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Lupita Nyong’o Uproar Spotlights Rare Disorder; Spasmodic Dysphonia

Lupita Nyong'o, Us movie

Lupita Nyong’o apologized for mimicking a disorder for a character in her new movie, ‘Us.’ (Photo: Universal)


Lupita Nyong’o caused an uproar and quickly apologized for revealing she copied a rare disorder to create the voice of her scary character in the horror movie “Us.” But what exactly is spasmodic dysphonia?

A disabilities rights group accused her earlier this week of “stigmatizing” people who suffer from the condition.

“Connecting disabilities to characters who are evil further marginalizes people with disabilities who also have significant abilities and want to contribute to their communities just like anyone else,” said Jennifer Laszlo Mizrahi, president of RespectAbility.

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Margot Durkin, who lives with spasmodic dysphonia, Tweeted her discomfort with the movie.

“I am greatly concerned that our condition has been demonized. Now in the public eye, we are ‘creepy’ sound like we have ‘swallowed a cheese grater.’ Our voice is that of a monster. I believe this mocks our disability, should be strongly condemned,” she wrote.

The backlash cause Nyong’o to immediately backtrack on Thursday (Mar. 28).

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“The thought that I would, in a way, offend them was not my intention,” Nyong’o told “The View.” “In my mind, I wasn’t interested in vilifying or demonizing the condition. I crafted Red with love and care.”

Lupita Nyong’o’s character, Adelaide Wilson, has an evil version known simply as Red. To give that character an evil air, she mimicked the husky, shaky voice caused by spasmodic dysphonia.

Lupita Nyong’o revealed that the affliction was the inspiration for her voice in the movie during an interview with Hollywood trade magazine Variety.

She called it a “creepy voice.”

The affliction causes “involuntary spasms in the tiny muscles of the larynx cause the voice to break up, or sound strained, tight, strangled, breathy, or whispery.” according to the NSDA.

NSDA Executive Director Kim Kuman cautions that spasmodic dysphonia “is not a creepy voice; it’s not a scary voice. It’s a disability that people are living with and shouldn’t be judged upon.”

On “The View,” Lupita Nyong’o qualified her remarks.

“In mentioning, spasmodic dysphonia, I may have been disproportionate to what it actually is in the film,” she said. “I say sorry to anyone I may have offended.”

The disorder is rare. It only affects about 50,000 people in North America. Among them is Robert F. Kennedy Jr. whose “scratchy” voice inspired Nyong’o to mimic the disease for her character.

“The issue at hand is that in order to intentionally achieve a creepy effect, the creative choice was to make the character have a disability — and demonizing the disability,” the National Spasmodic Dysphonia Association wrote on its Web site.

The affliction is a neurological disorder usually brought on by “illnesses such as viral infection, head trauma, bronchitis, surgery, or a stressful event,” it notes.

Although there is no cure, “injections of botulinum toxin (Botox) and speech therapy have proven very effective,” according to medical references.

Hollywood’s penchant for associating disabilities with evil characters goes far beyond voice inflections.

Characters like Darth Vader in “Star Wars,” The Joker in “The Dark Knight,” Voldemort in the “Harry Potter” movies and, most recently, Dr. Poison in “Wonder Woman” all rely on physical deformities to convey evil.

“One of the toughest parts of having a disability is that people make assumptions based on the way you walk, talk or act, sometimes with little understanding of what is causing it,” the group said in a statement.

“This stereotype plays on people’s inherent discomfort with those who do not look the same as them, telling them that disfigurement—and disability,” adds Laszlo Mizrahi.

“In general—makes characters revolting and morally wrong and reinforcing the notion that “we should be afraid of people whose faces and bodies are different from our own.”

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