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I am going to preface this piece by letting you in on a big little secret –– You are ALL going to be disabled someday; it’s just a matter of time, fate, and opportunity.
Thank you for lending me your ears (and eyes). Now we may proceed.
Amidst the throngs of crowds in colourful apparel gathering for a Pride march, it is rare, if ever, to spot an individual who is wheelchair-bound or visually impaired or disabled in a rather ‘obvious’, noticeable manner. And this certainly has nothing to do with the fact that I, myself, am visually impaired. I double-checked with those around me. This has more to do with a community that has been, at large, invisible in most social domains. While intersectional feminist movements purporting the rights of the LGBTQIA+ community, for instance, have accomplished a considerable feat in the last decade or so, the same cannot be said about the movement for the rights of persons with disability.
Why so, you may ask.
A very valid question indeed. One that I have often found myself asking, over and over again. The answer, though, is not as complex as we are made to believe. It’s as simple as the fact that most of us are physically, emotionally, intellectually, or mentally, unable to show up for ourselves; the largest minority world over. We’re just invisible.
Temporarily able-bodied as we all are, it takes a leg fracture and being on crutches to finally realise that most staircases do not have railings on both sides. Or that most restaurants in Mumbai alone, do not have ramps. Or that the disabled compartment of a local train is more dangerous for disabled women than the ladies’ compartments because even as disabled women we know that disabled men are not to be trusted. And with good reason, if I myself may say so. Most of them have been forced to live on the fringes of society, with a bare minimum understanding of social etiquette and behaviour.
As much as our identities may extend far beyond just our disabilities, we are forced to make our disabilities the core of who we are because of the difficulties we endure on a daily basis. Let us, for a second, imagine a world in which spectacles were not invented. I hate to break this to you, but in that case, 60% of our entire population would be disabled.
In a world where working professionals with disabilities often know that they are the affirmative action hire of their organization, to fill diversity quotas, I spoke to an incredibly accomplished woman named Virali Modi. A model, actor, influencer, content-creator, Ted-X speaker and disability rights activist, Virali is all she has ever wanted to be and more. She acquired her disability as a result of an extremely high fever, followed by days of being in a comatose state, the reason for which is yet unknown.
Virali is now paralyzed waist-down, and thereby, wheelchair-bound. Beware of any inspirational pedestal you may place her on, though, because she does not believe there is anything inspirational about doing mundane everyday chores. We are often forced to be inspirational because the world is inaccessible to us. If the world was systematically more accessible, none of what we are now considered to be ‘inspiring’ for would really be all that inspiring anymore.
Virali, I am so excited to be having this conversation with you, especially given that you have a visible disability, and I have an invisible one. But disability chatter aside, let’s begin with what propelled you to take up modelling as a profession?
I have wanted to be in front of the camera ever since I was little. In fact, having grown up in the U.S., I actually trained in modelling at the age of 14. I even signed a contract with an agency when I was 14. As fate had it, just a day before my first modelling gig, I developed a high fever, and was taken to the hospital. After clearing a series of tests to no avail, I eventually underwent cardiac arrest at the time of undergoing a second spinal tap, had a seizure that lasted 30 seconds, and was declared dead on the table.
After 3 attempts at resuscitation, the doctors finally found a minute pulse. I was put on a ventilator. That evening I awoke, and things seemed okay. The next day I was taken for another spinal tap, and that’s when I slipped into a coma. I was in a coma for a 23-day period and was declared dead twice. On September 21st, the doctors decided to take me off the ventilator. But on the insistence of my mother, they decided to keep it going until September 29th, my 15th birthday. On September 29th, at the exact time of my birth i.e., 3:05 PM, I opened my eyes. The doctors deemed it nothing short of a miracle. On October 5th, I was taken off the ventilator. I was breathing, alive, with all my cognitive skills intact. Except, I was paralyzed from the neck down. After years of physiotherapy and support from my mother, I regained movement waist-up.
