People,  Silver linings

The walk towards light

I might have easily ignored the Whatsapp forward which talked about India’s first visually impaired company secretary. But my eyes fell on the name. Turab Chimthanawala. Surely, it couldn’t be the little Turab I knew. It was an unusual name, and one that I distinctly remembered. “It means sacred mud,” Shenaz had told me. To tell you Turab’s story, I will go back to 1995.

I had just joined my MD Pathology course. Among the students who joined the course that year, was Shenaz. Her admission came as a surprise to us, as she was seven years our senior, and her unexpected entry had jumbled up predictions and calculations about who would get which postgraduate seat. Initially we were wary of her. Not because she was the only one dressed in a saree with her pallu always covering her head. But because she used to be on first name basis with our teachers, who were her batchmates! But it didn’t take us very long to know Shenaz better. And when we learnt her story, we really warmed up to her.

Shenaz had been married into a prominent family. She had earlier done her MBBS from Government Medical College Nagpur, but after her marriage, she restricted her medical services to voluntary work. Turab was born to her in 1993. Seven months after the birth of her child, she lost her husband in a road accident. If that wasn’t tragedy enough, she learnt that Turab was slowly losing his vision. Any other person might have crumbled under this double blow. But not Shenaz. She decided to go back to medical school again, to earn a degree and a living. And to ensure that her child grew up to be independent.

When I caught up with Shenaz again, she said, “I brought him into this world. It is my job as a parent to ensure that he leads a fruitful life.” As a baby, she realized that Turab wasn’t making eye contact with her. A series of visits to doctors, both in Nagpur and Sankara Nethralaya in Chennai, and a battery of investigations later, they had a diagnosis. Leber congenital amaurosis. Now, this is a rare congenital condition which is hardly taught to medical students, except if you choose to specialize in Ophthalmology. Children born with this condition have improperly functioning light-gathering cells in their retina. And they slowly lose their vision.

I distinctly remember conversations with Shenaz in college. She wanted to make sure that Turab sees all that he could. Colours, shapes, objects. So that he could have a memory of all this even when he could no longer see. The effort at bombarding him with visual stimuli was tremendous. She did not want anything but the best for him. She decided to seek admission in one of the best CBSE schools in Nagpur. The Principal, Mrs Upadhyay, after learning about Turab’s partial loss of vision said, “There is no problem. We will provide him light.” It was a line which brought in so much brightness into their lives. Shenaz recalls being allowed to choose the section where her son would be admitted to. She would select the brightest classroom which had sunlight flowing in, with a request that Turab be seated by the window.

After the first exam, Shenaz was summoned by the class teachers and told that her son had failed miserably. She held the papers for a moment and exclaimed, he can’t see these lines! The question papers were faint photocopies. The Principal instantly asked for some bold felt pens, and the same questions were rewritten and given to Turab. He answered them all easily. It was clear that he was an intelligent child, but the ways to teach him needed to be different. Shenaz recalls sitting down with coloured pens to try and thicken the lines on his notebooks, page after page. If he couldn’t see the lines, he couldn’t write in a straight line. A cousin saw her do this and offered to print special notebooks for Turab with bolder and thicker lines. Where there is a will, there is always a way. But things were not all that easy. Turab would be scared and start crying when he would be taken to darkened auditoriums for programmes. He would sometimes get lost trying to find his class.

I asked Turab, what his own experience of being in school was. He says he was trying his best to be like other sighted children. And it didn’t make him happy. He remembers being removed from the school choir when it was time for some competitive singing. And then being forced to join when there was no competition involved. Small things like this killed his confidence. “I never talked to girls,” he says. He didn’t have too many friends, and recollects having to think hard about who to invite to his birthdays. He says his batch recently had a virtual get together, and he didn’t have many memories to share. “I hadn’t come to terms with my disability then,” he says. “I refused to use a white cane or ask for help.” He remembers stumbling against objects and staying away from the playground for fear of being pushed or hurt. But academically he was doing well and scored 92% in his board exams.

After his 12th, he had several opportunities to join courses in premier institutes outside Nagpur. But his family was apprehensive and felt he would be more secure at home. So he joined a five-year integrated law course in Nagpur University. Alongside, he pursued the Company Secretary course from the Institute of Company Secretaries of India. It was here that he realized that his vision was beginning to deteriorate. Coping with the academic work was beginning to be tedious when he couldn’t see well. Until now he had read his books and written his exams all by himself. It was time to seek help. He had to hire readers, who would read out books to him. They came at a cost, and had to be paid by the hour. He got permission to use a scribe for his exams. But life doesn’t always have a smooth ride. Shenaz recalls stressful moments when a scribe refused to turn up on the day of his exam. But not everyone was as vexing. He had good scribes too.

By now, Turab was using a white cane. He uses screen reader software to read from his laptop. He decided to train under Nilesh Jain in Nagpur. There were hurdles in his path. Government websites are not user-friendly to the visually impaired. Some of their e-forms are completely inaccessible to screen reading software. Fortunately his boss and colleagues understood his abilities and he was given tasks which required his mental work, such as gathering client opinions, drafting agreements, preparing procedural checklists and researching on the latest amendments. He was also a regular at seminars and conferences. In 2017, he finally received his membership as Company Secretary.

Then Turab decided that it was time to venture out and try living by himself. In the big confusing city of Mumbai. He initially worked with visually impaired Advocate Kanchan Pamnani for around three months. The change to unfamiliar settings was emotionally challenging. But he adjusted and began to enjoy the independence. The short stint in Mumbai did wonders for his confidence. He decided to train himself better, and completed his LLM course from the NALSAR University of Law in Hyderabad.

In 2018, he found a job in Mumbai and began to live independently in the metropolis. It wasn’t easy to get a foothold initially, as all interviews focussed on what he couldn’t do, rather than on what he could. Eventually he found Manish Ghia who interviewed him about his skills and offered him a job. He found rented accommodation in Andheri where he stays with some more friends. He relied on Uber for his transportation, and Swiggy for his cravings. There have been days when he has had trouble and colleagues have helped him out. But overall, he feels much lighter and much happier contributing to his firm. He has found support in disability groups, one of which is Access India. He enjoys writing and often writes his blogs.

I asked Turab what he had to say to the so-called ‘sighted’ people around him. His answer made me smile. He said, “It is alright to crack silly jokes about the other gender around me, like every one does. I hope people realize that I have the same hormones as they do!” I know Shenaz does some volunteer work for the visually impaired from impoverished communities. I asked her if she could give these children dreams. Her answer was one that came from someone who has faced hard reality: “You need money to afford dreams. That isn’t easy in our country.”

As I spoke to Turab about his turbulent journey, one of his random remarks stuck in my head. He said, “All their lives people try their best to stand out in a crowd. I was born different and always stood out. When you accept your disability, moving forward becomes much easier.”

On 14th August, Turab will celebrate his birthday. This is my birthday gift to a child I have seen grow up. It gives me so much happiness to see Turab burning bright as the light in Shenaz’s life. For this success story is Shenaz’s as much as it is Turab’s.


Leave a Reply

%d bloggers like this: