The love story that wasn’t

This article by Nidhi Goyal was originally published on http://blog.sexualityanddisability.org on February 14th 2017.

I didn’t know that the simple act of cutting a cake for a New Year’s eve party would spark off a new chapter in my life, one that I would hate, love, enjoy, and later cherish. The party was at the house of a college friend of mine, and the cake had been brought by one of her colleagues.

When he realised that I couldn’t see, he started reading out the text on the cake. Some of his friends sniggered, and I sensed his anger at their implicit rudeness about my sight. He shut them up, and our conversations began.

This was nearly a decade ago, and yet it stands out as if it were yesterday. Within a month of meeting up with common friends, and over some cups of hot chocolate, he hinted at, explained and reiterated his attraction – or was it love? – for me. He found me brilliant, intelligent, beautiful, and loving; basically, he felt for me everything that a woman wants her partner to feel for her.

The first time he asked me out was over the phone at 1 am during one of our long conversations. I communicated my first refusal to him through silence. I just didn’t feel like there was enough chemistry between us. So we never dated or became lovers, but he was a friend who coloured my life with experiences that I still remember.

Some of my friends couldn’t understand why I wouldn’t give in to his attraction. After all, this was the first time in my life that a man had ever said that he was interested in me. They just didn’t get why I did not want to be with a so-called perfectly healthy, ‘normal’ man. Their reactions made me feel upset and confused.

I didn’t like talking to him in that way, nor did I feel any desire when I was with him. No matter how much he cared for me, the comfort of his friendship was not the same comfort I wanted from a partner. I didn’t confide in him or seek his support like I would a partner’s.

But wasn’t it better for me to compromise when someone was ready to ‘accept’ me? As a blind girl, did I really have a choice? Would anyone else ever like me again? These were the assumptions – both said and unsaid – that surrounded me. No matter what people said or implied, I guess my strong heart knew the answers.

I assume my refusal hurt him, but either he remained hopeful, or he just didn’t let it colour our friendship. He was happy to hang out with me, he argued with me as an equal, and he was my partner in crime when we sneaked out at midnight for pav bhaji. He didn’t treat me any differently when he discussed his work problems with me, he didn’t treat me any differently when he discussed his spiritual beliefs with me, and he certainly didn’t treat me any differently when I talked to him about my ambitions and plans for the future.

He was a natural at adapting to my disability; he never made it seem like it was a big deal. Once, when we were at a discotheque with friends, I was dancing with complete abandon. I am usually pretty much alone in the middle of the noisy space of a disco despite being with friends, since the visual coordination of steps isn’t possible. But I have a great set of friends who involve me in common dance steps through touch, and that night, so did he. But he also did something that the others had not picked up on – he squeezed my hand every ten minutes or so. I would say this is another way to make eye contact, simply to say ‘I am here.’

He was older, non-disabled, and had an MBA. He was working with an MNC while I was a struggling postgrad student, but he didn’t patronise or infantilise me – not that I would have let him. He liked to spend time with me, and to do different things with me, as he’d do with any other ‘normal’ friend.

One day, he said that he was tired of driving me around, and that it was my turn to drive. I thought he was joking until he pulled me out of my seat and pushed me onto the driver’s seat. Did he seriously want me to take charge of his car – his first love? Before I knew it, he was giving me instructions on the mechanics of driving, and I was following them. The experience of driving without sight, albeit on an empty and straight road, was exhilarating. I screamed with excitement and fear all the way through.

Our friendship grew and matured with time. Perhaps his love for me became intense. But as the days passed, contrary to what he’d assumed, it was clear that I didn’t want him as a partner. Something of his persistence must have shown at his home, because his mother was furious about our growing friendship.

He shared her displeasure with me, and instead of feeling hurt or uncomfortable, I was smiling with joy. This might have been cheesy of me, but this was the first ever time that the mother of a man thought that her son could fall for me, instead of just assuming that I was the angelic, genderless and harmless disabled best friend.

By then, his family had decided it was time for him to choose a life partner. Despite my refusal, he named me as the woman he wanted to be with. What followed was perhaps expected, and yet so painful that even though I didn’t love him, I was hurt. It hurt that his parents dismissed me because of my disability, even though they liked me, and I was otherwise whatever they wanted their daughter-in-law to be. But as far as they were concerned, the idea of him marrying me was absolutely out of the question because I was disabled. They didn’t want their son to be shackled with permanent caregiving responsibilities, because they assumed that I’d be a burden.

