The Perils of being special

Capstone Health Taluk

“The world isn’t built with a ramp.”
― Walt Balenovich 

Disability is not a disease but a state of condition. Despite this, being disabled is still a stigma in our society.

Kushtagi is a taluk in North Karnataka which consists of 177 villages and one town. It has a population of nearly 2,85,000. Five to six percent of children from each village in Kushtagi are affected by some kind of disability.

Top 10 States- Percentage of disabled children in each state to the total disabled children, Census-2011

Maulabi,  a seven-year-old from Bijkal village in  Kushtagi, would’ve loved to play with her school friends and the kids in her neighborhood. She waits at her doorstep each afternoon and stares at the kids playing around. With a heavy heart, she looks at her thin legs that hold her back. She wishes to run alongside them someday.

“The problem is that she has no strength to get up or walk. We didn’t know it earlier but when she came of the age to stand, she couldn’t. When she grew up, the symptoms started showing. The treatment has been given to her until the age of four. We used to spend it from our pocket, which used to come up to Rs 1000 a month. Since there has been no change after the treatment, we stopped giving her the treatment. We could not go to any bigger hospitals, because we cannot afford. The doctors in Hubli had advised us to take her to Bangalore for an operation. The operation will cost Rs.5-6lakhs. I carry her to school. The vehicle which we have been given, doesn’t work on these roads, so it’s easier for us to carry her.” said Maulabi’s mother.

A good chunk of families in Kushtagi live below the poverty line, whose monthly income ranges between five to eight thousand. Most of the disabled children are living a life without proper medication, treatment, education, and a proper healthy lifestyle.  The families with a disabled child in their house need the same amount for the treatment and medication.

Maulabi is one of them.  Her education is also being affected as she can hardly move by herself and needs to be carried.  Her father, an auto driver, and mother a laborer leave for work early in the morning. She goes to school only when they have time to carry her. Therefore, she doesn’t attend school regularly. Maulabi, who studies in class three hardly knows how to write alphabets in Kannada.

Jyothi S., a teacher in Bijakal Tekkalaki School says, “We have 130 children in our school, out of which eight kids are there with different deformities. We are not specially trained to teach them and neither do we have any special instruments. “

Among 177 villages, Taluk Kushtagi has no special school for disabled children, which causes the children to be deprived of even a basic education.

According to the schemes of the Department of Welfare of Disabled, in Karnataka, four lakh persons with disabilities are getting Rs.400 monthly maintenance allowance and Rs. 1000/- for those who have disabilities more than 75%.

Hanumantha, an eight-year-old who also goes to the same school as Maulabi, is affected by epilepsy and mental disorder.

“He is born like this and he can’t speak. He can’t sit in one place and keeps running around all the time. At least one person has to be at home all the time to watch over him. We don’t let him go out because of running vehicles are there on the street and he doesn’t know what to do.

We have taken a loan of around Rs.40/50k. His father has spent a lot on the child’s treatment. We don’t even have a tab on how much we have spent. Before the medications were free near Koppal, now we have to take him to Hospete for his treatment. And there are many medicines that we have to buy,” said Hanumantha’s grandmother.

“Sometimes he just faints and falls on the road and people inform us to go and pick him up. They put him in the corner and after an hour or 30mins he gains his consciousness,” she added.

Among 1771 villages in Kushtagi, there are only 9 PHCs and 1 CHC. “Apart from Epilepsy we don’t have any special facilities or machinery for the disabled persons,” says Dr. Meti Patil, BDS doctor from Dhotiyal PHC.

But another problem Is we don’t have any specialists here, therefore they need to go to the District Hospital or sometimes to big cities for further treatment. Even for any test, they need to go the Taluk or District hospitals.”-says, Aanand Gotur, the Taluk Health Officer of Kushtagi Taluk.

“To improve their condition and bring them to a lead a normal life, the families themselves have to come together, support and accept the child’s disability and find a solution. Most of the villages don’t even know about the different campaigns launched by the governments,” said M.V. Ranganath, the Senior Programme Officer at ADD India[Action on Disability and Development India]

Though the government has allotted 3 percent of the sectoral budget for the disabled, each Panchayat gives necessary instruments like hearing aids, wheelchairs, etc to the needy disabled persons out of that budget. Apart from that,  a new scheme named Ayushman Bharat has been launched in October for the health and treatment expenses for those who cannot afford it.  However, the rural areas seem to not be aware of it. Hence, one could say that there has been no change in those afflicted lives of the disabled in Kushtagi taluk.

 

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