We start our new column “STORIES FROM ANOTHER WORLD” with the story of Sonam, from India. With these stories we want to share with you some signs of hope from those contexts where hope seems unable to exist … to proove that a better world is possible!

Here is the story of Sonam, a 16-year-old girl with mental retardation that her family has always considered a problem, but now thanks to Navchetan she helps with the housework and helps her whole family!

Sonam Prakash is a 16-year-old mute and slightly mentally retarded girl. When she was found by our staff she was unable to perform daily personal hygiene and care tasks and was living in a state of depression due to an inability to communicate. Thanks to our program in Navchetan, she can now write his name, attends school together with her classmates and she can wash and dress independently.

She was born on 1 January 2006 to Mr Prakash and Mrs Bimla, the youngest of five children. She has three older brothers, two of whom are already married, and an older sister. She was born at home in Jawhar Nagar slum through a normal delivery with the help of a midwife. However, once born, the baby did not cry and she was born with an amniotic sac. The mother suffered from hemorrhaging for three months after giving birth and had been very weak and anemic since pregnancy. Sonam was kept in an incubator for a week and doctors diagnosed that her brain nerves were swollen and therefore abnormal. At the age of three she then fell from the terrace, suffering a head and spine injury. Sonam is mute but physically healthy and can hear.

Due to the conditions of poverty and ignorance of the family, no one has ever considered providing for the child’s mental and psychological health. She was not bathed regularly or even dressed properly. Their house was very small and there was no privacy, so she didn’t seem to have the slightest sense of shame. For these reasons she was also sexually abused as a child and was very depressed as she was unable to communicate with anyone.

Sonam was identified by Navchetan staff and registered in the project in May 2019. Although she had two parents, an older sister and two stepsisters at home, no one ever took care of her hygiene. So the goal of Navchetan staff was to make her able to take care of her personal hygiene through teaching daily activities (ADL). She was given a bar of soap, a towel and a couple of clothes to wash and dress. At first the sisters stayed with her to show her how to clean herself, then they taught her how to wash her clothes and let them dry in the sun. They then slowly taught her how to brush her hair, brush her teeth and get dressed.

The staff then assisted the family in preparing the necessary documents to obtain the certificate of disability and the state pension of Rs 750. Per month. In 2021, she was admitted to the state school in Mukesh Nagar. She is now in class 4, despite not being able to read and write. She obtained the scholarship from the school itself as well as being part of the food distributions organized on special occasions.

After a two-year hiatus due to the coronavirus, when the CBR center restarted, we set a vocational training objective for all adolescents. She was not interested in sewing clothes or in any craft business. Since her family is engaged in house cleaning work, we have tried to teach her household chores like cutting vegetables, washing dishes, sweeping floors, preparing food, serving it on the table etc. She was also taught to write her name.

She loves music and dance, every day she takes part in dances with the younger children to have fun. Today we find an autonomous Sonam, matured, who is able to keep herself clean by herself and to carry out all the domestic activities in the best possible way. She was also given the opportunity to participate in plays and ballets. She likes to wear make-up and dress up for special occasions. She loves coming to the centre, which is an opportunity for her to learn new activities to do independently, as well as having a lot of fun.

We thank all those who have contributed to making this possible, without your help Sonam would still be locked up in her house depressed and with no prospects, but now she is a lively girl whose future is opening up ahead! Thank you!

To celebrate the international day against violence on women we want to share with Urmila’s story, a story of strength and empowerment, a big example of women’s emancipation, coming from a slum in Jaipur where she works with our Navchetan’s children with disabilities.

We met Urmila in 2019 as she came for an interview for a Community Based Rehabilitator at our Navchetan program in Jaipur, India.

TOO CONSERVATIVE FAMILY 

Urmila had 2 children less than 5 years old and she lived with them in the slum of Jawahar Nagar, close to her husband’s family. Her husband’s family is very conservative and they didn’t allowed her to go out from the slum, neither to work … “such a bad mom, who would look after the children then?”, these where some of the comments they made to her when she shared her thoughts.

THE COURAGE OF A CHOICE

One day, in June 2019, she got the courage and went secretly to the interview, our staff met her and she confessed that honestly she had never worked and she never had met a person with disability before. For these reasons other people have been selected for this job, but those people then showed they had some prejudices related to people with disabilities, considering them of an inferior caste (unfortunately in India, especially in slums, there still are some division in castes). In september 2019 Urmila got a call from Lavina, our coordinator, who proposed her to go for a trial. Urmila was very excited about, but at the same time very worried for 2 main reasons: she didn’t know if she was going to be able to approach people with disabilities and, the most worrying, was the chance to be discovered by her husband’s family … she would have had to work with families from her slum, it’s a big slum, that’s true, but people are talking and they would have known eventually…

THE BEGINNING OF A NEW ADVENTURE

In that way the new adventure of Urmila with Navchetan began. She was a bit worried but also enthusiastic about this new challenge for her. She started to go around with our staff visiting families of children with disabilities in the slum and immediately it was evident how loving and caring she was with them, without any prejudice. She got immediately employed and supported for the first few months in order to train her about disability and to show her how to support families in defending their rights, even accompanying them in different offices or hospitals in the city.

