“No One Will Be Left Behind” : Moving towards an Inclusive World

Abhigyaan is brilliant in recitation. Shreyan loves playing the keyboard and is a swimming champion. Rudresh is good in sports and yoga. Medhansh plays the Tabla whereas Meghna and Sreya are lovely little dancers. Now any one might wonder who these talented kids are! They are only a few of the fighters amongst a huge population of kids having Down Syndrome.

Down Syndrome is a chromosomal disorder where the 21st chromosome has an extra copy, i.e., instead of 46, there are 47 chromosomes in a person with Down Syndrome resulting in different looks and slow developmental rates. It is named after the British Doctor, John Langdon Down who first clinically identified the condition in 1866. As per Down Syndrome Federation of India, 1 out of 830 live births suffer from Down Syndrome or Trisomy 21, as it is also known. Individuals with Down Syndrome are vulnerable to various mental and physical conditions like speech problem, congenital heart diseases, hearing and eye sight problems ranging to more complicated complexities. Regular health check-ups, therapies, special education and foremost of all, awareness in the society can only provide the support and strength to help these individuals live their life in a near to normal condition.

In Kolkata, a group of mothers – Nitasha, Chaitali, Manjima, Swarupa, Anjana and Neelam – began to speculate how best they could utilize their vast experience and knowledge they had gathered while providing for specific needs of their kids born with Down Syndrome. An initiative was born out of the wish to reach out to parents with children at risk for developmental delays due to Down Syndrome. They knew there were parents who were either unaware of their child’s genetic disorder, or were clueless about how to access early intervention programmes within their reach. Gathering their own resources in terms of health care specialists, counsellors, therapists and special educators along with a sizable communication network, the six mothers, along with their spouses, formed Down Syndrome Association Kolkata (DSAK), a non-profit organisation.
DSAK envisions itself as a motivating force that is working to offer early intervention designed to identify and meet the needs of Persons With Down Syndrome (PWDS) in five developmental areas: physical, cognitive, communication, social/ emotional, and life-skills. It further aims to empower and enable them to become integral part of the mainstream society on an equal basis and live a life of self respect and dignity as rightful citizens of the world.

Battling against many odds, DSAK is moving ahead with the programmes. They have organised several health check-up camps for PWDS. Free medical check-ups have been conducted by paediatricians, heart specialists, ophthalmologists, endocrinologists, ENT specialists, dentists and physiotherapists. The camps also have psychologists and geneticists providing consultancy to families of the beneficiaries.
Between July 2021 and January 2022, DSAK organised a series of Special Covid-19 Vaccination clinics for PWDS and other disabilities, their families and caregivers in Kolkata’s biggest state-run hospital, SSKM. The project was carried out in collaboration with Trisomy 21 Research Society’s Indian Chapter headed by Dr Sujay Ghosh of Calcutta University Science College and his team of researchers. The programme spanned over seven months in which more than 500 beneficiaries were administered vaccination.

DSAK’s future plans include reaching out to PWDS and their families living in the peri-urban and rural areas with advocacy, health and livelihood programmes with teams of specialists.
Equipped with a rich corpus of experience, knowledge and a panel of experts the organisation is strategically moving ahead to achieve the following objectives –
• Initiating early intervention for families to better meet their child’s needs from an early age and throughout their lives.
• Using self advocacy and vocational training programmes as means for making persons with intellectual and developmental disabilities financially and socially self-reliant.
• Facilitating livelihood, entrepreneurship and sustainable job opportunities by equipping PWDS with job skills.
• Promoting self help groups among less privileged parents of PWDS to make them economically more stable.

March 21 is observed as World Down Syndrome Day each year in order to raise public awareness of Down syndrome. The day is celebrated since 2012 with the recommendation of United Nations General Assembly, the aim of which in attaining sustainable goals by 2030 is “No One Will Be Left Behind”

In a world that accepts the stereotypical and rejects the unusual, survival is a tough job. DSAK aims to work as a catalyst between the special needs persons and a conservative society to create a more inclusive world for all – to coexist in a peaceful togetherness.

Contact details:
Down Syndrome Association Kolkata (DSAK)
105, Acharya Prafulla Chandra Road, Kolkata-700009, West Bengal, India
Phones: +91-9830421879; +91-9830411480; +91-9830194707
Email: dsakolkata21@gmail.com

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