Yahoo Lifestyle Disabled Performers Advocate for Allies in Hollywood: ‘Inclusion Needs to Be a Movement and Not a Moment’
Having written about disability representation in Hollywood for several years now, I know that activism on the topic so often begins and ends with us. If you look at various award shows, and the few times Deaf and disabled people have won, it’s generally seen as a platform for deconstruction of how fervently they’ve advocated or represented the disabled community. Whether that was “Children of a Lesser God” star Marlee Matlin becoming the first Deaf woman to win an acting Oscar and giving her speech in American Sign Language or Louise Fletcher signing to her Deaf parents after winning the supporting actress Oscar for “One Flew Over the Cuckoo’s Nest,” disability on the awards stage brings up a variety of emotions.
It has remained with the disabled community to remind their able-bodied colleagues to help join in the fight for equality. So when Sebastian Stan went up to the podium to accept his best actor in a musical or comedy Golden Globe at the Jan. 5 ceremony for “A Different Man,” a movie in which he stars as a man with neurofibromatosis, it was doubtful he’d do little other than thank everyone and call it a day.
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Instead, Stan used his time to not only do the requisite thank yous, but also to advocate to destigmatize disabled stories — “Man” also co-stars Adam Pearson, a performer who lives with neurofibromatosis. “Our ignorance and discomfort around disability and disfigurement has to end now,” he said. “We have to normalize it and continue to expose ourselves [and our children] to it. Encourage acceptance. One way we can do that is by continuing to champion stories that are inclusive.” The fact is that 1 in 4 people in America have a disability, and the able-bodied majority can be allies — a critical component towards actively skewing perceptions on what disability in the movies can look like.
“I wish that we didn’t need such star power behind it in order to make [inclusion a reality],” says Emily Ladau, a disability rights advocate and author of “Demystifying Disability: What to Know, What to Say, and How to be an Ally.” “But at the same time, there’s something incredibly powerful about hearing someone say that inclusive casting and inclusive stories should be the norm.”
Stan is among a growing list of high-profile creatives attempting to speak to disabled representation. Another is “Wicked” director Jon M. Chu, who not only championed an inclusive and accessible set for wheelchair-using actor Marissa Bode, but also integrated universal design into the famed land of Oz, hiding discreet ramps that most able-bodied audiences wouldn’t notice but disabled viewers would.
Disabled rights advocates agree that it’s imperative for entertainment industry power players champion not only casting authentically, but also for disabled hiring in all elements of a film production. In 2018, during her best actress Oscar acceptance speech for “Three Billboards Outside Ebbing, Missouri,” Frances McDormand brought up “inclusion riders,” a provision or stipulation in a performer’s contract that at least a certain amount of the cast and crew on a production is diverse. Unfortunately, as the Los Angeles Times reported in 2019, adoption of inclusion riders remained more a symbolic gesture than one actually put into practice.
As Ladau explains, someone like Stan carries a presence because of his connection to Marvel and Disney through his role as Winter Soldier in the MCU, bringing legitimacy to the discussion. “If we don’t have the power of A-listers behind this work, so many people are going to tune it out. They’re going to say, ‘Who is this person? I don’t know who this person is, and therefore it’s not relevant to me or the media that I consume,’” she says.
And disabilities encompass conditions that occur as people age so, Lauda says, it only helps to have awareness brought to the subject now, by abled people, to prepare for the very real possibility of blindness and deafness, among other age-related health issues, as people get older.
The hesitation to come out as an abled advocate for disability is still prevalent though, much of it fueled by ignorance or the fear of saying the wrong thing. As Stan admitted in a 2024 interview with this author for Salon, he didn’t have much awareness of disabled issues before filming “A Different Man,” and learned a lot while portraying a character seemingly ostracized by society. “Those stereotypes, they’ve always been around, and that’s all people know,” said Stan. “Largely because there hasn’t been enough exposure for people to see things differently.” The actor said there still isn’t enough encouragement to have a meaningful dialogue about disabled issues. “We don’t have a lot of encouragement towards the kind of conversation we’re having right now,” he said.
“At this point, the gatekeepers have been one of our biggest problems,” says Eileen Grubba, a disabled actor and producer. Grubba says that agencies, producers and others are still very hesitant to admit their desire to advocate on behalf of disabled people, let alone finance or aid in getting projects greenlit. “They’re exploiting our stories to get themselves money and funding to pay their salaries, present whatever they want to the industry about all the good they’re doing for this community, but they’re not opening doors for those of us who could actually change the game out here,” she says.
High-profile actors and directors certainly have the power to change things for disabled representation. If the argument is disabled talent isn’t bankable, the inclusion of a talented actor or director can cushion having an unknown in the feature. A prime example: the 2019 feature “The Peanut Butter Falcon.” Though that film starred actor Zack Gottsagen in his debut feature, it also had established performers Dakota Johnson and Shia LaBeouf in supporting roles. “If George Clooney is doing a movie and he says, ‘I want Eileen to play my leading lady,’ guess what’s happening? I’d be playing that leading lady and if people object he could simply snap his fingers and they could be gone,” says Grubba.
Director Benjamin Ree, who helmed the 2024 Oscar-shortlisted documentary “The Remarkable Life of Ibelin,” had some experience with disability. He has several friends and colleagues with various disabilities, including wheelchair use. But none of that went into his desire to cast his film with disabled voice actors, specifically, but to honor the film’s subject, Mats Steen, who had a rare disease, Duchenne muscular dystrophy, that confined him to a wheelchair. He died at age 25 in 2014. “We thought that he would have wanted us to give the job to a lot of actors with disabilities in this film,” Ree says.
For the director, it wasn’t just about finding disabled talent, but finding the best performers for the role, which happily dovetailed for the film. Ree explains that the film did standard casting for the voice performances, as well as utilized an agency that specializes in disabled performers. Those who have cited the challenges in casting disabled talent have often cited a perceived lack of disabled performers to work with, which Ree says was not a problem they had with “Ibelin.”
The question is whether Hollywood will take any of Stan’s words to heart. Nearly everyone who spoke to Variety says they are definitely skeptical about this being more than just a warmhearted cultural moment.
“Inclusion needs to be a movement and not a moment,” says Ladau. “We have really focused on the moments and we always look at the moments as a win … But I think that people just love a good sound bite and then all too often move on from that sound bite to the next interesting thing. If the next interesting thing is not relevant to disability inclusion, then we go right back to being at the bottom of the barrel.”
According to casting director Chad Darnell, it’s hard not to look at this moment and not think about “CODA’s” best picture Oscar win in 2022, as well as Deaf actor Troy Kotsur’s supporting actor win for his performance as the father in a Deaf family with a hearing daughter. Matlin also starred as the mother. Though the movie put an eye on the Deaf community, projects centered on disabled communities are still few and far between, and now with the entertainment industry tightening its collective belt after COVID shut-downs, the 2023 strikes and global economic uncertainty, such stories may seem too risky.
But there are options. As Ladau explains, top-level creatives can make a point of having disability representation be part of any future film negotiations. Much like the inclusion riders McDormand talked about, talent can mandate disability inclusion in their riders. “I would love for A-listers to not commit to a role unless they know that there’s authentic and inclusive casting,” she says. “I understand that perhaps that’s a big ask, but I also think that they are in the powered, privileged position to make that a reality, and sometimes it takes people with that level of clout and pull to put their foot down and say, ‘I’m not participating unless I see tangible action and change.’”
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