“Being Deaf Is Very Different From Being DeafBlind” Controversy Over Helen Keller Casting
I cover disability in entertainment, advertising and media.
A Quiet Place star, Millicent Simmonds, is set to take on the role of DeafBlind American author, disability rights advocate, political activist and lecturer Helen Keller in Helen & Teacher, which is an upcoming film about Keller's relationship with Anne Sullivan, her translator and companion, according to The Hollywood Reporter. After Simmonds posted the news to her social media platform, it sparked controversy within the Deaf, DeafBlind and Disabled communities due to Simmonds being Deaf but not DeafBlind. In a video response to the news posted by Loni Friedmann, who is DeafBlind, and works as an ASL instructor with her own business teaching ASL classes online; Functional ASL, Friedmann said "Deaf people do not understand what it is like to be DeafBlind". The unauthentic casting conversation within the entertainment industry is not a new one, movies such as Me Before You, The Upside, Theory Of Everything, and Come As You Are, are among those that include disabled characters played by actors without the lived experience. Mary Harman, a deaf Latina disability rights expert and activist says, "Unauthentic casting is an issue because of the significant harm it causes; this is both covert and overt. When people consume media — whether it's movies, TV shows, or advertising — perceptions and world-views are created. It's incredibly important that those perspectives are as accurate as possible. The disability experience is a spectrum. People with disabilities, including those who are deaf, DeafBlind, and low vision, face a unique set of barriers and struggles and adopt distinct cultural elements. When somebody plays a character with a disability that they do not have in real life, not only is an authentic portrayal impossible, but this also creates narratives that are false and harmful, regardless of intent or framing. The magic of storytelling can highlight the unique, rich cultural experiences of disability. However, this gets lost when disability is inauthentically portrayed." The entertainment industry holds incredible power. The U.S. media and entertainment (M&E) industry is the largest in the world. At $717 billion, it represents a third of the global M&E industry. The U.S. industry is expected to reach more than $825 billion by 2023, according to the 2018-2023 Entertainment & Media Outlook by PriceWaterhouseCoopers. Venesse Guy, who identifies as she/they and is a Black mixed DeafBlind woman. Is an astrologer and is the founder of AstroWoke, which provides ultimate access to astrological content in ASL, stated that “a performer’s lack of lived experience, especially as a DeafBlind person, may obfuscate the audience’s cultural understanding instead of enlightening them. It may give people the impression that DeafBlind actors do not exist, or that DeafBlind people can’t represent ourselves. We should provide authentic representation to uplift our DeafBlind community. Roles like this are employment opportunities for DeafBlind people and they can open doors toward the future. For young DeafBlind members, having accurate representation and role models would immensely impact their lives and boost their self-esteem. We should be given more opportunities to show our identities and community. Conscious casting should be implemented and actively acknowledged within the Hollywood environment.”
“We should interrogate and delve into the discrepancy between representation behind the camera and representation in front of it.” - Venesse Guy Harman says "The media harnesses immense power in normalizing things, including the disability experience, which is an integral part of the broad spectrum of humanity. 1 in 5 people in the U.S. and over 1 billion people worldwide have some form of disability. That's approximately 15% of the world's population. Yet, the stigmatization of people with disabilities persist. I believe the media has played and continues to play a significant role in this, in large part due to how we are misportrayed to mainstream society/audiences. Committing to inclusion on all fronts within the entertainment industry can go such a long way in addressing that." Stuff You Shouldn’t Say To Disabled People 3 Ways Disability Culture Has Been Changing I’m Right And You’re Wrong: Social Media Sins
Simmonds is Deaf, and her talent, skill and global success have been big wins for the industry and Deaf community, but should the casting of this project have been conducted differently? Friedmann commented “having a DeafBlind actor for a DeafBlind role shows the most authentic perspective because only they know the lived experience. People get a lot of their perspectives from characters in TV and movies, so, it’s important to have the right people for specific roles.” Friedmann provides various clear examples:
Deaf roles for Deaf people.
DeafBlind roles for DeafBlind people.
Black Deaf roles for Black Deaf people.
Indigenous Deaf roles for Indigenous Deaf people.
People of Color Deaf roles for People of Color Deaf people, and so on.
Similarly, Harman say's, "I believe production should have committed to ethical casting. To me, that means bringing onboard DeafBlind individuals from the get-go, searching far and wide for blind and DeafBlind talent, and casting actors who possess the authentic lived experiences of the role. DeafBlind individuals must have an active involvement in all aspects of production."
