A mother and her baby son were removed from a US flight because of their skin.
US blogger, Jordan Flake boarded a domestic American Airlines flight as per usual, having no problems checking in or making it through security. "Before take-off, an employee was called onto the flight to handle ‘a situation’. He came up to my row and asked the two men sitting next to me to get up," she wrote in a Facebook post. Jordan says she and her baby were then directed to leave the flight after being asked for a note from her doctor.
Jordan and her son both have a genetic skin condition known as Ichthyosis which is characterised by dry, thickened, scaly skin. She shares on her YouTube channel, The Flake Files the frustrations of the genetic condition and the inconsiderate comments about her appearance that comes with it.
She says, “Growing up with a visible difference was hard at times. I got rocks thrown at me during recess, I got repeatedly kicked by the girl behind me in gym class. I was so nonstop harassed, that the kid got suspended. The most memorable episode was in 9th grade and although it’s kind of funny now, it was awful and embarrassing at the time. I was constantly getting picked on for being the smelly kid. All the lotions we have to use to soothe and hydrate my skin smell a little different”.
"I think probably the horror point for me was when he said that my face would be good at Halloween," she said.Carly Findlay
“Are you sunburnt?”
Australian author and appearance activist, Carly Findlay knows this narrative far too well. She says it’s disappointing for people with Ichthyosis to have to be "on guard" for situations such as this.
Carly was also born with Ichthyosis and growing up, she didn't know anyone else with a disability and so at school, she was bullied horribly.
Most of her life has been a journey of developing self-belief but it’s often the rudeness of strangers that is harder to tolerate than the disability itself.
Strangers still comment every day on the way she looks even asking about her sex life, but Carly has now embraced her appearance and lives life exactly as she wants.
“Often the first thing people say to me is a comment or question about my appearance. Even before they say hello. They blurt out what they’re thinking – sometimes out of concern, and other times because they don’t think.”
They would say things like:
‘What happened to your face?’
‘Are you sunburnt?’
‘I’m so sorry [for how you look].’
‘Look at her.’
Occasionally, people stare – sometimes glancing quickly, but other times their heads turn, mouths wide open. They stop what they were saying to have another look, nudging their friends - Did you see her?
She says, “it never fails to surprise me that some people just don’t know how to behave. I wonder whether they’d appreciate being asked personal questions as a greeting. Conversely, some people are uncomfortable with my appearance. They avoid conversation and look away. They can barely mutter a hello.”
Face for Halloween
Last year veteran ABC broadcaster, Jon Faine invited Carly to his program to discuss attitudes towards disability. However she, along with many ABC listeners, were flabbergasted by his line of questioning, "I've never met you before," he said at the beginning of the interview. "You look as if you're a burns victim ... It can't be good on Halloween."
Carly said some of Jon's questions were intrusive."I think probably the horror point for me was when he said that my face would be good at Halloween," she said.
"That was really hard and I sat there because I wanted to be professional, you know I wasn't going to storm out. I wanted to give them a chance and to have a really great conversation."
Author and human rights activist, Tara Moss empathetically shared on Twitter how ignorant comments such as this show the challenges of everyday ableism and how exhausting it must be for those who experience it.
It starts with a “hello”
In recent years, Carly has become an advocate for herself and others. Her book, Say Hello is an honest, outspoken and thought-provoking memoir. Her fearless account will challenge your assumptions and beliefs about what it is like to have a visibly different appearance.
You can findSay Hello in all good bookstores and online.
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