Looking in from the outside, we oftentimes tend to pity those with a disability, avert our eyes after giving the wheelchair a long stare, get misty-eyed when a someone on crutches stumbles into the room, sympathetically compliment an autistic and use hushed tones to show we empathize. Bingedaily spoke to the youth in India who live with a disability and their voices ring loud into the silence: “Stop being patronizing!”
In the endeavour to normalize disability, the media unintentionally adopts a diametrically opposite behaviour, resulting in a pity party attitude. If your mind went “tut, tut, how sad!”, you’ve got the wrong tone. The last thing they want is to be treated as superhumans who are glorified for merely existing. These folks are tough, and ask you to buckle up and treat disability as it’s meant to be.
“Why is disability on-screen portrayed as happy, inspirational, cookie-cutter nonsense?”
“Why are we so afraid to portray authentic experiences of disability? Portray disabled sex on television? Cast disabled actors to play their own lived experiences instead of a non-disabled actor?” Anusha Misra asks. This 22-year old, Founder of Revival Disability Magazine had both sides of her brain affected by a stroke at the age of 9.
At Revival, the team aims to reclaim the first-person narrative of disability in India, with the aim to do away with the common inspirational porn narrative fed by prominent media houses. “The fact that disabled people simply exist, and are doing great things despite their debilitating disabilities is supposed to be impressive. However, such an idea only stereotypes these people.”
With a deep-seated fear to be herself due to her medical condition, Anusha says Revival was her breath of fresh air. “These stories gave me life, teaching me to accept myself and my body and not be ashamed.” Disability, according to Anusha does not hinder a person’s life, but ableism and inaccessibility do. “In Indian society, disability is seen as ‘bad karma’ - a ‘curse’ that the disabled person has carried on with them from their past life. This implies that the person’s very existence is ill-fated. It invalidates our existence.”
The infrastructure in India is highly inclined towards the non-disabled. Anusha having studied in institutions that have just one accessible bathroom in an entire building of 300 residents, says accessibility is not just the icing on the cake, but the entire cake itself. “What makes an institution accessible is a mixture of empathy, acceptance, active listening, inclusive education and plenty of understanding and accommodation to make it truly disabled-friendly.”
“Invisibility is something that is subtle yet present.”
“Education in institutions often exclude disabled students from their curriculum,” says Anusha, as she goes on to describe the invisibility that creeps in every time a disabled child gets bullied and gets called names such as ‘weirdo, freak’. “Invisibility is something that is so subtle yet so present. Everywhere you look, invisibility is curbing and silencing marginalized voices. So today I ask - are educational institutions no space for disabled students?”
While casual ableist remarks such as ‘Are you having a stroke?’ are uttered on global television, these are not taken lightly by her. As a stroke survivor, Anusha says it is hurtful as stroke survivors often have facial difficulties, crooked smiles, and have to go through many hours of exercises to correct it. “Both Bollywood and Hollywood have made movies where non-disabled characters have played disabled characters and their lived experiences. It’s like men talking about feminism!” Disability in India is often portrayed as people who are always happy, smiling, content, have carried out an awe-inspiring, successful feat. “Society thinks about a disabled person in terms of someone who requires constant help, a person whose fate they wouldn't wish on their worst enemy. Disabled folk, according to them have no sense of self, no sexuality, do not masturbate.”
When Anusha watched Indian Matchmaking, she says she wondered to herself what Sima Taparia would have said about her if she hired her as her matchmaker. “How would she describe me? Short, fat, and disabled? In other words, impossible to match with? As a disabled Indian woman, where would I fit in the traditional Indian matrimony scene if I ever decided to get married? I would probably be shunned.”
Anusha thinks the narrative of people with disabilities in India is confined to very limited space, women with disabilities are often de-feminized and sexuality and disability are considered a secondary issue. “While parents of disabled women start looking for potential partners as soon as they reach the age of 18, these women often end up getting married to partners that are abusive and take advantage of their disability. Sexual violence against disabled women often goes unreported in India. Indian parents want an able-bodied, tall, fair, skinny bahu for their entitled sons.”
“When a man comes into a disabled woman’s life, he is heralded and placed on a pedestal.”
