Nostalgia
of a spastic
“And
the award goes to Mr. Kedar Vasant Indurkar under self employed cerebral palsy
category...”
I just could not
believe the moment, though I was experiencing it. I was immediately wheeled by
an attendant to receive the award. Mrs. Pratibhatai Patil -then- President of
India gave me the award and talked to me in Marathi, I responded in the same
language and though the loud applause I was wheeled back to my place in that
auditorium of Vigyan Bhavan in new Delhi. I was overwhelmed with joy and at the
same time became emotional… Different scenes of my 33 years of life going
through my partially damaged brains, making me nostalgic.
I had known the stories of my
childhood from my parents and grandparents. My beloved grandfather was not
alive to see my achievement but my grandmother was at home. She could not
attend the function but my uncle managed everything at home and she could watch
the function on Television. I just cannot fathom her feelings she was happy and
proud of me and because of her blessings only I think I could work so hard to
gain success.
The incidences I am going to
narrate now were told to me by my family and friends, Yes, my attendants are my
friends now, like myself those boys who came from Bihar to Delhi to look after
me also became quite successful in their lives. Destiny has helped me as well
as them. So narration will be the stories of my childhood mixed up with my
emotions.
My father was in Zambia when
I was an infant. He came to India to celebrate my first birthday. My
grandparents were thrilled to receive a small child in their house after a gap
of many years. My granny arranged the things in the house in such a way that I
will not be harmed by anything when I toddle around, but Alas, They were very
much disappointed when they saw me. I was not even able to hold my neck or do
any body movements.
My
brain was affected at the time of my birth. I was born in a private http://www.youtube.com/watch?v=UMWIbw5SZzYhttp://kedarindurka.blogspot.in/http://kedarindurka.blogspot.in/nursing
home in Bombay. At the time of birth, though full term, I was premature by
weight standard and doctors asked my parents to put me in incubator
unfortunately the nursing home did not have any incubator and I was rushed to
Sion Hospital. The entry into the hospitals incubator took around 2 and half
hours and I was oxygenless for that period. Because of this my brain suffered
from damage in the area of motor skills.
All the muscles in my body were affected and became rigid. I could not
move my muscles at my will. This is called spasticity. The brain damage is
known as cerebral palsy in medical terms.
Unfortunately my infancy days were
spent in Lusaka a capital of Zambia. The doctors there could not diagnose my
condition and my parents were in dark. They were comforted with the words
delayed milestones. When we returned to
India our doctor friend immediately suspected the condition and advised my
parents to consult a doctor in Delhi. There I was diagnosed as a patient
suffering from cerebral palsy.
My grand father late Mr. Gangadhar
Indurkar was a journalist and accredited to the parliament since its inception.
He was very well known person in Delhi maharashtrians and had good political
contacts. My grand parents were really shocked, but took good care of me and
the harrowing experience of physiotherapy and occupational therapy started in
my life. Here I just want to mention one thing. Doctors say that if the
condition is diagnosed early in my life and physiotherapy is given at the right
time, the patients improve a lot and some patients even are able to walk around
of course it’s a matter of luck.
I
can not blame my luck or anything because I have got a spirit of acceptance of
my physical, mental and environmental conditions. I think that’s the blessing
God gave me with my disability. I have accepted the condition with a brave
heart and tried to achieve the things which my damaged brain allowed me to do,
yes here I want to admit one thing. As a small boy I was a very timid person.
It was not possible for me to remain alone anywhere. I required some body
always around.
Oh, that reminds me one of my school
in south Delhi. When I was five years old I started attending a school near our
home. The school was for spastic children, run by spastic society of India.
There were 8 children in my class but none was able to speak. I had started
speaking words at that time. First I was pronouncing the words in reverse way
but was trying to grasp. Other students in my class were not able to
communicate. My class teacher – Brida – was a very good teacher. When she used
to be around I used to be quiet and try to do whatever task she gave me but as
soon as she used to leave my sight I used to start crying and howling so she
gave me a nickname chipkali (a house lizard). Mr. Arun Shourie’s son was also
there in my class. His mother Anita was a teacher in our school.
I started picking up bad habits of my
classmates and did not any improve in my
speech or understanding in that school. At the same time my parents shifted
their residence to a faraway area. I had to travel in a school bus for more
than an hour to and fro from my place. All that time I used to cry. Therefore
after one year at that school my parents decided to discontinue my schooling.
My mother and my servant friend used
to play with me. My mother tried to talk to me and gave me occupational therapy
i.e. – playing with soft clay and learning colours and numbers and alphabets. I
started showing some improvement in my speech and was very much fond of
listening music. The days just passed by and one day I had to face greatest
torture of my life. It all happened very suddenly and in a stunning manner for
me.
One day my parents decided to go on a
tour to South India. I was very happy as I used to enjoy the journey but to my
great surprise we visited Bangalore and there I was examined by a massagist and
my massage treatment started there. It was a very painful experience for me and
my parents as well.
As I became older and could understand
the things better I grasped the whole picture at Bangalore but at that time it
was a horror story. As I learned afterwards from my parents, the massagist at
Bangalore one Mr. Jadhav was serving in Indian Army as a jawan. He learned this
skill of massage with pig oil from his Guru in a village. He applied this
massaging skill to improve the muscle power of the persons suffering from
polio. A large number of polio patients were benefited from this massage and
the word spread through the country through newspapers and thousands of people
honked Bangalore Cubbon Park ground for the treatment. Many polio patients were
able to walk so the hope was raised for other paralytic and disabled patients
and they also rushed to Bangalore.
When my parents learnt about
improvement in a spastic boy from one our relatives they decided to visit the
place. My mother a pathologist could not believe the hear say but when we
reached Bangalore and saw the number of patients and heard the stories of
improved patients she was also impressed.
Mr. Jadhav examined me and told my
parents that he would be able to make me walk in eight months. He also put them
in a fix. He told them to start the treatment from tomorrow or you will not get
the chance next two years. Since you are a doctor I am giving you a chance out
of the turn. Decide fast. My parents were in a fix. They had planned the tour
to Kanyakumari and now they had to cancel everything and start a new treatment
within 24 hours.
As I understand it was quite difficult
for them to take the decision, but my mother talked to other parents there
suffering from cerebral palsy and saw the improvement in some patients.
Basically it was disciplined extensive physiotherapy, massage was only a
momentary treatment. There were many tables in the ground. The patients had to
hold the table with their hands lying on their tummy on the table and legs
dangling down. The patients had to move the legs continuously for two hours. It
was the exercise for the weakened muscles to gain strength and many polio
patients could walk independently.
Ultimately my parents decided to take
the chance. Hope is the worst enemy of the human mind I should say in some
conditions. Raju who was suffering from cerebral palsy and was not able to
stand at all had showed lot of improvement in six months and was able to walk.
After talking to his mother my parents decided to give me a chance. I was then
6 years old. My parents must have considered this as a life time chance for me
to become independent and without thinking about their careers they decided to
give me a chance.
As I recall those 15 months in my life
were the most painful months. We were living in a MLA hostel for few months.
Our routine was as follows. We used to get up early, do our morning chores and
go to the ground. Cubbon park ground was “the ground” for all patients. There
we had to wait in a queue for pig oil massage. Mr. Jadhav personally massaged
every patient. He had developed some technique which he called nerve pulling.
It was a fast momentary massage. We had to procure pig oil and carry the towel
with us for the massage. Depending upon our time to reach the ground we had to
wait in a queue for 1 to 1 and half hours. My parents had to hold me on their
shoulders for that period. Turn by turn they used carry me or hold me in a
standing position. After the massage we were allowed to have our breakfast.
