XTRASPECIAL
Pooja, Sunita and Priyanka Mali
Visual impairment is one big challenge that creates hurdles in the path of life, especially if it affects a person gradually or if it is hereditary. The Mali family from Curtorim has three women who are visually impaired – two of them 100 per cent and the third more than 90 per cent. It is an inherited retinal disease (Retinitis pigmentosa or RP) that causes severe vision loss or can lead even to blindness.
Sunita Malhari Mali, 54, is suffering from RP and had lost complete vision 25 years ago. Her elder daughter Pooja, 34, has 90 % vision loss while the second daughter Priyanka, 30, has lost total vision two years ago. Both the sisters began to gradually see less when they were in class V but due to social stigma they never revealed to the society or the school that they are losing their sight.
“It was our mistake to hide that we cannot see. It hampered our studies and the challenges to be at par with other students were difficult to cross. As kids, we did not realise that we have to tell others that we cannot see properly, and ask their help. Back in those days, there was not much awareness about special schools, and our family did not have the resources too, to equip us with special educators or provide best medical attention. In fact, doctors told our parents that there is no cure for this disease. It is hereditary in nature, and can pass on to the next generation,” explains Pooja who works at an NGO Saksham.
Saksham has been working in Goa for the past 14 years, organising conventions for the disabled, producing literature in Braille, blood donation camps, free squint operations (straightening of the defect in eyes) and providing glasses after eye checkups.
“Jaywant Dhond who heads the Goa branch of Saksham and the entire team has been very helpful. I am confident to learn many things here that would help me to surmount future hurdles, if and when I lose my complete vision,” says Pooja, a commerce graduate with Marketing.
Pooja had taken vocational computer techniques in 12th and graduated in commerce after which she worked at Shriram City Finance counter at Goa Rajee as sales executive for four years. Priyanka completed 12th standard with tailoring and used to earn her living stitching garments on sewing machine, but after she lost vision two years ago, she had to stop tailoring.
But the sisters and their parents have not given up. The father, Malhar Mali who drives a vehicle has stopped working sometime back after developing a heart problem. His 28-year-old son Ganesh is shouldering the responsibility of running the household. Thankfully, Ganesh has no issues of vision. However, as the disease gets passed on to the females, Pooja is worried for her two-year-old daughter, and takes her for regular eye checkups. So far there is no such detection, but the daughter had heart issues at birth, and was in a critical condition for several weeks.
“She had two holes in her heart at birth, and the entire GMC team, including the doctors, nurses and helpers, extended their support in dealing with the issue, and we are thankful to them all. Due to the heart issue, she is slow in covering developmental milestones, and under observation at the Paediatric Neuro Rehab Centre (PNRC) at GMC under Dr Aparna Wadkar,” shares Pooja.
It was Dr Aparna who guided the Mali sisters to National Association of the Blind (NAB) Goa and Mahadev Sawant, Sudesh Gaude. Both sisters went to NAB. Learning life skills, computer and mobile Apps, travelling alone, reading Braille instilled confidence in them. Life took a U-turn after being introduced to Prakash Kamat and Jaywant Dhond.
Pooja could answer her banking exam using a writer. She didn’t know this earlier that she was entitled to get a writer facility. NAB offered Scuba diving experience to Priyanka. She was thrilled as a visually impaired person she could get an underwater experience.
The sisters are vocal about their issues now but it took them many years to accept that they have eyesight issues and that they have to face society, and not stay put at home. “Do not hide your disability. As soon as you are aware of your disability, accept it and let the world know. It is expected that the society should accept the PwDs and not hurt or de-motivate them, but all are not aware of the gravity of these issues. Our mother has been running a flour mill from home since 2005, and as she cannot see, people sometimes cheat her with less money or more weight. This will not happen if the society is aware. Saksham is spreading awareness. I will also contribute my share to the movement,” concludes Pooja who was feted on Sunday, January 5 at the Popular High School on World Braille Day. She enjoyed her first public speech overcoming her stage fright and was interactive with the audience. Priyanka wishes to join open school, complete her education and be in the mainstream of society.
