The 10th of September, 2014 is going to be a day to remember for our family. My dad celebrated his 67th birthday. As a family, we took the decision to stay on in the Palamu region for the timing being. After I had to leave NJH, it has been one decision at a time. There were apprehensions of safety, about working in a very basic set up, about working closely with the Catholic church, about the remoteness of the region, about being close to NJH . . .
My team-members, Rachel and Satyaprakash, had a plan to visit one of the nearby villages. I told them that I will tag along. The place was a difficult one – inhabited in majority by one community. There had been quite difficulties in starting off the work. A group of disabled people and their families were in the process of joining hands to work together.
We left the main road to travel about 3 kilometers to reach the village. It was so thickly populated. It looked more like a slum than a village. Overflowing drains, cobbled streets, mangy dogs running along the streets, sickly looking half naked children playing wherever they could find some space . . . The place looked quite out of place for the rugged agrarian communities that we usually have around this place.
Most of the people on the street were quite suspicious of our arrival. We reached the designated place of the meeting. There was nobody in sight. Satyaprakash told the lady of the house to inform everybody that we’ve arrived. We then drove on further down the road to meet couple of disabled families.
We returned in 10 minutes to find the meeting place teeming with children. They all looked alright to me. Then, I saw couple of children, limp with their drooping heads resting on the shoulders of most probably their parents. There was one young man with quite badly deformed legs.
Considering that Rachel and Satyaprakash were familiar faces, I opted to stay at a distance and observe. The faces of the parents were bereft of any hope. They looked quite lost in thoughts as my colleagues told them about the need to group together, work together, about what their children can do etc etc.
The father of one of the children with the cerebral palsy had come late and could not find space inside the room where the meeting was going on. Only the mothers of the disabled children were there in the room. His wife was there with the child. So, he silently came out.
I asked him about his child. He looked quite well off for the setting. Dressed in jeans and a branded shirt with jazzy looking goggles in his shirt pocket, he looked very unlikely to be an anxious parent. But, he was an anxious father.
His child was born in a private hospital in the local town. The child had not cried at birth. He was admitted for about 3 days in the same hospital before he was referred to a tertiary centre for neonatal care. The baby was admitted in the city hospital for about a month before the parents were told that nothing can be done and maybe some exercises could help.
They took the child to many places but nobody had told them that the child would never be how they would expect him to be. And of course, nobody was there to tell them on how to do things for the maximum benefit for this child.
On asking the man about number of similar children in the village, he told that he knew personally at least 10 of them. Rachel and Satyaprakash was discussing about the same issue in the meeting. And one of the ladies called out to the man to ask the same question.
We told the group about the need to form a caregivers group for such children.
Sheron, our physiotherapist would soon be visiting this village. I hope that the parents would take this endeavour seriously.
I felt so elated after the outing . . . I was looking out for a sign . . . to move on or stay. As we journeyed back, I asked Rachel about plans for the year ahead. She told about doing the same thing for 3 more years in this region . . . till there is a change in attitude towards the disabled.
The region we serve in is quite backward when it comes to even routine clinical care. Leave alone the disabled people, it’s a challenge for the rest of the population to access basic primary care services. If it were not for people like Rachel, Satyaprakash etc. who are the members of our team, the disabled in these regions would never have known that there is hope for them.
Over the last 3 weeks since I’ve been in Barwadih, I have been exposed to blunt fact that communities that have poor, almost no access to basic healthcare are much much more than I ever thought. So, the challenge to the disabled in such settings becomes all the more large.
However, the bigger challenge would to find like-minded healthcare and social work professionals who would be ready to go the extra mile to make a difference in the lives of these special people, especially in remote areas of the country, similar to the region we serve.