Netflix has come under fire for showing a film that stole footage of children with a truly rare skin disease to show the fictional physical effects of toxic waste.
Gandeevadhari Arjuna is a 2023 Indian action thriller film with a subplot about a family that falls victim to the deadly effects of organic waste.
Instead of opting for stage makeup to create an image for their made-up illness, producers used an unauthorized clip of now-13-year-old Evan Fasciano, who suffers from an extremely rare skin condition called harlequin ichthyosis, to create the Depict injuries caused by toxic waste.
The severe genetic disorder causes the skin to form large, diamond-shaped plates separated by deep cracks that cover most of the body. The skin abnormalities affect the shape of the eyelids, nose, mouth and ears and also limit movement of the limbs. The restricted movement can cause breathing difficulties and respiratory failure in babies – so infants very rarely survive the newborn period.
Hunter Steinitz, 28, suffers from the rare disease and was shocked and horrified when she recognized a clip of Evan in the film on Netflix in which he was described by the characters as a product of toxic waste.
Netflix has come under fire for showing a film that stole footage of children with a truly rare skin disease and used it to show the fictional physical effects of toxic waste (pictured: Evan Fasciano, now 13, who has harlequin ichthyosis suffers).
Gandeevadhari Arjuna is a 2023 Indian action thriller film with a subplot involving a family that falls victim to the deadly effects of biohazardous waste
The severe genetic disorder causes the skin to form large, diamond-shaped plates separated by deep cracks that cover most of the body. The skin abnormalities affect the shape of the eyelids, nose, mouth and ears and also limit movement of the limbs. The restricted movement can cause breathing difficulties and respiratory failure in babies – so infants very rarely survive the newborn period
Steinitz, who knows Evan because of the rarity of her condition and the close support community, said, “I knew right away it was Evan.”
She told The Washington Post: “We are very simple props, and Netflix needs to understand that and act accordingly.”
The 28-year-old, who is among the oldest people with harlequin ichthyosis, said the film scene fueled harmful ideas about her condition and children suffering from the rare skin condition and all other illnesses that cause people to look different.
Members of the Harlequin Ichthyosis community were rightly outraged by the insensitive use of videos depicting someone with a rare disease in a $4.8 million film for entertainment purposes.
The Foundation for Ichthyosis and Related Skin Types sent a letter to Netflix but had not received a response as of Friday. Members of the ichthyosis community came together to make a video expressing their anger
Members of the Harlequin Ichthyosis community were rightly outraged by the insensitive use of videos depicting someone with a rare disease in a $4.8 million film for entertainment purposes
Steinitz’s image was not used in this film – but images of her have previously been used online without permission, leading to her receiving hateful comments about her appearance from internet trolls.
She said: “I know I’m strange to other people, but it just hurts to hear them repeat it with such malice and malice.”
“I’m used to children saying to their parents: ‘Mom, why is she red?'” And every time I want to answer that question. I don’t want this kid to be taken out. I don’t want this question to go unanswered.”
The Foundation for Ichthyosis and Related Skin Types sent a letter to Netflix but had not received a response as of Friday.
Members of the ichthyosis community came together to make a video expressing their anger.
One said: “Dear Netflix, this is willful ignorance.”
Another said: “My life is not your shock value.”
“Someone else said, ‘Dear Netflix, I am not a product of toxic waste.’
Evan Fasciano said, ‘You used me.’ That’s not OK.’
In the video, one person said: “Dear Netflix, this is willful ignorance.” Another said: “My life is not your shock value.” “Someone else said: ‘Dear Netflix, I am not a product of toxic waste.’ Evan Fasciano said, ‘You used me.’ That’s not OK.’
Holly Johnson, mother of a three-year-old with ichthyosis, has launched an online petition called “Say No to Netflix: Offensive Film Dehumanizes Children with Ichthyosis.”
Holly Johnson, mother of a three-year-old with ichthyosis, has launched an online petition called “Say No to Netflix: Offensive Film Dehumanizes Children with Ichthyosis.”
The petition has reached over 11,000 signatures and Johnson urged more people to sign.
“It is crucial for platforms like Netflix to take responsibility for the content they provide.” By streaming “GANDEEVADHARI ARJUNA”. Netflix indirectly advocates discrimination against people with ichthyosis. “This contradicts their commitment to promoting inclusivity, diversity and awareness in their programs,” the petition states.
The petition calls on Netflix to remove the offending film: “By removing ‘GANDEEVADHARI ARJUNA’ from the Netflix platform, we can send a strong message that dehumanizing depictions of people with ichthyosis or other medical conditions are unacceptable.” “We “Urge Netflix to prioritize responsible content selection that promotes inclusivity and respect for all people.”