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Netflix has been criticized for screening a film in which it stole footage of children with a rare skin disease and used it to show the fictional physical effects of toxic waste.
Gandeevadhari Arjuna is a 2023 Indian action-thriller film that features a subplot involving a family falling victim to the deadly effects of biowaste.
Instead of opting for stage makeup to create a visual of their made-up illness, producers used an unauthorized clip of Evan Fasciano, now 13, who suffers from an extremely rare skin condition called harlequin ichthyosis, to describe injuries caused by toxic waste.
This serious genetic disease causes large diamond-shaped patches to form on the skin separated by deep cracks covering most of the body. Skin abnormalities affect the shape of the eyelids, nose, mouth and ears and also limit limb movements. Restriction of movement can lead to difficulty breathing and respiratory failure in babies, making it very rare for infants to survive the neonatal period.
Hunter Steinitz, 28, suffers from a rare disease and was shocked and horrified when she recognized a clip of Evan in the Netflix film as he was described by the characters as a toxic waste product.
Netflix was criticized for screening a film that stole footage of children with a real, rare skin disease and used it to show the fictional physical effects of toxic waste (pictured: Evan Fasciano, now 13, with the condition harlequin ichthyosis)
Gandeevadhari Arjuna is a 2023 Indian action-thriller film that features a subplot involving a family victimized by the deadly effects of biohazardous waste.
This serious genetic disease causes large diamond-shaped patches to form on the skin separated by deep cracks covering most of the body. Skin abnormalities affect the shape of the eyelids, nose, mouth and ears and also limit limb movements. Restriction of movement can lead to difficulty breathing and respiratory failure in babies, making it very rare for infants to survive the neonatal period.
Steinitz, who knows Evan because of the rarity of his illness and the cohesive community of support, said, “I immediately knew it was Evan.”
She said Washington’s positiont: “We are very easy props, and Netflix needs to understand that and act accordingly. »
The 28-year-old, who is one of the oldest people with harlequin ichthyosis, said the scene in the film reinforced harmful beliefs about her condition and about children who suffer from the rare and serious skin condition. of all the other diseases that make people look different.
Members of the harlequin ichthyosis community were rightly outraged by the insensitive use of a video featuring a person with a rare disease for entertainment purposes in a 4.8 million-selling film. dollars.
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 discontent.
Members of the harlequin ichthyosis community were rightly outraged by the insensitive use of a video featuring a person with a rare disease for entertainment purposes in a 4.8 million-selling film. dollars.
Steinitz’s image was not used in this film – but photos of her were used online without permission, subjecting her to hateful comments about her appearance from internet trolls.
She said: “I know I’m weird towards other people, but hearing them repeat that with so much vitriol and malice hurts.”
“I’m used to hearing children say to their parents: ‘Mom, why is it red?’ And every time, I want to answer this question. I don’t want this child to be closed off. 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 discontent.
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 the product of toxic waste.’
Evan Fasciano said: “You used me. I’m not fine.’
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 the product of toxic waste.’ Evan Fasciano said: ‘You used me. It’s not okay.’
Holly Johnson, mother of a 3-year-old with ichthyosis, created an online petition called Say No to Netflix: Offensive Film Dehumanizes Children With Ichthyosis
Holly Johnson, mother of a 3-year-old with ichthyosis, created an online petition called Say no to Netflix: Offensive film dehumanizes children with ichthyosis.
The petition has reached more than 11,000 signatures and Johnson urged more people to sign.
“It is crucial that platforms like Netflix take responsibility for the content they offer. By broadcasting “GANDEEVADHARI ARJUNA”. Netflix indirectly endorses discrimination against people living with ichthyosis. This goes against their commitment to promoting inclusion, diversity and awareness in their programs,” the petition states.
The petition calls on Netflix to remove the offensive film: “By removing “GANDEEVADHARI ARJUNA” from the Netflix platform, we can send a powerful message that dehumanizing depictions of people with ichthyosis or any other illness are unacceptable. We urge Netflix to prioritize responsible content selection that promotes inclusion and respect for all.