Celebrities blast TikTok over ban of young disabled Wichitan; account later restored
TikTok banned an account featuring a young Wichita man with a debilitating skin condition and then restored it when celebrities — including Big Bang Theory star Kaley Cuoco and media personality Perez Hilton — blasted the video-sharing site for insensitivity to people with disabilities.
TikTok began Thursday labeling pictures of Marky Burrola-Jaquez, whose daily reality is cracked and blistered skin, as “violent and graphic content,” according to screenshots collected by his mother, Melissa Jaquez.
One message she received said “We do not allow content that is excessively gruesome or shocking, especially that glorifies abject violence or suffering.”
Marky was born with epidermolysis bullosa, a rare genetic disorder causing fragile skin that blisters and bleeds at the slightest contact — commonly called butterfly skin. He wasn’t expected to live past 14, the age at which his brother, Carlos, died in 2013.
Marky is something of a celebrity himself and his struggle has been featured in Kansas media, on the Truly TV cable show Born Different, in a documentary by the band Elevation Worship and on ABC’s Good Morning America.
He’s followed on social media by several TV stars who took up his case on Friday.
“@TikTok_us has done it again!” tweeted Hilton. “They have permanently banned badass mom @melissa_2010. Why? Because she shared videos of her son, who has #EpidermolysisBullosa. The Chinese-owned social media app regularly discriminates against people with disabilities.”
Cuoco posted a picture of Marky in her Instagram story and declared a personal social media blackout:
“This is all I will be posting today in honor of my amazing friend Marky and his mom @Melissa_2010 who has spent her life sharing her son’s story of @EBMRF through social media.” Cuoco wrote. “She has been banned from TikTok because of her videos which include Marky. TikTok should be ashamed.”
Ashley Aubra Jones, best known for her roles in the network soaps The Young and the Restless and The Bold and the Beautiful, shared a Melissa Jaquez post objecting to TikTok’s treatment of her son.
Jaquez said she had tried to explain to TikTok that Marky’s wounds are caused by his disability, not violence.
After TikTok put the warning labels on their videos “I e-mailed them and I said ‘Hey, it’s very offensive to somebody with a disability, . I use this platform for awareness and when you put this over my son’s pictures, with somebody with a disability, it’s offensive and could you please remove this.’”
Then the videos started getting deleted.
When she objected again, TikTok “banned my entire account with no explanation and no option to appeal.”
Late Friday, a TikTok spokesperson said the company had rethought the ban and restored the account after looking into the circumstances.
The spokesperson said the account was not removed because of Marky’s appearance, but that someone had flagged it as a possible violation of a TiKTok rule that prohibits children under 13 from having an account.
Marky is 20, although his disability makes him look younger. His mother handles their account, which is in her name, because he’s unable to.
Jaquez isn’t buying TikTok’s explanation.
“My reaction is they’re absolutely full of bullcrap,” she said.
She said she was contacted Friday by the mother of a disabled child in Britain who filed a lawsuit after her TikTok account was banned twice.
“She actually had an interview with BBC today,” Jaquez said. “She said the exact same thing, that they told her that they thought her 3-year-old daughter was uploading videos — both times.”
The Jaquez TikTok account has more than 130,000 followers across the country, attracted by Marky’s optimistic outlook and often-expressed Christian faith in the face of his debilitating condition.
“I pray over this little boy every day and he’s somebody, he loves Jesus, he loves God, he is the most gentle spirit,” said Debbie Winstatt, a devoted social media follower of Marky who lives in Lexington, Ky.
“To ban someone on TikTok or label their pictures as graphic to me sent me though the roof of my car today,” she said. “I don’t know what is going on in this world. What’s bad is good, what’s good is bad. This is not OK.
“I’m shaking right now because I can’t imagine being this mother and having a son get banned off TikTok, or having my child’s face where they put a graphic on it. I just can’t.”
This story was originally published April 23, 2021 at 6:44 PM.
