Can we ever have a conversation about desire without centering my disability?

In the centre of an image is a person sitting on a wheelchair, holding a small mirror to their face and looking down at their reflection with a smile. They stand in front of an open door, with two others in the background. The wall behind them is yellow, and a bird sits on a blooming tree.

I realised that even my closest friend felt the need to centre my disabilities in this kind of conversation. I wondered if there would ever be a meaningful conversation in my life where my disability would not occupy the core.

‘I love you a lot but I just don’t see us in a relationship. And, please please please — that has nothing to do with your disabilities,’ said the man who had kissed me passionately only ten minutes before. He was only standing a few feet away, but those few feet were a few too many.

We had taken to each other like dew drops take to flowers. We were the closest of friends, each other’s comfort zone; we ended our days with long calls to each other.

Our intimacy kept growing. As we kissed that day, I felt closer to him than I had when we had first kissed. We had shared ourselves with each other. However, within moments, his words took us miles apart.

The distance multiplied when all I could hear was him saying that his lack of desire to be with me had ‘nothing to do with’ my disabilities. I barely registered whatever else he said. My thoughts spiralled dramatically. I realised that even my closest friend felt the need to centre my disabilities in this kind of conversation. I wondered if there would ever be a meaningful conversation in my life where my disability would not occupy the core. I couldn’t understand why he couldn’t just talk about the fact that he didn’t see us together. Wasn’t that the only thing that mattered, especially if, as he insisted, his feelings had nothing to do with the fact that I live with a severe form of arthritis?

We had talked about my disabilities a lot, but there was never any discussion of any insecurities I harboured because of them. This is because I am not worried that I will miss out on life (or love) because I live with disabilities. The man standing a few feet away from me was himself navigating a life with epilepsy. Truth be told, I had wondered whether it would be complicated were we ever to get together, with the conditions we were both managing. But I am a true romantic, and I trusted that love would make things work. My disappointment was not so much at the lack of feelings on his part, even though I felt lead on, but at the fact that this conversation focused only on the presence of my disabilities.

It’s not that only confessions of lack of love have taken this tone. My disabilities have been generously and equally been included in confessions of love. A few months ago, my physiotherapist professed his love for me, and proposed marriage. I thought his move was bold, because of the professional nature of our relationship, and bizarre, given we hardly know one another. He looked deep into my eyes, and promised to ‘want and accept’ me as I am. I stared at the wall behind him, trying to figure out how he could have fallen in love with me when we had hardly talked. I wondered what he could possibly know about who I am in order to accept me as I am, and confidently propose marriage without even first asking me on one date.

I was too confused to be anything other than speechless (a rare occurrence!) He didn’t insist on an answer immediately. But after a few days passed, he wanted to know my thoughts on his proposal.

I loved the idea of being ‘wanted and accepted’ for who I am. Yet, I was startled, rather unpleasantly, by love that boasted of such loud acceptance. Doesn’t love hold the intoxicating fragrance of subtle, yet firm, acceptance? What did he mean by accepting me for who I am — did he accept, or at least respect, my thoughts, my beliefs, my ideas? Did he embrace my nature, my opinions, my spontaneity, my vigilance? I didn’t know how to respond to his certainty. I was offended by him crossing the professional line. I was curious and flattered by the generous shower of love.

Rather meekly I asked, ‘What do you like about me? What makes you so sure of marriage?’

He promptly replied, ‘Because I love you and it doesn’t matter to me that you can’t move.’

I wasn’t moved by his reply either. I want to discuss my disabilities while talking about the logistics of the marriage… (I have to discuss it even if I am talking about the logistics of eating out) but while proposing to me? Really?

What really did move me was my parents reaction when I told them that a marriage proposal was on the table. ‘Of course not him!’ exclaimed my mother, ‘You deserve much better.’ My father said, more quietly, ‘You belong to such different worlds. How would you be happy together?’ My parents knew him just as much as I did, meeting him when he came for my home-based physiotherapy sessions.

Our little knowledge of him had left us with the same impression, that we are from different worlds. In worldview, in interests, in lifestyle. I was glad my father spoke my mind. However, his words said much more. To me they were the most melodious of anything I had ever heard, because they didn’t mention my disabilities at all. They let me be me, not judging what I deserve and whom I am meant to be with through the lens of my disabilities.

As I sat there listening to my parents, I found new definitions of love and courage. There were no second thoughts, no hesitation, or even a sliver of doubt in their minds. For long they have been disturbed by distant family and little known acquaintances thoughtlessly sighing over my fate, my illness, my disabilities.

They looked at my parents with pity and worry with a pinch of fear — looking at them having to tend to a daughter with disabilities. My parents are told time and again about how unfortunate their life is to have a daughter like me, needing constant healthcare.

They have heard of the uncertainties life has in store for their daughter in her mid 30s; they have heard people wondering about what will happen to me after they pass away. It must be love, true love, that gave my parents the courage to dream the best for their daughter and never to compromise on what they think she deserves. It is such love that makes my desires soar. It is such love that makes me love myself.

It is such love that has kept my faith strong. And, if I may add, my sense of humour too. ‘Oh, but you are so beautiful!’ has often been spit out with a loud gasp when people ‘discover’ my disabilities (that are not obvious unless I am sitting in my wheelchair.) It’s almost shocking for them that my disabilities have not ruined my beauty, or at least had not ruined it till the moment they came face to face with my disabilities. Most people find it difficult to associate their idea of beauty and disability with the same person. Can someone have a disability and still be beautiful according to society’s standards? Can someone whose neck barely moves have lips that draw passion? Can someone who needs support moving a single inch charm with her wit? Can someone whose fingers are stiff still flirt with her eyes and words? Can someone with a ‘weak’ body, a very ‘different’ body, a disabled body still be desirable? I have frazzled many — confronting me; they have had to confront these questions.

Winters are my favourite time of the year. As I cover up for warmth, people take time to discover my body’s inability to do expected, everyday things. Compliments and interested looks get quickly replaced by disbelief, closely followed by the discomfort of not knowing what to do. How do you really behave with a woman with disabilities? And I have often laughed like Santa Claus (ho ho ho) on many such occasions.

I laughed out of relief. I felt almost liberated from the male gaze when in my wheelchair. You see, the wheelchair performed the otherwise rather impossible task of de-sexualising me. I could wear my sexuality by just sitting outside my wheelchair and casually keeping the joints of my hands under wraps. With equal ease, I could take off the cloak of my sexuality by just sitting in my wheelchair. My disabilities that restricted my movement liberated my femininity. I could speak more openly, smile and laugh and engage in ways most natural to me, without being worried about being ‘misunderstood.’ I celebrated my femininity freely, while my wheelchair kept others at bay.

The wheelchair, however, didn’t wipe away the dangers of sexual assault. Instead, it increased my fears. I felt de-sexualised, but not sexually safe. I feel more vulnerable now than I did before, as a non-disabled person. I had always known that sexual assault is more about power than anything to do with sexuality. Disabilities neither encourage nor deter assaulters. Since sexual crimes are not driven by sexuality, I am not immune from them.

As a person with disabilities, I don’t exist despite them, nor do I exist only because of them. I am writing a story about my life in which I am at the centre, and my disabilities are sketching bits of the background. It is a story of bold moves. It is a story of gentle swaying. It is mine.

Soumita Basu is 36 years old, and lives for food–both literally and metaphorically. She spends a lot of time understanding our relationship with food, and the deeper connections between food and health. Soumita loves cooking up a storm–if not with food, then with stories. 


Featured image credit: Upasana Agarwal