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In the Deaf community, the capital letter ‘D’ is often used to denote deafness as a culture, whereas the lower case ‘d’ signifies deafness as a pathology. This is an accepted and proper term to use when describing Deaf people, according to major organisations representing them.
As a medical doctor and a disabled person myself, I know that Deafness is considered a deficit in the medical model of disability, as we call it “hearing loss”. On the other hand, it’s called “Deaf gain” in the Deaf culture, to honour the social model of disability and respect the disability identity for its uniqueness, while embracing diversity in the process.
It was all gain for the American Deaf actor and director Troy Kotsur as he won the prestigious Academy Award for the best supporting actor in the film CODA (2021), at the recently concluded Oscars ceremony. As such, he made history as the first Deaf man to win an Oscar.
In addition, for his brilliant performance portraying a Deaf father in CODA, of the seven awards for which he was nominated, he won six. The heart-warming family drama has a non-Deaf protagonist: the parents (Kotsur and Marlee Matlin) and older brother (Daniel Durant) are all Deaf, and remarkably, they have been played by Deaf performers.
‘Cripping up’
Thus far, only three of 28 Oscar winners who have played characters with disabilities were actually actors with disabilities. The American war veteran Harold Russell, who lost his hands in the Second World War, was the first actor with a disability to win an Oscar, for The Best Years of Our Lives in 1946. Marlee Matlin, who was Kotsur’s co-star in CODA, was the first woman with a disability to win an Oscar in 1987, for Children of a Lesser God. Troy completed the hat-trick this year.
The journey towards inclusion and disability visibility has not been that easy. Keely Cat-Wells, a film agent who lost her job due to disability discrimination, launched the #DontDismissDis campaign in 2021. Eighty actors and entertainment industry executives signed an open letter criticising Hollywood’s prejudice and discrimination against disabled actors. They made public the ‘Hollywood Horror Stories’ – anonymous stories from disabled actors about how they were treated.
In the UK, the British Film Institute’s ‘Press Reset’ campaign addressed the negative effects of ableism and called on the film industry to improve how it works with disabled talent both backstage and in front of the camera. The English actor Sally Phillips, who has a child with Down Syndrome and scripted the documentary A World Without Down’s Syndrome, criticised actors for ‘cripping up’ – i.e. non-disabled actors taking on disabled roles – thus denying fair representation to actors with disabilities.
According to the 2021 Nielsen/RespectAbility study, which coincided with the 31st anniversary of the Americans with Disabilities Act, content featuring depictions of disability has increased by more than 175% in the last decade, but the majority of those roles were played by actors who didn’t have those disabilities.
The Australian singer Sia’s directorial debut Music (2021) was criticised for cripping up after she cast a neurotypical actor for the role of its non-verbal autistic protagonist. Disability advocates were specifically furious over the scenes in which the protagonist was put prone-restraint, a method of subduing autistic people that has resulted in several mishaps.
On the contrary, the 2020 Netflix documentary film Crip Camp: A Disability Revolution, which chronicled the Disability Rights Movement in the US, was hailed for its accurate representation of disability. It was scripted, directed and performed by people with disabilities.
OTT platforms like Netflix have provided opportunities for people to learn more about disabilities. Atypical (2017-21), A Quiet Place (2018 and 2020), The Good Doctor (five seasons) and As We See It (2022) all explore the complexities of life and relationships – as well as the rarely discussed issues at the intersection of queer sexualities and disabilities, and how they disrupt social ‘normalcy’.
Despite these in other parts of the world, Indian popular media still lags behind in correct representations of disability. The misrepresentation of disability in Indian films, web series and advertising is widely prevalent – and one of the main reasons why stereotypes about people with disabilities still persist in our society.
The young ghost in Netflix India’s Tamil eco-horror Boomika (2021) was said to have autistic features, but the symptoms portrayed onscreen resemble those of cerebral palsy. A similar portrayal of an autistic adult, played by Priyanka Chopra, was sketchy in Barfi! (2012).
Aanand L. Rai’s supposedly ‘weird’ experimentation on disability continued to misfire in Zero (2021) and Atrangi Re (2021). The former had three characters with disabilities (dwarfism, cerebral palsy and low vision) and failed miserably, even through the lens of cinematic prosthesis. The latter dealt with schizophrenia but only belittled mental health.
In fact, it was painful to watch the psychiatrist in the film mocking mental health conditions and initiating treatment that violated consent.
Also read: India Has a Long Road Ahead to Combat Challenges Faced by Persons With Disabilities
Diminished sense is not diminished life
Spider-Man taught us that, “With great power comes great responsibility,” but the superstars of Indian cinema only continue to mock people with disabilities. Amitabh Bachchan teamed up with the Reserve Bank of India (RBI) in one advertisement to mock a wheelchair as a sign of weakness and indirectly promoted the locking-up of senior citizens and people with disabilities.
For the ‘missing’ billion people with disabilities, a wheelchair is a sign of independence and empowerment – not tragedy. Nagesh Kukunoor, who won a National Award for best film on a social cause (Iqbal, 2005), used a similar trope in his City of Dreams 2 (2021), to reinforce the disability stereotype that those in wheelchairs are helpless.
Such attempts dehumanise and devalue the lives of wheelchair-users. It is the disabling infrastructure that we need to fix, not us. Even the visually impaired who are thriving using technology were mocked by an advertisement featuring Jim Sarbh on ‘The Internet is Blind’, which linked blindness with incapability. I promptly lodged a complaint with the Advertising Standards Council of India (ASCI), which led to to its removal from YouTube.
