Using Social Media to Advocate for Others | Stephanie Renberg

Welcome to My Hero 360! In this thoughtful interview, Jillian Comstock sits down with Stephanie Renberg, a digital content creator who is using her voice and platform to educate and inform others about blindness and other disabilities. Stephanie turned her passion for theater into a social media movement with her engaging and informative content.

Key Highlights:

• Hear how Stephanie Renberg gained inspiration from others on BlindTok to launch her own social media presence.
• Learn how Stephanie advocated for herself and her needs growing up with a progressive vision condition.
• Hear Stephanie challenge the stigmas associated with disabilities.
• Be inspired by Stephanie’s resilience and advocacy efforts.

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Transcript:

Jillian Comstock:

Hello, everyone. Welcome to My Hero 360. We are a story-sharing platform dedicated to sharing the stories of unsung heroes from around the world. Together, we can empower each other and improve quality of life one story at a time. My name is Jill, and today, we have a truly special episode lined up.

We’re diving into the incredible journey of a remarkable individual whose story is nothing short of inspiring. Today, I have the immense pleasure of welcoming Stephanie Renberg to the platform. Stephanie, thank you so much for joining us today. I’m thrilled to have the chance to talk with you and share your story with our audience. It’s truly an honor. To kick things off, could you please just introduce yourself to our listeners? Tell us a little bit about your background.

Stephanie Renberg:

Sure, thanks. That was quite the introduction. Like you said, I’m Stephanie Renberg. I am a partially blind digital creator, content creator, whatever you would like to call that, on social media. I educate and spread awareness about blindness and disabilities in general. In my own life, I’m currently pursuing dreams of being an actress and then also of singing, so that’s my life wrapped up. I guess I’ll say I have a rare genetic disorder called Stargardt’s disease. That is my form of blindness.

Jillian Comstock:

Awesome, thank you. Let’s just jump right in then. You already leaned into that. You’ve built a powerful personal brand on social media using your platform to educate about blindness and raise awareness about disabilities. What inspired you to start this journey?

Stephanie Renberg:

I accidentally fell into it, to be honest. I, from a young age, have really liked performing. I started performing in musicals and plays when I was only about 8 or 9. I was actually living in Turkey at the time. My dad was in the military, so we were living in the capital of Turkey. I started doing theater, and that’s actually right when I started losing my vision coincidentally. But growing up, we didn’t really live in a place that was conducive for acting or for singing. I never grew up in Los Angeles or New York City, stuff like that, so then when I was in college, I linked up with this music producer, and he really turned me onto the idea of social media and how important it was to create your brand and build up your following on there. I started my pages and they weren’t really about anything at first because I myself wasn’t really on social media.

When I was in middle school, high school, I was on Facebook because that’s about when Facebook became a thing, became popular, but I had my own Instagram, a personal account. I didn’t even have a TikTok, but I started posting and it was just literally photos of me and what I’m doing in my life, basically what a personal social media would look like. I was just doing that because I didn’t know what I was doing. I was spending every single day watching YouTube videos on how to grow channels, what you should do, what your niche should be, kind of things like that. One day, I just decided, it might be fun if I do a little video on how I use my iPhone as somebody who’s visually impaired. I did that video and it got 5 times as much engagement as anything else I’d ever posted. Obviously, people were very interested, which makes sense because people don’t really know about assistive technology. How many people own an iPhone and actually know all of the accessibility functionality built into the phone? Nobody. Unless you have to actually use it yourself.

I started making more content like that. It didn’t immediately become everything I was posting about, but slowly, over time, I was just posting more and more content about blindness because it was so niche. It was so unique that people really found interest in it, and that’s when my platforms really took off. For the past couple years, I’ve primarily focused on blindness education and disability awareness. Only now am I starting to branch out into more blogging and doing things about other trending topics like makeup, and fashion, and things like that. I’m branching out a little bit now that I know what I’m doing. I certainly didn’t know what I was doing for years, but that’s how the journey began and I guess where it is now.

