melissa blake

Woman With Bone Disorder Shares Selfie Everyday For a Year

Social media provides a space for people to connect, to share what’s important to them, and to interact with the world around them through their computers. Unfortunately, it also provides a platform for bullying, bigotry, and hate. People with disabilities are already more frequent victims of bullying. Social media has made this problem even worse. For one woman with a rare bone disorder, cyberbullying has become a part of everyday life.

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Fed up, she spent the last year fighting back against it. How? By taking selfies.

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Melissa Blake: A Woman with a Bone Disorder

Melissa Blake is a freelance writer living in Illinois. She has Freeman-Sheldon Syndrome, a genetic muscle, and bone disorder. In August 2019, she wrote an anti-Tump op-ed piece for CNN. Critics fired back- not at her writing, but at her looks. 

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They called her fat, referred to her as “it”, and likened her to a potato or a blobfish. Some even said she should be banned from posting photos of herself because she was too ugly. 

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Blake responded to her online haters by tweeting three selfies. The tweet was liked more than three hundred thousand times and has been retweeted by more than 38 thousand people. She posted the photos on a Saturday night, and by the following Monday, she had over 26 thousand Twitter followers.

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“I posted the tweet on Saturday night and didn’t expect this huge response at all,” she said. “But I’m so glad that it’s resonating with people and to have something so positive come out of those nasty, negative comments is such a joy!” [1]

Educating Others

She followed up with her viral post by sharing with her followers a snapshot of some of the messages she received. The goal of this post was to educate people on the kind of bullying not only she receives, but that others with disabilities have to deal with as well.

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“And people wonder why I’ve struggled so much with self-acceptance when it comes to how I look and our society’s notion of what “beautiful” is. It’s because of comments like these — comments that dismiss me and deem me unworthy,” she wrote in a blog post [1].

Freeman-Sheldon Syndrome

Freeman-Sheldon Syndrome (FSS) is a genetic disorder that affects the development of the bones, joints, head, and face. Symptoms of FSS include:

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  • Joint contractures (abnormally flexed joints)
  • Spine abnormalities
  • Club feet
  • Characteristic facial features:
    • Small mouth (microstomia)
    • Pursed lips
    • Deep folds between the nose and lips
    • V-shaped chin dimple
    • A narrowing of the eye-opening

People with FSS also often have breathing, eating, and speech problems. Their joint and muscle problems may also get worse over time. 

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In most cases, FSS occurs when the MYH3 gene is not working properly. This is not, however, the case for some individuals. For those people, the cause of FSS is unknown [2].

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A Selfie a Day

After the success of her initial tweet, Blake made a decision: she would begin posting one selfie every day for an entire year. Not only was this a means for her to clap back at the hate she received online, but also to create more visibility for people with disabilities. Melissa is much more than a woman with a bone disorder.

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Each day, she posted her selfie with the hashtag #MyBestSelfie. She accompanied each photo with a caption. Some of the captions were serious and spoke about disabilities, or if she was having a hard day. Others were fun, and she talked about her love for the show The West Wing and silly photo filters.

One Thing In Common

Blake says that while each selfie was different, they all had one thing in common- they all reflected her personality.

“Each was a celebration, and each carried a message,” she said [3].

As the days turned into weeks and weeks turned into months, Blake began to realize that she was getting to know herself in ways she never thought she would. She was feeling more comfortable in her own body and was feeling a sense of freedom she had never experienced before.

“I grew up feeling different (and looking different) from people my age, which definitely had an impact on my self-esteem and self-image. With each click of my iPhone, I felt like I was able to have a conversation with my younger self, telling her all the things I wish I had known back when I was a teenager.” [3]

She did have some doubts, however, wondering if people would think she was vain for posting so many photos of herself. Vanity was never her goal- it was, in her words, to “unapologetically take up space and demand to be seen as a disabled woman”.

