Super Subcultures

A Rare Blood Disorder Could Wipe Out This Ancient Tribe

In a tiny jungle village in West Bengal, India, the Totos of Totopara hold tight to their traditional way of life. But can they survive without compromising their ideals?

A Rare Blood Disorder Could Wipe Out This Ancient Tribe

“Whose curse has befallen this village?” Lasey Toto shouts at the dark clouds. Intermittent flashes of lightning emerge, as if an angry reply to his emotional outburst is being offered from the heavens. “Why am I alive to see so many deaths in front of my eyes? What bad have I done to carry my son’s hoku [coffin] to the grave on my frail shoulders?” The 92-year-old is barely able to bear the trauma of the death of his eldest son, Krishna, who was 53.

Lasey is not alone in his grief. He is part of the Toto community, a tribe with a population between 1,500 and 1,600 people, who live in a small village called Totopara. Located in Eastern India, near the Bhutan border, Totopara is enclosed by the mountains set along the Torsa River delta. The surrounding dense jungle keeps the village isolated from the turbulence of the outside world; the screaming of peacocks and the coo-oohs of Asian koel birds offer a panacea to the stress and worries of everyday life in Totopara.

A naming ceremony, referred to as, “Madipaepawa.” The ceremony is performed on the 7th day after birth for a girl, and on the 5th day for a boy.

Standing in front of his na-ko-sha – a dwelling erected atop wooden poles, six feet above the ground, with a roof made of straw – Lasey says his son Krishna began to lose weight and complained of headaches and loss of energy three months before he died. “He had become too weak in his last days and was unable to walk,” Lasey says. “He died inside the house. It seems that an evil power wants to devour us.”

Just a few days earlier, a couple in the tribe, both in their late 40s, also died shortly after beginning to complain of weakness and swelling throughout their bodies. They left three children behind. Their eldest son, Shimo, 22, now has the responsibility of running the family.

A multitude of recent deaths with hauntingly similar circumstances have some made people fearful that the Totos could soon be completely wiped off the Earth.

The Totos’ origin, says K.S. Banerjee, an anthropologist in Kolkata, India, “is yet to be completely known, but they are considered offspring of some Indians who had settled in Bhutan, and were then driven out from the country to the plains of the sub-Himalayan zone of the Dooars.” Their forced migration occurred in the middle of the 18th century, and, according to Banerjee, the Totos consider themselves descendants of Mongoloids. Their facial features bear a resemblance: “They have flat noses, small eyes, broad and square cheeks, thick lips and black irises,” Banerjee observes.

There are also theories that the Totos might have integrated with fugitives from Bhutan, whose forefathers had been dragged away to what is now West Bengal and enslaved at about the same time the other band of presumed Toto ancestors were on the move.

Today, the village of Totopara has two schools, serving kids through the 12th grade. The women of Totopara do much of the household work and attend to all their children’s needs. The women also earn bread for their families by chopping wood and rearing cattle to sell to local markets. Totopara men work a variety of day jobs within the village, though some hop the border to Bhutan, where a thriving tourism industry provides work in hotels.

Totos have their own spoken language, which is endangered due in part to the lack of a written component, and the fact that the state language, Bengali, is taught in the schools. But it is the Totos themselves that may be facing annihilation.

According to Indian Census figures, there were only 321 Totos in Totopara in 1951. Over the past 66 years, slightly more than 1,200 have been added to the tribe; however, thalassemia – a blood disorder that makes its victims pale and thin, and also enlarges their spleen, liver or heart – seems to be the culprit in an alarming number of recent Toto deaths. Dhaniram Toto, an activist and tribe member, who is himself a thalassemia carrier, says the Totos’ average life expectancy now stands somewhere between 50 and 55 years of age.

“I understand that my tribe has been dwindling, but what can we do?” he says. “We generally do not allow inter-caste marriages [marrying outside the tribe] to safeguard our community, but doctors say that it is the only way out to save us.”

A study performed by a private health care institute in Kolkata, in tandem with the Indian government, found that 49 percent of school-aged and unmarried Totos between 2009 to 2012 were thalassemia carriers. About 20 percent of the 443 Totos tested were already experiencing complications from the disorder.

