Hello! New World

By Sanjukta Choudhury Kaul

My early years were spent growing up in Delhi.  Both my parents are from Bengal, and I grew up in a middleclass Indian Bengali family with liberal ideas. However, along with growing up in a perceivably ‘non Bengali atmosphere’ in a not so very ‘safe city’ in the 1980s,  my childhood  soaked in an environment typical for women growing up in India,  protected by mothers, aunts, cousins, neighbors, who sufficiently and repeatedly sensitize women  of  their gender. By the time I grew up, I had several years of solid experience, playing the role of an Indian woman. I had skilfully rehearsed my part, was aware of my boundaries, and how to cross it.  I knew what to expect in uncommon circumstances and how to work through situations despite gender barriers, thanks to some great advice from senior working women colleagues at workplaces and old aunts in the domestic sphere. However, I had no such experiential benefit when it came to the adult onset of disability.

In a matter of weeks, I went from being an able-bodied professional with full thriving career to a person with disability, having an uncertain future. With no prior experience of disability in the family, my disability had a disabling impact on the whole family. I was a brand new mother who had suffered a rare post pregnancy organ loss that had left me with irreversible and permanent disability. While the family worried on re-calibration challenges, especially because of the new baby and other issues. I distinctly remember I was most worried about the daunting task of professional changes this would possibly bring for me. After all, I had spent years getting trained in the vocation. Despite an extremely supportive partner, my biggest fear and concern was how am I to behave as a person with disability and earn my own independent living? Was I to be sad /anxious /worried /aggressive? Or how to deal with the range of emotions and the post-partum? In these moments of crisis came some calm advice from different quarters of life: ‘Why worry, you are anyways married now and also have a son?’ – a desirous position for many Indian women.

I searched for people to talk to, especially women who would have had similar experiences. But there were no role models, guides, counselors outside the medico fraternity who could help me settle down in my new avatar. One morning I remember smiling to myself visiting my cheerful old tax consultant who gleefully informed me that I was eligible for income tax deductions on account of my disability, should I retain my job and decide to go back to the same. Nevertheless I consider myself very fortunate as I could go back to my old job.

In India, even if a disabled person wants to be independent and make their own choices, it is hard making oneself heard. For me, it occurred in my roles as a parent, partner, and employee. Though I remained full of confidence, the world around me was not so sure for varied reasons ranging from genuine love, care, concerns of close ones to uncertain and hesitant resistance of strangers. The arrival of a full time ‘able bodied’ domestic help and other battery of assistants was the first signal of infringement on my sacred personal space and one which had me questioning my own parenting abilities as a person with disability, and my individuality. While I cringed at the beginning, I also came to appreciate the same as it was indeed hard to settle into your new disability, along with the new parenting role.

I slowly began to acquire a more realistic perception of my own situation and began to adapt my own aspirations based on global experiences of similar people. Initially, I remained very open and always informed people of my disability at the outset both within the domestic and professional circles but slowly I realized it brought forth uncalled bias and pity on many occasions. I learnt not to disclose the same unless absolutely required and was amused to see how it produced surprise and disbelief.

In almost a decade since the onset of my disability, my own relationship with my young growing child has undergone a change. From being a parent I have also reached a point where the ‘kid’ now parents me on issues of safety /danger and doubles up as my special needs assistant on numerous occasions. I have also benefited from a core group of very close supporting people who I can fall back on any time for anything related to my challenges. One of the most important things I have learnt over the years is to trust people who have assisted me in micro managing my life…I have learnt to awaken my other senses and use them to the fullest and, most importantly, I have learnt to make peace with my own self even as I work through my rights as a person with disabilities.

[Sanjukta Choudhury Kaul is an academic and professional with interest in communication, CSR, disability studies and leadership. She is currently a full time doctoral candidate at Monash Business School. Contact: sckau2@student.monash.edu]