Their refusal didn’t matter, because I’d refused too, but what still shattered me as a 24-year-old woman were the reasons they gave for doing so. I had always been aware of the stigma surrounding marriage and disability, but this time it was my reality, and this reality was clawing at my skin.

Perhaps what hurt the most was that he didn’t persist in his efforts to be with me. He persisted when I said no, but not when his parents made unfair assumptions about me. This made me wonder just how equally he really treated me in the end.

Seven years have passed since this incident, and we are still in touch. Over cups of hot chocolate, we still remember those days, sometimes with fondness, and sometimes with discomfort. But we both know now that we would never have made sense together. My initial assessment of my feelings was right, and thank god I wasn’t consumed by any pressure to be with him.

As for him, after seeing me grow up into the stronger woman that I am today, he is sure that we wouldn’t have been compatible with each other. But it is hard for me to forget my first lesson in rejection, not because the man in question didn’t like me, but because assumptions about my disability superseded everything else.

We can-can: a podcast on sexuality & disability

The platform sexualityanddisability.org was developed as a resource by and for women living with disabilities, to fill a gap in resources on sexual rights, including sexual pleasure. In this podcast Nidhi Goyal shares insights and experiences in developing the platform, working on sexual pleasure with girls and women living with disabilities, and how to challenge social myopia on these issues.

TRANSCRIPT (18:09)

Hello everybody. This is Nidhi Goyal from Mumbai, India, and I’m here to talk to you today about sexuality and pleasure; and what does that mean for a woman with a disability? The discussion today is called, ‘We Can-Can’.

Let’s begin with a visual. What comes to your mind when I say a woman with a disability?

Maybe you paint a picture of a woman who can’t see. Or a woman who can’t walk. Or a woman who cannot talk, or hear, or speak. But do we ever focus on what this woman can do? Somewhere in our minds we consider women with disabilities less than woman. We only focus on them, or look at them, as someone who would need care. Someone who would need assistance. Someone who would need some rehabilitation. Period.

We maybe also consider them less than human being. That would explain why we would never think of what she would feel, what she would want, what she would need, and what she desires.

Keeping this in mind, and really with the thought of talking to the woman within, or inside, the woman with the disability, we researched and launched an online platform called sexualityanddisablity.org.

What was this platform about? It really spoke about the sexual rights of women with disabilities. It spoke to them about their bodies, about their lives, about their identity. Because women really look for someone like them. For example, the woman in a wheelchair, who was looking for an image of her playing sport. The woman who couldn’t hear, who really still wanted to dance to the music and socialize with others. We really wanted to talk to these women, and then, sexualityanddisability.org was born.

So what does sexualityanddisability.org speak about? It spoke about the spectrum of sexuality. We really began the conversation about talking to women with disabilities about their bodies. The bodies which may not look like someone else’s. The body which looked different. Which felt different. Which smelled different.

We also spoke to them about their sexuality; about their needs, their wants, their desires. We spoke to them about relationships; relationships with themselves, relationships with others, relationships with that one special person. We moved on to talking about marriage, and what it would mean to negotiate this institution.

We then spoke about parenting, and what it would mean if a woman who did not have hands, wanted to wipe the bottom of her baby; the woman who could not see, who wanted to feed her baby with her hands; the woman who could not hear, who wanted to soothe or calm her crying child.

We then moved on to talking about violence and violations, and what that meant about everyday discrimination that women with disabilities faced. We really wanted to address the complexities of exiting violence. What would it meant to ‘walk out’, when you were in a wheelchair? What would it even mean to raise your voice, when you could not hear and you could not speak?

It was amazing, that when I research and co-authored this website with other colleagues at Point of View, that there was no single unified resource available online talking about the spectrum of sexuality. Really talking to in a positive lens, and really considering them to be sexual beings.

While we were researching this website, we were assured of its importance and its need; because, women in their 20s did not know what their bodies, or those of the opposite sex looked like. Women in their 30s, did not know what were their pleasure points, what was orgasm. Women in their 40s, were still puzzling over whether in the social scheme of things, they were “marriageable materials”. It was very, very empowering, and very touching, to listen to the stories and to write about them, that women with disabilities shared in their everyday lives.