Jillian Comstock:

It’s evident that your work certainly paid off. I’ve done quite a bit of research on you. Let me just say, the content you create certainly stands out.

Stephanie Renberg:

Thank you.

Jillian Comstock:

Your sense of humor shines through, and I love how you turn your experiences as a low-vision person into something both funny and entertaining while keeping it also educational. It’s evident that your unique perspective and approach have resonated with many people. With that in mind, I’d love to hear more about how you’ve navigated the changes in your vision over time. How did you navigate that?

Stephanie Renberg:

Yeah, that’s really difficult, honestly. I didn’t have a lot of help. Some people who have, especially genetic disorders, multiple people in their family and even for multiple generations, have had visual impairment. For me, it was just totally brand new to my family. Absolutely, it’s a recessive gene. It’s very rare that both parents have it. Even though both of my parents have it, there was still only a 25% chance that I would have the gene become active, actually appear, so my family didn’t really do much. They didn’t know what to do with me. We have a very strong academic background in my family, so it actually almost made it harder for people to tell that I didn’t know what I was doing, because I was very good at pulling it off, that I knew what was going on even though I didn’t.

Navigating the vision loss, when you’re in school, you have vision specialists assigned to you, so they provide you with assistive technology. I just very slowly, for many years, I was just working with what I was given. Only by the end of high school and in college did I get to the point where what I was given wasn’t enough and I had to start really looking outward and figuring stuff out for myself, and then honestly, eventually getting on TikTok. TikTok has their own little, I don’t know, pieces of TikTok, which are these BlindTok, like MakeUpTok, FashionTok, whatever. I was on BlindTok. I learned a lot from that, which I could talk about more later on, but that was actually very eye-opening. But I’m still working on it because progressive vision and loss is so difficult in that it’s not just one and done. So many people overnight, they get a different … They’re just like they can see and then they can’t see.

For me, it was like, I can see, but I can’t see the board. I can see, but now I can’t see the board and I can’t see what I’m reading, so now I need handheld magnifiers. Now, handheld magnifiers aren’t strong enough. I need an electronic magnifier. Now, I’ve gotten to the point where I do use screen magnification, but it’s too much for me to read with my own eyes. That’s just too slow and absolutely way too draining. It’s just not feasible. Now, when I read things, I pretty much always listen. Unless it’s just a few words, I’m always listening to things, so I’m just upgrading. I like to call it the evolution of blindness, evolution of my assistive technology. It’s still evolving and I have to figure out for myself when I want to level up. It’s a personal decision. It’s hard to not be stubborn because it’s difficult to learn a whole new form of technology.

Jillian Comstock:

Sure. It seems like it’s constantly evolving, and that’s hard to keep up with, I can imagine. It’s one thing to lose your vision. It’s a whole other thing when you don’t have that support that you needed to go through that. But like you said, social media, I think, has been so much help to so many to help garner support for people going through an experience such as yourself. Since building your personal brand, what are some common misconceptions about blindness and visual impairments that you encounter? How do you address them through your advocacy and daily interactions?

Stephanie Renberg:

I really try to get people to understand the myths and the misconceptions. There are so many. There’s pretty much only misconceptions about blindness, I would have to say, because how much does the average person know about blindness? Literally nothing. I’d say one big misconception is people have no idea what legally blind means. In blindness, you have a lot of different terms, because blindness, here’s our key phrase, blindness is a spectrum. That spectrum starts at legally blind, which is 20/200, and then goes just down the line. I’m around 20/800, something like that. I could explain what that means, but I won’t. But anyway, so legally blind means that you have 20/200 vision or worse with glasses, with corrective lenses. That’s the biggest misconception there. Everyone’s like, “Oh my gosh. Yeah, I’m actually legally blind without my glasses,” and you’re just sitting there like, “That’s literally not…”

Jillian Comstock:

You’re like, “Actually, that’s not what that means.”