The first she has been in hospitals or at the big center of Mahaveer she was terrified thinking that she should later bring families there and support them in these chaotic places, but then, step by step, she got confident and she became the referent for families, slowly they started to address always to her for everything related to disability and she felt recognized and valued in her work.

PROBLEMS WITH THE HUSBAND AND HIS FAMILY 

What she was fearing then finally happened, her husband’s family discovered that she started to work. Her husband got furious and they had really scary fights, relatives couldn’t stand the shame of having a “working mom” among them. Nevertheless Urmila, after starting to work for defending children’s rights, had understood that she also had rights, and she discovered she wanted to fight to see her own rights recognized, too.

Consequently she kept on working for Navchetan, in spite of her family’s disapproval and the fights with her husband, they had several tense periods and her marriage was really at risk. Anyway Urmila was convinced and she even told to her husband that she would have chosen her work instead of him, because she felt more at home in Navchetan than with her relatives.

URMILA’S ACHIEVEMENT

Step by step Urmila started to earn money and she managed to send her children to a good school, and when they were at school she didn’t feel guilty to be at work. Thanks to her salary she managed to even finish her studies and to get a degree. She’s now coordinating some families’ meeting for Navchetan and for this reason people recognize her and are thanking her when she walks around in the slum.

Seeing how she is respected among the slum also her family started to accept her work and to respect her, admitting that she made the right choice and that she became a precious resource not only for the family but also for the community.

Such a strong story and witnessing from Urmila for every women around the world who is fighting for her rights!

Thanks to the collaboration with the Anganwadi centers in slums we are able to grant a better future to the children with disabilities supported by our Navchetan program, in Jaipur, India.

Anganwadi centers were started by Indian government in 1975 in order to fight child mortality and malnutrition. Anganwadi means “courtyard shelter”, and they are real centers were mothers and future mothers can find a shelter. They were initially settled for rural context but during the years they spread also in urban over-crowded contexts, such as slums. Governmental plan foresees 1 every 1000 people.

Our Navchetan center is collaborating with Anganwadi centers in slums and their service is surprising.

We visited in July an Anganwadi center in Jawahar Nagar slum, in Jaipur, from where almost all our children are coming. In this center there are 4 operators: a teacher, 2 assistants and a caregiver. Apart from them there is an ASHA worker (Accredited Social Health Activitis) linked to the center, he is a community health operator  who provides health education, through vaccinations and prevention.

Operators are organizing in the center a small kindergarten where every morning working moms from the slum could bring their children, until 14 o’ clock. There are 30 kids attending the center, 22 more than 3 years old and 8 younger.

There is also a program of assistance for pregnant women which supports nutrition in pregnancy period and until 15 days after the delivery, both for moms and babies. In this program moms are coming every day at the center for the distribution of food items and for awareness on health matters and prevention.

In order to prevent complication due to the low hygienic condition of home-deliveries, the governmental program foresees a contribution of 1000 indian rupees for every mother delivering in hospitals. Moreover, in case of female newborn, the program foresees 15.000 rupees which will be frozen in an account until the 18^th birthday of the girl, generally used for organizing marriages. In this way they are restricting marriage’s age and limiting child marriages.

Sunita, the teacher director of the center, is an hardworking woman who is every day at the center, even out of her working hours, trying to help in any possible way slum’s people. For this reason she started to collaborate with our center, and give orientation to some parents of children with evident problems in developing and suggest them to address to us.

The collaboration with all Anganwadi centers is very precious to us because it allows us to have special antennas on the territory in case of new cases arising, besides of being an essential partner for our awareness campaign about prevention and rights of the people with disabilities.

Thank to these collaborations we can hope to really improve children’s life and to creat for them a better future.

A big thank to Sunita for her tireless work and to all centers we are collaborating with!

Aarti works with children with disabilities in our Navchetan center, in a slum in Jaipur, in India. She chose this job because, as she said, it allows her to be at the service of the neediest people. We report here her interview as she explains all miracles she was witness to.

Aarti is one of our Community Based Rehabilitators, she works in Jawahar Nagar slum, where she lives, at the service of families with a child with disability. She started working in Navchetan in 2019 and since then she helped more than 50 families to fight for their rights, getting certificates and obtaining pensions and other aids. She also leads a class of special education for children in primary age who attend our center. She still was a teenager when she started to work with us, 19 years old, and now she is a determined woman who also entered the school for special education that she will attend thanks to her own salary. She decided to study more in order to make her job more effective.

Here her witnessing:

“My name is Aarti, I am 23 years old and I met Navchetan when I was only 19, in June 2019. My sister told me about a new job opportunity and I registered for an interview. When sr Divya told me about the center and the kind of work they were proposing I immediately thought that it was not only a job opportunity but a real chance to serve the most fragile people: children with disability.

Before my arrival other 2 people got recruited, but they left in less than a month because they couldn’t handle this kind of children. I immediately asked why and so sisters answered me that I would be needed to do anything: cleaning them, bringing them and to meet any need they have. Therefore they asked me if I was feeling to start this job or not, I accepted the job saying that I was ready for everything.