I’ll narrate one of their stories here:

There was a woman who was a burn survivor, an acid attack burn survivor. She spoke to us about her experience finding a partner. Many of her friends, her close family, and society at large told her:

‘…You know, your face is disfigured. Um, yeah, you look different. Why don’t you marry a man [because she was heterosexual] , who is visually impaired. Because then he would not care about you not looking beautiful.’

This story was extremely telling about how much emphasis we lay on beauty. How normative our thinking is around beauty and its standards; and how, when we think that someone doesn’t meet a particular social standard or normative idea that we have set in our minds, we think of them as defective. As less.

Hence, we want them to be paired with one other who is defective, or less, or who is not “normal”. So the emphasis moves away from the connection in a relationship; from the spark of love, from the spark of sexual attraction; and just remains with disability.

It’s amazing how when we talk about sexuality and pleasure, we never think of it with disability, or we never think of that combination.

In the recent past, there was a film that was released called Margarita with a Straw. It was an Indian film, and it was amazing because the community of people with disabilities was really exited. They thought, ‘finally!’, a narrative which echoed their realities. A narrative of a young woman with a disability who is a complete prankster; who had her dreams, her ambitions, her circle of friends, her heartbreaks…and her naughtiness.

Well, this was one side of the story. There were other reactions. This particular reaction that stood out for me, this open letter that was written:

You should be ashamed of yourselves.

I’m not quoting them here, but paraphrasing.

The filmmaker should have been ashamed of herself, for even thinking that people with disabilities or women with disabilities thought about sex and sexuality. What rubbish! There were so many more important things in their lives. They needed to think about rehabilitation. They needed to think about medicalization. They need to think about corrective surgeries! They need to think about survival. They need to think about education employment. There is no time for sexuality. It’s not even on their radar.

If sexuality is not a priority for women with disabilities, it is not a priority for anyone. Because even if you’re not disabled, at age 1 you’re really learning and struggling to walk; at 2, you’re struggling to talk; at 4, you’re struggling to read and write; at 10, education is your priority. Later, social interactions is. Then ambitions is, career is, and so on and so forth.

If sexuality, desires, pleasure, and relationships are not a need or a priority for people with disabilities, they cannot be a need or priority for people without disabilities, can they?

But why do we separate this conversation? Because relationship, desires, intimacy are something that’s in our personal space; and you know when we talk about disability, we somewhere are very uncomfortable to bring disability into our personal spaces. We can talk about them in a development context. We can really talk about them in a political context. But when it domes to personal spaces, it is us, and they are them.

The fact that women with disabilities have to prioritize, or do not feel the need for sexuality, its false. And how do I say it so confidently? I’ll give you an example here.

When we began extending the reach of our online platform, sexualityanddisability.org, we started reaching out to women with disabilities through disability rights organizations—in their homes, in their institutes, etc. and providing accessible trainings on disability and sexuality.

At one such workshop for visually impaired girls, I remember we were having a conversation on things they had never done and wanted to do. We got fascinating answers. These were girls from rural India, who’d come together in a city to receive livelihoods education and rehabilitation. And they said,

‘You know, we’ve not travelled out of the state, and we’d like to travel. We want to wear jeans. We want to look modern.’

Then we were talking about what kind of conversations would they want to have, and what would they want to know? They said various things, but one thing was missing, so I stood up and I said,

“Hey girls, don’t you want to know about sex?”

Guess what the reply was?

There wasn’t silence.

There wasn’t discomfort.

There was an uproar.

There was an uproar of affirmative, positive, “Yes!”, and there was an uproar of giggles and laughter and smiles.

That really was very telling. That told us that desire and pleasure is not very far away from the mind of a woman with a disability.

Yes, if you made a comparison that way, patriarchy says that ‘No woman thinks of desire, no woman thinks of pleasure; that’s not important in her life’.

Similarly, there is an abelist patriarchy, which says ‘Women with disabilities do not think about desires, and have no needs, and do not want or prioritize pleasure in their lives’.

Through our workshops we also try and open up conversations about relationships. When we started writing the website I distinctly remember one of the disabled women asking me:


“How would you create rights around relationships? It’s not a legal right.”

Yes, it is not a legal right., but it is something that everyone has a right to engage with, to experience. At many of our workshops when we’re talking about relationships, the conversation goes something like this:

I, as a facilitator and trainer ask, “What kind of partner would you like to be with?” A common enough question, considering that every person gets asked this by their siblings, by their parents, by their families, by their friends, by their peers, and so on.

