Parents alone in fight against society
For Ayesha Islam*, every day is like a battle.
Her life largely revolves around her 12-year-old daughter Ahona*, who has Down syndrome. Ayesha has to fight her way through the unkind words and gestures of neighbours, acquaintances, and sometimes even strangers, every single day.
"Our neighbours often say hurtful things about Ahona, and their kids aren't nice to her either. Sometimes, strangers stare or make comments when they see my daughter. And it's not easy for a mother," said Ayesha.
She wanted to join work after completing her studies, but could not do so as she needed to take care of Ahona all the time.
Ahona now studies in class 3 at Society for the Welfare of the Intellectually Disabled (SWID) in Dhaka.
When the doctor informed us about the condition of our son Ramim*, his father struggled to accept the reality. And one day, he left us. From then on, I raised Ramim alone, despite all the odds."
"Then there's the constant worry about Ahona's health and future. But we keep pushing forward, hoping for a better tomorrow," Ayesha added.
Down syndrome is a genetic condition where a child is born with an additional chromosome. This leads to delays in physical and intellectual development, lower-than-average thinking ability, weak muscles and joints, and distinct facial features such as slanted eyes, a flat nose, and a small chin.
According to the Population and Housing Census 2022, out of a total of 23,61,604 persons with disabilities, 1.08 percent or 25,505 are diagnosed with Down syndrome. However, there are no statistics on the number of children with this condition.
Parents of children with Down syndrome all have different struggles.
"When the doctor informed us about the condition of our son Ramim*, his father struggled to accept the reality," said Ruksana Amin*.
"And one day, he left us. From then on, I raised Ramim alone, despite all the odds," she said.
"Over time, as Ramim excelled in his academic and personal life, his father realised his mistake," Ruksana added.
Raisul Alam*, a factory worker in Mohammadpur, is extremely worried about how to raise his daughter, Fatima*.
"It is hard for me to take care of her with my salary. She always stays at home because it's unsafe outside. Out of fear, we did not admit her to school either," he said.
"What worries me most is who will marry her? Will she find someone who loves her as much as we do?" Alam added.
Stressing that social stigma still exists regarding disability in the country, Prof Tahmina Akhter of Institute of Social Welfare and Research at Dhaka University said, "The first obstacle comes from family. Parents sometimes see the child as an outcome of some sin. The rest of society bullies children with disabilities and their parents, while also not allowing these children to grow up like other kids."
"The government provides a disability allowance. To avail of this, a form has to be submitted through the civil surgeon. But many disabled persons are deprived of the allowance as their caregivers are not aware of it," she said.
Prof Tahmina also said children with Down syndrome are very talented and will have employment opportunities if they are given skills-based training.
"We have laws to secure the rights of people with disabilities. If these are successfully enforced, social inclusion will increase. At present, families are more aware. Earlier, the families used to hide their children with special needs, now they are coming out of the house and letting the world know," she added.
Mahmudul Hasan, assistant director of SWID Bangladesh, said generally, children diagnosed with Down syndrome have mild levels of autism.
"They may develop their own expertise in different professional fields and function well in workplaces if they are given vocational training and cultural support," he also said.
He recommended developing the overall curriculum and infrastructure of educational institutions, considering the needs of children with disabilities.
[*Names have been changed to protect the identity of individuals.]
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