Country needs effective cerebral palsy care

Sitting in her chair in office, one finds Neha, 26, handling files and typing on the keyboard with ease, albeit slowly. Only when it comes to drinking tea, one notices that she does not have enough grip and has to be fed by others.

When the world observes Cerebral Palsy Say on September 4, Neha, in her own silent way, inspires several around her, even those without any apparent disability.

“I was six months old when my parents found out that I suffered from cerebral palsy. I could not turn on my own like other children of my age,” said Neha. She said the flaw lied with the junior doctor, who did not give her oxygen in time, leading to damage of the coordination nerve that sends signals to body parts, primarily responsible for balanced movements.

“The senior doctor had left and the junior did not know enough,” said Neha with anger in her voice. Her father disagrees, saying that CP is a condition that can occur to anyone, and Neha’s case was one of those.

“We took her to all social gatherings and functions. This gave her confidence as people would tell her that she is doing well,” said Neha’s father. However, pointing out flaws of the system in the country, he said, “Despite all efforts by us and Neha, proper employment for her remains an issue. The government has to take responsibility and ensure jobs for such people.”

As only one nerve was damaged in Neha’s case, her cognitive abilities were not affected, still many school denied her admission before a private school agreed to take her in. She scored 80 per cent in 10th board, and received 99 out of 100 in Accountancy in class 12.

Then she pursued Bachelor of Computer Applications (BCA) and Masters in the same subject.

“More than 90 per cent of cerebral palsy patients with physical disability can lead a normal life with early diagnosis and proper medical treatment. Contrary to popular belief, most children with CP have average or above average intelligence. School administrators should look towards including disabled children in mainstream education. Having a disabled child as a classmate will certainly change the perception of their able-bodied peers,” said Dr V B Gupta, neurologist, Apollo Hospital.

“I could study. Just my handwriting was bad,” Neha said, giggling. When she applied for staff selection commission’s job, her typing speed was tested according to standards for general category people, devoiding her of getting the job.

“I think they should have a separate category for people with 70 per cent and above disability in addition to 40 per cent and above. People with normal IQ and high disability should be given government jobs as the private sector does not take them,” said Neha’s father.

Neha found her calling among young patients fighting against cancer. Working with NGO Uday Foundation, she gets many chances to visit cancer OPDs and participate in storytelling.

“The most memorable moments were when I celebrated Republic Day this year with children suffering from cancer in AIIMS’ OPD. Seeing them I felt my problem is nothing compared to theirs’. It was quite moving,” said Neha.

Three out of every 1,000 children in India are affected by CP. “The need to bring up the concerns of those living with disabilities as cerebral palsy becomes urgent as the scenario for the country’s disabled population (2 per cent of total population) has not significantly improved till date,” said Dr Gupta.