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 for 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.
What Is Down Syndrome?
Before we talk more about why the notion is problematic, here’s something about Down Syndrome. It 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. 21 March is observed as World Down Syndrome Day 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 living 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 scars and demotivates individuals. 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” from Down Syndrome, they struggle and fight despite Down Syndrome.
But everything is not bleak. Movies like Ahaan and 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, but it was also 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, artist or even a TEDx speaker.
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 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 Down Syndrome 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.