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“Singing songs makes me happy. I spend time watching Malayalam TV serials”

Islanders often depend on the mainland for many of their daily needs. When the need become a medical one, serious concerns can arise. This is the case with Mubeera Muneer (18) from the island of Kavaratti in Lakshadweep.
Mubeera is the eldest child of Badarul Muneer Kattikulam (49), a fisherman, and his wife Ramla Beegum (38). A fisherman’s life and earnings are precarious; everything depends on the weather, and he is practically in a lockdown during the monsoon season. But Badarul, the sole earning member of his family, has been providing for them and educating his children: Mubeera dropped out in fifth standard (for reasons that will shortly become evident), her younger sister Muneera Beegum (14) has passed eighth standard and brother Mohammed Kasim (9) is in fourth standard. They live in a small house that Ramla owns.
Ramla told us in Malayalam that when Mubeera was a newborn there was “a lump on her spine which had ruptured slightly with some liquid oozing”. It required surgery, for which the island had no facilities, and so they had to go on a ship to Kochi. “It took us almost a week to make arrangements for the money we needed,” Ramla recalls. They did not know that this was the first of many trips they would have to make to Kochi, usually with borrowed money.
The surgery was done at the Medical Trust Hospital which Badarul was familiar with since he had taken his parents there in the past. But the couple discovered that the lump was the least of their problems. The doctor hinted that Mubeera would face developmental and locomotive disabilities in future. We have found that sometimes doctors fail to explain medical issues to those with limited formal education, particularly when it is a disability that is difficult to understand without some scientific knowledge. Mubeera’s disability certificate states that she has Cerebral Palsy but neither parent mentioned CP in their conversation with the EGS interviewer. They just said she had received “treatment” during their multiple trips to Kochi when she was a toddler, and that as a child, she could neither walk without support nor take care of her primary needs on her own.
The couple took Mubeera to an ayurvedic doctor in the neighbouring island of Kadmat and with regular treatment she showed improvement in her gait. But then the doctor moved to Kerala and they could no longer afford to make the journey. Mubeera started attending school; Badarul would drop her there in his vehicle. “After fifth standard it became hard for my teachers to handle my issues,” Mubeera told us briefly. But Ramla explained further. Because of her difficulty in going to the toilet she used to wear a diaper. As she grew older her classmates found out that she continued to wear a diaper, and started mocking her. “It became really painful for her,” said Ramla, “so she refused to go to school when she reached the age of 10.”
Knowing the importance of making Mubeera independent, Ramla trained her to take care of her own hygiene needs – how to change her diaper, take a bath and dress herself. Later she started going to a single-teacher school with just a few children, and there she was happy drawing pictures and singing. “We requested the sir to teach her [textbook] lessons because if she is educated she can get a government job as a disabled person,” said Ramla. But he wasn’t able to comply.
Around six months ago Mubeera had a health setback. After she suffered an acute stomach ache the local hospital, suspecting she had a kidney stone, started treating her but her condition worsened and she had to be evacuated by flight to the general hospital in Kochi. It turned out to be a severe urinary infection. “She was fitted with a urine bag and pipe,” said Ramla. “We get it changed every two to three weeks at the local hospital. She has to wear it for another three months, after which she is looking forward to going back to her school.”
Recently “some people” (the couple could give us no names) visited them and gifted Mubeera a remote-controlled electric tricycle so she can move out of the house on her own. “The only problem is that it cannot go over loose sand,” said Mubeera. “It gets stuck and I have to ask people for help.” The island, of course, is full of sandy soil! Badarul says he would have preferred a disability scooter for her.
Mubeera told us she spends time watching Malayalam TV serials on the Asianet channel. Her favourite food is dosa. “I love singing songs, that’s what makes me happy the most,” she said.


Vicky Roy