That was the only time we enjoyed at that ground. We had found few friends
there and we used to eat whatever we manage to carry in the morning, together
having fun. Of course I can not remember all these details but found out later
from my parents I used to interact with other boys and girls in my stuttered
speech.
Most scary moment was the visit of Mr.
Jadhav to our exercise tables. Whenever we could sense his arrival (alarmed
caries of the patients) we used to swing our legs with as much force as we
could muster. Our maximum potential. If we can not do that he used to prick a
needle in our backs which was of course quite painful. When he used to depart
from our table again we used to do exercise relaxing a bit. After table
exercise we had to do walking in the ground. My parents used to hold me from
the backside and encouraged me to walk putting my legs one after another. It
required lot of effort and I tried my best. Around noon we used to come back
home. My parents used to do cooking and other household chores and after some
rest we used to go again to the ground at 4°clock. 4°clock
to 6°clock was again the exercise session.
When it was only exercise it was ok
but Mr. Jadhav had one more technique. Oh! My God! Even today when I remember
that pain I feel nauseated. It was known as Karate chop. Mr. Jadhav used that
technique to stretch the leg and remove the deformity. My left leg was shorter
than right leg. To lengthen it he decided to use that technique. It was a crude
method. He used to literally put a karate chop by his right hand on the area near shin of the leg it used to become straight. My
doctor mom saw it but could not know any specific reason of this miracle. Yes
it was called miracle by the patients. After this chop the leg was supported by
bamboo sticks and was bandaged. He instructed my parents to give me Rum at
night to reduce the pain. No painkillers. With the bandaged leg I had to walk.
When I think about it I am surprised. How I must have gone through all that? I
loved listening music and my distracter from the pain were gazals of Gulam Ali.
After coming back from the ground I used to listen the tapes and used to sing
along with it to forget the pain. It worked. All those difficult Urdu words of
the gazals I had memorized and could sing. “चुपके चुपके रातदिन आंसू बहाना याद है” was my favourite gazal.
Mr. and Mrs. Dravid (Rahul Dravid’s parents) helped us
quite a lot in Bangalore. They used to visit us and were very much impressed by
my singing gazals of Gulam Ali. When we met
again in Pune after many years they mentioned it.
I exercised with the bandaged leg for
three weeks. Then the bandage was removed. My legs became straight and I could
lift them and walk with support. My left hand is totally spastic. I can not
open the fist and do not have any grip. I do not have any strength also in my
left hand. I could not use crutches or stick or walker. My parents used to hold
me from behind putting their hands under my arms and I used to walk. My father
had some work in Delhi. At that time my grand parents used to come and stay
with me and mother. When it was not possible, my paternal aunt and my maternal
granny came to help my mother. My mother was pregnant then and my sister was
born in Bangalore.
One day to my horror Mr. Jadhav asked
my parents to obtain goat and cow’s urine. It was a hilarious story. My father
had to search for the goat and cow. He went to the nearby area and found that
people were aware of this treatment and were charging for the collection. He
kept the bottles with the cow owner and collected the urine in the evening. At
night they massaged me with that mixture. A smelly horrible night for me.
I do not know how it worked but I had
profuse sweating. My head used to remain very hot, as if having the fever but
thermometer always showed normal body
temperature. My mother used to worry about it. After that smelly horrible night
my head hotness disappeared completely.
Days at ground were passing at a great
speed. My legs became straight after removal of the bandage. My table exercise
time was reduced and walking time was increased. Raju the boy suffering from
cerebral palsy started walking independently after about 10 months treatment we
were hoping for that. This hope kept us at Bangalore for 15 months. After the
birth of my sister, it became quite difficult for my parents to continue the
treatment there. I was able to stand by holding something but I could not stand
or walk independently. I could not get the balance. Mr. Jadhav was asking to
continue the treatment for more months most probably my parents by that time
realized the bitter fact and accepted it. The fact was I won’t walk ever in my
life.
I do not know what was the reason,
treatment or community life at ground my speech and understanding improved. I
started speaking sentences and my vocabulary improved. My friends suffering
from polio used to talk to me and parents of these friends also interacted with
me. I was exposed to a normal person’s environment of different age groups. I
heard people talking in different languages Hindi, Marathi, English, Tamil,
Kannada, Telgu. Uptill that I was in contact with my family members and my
servants only. I used to sit in my father’s lap and listen his talking to his
friends. My grand parents always tried to talk to me. My uncle (I am very much attached
to him and fond of him) used to talk to me and always encouraged me to listen
to music, but it was a small world.
The first exposure to the outside
world was Bangalore. I used to cry a lot because of pain but was also enjoying
the company of people there. At home Gulam Ali was my buddy. My parents used to
be busy after coming home in their routine chores. Auntiji, our land lady was
Tamilian. She used to come and talk to me in English. She was a courageous and
affectionate person. She showered her love on our family. She used to prepare
delicious soft Idlis and sambhar which I used to relish. She even looked after
my little sister when my mother took me to the ground for exercise. I had to do
walking for at least half an hour in the afternoon before going to the ground.
All these attempts came to an end one day and my parents decided to go back to Delhi carrying me in their arms. From Bangalore I brought speech and improved working of my right hand which helped me in my future life.
When we reached
Delhi my parents concentrated on their lost careers. We were staying in a
society of Maharashtrian families. There were hundred families. We found a full
time servant who used to look after me and my sister (who was a toddler) when
my parents used to go for work our immediate neighbour were a family of five.
Grand parents and their son, daughter-in-law and a small girl of my sister’s
age. We became amalgamated like one family. Our doors always open and helping
each other in difficult times. Coincidently grandparents of that family were in
Lusaka and they looked after me then. Again after eight years we came together
and those were the wonderful years of my life. Later on I never got so much
attention, affection and care.
By then my parents realized the
futility of physical exercises but did not stop them. I used to do sit-ups and
had one tricycle which I used to ride on the internal roads of our society and
people used to stop by and talked to me. That was a great pleasure. I used to
see the children of my age playing cricket, badminton, football and running
around. I also had the desire to do all these things but my body was not under
my contro l. Except my right hand I could not move my limbs voluntarily. I
could not stand without support. I could not walk without support. My parents
and my attendent made it a point to walk me whenever required i.e. going to a
toilet, climbing the steps, (our flat was on second floor, no lift) walking on
the internal roads. I used to receive occupational therapy for my left hand but
that hand was obstinate. It remained as it was. Even today I can not use that
hand. I become very tense when anything has to be done to that hand, even
cutting the nail of my thumb is a stressful moment for me and mother.
I did not show any improvement in my
physical activities and so my parents decided to concentrate on my mental
abilities and my learning lessons started at the age of nine years. My mother
tried to teach me recognizing alphabets and colours and numbers. She had to do the
job and so she could not find that much of the time required for me. She had to
look after my sister also. That also she could not do because of the time which
she had to spend outside. At night she used to be very tired and we (myself and
my little sister) never heard any bedtime stories. Granny of the neighbour used
to tell us the stories along with her grand daughter. My mother must have told
her friends about her desire to educate me and one day one of her friends
accepted the challenge. My learning started that day.
My teacher cum friend cum Aunti was a
very sweet beautiful lady of my mother’s age. She had a humorous nature and a
knack of teaching. She was a very popular teacher in a renowned school in
Delhi. She actually did “Shree Ganesha” of my learning. I learnt all the
alphabets and started writing them with great efforts. I learned English
language first. She used to come to my place and used to spend time with me to
make me understand and write the letters first. She used tell me different stories
and jokes. We used to have fun along with learning. Her efforts resulted in a
beginning of a golden era of my life. I learnt to write all English alphabets
and numbers and remembered them. It was a miracle for my parents when all the
doctors in AIIMS had told that my IQ was very much below average and I won’t be
able to learn anything. Many of my spastic friends did not have this miracle
and they could not speak or write or learn. God has given me this opportunity
to learn and understand the language.
