As a child, Jameela Jamil suffered from partial deafness and was in and out of hospitals with ear infections and labyrinthitis, the viral infection that impacts balance from your inner ear canal.

Today, the star of The Good Place has around 70% hearing in one ear and 50% in the other, which is why she recently turned down a role as a completely deaf woman in an upcoming movie. 

“I said it wouldn’t be appropriate for me to take that role and they [the film company] should find a brilliant deaf woman to play that role,” Jamil told the Press Association. “I think you have to make those choices and not be too greedy and make space rather than take space… I don’t want to be part of erasure.” 

She added that the debate about whether or not actors should take roles portraying an identity that they do not themselves share is misguided. “I think it’s a very tricky one,” she said. “I can understand where people are coming from when it comes to suspending disbelief but I think the thing we should actually be fighting for is more roles for people with disabilities and more roles for LGBTQ so there aren’t just five a year and then those get taken by big names.” 

“That’s the thing all actors should be banding together in support of,” Jameela added, “changing the situation where more scripts are being written where someone’s disability or someone’s sexuality is no longer the main theme of the film, it’s just part of their story but not the full story of the whole film. And that’s the big change that needs to happen. And then we won’t need to worry that we’re stealing the scarce amount of roles from other people.”

Jameela’s comments are a reminder of just how far Hollywood has to go when it comes to representation of deaf communities, both on and off the screen.

For every A Quiet Place, which featured a deaf actress (Millicent Simmonds) in the role of a deaf girl, there’s a La Famille Bélier, a 2014 French film about the child of deaf parents, which featured hearing actors in the deaf roles. In the age of silent films, The New York Times noted, deaf actors received as much work as their hearing peers. But in recent years deaf actors have struggled to find roles in Hollywood, even and especially in the films that expressly deal with stories around hearing loss.

It’s not just in front of the camera that deaf people wrestle with representation. Access is a problem that plagues the wider reaches of the film industry, in particular, the way movies are experienced in the cinema by ticket holders.

Closed captioning is integral to deaf cinephiles enjoying the movies they pay good money to see, but the technology is not available in every cinema and, even when it is, it can be cumbersome, unreliable and in dire need of an upgrade. As Nyle DiMarco, the male model and deaf activist wrote after he was forced to walk out of Black Panther when the cinema’s captioning machine stopped working, the experience of seeing a movie in a cinema as a deaf person is a humiliating one.

“The device was a nuisance to use, embarrassing to have parked in front of my seat in a movie theater, and infuriatingly undependable,” DiMarco told Teen Vogue. “But it was the only way the theater offered for me, and millions of other viewers like me, to access the movie.” 

Before Black Panther, DiMarco hadn’t set foot in a movie cinema in five years because of the indignity of being forced to use these captioning devices that, at best, give the user a headche as they attempt to shift their eyes between the captions and the moving images because the device obscures the lower half of the screen, and at worst simply don’t work.

DiMarco prefers it when cinemas print the captions directly onto the screen, a “much more accessible and enjoyable” experience for deaf cinemagoers but one that has been largely fazed out in favour of captioning devices. Either that or Netflix, whose entire inventory is close-captioned. This isn’t even beginning to get into the problem of the lack of captioning on in-flight entertainment and television.

On-screen captioning went out of fashion in part because people argued that these subtitles “degraded the viewing experience”, as Dimarco put it. People found them distracting and unnecessary. To which DiMarco has said: “I call BS.” Nobody finds fault with captions when they’re watching a foreign film. Go to a cinema in a country where they don’t dub Hollywood films and you’ll find every single movie captioned underneath. 

“Captioning enhances the viewing experience,” Dimarco wrote. “It should be a standard part of any filmed media, and not as an afterthought, but as a part of the ultimate golden standard of universal design.”

Things are changing. Slowly. People like Jamil and A Quiet Place’s director John Krasinski are advocating for deaf roles to go to “brilliant” deaf actors. In the US, the 2018 Americans with Disabilities Act has mandated that all cinemas offer captioning devices for every digital screening.

At last year’s Oscars a short film about a deaf child picked up an Academy Award and shone a spotlight on deaf awareness. “Our movie is about a deaf child being born into a world of silence,” writer and star Rachel Shenton said in her acceptance speech. “It’s not exaggerated or sensationalised for the movie. This is happening… Deafness is a silent disability.” 

In Shenton’s speech she referred to the millions of deaf children around the world. In fact, there are nine million people with a hearing loss in the UK, or almost 20% of the total population. In the US, the number is about 15% of the population.

That’s a huge percentage of the population that is not currently represented or serviced by the film industry. 

Making space for the deaf experience both onscreen and off needs to be the next frontier for Hollywood if it wants to make sure that its current focus on representation is more than just lip service. And so that, in Jamil’s words, “we can continue to see on screen what we are living amongst in this world.” 

Images: Getty