“The results were really shocking,” says Dr. Ashis Mukhopadhyay, who led the team that conducted the study. Mukhopadhyay contends the Totos’ rigid social customs, like the restrictions on inter-caste marriages, have proven to be a major hurdle in their ability to thrive. “Awareness among [the younger Totos is] important for the survival of the tribe,” Mukhopadhyay says. “We clearly instructed them to stop marriages between two carriers or those affected with the blood disorder as it could result in offspring born with the ailment. They were told to search for matches even outside the community for their survival.”

But Dhaniram Toto defends his proud community: “We have our own separate identities and culture; the marriages with outsiders would destroy [us]. It would be a cocktail with no indigenous Toto left.” He says that a man or woman who goes against societal norms, such as marrying someone who is not a Toto, is forced to leave the village.

Yet years of intermarriage among the tribe are now contributing to the dire health problems. Among the recent deaths in the village were Gomen Toto and his wife Chuchi ma, who Dhaniram says were about 45 and 50 years old, respectively. They died within three months of each other.

Khuishangpawa, the Totos’ death ritual.

“I don’t know what happened to them,” says the couple’s eldest son, Dilee. “Their bodies had swelled and [they] were having problems walking. Doctors told us that they were suffering from a shortage of blood. We were planning to take them to the far-away hospital, but couldn’t do so because of financial constraints.”

The hospital Dilee references is located 25 miles away in the town of Birpara.

Dr. Jayshree Basak, a physician based in Kolkata and part of the team that examined the Totos for the government-backed health study, says that the bodily swelling the Totos are experiencing occurs because of a spleen infection brought on by thalassemia during its late stages.

Basak says thalassemia sufferers also face decreased hemoglobin levels, and that such patients require regular blood transfusions. “But Totos hardly have any awareness about the disease,” Basak observes, “and consider death to be a curse of some evil power.” Basak also points out that because the Totos don’t allow autopsies, it’s a challenge for doctors to truly understand the causes of these deaths, and adds that it will be difficult to save the tribe unless their lifestyle is modified.

In addition to thalassemia, “the overconsumption of the local liquor and high intake of non-vegetarian food leads to the iron deposition in the body that damages vital organs,” Basak continues. “The high presence of iron in anemic patients proves fatal and causes death. They have to eat healthy food to live longer and prevent their tribe from vanishing.”

Dhaniram Total concedes that the high consumption of eu – fermented liquor made from marua (a small grained cereal), rice powder and malt – along with beef and pork, may be to blame for the recent spat of deaths in the village. He says that many Toto men and women “start consuming the drink in the morning hours; even the toddlers are made to consume the liquor in small doses because they sleep for hours after taking it, as their parents go to work as laborers. The drinking habits that start developing during the childhood days soon turn into intoxication as they grow up.”

Bakul Toto, a young leader of Totos, blames the Indian government for this decline in Toto lifespans. “We agree that most of us are suffering from a blood disorder,” Bakul says, “but the big question is what the government has done even after its detection. The reports of the blood test were handed over to us [and] not even a single medicine has been given to cure us of the disorder. The tests were done on 400-odd people, but what about the others?”

A lack of understanding about the situation in Totopara has proven problematic. Dr. Sabyasachi Saha, a medical officer at the nearest government-run primary health center in Madarihat, some 13 miles from Totopara, was completely unaware of the prevalence of thalassemia among the Totos. “None of the patients of thalassemia has ever turned up for treatment,” she says.

But some Totos argue the cost of traveling to places like the primary health center make it impossible to get treatment. The doctors must come to them, in Totopara, they say.

Although Asali Toto’s exact age cannot be determined, many say she may be the oldest Toto woman living.

“It is not only money but the hard terrain is also a major problem, as we have to cross eight rivers to reach the health center in Madarihat,” says Dhaniram Toto. “The transportation is not regularly available.” He adds that hardly anybody ventures out of Totopara during night hours for fear of being attacked by animals. 

It is during daylight the village is most vibrant, especially as schools let out at five p.m. The freewheeling children laugh and giggle, their chortles beating away the glumness that hangs heavy in Totopara throughout most of each day.

It makes one wonder how long these currents, both happy and sad, might continue to run through Totopara.

Read our Storyteller Spotlight interview with writer and photographer Abhijit Alka Anil here