"Am I the keeper of my brother?", this is the statement I found in Old Testament, when Cain answers God after murdering his brother Abel.
I have quite an opposite experience to share from my life. When I was 9 year old, my youngest sister was born as the 5th girl child in the family. It was a jolt for all neighborhood and well-wishers who were eagerly looking for a boy at least this time. I am sure my parents had their own emotions to deal with, which I was too young to understand at that point.
A baby is fun irrespective of its sex...we adored her. Unfortunately, when she was about 3-4 months she was declared born blind. This was a shock which was more profound than her bring a girl. When several Doctors declared that nothing can be done, one of the well-known ophthalmologist suggested that there is a ray of home as the child may get vision when reaching puberty. I am not sure whether he was just trying to pacify my distraught parents or if there was any scientific evidence to that.
We held on to this hope and started praying for her sight, while my baby sister grew angelic, playful and normal in all other aspects. Being an older sister, I was highly protective of her. I developed a special bond with my sister. I resisted when people pitied her and at that very young age, with hardly any information on the ways to empower persons with disability, I made a resolve to make her as capable as me and even more. Coming from a village, our family had not much exposure to her special requirements. Only advice my parents kept getting was to send her away to a residential school meant for blind children in a far off city 400 km away from home. My parents were adamant and decided to take care of her and provide her all comforts with family care. The hope statement from the Doctor was always at the back of their mind. With our prayers, we were almost sure she will not remain blind for long. The only other thing my parents thought of doing was save some money for her future.
As my schooling progressed, I took great interest and care in teaching her everything about life and our surroundings. I would build her world by giving her exposure to a tactile world, using her other senses to touch, feel and understand the world around her. I would take her along everywhere, make her play, feel and do things which would make her feel engaged and happy. We all were so proud of her small achievements and hoped one day she will regain her sight.
We encouraged her to attend a nursery school, where she was best in reciting rhymes and socializing with other kids. When no normal schools agreed to give her admission for 1st grade, we had to retain her at nursery for the next 3 years, end of which she was almost performing the role of a teacher. This annoyed the school inspectors and they asked her not to come to school as she is above prescribed age for the nursery. That was the saddest day for all of us. We had no choice but to retain her at home. I took extra care to engage her and teach her after my school hours and we grew very close and inseparable. My mind would work hard to find ways to teach her without using sight. I would come up with plans and methods to teach her things in a way she would understand. It would amaze me how she was able to recognize around 20-25 variety of trees in the forest near our home by feeling the barks. Her memory was an asset, so was her intelligence.
Turning point came when I took up Masters in Social Work for my post graduation. Though, I had to leave home to pursue this course, I was sure this can help me find some solutions for my sister's needs. College Principal guided me to meet a visually impaired person behind our campus who lived independently and was a teacher. This visit helped me discuss my concerns and find many new solutions. I would eagerly wait for visiting home on weekends and download what I have learnt to my sister. She too was very eager and happy to follow the advice and one such advice was to learn and do stuff around the house, help in household chores which my parents never thought was possible for her. We had to change their perception and my sister was persistent and followed every bit of the advice and by the time I visited her next week, she was 10 steps ahead and had some more questions for me. I would act as a messenger and motivator and with this we engaged fully in her rehabilitation process. By now, we knew the Doctors advice was a myth and we had more focus on actions than just prayers.
My quest for institutions led me to Bangalore and I explored different options. On this one point I was in agreement with my parents as we did not want her to be institutionalized. We had known several cases where after institutionalizing at young age the bond between family members grows weak and the child gets forgotten. While we wanted the expertise from organisations to reach her, we had the challenge of reaching that expertise to the village which was far away from the city. We found a 4 month long independent living course in the city. Getting my parents to agree on such a move was mammoth. My friend and classmate from the city helped me to find some solutions. The founder of the NGO where independent living course was offered was visually impaired. So we decided to expose my parents to her and invited her to visit my parents in their village. She readily agreed. After scolding me for this misadventure and raising false hopes of my sister who was increasingly becoming rebellious now, they reluctantly agreed to send her for 4 months. I was sternly warned that it will be only 4 months and no more. Our joy had no bounds.
4 months were such crucial time for her life. Knowing that this is her best chance to learn, she absorbed everything like a sponge and was the darling of all staff and students in the institution. I was amazed to see her growth. Now my sister had a larger group of supporters backing her. Each one was offering a different option of continuing school, but none was suitable for my parents need of keeping her at home under their care and protection. We planned and plotted to work around these conditions.
End of 4 months my sister was very confident, independent and returned home. Though my parents were happy to notice the change, they did not want to say it aloud as it may encourage us on a new adventure of taking her out again. We were not the ones to give up. We kept at it and found a residential school which could make my sister learn Braille in a year, post which she could pursue her studies at any normal school. With another uphill task of convincing parents, she finally moved to the new school. As expected the transition was not very smooth. She was used to comforts and well cared for at home, we had to deal with those small but important aspects for her adjustment. We could pay, but the school could not differentiate for one student. My sister tried her best to cope as she wanted to move ahead in life. Often times did not report all hardships for fear of withdrawal from school. As a result she developed a health condition and my parents blamed me for pushing her into such a situation. By the time we pulled her out of this school, she was an expert on braille, math and had covered portions on fast track till 4th standard, thanks to the support of school teachers.
