The Universe in MY PALM

Post 1538 of 1732
  • (L-R ) Shazia Fathima, Dipti Karnad, Special Educator, Sense Interantional India

(L-R ) Shazia Fathima, Dipti Karnad, Special Educator, Sense Interantional India
(L-R ) Shazia Fathima, Dipti Karnad, Special Educator, Sense Interantional India
The-Universetwo
The-Universethree
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(L-R) Sunil Gandhi, promoter, Sense International India, Sunil Sheth, Chairman, Sense International (UK), Nafeeza Pavri,head, idividual engagement, Sense International INDIA
The-Universefive
Akhil Paul, Director, Sense International India

She draws out an ‘M’ with her gestures using her fingers over her left eyebrow and gives me a name. Shazia Fathima at 19 years of age is deaf-blind but has a name for everyone she meets depending on what she understands of their personalities. When she walked up onstage with her tutor Dipti Karnad to addresses the Dubai audience at the Taj Hotel at the Sense International event and book launch, she moved the audience to tears. It was her first time onstage but she proved that she is the stuff heroes are made of. Manju Ramanan speaks to the girl who wants to be the world’s first deaf-blind astronaut! “I want to go to college – to an astronaut’s college – NASA!” she says

Shazia Fathima at 19 years of age is deaf-blind – due to the Congenital Rubella syndrome. She had her cataracts removed at birth and a heart operation in the first four years of her life. With low vision and profound hearing loss Shazia was misunderstood as a child since she couldn’t communicate what she felt. But early intervention by special educators and loving care and involvement from her family has blossomed her to not just be educated and independent but being a peer tutor to her friends and juniors as well.

We settle down to a chat with her and her tutor Dipti Karnad who translates my questions in sign language to Fathima who answers them. But first about the name.Since Fathima has a name for everyone she meets, I ask her what is the name she would give me. Fathima points to her left eye- brow and says that is how she identifies me.(Incidentally my left eye -brow is slightly higher than the right one).

Fathima’s mother Farzana Mujeeb had German Measles (Rubella) in the first trimester of pregnancy when the disability was identified. Dipti states, “Before joining the programme she had a lot of so called behavior issues. She would spin around, eye poke, flick her fingers in the typical way that children with deaf blindness do. She had a lot of tantrums and did not communicate meaningfully (rather people did not understand her communication) She had a lot of health issues so spent a lot of time in and out of hospital,” But the main issue here was that the child felt frustrated because she couldn’t convey what she felt and when that was figured out, things changed and how! The family approached the Clarke School for the Deaf in 2009 through Dr. Mohan Kameswaran of Madras ENT Research Foundation, where she had been taken for audiological assessment.

Once she joined the school, she began to learn quickly.Her first teacher was Dr J Vijayalakshmy who inculcated the habit of using hearing aids. Once the hearing aids were given and she began to hear some sounds around her, the so-called “behaviours” began to fade away. Very soon she was taught finger spelling and signs for survival words and then there was no looking back. In 2000, Fathima had a new teacher, Dipti who started working with her alongside Dr.Vijayalakshmy.With a bombardment of communication techniques like sign language and finger spelling, she transformed into a diligent girl from the one that was branded as having behavior problems. She soon realized that people understood what she wanted to say and she too knew how to convey her wants.

Her vocabulary grew and she found out that what she could not express in sign language, she could do by drawing. Dipti narrates an incident that left her speechless. She drew out her interpretation of the death of her grand-uncle beautifully expressed through stick figures when she was just five years old. The grand uncle was mentally unstable and the drawing showcased one lean figure on the floor and several figures bent on it.

With expression came confidence and then sky was the limit. Fathima found a good friend in Arihant who joined the Sadhana Unit a couple of months later.Since she developed good signing and finger spelling skills, she became a good peer tutor to her classmates especially for Kiran who had a problem imitating finger spellings and signs. Very soon her vocabulary both written and signed grew and she began to get interested in reading and writing, especially information about planets, outer space and mathematics. She began to show interest in SUDOKU.

Currently she is studying in Std. IX and will be doing her Std X of the National Institute of Open Schooling. Adept at handwork especially embroidery and jewellery making, she was selected to take part in the National Abilympics in the jewellery making competition since she won the first prize in the Southern Abilympics. She made presentations in the Plenary Sessions of the National Conference of Deaf blindness held in Delhi in 2011 and 2014 and this year she received a Certificate of Merit from a local Rotary Club.

