Despite the rising global interest in disability, governments, organisations and institutions around the world struggle to meet the needs of people with disabilities, particularly vulnerable children. It is known that children with disabilities are more likely to face abuse, discrimination and restricted access to social services, health care provision and education. Parents and carers often find that they have deprived themselves of their own basic personal needs, such as an adequate night’s sleep or proper nutrition or shelter in order to provide for their disabled child. The parents and carers with a strong emotional bond and sense of commitment also find their relationships and friendships are harder to maintain. Being aware of their difficulties raises the recurring question, ‘How do families do it, how do they survive?’
For very poor families having a disabled child can be a tragic event. Often loving that child, although important, is not enough to sustain life. The capacity for nurture, care and protection while they are growing is dependent on the resources available to families. A special kind of nurture is necessary for life itself, especially for street children with disabilities. That special additional nurture is provided by good people.
There is a well-known saying, “Wherever you see tragedy, you see bravery too. Wherever you see ordinary people in need, you see extraordinary people coming to their aid.” In Jyoti’s story prominence is given to the good ordinary people coming to her aid.
Finding Jyoti and her family was not easy and this is where Anna, my daughter, played a key role. Like many people on the autism spectrum, she has difficulty processing everyday sensory information. Any of her senses may be over- or under-sensitive, or both, at different times. We had visited India previously and she had experienced sensory overload and suffered major meltdowns. Anna was aware of this but she badly wanted to help in any way she could. Anna is hyper-visual. She ‘sees’ people with disability when Kaushik (our guide) and I miss them and this heightened sense was invaluable to us.
Meeting families who were willing to tell us their stories meant walking or driving around communities living on the fringes. Late one afternoon we were driving along the banks of the Hooghly River, an arm of the Ganges, in an old yellow taxi. Anna said quietly “I think we just passed a blind girl.” Knowing her special observational abilities we stopped and walked back. There we saw Jyoti, a one year old blind girl, being cuddled by her mother and only just visible.
“Is it OK to talk to you?” we asked. Jyoti’s mother, shy but friendly, smiled and said “Yes”. A woman, who we later found is her sister-in-law, came across the road to join us. It quickly became clear that she was the primary ‘gatekeeper’ and guardian of the family and the person who kept them safe. We explained the aims of the Different Lives project. After answering a few probing questions the guardian nodded her approval they family began to relax. “The name Jyoti”, her mother explained, “means ‘Light of life’.” The guardian (Jyoti’s mother’s sister-in-law) showed great affection for little Jyoti and went on to explain, “She’s only one year old and was born blind. Jyoti is special to us and the light of our life. We’ve taken her to numerous hospitals and they all say ‘come back when she’s five, we can’t do anything for her now’.”
Usually I only bring out my camera after I feel I have a family’s confidence and they understand I mean them no harm. Jyoti’s mother was shy but clearly pleased that we were taking an interest in her child. She pointed at my camera and whispered “Would you like to take a photograph?” I took a couple of shots and showed them to her and then the others. Of course, after that, the whole family wanted their photos taken and so I organised them into groups for the obligatory family snap. Each time I visited Jyoti I took her photograph which really pleased Jyoti’s mother. Perhaps it was simply that we took an interest in her child that was important. I gained the impression that the family believed that act of photographing Jyoti would somehow help her.
The family were very concerned about Jyoti’s development. Her mother explained that “Jyoti’s disability has slowed her development.” The guardian went on “She was late to walk. A baby walker would help her and give her confidence to walk. She does make child-like sounds but has no speech. Her hearing is good. Jyoti likes playing with small plastic objects and will show her unhappiness if they are taken away.” In the future she will need special education. There are schools for blind children but places are not easy to find. Access will be through a maze of bureaucracy which the family and guardian are ill-prepared to navigate.
The family are desperately poor. They all live under a makeshift plastic tent held together with poles and string, which is hot in summer and sometimes disappears under water during the monsoon period. Nearby there is the Hooghly River where people come to wash themselves and do their washing, and were where cremations take place. Behind the home is a wall which separates them from the railway line. Jyoti’s mother takes care of the children, cooks, cleans, and undertakes small tasks for others. Her husband is unemployed. They receive no support from the Government and there is no-one to help them apply for support. Jyoti’s essential primary sources of support, material and emotional, comes from her mother and her guardian. Without her guardian life would be very hard and perhaps her survival would be in question. The guardian is strong, wise, resilient, and formidable. She is able to keep the family safe and provide them with sustenance that is essential for life.
