No Empathy, Few Jobs: Life’s No Fairy Tale for This Dwarf Family
Jobs that can accommodate their particular condition are elusive and empathy hard to find.
53-year-old Ram Raj Singh Chauhan says that he rarely takes his whole family for outings beyond the confines of their Mir Chowk neighbourhood in Hyderabad’s Old City.
The gawking, laughter and teasing is too much for them to take, he explains.
It’s not the curiosity of children he minds so much. “When kids ask us questions like, ‘Why are you so short, uncle?’, I don’t mind. Children are inquisitive, and I answer patiently and explain to them, that there’s nothing wrong about being different,” he says.
It’s the unkind stares and comments from adults who crowd around his family whenever they go out in public that hurt Ram Raj the most.
Ram Raj’s family stands out in public because a majority of them are affected by a genetic condition called achondroplasia, which causes short-limbed dwarfism. Most of them, therefore, are dwarfs.
"I had seven sisters and four brothers. Out of those, eight of us were short. At one point, we had 21 people in our family, of which 18 people were dwarfs," says Ram Raj, now the head of his family.
Their condition doesn’t just make for uncomfortable social situations.
My father, Narsing Rao, and my grandfather also faced the same problem. My father died when I was 16, leaving us with a lot of responsibilities. My eldest brother died in 2000, leaving me to run the family.Ram Raj
“My mother was a courageous woman, and she raised all of us by doing odd jobs till we could take care of ourselves. She is over 90 now, but still alive. Unfortunately, my wife died in 1993, when she was pregnant with our third child,” he adds.
Despite all of the grief Ram Raj has experienced, he continues to believe that God "made him this way" because he was special.
"My father always used to say that. It helps us accept the situation we are in and be grateful for what we have," he says.
Ram Raj works as a “wedding greeter”, standing at the entrance of weddings and other events, dressed up in elaborate costumes, to greet arriving guests. When he’s not busy with a wedding, Ram Raj helps out at the grocery store his family runs in their neighbourhood.
Jobs that can accommodate their particular condition, however, are elusive, and the family depends on the few members not affected by dwarfism to support the rest of them.
We can’t do jobs that other people can. Since our arms are also short, even something like sitting on a desk and leaning forward to write, is tough. The taller people in the family do regular jobs, while we manage the shop and do other odd jobsRam Raj
It comes as no surprise, then, that the family has been facing financial difficulties.
"We manage to put just about enough food on our plates," Ram Raj explains. However, he adds, "I have been getting older and my hands and legs are getting weaker. My younger brother is not even able to walk now because his legs are too weak."
Researchers and scientists still don’t have a cure for achondroplasia, which means that the genetic disorder continues to take a toll on succeeding generations of Ram Raj’s family.
I can’t walk for more than 10 to 20 feet at a time. I need to take short steps and constantly take breaks to breathe. We can’t eat a lot of food at once. We have to eat little portions every few hours.Ram Raj
For now, Ram Raj says that his younger brother Ashok Kumar, who does not suffer from the genetic disorder, has been helping them the most.
"He used to take all the girls in the family to school and bring them back on his cycle. He still carries my belongings and helps me at the locations where I have to go for my job," says Ram Raj.
Despite all his troubles, Ram Raj reiterates constantly during our conversation, that his family would like to work for a living and not be handed things for free.
However, the government has to make a special exception for us. We can’t perform at the jobs that they offer us. That is why we are asking that they help us in setting up a small stall at a bus stop, railway station or any other busy junction near our house, so we can somehow make a living.
Ram Raj adds that the only assistance from the state government his family requires is a steady source of income.
"At the end of the day, we want empathy, not sympathy. Me, my brothers and my sisters have survived and now it is up to the next generation of our family to eke out a living," he states emphatically.
(This article was first published on The News Minute.)
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