Flirting. Heartbreak. Clumsy first dates. Matrimonial sites. Studying for three degrees. Salsa classes. The coming-of-age story of a young woman who began losing her eyesight at 15.
By Nidhi Goyal | Grist Media – Wed 29 Jan, 2014
Like most Indian urban teenage girls, my love life revolved around the stars of Bollywood. I had countless celebrity crushes growing up. The one I remember the most was Abhishek Bachchan, who I was 100 percent sure I was going to marry.
When I was an undergraduate student working towards my B.Com Degree at Narsee Monjee College of Commerce and Economics in my hometown of Mumbai, it turned out that college was only five minutes away from Abhishek’s house. Which meant, of course, that passing by his house became a morning ritual for me and another Bachchan-crazy friend of mine. In the way that some people go to temples, we went to Jalsa – abode of the Bachchans – and pestered the security personnel to tell us the timing of his coming and goings. To the dismay of the guards, we once even followed his car.
When I was 15, I was diagnosed with retinitis pigmentosa, a degenerative eye disorder. By the time I was in college and my love for Abhishek was in full swing, so was the loss of my eyesight. As I dropped off cards on his birthday and wrote him love poems, my ability to see was steadily declining. Of course, this made little difference to my love for Abhishek, who I had only managed to speak to about twice: instances where all I could splutter out was a request for an autograph. But when it came to the less tongue-tied, non-celebrity crushes on classmates and friends, my eyesight began to make all the difference.
The writer Nidhi Goyal. Photo credit: Nidhi Goyal
Teenage crushes are, by and large, a cause of anxiety. You spend days pondering over what to wear so he notices you, how you can stop him from spotting that new splotch of acne on your face, and why oh why is he always talking to the girl with that L’Oreal-ad-type hair? For me, it was a wholly different ball game. When you can’t see, all social interactions become more difficult. Imagine trying to distinguish between the one hundred different voices of your classmates. Of never fully knowing whether someone is smiling at you or not. Of not realising you are standing next to the boy of your dreams.
Until I lost my eyesight, I never realised just how many aspects of romance begin with vision. You look at someone, you make eye contact, and – as the story goes – sparks begin to fly. I, however, needed to discover new ways to make sparks. As a teenager, it was so frustrating for me to listen to a guy with a nice voice and not know what his face looked like. Was he looking at me? How was he looking at me? I constantly had an added layer of anxiety when I was trying to navigate my attractions and crushes.
As a sighted person (what people who are visually impaired call people who have their sight), for example, if you notice the object of your affection standing at one end of the hallway, you can always find an excuse to stroll past them. But I was missing out on all these small opportunities; small opportunities that eventually made a big difference. Thankfully, I had a group of fantastic girl friends who were determined to get my sparks up and sparking! They would make an effort to guide me in the direction of my latest crush (both with and without telling me beforehand), and then when we approached him they would tap me and say, ‘Hey Nidhi, isn’t that your friend?’ By this time, most people knew I had almost completely lost my sight, and the guy would be compelled to acknowledge my presence.
I always wondered how much of that recognition was desire and how much was simply obligation.
* * *
The idea of people with disabilities as asexual beings who have no need for love, sex or romantic relationships is ridiculous. However, it is one that has a stronghold in most people’s minds. As I grew into my 20s, the absurd anecdotes of me trying to bump into my crushes in college hallways developed into the more serious recognition that because I was blind, I was very rarely seen as a potential candidate for a relationship, or even a date. I remember a male friend of mine from a very conservative, traditional family, who was explicitly forbidden from inviting any of his women friends home. He told me on the phone one day that his mother had cooked a delicious vegetarian dish, and in response, I joked that I would love to come over and try it. He replied with, “Yes, sure. You are always welcome.” I was shocked, then I realised what had happened. I was a woman with a disability who would never be a prospective candidate, so I didn’t, in his family’s mind (or in his, for that matter) count as a ‘woman’.
