When Junagadh-based Neelam Parmar was born with a severe disability that left 80% of her body paralysed, she and her family found themselves on the fringes of society. Even her relatives would chime in with unwarranted taunts, and her school discriminated against her, while children her age mocked her.
But despite a rough childhood and such bitter experiences, Neelam says she did not blame anyone. Instead, she wanted to use her experiences to educate those around her and make a difference.
So in 2012, she started her own NGO, Santvan Viklang Vikas Mandal, with help from her father and sister Rekha to provide a safe environment for children and adults with disabilities, aged between nine months and 51 years.
The NGO takes care of all their needs, from food to care, basic education and accomodation. Neelam and Rekha use their personal savings and donations from people to meet the daily expenses.
“Sensitisation and basic knowledge with regards to disability was lacking when I was growing up. Of course, now people can educate themselves thanks to the internet, but there is still a lot that needs to be done. The NGO is my tiny contribution for those who deserve all the care and love in the world. More importantly, here we strive to keep people’s self-confidence and self-esteem intact,” Neelam tells The Better India.
Neelam notes that dealing with 40 children and adults who have suffered mentally and emotionally can be hard, and requires immense patience. Additionally, parents of these children were hesitant to enroll their children in the programme when they first saw that Neelam could not walk.
She shares what kept her strong and motivated through all such challenges.
Developing trust and a bond
It was a medical trip to Rajasthan in 2009 that inspired the two sisters to start an NGO, Neelam says.
“We had lived there for more than a year as Neelam didi had to undergo multiple operations. We spent most of our time in the hospital, where we saw others going through similar pain. We even started helping the patients by doing small things like getting water or arranging a chair. While doing this, both of us realised that our passion lay in serving others,” says Rekha, who has done her masters in social work.
However, understanding the needs of children who cannot express themselves was a long process.
The NGO houses girls with cerebral palsy, down syndrome, autism and other intellectual and orthopedic disabilities. In a majority of these cases, they were abandoned by their parents in a hospital. One girl was found at a railway station and another came through the police. In some cases, the kids either had single parents or parents with intellectual disabilities.
The NGO, which is often approached by other organisations, admits people as per severity of case or disability.
“Sometimes we turn away the children to the NGO that approaches us if they are extremely hyperactive or cannot express at all. But for some, we are ready to bend the rules. Just five months ago, we received a four-month-old baby with down syndrome from Jabalpur. Her mother had died and after the father learnt about the disorder, he abandoned her. This broke our heart and we decided to keep her here for life,” says Neelam.
The sister duo are very particular about maintaining a daily routine that helps the girls remain physically and mentally fit. The regime includes baths, three meals a day, mental and physio therapies, craft-based activities, television time, and dance sessions, and the girls are given utmost care and attention. They are also taken to hospitals for regular checkups.
Rekha says that while developing trust and a bond with each inmate is the most difficult part, it is also the most rewarding. “We observe their patterns and behaviours to figure out their needs, like hunger, thirst, pain, etc. In the beginning, they didn’t even allow us to touch them. We have to start by holding pinky fingers or by giving handkerchiefs that both of us hold from each end. Neelam and I take turns to stay awake at night.”
Neelam says that financial challenges have worsened due to the pandemic. Apart from paying the salaries of 15 staff members, the sisters have to spend on procuring diapers, food, medical procedures, medicines, etc. Every month, the expenses touch Rs 4,00,000.
The NGO is in need of donations. You can get in touch with them here.
Edited by Divya Sethu