Similarly, Rohit Shetty’s Golmaal series continued to mock those with speech impairments until the Indian Stammering Association sued him. Actor Shreyas Talpade defended Shetty thus: “If these issues continue, then we will have to make silent films.” Messrs Shetty and Talpade could perhaps take a leaf out of the book of Siddharth P. Malhotra, whose Hichki (‘Hiccup’, 2018) sensitised the audience towards the prejudice and social stigma that individuals with Tourette syndrome face.
These filmmakers need to learn that speech and hearing are not necessarily superior modes of communication. In the American post-apocalyptic horror film A Quiet Place (2018), director John Krasinski cast 13-year old Deaf actress Millicent Simmonds for the character of a Deaf teenager in the film. She delivered an accurate portrayal of those who use cochlear implants, and also sensitised people and the film’s crew about American Sign Language.
Simmonds played the protagonist role in the sequel as well.
From Meri Jung
Films inspire you. The characters define you. As a nine-year old boy with polio, I was determined to fight discrimination after watching Anil Kapoor play the quintessential advocate Arun Verma in Meri Jung (‘My Battle’, 1985). What followed was a 35-year tradition of watching Anil Kapoor’s films on the first day of their release. Initially, it was the first day, first show, but after joining medical college, I had to adjust it to the first day, any show.
The characters in the films used the L-word (a derogatory term translating to “cripple” in English) repeatedly. There was an eerie silence during the intermission, as my children knew then of my disability activism. My nine-year old son was visibly upset. “The language is not good, papa,” he told me. Over the years, my children joined me as it became a celebration, after buying the music cassettes in advance and booking the show. The three-and-a-half decades of tradition came to an end in 2019, when Total Dhamaal came out.
In the film, after the intermission, my Bollywood superstar uttered those words as well. I have been bullied about my physical disability by people as high as a school teacher in my class. People have uttered the L-word as well. Only ten months ago, Anil Kapoor featured with his (real-life) daughter in Ek Ladki Ko Dekha Toh Aisa Laga (‘How I Felt When I Saw That Girl’, 2019). She delivered a very sensitive portrayal of a closeted lesbian.
Sitting in the hall, the scene from the movie flashed in my mind where Sonam Kapoor speaks to Anil for the first time about her sexual orientation.
“I would never go against you, dad, if this was just about me. But it’s about all those children who spend their entire lives in loneliness, craving just one word of understanding, whose childhood is spent trying to find some way, anyway, to get accepted, to fit in. Anyway, to make their classmates stop laughing.”
The Central Board of Film Certification has issued a circular on the list of objectionable words that are not to be admitted under any category of the certificate (including in regional films). Unfortunately, the list does not feature any of the foul words directed at people with disabilities. This was despite the rights of the Persons with Disabilities Act, 2016 being in force and including a provision for a penalty if “anyone intentionally insults or intimidates with the intent to humiliate a person with disability in any place within public view”.
For all these reasons, I was sceptical when I first learned of Suresh Triveni’s recent film Jalsa (‘Celebration’, 2022), which featured a child with cerebral palsy. But what I didn’t know was that the ten-year-old character of Ayush Menon was actually played by Surya Kasibhatla, a child with cerebral palsy. The reason I didn’t notice was because of Kasibhatla’s flawless performance.
Also read: ‘Jalsa’ – Solid and Motivated Throughout – Defies Expectations and Is a Must Watch
Never for a single moment did I think that the character was fake, and that is perhaps the biggest compliment, as he was pitched against three brilliant performers: Rohini Hattangadi, Vidya Balan and Shefali Shah.
Cinema is responsible for perpetuating stereotypes, and more often than not, people with disabilities are at the receiving end. Often, non-disabled actors portray disabled characters without understanding the disability. The stories that cinema narrates affect our individual life stories. Hollywood and Bollywood films – such as Me Before You (2016) and Guzaarish (2010) – have depicted quadriplegics as being dissatisfied with their lives, with real-world implications.
It is not just disabled people that have received the short shrift. Non-disabled viewers may leave the theatre assuming that all quadriplegics are unhappy and merely wish to die. In an interview, Vidya Balan said Jalsa was a celebration of life with its ups and downs. The same is true for people with disabilities: they are not ‘supercrips’ to serve as inspiration porn or who await your pity to end up being dehumanised.
Pay us, don’t play us
The title of the film CODA refers to the concluding note in a musical composition as well as ‘Child of Deaf Adults’. Either way, it represents a fitting culmination to highlight the struggle of performers with disabilities in the film industry. First, they are not picked to play roles of disabled actors on-screen; then, they are not consulted during production; and finally, when they do bag such roles, they are not paid on par with other actors.
In 2016, the Lux perfume portrait of Katrina Kaif by Bhavesh Patel won gold at the Goafest ABBY Awards. Uniquely, the photoshoot was the work of a born-blind photographer. Guided by Kaif’s perfumed scent, Patel proved what his mentor – Partho Bhowmick of Blind With Camera – had reportedly taught him; that a diminished sense does not mean a diminished life. (It also demonstrated that beauty isn’t restricted to the eye of the beholder.)
Patel was paid the industry standard and was treated with dignity by all stakeholders. After the shoot, he said, “VIP (visually impaired person) has become a VIP (very important person).”
Jalsa may also lead the way in films, as Surya Kasibhatla was also paid the standard for child artists without disability. We must follow Suresh Triveni’s lead for all future films.
This said, the Indian entertainment industry has a long way to go. If it really wants to be inclusive, it must start the disability discourse by, for and with people with disabilities. Be it with the script, the sets or the acting, people with disabilities bring the richness of their lived experiences to bear as directors, producers, script-writers and performers. This is all we need to make this world a better, more empathetic place for everyone, with or without a disability.
Dr Satendra Singh is the founder of ‘Doctors with Disabilities: Agents of Change in India’ and co-chair of International Council for Disability Inclusion in Medical Education. Views are personal.