StemCell Therapy

Molly Burke turned to YouTube when she lost her sight, and subsequently all her friends, at 14 years old.

Early teenage years are tough for anyone, but getting bullied and going blind on top of the hormones, puberty, and general unease sent Burke to a really dark place where she even considered suicide. It was delving deep into the world of YouTube that helped pull her out and find a new path.

"I somehow ended up stumbling upon the beauty lifestyle community and that kind of became my home on YouTube," she told Insider. "Because I found these girls who were all around my age, either 13, 14, or 15, and they were talking about all the things that I've always loved: makeup, fashion, dating all of these things that at 14 felt so important to me. And honestly, at 26, still feel important to me."

She said it was like having friends again, because these were things teenage girls talk to their friends about when they're going shopping or having sleepovers, which Burke was no longer invited to. Her former friends stopped talking to her when bullies started seeing her as an easy target.

"It kind of filled that gap in my life," she said. "I could no longer look in store windows, read magazines, or swatch lipsticks on the back of my own hand at Sephora. But I could listen to them describe the colors of the lipsticks. I could listen to them talk about what clothes were trendy."

These videos were a way for Burke to get into the world of fashion and makeup again, through listening to her new-found best friends and big sisters.

Burke knew she one day wanted to set up her own channel, but she didn't actually do it until she was 20. She said she always wanted to wait until she was at the tail end of her journey through recovery and self-acceptance rather than the beginning.

Even at 16 she had the wisdom to understand she wasn't ready, because if she set up her channel and received unkind comments they would destroy her. She knew she had to be in a place where she was fully secure with who she was.

To this day Burke gets comments saying she's faking her blindness, or suggesting she's been cured and is just continuing the facade for attention all of which are things people would say to her back when she first lost her sight.

"It's something I faced at 14 and it crushed me because it felt so invalidating to the very real pain I was living with," she said. "But because I started at 20 when I worked so hard to get through that period in my life and get to the other side, by the time I was receiving those comments, I just laughed. It didn't bother me at all. I'm like, 'Oh, look at you with your cute little ignorance.'"

Molly Burke uses criticism to fuel her. Molly Burke / YouTube

One Reddit post Burke finds particularly hilarious is dedicated to a conspiracy about how she used to be blind, but she found the cure and is keeping it to herself.

"It was like, 'She knows too much about blindness to have not at one point been blind, but I think she either found a cure or got better,'" she said. "Like blindness is the common cold that you just recover from, or like I'm harboring the cure in my two-bedroom LA apartment. Like I know the cure for blindness but I'm not going to share it."

Comments doubting Burke's disability have inspired her to highlight topics that the online world needs to know more about, such as why her eyes shake, how she can look at the camera, and why the eyes of blind people don't all look the same.

Burke uses the criticism whether it's made in good faith or is blatant trolling to energize her to make more content to educate people. This was a lesson she learned through going to five different schools and getting bullied each time.

"By the time I was in grade 11 and 12, it was just like, 'Instead of letting it tear me down, I'm gonna let it fuel me up,'" she said. "Let it fuel my fire, raise me up, push me forward."

Once Burke had been on YouTube for a while, she received a comment that has stuck with her until today. The fan said they didn't just want to hear her talk about blindness, they wanted to hear about her life, too.

For Burke it was a relief, because before YouTube she already had a successful career as a motivational speaker. She loved educating people, but for over two years she was booked solid speaking about being blind, being bullied, and mental illness.

"I was starting to feel like things were defining me again," she said. "I wanted to have another creative outlet, another way to continue to entertain and educate like I did as a motivational speaker, but about the things that also make up Molly. The other facets of who I am: the girl who loves fashion and makeup, and dogs, and funny dating stories, and yoga, and tea, and bubble baths, and all of these other things. And so that's why I started the channel."

Burke, and her trusty guide dog Gallop, now have a huge following of nearly two million subscribers. She has collaborated with some of YouTube's biggest stars, including Shane Dawson, Colleen Ballinger, and James Charles. To maximize clickbait in the titles and thumbnails, creators often refer to her as a "blind girl," which Burke has no issue with because it helps her spread awareness.