I used to be at home and always
pestered my parents and my attendant with the question “What should I do?” My
attendant used to play with me. We used to play ball and bat or badminton for
some time. My attendant had to do the household work also. He used to put on
music on tape recorder and I used to sing along with the songs. I had a good
ear for music. I could understand the classical music. We had good collection
of LP -S of renowned singers like Bhimsen Joshi, Pandit Jasraj, Prabha Atre,
Parveen Sultana, Kumar Gandharva. I used to listen and was able to remember the
‘Ragas’ and was able to sing those songs. Taking into consideration this, one
of our friend’s grand mother decided to coach me in music, our flat was on
second floor and she could not climb the steps. One of our friends were having
a daughter who was very much interested in music but she was totally bedridden.
It was decided then that my music coaching class would be at their ground floor
place. Aji (as she was called by everyone in society) used to teach me singing
with the help of harmonium I used to learn the words of the songs without any
problem, and used to remember. Those classes I enjoyed very much. My parents
were also looking for the school for me. One day brought the turning point in
my life. Principal of newly opened school in our area came to our house seeking
admission of children. My sister was then three years old and was attending a
nursery school. My mother took the courage of asking her about my admission to
the class 1 of the school. Surprisingly she accepted the challenge and I
started attending the school. My attendant used to come with my Tiffin and was
able to manage all my needs. I enjoyed the company of normal children school. No
one made any fun of me or tease me. They always helped me. I used to go by van
and many a times my principal used to carry me in her arms from van to my
class. She was a kind hearted, spirited human being of Shikh religion. She took
my responsibility and teachers in school treated me as a normal child and gave
me the home work.
By this time my mother had started her
pathology laboratory at home and my father became busy in his C.A. practice. My
parents were finding it difficult to take my home work. Here again one of our
friend’s young energetic enthusiastic wife came to our help. She had married at
the age of 18 after her twelth exam and completed her B.A. after marriage. At
that time she was housewife and did not have any responsibilities of children.
She happily agreed to take the responsibility of my home work and my education
at home became fun for me. She had a
very good sense of humour and was a good taskmaster. She used to make me laugh
and at the same time put pressure on me so that I would remember the spellings
of the words. This coaching helped me in future when I studied at home for my
tenth examination. I used call her kaku and she had one more ace at her sleeves
to make me work hard. She had pet dog and I was very much afraid of the dog, she
used to threaten me, “If you don’t remember the spelling correctly and write it
for five times I will bring the dog.” Oh! This threat used to work like
anything. I was so scared that I used to try hard and remember the spelling and
write it down ten times. Even though I was then 11 years old I was very much
scared of any moving object.
Kaku had other responsibilities after
one year of my schooling and again my mother was worried. By this time my
parents had taken a rented place for my mother’s lab and father’s office. My
sister had admission in other school for her senior KG. I was then in third
standard and had a lot of home work of all subjects. Maths was my real enemy.
To remember the tables and do the calculations was a great challenge for my
affected brain.
With my good luck this problem was
also solved by our neighbour. She was also a house wife and could spare
afternoon time for me. After coming from school I used to go to her place which
was at ground floor and study. She was very strict with me and because of her I
could clear my third and fourth class examinations.
After completing my home work I used
to go for my music class and later on used to sit on my tricycle and roam
around on the internal roads of our society. People of all age groups used to
come to talk to me. This has such a strong impression on my brain that even
today I feel the life in Delhi is just like that and I always crave to go back
to that life. Even today I tell my parents that I want to go there and live
there. They try to tell me that everything is changed now and Delhi life is
not, what it was so many years ago but still according to me Delhi is the best.
In that society we enjoyed festival
life as well. During Ganesh festivals I gave a public performance of my
singing. My sister also took part in skits along with her friends. When she was
young enough to dance, they had group dances every year during Ganesh festival.
It was seven days festival and every one participated with great enthusiasm. It
was so hassle free and organized as if it was of a family. A community lunch
used to be there on Sunday after “Ganesh Visarjan.” We really enjoyed all these
festivals. There was a harmonious, good, encouraging spirit in young, middle
aged and old people of society. This type of life I could not experience later
on in any of the societies, we lived in.
My parents had organized my thread
ceremony when I was 12 years old and the families of our building helped us.
The ceremony was arranged on the terrace of our building and all the families
in our building helped us to arrange the function. Our immediate neighbour
allowed us to use their flat for arrangements required for the lunch. My
father’s brother – a well known learned Acharya of a Sanskrit Pathshala in
Banaras came for the rituals of thread ceremony. His recitation of the Mantras
was so powerful that everybody became spellbound. All and all the function was
a memorable one.
Unfortunately we had to take the
bitter decision to leave that society and Delhi in 1990. The reason for this
decision as I could understand later on, were threefold –
1)
The flat was on second
floor our attempt to exchange the flat with a ground floor flat failed due to
some technical problems. My parents could foresee the difficulties in carrying
me two staircases, as I would grow.
2)
My parents had to spend
lot of time outside to earn the living, as both of them were practicing. That left
us with the attendant. My sister was just six years old. This was also a point
of worry for my parents. My mother could not drive any vehicle because of her
hearing problem. All these limitations forced them to take the decision to move
to Maharashtra where my mother could get a job in a private medical college. It
was a teaching job.
3)
My education in a
normal school in Delhi was not possible because no other school was ready to
take my responsibility along with normal children. Special schools were not in
a near by area. My parents enquired about Pune and got a good feed back of
special schools in Pune. The school I was studying at that time was only upto 4th
standard.
It
was a very great emotional turmoil for me to leave Delhi. My beloved
grandparents and uncle were in Delhi. I was very much attached to them. Though
were not living together, we met each other frequently. It was an almost hour’s
drive from our house to their place. We used to travel on my father’s two
wheeler. When my sister was very small I used to stand in front and my mother
used to carry my sister in her arms. When I grew in height and my sister could
stand in front I used to sit in between my father who used to drive the scooter
and my mother who used to be a pillion rider. It used to be a thrilling
experience for me till my father brought the Ambassader car – his first one. He
bought it from a friend in Pune and we drove back to Delhi, not knowing at that
time that the car liked Pune very much and wanted to go back to Pune.
Our decision to leave Delhi and go to
Pune resulted in a great furor in our society as well. My mother was the only
doctor in the society and many families had come to rely on her for their minor
problems. Many families in the society
tried to persuade my parents, but destiny had some other plans in storage for
us and so we left Delhi in May 1990 and went to Pune.
One family in our society had a small
one bedroom flat in Pune. They agreed to give us that flat on rent. My parents
sold out the flat in Delhi and we moved to Pune with great hopes for my further
education in Pune.
My parents tried for the normal school
first but not a single school was ready to take my responsibility though I had
4th standard pass certificate ultimately I was admitted to a special
school which was for slow learners and disabled children. The school was
founded by a well known phychologist, activist and social worker, who had
studied in a foreign university.
One teenage girl used to accompany me
to a physiotherapist and then to the school, I was not at all mobile so in the
school also attendants had to carry me.
I was interested in music so my
parents had purchased a small Casio for me. I used to play it with three
fingers of my right hand. I could play few tunes. The principal of the school
advised my parents that I should bring the Casio to the school so that I can
learn it in a better way. Instead of carrying it everyday it was kept in the
school. In the school the teachers tried to teach me science and maths. My
damaged brain could not cope up with that. I could grasp the languages but the
other subjects I found difficult.
