Sirojiddin Toghaev is dependent on crutches, a wheelchair, or scooter to move around.
A resident of Uzbekistan’s southeastern Surkhondaryo region, he blames his health condition on being born in a consanguineous marriage.
“My father married his cousin, the daughter of his father’s sister,” he said. “It was arranged by my grandfather. My elder sister, Oibahor, and I were born with birth defects because our parents were blood relatives.”
The only healthy child in this consanguineous marriage is Firuza, who has been looking after her brother and sister since their parents died a few years ago. The siblings, all in their 30s, live in their parent’s house in the town of Denov.
Marriage between bloodline cousins is widespread in many parts of Uzbekistan, especially in the Toghaevs’ native Surkhondaryo and the neighboring Qashqadaryo region.
Uzbek authorities now want to end to the practice, blaming the phenomenon for genetic disorders among newborns.
The Committee for Family and Women’s Affairs has published draft amendments to the country’s Family Code, proposing that the parliament put a ban on marriage between cousins, including both first and second cousins.
The amendments aim at “preventing babies being born with disabilities,” the document states.
Some international studies show that marriage between blood relatives raises the risk of babies being born with birth defects because when two closely related people reproduce, there is a higher likelihood that both parents carry the same genetic mutation.
According to official statistics in Uzbekistan, nearly 10 percent of the babies born with disabilities in 2023 in the country were children of consanguineous marriages.
Nearly one-third of the cases were recorded in Surkhondaryo, followed by Qashqadaryo, the two provinces that also have the highest number of cousin marriages. According to one report, about 60 percent of the 1,210 first-cousin marriages registered between July and December 2021 took place in those two regions.
A high number of babies born with disabilities last year was also reported in the Sirdaryo, Andijon, Samarkand, and Bukhara provinces.
In the first five months of this year, about 29 percent of the 6,660 children treated for various illnesses at the National Pediatric Center in Tashkent were born to cousin marriages, Uzbek media reported.
Some Parents Not Convinced
Calls to restrict or prohibit consanguineous marriages in Uzbekistan began in the early 2000s. But the tradition continues to be strong despite doctors’ and officials’ warnings about the potential health risks to babies.
In the eastern Namangan region, Sabohatkhon Alimova has been married to her first cousin -- the son of her maternal aunt -- for more than 40 years. Her own parents were also first cousins.
Alimova, who hails from neighboring Tajikistan, insists all four of her children were born “healthy and normal.” Two of them went on to marry relatives.
“There is more trust and love among relatives [and] there are not many divorces in such marriages,” Alimova said. “When your daughter-in-law or son-in-law is your relative, you know that they will look after you when you’re old and sick.”
But Toghaev, who struggles with disabilities in his everyday life, believes it is the children that pay the price for their parents’ decision.
“Recently, our provincial governor wrote on the Internet: ‘Don’t marry your relatives. Your children will suffer as a result, not you.’ He is right. People should think about it when they consider getting married,” he said.
Toghaev and his sister Oibahor, who walks with a severe limp, say they try to survive and make the best of their difficult situations.
Oibahor works at a kiosk where locals receive remittances sent by their relatives working abroad.
Toghaev uses his special mobility scooter -- a gift from the provincial government -- to take his sister to and from work. The scooter, which resembles a small pickup truck, enables him to carry goods if needed.
He also raises four sheep and grows vegetables to generate income. He says he made $80 selling radishes last month.
But for most of the household chores they depend on Firuza, the only able-bodied sibling in the family.
“We all face hardships. I do all the work in the house,” Firuza said. “My brother and sister have physical disabilities and I take care of them.”