In one recent video, Burke emotionally told a story that she and Gallop face all too often. She'd reached a breaking point and had to talk about how Uber and Lyft drivers often cancel her rides when they see she has a dog with her.

"It was just a boiling point for me where I was noticing how much it was truly affecting me emotionally and how much it was weighing on me," she said. "I really needed to talk about it because at the end of the day, I do what I do in the hopes of creating change."

Burke explained in the video how one experience was a stark reminder that she isn't always treated equally because of her disability. After starring in a commercial and celebrating with her friends, her day was ruined when the ride she had ordered to get her home drove off upon seeing Gallop.

"My guide dog for me isn't a choice," she said in the video. "Gallop isn't a choice. Gallop is my mobility, he is my freedom, he is my independence. The best way I can explain it is Gallop to me is what a wheelchair is to someone who is paralyzed. It is a need, it is not a want."

Burke told Insider she believes people won't care about a cause until they are given a reason to, because there are so many issues in our world to be passionate about. That usually comes with having a family member or close friend who has a disability.

"I want to be that reason," she said. "I want people to feel connected to me enough to be that real human in their lives that makes them care about this community more and helps them understand that more."

Burke loves what she does because it combines her two passions: performing and educating. But she never intended to become the "blind girl of YouTube."

"I wanted to be one of many blind people, one of many disabled people, because their success doesn't take away from my success," she said. "Their success builds the success of our community, gaining representation and breaking barriers to the rest of society. And that's ultimately what I've always wanted."

Burke said if the blind community had more voices on YouTube, it would take a lot of pressure off her. Being a prominent blind person on YouTube means people often mistakenly think she represents the whole blind community.

"That has come with blind people being my biggest supporters and blind people being my biggest haters," she said. "Because the blind people who feel like I'm representing them love me. But the blind people who don't feel like I represent them dislike me because they don't feel like my content is authentic to them."

Burke's experience is just hers, and it shouldn't be taken as the one and only story there is. That's why she always wants to make it clear in her videos and public speaking that she is not all blind people.

"I'm Molly and Molly is blind," she said. "Don't take my experience as the experience of blindness."

Molly Burke doesn't speak for the entire blind community. Chris Sanders

In one example, Burke decided she was going to get laser hair removal on her legs, but she had never shaved before (which is a requirement before the procedure). Her mother, being an "Irish mama who grew up in the sixties," had never been that bothered about hair removal, so when the time came for Burke to ask her about it, she simply took her daughter to get waxed instead.

Burke thought it would be a fun video to film herself shaving her legs for the first time. She didn't expect the backlash she received.

"All these blind girls were like, 'You are making it seem like blind girls don't know how to take care of themselves, this is ridiculous,'" she said. "I was like, I'm sorry, did you ever hear me say that once in a video? Did you ever hear me say I'm the first blind girl ever to shave? Nope. Never said it."

The expectation to represent all blind people is not one Burke asked for, or something she thinks is fair. It's too much pressure for one person.

"I cannot bear that weight because no matter how hard I try, I can never represent every blind experience," she said, "And that's why I always encourage other blind people to make content and to share their perspective."

Another thing that divides the blind community is wheter or not they want to be cured. Burke grew up in the world of the medical model of disability, which is the belief that a cure for your disease or condition is paramount. Essentially it means seeing disability through the lens of an able-bodied person, and assuming that it must be depressing, inconvenient, and terrible.

She was literally the face of a charity whose sole goal was to find a cure for her disease a breakdown and loss of cells in the retina called Retinitis pigmentosa.

She does not think organizations and charities should stop searching for a cure, but she does want to change the way the world sees and talks about it. She's tired of the fundraisers that describe disabilities like blindness as a devastating, life-ending thing with a young girl who will "never pick her own wedding dress" or "see her family smile" because she "lives in darkness."