One day it happened that my Casio was
not found in the school. The teachers in the school were saying that the girl
who used to accompany me to the school has carried it to my home and did not
bring it back. The girl was saying that she had kept it in the school. The
matter was of great discussion in the school and at home.
During parent-teacher meeting my
mother voiced her views regarding this loss of Casio in the school. She was
very much criticized by the teachers and principal of the school. I could
understand the things and was very much disturbed. I had few friends in the school
and one teacher who was quite considerate. Otherwise I was not very happy in
that school. One year passed by like that. At the end of the session the
principal of the school advised my parents that there is no point in giving me
formal education. According to her my IQ was very much below normal and I won’t
be able to cope up with the study. She advised them to teach me only
instrumental music. My parents were very much disturbed and disappointed.
During first summer in Pune we were
told that there was one person in S.P. college swimming tank who coaches
disabled persons. Swimming is considered a very good physiotherapy for rigid
muscles. My parents enrolled me in his class and our struggle started. In the
evening all of us used to go to the swimming pool. My sister also learnt the
swimming. I enjoyed my swimming class but I could not swim independently. My
coach had to carry me in his arms. I tried hard to move my legs but could not
do it vigorously. It was a tremendous job for my parents to change my clothes
after swimming. We could not find any full time attendant in Pune as there was
in Delhi, so my parents had to manage. 2 months of summer vacation everyday we
used to do this exercise.
When I was attending the school there
was one programme at Bal-Kalyan. (A centre developed to recreate disabled
persons.) There was a swimming pool and a coach there for disabled persons. The
times were in the afternoon. My mother had a full time job and my father also
had his practice, so we engaged an autorikshaw to take me to the swimming class
and bring me back. I could sit in rikshaw holding the bar. The coach and helper
of the centre took my responsibility. My school had its last few days remaining
and my principal had said that I won’t be able to learn anything so my parents decided
to discontinue that school and my swimming exercise started.
Everything went well for few days and
afterwards it started falling apart. The coach, my rikshaw driver, the
attendants there tried to shirk their work and many a times I used to sit there
and watch others to swim or we did not reach the destination. I could
understand what was happening and I told my parents about it, and it was the
end of my swimming class.
Since coming to Pune I was going to a
private physiotherapist for my exercise. A girl used to take me to the clinic
and used to help the therapist with my exercises. They tried their level best
to teach me at least crawling, but I could not take my weight on my knees. I
used to move forward lying flat on my stomach pushing my body with great
efforts. This type of movement was not possible on uneven surface.
One day the therapist told my mother
about another school in Pune for special children. My parents visited the
school and an optimistic view was given to them about my education and
occupational therapy and physiotherapy.
I started going
to the school. Other children in my class were not able to speak and I could
not find anyone to talk except my teachers. Teachers tried to teach me again mathematics
and science. I was regularly given clay molding exercise for my left hand and
passive exercises for my legs. The Ayas in the school could not learn the
technique of making me walk. To my regular need to go to loo, they used to
carry me. One Aya used to hold me with legs and other used to hold my head. It
was quite a humiliating experience.
For one year I attended that school
and again the report from teachers was that I won’t be able to learn anything.
I did not have any friends except one girl she was able to talk some words.
Later on two boys who could speak properly joined the school and we became
friends and are still in contact with each other.
In February 1992, an accident took
place which was a sort of turning point in my life. My mother’s father expired
at Nagpur and she had to go there for his last rites. We had a lady servant in
the house but she was not able to pick me up. I was then fifteen years old. My
father felt some chest pain. He told us “I am slightly feeling restless and will
just find some doctor.” We did not know many people in Pune at that time. He
went on his scooter to search a doctor. He found one and doctor examined him
and took the ECG. Then my father was told that he was suffering from heart
attack and should get admitted to the hospital. He told doctor “I have a
disabled son and a small daughter at home and my wife is not here. I just can
not get admitted to the hospital. Give me some medicine to reduce the chest
pain and I will rest at home. Tomorrow when my wife comes I will get admitted.”
Doctor was shocked to hear this and admire my father’s strong guts. My father
came home and told us that doctor has advised him to take rest. He was resting
for some time but then I had to go to the toilet. In his physical condition it
was a great task for him somehow with my little sister’s help he managed it and
was lying on the bed. Fortunately for all of us my maternal uncle who also was
having a job in Pune returned from Nasik where he had gone for my grandfather’s
‘asthivisarjan’. As soon as he came myself and my sister started crying and
told him about my father’s ill health. He talked to the doctor and arranged for
the auto and my father was admitted to the hospital.
Next day my mother arrived and was
shocked to receive the news of my father’s heart attack. Immediately she went
to the hospital. In her presence in ICU again my father suffered from second
heart attack but with God’s grace he was saved.
He recovered and came home. He was
advised to take complete rest. My mother’s principal was very kind hearted
person and he accepted her leave application. The doctors had advised an
angiography for my father so that further treatment could be decided. As my
mother was a pathologist my father interrogated her about future treatment and
when he learnt about angioplasty or By Pass Surgery he refused to do
angiography. I was always there in the house and could hear the discussions. Of
course I could not understand everything but I could understand my father’s
concern about handling me and money problem.
My mother was very much worried about
my father’s health but she had to do the job for our needs. After three months
my father also started his work. At the back of their minds, there was always
the fear. My school continued this year.
In 1993 my paternal grand father
expired in Delhi. I was very much attached to him. It was a great loss and
sorrow for me. My father had gone that time alone to Delhi when news of my
grandfather’s serious illness was communicated to us. We did not have any
person or relative who could accompany us to Delhi for his last rites. My
mother was suffering from severe attack of spondylitis and was advised not to
lift me. It was a state of a great mental torture for me not to go to Delhi. At
that time air travel was out of our reach and we could not go. I used to blame
my mother for that, not understanding that time her condition. Now I can
understand what turmoil’s she also must have gone through.
One day my parents visited my school
and saw that I was just sitting in the class. My teacher was doing her knitting
and they also saw how Aya’s were carrying me. My father could not assimilate it
and decided to discontinue my school. I used to sit at home with a lady servant
in the house and used to watch the T.V.
My parents could not digest the fact
that I can not be educated. They visited SSC Board office and enquired about
possibilities of my giving examinations but they did not get any positive
response. The rules of the Board were quite rigid. At that time my parents
learnt about National open school of Delhi. They have open policies of
accepting the students and there was choice of subjects. By that time I was
able to work on the computer, and my parents had purchased a Desk Top for me.
My little sister did the computer course (she was studying in 5th
class) and taught me operations of the computer. In the choice of subjects for
my tenth examination of National open school I could opt for computer subject.
Other subjects I could take were English, Hindi, Business study and economics.
Computer related subject was known as word processing. With the help of our
friend in Delhi we could get registration of National open school on the basis
of my 4th examination certificate of the school in Delhi in 1994.
National open school had a centre in
Pune. It was far of in a crowded area. Every Sunday they had some coaching
classes. It was practically impossible for my parents to take me there. They
had printed books and guides in the form of question answers. After enrolment
we got the material from the centre in Pune and my lonely fight for the grasp
of different subjects started. I was not as lucky as I was in Delhi. In Pune we
could not find a teacher who could come to my home and teach me. My parents
used to give me the portion to cover everyday and sitting alone at home I had
to study.