I got immediately inspired by the work and commitment of sisters towards children. During these years I really saw concrete miracles. For example Sachin and Naman at the beginning couldn’t even grab food, now they eat autonomously and eat with a spoon or drink with a glass, Sachin even started to walk recently!

When I go to visit families at home I always tell them about all children achievements and progress in order to make them motivated and get their interest in involving children in our program, helping them make improvements in their life.

I regularly visit all children families and they are all enthusiastic of progresses their children have achieved during these years. I support families in order to get disability’s certificate and obtain in this way public aids, I am really proud of my work because now all people in the slum respect me.

At the beginning I was a bit afraid but sisters helped me and slowly showed me how to do everything, in few months I became autonomous in my work. Now almost all children got a certificate, some of them were not even registered at birth! It was as if they didn’t even exist for the government, now they are receiving a pension!

We meet some difficulties, of course, especially for the distance from the slum to the center, so some parents get worried sending their children, but most of them send them anyway because they can see how it is acting good on them.

Most troubled situations are when in one family there is one or both parents with some disability, often mental, and so it becomes hard to work effectively with their children.

I am very happy about this job because I was witness of real miracles and see children’s progresses thorough the years. Before working for Navchetan I never went out from the slum, I was always at home being afraid of going out, now I go everywhere in the city and I am confident in my work and support families going in hospitals, public offices and so on.

Coming to the center I also discovered what is special education and I got admitted to the school of special education in Jaipur. So I will become more competent and more effective in doing my work helping those children more and more.”

We only can thank Aarti and consider that we are very lucky for having found such a precious resource inside the slum, a person ready to be at the service of most fragile people.

Sachin lives in Jawahar Nagar slum and when we found him in 2019 he couldn’t even sit alone or grab objects, thanks to our Navchetan program he can now walk on his own and he has a lot of new friends!

Sachin was born as the firstborn child of Mr.Kishan and Suguna devi on 22.05.2014. They live in Jawahar Nagar Slum. The birth of Sachin was through a normal delivery at a hospital. His mother had aborted the first child and for Sachin she did not have pain so she was injected to get contractions and deliver. But when the child was born there was no birth cry for about two hours. So he was shifted to the pediatric hospital for three days. After that he was given breast feeding for three years. At the age of 2 years his parents realized that the child was not achieving the natural developmental milestones. So they took him to goddesses after goddesses to do worship and superstitious practices. But nothing worked out. They then took him to hospital and began treatment. But even after six months since there was no improvement they gave it up. They believed that someone has done sorcery to the child.

Sachin was found through the survey and was registered at Navchetan on 16.10.2019.  At that time Sachin was not even able to sit balancing himself. He was diagnosed as Ceribral palsy case with Spastic type. He used to fall and hurt his head often. Therefore he developed walking on knees.

He was given physiotherapy to concentrate and to balance. His parents were not so serious to do the exercises at home. He also was very playful and not interested in doing physiotherapy. But he was regular to the center. Last year he was trying to hold and walk but was falling down very often so a helmet was given to him to wear so that he does not hurt his head.  During the first year his mother had to carry and bring him to the center. But now he is able to walk holding the hands of another person. He was not able to do anything by himself including consuming food and water.

After three years continuous efforts and the new methods of the present Physiotherapist, this year he began to balance himself on his own. He was given KFO to wear at home and another to use at the centre.

He was given lot of attention and encouragement to walk on his own. He was also taken to the neurologist, who gave him tablets to energize and relax muscles and to improve the general health. Thus after great amount of PT and moral support he began to balance himself with his physiotherapist walking behind him.

It was a day of great joy for him and for all of us. He wanted the physiotherapist to go home and make his parents to see that he is walking. But the problem was his father goes for work and come back only at night.  Anyway we accompanied him home and showed his mother and aunt that he is able to walk. They were also very happy. Since at home he is not careful to wear the KFO and few days of holidays he again lost his balance. But now once again he began to make improvement and is trying to walk.

At present Sachin is a hero who is able to eat his food drink his water, dress and undress, comb and make up, toileting and cleaning, opening peanuts, peeling onions, cooked potatos, writing and reading alphabets and two letter words. Numeric he knows up to 50 to write and say. Adding is easy for him compared to deductions. He can communicate but he has got a thick tongue so clarity is less.

He is a jolly boy, loves to be in the park play a lot outdoor, enjoy friends and sing songs and love to dance. He is very choosy with food but enjoys fast food. Now he is able to walk slowly if he knows that someone is there at his back, because his anti-gravity muscles does not work and  the calf muscles are spastic therefore he is prone to walk on tow and his heals does not touch the ground.

So this is our Sachin. He loves his name because of the great Cricket player- Sachin Tendulker, and he too loves to play cricket but the bat he is unable to hold tight. He keeps talking and entertaining although during Physiotherapy and even in the vehicle while going and coming. 

Thanks to our Physiotherapist Dr.Lavina who takes a lot of effort to see that the children benefit the maximum from the program.

Thanks especially to all those who are supporting our program, you are our strength and it’s because of you that we can be witnesses opf all these miracles!

Here we share a short video of his great achievement, so thrilling!