The period of recovery was one of depression, alienation from people I thought were my friends and family. But I eventually overcame my sense of despair and decided to take back the life I always wanted to have. Eventually, I went on to become the first runner up in the Miss Wheelchair pageant.
Why was becoming a model so important to you?
It was just a dream I had. And I did not wish to give up on it, just because a wheelchair was now an extension of my body. The reason I was depressed for so long was because I never saw myself represented anywhere in films, books, media, or fashion. So I wanted to make that seem possible for others like me.
I have seen you create some incredible content online. Could you take me through your creative process?
First off, are you sure you can see the content?! (We both giggled about me being partially blind and using the word ‘seen’).
I assure you I can. Nowadays most things can be magnified. Or else, screenshot to the rescue (I responded).
Humour. That is my creative process. I love dad jokes and not a single one of my friends is spared the torture of it. (Neither was I). I love making people awkward because they often want to laugh, but think it’s disrespectful. What most people don’t get is that there is a primary difference between laughing “at” someone and laughing “with” them. When I crack a disability joke on myself, and they laugh along, it is the latter.
Having been in the modelling, film and content-creating industry for a while, do you think tokenism is still prevalent in the industry?
Most definitely so. When I would initially go for auditions, I would often be told, “You’re so pretty and so talented. Had you not had the wheelchair, we would have definitely cast you.” For some reason, the lead cannot be in a wheelchair; the lead’s best friend cannot be in a wheelchair; only a film about disability can have someone in a wheelchair. I would love to see a romantic comedy with the leads in wheelchairs, where the story is not all about them being in the wheelchair, rather about the romance and the comedy. It is only during photoshoots looking to have a “diverse and inclusive” cast that my wheelchair suddenly becomes an asset.
In one of your Ted Talks you mention 3 distinct instances when you were molested while seeking assistance from porters to get you on the train. And you said, “Who would believe that a disabled girl could be molested?” What precisely did you mean by that statement?
We are often either treated with sympathy or looked upon as some sort of divine body. When I said what I did, I was referring to the latter. There is a strict dichotomy in the way people perceive us. It’s either pity or inspiration porn. And neither is okay. Had the railways in India had infrastructure like ramps, I would not have needed help at all, and would therefore not have found myself in a helplessly vulnerable place. That is why I started a petition called “#MyTrainToo” in order to make the railways more accessible. It caught the eye of a railway official from Kerala and we collaborated to make 9 stations around the country wheelchair accessible.
You mentioned that you recently moved into an apartment of your own, where you live by yourself. Is your apartment wheelchair accessible?
Absolutely not. I actually love cooking, and my kitchen is not wheelchair accessible either. But you tend to find different coping mechanisms. For instance, based on the sound of the cooking food, and the smell, I can tell whether or not the dish is good to go. Able-bodied people will tell you it’s impossible because they don’t know otherwise. But if they were put in the same position as me, they would have figured their way around it as well.
Recently there has been a lot of discourse about what the right term or label to refer to people with disabilities is. One instance of it is to use the word “devyang” in Hindi, meaning divine body, instead of “vikhlang” in Hindi meaning disabled body. How do you feel about the use of “politically correct” terms when referring to people with disabilities?
I honestly just prefer the word “disabled” but it can be different for different people. I find it peculiar that when people specify their personal pronouns, I don’t see anyone going around correcting them as to what pronouns they “should” use. So, I don’t understand why people keep correcting us when we use certain terms to describe ourselves. Also, I don’t think changing semantics from vikhlang to devyang is really changing any of the ground realities of the disabled experience in India. If we truly are divine bodies, why then are we treated like second class citizens ? Why aren’t more able-bodied individuals speaking for our cause ? When I first moved from the U.S. to India, the state of affairs for disabled people in India horrified me.
I wish for a day when I can be referred to as just a model and not a “disabled model”. I wish for a day when doing ordinary things as a disablrd person isn’t anything inspiring. I wish for a day when people can accept that I can be pretty and disabled at the same time. I wish for a day when people stop looking at my wheelchair as a crutch and just look at it as a part of my body, an extension of me.
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