"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.
Babies are fun irrespective of their gender,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 if there was any scientific backing to that or he was just trying
to pacify my distraught parents.
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
decided 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. My parents were adamant and decided to take care
of her and provide her all comforts within the family. 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 to 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 the 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. 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 to focus on actions than just
prayers.
My quest for institutions led me to Bangalore and I explored different
options. On this one point though 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
four 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. I was sternly warned that it will be only four months
and no more. Our joy had no bounds.
Those four 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!
By Lavina Cardoza