“I am her world,” says Nagarathinam, with fierce pride. The mother of a child with cerebral palsy, she shares a unique way of communication with her daughter whose seemingly incoherent words make sense only to her. Motherhood, celebrated worldwide every second Sunday of May, for mothers of children with special needs like Nagarathinam signifies full-time role as caregivers.
“It hurts me that people regard my daughter as a punishment for sin. But she is brave, has beautiful handwriting, can sew clothes and make paper cups which I hope will help her stay self-reliant in the future.” Though she has strived to make her daughter self-reliant in small ways, Vinodhini is dependent on her mother for many necessities from feeding to grooming, and does not know a separate existence from her. Initially shocked when the second of three daughters was diagnosed with the condition, the wife of an auto driver turned cabbie, Nagarathinam, now works at the masala powder unit for mothers of special children at Spastics Society here while her daughter receives therapy. “I can never stay angry with her for long. When she flashes her lovely smile, all my anger dissipates,” she adds.
For Asanama, domestic help and mother of a paraplegic, fate has never been her best friend. Thirty years ago four infants from her extended family went for the polio vaccine but one turned back lame–her son, Abbas. The administration of the vaccine despite a cold infection is said to have turned him a paraplegic.
When doctors pronounced that her son would never walk again , single mother Asanama, abandoned by her husband while pregnant, felt her hopes crash. Residents in K.K.Nagar have seen the young mother carry her tall boy on her rounds as domestic help in her bid to make ends meet, give him a decent education, and little luxuries she could afford. “I carried my 12-year-old son to Chennai for his vacation as I didn't want him to feel deprived of a normal holiday like his classmates,” she says.
Subathra (name changed), prays everyday for strength to reveal a secret to her 12 year old son–that they have more in common than a mother-son bond. Both are HIV positive. Despite being on ART drugs for seven years, Subathra's CD4 count (yardstick to determine immunity in AIDS patients) has not increased. “I have been weighed down by stress since my husband died of HIV-AIDS. I am used to all the sceptical glances. But I keep wondering how I would raise an innocent child with a deadly disease, in a society that is so intolerant?,” she says. Her son's absence from school has led to uncomfortable questions from school authorities who have been informed the boy is a heart patient for fear of denial of admission. “When I give him extra dosage of medicines every time for fever and cold, he wants to know why his sister (non-positive) is not given the same. I dread revealing the condition to him.”
Income generation opportunities for widows of HIV-AIDS patients would give mothers like her an impetus, says Subathra, an assistant in a xerox shop. “ I am confident of seeing him in a good job some day.”