At
home front it was a different story. Full time servant was not there. A college
going boy used to come to attend to my morning requirements. He used to be
there for one to one and half hour. My sister used to go to school and 8°clock
my mother used to go to her college. Whenever my father used to have work (most
of the times outside Pune) I used to be alone at home. Considering all these
facts my parents started searching for the suitable wheelchair for me. At that
time the search was not at the click of the mouse.
In 1994 we went to Delhi for the
rituals which are performed after one year of the death of the person (Varsh
Shradha). We came to know about a wheelchair manufacturer at Peeragadhi. He had
the company called SAGE. He used to manufacture tailor made wheelchairs. At
that time battery operated wheelchairs were very costly and imported ones only.
Since I could not use my left hand at all I required a wheelchair which I could
operate with my right hand. It required a propeller with a gear box.
When the owner of the company, a
compassionate kind hearted sardarji saw me, he searched the manuals he had and
found a design of a wheelchair which had a gear box and a propeller which could
be fitted on right wheel of the chair. With the help of gear box it was
possible to change the directions of the wheelchair. My father ordered the
wheelchair and I became mobile. Our furniture was arranged in such a way that I
could move around in the house. I used to study for some time, then used to
have my food which was kept in a covered thali, drink water, watch T.V., work
on computer. So being alone at home was not much of a problem. By nature I am a
social person. I want some company. I can communicate to limited extent but I
feel the need of talking to someone. This desire I had to curb most of
time in life in Pune.
Our neighbours in Pune were not very
friendly. I had only one friend who used to come to play cricket with me some
times and used to share some gossip. Otherwise I was very lonely.
After registration for the tenth
examination of National open school I studied the languages and on my own,. for
business studies and economics my father helped me. For computer my sister was
my coach. My mother used to take leave whenever she could, at the time of the
examination and used to take my question answer sessions.
We had to apply for the writer and
some extra time for me. For this part I was really lucky. The in-charge of the
Pune centre was a very nice person. He arranged everything and co-operated. In
first attempt I could clear three subjects that are English, Hindi and
word-processing. National open school is
a really open system. You can clear one subject at a time. I
required two more attempts to clear my two subjects, ie- business study and economics.
In 1996 I cleared my tenth examination.
Here I will like to mention one thing.
The school which I had attended in Pune and declared that I cannot learn
anything came to know about National open school from us and got their students
enrolled for the examination. These students are known as slow learners. I have
friends from that school and even today we are in contact. These students are
physically fit so they could write their own papers and could study further.
National open school has 12th examination also. My parents wanted me
to study further, but I declined. It was too much for my affected brain and I
could understand by that time the strain that I was putting on my parents.
There was again the question mark what
is next? At that time I was able to type on computer with my three fingers. My
mother was teaching pathology at Bharati Vidyapeeth Dental College in Pune. In
the beginning she was teaching Medical students also. The department of
pathology of Medical College decided to write a practical pamphlet for the
students. All the staff members were allotted different chapters. Chapters were
written but the question was who would type it on computer. In 1995 there were not
so many computers in Medical or Dental College. My mother asked me whether I
would like to take the job. I agreed happily and then repented like anything. I
had forgotten that it was doctor’s writing. Oh! My God! I could that time
understand all the jokes about doctor’s handwriting. I used to wonder “If a
doctor writes a love letter to a non-doctor, lover, the lady will be in real
trouble. She will have to go to the chemist to read it.”
My tenacity and patience and joy of
working kept me for hours together to type out all those manuscripts. Ultimately
after 6 months of my and mothers labour (she had to check it) the work was
completed. It was 250 pages of computer. The publisher gave me 2500 RS (10 RS
per page) for my labour of around 6 months. That was my first earning and a
valuable one. The pamphlet was published by the publisher and he earned a lot
of money on that. The department put a note of thanks in that pamphlet. That
was the end of one chapter. Again the same question ‘What next’.
This time my mother tried for typist’s
job for me in Bharati Vidyapeeth Dental College. She met a number of times to
Dr. Shivajirao Kadam and Dr. Patangrao Kadam even their daughter, son and wife.
Every visit they used to say “We will see.” Ultimately after a year she lost
hope and started writing notes for students to give me some work.
I typed out the notes. This work
helped me a lot. I learnt difficult spellings and could retain them. This work
was over in 6 months.
In 1998 my father again suffered from
heart problem and decided to undergo angiography and By Pass Surgery. Those
moments were of real torture for me and my sister. My uncle, aunt and my grand
mother came to Pune from Delhi to help my mother. I could not go to the
hospital to visit him for almost 4 days. Those days were very painful mentally
for me. I had to wait at home, all the time worrying about father. As soon as
phone call or a person used to return from the hospital I used to ask “How’s
father?” It used to be a great relief to hear that he was well. The operation
was successful and after 7 days he returned. He was asked not to lift weight at
least for three months. We did not have a full time servant. My mother did not
want to take any risk. She was sure that if the need arise my father would lift
me, we had a driver at that time so my mother started taking me to the college.
There was a lift in the Medical College and I used to sit in the department.
The driver used to be around if required. After finishing her teaching mother
used to be with me I had to sit there doing nothing. Some staff members used to
chat with me when they had time. That was the most boring period of my life but
I did not have a choice.
Three months after surgery my father
resumed his work
During the first years of our stay in
that society Ganesh festival was arranged and my parents encouraged me to play
Casio in the entertainment programme. After that event the opinion about me
somewhat changed and many people started talking to me and were friendly.
In 2000, the millennium year my sister
had given her SSC board exam. My father had a great desire to visit USA and see
the country. The visit was planned during the summer vacation of my mother and
sister. Fortunately one of our oldest friend visited us at that time and agreed
to help us with sponsorship letter so that obtaining Visa would be easier.
Internet connection we had by that time,. Myself and my sister were proficient in
using the net. However my parents S found out our friends and relatives in USA
and started contacting them. Everyone’s response was encouraging. We planned
our visit with the help of Wing’s Travel. My parents enquired about tours from
SOTC, but they were reluctant to take the responsibility of a wheelchair bound person.
They told my parents that it would be a hectic affair and we won’t be able to
cope up with that. Later on we found that it was a correct guidance.
My parents planned all dates and
tickets to tour America from India only and when we boarded the plane at Mumbai
our programme of one month and 10 days was fully organized, of course here I
must narrate the anxious phase of getting visa before narrating the tour of
America.
To obtain visa we had to go to Mumbai
and stay there for 2 days. My maternal uncle was staying in Mumbai. He arranged
a car and driver for us so that we could reach American consulate. My father
went early in the morning and stood in the queue. We were supposed to reach by
8:30. The driver came late and we were delayed. My father got the token and was
in panic. Somehow or the other he convinced the people and we could enter the
consulate. I had heard many stories about rejection of visa by American
consulate. Many people had told us that, the consulate would not give me the
visa. My uncle said to me, the previous night in the presence of five ladies of
our house “If by chance the interviewer is a lady, then you will have a
problem. Ladies are quite “Khadus”.” Of course all the ladies objected and we
had a lot of hilarious and taunting haunting discussion. That was all playing
on my mind when my sister wheeled me in front of the interview booth. Oh my
God! A lady was sitting there. I had my morals down. I thought here goes all my
plans down the drain. To my great surprise she only asked my name and we were
asked to collect our visa in the evening. So all the ladies are not “Khadus”!
In fact throughout my life many ladies have helped me to achieve whatever I
have achieved today I must thank all of them.