Stephanie Renberg:

Yeah. You’re like, “No. If your vision is correctable with glasses, then you’re not legally blind.” When you say you’re visually impaired, people think that just means you need glasses. When you say you’re legally blind, people just think that means glasses. People literally don’t know there is a difference between being able to have glasses and being completely blind. Nobody understands there is a spectrum, so what’s so difficult for blind people is we go out in public and when it comes to just everyday interactions or even interactions with people working in stores, because they don’t understand this, they will … Some people really get angry. They think you’re lying to them or something. I don’t know why they’re in your business anyway, but they’ll be like, “What are you talking about? Just get glasses. What is wrong with you?”

I have a friend on social media who recently was turned away from a restaurant with his guide dog, and he is actually much closer to fully blind than I am. He has retinitis pigmentosa. But with retinitis pigmentosa, you still have a tiny bit of vision in the middle, which is your essential vision, which is what you use to look at things. He was literally turned away from a restaurant because the guy thought he was lying about being blind just because he was able to look in the direction of the person. He was like, “How are you looking at me right now? You’re totally lying. Get out of the restaurant.”

Unfortunately, that’s what happens with disabilities recently. Disney World and Disneyland just made huge alterations to their program for people with disabilities because so many people were lying about being disabled, that too many people were using the program that shouldn’t be using the program and so now disabled people who are actually disabled don’t get to use the program. In the beginning, I made a lot of videos that were like 3 myths about blindness, and it was a lot of blindness is spectrum-oriented. What are some other ones? Big misconceptions, just weird misconceptions. A big misconception with all disabilities is that we’re just lazy, which makes me laugh because I’m like the definition of being disabled is that we have difficulty performing tasks. By definition, we have to work harder than the average person to get the same thing done, so I don’t really know why people think that’s lazy. You think because it takes me longer that I’m lazy?

Jillian Comstock:

They’re not seeing it from your perspective. They’re just seeing their own perspective. I think it’s one of those things too, where it’s like if you’re not in it, you don’t even understand it. People are just looking from the outside in versus putting themselves in your shoes and trying to understand how that might feel or be like.

Stephanie Renberg:

Very limited self-awareness on their end.

Jillian Comstock:

Yes, that’s what I was trying to get at. Yes, that’s the word.

Stephanie Renberg:

Laziness and then, unfortunately, also just stupidity or lack of intelligence is a big stereotype. One big other stereotype, will be my last one, is that all blind people use a white cane or a guide dog. The statistic in the U.S. is only between 3% and 8% of people in the blind community use a white cane or a guide dog. It’s very low. Less than 10% of us use a white cane or a guide dog, and that is because blindness is a spectrum. An additional statistic is that over 90% of people in the blind community, and again, that’s people who have legally blind or worse, 20/200 with glasses or worse, over 90% of us still can see something, so almost every single person who is considered legally medically blind still has some vision.

Jillian Comstock:

Right. Moving forward, your Instagram segment, Things That School Made Me Do Even Though I’m Blind, sheds a light on the shortcomings in the education system for students with low vision. Can you share your personal experiences navigating school as a low-vision student and discuss the critical changes you believe are necessary in the education system to better support students with low vision?

Stephanie Renberg:

Sure. First, I want to just point out that the ADA, the Americans with Disabilities Act, which is basically the only legal precedent that allows disabled people to function in society right now, that was established in 1990.

Jillian Comstock:

That’s not too long ago.

Stephanie Renberg:

That is not long, I know. We all know people who were born before 1990, so before I go on about everything that’s wrong with the education system, let’s just point out the fact that disabled people have not been able to be in society and in school for that long. Sure, I know people back then were accommodated, but a lot of times, and I’ve talked to obviously a lot of blind and low-vision people of all ages, a lot of times, unfortunately, it has to do with where you live. If you live in a … For example, I did most of my education in Northern Virginia, and Northern Virginia has some of the wealthiest counties in all of the United States, so what I was experiencing was pretty high-end in terms of what people with disabilities in general experience. I have talked to people who live in, well, not where I lived, and they did not have the same experience.