It wasn’t a malicious act – my friends love and support me a great deal. But it’s ingrained so deeply in people’s mind-sets that disability and sexuality don’t intersect that it reflects in their behaviour, even if unconsciously. People throw around words like “normal”, instead of “nondisabled”, without thinking twice about it. Others feel like they need to offer pity and charity, because they assume that people with disabilities can’t support themselves. I think before we even get to the idea of dating, we need to break down these barriers in people’s minds. One thing that’s done frequently by the international disabled community is to refer to nondisabled people as “temporarily able-bodied people”, or TABs. I love this construction, because it serves as a reminder to nondisabled people that disability is not something ‘other’ or alien, and that most probably, at some point in everyone’s life, they will live with impairment.
The writer on holiday. Photo credit: Nidhi Goyal
When it comes to relationships in India, the ultimate tension, worry and goal is almost always marriage. And because one individual’s marriage – or its absence – is often seen as a family or community concern, there was no dearth of opinions when it came to the question of “marrying off” a blind girl. I remember when I was 14 or 15 and my disability was first diagnosed: one of my father’s close friends advised him to hide my disability while they could and get me married by the time I was 18. The assumption, of course, was that once I had fully lost my sight, no one would want me. My older brother, who also has a disability, was once advised by a family friend that he could “marry someone from a slum”. This is not to imply that someone from a slum is somehow worth less, but it’s telling of mind-sets when people place the disabled alongside the economically marginalised. Society views the two groups in the same category: not good enough. I’m fortunate to have parents who are really open-minded, and who have never forced my brother or me into a relationship. But not everyone is that lucky. Instances of people with disabilities, and in particular women, hiding their impairment or having to compensate for it with large dowries, are a frequent occurrence even today.
It’s not that I’ve ruled out the idea of marriage; I just want to do it on my own terms. Two years ago, I set up a profile up on Shaadi.com. A nondisabled friend and I would often browse through the site together looking for prospective grooms. But I quickly learned that if I – as a woman with a disability – expressed interest in a nondisabled man, it was not received well, and was sometimes even seen as offensive. However, in the six months that I had my profile up, I received about a dozen calls expressing interest in me. Now on the surface, this shouldn’t be surprising. I have a smacking profile as far as the tick marks go: I have three degrees, a ‘good’ family background, and a ton of interesting hobbies and talents. But what all the interested callers had failed to notice was my disability. Oh, and in case you were wondering, there was a whole paragraph dedicated to my impairment on my profile.
I remember this one educated, progressive man who called to say I’d be perfect for his son, but from what he was saying, I guessed he hadn’t read about my disability. I clarified this with him because it had happened too many times by then. He paused. People generally go into shock, because they don’t believe that someone who’s disabled will even be on the website. They can’t connect the picture they’ve conjured up of the well-educated, outgoing girl from the profile with someone who’s also visually impaired. So after a few moments of silence, the man said, “Really?” So I repeated myself: “Yes, I can’t see. I’m blind. Is that okay?” He said, “No, no, beta, I think uh…ya…good luck,” before he hung up.
But it wasn’t just men on the Internet who thought I didn’t deserve any better. I remember once my sighted woman friend and I chanced upon a profile of a man who didn’t seem particularly special: his education was very basic and I earned far more than him. I was shocked and hurt when my friend, who is from a socioeconomic background similar to mine, said she wasn’t interested, but that I should definitely consider him. This was while she, on the hand, was looking at men who earned six times her income.
When it comes to disabled people getting into relationships, the argument that “beggars can’t be choosers” is often used. In a country like India, where all women are devalued in comparison with their male counterparts, women with disabilities are seen as existing on the lowest rung – or on the cheapest shelf – of the marriage market. While it is not uncommon for disabled men to find nondisabled wives, disabled women are told they should feel lucky if they get anyone at all. Not to mention having to find ways, monetary or otherwise, to compensate for their impairments. Through my various exploits on Shaadi.com and looking at the kind of men who’d be “willing” to “take me”, this thought in my head was always crystal clear: I’m no beggar, and even though I’m disabled, I’m not going to marry just anyone.
* * *
A real shifting point in my understanding of how the sexuality of disabled people is perceived by society came in 2011 when I joined Point of View, a media-based women’s rights platform in Mumbai. At the time, Point of View, together with feminist organisation CREA, was working on an initiative that was right up my street – they were creating the first ever online resource on sexuality and disability. The timing was perfect. I had wanted to work with women with disabilities for a while now, and co-authoring the website Sexuality and Disability was the perfect way to do it.