Anusha’s relationships have involved dating non-disabled men and this young lady recounts how amusing it has been. “Some would perceive me with the wonder of how a woman could be disabled and beautiful at the same time. Some would feel good about themselves for dating a disabled woman, some would look at me as a child, and a ‘damsel-in-distress’ that needs protection and security.”
“When a man comes into a disabled woman’s life, he is heralded and placed on a pedestal: ‘You’re such a good man! You’re accepting her for who she is and overlooking her flaws! Shabash!’”
She speaks of how disabled people are alienated on an everyday basis and in conversations that involve dating and sex, the disabled are automatically excluded. “It is assumed that they don’t engage in sexual relations or date, for that matter. Our autonomy and decision making is not taken into consideration when it comes to deciding major factors for a workplace that we might be a part of. The disabled community has often been shunned, hidden, our struggles go unrecognized, our voices overshadowed by ableists and yet we persist.”
“Disability is a piece of entertainment for the media in India”
Pranav Sethi who was diagnosed with autism at the age of 27, says India is not meant for people with any form of disability. Autism, a developmental disorder which impacts the ability to communicate, seldom shows visible signs by which it can be pinpointed. “Our culture does not support disability nor accepts deviation from the normal.”
Speaking of the role of the media in reinforcing these ideologies in people, he says people in India are highly influenced by what they see on television. “The media instead of being sensitive to the plight of the disabled, treats it as a piece of entertainment. They value it for the money they make out of it. I urge people to replace pity and help with an understanding of our way of life.”
“Job opportunities are for the able-bodied in this country.” Pranav highlights this discrimination saying “If a non-autistic person struggles when it comes to finding employment, these struggles increase exponentially when it comes to an autistic person.” While office spaces are disabled-friendly, he wonders aloud what about hidden disabilities?
Emotional and mental abuse are part and parcel of the life of a disabled person living in the Indian culture, often causing them to leave their places of work for mental peace. One such incident was when Pranav tried to implement certain systems in a government office where he worked, to prevent the mismanagement of funds. “The staff clubbed together and continued to emotionally abuse me for days and it was a task getting back on my feet after such an ordeal.”
“What’s the hype about? Disability is natural.”
Kavya Mukhija, a 22-year old with AMC, a medical condition that causes lack of muscular development and growth, says she and others like her are more than just sources of inspiration. “We are not divyang, and would love to be your inspiration for the right reasons, such as our work and the ideas we hold.”
In the Indian society which strives to find someone who is sarvgun sampann (one who has all the good qualities in the world), disability can be a hindrance to this faulty mindset. “Society assumes if a person is disabled, they have a disabled heart too.” Brushing away this crap, Kavya says “We are very capable of giving and receiving love. There's a certain belief that partners of persons with disabilities are also their caregivers.” Highlighting the problematic nature of this problem, she says it reduces a disabled person’s existence to merely receivers of care.
Cultural ideologies hamper the comforts of a disabled. For instance, Kavya was made to get down from a wheelchair and walk, on a visit to a temple. All because the assistive device was not allowed into the premises. “Widespread inaccessibility exists in India in structural and attitudinal ways when it comes to disability.” Her love for travel, food, and adventure too is obstructed by the inaccessible environment in the country. “I have two choices, either to stay back home or have myself lifted through stairs.”
“Being disabled is natural, what's the hype about? There is nothing wrong with being someone's inspiration but what is so inspiring in merely 'living' a disabled life? How does the fact that I use a wheelchair to walk around inspire you to do better in life? We don’t go about telling non-disabled people that they inspire us because they can walk on their feet!”
“We don’t want special recognition.”
Diagnosed with a learning disability and autism, Rishabh Birla, 24, says the lack of acceptance, understanding and support, in India coupled with the myths and misconceptions, makes it a difficult ordeal.
“The media, which can be an important force in empowerment for people having disabilities, unfortunately, in India, is sympathetic. The print media writes about people with disabilities from the view of the 'medical model of disability', not from the 'social inclusion model' view. The media as well as society underestimates our talent, potential and strengths.”
Rishabh emphasizes on the fact that disabled people do not want special recognition. They look instead to be equal and empowered. This trickles into their relationships as well. “Relationships can be a roller-coaster and are hindered by our societal expectations. It does take more time and patience to understand a person with a disability, but is a unique experience.”