HYDERABAD: When six-year-old Preeti clutches her stomach while lying on the floor and wails ‘pappu’, her mother Lakshmi has to rush to calm her down. Her father, though tries his best, is not of much help. Preeti, who has cerebral palsy, responds only to her mother.
“When she was born, family members talked about how she is mad and there is no scope for her. Her locomotor disability didn’t allow her to walk for many years.
There is not a single hospital we did not visit,” recalls Lakshmi. Her condition was detected early enabling Lakshmi to seek required help. Preeti can now walk and can also communicate her basic needs.
But all are not equally fortunate. Take the case of 13-year-old Renuka, who also lives with the same condition. Her mother Vijaya says in a hopeless tone: “She is always clinging on to me. She has difficulty understanding and communicating,” says Vijaya.
Both Lakshmi and Vijaya are primary care takers for their children. And life is not that easy for these mothers.
It all starts from home, says Lakshmi, who had to face discrimination from family members who blamed her for Preeti’s disability. This is the situation of any mother of a child with disability, points out Hari Babu Gajendra, director of Community Advocates for Disability Rights and Education (CADRE), who has worked with parents of Children with Disabilities (CWDs) for 15 years now.
“The men are never blamed. The family calls it the mother’s fault and they are also have to perform household duties while taking care of the child, which is a huge challenge. Child care often gets neglected,” Gajendra says.
“I have a bus pass called the escort pass. I also get a pension of `1,500. I save up `1,000 and `500 are used for her expenses,” says Lakshmi. However, the pass is valid only when escort is travelling along with CWD. Vijaya, who has to accompany her child to school 2 km from her home, can use the pass only twice.
While mothers struggle as much as or even more than the CWDs, there is nothing in place to ease their job.
Shyamala, field coordinator under Enlight, a project by Aide et Action in association with Capgemini and Commitments Trust says, “Parents are unaware of provisions available for children, which can ease the burden to some extent. Most women only pray that their children can use washroom on their own.”