A story about Helen Keller seems like a step in the right direction. Hollywood is beginning to highlight disabled lead stories, stories about disability culture and history. Whilst this is an important direction for Hollywood it must be taken with caution, Guy says “it is such a noble moment that they have decided to make a film about Helen Keller’s life. However, the character Helen Keller is outdated due to whiteness, privilege, and elitism. If we are retelling her story today, we should seek to recognize and celebrate the diversity in our DeafBlind community and the movie's result would ultimately enhance.” Harman also mentioned, "while it's usually great to see movies centred around people with disabilities, I think Haben Girma, John Lee Clark, and other DeafBlind activists have done an excellent job of explaining how this harm isn't as obvious to laypeople. For instance, to the entertainment industry, it seems there is only one DeafBlind story to tell: Helen Keller's. The danger in this is it reduces the experiences of DeafBlind people to a single story. It's important to consider the full spectrum of DeafBlind contributors, especially DeafBlind people of colour." Hollywood still has a long way to go before it can be deemed equitable by many communities. Guy says “the entertainment industry could be more inclusive by looking at who is on-set, in production meetings, and behind the camera. Instead of sidelining the DeafBlind community in the hiring and casting process, they should be aligned and merged into the crew, or brought in as casting consultants. We would feel more normalized and confident by being included in producing. Directors and producers may view hiring interpreters, Certified Deaf interpreters, or accessible resources to smoothly communicate with DeafBlind people as obstacles. However, following the American Disabilities Act (ADA), everyone should know that communication access is a legal right. It is easy to accommodate disabilities and it’s the right thing to do. The entertainment industry should be held more accountable from the inside, instead of marginalized groups doing the labor. Harman wants to "see more roles played by disabled actors, and that disabled actors are not limited to characters with disabilities. Take Lauren Ridloff's role as Makkari for instance. Makkari was initially a white hearing man. When you take disabilities and other identities out of the boxes society put them in, possibilities are endless."
Harman also believes a significant reason we continue to see people with disabilities miscast is the lack of people with disabilities among writers, directors, producers, and others involved in the process. "Reversing this trend will probably result in more authentic portrayals."
There is often the misconception that DeafBlind, Deaf and Disabled talent is not easy or possible to find, to this point Guy says “performers can be found by networking through the Deaf community, there are talented DeafBlind people out there hoping for opportunities like this. The Deaf community is truly small, so imagine how small DeafBlind community is. A Deaf actor accepting a DeafBlind role just shows there is still a huge lack of support from the Deaf community towards DeafBlind individuals. [Another misconception] about the DeafBlind community that we cannot see at all. In reality, there is a spectrum of DeafBlind people and how we cope with our journey. So again, authentic casting is the key to helping society understand who DeafBlind people are, and how to accommodate us more effectively. Audiences should be exposed to more authentic portrayals of people with all disabilities, including DeafBlind people. ”
In addition Guy mentions “some Deaf (and hearing) people will overshadow DeafBlind people if an opportunity comes their way. Accessibility is a large part of this lack of representation both in front and behind the camera. Harman says "captioning isn't as widespread as one would think; trailers, interviews, and other forms of content put out by the industry need to be accurately captioned."
In addition to authentic representation, accessibility and diverse stories, we need intersectionality. Harman mentioned, "many people with disabilities adopt multiply-marginalized identities, such as Black deaf, Latinx, and DeafBlind people. That said, it's important to make casting decisions while taking into account multiple identities a character has."
Progress is being made, but we must remember the effects unauthentic portrayals have on a greater level, Harman says "the effect is very real and lasting. In essence, every time people with disabilities are miscast, other creators are sent a message that it is okay to do the same. Thus, false and harmful narratives are created for the consumption of mainstream society. The impact of this can be devastating. It perpetuates disparities in employment (in 2020, 17.9% of persons with a disability were employed compared to 61.8% of people without a disability, according to the U.S. Bureau of Labor Statistics) and subjects our communities to oppression in all corners of society. The disability community is not a monolith. The disability experience is a spectrum; being deaf is very different from being DeafBlind."
To build a more inclusive industry for everybody including DeafBlind talent, Harman says "it must be made clear in casting calls that DeafBlind talent is wanted and sought after. You will attract DeafBlind talent. DeafBlind communities will also be sure to advertise the casting call and reach out to talent they believe should consider auditioning."
Some key takeaways and final thoughts by Guy and Friedman. Guy says “unpacking your sighted and able-bodied privilege is the key approach to this whole controversy. Don’t be too attached with your privileges, share them with us so we can all succeed together. How can we thrive without being acknowledged? How can we build a strong foundation and structure of community alone? We need non-DeafBlind people to recognize us. We are complex humans. Stay open and listen to a different array of DeafBlind and BIPOC.” “Being inclusive can take extra work and time, but if a movie wants to tell a DeafBlind story it should not be without us. In the end I think the movie would be better, it would open the connection with DeafBlind creatives, and it is worth it.” - Friedmann