At this point, the plan was clear, to get her admitted to a school nearby home. Though I was a old student at most of these schools, they gave several excuses and were closed to any such experiments. We had to get creative on finding solutions. So, convinced a Special School in nearby town to allow her to write 7th standard exam after home schooling. They agreed to this arrangement and enrolled her to take the exam. Home schooling was tough, but with my sisters burning desire to excel and the support of an entire family behind she conquered yet another milestone. Newspapers reported her writing her exam with the help of a scribe. Her exam results amazed everyone. She had not just completed 7th but with flying colors. With no regular schooling this achievement was incredible. Everyone had to admit that she had in her to excel in anything she sets her mind into.
Once more, we were hunting for High schools around our village for admission and same disappointment awaited us. There was no law to admit and hence, schools could get away with rejecting to admit. Given her track record, we thought of one more short cut. We enrolled her directly for 10th exam through open schooling. Nearby high school this time agreed to let her sit in the classroom and listen to the classes with the riders that no extra effort solicited from teachers. Yet again, she excelled in her 10th exam. This was followed with many awards and felicitations. She attracted a lot of media attention and was talk of the town in a short span of 2 years. She was the first Braille newsreader and got State level award for achievement.
We decided to give her a full-time education for Pre-University at a normal, highly reputed college. She got through and moved to the hostel, lived as equal among her peers and once more excelled in her studies. She was bold and forthright and was admired by her lecturers, classmates and hostel mates alike. She has a strong personality and never give up attitude. On weekends, we would meet and engage in serious conversations on various subjects. As I was working for a funding agency supporting the causes of persons with disability, I had access to resources and information and organisations which would also benefit her.
By now our entire family was rallying behind her. She decided to do her graduation in fine arts and moved back to the town near our village and stay as a residential student. This too was a first time a visually impaired student was enrolled for graduation in that institution. She did well wherever she went. Every first has several challenges dealing with procedures and mindsets, which she coped well. The mindset we helped her develop was that "expect hardships, as this is rare for the people around you. They are acting out of their ignorance". This helped and she left a lasting positive impression on those people and institutions she associated with.
Getting into gainful employment was our next challenge. Mobility was another aspect we had to address and we had our own fears letting her navigate the city on her own. I would feel anxious and nightmarish when she was attending mobility classes. Will she be left alone on the roads, will she be safe, will she meet with and accident, what about stray animals etc. I had seen many cane users on busy city roads and feel how helpless they are. It was time for me to change my thinking. An NGO staff told me not to visualize her world from my point of view. "You have seen the world with your eyes and you cannot imagine how she is navigating her world. As she is born blind she navigates her world with sounds and other senses and you need to allow her that freedom to explore" and that made me change. Yes, she was not me. I cannot look at her world from my eyes. She was growing and she has her own way of looking at things and I got to listen and understand. With that advise, I took a back seat and let her drive her life forward. My mode of engagement with her changed. I listened to her more now. She had developed her own set of advisers, friends and peers who were also offering her different solutions. I was firmly backing her, but gave space so she could find her voice and path.
She decided to learn computers and Medical Transcription and got a job. Now I had exposure to her work world and how she was navigating it. Living in a Paying Guest, commuting for work and fun, outings with friends, earning, saving, spending etc. I was a good listener and always nudge her thinking. We were great friends, inspiring each other. I was glad she had a whole community of organisations and individuals and family supporting her and I had my space to focus on my own family and career.
Within 2 years she was bored of Medical Transcription job. She then started attempting bank exams. All through these times she was backed by strong mentors and advisers who made it easy for her. She got selected for bank, moved from clerical to officer. She had a house of her own and started looking for a life partner. We would debate this and she would share experiences of her other married friends. My exposure to her world was expanding. She had made friends with very strong and confident women with disabilities in her PG, workplace and she would back her arguments with their experiences. Occasionally I would feel she is making wrong choices and she would be adamant and there would be arguments, but soon we would be back to normal. I felt helpless when she asked me to look for a suitable life partner for her.
I widened her options, nudged her to look for creative solutions and now the technology was her savior. I was getting busy with my own career, family and loads of personal stuff. Technology was her strength. She could connect with people, explore options, advertise in matrimonial sites and scan possible suitors. It was tough as guys who would be interested seeing her profile picture would back off the minute they hear about her disability. It was tough, yet she persisted and was triumphant there too.
She completed her Post graduation, was working as a bank official and found her life partner. It took so many years and her grand wedding was an eye opener for the people in our village as to how a visually impaired person can live a normal life with right guidance, support and belief. She continues to set high goals for herself and is raising her daughter and is excelling as a career woman and a well balanced family person. How many more feathers can we add to her already loaded cap! She deserves all the credit for believing in herself and marching forward.
Yes, in this journey, I have been my "Sister's keeper" and at times our lives almost seemed inseparable. She has been my best teacher!