World Down Syndrome Day: With us not for us

This World Down Syndrome Day, it’s time to celebrate people with Down’s syndrome and include them in conversations about their future.

On 21 March, people around the world will come together to mark an important event, bringing awareness and change to the lives of approximately 47,000 people in the UK. World Down Syndrome Day (WDSD) gives this opportunity each year, with the 21st day of the third month selected to signify the trisomy: the extra copy of chromosome 21 that people with Down’s syndrome have. 

Our voice

In the lead up to the day, and all year-round, members of the Down’s Syndrome Association’s (DSA) Our Voice group are collaborating to create positive change. The group is made up of people with Down’s syndrome who work as part of the organisation, meeting each week to discuss important topics and to co-produce projects together. 

Aimee and Angus are part of the Our Voice group and are ready to see people with Down’s syndrome celebrated and included. Aimee has two volunteering jobs with organisations focussed on saving the planet, and Angus works with The Developer Society and is an actor. 

“There’s a lot of encouragement in Our Voice,” enthuses Angus. “It’s good when other people bring their projects to get involved in and learn how to talk to you. One topic we’ve talked about is mental health for the NHS.” 

As WDSD approaches, Aimee told us what it means to her, she says: “It’s good to celebrate the people who have Down’s syndrome. For example, everyone involved with the DSA.” 

With us not for us

A huge part of the day is to advocate for the rights of people with Down’s syndrome, and this year’s theme aims to highlight this fight. On 21 March, people with Down’s syndrome will ask the public and organisations around the world to stand With Us Not For Us. The theme recognises the need for a human rights-based approach to disability, with the view that disabled people have to be treated fairly and given the same opportunities as anyone else. 

“It’s good to speak up. We have the right to say no,” explains Aimee. “We have the power!” 

This theme also highlights that everyone’s needs, likes and dislikes are unique to them. 

“Everyone who has Down’s syndrome is different,” emphasises Aimee. “Some people use a wheelchair, or have hearing loss, or can’t see as well. Different people have different needs. I have a green band so that people know I have a learning disability when we go to the airport – it means we can skip the queue. 

“It would be good if everyone everywhere knew about Down’s syndrome. I have trouble seeing small writing. In the world it would be useful to have bigger writing, for example for ingredients or in books.” 

For Angus, the meaning behind this theme focusses on inclusion and visibility. 

“People who have Down’s syndrome should be more confident and more visible,” he explains.  “This [theme] means trying to get people talking about it. You should ask questions to people who have Down’s syndrome.” 

Angus hopes that more awareness and change could create better chances to socialise and make friends, and that people are given opportunities that fit their individual needs. 

The impact of this day will be long-lasting, starting conversations around the world, but the hope is that this chance to celebrate and become informed means a better future for people with Down’s syndrome everywhere. 

“It’s down to us to make the future. [To] make our own future,” adds Aimee. 

Rock Your Socks

Anyone can help mark WDSD by sporting a colourful everyday item: socks. The underwear has become a global symbol for Down’s syndrome. The condition is caused by an extra copy of chromosome 21 in someone’s DNA, and when you look closely, chromosomes are shaped like tiny socks. Each year, the Rock Your Socks campaign from Mencap (www.mencap.org.uk), the UK’s learning disability charity, takes place to mark WDSD. 

This year, the charity has partnered with British company Stand Out Socks to encourage people to wear their funkiest pair and celebrate people with Down’s syndrome. The company was inspired by Ross Laing who has Down’s syndrome. Like many people, Ross struggled to find work and so his big brother, Christian, wanted to create a company where he could be an integral part of the business. After Ross wore a pair of bright socks to celebrate Down Syndrome Awareness Month in October 2021, the idea came to fruition. 

To mark WDSD, Ross has chosen two colourful designs to raise vital funds for Mencap, with £3.21 per adult sock and 50p per child sock donated. Speaking about the importance of the day, the two brothers said: “We believe that Down’s syndrome and other disabilities should be celebrated. People with Down’s syndrome have varied abilities, but, like everyone, they also have their own personalities, things they like and dislike, things that make them who they are! 

“We want to raise awareness and spread the word of disability inclusion so others can be accepted and included for who they are.” 

Learn more about World Down Syndrome Day from the dedicated website (www.worlddownsyndromeday.org) and from the Down’s Syndrome Association (www.downs-syndrome.org.uk). 


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