Blind, Brave, and Unstoppable Gia Bernhardt

🎙️ At just 8 years old, Gia Bernhard was diagnosed with a rare genetic disorder that would eventually take her sight.

Today, she's an artist, advocate, and living example of resilience.

In this powerful episode, Gia shares how she navigated blindness, found purpose through creativity, and turned adversity into impact.

Her story will challenge, inspire, and remind you that even in life's darkest moments, hope remains.

Listen now. 💙

#TheResilienceFiles #ResilienceUnlocked #BlindnessAwareness #DisabilityAdvocate #Resilience

Transcript

SPEAKER_00 0:00

When you feel like life has dealt you a hand of unfair cards, instead of voting, you double down. Are you stuck in the game? You faced battles. You felt broken. But hey, do us a favor. Put your hand on your heart. You feel that? You're still here. Welcome to the Resilience Files Unlock, where survival meets transformation. Welcome back to the Resilience Files Podcast. I'm so excited to be here with you today. My name is Carrie Vernon, actress, stunt woman, and host. This space was created for honest conversations about healing. We know that the healing journey can be a lonely journey, but we're here to push you through because you're not doing it alone. You're right beside us, and we hope that you are inspired today by our phenomenal guests. Now, trigger warning for today's episode is discussions of disability, childhood experiences, and identity. As we say before, we are not therapists. We are not here to prescribe you anything. We're here to inspire you. We're survivors sharing stories. Our goal is to amplify voices, not to diagnose, to provide clinical advice. So take a moment for yourself if you need to today. As we do in Brazilience Files, we like to read our guest essays. And Gia has an incredible essay for you all today. Without further ado, we are gonna read Gia's story, and we will talk to Gia right afterwards. I threw a blurred lens. I remember being less than 10 years old, sitting in the ophthalmologist chair, heard pictures with no true meaning glowed on a backlit screen across the room. An ophthalmologist repeatedly asked me to identify the photos, which I clearly could not. I told him with all sincerity that I did not know what the pictures were multiple times. He began to sputter and grow angry, thinking that I was being ironic or obstinate. I wasn't. That was when my mother realized something was wrong. I visited specialists at Willis I Institute in Philadelphia. After extensive testing, I was diagnosed with a rare genetic disorder called enhanced S. Combs syndrome. I was legally blind. I had never minded being blind when left alone with myself. I'd always found a way to navigate and never thought much about what differentiated me from others. However, when I was with others at school or out in the public, the difference felt unbearable. I could not read the whiteboards or textbooks in school without using an iPad to enlarge everything. Before the iPad came out, I was given magnifying glasses and large sheets of paper within large font. The commission for the blind used to visit at school and take me from class to teach me bro. And while I was appreciative of their kindness and attentiveness, I was still overwhelming theirs. So I learned to adapt in quieter ways. I became very good at pretending, laughing when others laughed, nodding when something was being pointed out, and providing fake reactions so no one would notice when I couldn't see what they saw. Even now, there are moments where my instinct is still to pretend. I was happy to have several close friends, but aside from them, it often felt like the majority of students were kind to me out of pity and sympathy. I spent much of my childhood wishing that I was someone I was not, when in reality, who I was had always been enough. People always associate a childhood with joy and innocence. But for me, my childhood and adolescence were some of the most uncomfortable years. I hadn't yet learned that different did not mean lesson. As I grew older, I stopped caring about what other people thought of me. Or maybe I simply grew tired of trying to be like everyone else. I found comfort in acting classes, developed a love for classical piano, and used the arts as a means to escape the more unfortunate aspects of my life. The people I met in acting class were so kind and unusual in the most beautiful ways. I never felt othered among them. When I played piano, no one saw the work that went into my creative process, enlarging each note until I was able to memorize a piece. The arts gave me something priceless, a place where my differences did not feel like limitations, but part of the way I moved through the world. I carried that determination into my education. I refused to let my unconventional way of seeing prevent me from seceding academically. I used specialized monitors to enlarge exams and materials. And although it was still occasionally embarrassing, by high school, most people simply saw me as myself. I even grew comfortable among my classmates who, as younger children, had once laughed out of their own misunderstanding. Eventually, I pursued both a bachelor's and a master's degree in public health, even by a desire to advocate for those who felt unseenalized or believed their differences disqualify them from reaching their full potential. I even studied abroad with nothing more than Google Maps and hoped that I would find my way, just as I always had. I now rarely tell anyone about my legal blindness unless this naturally lends itself to a conversation. While it is only a small part of who I am today, it was a significant part of my life for many years and shaped me into the person I have become. When I think about the young girl I once was, I don't see someone broken. I see someone resilient, a child who was learning long before she realized it, how capable she truly was. I may not be able to see well, but I have come to understand that there is much more to life than merely saying. Gia. My goodness. Wow. Welcome to the Resilience File Podcast. I am so happy that you are here. Whoa, that was so heart-wrenching and cinematic and just intimate, and I can feel like it's a movie.

