“Please do attend my daughter’s wedding,” said the nearly six feet, fair and gentlemanly Ramakrishna formally, in his soft voice. He got up from the Sofa and handed me the wedding invitation card. He was my close relative and a more intimate friend. He had mentored me many times on business matters.
“Sure, Ramkrishna,” I said.
He settled back in the Sofa, looked at my eldest daughter, Yogita, playing with a hairbrush on the floor.
“Yogita is your daughter’s name no Mohan?”
I said “Yes”.
“What do the doctors say?”
“We are planning to take her to Mayo clinic in the U.S. for further examination”, I said.
A few months earlier, Mamatha and I were devastated to learn that our daughter seemed to have a major problem with her vision and we were determined to get her the best medical care possible.
“When are you planning to leave?” he asked, rather hurriedly.
“June, why?” I asked.
“Good that you will be here for Usha’s wedding,” he said.
“Please be there at all the rituals.”
“We will surely be there,” Mamatha said.
He looked down at the floor briefly and said: “We have been fortunate to get a groom like Karthik, you know. He comes from an affluent and famous family background”.
“Usha is a great girl too. The groom is lucky”, I said.
He smiled and continued;
“It was only after elaborate astrological scrutiny that his parents accepted Usha. They are very picky, the mother is particularly keen that everything about my side of the family is perfect”.
“Oh,” I said a trifle indifferently.
“You can leave Yogita with your in-laws” he mumbled quickly.
Mamatha and I looked at each other. At that moment it appeared as though he was concerned about our difficulties in taking Yogita to a noisy public event.
“No, no. We take Yogita everywhere we go”, I said innocently.
“I hope the groom’s parents will not get to see Yogita at the wedding, “he said.
I felt a sudden bottomless pit in my stomach. He did not want the groom’s parents to see Yogita at the wedding. I was shocked that a highly educated man and my friend of 10 years chose to tell me not to bring my disabled daughter to the wedding instead of choosing to ignore his fear of losing the groom. If my kin had this view of Yogita, I shuddered at the thought of the degree of discrimination that Yogita would have to face all her life.
I felt as though the walls were closing in on my child and us.
I was 31 then, and I saw for the first time in my life how society could see only one facet of a child block their view of her totality. This mental myopia is what of marginalizes children with disabilities failing to see the child before the disability.
Parenting a child with special needs brings much judgment from society their cruelty, the discrimination and inconsiderate statements that can often make us feel all alone.
What should you do when you come across children with disabilities?
-Avoid pity. While it’s sometimes hard to imagine the challenges of special needs parenting, pity doesn’t help. Pity can reinforce the frustrations and feelings of isolation. Pity is to feel sorry for others and do nothing having placed yourself with the other.
Pity places you above the person; compassion makes you equal.
For Yogita’s sake and the sake of society at large, Mamatha and I had to stop feeling sorry about ourselves and Yogita and stop measuring our success by how much we did for Yogita and start measuring it by how much she could do for herself. We realized that it was not wise always to make life easier for Yogita; we needed to prepare her to deal with the tough stuff, manage without us. And for them to continually grow and develop, we had to choose to make her come to terms with a normal family surrounding. That meant having siblings. Mamatha decided to have more children.
-Relax and don’t get nervous. Children with disabilities may be new to you, but to the child with special needs, it’s a fact of life. There’s no need to get nervous or tentative around the child. Some people have difficulty being around children with special needs. Try getting over the stress, and learn to accept and appreciate for who they are.
-Interact. The biggest mistake that you can make when you meet someone like Yogita is failing to interact with them. Usually, people try asking questions (that they won’t answer), then give up and start talking to the parents.
First, introduce yourself and explain how you are related or connected to the child. Talk to them the same way you’d talk to other kids their age without a focus on their disabilities. If they don’t respond, take the child’s hand, place a hand on the child’s shoulder or even touch each other’s faces, to make a proper introduction.
-Offer to babysit at a time convenient to you. Yogita was very curious about her surroundings wherever she was. She stretched out her arms and used them like white canes that blind people use and fingers to feel things, Yogita walked holding on to walls and furniture. We had to make sure that she did not insert her finger in electrical sockets or running fan blades, Mamatha and I had to take turns round the clock watching her. It was exhausting.
If it’s within your comfort and ability zone, give such parents a break by looking after their special needs child for an hour, an evening, or even a weekend. They call it respite care, and it’s an extraordinary gift.
-Watch how you refer to them. The terminology used to describe people with disabilities has been changing along with changes in society’s attitudes. Terms like “mentally retarded” and “disabled” were used a few decades ago. In recent years, it has become important to emphasize the individual, not the person’s disability; e.g., “individuals with mental retardation” rather than “mentally retarded people.” People with disabilities want to be recognized for their abilities, not their disabilities. Some individuals prefer the term “differently abled” rather than disabled.
Today marks the 23rd death anniversary of my late daughter Yogita. She died on 19th of December 1997.On this day, I have just one request to everyone out there; please give a thought and change your outlook about people with disabilities. They are people first, with disability next.
In the end, disability or not, we are all same at the soul level.