Down Syndrome was first described by English physician John Langdon Down in 1866. It has been 2 centuries since this intellectual disability was discovered. To this day, individuals with the condition still face stigma from society and lack sufficient support.
Find out below to see what you can do to show your support for individuals with Down Syndrome and build a more inclusive society.
What is Down Syndrome?
It is a condition in which a person has an extra chromosome. Typically, a baby is born with 46 chromosomes. Babies with the condition have an extra copy of one of these chromosomes, chromosome 21, also known as “Trisomy”. This extra copy changes how the baby’s body and brain develop, which can result in varying intellectual and physical disabilities. Even though people with the condition might act and look similar, each person has different abilities. The incidence of the condition varies across countries in Asia – in India and Thailand, 1 in 800 births are affected by the condition, in Singapore 1 in 700 births and in South Korea about 1 in 1200 births.
To date, researchers are still unable to uncover the cause of the condition and what factors increase the risk of Down Syndrome. Although one of the possible risk factors is the mother’s age above 35 y/o; there have been younger women with their births affected by the condition.
Stigmas faced by people with DS and their caregivers
Although there have been efforts to raise awareness of Down syndrome, persons with the condition and their caregivers still face stigmatisation by society, especially in Asia where academic achievement is highly emphasised to be successful. In certain Asian religions, such disabilities may even be viewed as karma due to past deeds by ancestors. Potential stressors faced by caregivers or persons with the condition may include:
- Fear of rejection or criticism by society
- Inability to pursue a regular education pathway
- The inability of persons with Down Syndrome to get married or achieve career success
Caregivers may cope with these stressors by limiting social interaction of persons with the condition or even hiding their diagnosis, impacting the social life of individuals with the condition. These perceived stigmas may also adversely affect the mental health of both caregivers and individuals with the condition.
World Down Syndrome Day
World Down Syndrome Day is celebrated throughout the world to advocate for the rights of individuals with the condition. It is being celebrated on the 21st of the 3rd month every year, to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes the condition. The theme for WDSD 2023 is “With Us Not For Us”, encouraging the public to work together with persons with the condition to provide the support and opportunities they need to improve their lives.
What you can do to support
The official website of World Down Syndrome Day has included some actions you can take to support and help individuals with the condition – it could be just as simple as learning more about the condition through their “Down Syndrome Explained Pack” or volunteering with/donating to an organisation for individuals with Down Syndrome in your country.
Organisations supporting Individuals with Down Syndrome and their families in Asia:
- Singapore: Down Syndrome Association
- Malaysia: Kiwanis Down Syndrome Foundation, Down Syndrome Association of Malaysia
- Thailand: Thai Child Development Foundation
- India: Down Syndrome Federation of India
- Indonesia: Indonesian Down Syndrome Society
If you do have the opportunity to interact with individuals with the condition, here are some tips to ensure the interaction is a respectful and positive one!
- Always speak directly to the person with the condition, and do not only interact with their family or caregivers. Be patient and give them time to respond
- Assume that they are capable enough to hold a conversation
- Avoid negative language such as “suffering”, “illness”, “mentally disabled”
Let’s show our support for individuals with Down Syndrome.
List of References:
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881714/
- https://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html
- Birth Defects in South East Asia A Public Healthcare Challenge: Situation Analysis. 2013. WHO Regional Office of South-East Asia
- https://www.healthxchange.sg/children/special-needs/down-syndrome-early-intervention-help
- Stigma and restriction of the social life of families of children with intellectual disabilities in Vietnam. 2012. Ngo et.al. Singapore Med J
- https://www.worlddownsyndromeday.org/about-wdsd
- https://www.worlddownsyndromeday.org/take-action
- https://www.downsyndrome.org.au/about-down-syndrome/how-to-talk-about-down-syndrome/
- https://www.downs-syndrome.org.uk/about-downs-syndrome/#terminology
