Netflix has come under fire for screening a movie that stole footage of children with a real rare skin disease and used it to show the fictional physical effects of toxic waste.
Gandeevadhari Arjuna is a 2023 Indian action-thriller movie that features a subplot involving a family that falls victim to the deadly effects of biohazard waste.
Instead of opting for stage makeup to create a visual for their made-up illness – the producers used an unauthorized clip of Evan Fasciano, now 13, who suffers from an extremely rare skin condition called Harlequin ichthyosis to depict the injuries of toxic waste.
The severe genetic disorder causes skin to form large diamond-shaped plates separated by deep cracks covering most of the body. The skin abnormalities affect the shape of the eyelids, nose, mouth and ears and also limit movement in limbs. The restricted movement can lead to breathing difficulties and respiratory failure in babies – making it very rare for infants to survive the newborn period.
Hunter Steinitz, 28, has the rare condition and was shocked and horrified when she recognized a clip of Evan in the movie on Netflix as he was described by characters as a product of toxic waste.
Netflix has come under fire for screening a movie 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, who has Harlequin ichthyosis)
Gandeevadhari Arjuna is a 2023 Indian action-thriller movie that features a subplot involving a family that fall victim to the deadly effects of biohazard waste
The severe genetic disorder causes skin to form large diamond-shaped plates separated by deep cracks covering most of the body. The skin abnormalities affect the shape of the eyelids, nose, mouth and ears and also limit movement in limbs. The restricted movement can lead to breathing difficulties and respiratory failure in babies – making it very rare for infants to survive the newborn period
Steinitz, who knows Evan because of how rare their condition is and how tight-knit the support-community became, said: ‘I knew immediately that was Evan.’
She told The Washington Post: ‘We’re 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 movie scene furthered harmful beliefs about her condition and children who suffer from the rare skin disease and all other illnesses that cause people to look different.
Members of the harlequin ichthyosis community were rightly outraged by the insensitive use of video featuring someone with a rare disease for the sake of entertainment purposes in a $4.8 million movie.
The Foundation for Ichthyosis & Related Skin Types sent a letter to Netflix but hadn’t heard back as of Friday. Members of the ichthyosis community came together to make a video voicing their upset
Members of the harlequin ichthyosis community were rightly outraged by the insensitive use of video featuring someone with a rare disease for the sake of entertainment purposes in a $4.8 million movie
Steinitz’s image wasn’t used in this movie – but pictures of her have been used online without permission before which has subjected her to hateful comments about her appearance made by internet trolls.
She said: ‘I know that to other people I’m freakish, but to hear them repeat it with such vitriol and malice just hurts.
‘I am used to hearing children say to their parents, ‘Mommy, why is she red?’ And every time I want to answer that question. I don’t want that child to be shut down. I don’t want that question to go unacknowledged.’
The Foundation for Ichthyosis & Related Skin Types sent a letter to Netflix but hadn’t heard back as of Friday.
Members of the ichthyosis community came together to make a video voicing their upset.
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. It’s not okay.’
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 to a 3-year-old with ichthyosis, created an online petition called Say No to Netflix: Offensive film dehumanizes children with ichthyosis
Holly Johnson, mother to 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 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 is indirectly endorsing discrimination against individuals living with ichthyosis. This goes against their commitment to promoting inclusivity, diversity and awareness in their programming,’ the petition said.
The petition calls upon Netflix to remove the offensive film: ‘By removing “GANDEEVADHARI ARJUNA” from Netflix’s platform, we can send a powerful message that dehumanizing portrayals of people with ichthyosis or any other condition are unacceptable. We urge Netflix to prioritize responsible content selection that promotes inclusivity and respect for all individuals.’
Source: | This article originally belongs to Dailymail.co.uk
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