TikTok: The “New Teacher Challenge”

Nearly a year after her tweet went viral, Blake found herself the victim of more cyberbullying. This time, came in the form of a viral TikTok challenge, the “new teacher” challenge.

This recent viral trend involves parents showing their kids photos of disabled people, and telling them that the person in the photo is going to be their new teacher. The parent films their child’s reaction, which is usually some mixture of fright, embarrassment, or even disgust. All of this is done, of course, for nothing more than a laugh.

While some may erroneously think this is funny, for people with disabilities, it’s anything but. Not shockingly, Blake found out that her face was one of the photos being used for this vile challenge. One mom also used motivational speaker Lizzie Valesquez’s photo. This prompted Valesquez to take to Twitter to condemn the trend.

“TikTok, I need your help,” she explained. “If you are an adult who has a young human in your life, please do not teach them that being scared of someone who doesn’t look like them is okay. Please. Everything that these kids need to know about empathy and being kind to one another starts at home.” [4]

Tik Tok Doing Nothing

TikTok has done nothing to combat the online hatred. Anytime Blake or anyone else attempts to report the use of her photos, the company sends them a statement saying that they’ve found no violation of the platform’s rules.

“I want to be clear: I am violated. Every single time. Each photo, taunt, and cruel word is a clear violation of my dignity and my worth as a human being,” says Blake. “And every time these platforms fail to take action, they’re sending the message that this bullying is okay.” [4]

She adds that disabled people should never have to get used to being mocked for their appearance.

Bullying People With Disabilities

Blake is just one of the millions of people who have to endure bullying- both in-person and online- because of their appearance. Back in February 2020, a video of a distraught young Quaden Bayles went viral after he was mocked at school. He is often the victim of bullying due to his appearance, which is different due to a form of Dwarfism.

There are too many of these types of stories to list, and sadly, social media has made it even easier for bullies to ridicule their victims. People like Blake have now taken it upon themselves to speak out against the beauty standards set by society.

Blake says that so much of our society and culture is shaped and dedicated by very one-dimensional western beauty standards. 

“Beauty is an asset, whether we like it or not, and there is social currency afforded to those who fit into the “beautiful” category that’s been created by strict Western standards. Acceptance. Success. Even love. In my eyes, it all seems so much easier for the ‘pretty people,’” explains Blake [4].

She continues, adding that society makes it clear that disabilities are not considered beautiful or valuable. She may be a woman with a bone disorder, but that label does not come with limitations.

“Ableism tells us that disabilities are actually shameful and looked down upon by a large majority. Isn’t that why trolls mocked my appearance to begin with?” [4]

Inspiring Others

Since she began posting her selfies, other people with disabilities have reached out to her. They’ve told her that they identify with her words, and some have even begun taking their own selfies.

She has realized that little things, like sharing her experience through photos, can have a huge impact on society, and can become a vehicle for change. She has learned that she, a woman with a bone disorder, can have an impact on the world.

“Disabled people have to fight to be seen and heard. These selfies are for every single disabled person who continues to fight every single day.” [4]

  1. ‘A writer from Illinois with a genetic disorder was made fun of online for her looks. She fired back with a series of cheerful selfies that went viral’ Chicago Tribune Nara Schoenberg. Published September 11, 2019.
  2. ‘Freeman-Sheldon syndrome’ Rare Diseases
  3. ‘After An Internet Troll Told Me I Was “Too Ugly,” I Spent A Year Posting Selfies’ Refinery29 Melissa Blake. Published September 30, 2020.
  4. ‘A Message To TikTok Parents Who Use My Face To Make Their Kids Cry’ Refinery29 Melissa Blake. Published August 26, 2020.
Brittany Hambleton
Freelance Contributor
Brittany is a freelance writer and editor with a Bachelor of Science in Foods and Nutrition and a writer’s certificate from the University of Western Ontario. She enjoyed a stint as a personal trainer and is an avid runner. Brittany loves to combine running and traveling, and has run numerous races across North America and Europe. She also loves chocolate more than anything else… the darker, the better!
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