New Delhi: A disability is challenging but may not be an impediment in fulfilling dreams and attaining success in one’s chosen field. It needs courage, strong will and a supportive environment. 27-year-old Benzy Kumar, a singer with autism is an example of one such achiever.
Throughout her journey, the determination and unconditional love of her parents gave Benzy the support she needed to become independent and make a name for herself. While her family was thrilled to have her, they were also nervous and confused about her condition, as they were yet to grasp the full extent of what her disorder meant for her and their lives. Recalling the struggles that they had to face to learn about the medical condition of their child, Benzy’s mother, Kavita Kumar, a 59-year-old social activist said,
We were thrilled to have a daughter but because she was a premature baby and was very weak at the time of birth, she was kept in an incubator at the hospital for 40 days. When she came home, we saw that Benzy was not like other babies. Her body was stiff with hardly any movements. Even her eyeballs did not have any movements and her blinking too was very rare. At first, we thought that it was some kind of a reaction to the rigorous treatment that she went through for the first 40 days of her life. But after some days, we consulted a doctor about this. The doctor said that there is some mental development disorder and declared her as ‘mentally retarded’. We consulted some more doctors who also said the same, adding that Benzy will be bed-ridden for life or at best will be rely on a wheelchair.
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Devastated by the diagnosis, Benzy’s parents decided to continue their research to find out exactly what was wrong with their child and what would be best for her in that condition. Ms Kumar added,
27 years ago, autism was not a well-known disorder in India. All we were told was that our child comes under the ‘mentally retarded’ category. Our relatives said that we should just keep a full-time maid to look after her as nothing else can be done for children like her. But why is she bed-ridden? What would her future be like? How do we know what is good for her and what is not? There were still so many unanswered questions that we were struggling with. To know more about Benzy’s illness, we went to United States of America where doctors examined and observed her. She was then diagnosed with Autism Spectrum Disorder (ASD) by the American Psychiatric Association. The doctors in America told us that the symptoms of ASD may become less pronounced as she gets older and she may go on to live a typical life as she ages but with continued support. This gave us some understanding, hope and a sense of direction.
According to the World Health Organization (WHO), Autism Spectrum Disorder is a neurodevelopmental disorder that impacts the nervous system and affects the overall cognitive, emotional, social and physical health of the affected individual. The Rights of Persons with Disabilities Act, 2016 of India has recognised ASD as a disability. It affects a person’s social skills, repetitive habits, speech, and nonverbal communication abilities. The Rehabilitation Council of India, a statutory body under an Act of the Parliament that works towards Rehabilitation and Special Education says that approximately 1 in 500 people in India have Autism.
According to Ms Kumar, Benzy also suffers from partial paralysis because of which she cannot move her left hand. Ms Kumar decided to give up her career as a school teacher and dedicate her life in doing everything to enable Benzy to at least perform her basic day-to-day task without the help from others.
Today Benzy has achieved more than just the ability to take care of herself. She has not only overcome her own challenges but is a musician who has won many awards and given more than one thousand performances all over India and internationally. Even though Benzy cannot talk fluently, she has developed the talent of singing the lyrics flawlessly.
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Benzy’s musical journey began when she was about two years old.
One day when I played the music on one of her toys, I noticed movement in Benzy’s eyeballs but I was not sure if it was the music or the light that induced some positive reaction from her. Then I experimented with other sounds and lights. I played some Indian Classical music in her room and soon recognized that she was responding positively to the raagas. In fact, it seemed to have a healing effect on her as it calmed her aggressiveness and restlessness. It was then that I decided to adopt Indian Classical music for therapy to help her voice and speech, said Ms Kumar.
Benzy’s parents studied more about the healing power of the raagas and found that different notes in Indian Classical Music stimulate different nerves in the body. They introduced music in every aspect of Benzy’s everyday routine. According to Ms Kumar, being an autistic child, Benzy had trouble with adjusting to new things and situations. It takes patience and repetition of certain actions for an autistic child to learn something or accept something new in their lives, she said. It took about four years for Benzy to sing her first raag, but after that, there was no looking back.
An autistic child’s brain is like an empty CD. You can keep feeding it with the information. However, when and how will their brain play the information and what will be their behaviour is unpredictable. They usually have a good memory but you cannot make them sit still and focus on something. Although now she is quite stable, Benzy was extremely restless as a child but with a very good memory, Ms Kumar said.
At the age of 5 years, Benzy started training in Indian classical music. Because she could not sit at one place for long and focus, many teachers gave up on her. It was only when a 79-year-old Music teacher agreed to recite the basic notes and raagas to her without expecting her to sit at one place, that she actually started learning music. Gradually, she became comfortable with this routine and began to calm down and sit with the music teacher.
Benzy was quick to pick up the notes and memorise the raagas, solely by listening. She was very interested in music. Soon she started singing. We then introduced piano to her and after a while she started playing the raagas on the keyboard on her own. Even though Benzy can play piano using only her right hand, she enjoys it very much. Within two years, she became well-versed in few of the raagas and at the age of 7, she gave her first ever stage performance. I started using music to teach her alphabets. I wanted her to learn how to read and write. It took a lot of patience and time.
