Written by Pulse editorial team with inputs from Arushi Batra and Nishtha Bhargava
21st March is celebrated as World Down Syndrome (DS) Day to create awareness and sensitize people towards DS. When DS was discovered in 1866 by John Langdon Down, children born with the disorder did not live beyond 9 years. They were sent away soon after birth to institutions that couldn’t care less for them.
Today, we know that it is a genetic disease and manifests because of an extra chromosome 21 that leads to characteristic facial features and typical behavioral patterns, but the cause is still unknown. Individuals with DS often face other health issues, like congenital heart defects, leukemia, epilepsy, sleep apnea, or dementia. In our attempts to understand DS, our understanding of congenital heart diseases and intellectual disabilities has increased and the current research studies on DS are likely to provide treatment options for conditions like intellectual disability, Alzheimer’s disease, and some forms of cancer.
Our awareness about the disease and its management has made it possible for individuals with DS to live up to reach senior citizen status. There are numerous inspiring stories of individuals with DS that excelled in life and are contributing to diverse fields. Actor Gopikrishnana, Rashtriya Bal Puraskar award winner Rishabh, weaving engineer Gayathri Sridharan, and fashion models Riza Reji and Zainika Jagasia – all of them have an extra chromosome 21. People would say that they are living a normal life even though they have DS. As we mark World Down Syndrome Day on 21st March 2023, we may ask, “What is normal?”
Normal is different for each of us. For some, genius is normal. For others, surviving is normal. Do we need to live a ‘normal’ or ‘overachiever’ life to be validated? Or are we open to accepting the fact that each of us finds purpose within the ambit of our limitations and pushes our achievements a little beyond our aspirations? The day the society at large accepts this, there would be no need of a Down Syndrome Day. As Malcolm Gladwell says in Outliers, “Apparently genius is overrated. And apparently, success is not just about innate ability — it’s a combination of several key factors like chance, luck, opportunity, hard work, and culture.”
But what we need to remember on World Down Syndrome Day is that ‘normal’ is just an average value and conditions that are shared by a large number of people. It is not something that defines any individual, just like having an extra chromosome cannot define individuals. Abilities, achievements, personalities, and behavior are dependent on a diverse set of genetic and social factors.
Let us not segregate people into normal and not-normal, genius and not genius, achievers, and non-achievers but accept them and support the creation of opportunities that focus on equity and not equality.
So, let us ensure that future generations will not have to dedicate a special day to creating awareness for acceptance and inclusion as for them there will be nobody who is not normal.
Illustration by Nikita Bhor