"If I'm being told that my whole life and then I go blind and there is no cure for me, how the hell am I supposed to feel about myself?" she said. "Depressed, broken, less than, incomplete? Like I need to be fixed or change in order to be whole, in order to be successful, in order to find love and success in life?"

#wef20

A post shared by Molly Burke (@mollyburkeofficial) on Jan 27, 2020 at 12:37pm PSTJan 27, 2020 at 12:37pm PST

Burke now believes in the social model of disability, which means tackling the misconception that the only option to be successful, happy, and whole as a disabled person is through finding a cure.

"That is absolute garbage," she said. "We as disabled people shouldn't be told that inherently we are less than or our life won't be as good because we are disabled."

The way we talk about a cure has a great impact on how we will live our lives, she said.

"It breaks my heart how many disabled people don't live life, they sit and wait for a cure," she said. "That is no way to live."

Burke went through a long journey of feeling angry, broken, and hopeless to reach where she is now: She does not want to be cured. It took around four years of discussions with her disability mentor, with whom she is still very close, to be open to hearing that her life was enough as it is, and how she would be able to live happily without a cure to her blindness.

Part of that journey was accepting that a cure for Retinitis pigmentosa will probably never be found in her lifetime. Even if there is progress, it will probably a very expensive surgery that results in a slight improvement in shadow and light perception, which Burke has decided she does not want to put herself through. Returning someone's full vision is unlikely to ever be on the cards.

She has accepted that and she feels comfortable, happy, successful, and whole knowing that blindness is just one challenge she faces. If she was cured, all her problems wouldn't be gone. Her focus would just be on a different one.

For example, blind people are less likely to get divorced, which is a statistic Burke loves.

"My friend might get divorced and I might get to live my whole life in a happy marriage," she said. "Divorce is a challenge that they have to cope with. I've learned to deal with my challenges to live with them, to accept them, and to make the most of them. And so I'm not going to change my life in the hopes that I won't have challenges anymore, because that's unrealistic."

When Burke told her parents she no longer wanted her sight back, her mom breathed a sigh of relief and said: "Oh thank God."

"She was so relieved because, as a parent, she had felt so much pressure to help me be my best self," Burke said. "And she had always been taught to think that was through a cure."

She wants more able-bodied parents of disabled children to be open to the idea of the social model of disability because it takes away the pressure of needing to "fix" their child.

"It empowers everyone to just say, 'You know what? We can make damn best of this,'" she said. "We can live our best lives, be happy with the beautiful, wonderful child we do have and empower them to feel beautiful and confident the way they are."

Burke doesn't necessarily think anyone alive right now will live to see the world completely shift to this frame of mind, but she hopes to be at least 0.01% of helping bring that change.

Guide dogs cost between $40,000 and $60,000. Chris Sanders

Burke is currently raising money for the MIRA Foundation through merch sales, which is a charity that provides guide dogs to blind people. The organization is having a really tough time right now, she said, because they are not able to train the dogs (which cost between $40,000 and $60,000) during the coronavirus pandemic and they receive no government funding.

"I'm trying to do my part right now to help my community," she said.

Her job is incredibly stressful and overwhelming at times, but she wouldn't change it for the world. She said even when she's feeling the pressure the most, she refuses to stop or slow down.

"I don't want to because I love this so much," she said. "I can be stressed and overwhelmed and overworked in a job that I hate or I can be stressed, overwhelmed and overworked in a job that I'm so passionate about."

That passion certainly comes through because her followers, both blind and sighted, can always find something to relate to. She said a lot of her content, be it swimwear hauls, hair dye attempts, or storytime videos about first dates, ultimately show her viewers "how normal I am."

"I think if you boil my experiences and story down to one thing that is relatable for everybody is that I've overcome challenges again, and again, and again," she said. "And I will continue to, and I encourage everybody else to do the same."

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Read more here:
Why Molly Burke, who accidentally became 'the blind girl of YouTube,' doesn't want her sight back - Insider - INSIDER

This entry was posted on June 6, 2020 at 7:44 am and is filed under Blindness. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |