ZAMIR DHALE
ZAMIR DHALE
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BIOPIC
SUMMARY
This is the story of Zamir Dhale, the founder of “ ”, the first association of its kind, for the Deaf-Blind in India, who is also a deafblind, himself.
Early Childhood (Age 1-10)
Kudachi is a small town in Belagavi district, in the state of Karnataka, India. It is an average small town, with its historical Dargas and sugarcane farms. This little village was lined with huts with their thatched roofs and mud walls. During the day one could hear the bleating sounds of goats and mooing of the cows. At night it looked like a thousand lightning bugs shimmering in the dark, with the many lanterns and oil lamps lit in those small huts. Before one starts to think that it is almost whimsical, in reality, much of the town lacked basic electricity. <Zamir’s father> owned a small farm here and <mother’s name>, a homemaker. They led a normal life, as normal as can be for a lower middle class couple in a small Indian town. Zamir was born to this couple on May 30, 1975. <Father> was upset that the baby was born deaf and wanted to give him up. Their small little town didn’t offer much support needed to care for a deaf child. So they moved to Pune where Zamir’s maternal grandparents lived.
Zamir’s maternal grandparents lived in Pune, India. His grandfather was retired from the Indian Army, grandmother taught tailoring to neighborhood girls. Zamir’s maternal grandparents took him under their care and nurtured baby Zamir. His childhood memories are filled with a mix of joyful moments of playing with his friends and horrifying experiences of mistreatment. Zamir fondly remembers the games he played with neighboring boys; cricket, badminton, hide ‘n seek and hours upon hours of dress-up pretend play. Zamir’s family were devout muslims. When Zamir was just 4 years old, his grandmother enrolled him in a religious school. Since he was deaf, he couldn’t understand much of what was taught but he would copy the Arabic writings from other kids in the class. He remembers the time when he got in trouble for playing with his grandfather’s rifle and for playing with Holi colors. Everytime, he got in trouble, his grandmother would come to his rescue and console him.
Zamir also liked to break open the toys to see how they worked. He would always constantly ask for new toys which his grandfather couldn’t afford. Eventually, he learned to steal money from other members of the household. This one time, he stole money from his uncle and hid the money under the pillow. Zamir’s cousin found out about this and complained to their grandfather. When inquired, Zamir refused to have done any wrongdoing but eventually his theft came to light. Needless to say that he got in trouble with his grandfather again. This made him imitate the movie villains and bandits, as he wanted to go un-caught like them. Eventually, imitating famous movie characters became Zamir & his friend’s favourite pastime. They would pretend to be a group of bandits and Zamir would pretend to be their leader. They had loads of fun playing like that.
On the other hand, school life was not so fun for Zamir. By the time he was in grade3, his eyesight started to deteriorate. He would go very close to the black board to try to read what is written. Many of his teachers did not like this. Slowly, he started falling behind in studies as he could not read well. He had to hold the book very close to his face in order to be able to read, but his teachers always insisted that he hold his book a little away from his face. Many of his teachers used to complain about him all the time, he couldn’t even write in a straight line. Somehow, with his grandfather’s help, Zamir learned to write in a straight line. Other children in school were surprised to see this progress. Other kids in school used to make fun of Zamir because of his disabilities.
When this started worsening, one of his teachers recommended that Zamir’s parents take him to get his vision checked.
The doctor prescribed a pair of glasses that seemed to help him a little bit but still his sight started to detoriorate further. The glasses irritated him. Zamir would sneak out of the house without his glasses and ride a bike with his friends or fly kites. Situation at school started becoming worse. The teachers were not interested in teaching kids let alone teach a deaf child with a bad eye sight. To top all these off, once he held a fireworks near a stove which burst in his face. By this time, Zamir was going to a school for deaf children. This school was recommended by one of his mother’s friends. Especially one teacher and a maid who were really mean & cruel. They would beat up children for every little thing like say for talking on the bus in sign language. Kids were afraid of them. Zamir and his friends would find every little excuse to skip school. But, Zamir’s grandfather would insist that he not skip school.
