Ajit Nayak is my brother-in-law and he is mentally and physically disabled.
Since I’ve known Sasmita, I have heard stories about her brother who is two years older than me and his disability.
One day this summer, my father-in-law Valentine and I were chatting about life in Village Alligonda. He began telling me about Ajit, referring to him as ‘the great family tragedy.’
The story goes something like this: When Ajit was eight years old he and his mother went to the local pond where his mother usually washed clothes. She was beside him, beating the clothes into the stones, cleaning them and he was playing nearby with his hands in the water.
Suddenly he slipped and fell into the water. Polina, horrified because she could not swim, jumped immediately into the waterhole and tried pulling him out. Thankfully the water was only waist deep. After a struggle she was successful, but Ajit nearly drowned.
Polina took him home, where he came down with a high fever almost immediately. He would never be the same.
During the following years, Ajit had constant fevers, and his parents believing they were merely high temperatures that would pass after a few days, dismissed them.
Unfortunately during the mid to late 1980’s there was no possible way to visit a hospital from Village Alligonda. The nearest one was miles away. The bus that now runs the three hours and change from Berhampur (the city where Sasmita and I married) to Village Alligonda didn’t exist. Going to the doctor was a luxury the Nayak’s could not afford.
Three years after Ajit escaped death, he began having seizures and lost mobility in his limbs.
His parents began taking him to doctors because they realized something was seriously wrong with their son. Valentine took Ajit to hospitals all across India looking for medical answers.
What really happened, we now know, was a bacteria (similar to Polio) entered Ajit’s blood stream during his near drowning. During the few years afterwards, when he was suffering from what his family thought were fevers, that bacteria was slowly destroying his brain and his spinal cord.
The Nayak’s spent nearly their entire life savings trying to ‘fix’ their son. It was to no avail.
Today Ajit takes medicine for his seizures, but has not left his house in more than 10 years.
He communicates by grunting. Most days he sits outside on the Nayak’s stoop staring at the world with a blank expression on his face. Sometimes he smiles, or says a word or two, but most do not believe he actually understands his surroundings.
For example, I don’t think he knows I married his sister Sasmita, or that I was from the US and visiting his house for a week this summer. We would smile at one another, but I am not sure he actually understood who I even was or that I was a part of his family.
Mostly he just shuffles across floor moving from room to room. He cannot balance without someone holding him and both parents bathe him and help him use the toilet.
Adding to the heartbreak are his sudden flashes of terrifying violence. Almost all Nayak family members bear scars from where he has cut them with a knife, scissors or another sharp object. He has destroyed nearly everything valuable in the Nayak’s house.
That anger flared two different times in the six days I spent there. One morning the house awoke to Valentine screaming in pain, because Ajit was beating him with a belt. Another time, he began choking the infant baby of Sasmita’s sister. The sister had put her child in Ajit’s arms and until that moment he was lovingly stroking the baby’s face. His demeanor changed instantly.
As an outsider I was shocked. But they are used to it and quickly, but firmly pulled the child out of Ajit’s arms. As far as I could see, they will sit with Ajit and allow him to play with kids, but it requires ceaseless vigilance, ready at a moment’s notice to pull him away or a child out of his grasp.
This volatile nature requires someone to always stay home and watch him. Because of this, two of Sasmita’s sisters were unable to attend our wedding, because they needed to stay back and look after both the house and their brother. Outsiders would never babysit him and he cannot be trusted in public. This affects the family negatively in another huge way, he’s their only son.
In India, many families rely on the men of the house for protection of both property and lives. Sometimes that role is fulfilled by a son-in-law, if the daughter marries. Because everyone knows neither Ajit, nor Valentine (because of his age) poses a physical threat to them, the Nayak’s house has been robbed numerous times. Villagers take advantage of the Nayak family constantly because of Ajit. It infuriates me.
Ajit is just one of the estimated 60-80 million disabled Indians. In many situations they are neglected by their families, living on the streets, with no one to support them, because India lacks institutions to meet their needs.
Ajit’s narrative is emblematic of the problem facing many impoverished people around the globe. When people are disabled in locales like rural India and cannot ‘function’ in everyday life without constant assistance, what recourse does a family have?
In the U.S., a person like Ajit would probably be in a home, receiving nearly round-the-clock supervision and on a rigid daily schedule. In India’s hinterlands however, that option is nonexistent.
Ajit’s medical care in an outside facility would be prohibitively expensive and Sasmita told me numerous times, even if her parents could send him elsewhere, her mother would never agree.
A year ago Sasmita and I were driving around the campus at Duke University, looking for the Chapel. Instead we ended up driving through the parking lot of Duke University Hospital. When she saw the sign for the hospital I told her, it was one of the best hospitals in the country. Her immediately response…”maybe they can fix my brother.”
I don’t know if the hospital could, but I do know that the Nayak’s love Ajit with everything in them and have sacrificed their lives trying to give him the best life possible.