Amy Rutland: World Down Syndrome Day – inclusion, empowerment and my amazing sister Lucy

Lucy rocks her extra chromosome

World Down Syndrome Day (WDSD) is an annual March 21 celebration and global awareness day officially observed by the United Nations since 2012. March 21 (21/3) was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down Syndrome.

NHS worker and East Kent Mencap director and chairperson Amy Rutland, 32, from Westbrook, has written about her younger sister Lucy who has Downs Syndrome, the importance of inclusivity and the amazing person her sibling is.

Lucy, 29, who lives with parents Sheila and Jez a few doors down from Amy, is involved in numerous groups and activities and in 2020 became the first girl guide in Kent to receive an “I stand out” award from the Girl Guiding County Commissioner.

Lucy receiving her award

Amy writes:

Today is World Down Syndrome Day. The 21 March is chosen to be the international date because it represents the extra chromosome found in the DNA of people who have Down Syndrome (an extra, third version of chromosome 21 to be precise).

This year, the theme for the day is all about inclusion and what it means to me, you and everyone else –

For me, inclusion means not treating my sister any different in to someone else, especially in social situations. She comes to the pub with me and my friends and up the shops. Growing up as a teenager, if I was heading to the park – she’d be with us, joining in the jokes and games.

Being so inclusive and treating her as ordinary as possible, she is now a very funny young lady – who can give banter and take it, and will happily take the mick out of you in a fun and loving way – it can be a real shock to people sometimes that she has a wicked sense of humour.

As with most things, raising awareness and having a personal connection to something is the first step to changing a stigma and making something less different and more ordinary. That’s I will never stop shouting about my amazing sister and everything she does and can do. Embracing inclusion is at the heart of making a difference.

There is a Bill about to reach second reading in the House of Lords very soon, one step closer to getting royal assent and becoming law; which will be putting inclusion and awareness of Down Syndrome at the heart of what it aims to achieve – better opportunities for people with Down Syndrome, better inclusion and empowerment for people with Down Syndrome at a younger age and better outcomes from our systems for people with Down Syndrome. You can read about the Bill here –

Embracing a person who has Down Syndrome as a person and not a condition is key to this. Every single one of us, disability or not, can do different things and just because someone might have Down Syndrome, doesn’t mean they can’t achieve what they want to, be who they want to be or crack a hilarious joke and sit you in your place, like Lucy often does.

Lucy is hilarious, caring, kind hearted, passionate about what she loves, sarcastic as hell and rocks her extra chromosome.

Now, I’ve said what inclusion means to me – what does it mean to you?


  1. Excellent article and Lucy puts across brilliant points. As I’ve stated in another article today. We need to do a lot to raise awareness in areas like this.

  2. After when I was born, my parents did not know that I have Downs Syndrome. I had a lot of physio and speech therapy, which took a long time for me to understand. I feel proud and it was a bit scary at first, but I do know this is life. And any parent should feel proud of their children that we are not normal to the other people. We are the angels in the making.

Comments are closed.