So I ask the girls, what kind of partner would they like to be with? And if I put this question to non-disabled women, they say: ‘MaybeMaybe I would like a partner who matches my intellect’. Or someone else would say, ‘Maybe I’d like a partner who travels, because I love travelling too’. Someone else would say, ‘Maybe I’d like someone who is calm and composed, because I am not’. And so on.

But when I put this question to girls and women with disabilities, they come up with responses more like this: “Well, I think, I would like someone who does not have the same disability as I have. How would we manage if both are blind?’”

Someone else would say, “I think I would like my partner to be with the same disability as I have. Only then we’ll be able to understand each other. So I will be hearing and speech impaired, and they will be hearing and pseekch impaired, and that would be fantastic because we would really really understand our world

Someone else would say, “I just have a polio issue, I want a non-disabled partner. I don’t want anyone with a disability”.

If you notice, the conversation starts and revolves around disability. Because disability is such an identity marker, it fogs everything else; and as society diminishes people with disabilities, this is what they do to themselves. They remove the person, and only reduce themselves to the disability; and in every conversation that’s reflected.

This, is really the influence of the non-disabled society, and their myopia on disability and relationships.

Taking about relationships, I had very recently read an article in one of the global newspapers or magazines talking about how 50 Shades of Grey has really opened exciting opportunities and possibilities. They really emphasized on how fantastic blindfold sex can be, and that’s something that 50 Shades of Grey has apparently taught people.

Hah.

I wish people would have just spoken to visually impaired persons. I wonder why it took a book and film for us to register that sex can be beautiful in creative ways. Maybe because that’s because we have very, very normative ideas. We have ideas that are set in stone; ideas on pleasure, ideas on sex, and definitely ideas on relationships.

It’s basically a vision or a view that matters. So when you say myopia, that’s a view. When you talk about having different views for different people, or different gazes for different people—that would apply to women with disabilities.

What do I mean by this? For example, if a woman—woman, not a disabled woman—if a woman is in a relationship, she goes to work, and she shares the chores with her partner; she is considered to be a modern woman who knows her rights, and an empowered woman.

If she’s a woman who has a partner, who has a job, and who has a baby–but she hires a nanny to take care of the baby; she is again considered to be a very empowered woman, and someone who balances her life beautifully.

If there is a woman with a disability whose working, who is educated, who has a partner, and who has a baby, and hires a nanny to take care of the baby—the focus shifts from her empowerment to her disability. Because people are quick at pointing out, saying ‘Anyway, she’s a woman with a disability, she would need help’.

If her partner chopped and she cooked, the question would again be, ‘Oh she’s disabled? Of course she couldn’t chop the vegetables’. It’s amazing how the discourse then shifts from empowerment to disability again.

So it’s basically the view that influences our thoughts, and which then influences the woman with a disability herself; where she starts internalizing the stigma, the prejudice, the myopia that we have.

And this is a situation where women with disabilities like me, have to still stand up and talk to you today and say,

‘Sexuality, pleasure, desires—everything is for me, because I can-can”.

Thank you very much.

 

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ABOUT THE CONTRIBUTOR

Nidhi Goyal is a disabled feminist from India, committed to changing the lives of women and girls with disabilities. She is the Sexuality & Disability Program Director at the non-profit Point of View, where she researched and co-authored a pioneering online initiative www.sexualityanddisability.org—a comprehensive online resource on disability, gender, sexuality and violence. Extending the reach of this platform, Nidhi designs and delivers accessible trainings across India and across impairments. Nidhi actively advocates at policy and legislative levels in India, raising the profile of issues at the intersection of gender & disability through op-eds, journal articles, lectures. Nidhi also consults with a range of national and global women’s rights and human rights organizations. She is a researcher for Human Rights Watch and serves as regular faculty at CREA Institutes on sexuality, gender and rights. Nidhi is also on the board of ‘Standing Tall’ – an Indian affiliate of Handicap International; the advisory board of “Voice”, a grant making facility by Dutch Ministry; and served on the International Planning Committee of the AWID Forum. Finally, she is a standup comic artist who uses humour to challenge prevalent notions around disability, gender and sexuality, and has performed in three countries within six months of her debut. You can read more about Nidhi’s work @saysnidhigoyal.