- Den was born with a rare genetic disorder, Dopamine-Responsive Dystonia
- Den hosted a radio show ‘Haal Chhero Nah Bondhu’ for 5 years
- Den was awarded the ‘Best Actor Award’ at Cincinnati Film Festival
New Delhi: Sayomdeb Mukherjee was born into a joint family in Kolkata in November 1980. Like any other toddler, Mukherjee, fondly named Den, would crawl around the house and make the family laugh with his antics. But over time, his muscles started to contract and by the age of five, his speech got affected as well. Den was apparently born with a rare genetic disorder, Dopamine-Responsive Dystonia, as a result of which he was non-verbal till the age of 25. The disorder itself was first discovered in 1995 by Dr Segawa from Japan and was also known as Segawa syndrome.
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Talking to the Banega Swasth India team about the disorder and its diagnosis, Den said,
Dopamine is an enzyme used by the nervous system to transmit messages between nerve cells. My body doesn’t produce enough dopamine and whatever is there is secreted by the intelligence centre as a result, my motor function was affected tremendously. After 15 years of my birth, the disorder was first discovered to mankind which was followed by medical trials. I remember, back then, doctors used to refer to foreign medical journals for the latest information. My father’s friend, a pediatrician, got one such journal that had only a paragraph on Segawa syndrome. In the West, people didn’t know much about the disease but still, I feel lucky to get medicines by the time I turned 25.
The disorder never stopped Den from learning and gaining knowledge in all spheres of life. While Den’s father, a doctor by profession, used to teach him biology, physics, physiology and anatomy, his uncle used to educate him about Greek mythology.
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Calling himself family’s “blotting paper”, Den said,
My uncle, who passed away in September, last year, played the role of Chanakya in my life. I learned about various kinds of scriptures and even learned from watching and listening to people discuss cinema. My family would shoot arrows, in the form of knowledge, from all sides, at me. I had good comprehension power. My parents always ensured I travel because they believed that without travelling, I won’t get the ethos of my country.
The communication between Den and his family was beyond the scope of regular verbal communication. A blink of an eye would mean ‘yes’ and a particular sound would mean ‘no’. He also had a tongue switch, a device he would use through his tongue to type and communicate.
I had no voluntary muscles in my body. I was tried out with various switches. Like a switch was placed in front of my tongue and there was a visual keyboard. I would select letters and words being displayed on the keyboard through a tongue switch. That’s how I would work and present papers at conferences. Because of this, my tongue is permanently swollen. Later, I switched to eye blink switch, said Den.
The Mukherjee family never faced difficulty in communicating with Den and deciphering his words, whatever little he could utter once in a blue moon. While conversing, the family would maintain eye contact with Den and take him through the alphabet one by one.
For instance, if I am to say ball, they would ask, is the first letter between ‘a’ and ‘d’? Then I would choose the letter by blinking, said Den.
Den’s physical disabilities extend to quadra plegia – paralysis of four limbs, deformities all over the body, bent spinal cord and dyslexia. His disabilities are deteriorating in nature which means the symptoms can return if Den stops the medication.
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Despite all disabilities, 41-year-old Den has essayed various roles and today, he is an author, award-winning actor, a radio jockey and is even helping other people with disabilities overcome their challenges and lead fulfilling lives.
As a kid, Den went to kindergarten and then moved to the Indian Institute of Cerebral Palsy (IICP) in Kolkata. In 2005, when he started to recover, Den appeared for certified education. At the age of 27, he passed class 10 through the National Institute of Open Schooling (NIOS) and appeared for class 12 exams at 29.
During that time, I had a big crisis because my parents wanted me to study and I was frustrated on losing time. I wanted to catch on life I lost because of my disability. I remember learning computer programming and getting an internship during class 12 exams but since it didn’t excite me, I resigned and joined the media wing of IICP, he recalled.
While working at IICP, Den met Joydeep Banerjee, Station Programming Head of 91.9 Friends FM in Kolkata. What Den thought to be a regular meeting cum interview with a radio station turned out to be a job opportunity for him.
Remembering the meeting and the following days with a big smile on his face, Den said,
Joydeep asked me, ‘What do you think of life?’ and I said, ‘Life is the beautiful gift of God, often misused by mankind’. Out of nowhere, he offered me a radio show which was a surprise. Though I am a Bengali, my communication had always been in English having 26 alphabets as opposed to 42 in Bengali. It took us 12 hours to record the first episode of the show and I thought this is my last day at this radio station. I didn’t resign from IICP because I wasn’t confident in my skills. So, for the first 15 days, I was running two jobs. From 8am-2:30pm, I would be at IICP followed by radio from 3pm-11pm and then I would go home, shower, have dinner and study from 1am-4am for my graduation.
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Den went on to host a radio show named ‘Haal Chhero Nah Bondhu’ (Never Give Up – Dear Friend) for five years and did 822 episodes. He was felicitated by Radio Excellence Award and Best Bengali Radio Jockey in 2014. Immortalising his radio journey, Den wrote a book ‘52 Steps’ which was released on February 9, 2019.
From 2015-2018, Den worked as a theatre artist, and later, moved back to IICP. In between, he wrote another book ‘Memoirs of Time’ which was launched in Kolkata on January 23, 2016, and also worked in a film ‘One Little Finger – Ability In Disability’ which was released in the US in 2019 and worldwide on November 16, 2020. Written and directed by Rupam Sarmah, the film cast includes over 80 children and adults with disabilities.
Coincidentally, Den played the lead role of an RJ in the film and was awarded the ‘Best Actor Award’ at Cincinnati Film Festival on September 5, 2019. Talking about his disability and acting debut, Den said,
I am a person with a learning disability. I have dyslexia. People have read out to me and I have learned from listening. Now, the biggest friend that I have is audiobooks. While working in the movie, I had to listen to the dialogues, remember, recall and deliver. Getting an award was horrific because I wasn’t expecting and I was scared of losing it. I know no producer would trust me with another movie even though I am passionate about acting.
To work for disabled people and also build an ecosystem for generations to come and people who might be born with disabilities, Den is now working with EnAble India, an NGO that has been working towards the economic independence and dignity of people with disability since 1999.
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Den believes that he had to face the brunt of the late diagnosis of the genetic disorder. His niece, who has a similar genetic disorder, is living a life free of any disability. Taking this into consideration, Den emphasised on inclusion and the change in the outlook of people towards disability. He said that back in the 80s, people had no knowledge of disabilities. This changed in the 90s when people started to get aware and later started to understand a bit of disability.
In the first decade of the millennium, people started to provide equality, talk about inclusion and in this particular decade, I am personally looking for headway in an inclusive society where more disability professionals are going to be developed, more inclusion is going to be made in the social sphere. Friendship and love wouldn’t see the barrier of disability. Each and every aspect of life will be inclusive in its totality. A total egalitarian society is not only an aspiration, it is a possibility that I see in my lifetime to happen, he said.
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You can listen to the full Banega Swasth India podcast discussion by hitting the play button on the Spotify player embedded above.
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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.