By now, School life was miserable for 8 year old Zamir, but life outside school wasn't that great either. Other kids would not play with him because of his disabilities. Zamir developed interest in books. He liked looking through picture books. One day while on the terrace of the house he found a magazine. At that time he did not know it was a porn magazine, but his aunt caught him looking through the pictures. She confiscated the magazine from him.
By the time Zamir was 9, he developed an eye infection which left both of his eyes swollen. He was taken to the town hospital called, The Sasoon hospital. His aunt cared for him for much of his time in the hospital. Zamir liked his aunt. She was very nice to him and cared for him. His aunt and another kind nurse would play with him. After about 3 or 4 days of treatment the eyes started getting better and he was sent home. But, his infection relapsed and he had to get admitted in the hospital a few more times. Zamir wished his mother would stay by his bedside. Unfortunately, his mother had to take care of things at home and only his grandmother could stay with him in the hospital. He remembers his mother and grandmother carrying him to his hospital bed. Zamir’s eyesight was getting worse and by now he could barely see. He always clung to his parents and would respond mostly to the touch. His family feared that he may lose his vision permanently. So, they took him to see another doctor at a private hospital, where he had to undergo an emergency eye surgery. The life after the surgery was more painful for Zamir. He did not like the bandages around his eyes, nor did he like to stay in the hospital. His frustrations made him act erratic. He would scream and throw pillows at other patients at the hospital.
Little zamir would throw fists at his mother and the nurse too. The senior doctor came to see him once and she calmed him down. She would give him chocolates and use tactile communication. She was able to get through to him which made Zamir stop hitting others. Once again, zamir could communicate with the people around him. That calmed him down greatly.
In Spite of the Doctor’s good efforts, Zamir’s sight didn’t improve much. Even under bright lights, his vision was blurry. His mother took him back to school but the school for the deaf was not equipped to teach someone who was both deaf and partially blind. So his parents kept him home.
Zamir was a curious little boy and by observing his mother work on the sewing machine he wanted to give that a shot. He would try to thread the needle using a wire. Seeing this made his mother very happy and she felt he could learn something. But she didn’t know where to find such an institution that would train him.
As luck might have it, a friend of Zamir’s grandfather showed them an article in the local newspaper that would give them hope. It was about HKIDB School, the one for deaf-blind in Mumbai, India. Zamir’s grandfather enrolled him in that school. That was a turning point in his life.
Zamir remembers how he felt when he arrived at the school with his grandfather and brother Akthar. He was so scared and wouldn’t talk to anyone there. Slowly, he warmed up to others and became quite independent. The principal, Beroz Vacha, was very nice and kind. There, he started learning Braille. Mrs. Vacha was well trained in teaching the deaf-blind.
Mrs. Vacha and another teacher started him off with a Perkins Brailler machine and slowly used tactile methods to explain pictures. They used different techniques like craft papers, tracing letters with a thread. This was a new experience for Zamir and it opened up the whole world around him. Now, he could touch, feel and understand the things around him. He could learn about nature, geography and anything else he wanted to. Zamir wondered if he could meet God and ask about how he created this world. His teacher would chuckle and tell that he needs to pray inorder to meet God.
One fine day in 1990, another boy enrolled in the same class. He was Aney Mathew. Aney was from Kerala and was about the same age as Zamir. Aney’s brother was blind, so he had access to a lot of the material that even he could use. They both stayed together in the same hostel. Zamir was very happy to have a new companion. Aney was very intelligent. He knew a lot of stuff about different things. They both would travel from Borivali hostel to the school Byculla together, sat next to each other in class and studied together. Zamir would be looking forward to conversing with Aney. They hung out with other deaf-low vision adults like Sanju. All three of them spent their Sundays together, roaming the streets of Mumbai. Sanju used to amuse Aney and Zamir with all the stories from his village.
In class, Zamir would interpret what the teacher was saying to Aney. Sometimes, Zamir would daydream in class and suddenly stop interpreting for Aney, then the teacher would come and gently tap on his hand to bring his attention back.
