Self-Advocate at the World Down Syndrome Day 2020

“ Yes we do require support and guidance for our health , job and money management, but we want you to have faith in us and involve us meaningfully. IT MAINTAINS OUR DIGNITY” – Sahil Singh, Athlete from Lucknow, UP , Member National Athlete Input Council and National Youth Council

“I love Special Olympics and my son is a Champion”, says Dr Bhawna M. Singh Specialist (Obstetrics & Gynecology), Lucknow UP, mother of Sahil Singh, an Athlete leader from Lucknow, UP. “Special Olympics is a fantastic platform for our children to develop courage, confidence and self-esteem in addition to physical fitness”.

Sahil , 23 yrs , with Downs Syndrome, was invited as a speaker (Self-Advocate) at the World Down Syndrome Day 2020 event which was to be held in Geneva on the theme ‘We Decide’ on 20th March by Down Syndrome International, as a side event to the 23rd session of the UN committee on the Rights of Persons with Disabilities. The event was converted into a virtual one owing to the ongoing global health crisis.

Sahil has been actively and articulately participating in various forums, entering the genre in 2015 when he attended the 12th World Down Syndrome Congress (WDSC) held in Chennai, India, which provided him a platform to interact with many more persons with Down Syndrome.

His induction in the Athlete Leadership University program held in New Delhi in 2019 and subsequent participation in the National Youth Summit 2019, Youth Activation held in Delhi in Jan 2020, his SNF-funded Unified Sports activities in the city, have mapped his journey as a growing leader. His moderation at the 3rd India International Down Syndrome Conference (IIDSC) in Chandigarh in September 2019 , inviting the speaker of Keynote address, Dr Bhavani Sriram Specialist in Pediatric Medicine (Singapore) on stage, chairing her session and felicitating her at the end, is nothing less than a miracle.

Does it even matter now that years back it was expected that Sahil’s speech would reach 4 words by the time he is 4 years of age. This was estimated around the time of his birth. However he spoke his first word at age 2

It is overwhelming to recall the trials and tribulations that were confronted earlier, when he was born in January 1997. Born to parents, both of whom are doctors, his condition was clear to them on the day of his birth. The challenges accompanying his condition were well known to them, triggering a significant amount of anxiety along with a new perspective of aligning the days to come with setting the stage for the best life possible for their son. His birth followed the predicted frequent hospital visits, sessions with the Psychologists, extra safeguard against infections etc. Apart from them, there were social challenges which needed to be wrestled. The Crèche at the hospital where both his parents worked was quite accepting of him, alongside all other children without Special needs, but somewhere a more open attitude from the staff could have been more comforting for Sahil. “The greatest difficulty has, and to an extent is, the need of an attitude change”– Dr Bhawna

His parents approached a couple of playschools in Delhi, all of which never specifically cared for his hygiene. This constant struggle to find an adequate environment for Sahil finally concluded when they approached a Playschool called ‘Crayons’ Hauz Khas New Delhi. Sahil was their first child with Special needs.

At age eight Sahil’s family got re-located to Lucknow, UP and with that started a whole new chapter in their lives. He joined the Study Hall , an Integrated School and SO Bharat together in 2005. Observing that he was unable to cope with the studies beyond Class three , he was shifted permanently to DOSTI, the special wing of the school. He showed rapid progress and cleared grade 12 from the National Institute of Open Schooling (NIOS) in April 2019 with 83% marks.