World Down’s syndrome Day

March 21st 2025

Choice, Control Dignity.

Every year, on March 21st, the world celebrates people with Down’s syndrome and this year, the theme is around choice, control and dignity.

I want to share a celebratory piece as my head is still spinning from the ‘disabled people bashing’ we have witnessed recently. Whether it is the government cuts to welfare for disabled people, or the attacks on diversity, inclusion and equality in other countries, it has dominated the news for too long now. But I need to acknowledge some of the issues that people with Down’s syndrome continue to face.

For people with learning disabilities (which to some extent, all people with Down’s syndrome have) having a choice in what you do, control over what you do and living a dignified life, is often difficult to achieve. This is not because you don’t want these things, but because the systems set up to support you, don’t always allow this to happen.

This year, as my son turns 18, I’m thinking more and more about the failing systems around him and what we can do as parents/carers and allies, to support people with Down’s syndrome to have control and choice over what they do in their lives.

Harry wants to be a Bollywood dancer – it was evident from early childhood that he had a talent for dance – but to succeed in this, he will need support from not only his family, but the systems around him. And this is where the barriers go up.

Trying to secure a place in a residential college where he can study performing arts is proving incredibly difficult. He has made the choice to study this course and has been supported in choosing the setting. Yet he will have little control over whether the placement will be secured for him. The control lies in the hands of the local authorities and people who have never met him. This balance of power must shift. People with Down’s syndrome should be able to make choices and have their voices heard when others are making decisions about their lives.

This is why I support the message on World Down’s syndrome Day on March 21st.

In the meantime, we celebrate Harry’s achievements on this day and every day. His love of music – and playing it too loudly – is infectious. The moments of comedy/horror when he runs around the house wearing a scary mask and holding aloft a lightsabre, only to terrify you when he creeps up behind you. While I am stood screaming, he is laughing until he could burst! Hanging out with his friends at the local youth club and being given choices about what he wants to do while he’s there.

His inclusion is family events, dancing at a cousin’s wedding, doing the ‘hip hip hooray’s’ at every birthday party he attends, and his beautiful caring nature, always knowing when someone needs a hug. Watching his growing confidence in making choices about things, no matter how small they are. We celebrate all of this and more as he continues to bring joy, fun and laughter to our world. It is a better place with him in it.

I know that there continue to be inequalities faced by people with learning disabilities but hopefully, as we continue to see more people in our communities, living ordinary lives, society at large will begin to accept that Harry and his friends have the right to live in a world where they are respected and valued. My son will always need some support in his life (who doesn’t?) so let’s make sure we support him and his friends to make choices, have control and live in dignity.

Happy World Down’s syndrome Day!