We were hoping to see an improvement in Jyoti’s development which everyone recognised was slow. We were disappointed. On returning in November it was clear that progress had not been made. She was not well. The family encouraged Jyoti to eat and drink but she was unhappy and morose. An elderly neighbour played a swinging game and she giggled with delight then settled into the comfort and safety of her arms.
Her right eye appearing more swollen and darker than six months ago and the right eye is oozing. Jyoti and her mother attended a free eye clinic and further tests in April 2016 run by the Hope Foundation Hospital. We rang the Hospital and they agreed to look at her again. After four days in Hope Hospital Jyoti and her mother looked happy and refreshed.
The doctors concluded:
“There is no proper development of her eyes, so she will not be able to see, but she can talk, she can hear. Father has no job, mother is house wife and they have three children, all are depending on her Aunty. The child is now a special need child and she needs lot of attention and care for her better future. Ideally this child should be admitted in a Blind School for her special education & walking. The family is very poor so they cannot be able to bear the educational expenses for her future. This child needs a sponsorship for her better future.”
When Jyoti and her mother returned home we held an impromptu party. Anna, like most people on the autistic spectrum, finds interacting with groups of people difficult but she wanted to say ‘goodbye’ before we headed home. Anna relaxed and even let auntie paint her fingernails.
After we returned home we heard that Council bulldozers had flattened Bijay and Anita’s home and that Jyoti’s home was next. Where would they go . . . how would they survive? Anna posted her worries on the internet to anyone who would listen:
“I have just heard from my friend in Kolkata. Some really sad news.
All their homes made of plastic and wood poles have been destroyed by government workers last week. They are in hiding. My disabled friends will be sleeping rough maybe without pots and pans. I hope everyone is ok. Especially Jyoti.”
Anna plans to go back to Kolkata to find Jyoti and her family. She knows they need support in the future and is intending to raise money to provide for their future needs.
Update: May 2018
The Hope Hospital helped Jyoti and her mother recover from illness and exhaustion when we saw the family last, in November 2017. Hope Hospital later arranged for their ambulance, equipped with basic medicine, a doctor and a nurse, to visit Jyoti and her family at their home close to the railway track slums where Bijay and Anita also lived. We felt positive about Hope supporting the area where so many disabled and vulnerable people lived.
We were aware that life for little Jyoti is never going to be easy. It would take many twists and turns we thought but we never anticipated what happened next. The family noticed a lump on her right forehead in January and took her to the main public hospital. The doctors showed little interest in identifying the obvious growing problem, passed her around the various departments and saying, ‘Sorry we can’t help you.’ Eventually she had an MRI scan and a large tumour on her brain was identified. ‘It’s too dangerous to operate’ doctors claimed, suggesting trying powerful and expensive drugs instead. Auntie had to borrow the money since there was no alternative and we helped her with some of the cost. It doesn’t look good for Jyoti and we can only hope that the drugs reduce the swelling. It may be that an operation will be her only hope but finding someone to perform such a delicate task for a blind 2 year old slum dweller may well prove impossible. We are all upset, especially Anna.
Update: June 2019
Between May 2017 and May 2018 Jyoti’s life was turned upside down. Her family’s home (a wooden box with plastic sheets over it) had been destroyed by police and she had developed a large brain tumour. Fortunately, they were able to rebuild their home, and with the help of Kaushik, Jyoti was provided with expensive drugs to keep her alive. Anna returned to the UK and set about raising £522 to pay for more drugs by giving talks and through JustGiving crowdfunding. Everyone was moved by this brave little girl’s plight. Slowly the powerful drugs appeared to be working and by November 2018 we were all hopeful that the tumour would recede. In January 2019 we heard from Kaushik that Jyoti had a new baby brother. When Anna arrived in India in May 2019 Jyoti was a different person, having gained weight and lost the bulging bruised face. The tumour on her brain had diminished, possibly gone, and this made surgery a possibility in the future if it returned. This is more than we dared hope for. We suggested to the family that Jyoti be given another brain scan, to check that the tumour had finally gone. Jyoti’s occasional smile suggested to everyone that a little miracle had taken place. Fingers crossed.
Anna wanted to celebrate her birthday with Jyoti and her family. They decided to hold a party and sing ‘Happy Birthday to you’. It was 49 C and humidity was 95 % but fortunately someone donated a fan for an hour and biscuits were passed around. Anna said “It was the best birthday party ever”.