A brief history of World Down Syndrome Day

By Sarah Paterson-Hamlin

Ordinarily, this edition of CHAT21 would be packed full of images and stories from how World Down Syndrome Day (WDSD) was celebrated all over Aotearoa. Of course, once again things were a little different this year, and largely curtailed due to the Omicron outbreak, and the need to keep everyone but especially our immune-compromised loved ones safe. In place of this, we’ve put together a little potted history of the day and how it came to be that we celebrate together with communities all over the world on 21 March every year.

Origins It was at the UN General Assembly in December 2011 that World Down Syndrome Day was first formally declared as a global celebration, but groups around the world had been connecting on that date since at least 2006. Why 21 March? 21/3 represents three copies of chromosome 21 of course! And you can’t beat a good science pun in my view. You could argue that the first public celebrations of the Down syndrome community date back to the performances at Normansfield from 1879 onwards, where Langdon Down – the scientist whose name the English-speaking world attaches to the syndrome – and his wife, Mary, put on performances both for and including their charges. It’s hard to know for sure, but the French have a pretty good claim on having come up with the 21.3 thing. In English, Trisomy 21 is used to describe the most common form of Down syndrome, and doesn’t refer to Mosaic or Translocation Down syndrome, but in French, ‘trisomie 21’ describes all three, so it’s logical that the Francophone world were the first to hit on the 21st March date. L’ARFT (Association Française pour la Recherche sur le Trisomie 21 or French Association for Down Syndrome Research) organised a conference on that date in 2005. It was likely as a result of this that Down Syndrome International (DSi) chose that date as a focal point for their increasingly global activities, and how the World Health Organisation (WHO) came to recognise the date in 2007. A WDSD website was created in 2006 on behalf of DSi, which made it easier for Down Syndrome Associations (DSAs) around the world to see what each other were up to. It was this collaboration, predominantly led by the DSAs of Brazil

World Down Syndrome day celebrations in 2006

World Down Syndrome Day celebrated in Karachi

and Singapore, which enabled the UN Resolution to ultimately be introduced only a few years later. New Zealand was quick off the bat, and celebrated WDSD in Palmerston North at an afternoon tea hosted by the Mayor, Heather Tanquay. In keeping with the 21, 3 we invited 21 people for afternoon tea at 3pm. Then in 2007 in the company of the Governor-General and one of Queen Elizabeth II’s sons (we don’t have to dwell on which one). NZDSA organised the event, where three young New Zealanders were given awards before enjoying a very fancy high tea. From there we were off and rolling, and Kiwis have celebrated people with Down syndrome every March since then. Regional DSAs hold their own events, schools often hold mufti or theme days, NZDSA members from across the country get together on virtual projects, and many families take to social media to celebrate.

Celebrations around the world For our friends in the temperate sections of the Northern Hemisphere, odd socks are a great, simple, inclusive way to mark 21 March. Alongside the increasingly global use of #WDSD, you’re likely to see #LotsofSocks trending around this time. Why socks? Especially when for some of us it’s always going to be way too hot in mid-March for that kind of carry on? Basically because a chromosome is shaped roughly like a sock. As Down syndrome is all about having an extra chromosome (or sock) and the experience of having an extraneous/odd sock is fairly universal, wearing odd socks on World Down Syndrome Day is a fun and easy way to start a conversation with those around you who might want to find out more about the Down syndrome world. On a related note, the te reo Māori for Down syndrome is mate pūira kehe, which translates approximately to ‘condition of the odd-numbered chromosome’. Even before WDSD was official, groups around the world had been celebrating Buddy Walk – a concept originating in the USA, where people with Down syndrome and their supporters go on a fun walk/run, often accompanied by stalls and activities at the start or finish line, and raise funds and awareness. In the first year it was held, 1995, there were 17 walks held across the USA. By 2017, this had burgeoned to 250 events across the world, raising an estimated total of $14.2 million – that’s in US dollars! In most parts of the world, the nature of celebrations around WDSD varies each year, depending on which groups are taking charge and – I suspect – the amount of volunteer energy available in any given time and place. One thing that’s constant though, is that you’re never far from a celebration – no matter what continent you’re on! (Well, ok, I haven’t managed to

find any past events on Antarctica – but maybe 2023 will be the year?). Let’s take a tour of the continents

Africa In Liberia, Nigeria, Uganda, Tanzania, and many more places, local groups have created fun events like exhibition games, fun runs, and fairs designed as a meet and greet opportunity – dispelling negative stereotypes about people with Down syndrome by encouraging people to get to know the individuals behind the label.

Asia Every year in Pakistan, the Karachi Down Syndrome Programme holds a large carnival showcasing the talents of people in the area with Down syndrome, which is often accompanied by a significant advertising campaign promoting inclusion and awareness. With each passing year, the carnival attracts more and more attendees and significant public figures as well as increasing media coverage. Singapore has a particularly extensive collection of annual fixtures around WDSD, engaging corporates with their Charity Bowl tournament, school kids with a Charity Movie Night, and everyone else with a Buddy Walk and a Gala Dinner – all held every March!

Europe The well-caffeinated citizens of Ireland tend to celebrate with coffee mornings in various parts of the country. Over the years they’ve held all kinds of creative events for WDSD, but coffee and cakes are a common denominator. Remember L’ARFT who came up with it all in the first place? They still hold a scientific conference every year around WDSD, attracting scientists, medical students and professionals, and philosophers from all over the world. These are just a handful of examples – honestly, the events and activities are endless!

Showing love in a time of COVID Inevitably, World Down Syndrome Day celebrations took a big hit in 2020 and 2021, and now 2022 as well. Here in New Zealand, the four-level alert system used to contain COVID-19 was announced on WDSD 2020 itself, cancelling any events that hadn’t already been abandoned at that point. By 2021, we were more prepared for the virtual. NZDSA hosted the Big Connect for the first time and replicated the success of that event in 2022. This year’s event featured the Honourable Carmel Sepuloni, Paula Tesoriero, Bridget Snedden, a host of other experts and some familiar faces from the community responding to the theme of this year’s WDSD: What does inclusion mean? The second part of the event split attendees into three break-out rooms: Education, Employment, and What do we want in the future? For the Education group, inclusion meant an overhaul of the current funding model, which gets whānau off on the wrong foot before schooling even begins. For the Employment group, inclusion meant a movement away from deficit-based models as well, educating employers and encouraging them to see abilities and potential. The group contemplating the future saw opportunities to change narratives, looking at what’s possible, to question our own attitudes, and the acknowledgement of the trailblazers who came before us. As we move forward from WDSD 2022, what does inclusion mean for you? How do you wish people included you and your situation better? How can you be more inclusive in your daily life? If you could design a perfect example of an inclusive society, community, school, workplace, family etc., what would it look like? Although COVID-19 has created barriers to so many parts of our lives, it has also led to some progress in inclusivity. How many meetings are now hybrid in-person and zoom sessions for example, enabling people who are unwell, living remotely, or without access to private transport to attend? How many workplaces are now enabling remote options, something advocates in the disabilities sector have been fighting for over decades? I’ll close with the words of Duncan Armstrong, a STRIVE self-advocate who left the Big Connect attendees with the following aspiration: “In the future, there won’t be a difference between a disabled and non-disabled person.”