It really depends where you live. I would assume how much of your county’s taxes are going toward your school programs, things like that. Mine wasn’t horrible, but there are obviously things that need to be done. I feel like, for one, the biggest thing I would like for all kids to know is that they have a choice when it comes to their accommodations. I was literally never told that. I didn’t figure that out until college. I just thought whatever they told me I was going to get, I was going to get and that’s it. I have to tell a lot of kids that that’s not the case. Also, students are … They’re kids and they don’t understand the law yet. They don’t understand the Americans with Disabilities Act. I have one girl I talk to a lot who’s … They’re a middle schooler. I think she’s in high school by now, and she has kids peeling off the Braille that’s labeling classroom numbers for her because kids just don’t really know better. If they do, they’re just being not nice.

I had to point out to her, I’m like, “Well, it’s your school’s obligation, legal obligation, to put the Braille back up immediately. They need to have an accessible space for you.” She had no idea that was even the law. She just wasn’t doing anything about it. She has very low vision. She uses a white cane, so she actually … For me, when I was in school, I could still see the numbers for the most part right next to it, but she can’t, so she was literally going off of Braille. I think she said she’s walked into wrong classrooms before and things. I’m like, “Nope, that’s your school’s job. They need to make things accessible for you.” Unfortunately, kids don’t understand the law yet, and a lot of times, their parents are clueless and don’t help their kids. When I talk to parents, I’m like, “You need to understand the ADA. You need to teach your kids their rights, because unfortunately, when you’re disabled, if you don’t advocate for yourself and you don’t fight for your rights, you just don’t get anything, period.”

I’ve had more than one visually impaired or disabled person tell me that when they were in school, if they showed up to class and their teacher didn’t accommodate them, as in they didn’t give them the supplies they needed, the materials in large print or in electronic format, they just sit back and do nothing the entire class, and that was their schooling. They just did nothing. They literally just sat there for most of their classes because they were like, “Oh, if my teacher’s not going to do it, then I’m just going to sit here.” That wasn’t me. I’m a very thick-headed person. I am a very independent kind of person so I would, every single class, have to go up to my teacher while class is starting, “Hey, did you send this to me yet? Hey, did you send this to me yet? Hey, did you send this to me yet?” That’s what I had to do every single day just to get an education.

I totally understand these other kids who didn’t do that because I’m like, “Well, you’re just doing what everybody else is doing.” All the other kids have to do is show up and sit down. That’s, again, why it makes me laugh so much when they’re talking about the stereotype of disabled people being lazy. I’m like, “What’d you have to do in school? You just sat there and everything was handed to you. I had to fight every single day just to get my classwork, my quizzes, my tests.” When I got to the university level, I had to almost bring it to a legal place of suing my school because I had professors just refuse to accommodate me. They’d sign off on my accommodations on the first day of class like they were supposed to, and they just ignore my emails. They wouldn’t send me any notes, anything.

One day, I just compiled about 5 pages worth of emails showing, “Hey, I’ve reached out to my teachers; I’ve reached out to their supervisors; I’ve reached out to the services for students with disabilities department. I’m not even getting class materials. How am I supposed to take tests when I’m not even given the notes that everybody else is getting?” Then things really turned around, because basically, I handed their Civil Rights and Equity Department 5 pages of proof that I could very easily sue and win. Because at university, you’re paying all this money to educate you and then you don’t even get taught. It’s really just understanding your rights, understanding you have choices with your accommodations. That’s the big points for me, I think.

