Earlier today, the United Nations hosted the first ever World Down Syndrome Day assembly, which bought together self-advocates with Down’s syndrome and learning disabilities from around the world.
The meeting focused on the importance of easy-to-understand communication. Nathan Rowe, Programme Director at Down Syndrome International (DSi), chaired the meeting alongside Pearl Luethy, a self-advocate from Switzerland.
They said: “Easy-to-understand communication means that we can access and understand what is being shared. This is the law, which that means information needs to be simple enough for all of us to understand.
“It means we can all take part and have our say. It means that we will be not be left behind because we can understand things, and we’ll be able to keep up with everyone else in our communities, giving us more of an opportunity to be included.”
The United Nations recently passed a resolution about easy-to-understand communication, which means that all countries in the UN have agreed to publish information in an easy-to-understand format.
In light of this new resolution, DSi and Inclusion International (the two main global networks that represent people with Down’s Syndrome and intellectual disabilities) have created guidelines called Listen Include Respect.
More than 1,500 people with learning disabilities and their families from almost 100 countries helped to write the Listen Include Respect guidelines.
The guidelines help organisations understand what they need to do to make sure people with learning disabilities are included in their work, whether that be as employees, service users, volunteers, board or committee members, or as people involved in projects.
They are designed to enable people with disabilities to “meaningfully participate”, meaning everyone with a learning disability can be fully included, participate equally and feel valued.
There are how-to guides on planning inclusive meetings, hiring staff with intellectual disabilities and communicating in an accessible way. All the information is based on what self-advocates have said they think should happen.
Mr Rowe said: “Using easy to understand communication will help people from different countries be in line with the UN Convention and achieve their sustainable development goals, and it will help the United Nations implement its disability inclusion strategy.”
“Most of all, it will mean people like us, with Down’s syndrome, can be included and be active in our own development within the community,” Ms Luethy added.
World Down Syndrome Day is an internationally recognised day which has been officially observed by the United Nations since 2012.
It is celebrated on the 21st day of the third month to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down’s syndrome.
This year, the UN want to promote a human rights-based approach to disability, and the theme is ‘With Us Not For Us’. This message promotes the idea that people with disabilities have the right to be treated fairly and have the same opportunities as everyone else.
The UN wants to see organisations work with people with learning disabilities to improve their lives, rather than making decisions on their behalf, without consultation.
DSi states: “The United Nations Convention on the Rights of Persons with Disabilities calls for full and effective participation of persons with disabilities, but many organisations exclude people with Down syndrome from taking part in their work. They take decisions For them not With them.
“Our global network calls for all decision makers to commit to involve organisations representing people with Down syndrome in all decisions, and work With Us Not For Us.”
To build awareness of World Down Syndrome Day, DSi launched the Lots of Socks campaign. The campaign asks people to wear their loudest, most colourful socks on 21 March in order to start a conversation about Down’s syndrome.
This year, the learning disability charity Mencap has partnered with Stand Out Socks, the only British sock company with a co-founder who has a learning disability.
Christian Liang founded the company with his brother Ross, who has Down’s syndrome, in 2021 after realising that creating the company would not over give Ross a job, but would also raise more awareness of Down’s syndrome.
As the official sock partner for Mencap’s Rock Your Socks campaign, Ross has chosen two fantastically bright and colourful designs, Clouds and Top of the Socks, to raise vital funds for the charity. From each sale, £3.21 per adult sock and 50p per child sock will be donated to Mencap.
The 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.
“Partnering with a charity that shares so many of our values this World Down Syndrome Day is an absolute honour for us both. We can’t wait to see everybody ”Standing Out” in our socks and celebrating a very special day for the Down’s syndrome community.”