I threw myself into the project because it reflected the realities of my life: I understand women and I understand disability. As someone who acquired a disability, I understand what it’s like to be disabled and nondisabled; where the two clash and where they overlap. Women with disabilities in particular have a layered experience; I’ve found that neither disability rights groups nor women’s rights groups fully understand the intersection of the two.
Through my own life experiences, I already knew about the societal prejudices that existed around disability. However, during my work at Point of View, I realised that I, myself, had internalised some of those prejudices. Before joining the project, I always had a sense that if I ever entered a relationship with a nondisabled man, the relationship would be somewhat unequal because of my disability. But after meeting so many women with disabilities, and seeing how they deal with their lives, this idea began to change. I realised that in a relationship, a wheelchair or a white cane is not the only thing you bring to the equation. You bring your personality, your quirks, your stories – and all those are a lot more important. Working on the website and meeting these women allowed me to understand that when I enter a relationship, the fact that I sometimes need a little help will not make the relationship unequal.
While working on the website, something else I realised was that oftentimes, people with disabilities had barely had any interactions with people of the gender they were attracted to. During this time, I’d befriend people with disabilities, and go out with them for coffees or a lunch to get to know them better. And I remember this one visually impaired guy in whose level of confidence I noticed a huge change over the time that I knew him. So I asked him once, “Listen, what’s changed?” And he said, “You know, before you, I don’t think any woman – forget for dating – even wanted to go for a coffee with me.” He had never gotten the opportunity to just hang out with a woman before. And the fact that I went out with him, even as friends, brought about this change. It’s incredible just how much regular socializing disabled people miss out on, and how the smallest thing can make the biggest difference.
I’ve had strange conversations with nondisabled friends, though. Around the time I was working on the Sexuality and Disability website, a very educated friend asked me what I was up to, and I explained I was involved with a website looking at how people with disabilities were not asexual beings, and had the right to be in a relationship. I was stunned by his response, which was: “Oh, so now you are going to force us to have relationships with disabled women?”
Most people still really don’t get it.
* * *
Remember all those movies that you were convinced were going to be the story of your life? Was it You’ve Got Mail? Kuch Kuch Hota Hai? Or even the glamorous life of a Disney princess? When we fall in love, we often use the scripts we find in popular culture to guide us, whether we are conscious of it or not. But disability tends to be invisible in pop culture. Think about it. How many films have you seen that featured a disabled romance? How many blind actresses doing salsa (which is a hobby of mine)? How many heroes in wheelchairs swivelling around to a song like Dhinka Chika? When we do see people with disabilities onscreen, they’re largely portrayed as people who need caregivers or pity. For example, Sanjay Leela Bhansali’s Mann starring Manisha Koirala and Aamir Khan has the female protagonist meet with an accident, and she ends her romance with Aamir’s character because she feels as a disabled person, she isn’t good enough for him any more. In the end, there’s a teary reunion and he accepts her in spite of her disability. Aamir’s character is exalted for this, while Manisha’s character is not seen as an equal in this relationship at all. Why must nondisabled people who ‘accept’ people with disabilities be glorified?
With these questions swirling in my mind and no pop culture precedents that teach a blind woman how to love, or even date, a nondisabled man, I’m constantly reinventing my own ideas of romance. For example, what should I be doing to make myself attractive to a man? To figure this out, I put this question to my visually impaired male friends, who told me that attraction could spark from the simplest of things: a girl’s perfume, the smile in her voice, or just the way she shook hands. And then it occurred to me that they were no different from other men who might have a particular type or prefer a certain look. With disability in the picture, you just have to be creative. And in my opinion, the onus of creativity doesn’t need to always fall on the disabled person!
Like in any dating saga, there are always some funny, some sweet, and some utterly bizarre moments. The disabled dating world is not always that different. I recall a hilarious story involving two visually impaired friends of mine, who had gone on a date to a fancy Mumbai restaurant at which you could smoke hookahs. It was their first date, and at the restaurant, they shifted tables three times to find a spot that was cosy and private. They were happy, chatting, and holding hands. The world around them soon melted away. When the hookah’s coals had to be stirred or the flavour replenished, they didn’t have to give it a thought: a waiter would simply materialize at the right time and take care of it.
