‘Downside up celebrating down syndrome’ by Arpita Sawant

Thesis Abstract:

Down’s syndrome is the most commonly occurring congenital condition. It is characterized by the presence of a whole or a part of an extra chromosome in the genome of an individual. According to WHO, Down’s syndrome is present in approximately 1 in every 1000 births worldwide, which is quite alarming, considering how little talk has been done on the topic. Even so, there is a major lack of awareness regarding Down’s syndrome which leads to toxic negativity and social stigma attributed to it, especially in India. I intend to thus create a space that will allow honest and truthful conversations based on real life experiences with Down’s syndrome. This space would then enable the sharing of resources, building of communities and instating a more positive and hopeful outlook on life with Down’s syndrome.

I came across various real life stories that underlined the fact that even in this day and age where so much information is available to us on our fingertips, there still lurks a fair amount of ignorance and unawareness regarding Down syndrome, especially in India. A certain amount of negativity still prevails, and most people who haven’t experienced it, are still quite oblivious to its existence. Even with the passing of ‘The Rights of Persons with Disabilities Act’ in 2016, unless and until the clouds of ignorance are dispersed, it will be very difficult to ingrain the idea of inclusion within the society to an extent where it doesn’t become forced and is normalized. Keeping this juncture in mind, I decided to come up with a solution around the umbrella of awareness. For this, I would focus on creating a digital space that can allow honest conversations about Down syndrome, with an emphasis on getting solid and truthful answers to all sorts of questions/ assumptions from reliable sources. This space can then give rise to a platform for easy community support where individuals with similar experiences and experts can connect with each other. Through this, individuals can inspire, encourage and come to each other’s aid. Moreover it would also serve as a tool to help care individuals with Down syndrome better. With this, I attempt to foster a spirit of optimism so strong that it would help break the myths and negativities which are very casually and unknowingly attributed to life with Down syndrome, with the hope of paving a way to its normalization and thereby inclusion in the society.