Author Archives: Nayi Disha Editor

Devanshi Joshi from Delhi gets ready for her day at work for a grocery firm where she works in the marketing team. Aditi is arriving at her cafe in Belapur, eager to serve her customers. Adil is someone who puts his best foot forward with every shift at the five-star hotel he works with. Though they seem like different individuals, there is one thing that binds them together. They all have Down Syndrome. At the time of their birth, their parents were told of the bleak future of their children because that’s how a diagnosis of Down Syndrome is usually treated in India. Someone with Down Syndrome is thought of as someone who will not be able to contribute to society.

 Devanshi Joshi

Before we talk more about why that’s problematic, here’s something about Down Syndrome. Down Syndrome is a condition in which extra genetic material causes delays in the mental and physical development of a child. One of the most common genetic disorders, the condition is characterised by the presence of an extra 21st chromosome. It is not a disease and there is no way to prevent it. In India, around 32,000 cases are observed annually. March 21 is observed as World Down Syndrome Day – This particular date is chosen because of the reference to 21 and 3, the triplication of the 21st chromosome. Though there are many myths around the condition that are persistent, one of the most harmful ones is that individuals with Down syndrome cannot live a rich and fulfilled life.

Not just dangerous myths, unfortunately, there is a lot of stigma in our society around Down Syndrome. Harsh comments from neighbours and people around the scar and demotivate. There is also not enough sensitivity in many healthcare professionals on how to break the news of this condition to parents and caregivers so they are emotionally equipped for the journey ahead. The otherification of people with Down Syndrome is very real. But the thing to understand is that people do not ‘suffer’ with Down Syndrome, they struggle and fight despite Down Syndrome.

But it is not that everything is bleak. Movies like Ahaan, Raising the Bar actively pushed forward inclusion and representation for people with Down Syndrome. Not only did it break stereotypes about how the condition is portrayed on screen, it was an empathetic look at life with Down Syndrome. In addition, children with Down Syndrome are now attending inclusive schools and going on to pick their careers and have dreams like being an entrepreneur, an artist or even a TEDx speaker.

Still from Abhivyakti – a platform by Nayi Disha to showcase the talent of children with intellectual and developmental disabilities

With how things stand, it is our responsibility as a society to rise to the occasion and provide opportunities and nurture diversity at every step going forward. As neighbours, we can be supportive and understanding of families and individuals with Down Syndrome and not add to their discrimination. As fellow parents, we can encourage kids to be helpful and inclusive in addition to looking out for parents and caregivers of those with Down Syndrome. As school teachers, we can educate ourselves on how to make our classrooms and lessons more inclusive for children with Down Syndrome. And lastly, as physicians, we need to be more empathetic and kinder while interacting with people with Down Syndrome as well as their parents and caregivers.

The world is not a fair place but at the end of the day, we get to sculpt the world we want to live in. Every person deserves an equal chance at a great life but that will happen only when we look at our differences as richness and flavour and not hindrances.

Nayi Disha works as a life-long partner for families impacted with Autism and other developmental disabilities. For more information and resources on Down Syndrome as well as support groups, please visit nayi-disha.org or call our FREE helpline at 8448448996