After several visits to their table, the chatty waiter who had been attending to them began to make forays into their private universe, and attempted to join the conversation. And at some point in the night, when the boy asked him to keep a look out because they’d be ready to order their dinner in 5 minutes, the waiter said, to their intense embarrassment, “Aap chinta mat kariye, main door tab se aap hi ko dekh raha hoon (You don’t have to worry, I’ve been watching you from afar for a long time).” The romance of the evening was effectively shattered.
Or take this sighted woman friend of mine, who told me a story that really made me pause with wonder. She was on a date with a visually impaired man who was holding her hand and said to her, “Nice nail paint, but you could have used a coloured one.” And she gasped and asked, “How the hell did you know?” – because it was true, she was wearing a transparent coat of nail polish. He responded by telling her it was possible to distinguish the two by feeling the density; if the paint felt thicker, it was coloured. Just like my friend, I was amazed at this small moment in a new romance that showed just how wonderfully creative dating can be.
I’m sure that like me and my friends, people across the world with disabilities navigate relationships and love in tons of interesting, unique ways. The problem is that because mainstream popular culture tends to be run by able-bodied individuals, we hardly get to hear about these romances. And as a result, both disabled and nondisabled people end up believing that the only way love happens is between two able bodied, typically heterosexual, individuals. And worse, society then stigmatizes people who don’t fit into those boxes.
Love, sex and romantic relationships are for everyone, whether or not you have a disability. It’s really high time people started accepting that.
* * *
Today, I’ve left my dreams of Abhishek far behind. I’m 28 years old, and studying at the London School of Economics for a Master’s Degree in Development Studies. I want to look at issues of disability and see how they fit into a wider context of global development. Sadly, most Development Studies programmes still don’t offer a disability component. But I’m persevering in trying to find a way to incorporate my own understanding of disability into the sorts of work we are doing at the university. It’s exciting and fulfilling, and my earlier determination to find a husband – preferably from the ilk of Bollywood – is a thing of the past.
Having worked on the issue of sexuality and disability for some time now, I often get asked whether things are different here in London. Do the prejudices and barriers that I encountered so frequently in India exist in a developed country? First off, issues of access are far, far better. I can walk unaided on the roads, and use services like the university’s Disability Support Office for any extra needs I may have. There are plenty of attempts to level the playing field in terms of infrastructure, and that makes my life a whole lot easier. But what about dating and relationships?
I have met with several disability rights groups and activists during my time here, and it would seem that the scenario across oceans is not all that different. Janet Price, an activist I have worked with who is herself in a wheelchair, says when it comes to relationships or personal spaces, there’s still a wide gap in the UK. She believes that the connection between disability and sexuality, even in a country as ‘advanced’ this, still needs to be made.
And as for me, having been here for barely six months, I can’t really speak for myself – between adjusting to my new life and heaps of coursework, I haven’t been on any dates! But what I have recently begun to realise is that because I forge connections with people differently, my friendly actions can often be construed for something quite different. Take meeting people on campus. If I was a sighted person, I would be able to casually bump into acquaintances when I saw them and strike up a conversation. Since I don’t have this option, and it’s difficult to remember someone’s voice after one interaction, when I meet someone new I often exchange numbers with them. So this one time, I was at a campus networking event and I met a man at the end of the evening in a cloakroom, where he helped me get my coat. We chatted for a while, and as we were getting ready to leave, he said, “See you around”. And the question in my mind – how would I see him again – just popped out as I asked, “But when will I see you?” After a little laughter on both sides, we exchanged numbers. All this while, a friend of mine had been observing us from the sidelines, and as I went back to her, she gave me a knowing laugh. And I said, “What? I was just networking.” And she replied, “Hey Nidhi, that’s not called networking. That’s called flirting!”
That was when I realised was that my simple way of keeping in touch, in the nondisabled world, was a way of hitting on someone! So in small ways like this, it does sometimes get a little confusing. But you know what? It’s a fun confusion, and I like it.
Nidhi Goyal is a disability rights activist and writer. She co-authored the websitewww.sexualityanddisability.org and is currently pursuing a Masters in Development Studies at the London School of Economics.