World Down Syndrome Day 2020: Aspirations and Way Forward
World Down Syndrome Day is annually observed on March 21 to raise public awareness on Down syndrome, a genetic disorder caused by having an extra 21st chromosome. According to the United Nation, about 1 in 800 people are born with Down syndrome. World Down Syndrome Day (WDSD) is observed on 21 March every year.
On this day, people with Down syndrome and those who live and work with them throughout the world organise and participate in activities and events to raise public awareness and create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome.
Down syndrome is a naturally occurring chromosomal arrangement that has affected people of all racial, gender and socioeconomic backgrounds, and has occurred all through human history. Down syndrome also known as trisomy 21, is a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It is usually associated with physical growth delays, mild to moderate intellectual disability, and characteristic facial features as well as acute medical problems, that can vary from individual to individual.
While Down syndrome has occurred all throughout history, it wasn’t classified as a mental disability until English physician John Langdon Down did so in 1866. With his innovative initiative Down syndrome is named according to his name. During the 20th century, doctors would learn quite a bit more about Down syndrome and it became one of the most recognizable forms of mental disability in the world. According to the United Nations, Down syndrome affects 1 out of every 800 births in the world.
In the early 2000s, various Down syndrome advocacy groups, such as Down Syndrome International, have organized various events for World Down Syndrome. It would take the United Nations several years to officially acknowledge this day and promote it. Finally, after long consultations, The United Nations General Assembly declared March 21st as World Down Syndrome Day in December of 2011 by issuing Resolution 66/149. The following year, the first World Down Syndrome Day was observed on March 21st as it has every year since then.
Current Scenario of Down syndrome
About 50% of all adults and children with Down syndrome will face a major mental health concern during their life. The most common mental health concerns among those with Down syndrome include anxiety, obsessive-compulsive behaviors, repetition behaviors, inattentive behaviors, sleep problems, depression, autism spectrum disorders and the progressive loss of cognitive skills. These problems can be further acerbated if the adult or child has multiple medical problems. If they do, then they can face an even higher rate of mental health difficulties.
World Down Syndrome Day is recognized in many countries all over the world. Many organizations promote this day using a variety of events. These can include concerts, lectures, public exhibits, town hall meets and other activities. Many Down syndrome advocates will also use the day to get the word about Down syndrome and to showcase the abilities and accomplishments of those who were diagnosed with Down syndrome. Many of these events will place their focus on encouraging those with Down syndrome to seek a life of freedom, independence, and self-advocacy.
National Action Point
World Down syndrome Day has been observing in the country since the year 2014. Down Syndrome Society of Bangladesh and Japan Bangladesh Friendship Hospital took the initiative for the first time to celebrating the day at national level. Later Bangladesh government has also given equal importance to this day and the Social Welfare Department has initiated various programs to celebrate the day since 2016. Now it has become a national event in the country every year emphasizing the rights and social inclusion of the people with Down syndrome in the country. National celebration of the day include various programs like rally, seminar, cultural programs, TV shows etc. Approximately 2,00,000 people are reported to have Down syndrome now in Bangladesh, though there is no authentic data and source of information at country level.
The theme for 15th World Down Syndrome Day in 2020 is “We Decide”, a timely slogan recognizing the rights of the people with Down syndrome to take their individual choices and decisions at family and community level. This very slogan is an important step towards raising the single global voice of the people with Down syndrome at their own community.
Recommendations & Way Forward
Given the country scenario and activities, still there is lack of funding opportunities for the betterment and rehabilitation of the people of the Down syndrome. There is lack of awareness, motivation from parents and community for the people with Down syndrome.
Needless to say, enhanced support and collaboration should be strengthened for this community.
Moreover, the policy of public private partnership should be introduced for the benefit of Down syndrome community.
Program specific intervention may be inaugurated for their social inclusion.
One of the major drawbacks for the adults with Down syndrome is the lack of job opportunities at country level. In every sector they are neglected and looked down upon as disabled person. This type of superstitions and negative attitude should be eliminated for their welfare. If we change our attitude and perception and give them their due space, they will definitely prove their inherent ability and skills for the service of the country. Thus community empowerment will be ensured and a wave of mutual cooperation will emerge in the society. May be those days are very close to us!
(Article prepared by the members of the research team , Down Syndrome Society of Bangladesh, on the occasion of 15th World Down Syndrome Day, 2020)