She loves to read about the planets, rockets, journey in outer space and enjoys doing grammar exercises and passionate about needlework and fabric printing. She enjoys dressing up like all young adults of her age and ask her what is her favourite colour and she says it is blue. Blue like the sky she wants to soar into as an astronaut? “ Whenever we ask children where they want to go for a short trip in the city, she always wants to go to the planetarium. We are bored of those visits, she is not. Her father has bought her many books on the Universe, solar system and even in school during reading hours, she is hooked to the books on astronomy,” adds Dipti.

Her school Director Dr.Leelavathy Patrick, all the staff of the Sadhana Unit are very proud of her achievements. Her greatest achievement is her making presentations in the National Conference on Deaf blindness that too in the Plenary Sessions. She has addressed the year 3 students of the Indian Institute of Technology, Chennai. She is interested in fine arts and is the most sought after person when it comes to preparing handicrafts; especially fabric printed tee shirts for the exhibitions in which the Sadhana Unit participates. “ She loves quilling and when she is home, her favourite trip is to the craft shop to buy more material,” adds Dipti. A proud tutor Dipti is all praise for her little student “ For me it’s a mission accomplished and I feel proud that I have been able to use my training in Perkins School for the Blind to be her teacher”. She is joined by Mr Srinivasan who is working with her for the NIOS subjects. To her family Shazia Fathima has brought good luck and her father calls her his lucky charm. Shazia is a gift from Allah. She is a miracle child and we will not leave any leaf unturned for her success in life”, say her father Mujeebur Rahman and her mother Farzana Mujeeb.

Fathima’s example proves that intervention can create miracles. All individuals who are deaf blind experience extreme challenges and are ‘educationally isolated’. They require special and unique educational approaches to reach their full potential. Persons with deaf blindness face neglect and discrimination owing to their inability to communicate and relate to the world. They are thus denied even the basic human rights like education, medical care, amongst other needs that are taken for granted by most of us.

MIRACLES HAPPEN!
Paul Feeney, Chief Executive Officer Old Mutual Wealth and Trustee Sense International been actively involved with Sense International for the last 10 years. “As an asset manager I deal with very fortunate people all the time but most of us want to make a difference. There is a famous quote by Mark Twain that says ‘The two most important days in your life are the day you are born and the day you find out why.’ For me, it has been the day I chose the why. I learnt in the process that if you are serious and put the effort, you could create miracles in life. And yes, I would be delighted to employ a deaf-blind adult in my work-force”!

 

AWARENESS IS IMMINENT
Says Akhil Paul, Director, Sense International, India. “There is very little awareness about deaf blindness amongst the government, general public and other NGOs working in the area of disability. Due to this situation many deaf blind children and adults are left without support and even considered severely mentally retarded incorrectly. What most people do not know is that deaf blind children and adults can become active members of society if provided with the right care and support,”

 

SKY IS THE LIMIT!
Sunil Seth Director Sense International UK would like a chapter of Sense International in Dubai and will look out to reach to the deaf and blind people here. “My father was the first chair of the organization and I didn’t know till I was rummaging through his papers after he passed away. So when the trusteeship was offered to me I took it up. We have a good client base in Africa, London and Romania and we would branch out Sense International in those countries as well. I was really moved by the work and dedication out by the educators. They could easily earn four times the salaries they earn today if they pursued a corporate job but their noble choice makes them heroes.They inspire me and so do the children they work with. Most of the privileged lot complain of lifestyle related issues – all of it looks very small compared to what the kids and the educators are challenged with. In one of my offices I did employ a blind lawyer who came in everyday to work with a guide dog.”

 

THE IEP PLAN
Nafeeza Pavri, head, Individual Engagement, Sense International states that it is important to follow the Individualized Educational Plan (IEP), a unique strategy that recognizes and respects each child as having unique abilities and supports an educational plan that is developed around the needs and capacity of an individual child. The IEP is based on exhaustive initial screening and assessment by a multi disciplinary team consisting of an ophthalmologist,audiologist, psychologist,special educators, occupational/physiotherapist, mobility instructor and family members.

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