictures — what is it all? And I wanted to connect with different Deaf people as well. What are their experiences? We can’t communicate — their sign languages are so vastly different from mine; every culture, every spoken language has an equivalent manual communication. So, we use universal gestures. It’s not a real language, but it’s more of a visual communication. We pick what’s common in our languages and use that as a basis to play charades to get through conversation.

“Growing up, I would think about what it would be like if I was not Deaf. And then what would I do? That was usually when I was frustrated. I was hitting communication barriers, I was isolated in the family, and the hearing society in general was confusing. But I have in me an identity, and if I took that magic pill [to make myself become a hearing person], I would lose it. I would feel lost. It’s a big part of who I am and how I view life. My travels, my views, my future goals are all based on my identity as who I am.”

Jillian Mercado, 33, model and actor

“In my whole life, I always felt like I’m the only disabled person on this planet. Going to the grocery store, I was the only one. Going to school, I was the only one. There weren’t many chances for me to interact with someone who had a visible disability to feel like I wasn’t an outsider or an alien. I wish there was more representation back then in the things I would visually see or interact with so I could feel like I wasn’t alone. I grew up in an era where I had my first computer when I was 15; the only thing the computer had was AOL and the game Snake. Even having the internet, there was still no representation, not even in politics. Subconsciously, it was harmful for me because it was a constant reminder of all the stereotypes I was hearing about people with disabilities — that I’m not worthy, that I’m not able to fulfill my career dreams. We’ve been here since the beginning of time, yet we’re still overlooked and underrepresented.

“I think it’s important to know how deeply rooted the underrepresentation and ableism can be. It can affect someone’s upbringing so much that they don’t feel like they’re worthy of being alive. It’s a privilege to say, but I’m thankful I had a very strong family that always made me feel included. If I had trouble or worries, they were there to give me time to express myself. If I felt depressed, they would just cry with me. I know a lot of people with disabilities feel like they’re not being heard or loved in the same way as their counterpart friends or family members, so they feel alienated and it goes to a very dark place. I can say I’ve been there and it’s not a fun place to be at all. I’m very blessed and lucky to say I was able to see the light and see my value.”

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Voices of Disability is edited by Kelly Dawson, a disability advocate who was born with cerebral palsy. She has spoken about her disability on the popular podcast Call Your Girlfriend, and written on the subject for Vox, AFAR, Gay Mag, and more. Find her work at kellymdawson.com

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