Jordan Peele’s sophomore film, Usdebuted just days ago, March 22, 2019. In an interview for VarietyLupita Nyong’o, who plays both of the main characters in the film, tells the interviewer that she was “inspired by the condition ‘Spasmodic Dysphonia.’” However, in this same interview, she states that the voice is intended to be “inspired by” the condition and not an “exact replica.”

Following this interview, Lupita has received an overwhelming amount of pushback from white disabled people and organizations—most notably, RespectAbility, who reportedly released a now-updated statementaddressing their concern with the use of this particular disability for the film. In that statement, Jennifer Laszlo Mizrahi, the president of the disability advocacy nonprofit, had this to say: “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.” The issue with this, however, is that it is evident Mizrahi has either not watched the film or did not understand it. 

In Us, Red, who is the character in question, is revealed to actually be the protagonist. In her formative years, she wandered into a house of mirrors where she would eventually bump into her ‘tether’, the girl/woman we know throughout the film as Adelaide. What is later revealed in the film is that the original Adelaide, known now as Red, was choked and knocked out by her tether, tied to a bed, and was raised by people who spoke a language unrecognizable to humans. Watching how hard she was choked, and the amount of trauma that was to follow, it is a more than safe assumption to say that her vocal chords had been damaged. While Spasmodic Dysphonia is not necessarily caused by trauma—and is a condition that is neurological—doctors and scientists have also linked its development to “injury to the voice box.” With all these things combined, it is reasonable to suggest that the voice Lupita chose to use for Red was not only one that is brilliant, but is also one that is true to the reality of the character.

RespectAbility is an organization that has been under scrutiny several times before for its anti-Blackness and racism, and it is reported that Mizrahi is a Zionist. The Harriet Tubman Collective, a collective founded and operated by Black Deaf and otherwise Disabled people, detailed in a report the extent to which RespectAbility and Mizrahi has gone to erase and/or steal the work of Black Disabled writers and thought-leaders. People who have been organizing, in some capacity, before Mizrahi decided to shift her focus from her pro-Israel writing and advocacy to disabilities advocacy.

The National Spasmodic Dysphonia Association (NSDA) also released a statement, which is quoted in the piece by RespectAbility, in which they state that what is “difficult for us, and for the thousands of people living with spasmodic dysphonia, is this association to their voice with what might be considered haunting, wilted or a result of emotional trauma especially since spasmodic dysphonia is a neurological disorder.” While others may have responded to her voice by calling it ‘haunting’ or ‘wilted’, which is what the NSDA claims to have been responding to, what Lupita was intending to portray was a woman who had not only been emotionally traumatized, but physically as well. To reduce what Red experienced in the film solely to “emotional trauma,” even after watching the very physical violence she experienced all throughout the film, is not only dishonest, it is also harmful and negligent.

Most interesting about all of this, however, is that RespectAbility never released a statement or commented on Heath Ledger’s 2008 performance in The Dark Knight as The Joker. In fact, the only mention of The Joker from RespectAbility comes from this statement they released on Lupita where they make the claim that the issue with The Joker is “how the person looks.” His look, though, is not the biggest issue with this character. In his own words, Ledger told interviewers that he was “a psychopathic, mass-murdering, schizophrenic clown with zero empathy.” Yet, his approach to his role has been met with nothing but praise. Where Lupita is said to have been “connecting disabilities to characters who are evil,” journalists wrote for Ledger that “If Batman were the ‘light,’ Ledger’s Joker refused to counterbalance it by simply only playing the “darkness.’” And that “the late Australian actor didn’t just hit one note – his Joker had the full range of 88 keys.” Where Lupita is scrutinized for her work, Heath Ledger is named“one of the best” and “most iconic” method actors of Hollywood.

Perhaps it is Ledger’s death being so close to the release of The Dark Knight that make others venerate him and his role as The Joker the way that they do. Maybe it is the long connection comic book readers and superhero film watchers have to The Joker that draw them to Ledger’s take on The Joker. Or maybe it is what I believe is obvious: cisgender white men are never met with the intense and outright harmful vigor that Black people—especially Black women—are for what would otherwise be known, too, as “iconic” roles. The implicit misogynoir in hailing a white man as “one of the greatest” method actors while vilifying a Black woman for employing the same level of acting is transparent. The unwillingness to see Black art as something capable of going beyond the “good versus evil” dichotomy so often forced into Hollywood horror films while writers note that Ledger’s role as The Joker hit “all 88 keys” is very blatant anti-Blackness.

To be clear, there is a necessary conversation to be had about the way that horror, as a genre, is built off of anti-Black, ableist, and even often anti-fat caricatures. Laura Elliott does part of that work in her piece “What’s So Scary About Disability?” The horror genre has a long history of making many villainous characters disabled, which only further stigmatizes disabilities and those of us who are disabled. That is always a valid and necessary critique, and it is also not the critique being made here.

In the statement released by the NSDA, the executive director, Kim Kuman, says 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.” However, since the genesis of the Us promotion tour, Lupita has been clear that she is not only drawing from several different inspirations, including her “own experience with vocal injuries,” but that she is also not intending to portray a “creepy” voice as much as she is one that has been damaged and birthed from trauma. Most recently, she has discussed this in an interview on The View where she says that “the voice of Red is a composite of inspirations” and is “definitely a creation of my imagination.” The most careful and responsible critique, then, would be one that explores how the world responds to voices and bodies that are unlike their own. As a fat disabled person, this is something I focus most of my writing on. A principled critique, in many cases, is not one that attacks or undermines the intelligence of an individual—as RespectAbility and NSDA did by assuming Lupita did not understand what Spasmodic Dysphonia was—but rather makes note of a culture that responds to the manifestation of trauma or differentness with fear and uneasiness.

Disabled people have every right to critique ableism whenever we recognize it. We have a right to be cautious of how our bodies and experiences are portrayed by people who do not live with those same bodies or experiences. So this is not critique of my fellow disabled folks. However, it is a call to always consider the source of the critique. A critique made by an anti-Black Zionist and other white disabled people of a film with a lead cast that is fully Black must be thought over carefully. As previously stated, RespectAbility has been under scrutiny for their anti-Blackness several times before, and white people—even those with marginalized identities—so often are unable to separate their critique from their whiteness. I am pleased with Lupita’s swift and heartfelt response to concerns about the role that Spasmodic Dysphonia played in inspiring her voice for Red. It is refreshing to see a celebrity respond with so much care to efforts made in an attempt to hold them accountable. Still, I question the very source, or rather the origins, of these concerns and I caution others to do the same.

Originally penned for: DisVisibility Project.