When Molly Burke lost her vision at 14, teens bullied her. She had been speaking publicly at events since she was 5, but the taunting and harassment stopped her from wanting to continue.
“I didn’t want to put myself out there for more ridicule or judgment. I was so angry at the world. I wanted to hide,” Burke, 28, of Los Angeles, told TODAY. “I realized that I can be either angry at society’s ignorance, or I can do something to actively educate society and change that."
So she returned to public speaking, and by age 18, she'd become a professional motivational speaker. But her grueling schedule of appearances burned her out, and by 20 she returned home to live with her parents and reassess her future.
“I thought back to the 14-year-old who was really the reason I’m doing all of this, and I wanted to be the role model that I didn’t have when I needed it,” she said. “Where did 14-year-old Molly turn to when she had no friends anymore and she needed someone? I turned to YouTube.”
Burke watched beauty and fashion videos as a teen when she felt alone, and those girls “felt like my friends.”
“They really helped me rebuild my confidence, and so I thought if I really want to be that role model that I didn’t have when I needed it, I need to meet people where they are and they’re online,” she explained. “That’s when I started my YouTube channel.”
Burke has since expanded to other forms of social media, but the content remains the same: She shares her life as a blind woman and the things she enjoys, such as fashion and makeup. Social media offers her and other disabled people a platform when they are often under-featured in other media.
Only 2.8% of characters on broadcast programming in the U.S. have a disability, according to 2021 research from GLAAD.
“That’s ridiculous given there’s over a billion disabled people in the world," Burke said. "There should be a disabled person in every single piece of media because guess what? There are disabled people (everywhere), whether you know they’re disabled or not.”Burke hasn't always been blind. At age 4, she was diagnosed with retinitis pigmentosa, a group of rare eye diseases affecting the light-sensitive part of the back of the eye, aka the retina, according to the National Eye Institute.
Burke's type of retinitis pigmentosa “is a very rare gene mutation that causes more severe early-onset blindness compared to other more common forms of RP,” she said. “Initially upon diagnosis, they suspected I'd lose my vision in my 30s or 40s or perhaps even later.”
So, she spent most of her childhood preparing to lose her vision, which went away little by little until, at age 14, she lost the majority, leaving her able to see light and shadow. But it wasn’t until she was 16 that she learned what type of retinitis pigmentosa mutation she had. Knowing wouldn’t have changed any of her treatments, but it would have better prepared her to lose her vision as a teen.
While Burke dispels myths about blindness and disability on social media, that doesn’t mean she’s immune still from trolls or misconceptions people still have.
“The media has so often portrayed (blind people) to be wearing dark glasses and not being necessarily fashionable and trendy and oftentimes older,” she said. “I’m a young woman who loves makeup and fashion and wears high heels and has red lips, has tattoos, all of those things we never see blindness portrayed as. And they’ll say, ‘Well, you’re not blind.’”
She wants people engaging in her social media to learn something about blind people to lessen the discrimination and myths she and others face.
“I hope that it’ll decrease how much I deal with it and how much other people deal with it,” Burke said. “I really believe I was born to do this. I was given this life circumstances, and I was given a specific set of skills and talents that I have been able to marry them and do something with it."
"A lot of my disabled friends, blind or other disabilities ... don’t want to talk about it," she continued, adding that they just want to live their lives — cook, play with their children, enjoy their hobbies — without having to explain what their lives are like to other people.
“It takes people like me and other disabled creators doing what we do to allow other disabled people who don’t want this to get to have that life,” Burke said. “They deserve that privacy.”
There are many myths she wish people didn’t still believe. She knows that people can’t understand what it’s like to not have their vision, but that doesn’t make blind people helpless.
“We are more capable than people give us credit for,” she said. “Of all of your senses, sight is what you rely on the most, so I understand the idea of not having that would be really difficult. But for us, we’re trained. We adapt. This is our normal.”
She also hopes people understand that blindness, like deafness and other disabilities, exists on a continuum.
“There’s a nuance to disability. We are all unique. 90% of blind people have some remaining vision," she said. "If somebody says they’re blind and then they say something’s green, they might have been able to see that. That does not make them less blind.”
While Burke knows her guide dog is adorable, she also wishes people would stop petting her.
“My favorite is when people are selfish enough to be petting my dog and then say to me, ‘I know I’m not supposed to do this, but I really love dogs,’” she said. “It doesn’t give you the right to pet my dog … and be selfish and ignore that boundary because that boundary is there to keep me safe and to keep my dog focused.”
When Burke isn’t creating content for her social media followers, she loves shopping. She goes to brick-and-mortar stores because she prefers feeling the fabrics and how the clothes fit on her body. Often a friend joins to tell her how she looks.
“For me, fashion is tactile. It’s about the quality, the cut of the fabric, the stitching, how it lays,” she said. “I love going around and just feeling every single item in a store. I’ll pull out the things I like and then I’ll have somebody describe the color pattern and find the correct size.”
She hopes people begin considering disability more thoughtfully and working toward more inclusion because it might be something they encounter in their own lives one day.
“The disability community is the only minority group that anybody can join at any point in their lives,” she said. “Accessibility, diversity and inclusion of disabled people, representation — these things should matter to everybody because you never know when you or your loved one will need it.”