Observed on March 21st of every year, World Down Syndrome Day, attempts to raise awareness in the public about Down Syndrome: what Down syndrome is, what it means to have Down syndrome, and how persons with Down syndrome play a vital role in lives and communities. Started under the guidance of United Nations General Assembly, it has been observed since 2012. While this year marks the 9th anniversary of the Day, the selection of this particular date, i.e., March 21st – is of special importance. The 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome. Thus, the day presents special opportunity to address the social stigma, discrimination and prejudice individuals born with Down Syndrome struggle with.
While we have moved away from the identification of intellectually disabled individuals as ‘retarded’ or ‘slow,’ this effort at understanding and treating them as individuals of their own accord largely remain restricted to the healthcare professionals and practitioners. Approximately 1 child in every 850 - 900 live births is born with Down Syndrome in India every year (Gadhia, Avani, & Salil, 2015) – yet the acceptance of the same remains low as ever.
Individuals with Down Syndrome have reported being subjected to negative attitudes, low expectations, discrimination and exclusion (Call to Action, 2020). These discriminatory practices warrant that people with Down syndrome are left behind and do not have opportunities to participate fully in decision making about matters relating to or affecting their lives at all levels. This occurs in society, but sadly also within the disability community and the Down syndrome community. As a way to counteract this, the theme for 2020 was decided to be ‘We Decide,’ emphasizing on how the decisions taken for them are taken by them/ with their consultation.
In accordance with this, as an attempt to prepare parents of children with Down Syndrome, a study by Skotko, Levine & Goldstein (2011) , investigated the self-perception of people with Down Syndrome. Findings from their research suggests that an astounding 99% of the participants revealed feelings of happiness with their lives and, love for their families.Moreover another 97% of people indicated that they liked how they looked and who they were.
This goes against the general perception that people hold for people with Down Syndrome; generalizing them as a hapless, helpless, unempathetic lot. Furthermore, they emphasized that they share similar hopes and dreams as people without Down syndrome.
At the root of this discrimination and exclusion is a lack of understanding of the challenges these individuals face across their lifetimes and a failure to support them with the opportunities and tools needed to participate meaningfully. As part of Down Syndrome Awareness Day and even otherwise, we as individuals, need to reevaluate our biases, throw out the ones not serving any purpose and move towards creating a safe and inclusive space for everyone.
Gadhia, P., Avani, K., & Salil, V. (2015). Prevalence of Down Syndrome in Western India: A Cytogenetic Study. British Journal of Medicine & Medical Research, 5(10), 1255-1259.
Skotko, B., Levine, S., & Goldstein, R. (2011). Self-perceptions from People with Down Syndrome. NCBI. doi:https://dx.doi.org/10.1002%2Fajmg.a.34235