Today (March 21) is World Down Syndrome Day (WDSD). It is a global awareness day that the United Nations have officially observed since 2012. In December 2011, the UN General Assembly declared March 21 as World Down Syndrome Day.
The date for WDSD being 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.
The estimated incidence of Down Syndrome is between 1 in 1,000 to 1 in 1,100 live births worldwide. According to United Nations, approximately 3,000 to 5,000 children are born with this chromosome disorder globally each year.
This year's World Down Syndrome Day theme is "#inclusion.”
Indian Weekender spoke to Zandra Vaccarino, National Executive Officer, New Zealand Down Syndrome Association (NZDSA), to know about the significance of the day, the increasing need for inclusion for people with Down Syndrome by society, and much more.
As an association, what is the significance of this day for you?
WDSD) is a global awareness day that the UN has officially observed since 2012. The NZDSA is delighted that we are the first country to celebrate World Down Syndrome Day celebrations each year. It is a significant day as all around the country, people with Down Syndrome, their parents and their whanau connect to celebrate all people with Down Syndrome.
Are you planning to do any special event?
This year, Covid-19 restrictions have again stopped Down Syndrome groups around the country from hosting their usual WDSD celebrations. However, the NZDSA has pulled together a mega-online community event, The Big Connect, which will host known people from the disability sector, which will start at 7 pm today. This is an open event, and the link is the NZDSA's Facebook page.
The Big Connect will be opened by the Minister for Disability Issues, Carmel Sepuloni before she hands the stage to the President of Down Syndrome International, Bridget Snedden, and Paula Tesoriero, the Disability Rights Commissioner. Snedden and Tesoriero will then be part of an intriguing panel of high-profile experts and advocates around human rights discussing the WDSD theme #Inclusion Means. The panel experts will focus on human rights and will explore this in the context of education, employment, sports, and arts.
How many people are there with Down Syndrome in NZ?
Currently, stats of people with Down Syndrome are not collected in NZ. The guestimate is that 1 in 1000 people live with Down syndrome. The NZDSA believes that it is imperative that the NZ Government collects accurate data as no accurate planning and future forecasting for equitable access to everyday things in society like education, employment, housing, health care can occur.
As an association, what kind of help have you people provided to those with Down Syndrome and their families?
Since 1981 the NZDSA’s mission has been to support, inform and advocate alongside people with Down syndrome, families, whanau and professionals.
We provide support, information and advocacy from expectant parents wanting information about Down syndrome and connecting to a support parent to issues on milestones from birth to ageing.
The NZDSA also produces resources, hosts education workshops, offers opportunities to create support networks, hosts online social gatherings, distributes a quarterly journal - CHAT 21 - and e-news. The NZDSA believes that systemic advocacy is crucial to influence policy changes so that all people with Down syndrome can access their right to full inclusion in society.
Is there a stigma that one comes across regarding Down Syndrome? What are you people doing to address it?
The biggest stigma is people believing myths about Down Syndrome instead of questioning their own biases or prejudices. The NZDSA has ongoing campaigns, including World Down Syndrome Day and World Down Syndrome Month, celebrated in October, to address these myths and raise awareness of the lived experience of people with Down syndrome. Another myth is that all people with Down Syndrome are the same, but just as you and I[N1] , all people with Down Syndrome are unique and have their interests, skills, and abilities. Like you and I, they have the same desire to be valued, respected, [N2] contribute, and fully participate in society. [N3]
What would be your message to those who have new-borns diagnosed with Down Syndrome?
The NZDSA established STRIVE, a leadership and advisory group for people with Down syndrome, and as leadership[N4] members in this group was asked what message they would give to parents who have newborns with Down Syndrome. And they said “Congratulations” and “Welcome to the baby with Down Syndrome”. The NZDSA has also produced a digital resource, Couch Conversations with Parents, which is available on our website, and the parents interviewed would echo the Congratulations message. The NZDSA encourages expectant, new parents and whanau to contact us neo@nzdsa.org.nz or 0800 6893 724 so we can provide them with information and connect them to a welcoming and supportive community.
Have you seen people's perceptions changing about Down Syndrome in NZ?Inclusion changes perception! If more people with Down Syndrome are included at schools, in workplaces, in sports, arts, policy and political platforms, in their communities and in all aspects of society, then the wider community will have opportunities to meet and engage with people with Down Syndrome, and this is how you change the bias and preconceived views and myths that many people may have held about people with Down Syndrome.
Over the past 40 years, we have seen perceptions change firstly with parents and allies advocating for deinstitutionalisation and, more recently, the ratification of the UN Convention on the Rights of Persons with Disabilities people with Down Syndrome, which enshrines in law their right to full citizenship. However, to ensure full participation in society, we need greater awareness and acceptance of people with Down Syndrome and the commitment to dismantle the barriers that prevent people with Down Syndrome from having equitable access to their full citizenship rights.
Do you believe there is lots to be done in regard to creating awareness and acceptance of those with Down Syndrome by the wider society?
By signing the UN Convention on the Rights of Persons with Disabilities (UNCRPD), NZ has obligations to uphold the intent of the UNCRPD, but this has not translated into full community participation or the privileges and rights other Kiwi citizens may take for granted. So as a society, we all have a role to play to create greater awareness of the right of all people with Down Syndrome to have equitable access to be fully included in society.
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