SPEAKER_01 5:41

And first off, how are you doing today? Hi, thank you so much for having me. I'm excited to be here. I'm doing well today. It's a little chilly out, but I am getting through the storm.

SPEAKER_00 5:50

So yeah, you're in the cold part of New York.

SPEAKER_01 5:54

Woo! Yes, chilly New York.

SPEAKER_00 5:56

Yes, girl. Wow. Well, I mean, your essay was so beautiful. And uh, I just really appreciate you just trusting us with that. The way you describe many things about learning to pretend and learning to adapt quietly to your situation, but not a situation, something you were blessed with. I mean, I feel like it's a blessing to have these like crazy superhero powers. That's what I'm gonna call it today, okay? Because blindness to some people might look as like, you know, not a superpower. I mean, we're gonna, of course, talk about the uncomfortable parts of being diagnosed with your blindness. But today, I wanna grant you, if you allow me to, but no pressure, that you were able to like have this unique thing that other people can't even experience. And as crazy as it sounds, like the world, most of the world may never understand what you've experienced, but then also you get to experience what most of the world never experienced, and you can't even explain it. It's gonna come back to me. But I just say in my eyes, I work on a lot of Marvel stuff. I feel like you're a superhero. And as I read your essay, I really feel like you're a superhero. I wanna go back into how you learn to adapt quietly and finding a home in the arts and like all of that. It's incredibly moving. I want to start at the beginning.

SPEAKER_01 7:12

Sure. So I guess to kick things off where it all started, um, when I was young, I really didn't have that well of an understanding of I guess what was going on. Um you would say. It started off like little things here and there. Like I noticed in the dark, like I couldn't get up the staircase, like when it was dark, because I'm night blind. So I would ask, you know, my parents to help me help me get up the stairs. I'm scared, I can't see. They're like, what do you mean? Like, are you scared like of the ghost or the monster? Like, you know, any other five-year-old. Like, you would assume they're scared of, you know, Bigfoot upstairs. But I was like, no, like I can't see to get up the staircase. Just little things like that, like not being able to see in class, like not being able to tell what time it was. So to me, that's kind of like how I was perceiving what was going on. And I guess probably to my parents, they were wondering, like, what is going on? Or my teachers, and that's kind of when like the red flag went up. Um, and yeah, I would say because my vision disorder is progressive, like it got worse over like from kindergarten to third grade. I remember it was just like a steep dive down. And yeah, so from there they kind of noticed, and then they they made me get some testing, they got me help, and they realized what it was, and then I kind of grew to understand from there. Um, yeah, just from hearing everything around me.

SPEAKER_00 8:25

Wow. Thank you for sharing that. So you um and when you say you're night blind, can you explain the difference for anybody that doesn't understand the world of blindness or um a sense of eyesight? What is the difference between completely blind, night blind, day blind? Sure.

SPEAKER_01 8:41

So um if you were to turn a light off in your room, um, I have heard that people could see where things are around the room. For me, it is just like if you were to close your eyes, it's pitch black. Um, so yeah, that's how I would explain it.

SPEAKER_00 8:53

Okay. Completely makes sense. How did it feel navigating school and the world that technically it wasn't built for blind people originally?

SPEAKER_01 9:05

It was difficult. I've adjusted a lot. Now I feel like I'm pretty used to it. But at first, I mean things like driving, I can't drive, reading signs like I was mentioning, menus, restaurants, things like that. And I are not super compatible, but thank God for the phone, like I'll just look up a menu ahead of time, or whoever I'm out with, like, I'll be like, read me, like, read me the menu like now. Like, you know, before I go up and order. But um, yeah, I mean there's definitely adjustments I've had to make. And like I said, when I was younger, it felt bigger than I think in reality, maybe it was, or I guess it is a big deal.