Jillian Comstock:

Yeah. It’s definitely eye-opening, hearing about specific challenges you faced and how you navigated through them. As I do these interviews, sharing people’s stories who are going through a similar experience such as yourself, I’m learning that the emotional landscape is winding. How have you navigated the range of emotions that come with living with Stargardt’s disease? Were there any certain coping mechanisms, activities, or people that supported you in navigating the journey to where you are now?

Stephanie Renberg:

In the beginning, I just really didn’t talk about it. I definitely feel like having a disability is exactly the same as going through the stages of grief and loss, because you literally lose something. You lose a piece of yourself no matter what your disability is. You’re literally losing a piece of yourself. For me, it was my eyesight, and so the first stage in that is denial. I think that, for me, it wasn’t completely I was actively trying to be in denial. It’s the fact that I was 9 and I had no idea what was going on, but there was a lot of little steps and there were people who helped.

I would say as soon as I got into high school, I made this one friend who also had disabilities, but she was a very invisible disability kind of person so it just wasn’t quite as obvious for her, but she just had a very good understanding of what it was like. I have to say, she was the first person to ever act like my disability was normal. Everybody else always acted very standoffish, because disabilities are taboo in society. Everybody just gets extremely uncomfortable because nobody knows anything about them. Most people, when they don’t know about something, they get shy. Some people actually get angry, people get awkward rather than being intrigued and wanting to learn more. Unfortunately, that’s not how most people react to not knowing something. She treated me normally.

I also got a vision specialist when I was in high school, who was amazing because she was young. She was like how old I am now when I was in high school, and she had a mother who was visually impaired so she had grown up with someone in her household that was visually impaired, so it was completely normal to her. This has literally been her life. She was another person that treated me like it was normal. I became comfortable starting to joke about my disability. There’s a lot of funny things you can say about being disabled. It’s like my life is a comedy, so I started making little jokes here and there. That was a big game changer for me because I was like, “Oh, wow, this is the first time in my life that I talk about my disability and there’s such a positive response from people.”

Always in my life, there had been a negative response, and then I found people where it was a neutral response. It was like it’s no big deal. Finally, I found a way where it was a positive response. I would say that that was near the end of high school for me. In college, I definitely hit some low points because I had such difficulty getting accommodated in college. It was a lot. But then leaving college, going into work, that was actually even harder. Fast forwarding past all of that, honestly, getting on social media was very helpful to me, because BlindTok is very happening. I would say there’s a lot of blind people on BlindToks.

When you have a disability, especially something that’s rare as what I have, you never meet another living soul with what you have, and social media is the only way that blind people have been able to meet other blind people. There are such thing as support groups and whatnot, but I had gone to a few support groups and it wasn’t any young people. It was mostly just people who were of retirement age who had only lost their vision in retirement age, so it wasn’t the most helpful. There’s not too much you can bond over with that, so going and getting on BlindTok was huge for me. I heard all these stories from people that were like, “Oh my gosh, I’ve literally been through that.” It’s the first time in my life I had heard of anyone else going through that. It’s very easy to just think you’re completely alone when you’ve never interacted with another person who’s actually experienced what you’ve experienced.

Jillian Comstock:

Speaking of that, My Hero, we are all about recognizing those that have embraced life’s challenges and turned it into something powerful and hopeful for others. Can you share ways in which you have not let your own obstacles define you, and what advice would you give to others going through a similar experience?

Stephanie Renberg:

There’s just so many obstacles when you’re blind. I feel like, for me, what I had to just get used to and to tell myself, I feel like the hardest obstacle when you’re blind or disabled is actually when you can’t do the simplest of tasks. Because it’s one thing to like, I can’t drive, I’ll never be a pilot, those more complex things. But it’s like when you bought something and you literally can’t get to what you bought because you can’t figure out how to open the packaging because you can’t see it, it’s just things like that that absolutely destroy you. I love this movie with Anne Hathaway that has her as someone in her mid-20s having Parkinson’s, I feel like that’s what it’s called, and so there’s a scene where she just can’t open a bottle or she can’t open Pop-Tart. She can’t open a bottle, and then she just breaks down. It’s the simplest tasks that are really what gets to people.

