Giving birth to a defective child invites social stigma. Sadly, both parents and their child become victims of a villainous society. If we can’t care for our children, no matter their status or plight, we are doomed, Syed Asma reports.
Hameeda Begum is living with a stigma for the last two decades. When she gave birth to Hadiya, her elder daughter, she was not aware that her life was going to take a turn for worse. The couple had raised Hadiya as a normal child; that was till they discovered that Hadiya was not able to walk properly. They consulted a doctor who, after running some tests, diagnosed that Hadiya was suffering from Down’s syndrome, a rare chromosomal disorder in which extra genetic material affects the physical and mental growth of a child.
When Hameeda’s in-laws got to know that an abnormal girl was born in the family, they stopped visiting her and refused to take her back. Her obdurate husband stooped before the will of his parents and Hameeda was forced to live with her parents, a curse which she had to carry for two painful years. Seeing the plight of Hameeda, her parents consulted the village elders who convinced her in-laws to take her home.
“They did not realize that it was not in my hands. I have suffered for something I was not guilty,” she says. “My mother-in-law started torturing me. She used to curse Hadiya all the time. Once, on a chilly winter night, she forcibly threw us out of the house. For a long time, we were sitting in the backyard. When I realized that Hadiya was getting cold, I pleaded a neighbor to allow us in.”
When her husband got to know about it, they decided to buy a separate house. Some years passed and Hameeda, a resident of Taarhama, became pregnant again. She had expected a boy. The wish was granted and Salim was born. For a few weeks, he acted like a normal child. But his delayed speech and disturbed movement of eyes made Hameeda suspicious and they consulted a doctor who diagnosed that Salim, like his sister Hadiya, was suffering from Down’s syndrome.
Hameeda was shattered. Add to that, the society didn’t let her rejoice her motherhood. “For some time, I felt bad. I even cursed myself for giving birth to them. But then I realized that it was my fate, something that could not be changed. I lived with it.” The couple then decided not to have a third child.
Hameeda and her family are now living in isolation. Their relatives avoid visiting them and they are not invited to social gatherings. “Even my brothers and sisters do not contact us now. They don’t have any love or affection for my children. So what if my children are not normal. I can’t disown them,” says Hameeda, “I love them more than my life. For these two souls, I have disowned the world. I do not regret that.”
Hameeda’s is not the only case. There are hundreds of families in Kashmir who have a similar story. Recently, a girl child born with a cleft lip was abandoned by her parents at a Srinagar hospital. No one knows who her parents were and the society became mere spectators. It was the state government that came to her rescue. In most patriarchal societies, giving birth to an impaired child carries a social stigma whose consequences are borne by both the mother and her child. If the families support them, the society plays a villain. The societal acceptability of these children is very less. Parents rarely take them to social gatherings; schools don’t grant them admissions, while the children of their age and even adults tease them.
According to 2001 census, the J&K state has a total disabled population of 302,670 (272,816 males and 130,853 females). According to estimates, this number has increased to 605,340 (343,632 males and 261,708 females) in 2009. While the national average of disabled person is 2.12 percent, in J&K, the figures stand at 3.0 percent. Bashir A Dabla, a noted sociologist, says the cases of mental and movement disability are more in number than other disabilities in Kashmir. According to a study, one out of every 6-7 Kashmiri is facing one or the other psychological problems in recent years. Prof. Dabla attributes the spurt in numbers to the conflict that broke out in Kashmir in early 90’s.
Shabir Ahmed, a private salesman, was visually impaired in 2010 summer unrest. He was hit by a marble stone in his eye when he was visiting her aunt’s home to see if she had the food stock, “Their area was under curfew for weeks. When he went there, protests broke out and he was hit in his eye,” says Salima Begum, his mother, who also takes care of her 15-year-old mentally retarded grandson, Abid Kawa. After undergoing numerous surgeries, Shabir has barely managed to see. The family has little hope of making their ends meet now.
This was not the beginning of hopelessness for Shabir’s family. His nephew, Abid was abandoned by her mother when she got to know about her son’s disability when he was barely six months old. Without any care, she left her in-laws’ family and Abid’s responsibility fell on the shoulders of his father and grandmother. As fate would have it, his father, a militant, was killed. The family didn’t have any source of income which delayed Abid’s treatment and his conditions worsened. Now, he is stayed put at home, sometimes tied by ropes, since he has tried to run away. The family had admitted him to a local school but his repulsive behavior and abusive language forced the school administration to expel him. Even his relatives don’t allow Abid to enter their houses. “They even tease him and sometimes beat him,” says Salima.
But things have now changed for good. A university student identified Abid’s case during a field trip and referred him to a school ‘Chotay Taray’ in Rajbagh, Srinagar which is meant for physically and mentally challenged children. The school has the staff strength of 11 special trainers and other managerial staff. It was established in 2004 by Arjamand Makdoomi who quit his government job to work for a larger good. He had met a Netherland based nurse for special children, G Koster, who suggested him to open the school. “She asked me whether there was any school for such children. I didn’t had any answer. Then I realized that such children were in good numbers in our society!” says Arjamand.
“Initially, we literally had to go from door to door to motivate the parents that their children can have a normal life”, says Arjamand, who is the president of Chota Taray Foundation which runs the school. “Most of these children in Kashmir are made to beg on roads, even by their parents. We found many in that situation.”
The school has 54 differently-abled children on its rolls. Besides, the administration takes care of 88 children at their homes in Srinagar and Budgam. Thanks to Chotay Taray, Abid is now attending school, wears uniform, talks in Urdu and can even identify alphabets. Unlike Hameeda, Salima found an opportunity to improve Abid’s life. In Kashmir, the differently-abled children are rarely allowed to be part of a normal school. There are only a couple of special schools which entertain such children. Chota Taray has changed the lives of many special children. Aaliya, an 11-year-old girl is a victim of Cerebral Palsy (CP) that causes physical disabilities in human development, chiefly in various areas of body required for movement. Aaliya started walking when she was seven and is now learning English alphabets. Her parents are making every effort to enhance the improvement in Aaliya’s health. Unlike Salima, they approached Chotay Taray on their own. “We can see a lot of improvement in her. Initially she could not stand on her own. She could not remember things properly. But today, we are seeing a different Aaliya,” says Saima, a special instructor at Chotay Taray.
Rajput’s is another success story of Chotay Taray. Born in a family with a history of producing mentally retarded children, Rajput was the third fateful child in five siblings and the youngest. After he was sent to Chotay Taray, he has shown significant improvement in his behavior. “He is showing a lot of improvement. We can now send him to market to purchase things. He behaves relatively normal now. Otherwise, he used to run from home. Once we found him after two days after he ran away. He was in roaming in Babademb,” says Ruhi Jan, Rajput’s elder sister, who is presently taking take of all her mentally challenged siblings. They lost their father to cancer in 2000.
But no matter how much improvement these children show in their behavior, they are always dependent on their parents or caretakers for support. This dependence has created hurdles in Roohi’s search for a job to support her family. Carrying the stigma of having three mentally challenged siblings, she found it difficult to find a suitable match. Now when she is getting married next year, she doesn’t want to leave her three siblings alone with their mother. “Their condition worries me a lot which can get dangerous sometimes. They get fits when they are not well. What will mother do then?” says Roohi. The family has decided to shift them to their uncle’s house. But not many children have that advantage. Unless the society changes its attitude towards the plight of such children and shuns its biases, there is very little that can be achieved to improve their lives. Sheer apathy won’t serve that purpose.
(Some names have been changed in the story)