Sharmishthaa Atreja, Assistant Professor at the Department of Philosphy, Delhi University, has lost her vision through a degenerative eye disease known as Retinitis Pigmentosa. She shares her story of coming to terms with gradually losing her vision and how she copes with an active professional life now.
The beginning
Can one imagine what it is 'to go blind'? How is it possible for a 5-year-old to understand what is blindness when she is enjoying pink, yellow dog-flowers in her garden, plucking those green lady-fingers from the kitchen-garden with her mother and enjoying the bright, red, happy looking clown with the multi- coloured lights twinkling through the balloons he carries? These visuals have stayed with me even after I lost my vision gradually and completely to something called Retinitis Pigmentosa, an inherited and degenerative eye disease that causes severe vision impairment due to the progressive degeneration of the rod photoreceptor cells in retina.
I always thought that the way I grew up perceiving the world – slightly blurred, often stepping onto the mop bucket at home, missing those fine boxes in the math notebook – was also the way the rest of the world looked at the surroundings, together with the hits and misses.
This was largely due to the fact that my parents lived in denial for a long time and refused to accept my blindness. I would be led through endless tests with ophthalmologists and vaids. And when that did not yield results, my weekends would be occupied by visits to babas, pundits, temples and gurudwaras.
My Travails in the Growing up Years
My growing up years are dotted with my skirmishes with different situations. I loved swimming, but I bumped into other kids swimming with me. I cycle-crashed into bushes. My mother tried hard to make me an active kid participating everywhere possible. When I was one day rushing to my friend’s house, all dressed up and excited to show off my new dress, I bumped into an electricity pole on the road. I returned home, all flushed and embarrassed, and very confused as to how I had missed the large and prominent pole. With all these accidents, I had somehow internalised that it was not my eyes that was the problem, but maybe I was not observant enough. My process of going blind would have been easier for me to accept, if my family wasn’t always trying to make me believe that I was actually okay. This made it harder for me when I actually lost my vision.
The gradual transition from light to darkness
Worried parents, not so convincing ophthalmologists and irritated school teachers is how I remember my childhood.
The uneasiness of teens and the inept condition of Retinitis-Pigmentosa made me an irritable child. The journey from pencils- to Shading Pencils- to sketch-pens- to magnifiers and markers was not as disturbing as was the increasing squint of my eyes. I became a prank-prop for my class-mates. They would stand in my way so that I bump into them and they would enjoy their teenage excitements touching a girl and on top of it, my embarrassment served as an extra topping.
The teachers were not too cooperative as well, as I was a non-performing student.
I also would increasingly feel left out of my peer groups who would go for movies, get-togethers, bike rides and so on, and this would make me bitter. In frustration, I would often yell at my mother. My mother made me a part of a group of younger children, who were not so judgemental about my condition. And these kids remained my best friends till I went to college.
By then, I had lost most of my vision. It crept in slyly, and I only realised that I was not able to see my own handwriting when I tried making notes with that thick dark marker. It was the first year of college. Before this, it was my mother who used to read for me. Assistive devices other than the recorded cassettes were still not readily available. Here people did not mutter about my eye condition to each other. Perhaps they had also come to see new things and this was one of them.
Staying in the college residence with people with the same set of problems was a big thing which helped me adjust to not being able to see. I would listen to ‘Delhi Times’ when they would read it aloud, I would walk with my bucket to the washroom when they would walk with theirs and guide me with directions. So having food in the eating-mess and carrying buckets around the corridors to find water together was something which brought new meaning of life to me.
It took a year, but finally this helped me announce it to myself that ‘I am blind and it is no big deal.’ Being able to see partially was always a confusing state for me. I could never tell myself that I could not see and I’d have to find ways to overcome this.
It was now that I realised that I am not able to see most of the things that I thought I could. In fact the things that I believed I could see were the past impressions mixed with the touch and the descriptions. It became clearer at a departmental trip where I was not with the set of people I was used to. A secluded hill-station in Uttrakhand- must have been beautiful. But since I had no descriptions of how the place looked like, I had to resort to my own resources. The hills for me had become looming shadows with no colour. The lights had slowly faded from my eyes. And science had no answer to my condition.
My loss of vision, in fact, had no pattern to it. I could see my mother’s face one day and after a few days, I noticed I was not able to see her facial features. It then became a silhouette and now I hardly remember her face and have no idea what she looks like when she is old.
Advocacy is a way of life. My mother’s perseverance, equal opportunities ensured by the Constitution of India and assistive-technology have helped me stand where I am today, an Assistant Professor with Delhi University. Professional places for a blind woman come with a double challenge. I had begun my professional journey with a perception that since it is an education institute, I’d have accommodative people and spaces around. But on the contrary, my needs are interpreted as being too demanding and me to be too persistent. I have realised that it is not always easy for the colleagues to find a blind woman on the same table; and for the students, often, a short statured teacher carrying a cane is a less respectful figure. The world is dominated by the visual senses. Professional and personal lives for those without vision can be an unending advocacy and I do realise that I will have to be my advocate through out.
