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Courtesy of Jennie Wilklow-Riley

The scene in the movie lasts only seconds, but it was long enough for Hunter Steinitz.

Long enough for her to see a photo of a baby born with the same rare condition as hers flash on the screen.

Long enough for her to hear that child and others whose photos appear in quick succession described as the product of toxic waste.

Long enough for her to recognize within those images the face of a boy she had met.

“I knew immediately that was Evan,” Steinitz told me on a recent afternoon.

When you have a rare condition, the people who share it make up a small enough network that you tend to know one another by name. That is the case with the community that has formed around ichthyosis, a genetic condition that affects skin growth. Families talk across state lines and international borders. They support one another and they stand up for one another.

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And for weeks, many in the community have been united in outrage that photos of children with the condition, including one whose identity is known, were shown in a movie that is available through Netflix. Families from Maryland to Malaysia have been calling on Netflix, through a petition, a letter and social media posts, to remove the Indian production “<a href="https://www.netflix.com/gb/title/81504462" target=_blank>Gandeevadhari Arjuna</a>” from its platform.

“We’re very easy props, and Netflix needs to understand that and act accordingly,” said Steinitz, who at 28 is one of the oldest people with harlequin ichthyosis in the world. She described the movie scene as furthering harmful beliefs about children who have conditions that cause them to look different. She said she has spent her life getting stared at in public and seeing people afraid to touch her. “People don’t want to shake my hand. People don’t want to take money from me. People don’t want to sit next to me. I am an ‘other,’” Steinitz said.

Her image wasn’t used in the movie, but her photo has been used online without her knowledge or permission before, and she has seen the cruel comments people have made about her.

“I know that to other people I’m freakish, but to hear them repeat it with such vitriol and malice just hurts,” she said. She said she would much rather people ask her about the condition. “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.”

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Knowing what Steinitz and other young people with ichthyosis go through daily is important if you want to understand why their families took on Netflix, which has more than 230 million subscribers. I spoke with several families, and they all described long daily routines aimed at trying to keep their children comfortable and healthy. They also spoke of how hard it is to protect them in ways that go beyond the physical. They have all spent years trying to foster understanding about a condition that has caused children to be bullied, alienated and, in some countries, killed.

As of Friday, the families said they hadn’t heard from Netflix, despite the Foundation for Ichthyosis &amp; Related Skin Types sending a <a href="https://www.firstskinfoundation.org/news/open-letter-to-netflix" target=_blank>letter</a> to the company and Holly Johnson, a mother to a 3-year-old with ichthyosis, starting an online petition. That petition is titled “<a href="https://www.change.org/p/remove-offensive-movie-band-from-netflix?fbclid=IwAR2fHPccHKbmpbWIvd_gHEayoilU3Kig-A5YCNwkZ7zdtP_XfBvr-hL-lhM" target=_blank>Say No to Netflix: Offensive film dehumanizes children with Ichthyosis</a>” and, as of Friday, had drawn more than 10,000 signatures.

Netflix did not provide a comment to The Washington Post. On Saturday, a source close to the film said the producer has addressed the images in questions and replaced them. A new version of the film is expected to be available through Netflix in three or four days. The film’s producer, Sri Venkateshwara Cine Chitra LLP, said in a statement provided to The Post: “We’re deeply sorry for the images that we used in Gandeevadhari Arjuna. We have now edited the film and replaced the images.”

Removing those images was the right move, and a look at the effort that brought about that result shows the power that a community, even a small one, can have when people stand with it. To see why those images should have never been used in the movie — or by anyone without permission — takes just listening to young adults and children with ichthyosis.

In a powerful video posted on social media, they speak about that movie scene.

“My life is not your shock value,” says one.

“Dear Netflix, this is willful ignorance,” says another.

“Dear Netflix, I am not the product of toxic waste,” Steinitz says. She also says, “We in the ichthyosis community work very hard to raise awareness, and you’ve gone and undone that in 30 seconds.”

Jennie Wilklow-Riley, whose 6-year-old daughter Anna was born with harlequin ichthyosis, compiled that video and <a href="https://www.instagram.com/reel/CxvYQ16gWIJ/" target=_blank>shared it</a> through her social media accounts. She lives in New York and found out about the movie from a mom in India.

In the scene that raised concerns, a character is talking about how medical, chemical and nuclear waste can harm newborns when a photo of a baby encased in thick layers of skin, which is characteristic of children born with harlequin ichthyosis, appears on the screen. “And if the newborn manages to survive, then that’s how they turn into,” reads the translated subtitles, before other photos and videos of children with various medical conditions flash on the screen.

“I was just shaking because that could so easily have been Anna,” Wilklow-Riley said of her initial reaction to that scene. “That could have so easily been my child.”

She shares photos of her daughter on social media to raise awareness of the condition, but that also makes her family vulnerable. Vulnerable to those photos being misused and vulnerable to hate. She had to stop using one social media platform because the vitriol grew too unbearable.

Wilklow-Riley said people leave those comments and then go on with their days, not knowing what her daughter has to go through. She has to bathe three hours each day and keep her body covered in Aquaphor at all times. Her skin also does not allow her to sweat in a traditional way, so she has to be careful about regulating her temperature.

Many of the families I spoke with described similar routines. They also said they learned about their children’s conditions only after they were born and that the doctors who delivered their babies didn’t expect them to live long. A mother in the D.C. area said it took 12 years before her doctor confessed to her that after the delivery, she went into a back room and cried.

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That mother, Angeline Hartmann, said her family moved to a D.C. suburb when her son was 3 because they wanted him to grow up in a smaller community where people could get to know him. With that goal in mind, every year before school started, she sent a letter to his classmates’ parents. In it, she told them his condition was not contagious. She also shared with them his favorite color, toys and snacks.

Those details humanized him. That movie scene dehumanized children like him. No one should ever have to say they aren’t a product of toxic waste — and yet, that’s what it caused children and young adults with the condition to do. It’s made them defend their existence.

Wilklow-Riley said when she saw that scene, she recognized Evan Fasciano. His family had sent her family a care package when Anna was born that included pages of instructions on what to do and when to do it. Wilklow-Riley reached out to Evan’s mother, DeDe Fasciano, to let her know about the movie.

Courtesy of DeDe Fasciano

Fasciano told me when she saw that scene, she knew it was her son. She said the clip was taken from a documentary he appeared in when he was 5. He is now 13.

“The fact that they used something from an educational piece for their false narrative is very disappointing,” Fasciano said.

On Saturday, she said her family was relieved to hear that her son’s image would be removed from the film.

“Evan’s image should have never been used without our consent. We hope the film publishers reflect on their poor judgment of the insensitive and dehumanizing use of children’s images,” she said. “We expect an apology to be given to Evan for this unfortunate situation.”

Fasciano said it was comforting, but not surprising, to see the ichthyosis community stand up in the past few weeks for her family and the other unknown children in that scene.

Her son has also stood up for himself. Evan appears at the end of the response video Jennie Wilklow-Riley posted.

“You used me,” he says. “It’s not okay. I deserve better.”

bachelor's from Stanford University

master's from Columbia University Graduate School of Journalism

Theresa Vargas is a local columnist for The Washington Post. Before coming to The Post, she worked at Newsday in New York. She has degrees from Stanford University and Columbia University School of Journalism.

Theresa Vargas

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Kids with rare condition to Netflix: We’re not products of toxic waste

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