As much as Aney and Zamir enjoyed each other’s company, they would squabble about one another, especially to get more attention from their teachers. Sitting in a classroom and learning about math, geography and the sort, started to seem boring now. Zamir wanted to roam the world. He got reprimanded for not paying attention in class or for inappropriate behavior with girls. He would be okay getting in trouble with other teachers, but not Mrs. Beroz. She was the only one he would listen to.
Zamir remembers the time when the kids would go to the local YMCA to learn swimming. He was always afraid of water and would refuse to go any deeper than waist high water. He would always be holding on to the railings on the side. One day one of the instructors, Ms. Sangeeta Gala compelled him to go farther and she forced him to the pool and taught to swim. That made him comfortable with water and swimming. In the pool, he was always comfortable around other deaf children but not the deafblind. One day at the pool, he almost drowned and couldn’t find his way onto the pool deck. He hung on to another swimmer who passed his way but then both of them lost control and were struggling to get out. Finally, the lifeguard had to rescue them. In the long run, Zamir overcame his fear of getting in deepside of the pool.
That summer when Zamir went home and when he returned to school, another new student Pradeep had joined. Pradeep’s father was in the military and later he was a security guard for a bank. Pradeep had five sisters and he had lost his eye sight at the age of 12. Zamir, Pradeep and Anay started hanging out together a lot. Somehow Pradeep preferred Zamir’s company to that of Aney’s. That was mainly because Zamir was very expressive and they both could easily connect with each other. This friendship stuck with them for life.
Zamir, Aney, Pradeep, Mary, Sanju, Saurav and Akhthar used to spend time together in the hostel. They used to sit together for dinner and share their stories.
They also used to do silly things and play pranks, like one time Saurav and Pradeep went and hid in the kitchen. They discovered the electric box and wires. Saurav was good with electrical stuff, later on he became an electrician by profession.
Zamir was always good with building things. He would build with Legos, clay, cardboard and different mediums. He would make clay models of flowers, fish and a whole array of things. His teachers were always impressed with his building skills.
Later in 1992, a very smart young teacher Shyama and her American friend Emily came to teach at the school. Kids could relate to Ms.Shyama so well as she was also deafblind. She would understand their struggles and apprehensions. Ms.Shyama and Ms.Emily taught them to read Braille effectively. They also taught them other things like science & geography. Zamir felt comfortable learning from Ms.Shyama. It took another deafblind adult to understand the feelings and needs of a deafblind child.
Along with Braille and other subjects, kids also learnt basic life skills so that they can be independent and take care of themselves. They were taught the body hygiene, cleaning up after themselves, doing dishes, personal appearance etc.,
By the time, these kids were in 7th grade, Mrs.Beroz included sex education to the curriculum. Two teachers, Ms.Sheela and Ms.Zareen would teach these kids about anatomy of male and female, using tactile books. Some kids got into trouble with inappropriate behavior. One of them was Dolly. After multiple warnings, she got expelled from school. Both Ms.Zareen & Mrs.Beroz were good teachers but they were very strict with the kids. They would not tolerate any, kind of misbehavior. This kept most kids inline. At the same time, they wouldn’t tolerate other adults abusing or hitting children. Once a warden Ms.Saraswathi was fired for hitting kids.
Every morning before school, Mrs.Beroz would teach Zamir how to speak. She used the Tadoma method of teaching. He had to wear hearing aids, even if he disliked them. Zamir remembers refusing to wear them and trying to get away from attending these sessions. Thinking back, now Zamir realizes how important it was to learn to speak. Mrz.Beroz would also make it a point to teach kids music. She would teach them how to play keyboard, flute etc. They also celebrated different religious and cultural festivals together. This brought a sense of belonging in children and they were happy to be together as one big family. Zamir remembers this one time when he took part in a school play during Christmas celebration, where his role was to play the Biblical Zachariah. Learning to dance was a bit hard for Zamir. He felt very shy to dance with girls. Eventually, he got over that and learned to dance to some extent.
