I grew up in a large middle-class partition-affected joint family, where means were minimal but with a less demanding atmosphere, we were satisfied and happy. At 16, I got leukoderma, a skin condition that made brown and white patches all over my body; that was my first brush with ‘disability’.

Studying (my love) continued but dramatics (a passion) was thrown out of the window. An ardent student of Zoology and research in Microbiology, I was a permanent faculty in the University of Delhi before I turned 21! Married an army officer who didn’t care about my looks, two children, happy family.

At 39, I became paraplegic due to a road traffic accident, and trudged my way back to my teaching and research, adding a social element to my life. Tragedy struck once more when I lost my husband 3 years later and then I needed to live on without his indomitable spirit and constant support.

A couple of months ago, I chanced to read an article penned by Mared Jarman for BBC.

The article set me thinking of how close I was to Mared as I have lived with disability, and my disability is more ‘visible’ as I am a wheelchair user. I also do peer counselling, which is very close to playing different roles like Mared does. During the counselling sessions, one needs to live in someone else’s shoes to understand their way of life, almost like entering their family and then counselling. Hence her words resonate with me and most of the patients I counsel. 

Though I have no sensation for the lower two-thirds of my body, I have a soul so very human, with as much desire to be desired, as much love to be loved, to feel ‘normal’ and to be felt ‘normal’ in all my ‘imperfections’.

There are additional thoughts that come to mind. Firstly, it is very important to understand how normal I feel in my ‘abnormal body’. I feel that I am normal, I am human, and I have the cravings for love as much as the so-called ‘normal’ versions of humans. The nearer I come to believe that I am ‘fine’, the easier it is for others around me to feel the same. If I love myself the way I am, I find people around me begin to understand me more. This is often an important part of my conversations with my patients. We live in a society where talking about sex is taboo even among real-life partners in most cases. It is almost as if you have sinned if you show desire.

Mared does not talk about being a woman and whether disabled men have a higher degree of acceptance than disabled women as far as sex is concerned. Maybe she doesn’t come from that kind of background. I do. To be a woman is a curse in large sections of Indian society and to be a disabled woman is a double whammy; to be poor, a third. A man in a wheelchair still finds a partner, a woman in a wheelchair rarely does; and that too, to think a spinal cord injury makes a man more sexually dysfunctional than a woman! But that is perhaps deeply rooted in our culture. An able-bodied woman is also almost always just a passive sex partner, so what to expect from a disabled one? The tragedy is that most women with disability do not even think about it or allow themselves a right to pleasure in sex. I have often seen men who just leave their wives after a spinal cord injury; the wives then meander to their maternal homes where they may not be as welcome because now the house belongs to a sister-in-law. I have even dealt with husbands who say, “What use is she to me”, and you would know the uses for sure. Deep down, it hurts, it kills.

Mared touches the core of a person with a disability, how much it sucks one’s energy to feel ‘normal’ in the first place. To say that I am disabled to oneself and then say it to the world – it takes ‘more than human’ courage. Sex is just one part, though an important one, of being human. Kudos Mared!