World Down Syndrome Day 2021 - past, present, and future

2021 doesn’t look the way any of us expected it to back in the far distant past of 18 months ago, but it’s a big one for the Down syndrome community nonetheless. Every year, World Down Syndrome Day (WDSD) is celebrated on 21 March. Why that particular date? Because Down syndrome is caused by having a third copy of the 21st chromosome. 21.3 – get it? I love genetics puns. And that’s the same reason why 2021 is so special for UpsideDowns and our families. Despite everything, we can’t possibly let World Down Syndrome Day 2021 go by uncelebrated, and that’s why we’re in a team of 100 people virtually running, walking, and swimming around Aotearoa.

We’re certainly not the only ones though, and in this blog post, I want to share some of the background of the day, and have a quick look at how it’s celebrated around the world.

History

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. You could argue that the first pubic 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 3, 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 WHO came to recognise the date in 2007. A WDSD website was created in 2006 on behalf of DSi, which made it easier for DSAs around the world to see what each other were up to. It was this collaboration, predominantly led by the DSAs of Brazil 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 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 3 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 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. See, genetic science can be loads of fun! 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 this will be the year?)

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.

Every year in Pakistan, the Karachi Down Syndrome Programme hold a large carnival showcasing the talents of people in the area with Down syndrome, and 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!

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 are going to look a little different in 2021. Here in New Zealand, the four-level alert system we’ve been using to contain Covid-19 was announced on WDSD 2020 itself, cancelling any events that hadn’t already been abandoned at that point.

Here at UpsideDowns, we’ve decided that social distancing doesn’t mean we can’t all get active together for a good cause. A team of 100 runners, swimmers, and walkers, are journeying virtually around the whole country, posting their distances to our virtual mission platform to collectively move the pin around the whole of Aotearoa, from Cape Reinga to Stewart Island and back again! As with many charities, we rely on fundraising events for a substantial part of our income, and we haven’t been able to hold any for over a year now. We’re calling this journey Up and Down Aotearoa 2021, and at time of writing, we’ve raised an estimated $7,000! Check out our progress by clicking below.

As participants reach certain key parts of the country, they unlock video milestones from our supporters. You can check these out as they become available by clicking the button below.

Elsewhere in New Zealand, NZDSA are hosting the Big Connect – ‘the biggest Down syndrome video call in New Zealand history’; Auckland DSA are holding an online celebration throughout the day, and in less lockdown-prone parts of the county, they’re embracing the Ministry of Health’s guidance that outdoor events are safer. In Wellington, WDSA are holding an outdoor Garden Buy Swap Sell event, and Canterbury DSA are holding a family picnic on Quail Island. No doubt more events –virtual and otherwise – as well as plenty of social media interaction will emerge as the day approaches.

On a global level, the theme set for this year’s WDSD is Connect. It’s a theme that resonates strongly in a post-Covid world, and one which is also fitting for a community whose global interconnections have developed so well over the past decade. There will be a virtual Down syndrome conference in New York and one in Geneva, and people all over the world are taking up Down Syndrome International’s ’21 Day Challenge’ to do something – an activity, giving something up, sharing something – every day for the first 21 days in March.

So now that you know a little bit more about why 21.3.21 is extra special – what will you do to celebrate?