Zamir remembers this other teacher Ms.Namita whom he liked very much.Pradeep & Zamir wanted to learn how to ride a bicycle. Ms.Namita said it would be hard for them as one has to be able to see where they are going in order to ride a bike. But, then she would give them a ride on her bicycle. Zamir enjoyed riding around the playground with her. One day, they met a group of hearing kids at the playground. They had not met deafblind people before and were really interested to learn more. They were enthusiastic about learning ASL from Zamir & friends. That experience felt good for the deafblind kids.
At the hostel all the kids had chores to do. While Zamir & Pradeep helped with cutting vegetables and cooking, Akhthar would fetch water. Slowly, they learned to bake. They would bake cakes, biscuits, wafers and sell it at school. This was a nice little profitable venture for the group.
A new principal, Mrs.Reena Bhandari joined the school. Mrs.Bhandari’s daughter, Divya Bhandari was hearing impaired and she also was a student at the same school. Mrs.Bhandari introduced vocational training to the students. Pradeep loved making candles and Zamir liked making jewelry.
Zamir had a very good relationship with Mrs.Beroz.
She used to call him ‘sunshine’. Zamir was bold and outspoken. He was not afraid to speak up whether it was about a class he didn’t like or an activity he didn’t wish to participate in. Mrs.Beroz would gently but firmly correct him. She would hear him out and give appropriate advice. She would share with him about her life experiences too. That made Zamir feel very much important. She was a kind person and tried to help all the students. Once Zamir expressed his desire to visit America. She arranged for funds to send him to America. That was extremely nice of her.
Zamir was always going to Mrs. Bersoz, with all his complaints about teachers or warden or other students. It was so much that once Mrs.Beroz hid from him when he went to the office, looking for her. He went back a second time, but again she was not there. One of the other staff had tipped her off that Zamir was looking for her. This time though when Zamir came into Mrs.Beroz’s office, he knew she was somewhere nearby. He could feel her presence, smell her perfume in the air. Finally, Zamir approached Mrs.Beroz and asked why she was avoiding him, to which she apologized and said she only wanted to taunt him a bit.
By the time Zamir was around 15 years old, he wanted to have a girlfriend. Everyday after school, he would walk behind a group of girls in the hopes that he would attract someone’s attention. He did become friends with one of the girls in that group, but that relationship never went farther.
By the age of 18, he learnt to walk using white-red canek and learned to spell in English. Now, he could go to a tea stall and order tea all by himself. He would spell TEA on his palms so the other pedestrians on the road could help him get to the tea stall. After 10th grade, he passed his board exams and completed schooling. After that, he opted to go to a vocational school, so he can become financially independent too.
He enrolled in NAB Training Center in Mumbai, along with Pradeep and Akthar. They learned various skills like book binding, electrical work, cooking, wood work and tailoring. The one thing he couldn’t quite understand was computers. The class instruction was in spoken English which was hard for Zamir to follow. Zamir and his friends had to use an interpreter but they were not following it well. Then, he went to Ahmedabad to attend more vocational classes. Here, they had tactile diagrams to help deafblind understand GUI. They taught how to operate a computer and always a non-deaf person was beside them to guide.
After his training, Zamir returned to Mumbai. He wanted to start computer classes for the deafblind, so he approached Mrs.Beroz. At first Mrs.Beroz was hesitant but later she agreed. Other people were not so encouraging. There was much scepticism, rightfully so. Blind people could use a software like Jaws that would teach the blind via oral instructions, but how could one teach the deafblind. That means an interpreter should be present at all times to help a deafblind person operate a computer. Nevertheless, they decided to try and see how it goes. In 2000, for the first time in India, Zamir & Mrs, Beroz started computer classes for the deafblind. They used a refreshable braille display device. But, these were very expensive to come by. As and when the technology evolved these became more affordable.