For me, my biggest advice with those kind of obstacles is that you can’t break down with those little things, because it’s everything. The hardest thing with being disabled is just to accept it. Acceptance, like I said, with grief, it’s the last stage. It takes the longest to get to it. It is very difficult. I definitely suggest going through the different stages that I went through that I talked about, but just when you finally accept the simplest things, this is going to be what’s hard for me. You just have to work at it to not break down every time something goes wrong, because if that were the case, you’re going to be breaking down 20 times a day because it’s so hard to just do everything. I don’t know how to really recommend acceptance, but that’s my … It’s a lot to work to, that’s not easy. It’s probably going to take you …

There are plenty of people who have been disabled for a decade and still are not accepting of their disability. It’s the hardest thing to let go, and understand, and accept the fact that you do not have control over this. That’s something that most people can’t accept over the course of their entire lives, that they don’t have control over their life. That’s why I love disabled people who have come through all that process and have reached acceptance because they’re just the most enlightened beings I’ve ever met, so I would say for that. But I guess another recommendation is just you have to put in the effort of looking outward, looking to other people in your community, and looking online and looking for apps, because assistive technology is just life-saving. It’s really what’s going to make the difference for you. I would not be able to do what I do without using the ridiculous number of pieces of assistive technology that I have.

Jillian Comstock:

For my last question, which I ask every interviewee, what would you tell your younger self knowing what you know now?

Stephanie Renberg:

That’s also a difficult one because I just feel like I’d have to tell myself that you just need to go through it. If life were easy, it would be boring. You’re just going to have to push through it. I feel like what I’d really want to tell my younger self is, one, disabilities are normal. Society just tries so hard to convince people that it’s like they’re wrong and they’re bad. I’ve literally had people comment on my video saying, “Hey, it’s not okay that you’re advocating that there’s anything good about disabilities.” I’m just like, “What?” That is the extent to which society has pushed, that disabilities are bad and they’re not normal. The fact is, even if you aren’t disabled now, we come into this world disabled. You’re not an able-bodied person when you’re an infant, and you leave this world disabled.

If you live long enough, you will be disabled. It is literally inevitable for every single human and animal on this planet to be or have been disabled. I’d want to stress that. The other thing is that, I feel like my mom wants to try to tell me everybody has something. I just hated hearing that because I was like, “Oh, yeah, but most people don’t have what I have,” but it’s true. The idea, the concept of there’s always someone out there who’s having a tougher time than you. I guess it’s not great to think, “Let me just think of who’s worse off than me,” but the point is that everybody’s going through something all the time.

Even though you might be going through something that’s really hard, it’s just all chance. Life is like a lottery. Life is a game of chance. At this point, I’m thankful for my disability because as hard as it is, I don’t think I’d be anywhere near where I am right now if I didn’t go through this. I don’t think I would be nearly as good of a person if I didn’t go through this. It sucks a lot, but tragedy is what builds character in people. That’s just fact.

Jillian Comstock:

I completely agree. I was just going to say about what your mom said, I think her point there was just to put things in perspective. That was her goal, but what you said was beautiful. Thank you so much for sharing your journey with us today. Your authenticity, vulnerability, and unwavering positivity is truly inspiring. Here at My Hero 360, we’re deeply moved by the impact you’ve made through your advocacy. Your story certainly serves as a beacon of hope for many. To our audience, thank you for tuning in. We hope to see you here again next time.

If you feel your story will ignite inspiration and positively impact others, go to our website at myhero360.com and submit your story there.

Thank you again, Stephanie, for being with us today. It’s been an honor.

Stephanie Renberg:

Yeah, thank you for having me.

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Connect with Stephanie Renberg:

• Instagram: @stephanierenberg
• TikTok: @stephanierenberg
• YouTube: @stephanierenberg

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