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An MNC executive who started his own firm after being fired from “innumerable jobs”, a man who got a scholarship from the Defence Research and Development Organisation (DRDO) now teaching in slums, and a Class VI student fighting to outperform peers who ridicule her — epilepsy patients in India are engaged in an uphill battle against negative perceptions.
While patients say they are fighting back, with doctors and experts chipping in, there appears to be no response from the government, which is sitting on a draft proposal for a national programme on epilepsy that was submitted to the erstwhile Planning Commission five years ago by a committee formed by the Union health ministry.
Epilepsy, which is the theme for this year’s World Brain Day on July 22, is mainly caused when newborns do not get enough oxygen immediately after birth.
Seizures can also result from early childhood infections — like meningitis, encephalitis and cysticercosis — and head injuries.
Ankur Kamra (32), an MNC executive, has lost count of the number of jobs he was forced to change in Delhi and Mumbai before he finally started his own travel and tourism company.
“I was tired of being fired for a problem I could not control. I have seen compassion among employers for the blind and people with other physical limitations, but if you are a patient with epilepsy, no one wants to hire you,” Kamra told The Indian Express.
A patient of epilepsy for 23 years after a head trauma from an accident, Kamra said that since his school days, fighting prejudices has often been far worse than epilepsy itself.
“I can live with having fits because after a few seconds or minutes, I am normal. But how do you deal with, say, school teachers at a prominent public school asking a 12-year-old to wait in the washroom till school hours are over because he wet himself during a seizure?” he said, adding that he was forced to leave his school hostel after a few seizures.
With employers, he said the prejudices they held against him would always be turned into performance issues or “things far worse”. In one of his jobs which lasted a couple of months, Kamra recalled being made to sit on the terrace for 10-15 days with another employee, who too had epilepsy, at a reputed MNC firm.
“In another case during a seizure in office, the human resources personnel turned it into a case of sexual harassment because apparently I fell on a female colleague. She never complained, but they turned it into a sexual harassment case. I kept asking them if they knew what epilepsy meant, but it was a no go,” Kamra said.
He said he had woken up after seizures on the road with policemen asking him if he was drunk. “I carry an identity card in my wallet which says I am an epilepsy patient, but people either think I am a freak or a drunk or they just do not understand what it means,” Kamra said.
Responsibilities taken away
A 46-year-old MSc Computer Science graduate who won a scholarship from the DRDO for his studies now teaches Class I students in slums after trying to teach in public schools for close to 20 years.
“More than the illness, society forces you to withdraw into a shell and live a life of disability. I have tried for 20 years to be treated normally. But from teaching Class XII students, I was forced to teach Class VI students and then eventually Class I students because I had a seizure during class where I wet myself. I was a class teacher… those responsibilities were taken away, I was forced to resign or just go to school and come back,” he said.
After he graduated with the DRDO scholarship in 1991 from Allahabad University, he said no company hired him. “I took to teaching… In those days, computer science graduates got high-paying jobs, but not me,” he said.
He tried working for an e-commerce website but, after a seizure, he was asked to work from home. After a few days, assignments stopped coming. “They never throw you out, they just take away your responsibilities bit by bit till you are left with nothing. After I quit the job, I was sitting at home for four years, then I decided to teach slum children for a company. But even they are only willing to let me teach Class I students, not higher classes, because again I had a fit,” he said.
Project still on paper
Five years after a draft proposal on a national programme for epilepsy was submitted to the erstwhile Planning Commission by a committee formed by the Union health ministry, the project remains on paper. Dr Manjari Tripathi, professor of neurology at the All India Institute of Medical Sciences (AIIMS), who was part of the committee of neurologists, said it was high time such a project was started. “After headaches, epilepsy is the second-most common neurological ailment in India. One in every 100 children have it, but look at the level of prejudice. A headache puts a person out for three-four hours, a seizure only lasts a few minutes at best,” she said.
Adosh Datta, secretary of Ekatwam, an organisation working for epilepsy patients, said, “Epilepsy drugs cost barely Rs 500-600 a month and the costlier ones can stretch it to Rs 2,000-3,000. Despite this, the treatment gap remains 50 per cent in urban areas and 70-80 per cent in rural areas.”
Parents of a Class VI student were forced to change their daughter’s school four years ago after she had her first seizure in school. The now 11-year-old is still wary of cousins and neighbours, who make fun of her. “I was seven when I had the seizure, and now I am used to the looks and the whispers. My cousins laughed, my grandmother told me to go to a godman. Now, if people whisper, I tell them I am an epilepsy patient and show them the medicines I carry,” she said.
In her new school, the girl managed to get one mark over the top score in a mathematics paper. “She got full marks and an extra was given for her handwriting,” her mother said. Her mother said she now lets her child “do everything on her own”. When she went to buy vegetables on her bicycle last week, she had a seizure and hurt herself. When she woke up and found people staring, she got up and fought with them for not gathering the vegetables. “At least, she is becoming independent. Social perceptions are hard to change and I know she has to be prepared for these battles,” her mother said.