17 September 2015

A letter to CEO Susan Wojcicki: on bullying of people with rare medical conditions on YouTube

UPDATE: 3 October - the video has been taken down. Victory! Read about that on the South China Morning Post.

Dear Susan Wojcicki, CEO YouTube.

I am writing to you about cyber bullying on YouTube. You must be so proud of this platform you lead - it is a trove of entertainment and information. But you have reason to be so disappointed by the derogatory, hateful and misrepresenting videos on YouTube.

I have a rare, severe skin condition called Ichthyosis. It's medically challenging, but the social challenges (ridicule, exclusion, comments and stares) are worse. Fortunately the Internet has connected me with some amazing people - I've got friends who are affected by Ichthyosis across the world. It's a wonderful, supportive, resilient community.

On Thursday I was alerted to a video that features two of my friends with Harlequin Ichthyosis, and many other people with visible differences caused by medical conditions. The video was called '15 Terrifying Rare Birth Diseases of all Time'. I was shocked, hurt and and angry. And so very sad for my friends. Please don't watch the video. But do report it.

A YouTube Account called Elite Facts have stolen photos of my friends with ichthyosis and of others. My friends are devastated at the misuse and misappropriation of their photos. It's very upsetting for our community - especially to know that this condition is portrayed as "terrifying".

Elite Facts have ridiculed medical conditions and appearances. They've termed their appearances as 'terrifying', which does nothing to decrease the stigma of living with a visible difference. They are not informing or educating, they are exploiting and bullying. Through allowing comments, they are encouraging hate speech.

I have reported the video and so have many of my friends.

Here are my friends Hunter and Mui at their best.

Mui has been featured on CNN and done a TedTalk about her experience being cyber bullied. She's a rugby referee and she hand her parents are writing a book. Mui blogs here. See that smile?' Gorgeous.

Mui Thomas rugby

And Hunter has chatted to Katie Couric. She's studying abroad right now. She and her father have done great work raising money and awareness for the foundation that supports people with Ichthyosis.

Hunter Steinetz
Hunter Steinetz with Katie Couric

Both women are mentors and role models to children with Ichthyosis - and to me of course. I've not met them in person but I love them. (And I think beautiful smiles are part of the Ichthyosis gene.)

Mui and Hunter are not terrifying. They are smart, driven, positive and beautiful. They deserve dignity and respect. They were hurting so much, impacted by the video and crying at the comments. Look at them together as children.

Hunter tells me, "I am hurt and disgusted that someone would use my image and talk about my condition in a manner that only belittles, not educates. Elite Facts does not portray anyone in that video as a person. They treat those conditions as if it's a joke. I want them to understand that we are real people and we carry on our daily lives."

And Mui says: "I am of course devastated at what I woke up to as no one should have to deal with that. I felt that Elite Facts were incredibly blaise about their choice of material and words. What they did, hurt not just me, but so many others. It's one thing to raise awareness of visible difference. But this was certainly not the way to go about doing so."

They both use the Internet to advocate and educate on their own terms. Their experiences should garner more attention than shock factor videos such as Elite Facts (who reveal with their own actions, are not elite nor factual). The condition is hard enough without content like this being created and spread.

Susan, I ask you, as YouTube CEO, to ensure YouTube is a safe place place for people who look different. I ask you to take action against these bullies - the video creators and commenters. They are hurting real people - and in this case, spreading misinformation that scares the masses.

And I ask you as a mother to protect the vulnerable. To ensure that people like Hunter and Mui, and countless others who look different for whatever reason, don't have to fear stumbling across ridicule and hate speech like this on the Internet.

Thank you - I appreciate you ensuring videos like this aren't created, shared, commented on and perpetuated. We are not freak shows.

Carly Findlay

If you're being cyber bullied, you can get help at ESafety. This is an Australian government website - there will be equivalent websites in your countries.

You can report abusive YouTube content here.

Let Susan Wojcicki know what you think about bullying on YouTube by tweeting her.

EDIT: Mui's parents have started a petition to end shock videos on YouTube. Sign that here.



  1. I'm sorry this happened to your friends and to the other people in that degrading video.

  2. I for one, am grateful the internet and Facebook were not around when I was young. It was bad enough to be bullied by my school mates and total strangers, but to have no control over where your image is seen around the world and not be able to put faces to those douche bags who write nasty comments, is more painful than an already damaged esteem can take. Thank you Carly for this beautifully written letter. I look forward to her response and action. Keep us up-to-date as I know you will.

  3. This is huge. Civil rights should exist on the internet, too. Thanks for taking action. I've reported the video.

  4. I'm so sad and angry that this happened to your friends. Thank you for writing this letter, I'm looking forward to what Susan has to say. Do keep us posted, won't you?

  5. I, unfortunately, watched the video and am so disgusted with the ableism. Using people with different conditions for views? Hydrocephaly is common. None of these conditions are terrifying but what is absolutely terrifying is the stigma people with them have to live with because of videos like this.

    I myself have a rare genetic disease and people with it have been put in "freak shows" since their beginning. Teaching people to fear us does so much damage.

    And to think these people stole your friends' photos?

    I'm so sorry. I've told all my 3,000 twitter followers to report the video.

    1. I have EDS. I hate when it's depicted as a skin stretching or contortion show...I have really bad medical problems from it and I can't do a lot of those things in those shows...so sometimes people don't believe me.

  6. I've reported this as well, how devastating. oxox

  7. I reported it as well. Such a shame that those of us with visible differences cannot be left to just live our lives.

  8. I just don't understand why anyone would do this? I mean, how does it help anyone? I am so sorry that your friends have been involved in this. I hope it gets taken down.

  9. Totally unacceptable behaviour on any level. You are right about Mui and Hunter both being beautiful women, and yes, you can feel their strength shine through. I am sorry and frustrated that our society is still lagging in terms of mindfulness. I will keep an eye out and report the video if I see it being advertised.


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