Our tour was arranged and we had to
board the plane in early morning from Mumbai. My parents were worried about the
trip. One of our expert foreign visiting friend said “Once you cross the hurdle
of Mumbai Air Port you won’t have any problem what-so-ever at any point of your
foreign trip.” How true it was, we came to know. At Mumbai Air Port the officials
had lot of hassles about the wheelchair which we were carrying. We required the
chair at our stop in Amman, as we were travelling by Jordanian Air lines. (This
had cheapest air fare.) The officials were saying that “The chair will go
directly to New York along with your other baggage you have to pack the chair
and seal it.” We had overnight stay at Amman arranged by the air line and next
day we had the flight to New York. The officials were just not able to
understand our difficulty. It was just not possible to go through this stay
without my wheelchair. With lot of argumenting and convincing, one person could
at last understand and made the arguments. The wheelchair was available at the
air port of Amman.
In Jordan the hotel was a posh one and
our dinner was arranged at the hotel. It was a self service buffet dinner.
Different nonveg dishes were displayed with the boards of their names which we
could not understand I am very much fond of chicken, mutton, fish. My father
filled up my plate with different dishes. When he had taken one dish and moved
on to another one, my sister heard someone saying ‘beef.’ She immediately
rushed to my father and told him about it. Ofcourse I could have digested the
idea of eating beef.
Next day our journey towards New York
started. Oh! It was a long flight but quite comfortable. We could enjoy
watching the movies, listen to music and time flew. There was another surprise
waiting for us on New York Air Port. As we have planned our tour from India on
our own we had arranged someone or the other to pick up us from Air Port.
Except New York. In New York we did not have any contact. Experienced travellers
had advised my father, “You don’t have to worry. You will require lot of time
there to get through the formalities of clearance. During that period you can
search for a hotel. There are generally stalls of different hotels, comfort
inns etc. so you can choose a reasonable (within your budget) hotel. So don’t
worry.” The person did not know American rules and regulations.
When we landed at JFK an attendant was
waiting for us with our wheelchair. He took us to immigration counter especially
for disabled people. Others were waiting in a queue. In 10 minutes all the
formalities were completed, our baggage was collected and the attendant
escorted us outside the air port.
We were really surprised and baffled.
We could not see any stalls of hotels or anything. We were standing outside the
airport in a windy, chilly atmosphere, not knowing what to do. My father then
saw a bus having the name of a hotel which we had seen on internet. We did not
have any choice, so father contacted the bus driver. The bus was empty. The
driver immediately came, kept our luggage in the dicky of the bus, picked me up
and made me sit comfortably in the bus, folded my wheelchair and kept it in the
bus. The bus had only one other passenger and the driver drove us to the hotel.
It was a five star hotel and they accommodated all 4 of us in a single room.
This was our first experience of a hotel in US. We had to understand lots of
things about opening the door, opening the tap, drinking tap water, showers and
mixers, locking the bathroom door. Oh! It’s a quite funny experience. The
mechanics they have are really different but once you know about, then very
simple.
Next day we planned the tour of New
York as our flight to Seattle was in the evening. The fifth person in our bus
turned out to be a Maharashtrian person and was ready to share the expenses of
the tour. The hotel arranged for a taxi. The taxi driver was a Carrabian
person. My mother could not understand American accent but I could communicate
with people in America.
We took the tour of Manhattan, saw
twin towers, statue of liberty. Wherever my father felt I should be seated in
the taxi, the driver chatted with me and I was able to talk to him. He was a
fan of Hindi serials, movies and music. So I had very enjoyable moments with
him.
We had our flight from JFK in the
evening we packed our bags and were ready to enter the bus which had come to
pick up the passengers at the hotel. The doorman of the hotel did not allow us
to enter the bus. We were surprised. We could not understand his behaviour. The
reason behind his behaviour was clear very soon, to our great astonishment. We
were never accustomed to this type of treatment in our own country. He had
ordered a bus having wheelchair lift from his walkie-talkie. It was a special
bus the hotel was having for wheelchair bound people. The bus arrived only for
us. We were the only passengers in the bus. Can you expect such a type of
facility here? We were thrilled. The bus had a remote control operated lift
which used to come to the ground level and we had to just push the chair on it.
With the remote button the lift moved up till the door of the bus and wheelchair
was pushed in the bus. There was a lock for wheelchair so that with the
movements of the bus the chair won’t move. Then the lift was folded and door
was closed. I was so much fascinated with that idea. Oh! I dreamt about it
happening in India. To my great satisfaction I could see at least one bus which
was wheelchair friendly at Delhi airport after 10 years. Something is better
than nothing.
As I came to know later on, the
American disabled people also had to fight for all these amenities but once the
law was made. It was followed every where. Politicians in our country visit
this country to enjoy themselves I was just wondering! “Are they blind?
Couldn’t they see the type of infrastructure, roads, and cleanliness? When they
stay there they abide all the rules and regulations. Nothing can be thrown
there on the roads. As soon as they come back they forget all this and are
proud of Indian culture. They do not mind garbage on the roads. They only think
of making their houses garbage free and political system studded with garbage
i.e. Brashtachar (corruption.)”
Oh! It was some diversion from my
story narration of tour of America. So I will proceed now from New York. We had
some funny experience when we boarded the plane at JFK. The plane was delayed
and crew members were moving in panic. They came to our seats and asked to show
our hand baggage. My mother had carried one small suitcase which contained her
valuables and a beautiful silk saree. As soon as she opened the bag the
passenger / an American person) from nearby seat exclaimed “What a beautiful
blanket!” We had to curb our smiles since we were not able to understand the
situation. They were saying “patrol” and were searching everywhere. My sister
could first understand the panic and said “It must be the smell of our sweaters
which were dry-cleaned in India.” (At that time patrol was used.) We had
collected the sweaters just one day before our tour and they really smelled of
patrol. Some passenger from the nearby seat had complained of the smell of
patrol and therefore the search was going on. Once the crew of the plane had
checked everything and were satisfied, the flight took off. The pilot
apologized for the delay.
In Seattle it was a wonderful stay. I
could visit Microsoft office and was so much impressed that I said to my sister
(she had then given just 10th exam) “You become a software engineer
and come here. Bring me also. I want to live in this country.” I knew I am day
dreaming but the facilities and amenities for a wheelchair bound person are so
amazing there.
From Seattle we had planned our next
destination Sanfransisco. I had a uncle (my mother’s cousin) in Cupertino. He
came to pick up us at Sanfransisco airport. The stay with him was wonderful. We
saw Sanjose’s Tech Museum and our first stop IMAX movie. In the theatre there
was a separate entrance for wheelchair bound person. I could enjoy the movie
seating comfortably on my chair without troubling my parents to lift me and all
that.
We enjoyed our visit to Sanfransisco.
My uncle showed us all the places. Fisherman’s Warf, Lombard Street, China
town, Sea world, underground museum. Even we had a meal in Chinese restaurant.
I drank Chinese green tea and liked it. My sister and mother had lot of problem
as they were vegetarian. My uncle ordered a vegetarian delicacy for them. It
turned out to be prepared from tender shells of sweet peas and shingada (fruit
of a water plant). From Sanfransisco we had planned a bus trip to Los-Angeles.
It was a normal bus. The bus route was near the sea and we enjoyed beautiful
natural beauty. We reached Los-Angeles bus stand which was in downtown. We had
a friend in Los-Angeles. He came to pick up us. He was quite scared and worried
as it was night time and downtown. This was the darkest side of America we
experience that day. With God’s grace we reached home safely.
We had arranged tours to Disney-land,
universal studio, Sandiego and Las Vegas staying in Los-Angeles. Our friend
there helped us for these arrangements. In Disney land we had a priority. For
wheelchair bound persons there is a separate entrance and no queue. I could
enjoy all the rides there without any problem. Since we did not have to stand
in a queue we could enjoy maximum rides. Even some horrifying rides like “Back
to the future” I could enjoy.