SPEAKER_00 9:36

No, it was it definitely was a big deal because let's be real, like when we go to school, like everything is definitely built for um, it's built to see, it's built to use, it's built to like in and when you can see, you're right, you are criticized because some one part of your essay you were like the doctor was like, No, like literally, like open your eyes, or like I'm being serious, and he's getting more angry with you thinking that you were jokingly playing, and in school, kids jokingly play about not being able to see or do this or that, but that was a true reality for you. And how would do you remember the conversation your parents had with your school or your teachers? Did they make things accessible for you?

SPEAKER_01 10:12

So, yes, and it took a lot to get there. So, in elementary school, I think the younger you are, the more willing people are to work with you because when you're little, it's cute. So, when I was little, it was cute, and I think it was more like, oh, the cute little blind girl needs to learn how to cross the street and you know, do the braille paperwork. As I got to high school, originally I went to a private high school, and they were like, Well, if you need an iPad, like we have an exclusive deal with another laptop company that doesn't make the font larger. So maybe this just isn't the environment for you. And unfortunately, I had to leave that high school. Yeah, which was kind of rude. But some people not as accommodating. As you get older, people are less willing to work with you, and that's kind of I think where I learned to put my foot down and be like, this is actually what's gonna happen. You're kind of just gonna agree with me, or else, you know what I mean.

SPEAKER_00 11:03

Yeah, absolutely. And yeah, shame on that school. Education is for everyone, it doesn't matter like what limitations, abilities, disabilities, whatever you have. Shame on that school, and I hope they got their stuff together now because that's wrong. How did it also feel navigating like your friendships at the time, like letting people know, or did you keep it a secret?

SPEAKER_01 11:21

So I actually found as I got older, I kept it a secret a lot more. When I was younger, because everyone I was in school with saw me using all like this adaptive technology and having like the special teachers come in. Like I think everyone knew, like it was impossible to keep it a secret. Now I think because I adapted more like on my own, and I don't have like, you know, a casting crew of people coming to help me anymore, it's easier for me to keep like low-key unless it comes up in conversation, which I'm totally comfortable with at this point.

SPEAKER_00 11:49

For the kid that may be listening today, and they may be like having a new diagnosis of finding out that they're blind or, you know, some type of limitation or disability while they're navigating school. Do you have any advice for that kid? Or how did you feel like you adapted over time? I know you said it was you didn't tell people more like in high school. Did you just tell them out of not wanting to be singled out, or did you just wanted people to really just get to know you as the person you were besides your limitation at that moment?

SPEAKER_01 12:19

So that's what I think it is. It's more of when people hear that you have a disability or something a little different. I don't think it's intentional. I try to give people the benefit of the doubt, but they kind of other you like in their mind. Like they'll put you in a box, like, oh, like the disabled person. And then whenever you achieve something, it's like, wow, look what they did, like despite blah, blah, blah. And I always hated that. Like, I just wanted to achieve things on my own and be like, oh wow, she did that because she's smart, or she did that because she worked hard. Like, I didn't want it to be because I was blind and look what I did. Like, yeah, because I do think, you know, aside from some slight differences, we are still all humans, and I I think it's a little ridiculous. Like, I know I guess there's a difference in the way I went about it, but I still achieved something just like anyone else would.

SPEAKER_00 13:04

Yeah.

SPEAKER_01 13:04

So I almost hated being like coddled in a way.

SPEAKER_00 13:07

100%. That makes completely complete sense. And that's a good um good point to make for people that are listening today. You know, acknowledge people for the work that they've done, despite their limitations, abilities, and abilities, disabilities, whatever it is, that they've done the hard work because they are actually smart, because they actually did the work, and we shouldn't discount anyone based on anything. I appreciate that you said that. You all talked about pretending a lot, laughing, nodding, blending in. When did you realize that that has become something that you were using as a masking mechanism? Oh, I mean, honestly, I still do it today.

SPEAKER_01 13:45

If someone were to show me something on their phone, and let's say it's just a very like low effort conversation, or like just look at this like TikTok I saw, and this is where I notice it happening most. Just like if I see them laughing, I'll just laugh along with it. I have no idea what the heck is going on. But I'm just like, oh my god, like you know, ha ha. And um, yeah, usually it works. I mean, I've never had anyone question it. Um, but I 10 times out of 10 never know what's on that screen, unless it's like really like one of my best friends. And I'm like, give me that phone, and I'm like zooming in on it. But yeah, like casually out with like friends I see once in a while or something. I'll just I'll I let it slide, which you know.