Zamir joined as an assistant teacher at HKI. He taught Computers, Communication skills, Mobility Skills and Tactile communication skills for hearing interpreters. 2002 was a very special year. They launched RCI Diploma Course in ComputerScience, for the deafblind. Zamir also completed a six month IT course from another institution. Inspired by Zamir, Pradeep got his diploma and now he works at the IT department of Dell Computers. Zamir was invited to Black Film Festival where he met Rani Amitabh & Sanjay Leela Bhansali who are very prominent in the Bollywood film industry.
In 2006, Zamir joined as an Advocacy Officer at Sense International India.
During his tenure, he learned a lot about different laws, improved his English, and learned to write essays in English. He met different people which helped him grow as a person and later become an advocate for the deafblind in the country. This time, his mentor was Ms.Sumitra Mitra. She was the Deputy Director of the organization and was a very kind & down to earth person. She taught him to write essays, make presentations. She learned the tactile signs so she can communicate with and interpret for him at various venues. She encouraged him to get familiar with different Government acts and laws related to disabilities.
Ms. Sumitra had a beautiful family. When they met Zamir for the first time, they were so astonished to see how independent Zamir was in spite of his disabilities. They asked how they could communicate with him and soon started talking to him by writing on his palm. Ms.Sumitra showed him around by helping Zamir touch & feel different things in the house. Her daughter made him tea. Her husband even introduced other extended family members to Zamir.
As it happens to many young adults in India, few different people approached Zamir’s parents asking for his hand in marriage. One was a nurse and the other was a neighbor. Both times, Zamir’s mother had to say no as they thought Zamir had a girlfriend from school. But, they were unsure how a deafblind person could lead a “normal” life. Later, in 2007, Zamir married Nasrin who was the younger sister of his mom’s friend. During that time, Zamir was working in New Delhi. He flew from New Delhi to Pune and got engaged to Nasrin. Soon after that, they were married. Even the Mullah was surprised that a hearing person was marrying a deafblind. They both started off their married life in New Delhi. But, Nasrin didn’t like Delhi that much, she wanted to move back to Pune. She insisted that he find a job in Pune so they can move back there. Zamir couldn’t find any job in Pune. After contemplating the idea of starting their own NGO together, Zamir decided that it is better for him to continue with his job in Delhi. This often caused altercations between husband and wife. Dissatisfied, Nasrin moved back to Pune and lived with her in-laws for sometime. Needless to say that Zamir’s parents were unhappy with this arrangement and they insisted that Nasrin go back to Delhi. This further upset Nasrin, who then moved in with her sister. This went on for sometime and after a few days, Zamir came down to Pune to meet Nasrin. Long story short, finally Nasrin accompanied her husband back to Delhi.
Nevertheless, she was still unhappy with the idea of having to live in New Delhi. Nasrin’s sister continuously interfered in their married life. This caused quite a bit of tension between husband and wife. This tension in their personal life spilled over to their social life as well. Nasrin did not have a good relationship with her neighbors in Delhi. One day, amidst their argument, Zamir slapped Nasrin. Upset and rightfully so, she complained about Zamir to Mrs. Sumitra, who later advised Zamir to not repeat that kind of behavior.
Nasrin thought that having a baby would make their relationship better. Zamir was very much worried if he could financially support a baby. Soon after that, they had a baby girl Zoya. He was happy and proud to be a father.
Things started off great for Zamir, at Sense International India but didn’t stay that way. Soon he found himself unhappy working with hearing people. He felt a lack of empathy and understanding, which resulted in poor communication. People would try to explain things to Zamir using ASL but they were not alway thorough with their translation. Zamir felt that he never got the complete picture of the task at hand. When he would make a mistake, they were quick to blame him rather than explain things properly. This used to frustrate Zamir quite a bit. He longed to work with other disabled people, for they would understand his perspective. Not all the hearing people lacked empathy.
Zamir felt his everyday interactions with regular hard working people was much more empowering than his experience working in the office. May it be the Dhabawala who used to tell jokes to Zamir by writing on his palms or the rickshaw wala who would understand Zamir’s gestures and figure out where to drop him. Sometimes, it was hard to communicate but eventually people would understand.
