World Down Syndrome Day 2017 : MyVoiceMyCommunity

World Down Syndrome Day is organized on 21^st March each year to encourage public awareness of living with Down syndrome. The date 3/21 symbolizes a third copy of the 21^st chromosome in people with Down’s. This day was first marked by the United Nations General Assembly in December 2011 with effect from 2012. All member states of the UN, other UN organizations, international organizations and members of the civil society are invited to participate in raising awareness and sensitizing society. This is a great public platform to bring together the Down’s community, parents, friends and well-wishers, care providers, doctors, researchers and the public to create an inclusive and equal access society.

What is Down Syndrome?

Down syndrome also known as trisomy-21 is the most common chromosomal disorder where the baby is born with an extra chromosome. Every year, nearly 6000 babies are born with Down syndrome. The extra chromosome leads to physical and developmental delays and cognitive disabilities. Children with Down syndrome may have other medical issues like cardiac complications, low muscle tone, hearing and vision loss, seizures, obesity and risk of respiratory disorders. Early access to health care is a must to detect underlying medical issues and prevent complications.

Though children and adults with Down syndrome have different abilities, many of them have inborn talents and gifts. With adequate training and education, some of these children will grow into productive adults capable of earning a living and enjoying the benefits of society.

Down syndrome cannot be cured but it can be prevented by testing the mother when pregnant. Women who conceive after 35 and above have a greater risk of carrying a baby with Down syndrome.

World Down Syndrome Day 2017

Every year, the Down syndrome community, parents, friends, well-wishers, medical community and public come together to celebrate disability as diversity in Down syndrome. This is a day of solidarity and a chance to show support to the Down syndrome community. People with Down syndrome are often viewed through the lens of prejudice and subjected to bullying in schools and other public spaces. This is a day to sensitize the public that all people with disabilities have a right to dignity and safe spaces. This day creates a much-needed platform for the advocacy of the rights of people with Down syndrome. Several issues are taken up like equal access, opportunity, and the right to education, employment and health.

It is a tragedy in most developing countries including India that people with Down syndrome are marginalized and denied equal participation in communities. Education, a key public opportunity is often denied to children with Down syndrome, who are then forced to seek admission in special schools. Despite the Right to Education Bill, children with Down syndrome are prevented from accessing mainstream education. While one day dedicated to Down syndrome may not create a revolution, it certainly creates visibility and educates the public on the facts of Down syndrome.

A day dedicated to Down syndrome can mobilize public and media support to convey the issues faced by the community to the government and policy makers, who need to create specific policy clauses to address the community. It is important to implement policies that focus on equality and inclusion, in access to health, housing, education, employment and all other societal activities. People with Down syndrome need health services, social security and support, and financial inclusion. In India and other developing countries, lack of social security and support causes great worry to parents of children and adults with Down syndrome.

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According to Yamuna, the major worry for her husband and herself is the fact that her son aged 24 may be left alone after their passing on. The parents constantly worry that the sibling may not be able to take on the son’s responsibility. Yamuna says, “There is nowhere we can leave our son safely where he will be looked after. In countries like America and England, there are safe homes for people with Down syndrome, autism and other disabilities. In India, we really suffer for lack of such services. Such a service would be a great relief to us since we can be sure our child will be cared for. For now, we are just worrying what to do.”

#MyVoiceMyCommunity

This year’s theme is especially relevant to parents like Yamuna who are speaking up for their children’s rights and need for services. The call to action is #MyVoiceMyCommunity which asks people with Down syndrome to speak up, make their voices heard, ask for services and influence government policy and action. It is important for the community to speak for themselves and influence local policies since only policy can drive major changes in services like health, education, employment and safe living spaces. Empowering the community with a common platform is essential to create a solid network which can foster a sense of unity and community. Globally, people are asked to share their events, messages, media and social updates using hashtag #MyVoiceMyCommunity and #WDSD17. As the discourse and voices on Down syndrome grows, public awareness and sensitivity to the community expands, thereby creating a safer society for not just Down syndrome but all other disabilities.

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Down Syndrome Advocacy India

India’s most vocal Down syndrome advocacy organization has been the Down Syndrome Federation of India, Chennai led by Rekha Ramachandran, supermom to Babli Ramachandran, a dancer with Down syndrome. The organization engages with a number of advocacy activities including a film on Down syndrome with children and young adults. Indelible is a feature-length documentary on the lives of seven people with Down syndrome. It was specifically filmed in 2012 for the World Down Syndrome Congress in South Africa. The Federation runs Mathru Mandir in Chennai which is a daycare center for children and young adults with programs that include early intervention, vocational training, counseling and assessment. This organization has provided yeoman’s services to people with Down syndrome and their parents.

References:

1. World Down syndrome day - (https://worlddownsyndromeday.org/wdsd-2017)
2. Down Syndrome - (http://kidshealth.org/en/parents/down-syndrome.html)

Source-Medindia