SPEAKER_00 14:21

Wow, yeah, that's so interesting. It actually makes a point too, even for these apps to be more accessible. How could an app be more accessible for a person that is blind? Like what capabilities would help you?

SPEAKER_01 14:33

What I would love to see from TikTok and Instagram is an accessibility feature where you can make other people's captions bigger, or like on TikTok, if the font of a video, let's say, is smaller. You know how they have translations like for different languages? I would love if they could just make it like in the same language but larger. Um, so just an idea. But yeah, whatever. I love that.

SPEAKER_00 14:54

Hey girl, look, you might be having a side job right now. You could um start doing accessibility services for some of these apps. I need to, I'm gonna advocate for you myself, but they definitely need more different communities to talk about this. TikTok and Instagram, if you're listening, this is for you. YouTube as well. So let's get into you started acting and the playing the piano, it became your sanctuary. Why do you think art felt safe for you in your everyday life?

SPEAKER_01 15:22

I think art felt safe for me mostly because the people that I was around made it a very comfortable space for me. My piano teacher growing up, I had him for over like a decade. Um, and he knew my situation. He never made me feel bad about it. Um, if my playing was bad, it was bad, and he just told me how it was, and I really appreciated that. Um with my acting. And I think a part of the arts that as a blind person I really appreciate is that I have the opportunity to rehearse, and the final product doesn't look any different, if that makes sense. Yes. There's something to that that I really appreciate because you can't tell the difference once everything's said and done.

SPEAKER_00 15:59

Yeah, I love that. You mentioned something with your piano teacher not having, you know, not limiting you to your disability, and they were very much like if you like you said, if you suck, you sucked, if you were good, you were good. Um question for you would be do you feel that it is necessary or do you feel that it's a um what is the word? Is it a setback for people to allow someone with a disability such as blindness, you know, a little bit more time or a crutch to lean on while navigating their disability and exploring something new like that?

SPEAKER_01 16:36

No, I think that everybody deserves to have leniency and especially depending on the disability, I think that people learn and adapt differently. So the way that I was able to play piano was a lot by listening and just repeating what I've heard. But let's say if someone doesn't have that skill or they're more visual and they can't hear as well, then I think things would definitely have to be adjusted. But once I had my my system down, I guess, then at that point, I feel like if you have kind of your flow and you know, you know, how you're gonna go about learning things, then I think it's fair game at that point. But to get to that point's a different story.

SPEAKER_00 17:08

I love that. Wow. Thank you for sharing that. What do you think creativity gave you that it other people couldn't give?

SPEAKER_01 17:14

That's a good one. Something creativity gave me that other people couldn't give me. Honestly, just freedom of thought and expression. I think for me, it's a lot easier to I know I'm talking a lot now, but it's a lot easier for me to communicate um through music and I think through like art more than it is like to just be up front and say things sometimes. So I do appreciate like, you know, a way of freedom of expression. It's nice.

SPEAKER_00 17:39

I love that. I want to shift into identity. When did you stop seeing yourself as different?

SPEAKER_01 17:44

Probably late middle school years to high school years, I really stopped caring. And I don't know if I totally ever saw myself as completely not different. Like fundamentally, I realized, okay, I think I'm like really emphasizing way too much on this one aspect of my life. Like, I need to not move on from it, but in a way, sort of like move past this and like you know, time to time to snap out of it.

SPEAKER_00 18:07

Um what do you think at that time during middle school? What helped you reclaim your sense of worth and identity?

SPEAKER_01 18:14

I'm not quite sure. Um I think I just found a lot of personal hobbies and interests. Like I was starting to enjoy school more as I was getting used to adapting with the way I saw things. So maybe there was a relationship between me almost having practiced like how to work around the environment and stuff, like not being able to see, and then gaining confidence. I wouldn't be surprised if that's what it was, but I never quite put my finger on it.

SPEAKER_00 18:38

Well, I think like even you lose yourself in things that you love and you really truly find yourself and then the things that are strengths. You know how some people say when you lose one sense of sight, then your hearing increases, or if you lose hearing, then your taste touch increases. Did that happen for you?

