Hong Kong: From a distance, Kausalya Devi looks like most rural housewives in India—she is squatting on the ground, bent intently over dirty vessels.
As you come closer, you see the 20-year-old can’t do much more than crouch: her legs are short, limp appendages, crippled by childhood polio.
The mother of a two-year-old son, Kausalya can’t move on her own and must be carried by family members. A month ago, she lost her second child, a baby born two months early after local hospitals struggled to give her the medical care she needed.
In rural India, where marriage is often a business transaction involving dowries, young women with disabilities are married off into the poorest families. Women who can’t labour in the fields are expected to bear children and end up in a government health system that is ill-equipped to treat them. Others end up with husbands who demand a steady stream of financial payments or even property from their families.
“Poverty in this part of Uttar Pradesh is a big problem—when these men marry a polio survivor it is because they are too poor to get a normal wife,” said I.S. Tomer, a physician and the mayor of one district in the northern state. “Honestly, if somebody is marrying a girl who is polio-affected, he’s marrying for the sole purpose of having children for his family.”
While India has had no new cases of the polio virus for the last three years due to massive vaccination programmes, it is struggling to protect the victims of previous epidemics. The World Bank says the country has as many as 90 million people living with disabilities, including those caused by polio—most of whom endure discrimination, barriers to employment, poverty and violence.
A 2005 study of disabled women in Orissa found that a quarter of women with mental disabilities and 13% with visual, hearing and physical disabilities—such as those caused by polio—reported having been raped.
There are no reliable statistics on how many people in India live today with polio. The number could be large because the country once accounted for more than half the world’s infections and had 150,000 cases as recently as 1985.
The polio virus, an infectious disease that is spread through contact with feces or droplets from a sneeze, attacks the nervous system and can cause paralysis within hours. It kills as many as 10% of its victims.
Once almost driven to the brink of eradication, the disease is rearing its head again in the conflict zones of Pakistan, Cameroon and Syria, and the World Health Organization earlier this year declared it a global health emergency.
Nearly half the respondents in a 2005 AC Nielsen and World Bank study that surveyed more than 1,400 households in Uttar Pradesh and Tamil Nadu believed the disease was “a curse of God.” Almost half believed an adjustment in dowry was necessary if a disabled person married a non-disabled spouse. Women are among the worst hit.
“Polio-affected women mostly are married to people on their second marriages, or very poor families,” said Surabhi Shukla, a district coordinator for a United Nations Children’s Fund programme that vaccinates children in Uttar Pradesh.
Every girl’s dream
In India, where the rich spend millions on lavish weddings and Bollywood films are centered on matrimony, having a spouse can translate into greater social acceptance and security.
“Every Indian girl dreams of getting married,” said Sandhya Jha, director of Shikhar Prashikshan Sansthan, a non-profit that works in Kausalya’s district. “You have to look at the other side of this. For a girl who has had polio, the fact that somebody would accept her, that makes her very happy.”
India’s many online marriage sites allow users to search for physically handicapped partners, giving the disabled a shot at marriage. A non-profit in Udaipur conducts free “mass weddings” for young women and men with disabilities—mainly from polio. The aim of these weddings is to find partners for low-income people with disabilities, who ordinarily would be marginalized in Indian society.
“Marriage means a lot for a girl—even a girl who is not disabled,” said Ravish Kavdia, a spokesman for the group, Narayan Seva Sansthan. “In rural villages, after a certain age, it’s hard for the family as well as the concerned person to live in the society freely if they are not married.”
For Manisha Wagh, getting married at 19 to an unemployed cable repairman was anything but a silver bullet.
She was one of seven children who contracted polio in the densely packed tenement in Mumbai where she grew up. One night in 1984, 3-year-old Wagh came down with a high fever and by the next day, paralysis had set in.
Although she was one of the lucky ones who didn’t lose her mobility, the virus left her permanently disabled—she keeps her underdeveloped left leg pressed with her hand as she walks to keep it from buckling under her.
“He was introduced to us by a relative,” she said of her former husband. He wasn’t disabled, and her mother agreed to the match.
It became clear soon that the proposal came with strings attached. For marrying a disabled girl, he expected to be compensated, Wagh said. He quit his job three months after their wedding, and asked Wagh’s mother to buy him an Rs.1.8 lakh rickshaw. She refused.
Financial desperation, worsened by the addition of a baby, made Wagh look for work. She found a job in data entry at a chemical company that paid Rs.12,000 a month and eventually divorced her husband.
Her mother let her come home. “She feels bad because she married my sisters to good people, but made a wrong decision in my case,” Wagh said. Now she is remarried to a man she grew up with, with whom she had a second baby girl a month ago.
She knows she’s luckier than many women in India—for having a supportive mother, for being educated up to the 12th grade, for having job prospects, and, finally, for a second shot at marriage.
She was also lucky that her new husband, a rickshaw driver in Mumbai, could afford the Rs.45,000 it cost to deliver her second daughter by cesarean section at a reputable private hospital. She smiles as she talks about her new husband, Lalit. “He sees me as a normal person, not as somebody to get something out of.”
In Uttar Pradesh, the combination of poverty, disability and ill-equipped clinics had heart-breaking consequences for Kausalya. While female survivors of polio can have normal pregnancies and bear healthy children, they require more care during pregnancy and child birth.
A 2007 study by researchers in Norway found they had more complications such as preeclampsia—a potentially fatal pregnancy condition characterized by high blood pressure, kidney damage and renal disease. They were three times as likely to have deliveries complicated by obstruction, and had higher rates of C-sections and stillbirths.
Decades after an infection, victims can develop post-polio syndrome, where muscles start further weakening. Polio survivors with paralyzed lower limbs in rural India or in urban slums often crawl or use their arms to drag themselves along the ground, without walking aids. Many young boys end up begging for money.
The community health center Kausalya went to when she began feeling shooting pain in her womb, two months before her due date, didn’t have blood storage, Bloomberg News found on a visit there. It also didn’t have the ability to perform C-sections. R.P. Gupta, chief medical officer of Mirzapur district, didn’t immediately comment.
Kausalya was next referred to a government-run district hospital. There she waited for a day and was never seen by a doctor. Her pain continued, and her designated village healthcare worker recommended she be taken to a private hospital about 40km away. There, Kausalya gave birth to a second baby boy by C-section. He lived for about 10 minutes.
India’s Persons with Disabilities Act—its main law for people with disabilities including those caused by polio— focuses mainly on prevention work such as vaccination, the World Bank says, and doesn’t make commitments for treatment and rehabilitation.
On a sultry afternoon in Kausalya’s village of Indiranagar, her father-in-law placed her on a cot so she could talk at eye level. Kausalya is a member of the Kol tribal community of northern India, which once relied on the forest for income—selling leaves and timber. In this district, members are now mostly landless agricultural laborers, and the family lives in a one-room mud home thatched with shingles and twigs.
Kausalya said she was feeling better, but her eyes were full of tears and face furrowed with worry. Her husband sat wordlessly, never addressing his wife.
Her mother-in-law, Jashodhara Devi, was crying and angry that the family had lost a male child. “The baby boy is dead,” she said, again and again. “They killed our boy.” Bloomberg