In universal studio we enjoyed 3D IMAX
movies. We saw how the shooting of the most difficult scene from the movie
“House of wax” took place. There were fifteen minutes shows where entire set
was burnt during the enacting of the story and again rebuilt for next shows.
Amazing it was! To go to Jurassic Park there we had to climb down the steps. My
father said “its better we should not go. How can we climb down and up these
steps?” An attendant saw us and he directed us to a mini bus which had the
wheelchair lift and locking system. There were other passengers on the
wheelchair also. We boarded that bus, went down, saw everything and the bus was
again waiting for us. Can you just imagine this type of facility here?
We took a bus tour
to San Diego. It was a water world tour. The dolphin and otter shows were
fabulous. I could enjoy everything. The bird show and animal shows also I could
watch. No hurdles anywhere for wheelchair. When we returned at night our friend
who was supposed to come to pick us from bus station was late. It was a
downtown. Not a single person was there. The bus driver and the guide (she was
a lady) waited there with us. They said “It’s our responsibility to see the
departure of every passenger safely.” We were really overwhelmed.
From Los-Angeles we went to Washington.
Our friend in Washington showed us everything there. We saw the elite colonies
of Washington (of course from outside). Beautiful bungalows and lonely plush green
lawns. No one was playing or walking on the streets.
One of our friends was staying at a
place called Great falls near Washington we went to stay with them. My father’s
friend was working part time in a library in Washington. She used to go by
train. We decided to go with her and see the museums and in the evening return
by train with her. Here I must mention travel in USA is not at all easy. Unless
you have a four wheeler vehicle you can not move around. I do not know about
local bus service because we did not travel by that mode but to reach railway
station you require the car. You can park the car there and travel by train.
(Taxi service is also available but expensive.) Following our friends
instructions we reached the museums. Throughout the day we were walking. We
were thrilled to see the museums.
The railway station there is
underground. When we came in the morning we found the lift to come to the
surface. There are boards everywhere to indicate the way to the lift which can
carry wheelchairs. We did not have any difficulty in the morning. In the
evening when my parents and sister were very much tired we saw an entrance to
the underground railway station, nearby. Considering that there would be a
lift, we went there. There was no lift. There was an escalator. My parents were
wondering how to find the lift and we saw that a lady came on wheelchair. She
stood with the help of attendant on the step of escalator and the person
accompanying her took the folded wheelchair. My parents thought they could also
do that, so my mother stood on the step making me stand and holding me and my
father carried the wheelchair. When we had to step ahead my mother realised
what mistake she had done. To lift me and carry me was a dangerous affair but
with God’s grace we did it safely. When we went ahead there was another
escalator. My parents had to do that exercise again. Afterwards my mother was
trembling with fear. She had taken the risk without understanding the danger in
it. Anyway we took the train our friend was waiting for us and we reached
safely to our destination.
From Washington we went to Detroit. In
Detroit my mother’s dearest friend’s daughter was staying. They were a young
couple with a 10 months small boy. They had to arrange for a second car to accommodate
us and wheelchair and our luggage. We were overwhelmed with their hospitality.
They took us around the town to show us the car museum and zoo. My mother’s
cousin brother also came there to visit us from Kala-Mazu and we had a nice
time. I enjoyed American real non-veg pizza there.
From Detroit we went to Buffalo by bus
and from there to Naigara Falls. Here I do not have the words to describe the
beauty of the fall. Yes! I could see the fall. When we reached there and took
the tickets for maid of the mist boat we do not have the idea of the no. of
steps ahead. When my father saw the steps he said “Oh my God! How we are going
to take Kedar down? I think two of you go ahead I will wait with him.” We were
looking around and an attendant came with a lift. He arranged the lift on the
railings of the steps and put my wheelchair on it. A remote started the lift
and I went down. My father was astonished and took the video shooting. I could
accompany my family on the boat. The boat was crowded but my wheelchair was
arranged near the periphery of the boat and I could see the falls, enjoy the
scene fully.
At night again we went to see the
lighting at the falls. In that area it becomes dark late at night around
9°clock. We waited there till 10°clock to see the beauty of lights changing
colours from Canada end and American end and had a feast of beautiful colours
to our eyes. Eyes became tired but mind became fresh after seeing the beautiful
collage of natural and artificial beauty.
While coming back we came across an
ice cream parlour. It had some 63 flavours. Unfortunately it was in a closing
phase but we could enjoy the softy whatever was available.
Our trip to America ended in a boring
fashion. We travelled back by bus to New York. We were told that we can
check-in our baggage in the morning for evening flight. We had planned to go
around New York once again but actually we were told that we can not check-in
our baggage. We could do that only two hours prior to our flight time. It was
not possible for us to carry the baggage around. Taxi was too expensive so we
had to stay whole day at Air Port. It was a boring period and journey back was
too tiresome. We were just sleeping for 48 hours after reaching Pune.
Here I would like to mention our
experience in India. Whenever we had to go anywhere my parents used to enquire
about the infrastructure. This was essential to know the accessibility to
wheelchair. We had planned a trip to Raigad along with my uncle’s family. My
parents went all the way to jog enterprises to enquire about the Ropeway. They
asked about carrying of the wheelchair by Ropeway. The person there assured
that a wheelchair bound person can go through. Enthusiastically we planned the
trip and went. It was true that wheelchair bound person could go by Ropeway. We
got down and were astonished by the condition there. We had to climb at least a
distance of a furlong to reach the destination. The surface was such that it
was impossible to push the wheelchair. We were at loss. There was nothing
around so that I can stay alone and others could go ahead and see the place.
Everybody’s mood soured. Fortunately my cousin had a physical and mental
strength to carry me in his arms. He climbed that difficult hill area and I
could enjoy the trip. Luckily he was with us. Otherwise we would have to wait
there and come down by the next Ropeway trip. The person who gave us the
information did not think of this difficulty because he was not aware of the
problems a family could face with the wheelchair bound person.
I always feel that attitude of common
people here about disabled persons is of a pity. There is lot of campaigning
going on and many voluntary organizations are making efforts to get us in
mainstream, calling us ‘differently able’ persons but I feel really sorry to
say that I do not think attitude of people will change so fast. A person who is
totally dependent on someone can not get any chance of earning his living. The
jobs which government claims are reserved for disabled persons are for mobile
people because of lack of accessibility for wheelchair.
To continue my story, after coming back
from America, there was again the same question. What should I do? I was just
passing my time by seeing T.V. and using internet. My parents then found out
about ‘Infoway’ an institute nearby. They enquired about the DIT course and the
staff there was very much co-operative they enrolled me for the 3 month’s
course. The classes were on top floor but building had a lift. To reach the
lift, few steps were there. Fortunately we found a person who was willing to
take me to the class. All the teachers there were very good and I obtained the
certificate after three months. Then I also did the webpage designing course.
The question most probably has born
with me and will pursue me through out my life. What is next? My family was
busy with their lives. My friends were available only in the evening for half
an hour or so. For chatting also I could not find many people during daytime. I
can not sleep for long hours. Watching T.V. compulsory was the only time pass.
Of course when cricket matches are there I am glued to T.V. Then I won’t miss a
single ball. Because of this passion of mine for cricket, my family members had
to suffer and ultimately I got a separate T.V. for myself.