To further augment her talent, Ms Kumar decided to record her music and send it to Singer Shubha Mudgal seeking her feedback and guidance. Ms Mudgal recognised Benzy’s talent and encouraged her parents to continue her training. While recording in studios was not an easy task for Benzy as wearing headphones and singing on a track were new concepts for her, she recorded her first album titled ‘Basic Raagas’ at the age of 9.
At the age of 10 years, Benzy recorded her second album titled ‘Koshish’. Because Hritik Roshan was Benzy’s favorite actor, her mother went to present him with her CD. Impressed by her talent, Mr Roshan decided to launch her album. For ‘Koshish’ which consists of prayer songs performed by her, Benzy won her first national award, from the Ministry of Social Justice and Empowerment (MoSJE).
Benzy loved listening to the songs of the film ‘Kaho Na Pyar Hai’. So, we thought maybe she COULD play and sing some Bollywood songs also. I taught her the lyrics to some of the songs sung by Lata Mangeshkar and Asha Bhonsle. She enjoyed these a lot and this time when we went to the studio to record another album of Lata ji’s and Asha ji’s songs covered by her, it was much easier. Benzy won her second national award, this time from the Ministry of Women and Child Development for this album. She won her third national award from MoSJE which was presented to her by Former President Pranab Mukherjee for her album that contained basic raagas recited by her.
Apart from the three national awards, Benzy has earned many other honours including two-time appearances in the Limca Book of World Records- in 2005 for being the first autistic child to release a music album and in 2014 for being an autistic person with the maximum number of music albums in the world. Benzy has, so far, recorded 11 albums.
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Benzy’s music came to a standstill when her father passed away in 2010 after a long illness. She and her mother were struggling to cope with the loss of her father. Benzy stopped singing completely and started rejecting music.
I was completely shattered when I lost my husband. He was my pillar of strength and my partner in this journey and all of a sudden, I was all alone. Because I was going through a very difficult time, I was unable to give as much attention to Benzy as I did earlier. Benzy was grieving too. Every evening from 5-5:30pm she used to cry loudly because at this time her father used to come back from office. She was missing him terribly as it was a routine for her to see her father come home every day at 5-5:30 pm. After some days, I pulled myself together and decided that I have to be strong for her.
Without forcing her to sing or take a class, Ms Kumar started reintroducing music in Benzy’s life as a healing mechanism for her grief. She started taking her to the parks and temples in the evening every day in order to build a new routine for her. When Benzy stopped crying in evenings, her mother started taking her to musical events in and around Delhi. It took almost two years for her to start singing again. Now, despite her inability to converse fluently, Benzy has learnt to express her emotions through music.
With an aim to utilize learning from her experience to help and motivate parents of other autistic children, Ms Kumar started the Dhoon Foundation. The NGO aims to help disabled children get trained and established as artists in society. She said that she witnessed the healing power of music on Benzy and wanted to help other children facing the same challenges. Ms Kumar said,
Parental involvement plays a critical role in the development of children with autism. They must spend quality time with their children in order to identify their talent. They must not hide their children or be ashamed or hesitant. For every parent, their children should be precious, irrespective of their abilities. The support that special children need has to come from families, the community and the society at large.
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NDTV – Dettol have been working towards a clean and healthy India since 2014 via Banega Swachh India initiative, which is helmed by Campaign Ambassador Amitabh Bachchan. The campaign aims to highlight the inter-dependency of humans and the environment, and of humans on one another with the focus on One Health, One Planet, One Future – Leaving No One Behind. It stresses on the need to take care of, and consider, everyone’s health in India – especially vulnerable communities – the LGBTQ population, indigenous people, India’s different tribes, ethnic and linguistic minorities, people with disabilities, migrants, geographically remote populations, gender and sexual minorities. In wake of the current COVID-19 pandemic, the need for WASH (Water, Sanitation and Hygiene) is reaffirmed as handwashing is one of the ways to prevent Coronavirus infection and other diseases. The campaign will continue to raise awareness on the same along with focussing on the importance of nutrition and healthcare for women and children, fight malnutrition, mental wellbeing, self care, science and health, adolescent health & gender awareness. Along with the health of people, the campaign has realised the need to also take care of the health of the eco-system. Our environment is fragile due to human activity, that is not only over-exploiting available resources, but also generating immense pollution as a result of using and extracting those resources. The imbalance has also led to immense biodiversity loss that has caused one of the biggest threats to human survival – climate change. It has now been described as a “code red for humanity.” The campaign will continue to cover issues like air pollution, waste management, plastic ban, manual scavenging and sanitation workers and menstrual hygiene. Banega Swasth India will also be taking forward the dream of Swasth Bharat, the campaign feels that only a Swachh or clean India where toilets are used and open defecation free (ODF) status achieved as part of the Swachh Bharat Abhiyan launched by Prime Minister Narendra Modi in 2014, can eradicate diseases like diahorrea and the country can become a Swasth or healthy India.