SPEAKER_01 18:56

Yes, I'm literally I'm laughing because I was the second you said about the sense, I was gonna say my hearing is insane, people tell me compared to the way that I see. I could hear my parents like when they're around, like from down the block when I was little, I'd be like, like, are you talking about me? Like I'd be in my room and they were like downstairs in the kitchen. I'm like, who are you on the phone with? Like, what are you saying about me? And they're like, How do you know? Like, what we're saying. They're like, Stop eavesdropping. So, yes.

SPEAKER_00 19:23

I love that. That's so funny. Um, you talked about advocac advocacy and purpose and where you are now. I think you chose public health, right?

SPEAKER_01 19:32

Yeah, I didn't.

SPEAKER_00 19:32

Why public health? I love public health.

SPEAKER_01 19:35

I think there's a lot of different things that you could do with it, and specifically advocacy. My focus was global health. So it's looking at a lot of different, you know, like resources, like where like what we could do to help different areas, like specific needs. Like, I guess, for example, a lot of the work I've done is in mental health. So the majority, the bulk of my work in graduate school was global mental health. So that's really what I did. I focused on in my time.

SPEAKER_00 20:00

As you are navigating public health, has have you been able to advocate or help with any of the initiatives around like increasing accessibility for people that are blind?

SPEAKER_01 20:09

So, not blindness specifically. I have not had the opportunity to work with any other disabled people. I actually have not even met another blind person in my life. But fingers crossed, one day it will happen. Um I've worked a lot with um domestic violence, women experiencing like homeless list, uh homelessness that need to go to shelters. I was volunteering for a shelter for a bit. Yeah, I worked um global mental health in Nepal. I did some outreach for them. I did like um a course adaptation because they have a lot of like stigma around there. So just different things in mental health, but never specifically disability, although I would love to do that one day.

SPEAKER_00 20:45

And one of the questions I meant to ask at the beginning, because I know a lot of people will like message and ask this later, were your family, was anyone in your family fine as well?

SPEAKER_01 20:54

No. So my parents both have they're both like carriers for the disease. Um, and I guess it was a perfect storm, so I I have it now. But before them having like the carrier gene, I don't think anyone else actually had this specific disorder. Okay.

SPEAKER_00 21:10

And do you have any children now? No, I don't. Just a dog. That's a kid too, girl. Um a soft, nice, cuddly kid. Um, I love that. And if you could talk to younger Gia right now, what would you tell her?

SPEAKER_01 21:25

I would tell her honestly, just not to care anymore. Um, I know it's kind of blunt, but I think that's probably what I needed at the time. Yeah. I think if I would have gotten out of my head and would have just learned to enjoy, despite, you know, I mean, the truth is that to me this felt very big. And in a way it was, but so many people have their own things going on in life. Like, I think when you're little, you don't realize like you're not the only one that's going through something. Like you need to just take a deep breath and kind of like let it let it be. So that's the advice I would give myself.

SPEAKER_00 21:58

So sweet, younger Gia. I am so, I'm so proud of you about your courage. I'm proud of you for pushing through. I'm proud of you for not only just you accepted, you know, the diagnosis, but you decided to not let it limit you who have done the arts and piano and finding places to be. If someone's listening today that feels invisible or they feel different or they feel like their blindness is limiting them, what would you say to them?

SPEAKER_01 22:23

Don't. There's always somewhere out someone out there. Like I met you through a call and then I ended up on a podcast. There's always someone that's willing to listen. Turns out there's a lot of people that are willing to listen that I never knew. And to anyone else out there, I'm willing to listen. And there's definitely more people that are too. So never feel that way.

SPEAKER_00 22:41

I love that. Gia, how can we follow up with you if people are interested in following your journey and your arts and you playing the piano and your public health work? What is the best way of staying in contact?

SPEAKER_01 22:52

Sure. So you could reach out to me on Instagram. It's Gia.burnhart, my first and last name. Or you could also find my YouTube channel. I believe it's Chow, it's Gia. Those are all my old piano videos from when I was little. So have fun with that. But Instagram would be the most direct way.

SPEAKER_00 23:06

Gia, you're amazing. Your story matters. Thank you so much for trusting us with it. And I'm sure it's going to definitely help someone that's listening today. So if you're here listening today, I hope that you are inspired by Gia's story. Hello, Gia. Watch your play piano on YouTube or even just follow her along on her journey. And this has been the Resilience Fouse Podcast Unlocked. If you need some love today, we're sending you love. If you need a hug today, we send you a virtual hug. I hope this episode moved you and inspired you. And stay tuned for the next episode. Thank you so much.