Here I would like to share my joy and
experience to meet the Indian cricket team when Mr. Azharuddin was Indian
captain. Rahul Dravid was the rising star then. My father knew Mr. Prashant
Vaidya and arranged for the passes to attend a party to Indian cricket team at
Hotel Pride in Nagpur. We were in Pune. My mother, I and my sister travelled to
Nagpur by bus. At the party we first met Rahul Dravid. Rahul’s mother had
informed him about us. When we were at Bangalore he was a small boy but
remembered us. There were so many people gathered around to meet the cricket
players. It was very difficult for me to meet all the players but Rahul made a
point to bring each and everyone to greet me. All of them shook hands with me
and talked to me. It was the nicest experience of my life time. My sister took
everyone’s autograph. Sachin was busy discussing the strategy of next day’s
play with Anshuman Gaikwad but Rahul requested him to come and meet me. Oh! My
God! It was a great chance for other fans also to crowd around Sachin and ask
him for autograph. While talking to me he gave many his autographs including my sister. It was
the most memorable moment in my life. I thanked Rahul from bottom of my heart
for this memorable experience. Otherwise my dream would not have materialized,
Anil Kumble, Shreenath, Azharuddin, Sangeeta Bijlani and even umpires talked to
me.
As Rahul helped me to meet the cricket
team, his mother Pushpa aunty was the person who brought the turning point in
my later life. It happened like this.
My parents were always in search of
some work for me. My mother’s friend who had taken my tuition in Delhi had
shifted to Pune. One day she told my mother about the software (Win Braille)
which can convert the text in Braille. At that time mother was reading the book
“Wise and otherwise” written by Mrs. Sudha Murty. She thought that the book is
a good book to convert in Braille. A hidden purpose was to make me read the
book. I am basically is not very much into reading; so she wrote a letter to
Mrs. Murty asking her permission to convert the book in Braille. In no time we
received a greeting and permission to take the project.
Sitting for hours together I typed out
the book. Then search began for the Braille printer. My father learned about
the availability of the printer at Jagruti school for blind at Alandi. He went
all the way to Alandi taking the CD of my Braille file of the book “Wise and
otherwise.” We got copies of the book printed there. Now the question was what
next?
Fortunately my mother had a talk with
Pushpa aunty. She said “Send me the copy” I will meet Mrs. Murty and inform
her.” She did that and Mrs. Murty gave me her eight books to convert in
Braille. She sponsored all the books. She insisted that I should earn for my
efforts and I got my first earning in my life.
At that time my mother read news in
‘Sakal paper.’ The news was about conversion of a book in Braille by Mrs. Sule (Mr. Sharad Pawa r’s daughter)
had done the inauguration of the book and stated that there should be
conversion of more books in Braille. My mother wrote a letter to the editor of
the “Sakal paper” she wrote about Mrs. Murty’s book conversion. Within no time
the reporter of the daily contacted us and the news was given in the paper.
That was the beginning of media
coverage of my story. I won’t forget that day ever. I received so many phone
calls that day that I was sitting near the phone whole day. After that day
there was no turning back.
I received Shahu Modak Prathishtan’s
Award. This award was given by Mrs. Pratibhatai Modak in remembrance of her
late husband Shahu Modak. It is given to a handicapped person who works for
other disabled persons. I just can not forget the function. Mr. Prashant Damle,
gave an emotional speech. Mrs. Pratibhatai Modak felicitated my mother as well.
That was the most touching point. I could do all the things because of my
family’s support.
2007 was a memorable year for me. 25th
April 2007 I received the above mentioned award and in December 2007 Mrs. Sudha
Murty invited us for the function at Kolhapur. The function was organized to
celebrate 100 titles of her books. We went for the function. It was a surprise
for us she felicitated me and spoke about me for five minutes. I got a standing
ovation from the audience. I can not express the joy. It was a great moment in
my life.
Here I have to mention about my great
friends who considered me their friend and gave me the priority. They are Mr.
Anand Badve and Mrs. Meera Badve, of ‘Nivant Andh Muktalaya’ rehabilitation and
teaching centre for adult blind girls and boys. They teach the students and
help them to get the teaching material in Braille for undergraduate, (11th,
and 12th) graduate and postgraduate study in various categories. When we had to
prepare the books in a very short period for Mrs. Murty, we contacted “Poona
school of blind for girls” Kothrud. The principal Mrs. Pujari helped us but had
the problem of proper help for short time work so we went to Mrs. Badve for
printing of the Braille books and she helped us.
Since then I am her friend and both of
them consider my book conversion and printing as their priority. Hats off to
them.
The printed pages of the Braille books
were just kept together with the threads. Father did not like that idea and he
searched for a binder. Umesh printers in Kothrud accepted to do the binding
work. It’s a beautiful binding. All these books were sent to the blind school
in Karnataka as the list was given by Mrs. Murty.
After this English work I took the
books in Marathi and Hindi. Mrs. Jayashree Pendharkar from Nagpur visited us
and gave me her book in Hindi “Shishu aur mata ka Aahar.” I converted that book
in Braille and donated to different blind schools. Then she gave me one Marathi
book and sponsored it. The copies were donated to different village and city
blind schools in Maharashtra.
When the advertisement to apply for
President’s award came in 2010 my parents applied for the self employed
cerebral palsy category. To our great surprise I got the letter to come and
receive the award on 3rd December at Vigyan Bhavan New Delhi. All my
family members were thrilled. My sister came from Chennai. My aunt came from
Nagpur. We went from Pune. It was a family get together and a great enjoyable
moment for my 88 yr old grand mother. As if to meet her I got this award.
This award had lot of publicity in
Pune. In all newspapers and TV media I was praised. This publicity led to
another function. Mr. Sandeep Nulkar of “Bits” a firm working in translation to
many languages had written a book to guide youngsters to work in the field of
translation. He wanted to publish the book in a unique way. He put the
translator word in Google and he received an article written on me as a Braille
translator. Somehow he managed to
contact us and asked me to publish the book. It was a great honour for me. He
presented me few books. Dr. Salil Kulkarni’s book “Lapavalelya Kacha” was one
book amongst them.
We took his permission and converted
the book in Braille. A function was arranged to publish the book in ‘Balkalyan’
of Pune. The blind school boys and girls were present for the function. They
were real fans of Dr. Salil Kulkarni and knew all the songs by heart. Salil
encouraged them to sing the songs and one blind girl read out few pages from
his book in Braille. It was very much enjoyable function.
My facebook connection gave me a great
gift of music lover friends. The group is actively in touch with each other and
organizes gettogethers in different cities. When they had organized the
function in Pune. They came all the way to my house to meet me and took me to
the function.
At that time I did not have any full
time attendant; but they took the responsibility. The y literally carried me in
their car to the function, looked after my needs there and I enjoyed
thoroughly. I even sang a song. That was my first outing without my family
members.
One of my friends from this group came
to visit me and presented me with the books of Lata Mangeshkar’s Hindi movie
songs. I converted a book of these songs in Braille which was sponsored by the
person of that group. Every year now he is giving me my birthday presents either
in the shape of sponsoring the book or sometimes in the shape of websight.
My next book was sponsored by my
sister, Mr. Sandeep Nulkar and Amruta (my sister’s friend). The book was “The
Monk Who Sold His Ferrari.” The book was donated to different blind
associations. One of my cousin brother took the sponsorship of a book in
Marathi “Stotra Mantranche Vigyan” and my maternal uncle sponsored the book
“Rajyoga” of swami Vivekanand.
So far I have converted 18 books in
Braille. One of the book was of jokes in Marathi. I received a very good
feedback on that book from school in Anandvan. Dr. Baba Amte’s school for blind
students. They enjoyed the book. When I received the letter I felt really
touched. At least somebody could be benefitted by my work.
From above narration I think I am
quite clear about the fact I am facing. My near and dear ones are only
sponsoring my books.
I do not have a steady source of work
when I finish a book there is again the same question “What is next?” I think I
am born with that question only and will have to live with it.