Mrs.Sumitra resigned from her position at SII and a new person replaced her. Zamir and his colleague Sachin were transferred to Ahmedabad, Gujarat. It was a different kind of experience for Zamir. His commute was harder as he lived very far from his workplace & almost everyday he would have difficulties hiring a ride. He would leave home around 8am to reach the Auto Rickshaw stand, hoping some rikshawala would approach him. Some people would ignore him and others would try to talk to him and when he couldn’t reply they would just leave. One day a passerby came to his help. When Zamir tried to hold his hand so he could write on the person’s palm, the gentleman pulled his arm back. Then, Zamir slowly extended his arm and gestured to the person to write on his palm. The person wrote something in Gujarati, Zamir said that he understands only English. Then, the person wrote words in English and eventually helped Zamir get a ride in the autorickshaw. Once he got off the rickshaw he would use his cane to find his way to the office. Either due to the traffic or due to missing his cues that help him find his way or due to crowded busy streets, he would get late to the office. He would be pulled aside and marked tardy. Zamir felt like he was being wrongfully targeted because when others were late nobody reprimanded them.
Between 2003-2005, Zamir & his buddy from school Pradeep, worked with Sangeetha Gala filming the movie ‘Black’. He worked with Rani Mukherjee, Amitabh Bachchan & Ranbir Kapoor on the set. He would teach them tactile communication and mobility. He enjoyed working on the movie set. Zamir’s dream was to become the director of SII. Everytime he would express that interest to his director Akhil, he was turned down. There were different teams in SII taking care of different responsibilities like fundraising, communication, PR etc., but most of the staff was not disabled. Zamir was one of the few dsabled staff and the only deafblind employee.
In 2012, Zamir got an opportunity to speak at the UN Human Rights Council’s General Assembly, in Geneva. He was given 10 minutes to present while others received only 5 minutes. Much to the astonishment of the audience, he used the Braille display unit to read from his computer while giving his speech in Sign Language and used an interpreter to give the voice over.
Many other deafblind people including Akthar and Pradeep had approached Zamir to help them find employment. The thought of starting his own Association that would help other disabled people, always crossed his mind. He just did not know how he would make it happen. SII would not help him as they would see him as a competition. A few times, Zamir helped SII make fundraising videos. But, the beneficiaries were not the deafblind people. Zamir did not like this and he finally resigned from SII to start his own organization for the deafblind.
Zamir with the help of one of his acquaintances Sadik, completed the legal paperwork necessary to start a charitable organization. They filed their papers with the Charitable Commissioner’s office. The PA at the Commissioner’s office was surprised to see how organized and prepared Zamir was with all his paperwork and presentations. He along with Sandeep Bhave helped with the registration process. By 2015 October, SEDB was born. The board contained just one hearing person and fourteen hearing impaired people with Zamir as the chairman. This was the first of its kind in India, an organization for the empowerment of the deafblind.
In 2018, Zamir joined SII again at the request of Akhil. The working conditions had not improved much.
Zamir & his interpreter Sachin were sent to Spain, to attend the WFDB conference. At the end of the conference was a party in honour of Hellen Keller. Zamir got drunk at the party and missed his bus to the airport the next day. Sachin had taken some compromising videos of Zamir and put the blame on Zamir for missing the flight. This upset Zamir. After the incident, he was transferred back to Delhi. He moved back to New Delhi. He remembers that he took the Rajdhani Express from Ahmedabad to Delhi. He had eight bags with him and travelled alone. One of his friends, Shyambabu, had come to the train station to pick him up. His heart was not in his work anymore. SEDB was always on his mind and this did not go unnoticed. He was eventually let go from SII stating the reason as lack of funding. But, Zamir understood the real reason. He thanked them for the opportunity and requested them not to interfere with SEDB anymore.
Now Zamir, put all his focus on growing SEDB. He built ties with other organizations such as Enable India & NISH. With much hard work and dedication, he was able to get more deafblind people join his organization. Once again in 2019 Zamir received an invitation to the UN in Geneva. This was a proud moment for not just Zamir but to all the deafblind people around the world. They can be anything they want to be, disabilities or not.