Getting the world ready for my sister.

21st March 2018
World Down’s Syndrome Day 2018 - my sister - the sussex girl

My younger sister started her first job a few weeks ago. She’s working in a café one day a week around her college course which is three days a week. We were texting just the other day about one of her college projects, she was putting together a presentation about London and had picked out a few things she particularly wants to do so we are planning a girls weekend, just the two of us. I’m leaving the itinerary to her. This all sounds quite normal for a 19 year old girl, yes?


I’m 28 and a typical big sister. No longer considered ‘cool’ (something to do with the fact that I verge on embarrassing due to my habit of singing along to music in public), I am at the end of a phone when she wants to text. I worry if she’s happy, healthy and enjoying college. I wonder how I can help her find a job that she loves. I ask her about friends, boys, music. I worry that she is vulnerable and wonder how I can protect her in the future. Fairly normal for a big sister, yes?


Except some people look in and see a different situation. They see a girl who is younger than 19 and siblings that will end up carers. They see someone who shouldn’t have a voice and a family who must feel burdened. ‘It’s not like that’ I want to shout.

My little sister isn’t so little anymore. She’s a young woman, beginning her adult life and that scares me more than anything. Not because she isn’t ready to but because the world isn’t ready for her.

Alice is 19, she’s full of humour, a great drummer, a loving Aunty, a compassionate friend, has a strong and real faith, a love of music and a minor chocolate addiction. Alice also has Down’s Syndrome.

We live in a society that purports to be more inclusive than ever before, we have equality and discrimination laws, we have accessibility policies, yet I still desperately want to wrap her in cotton wool and protect her from an unkind world. You see, we can have policies and laws by the bucket load to force inclusion but there can still be something critical missing.

We live in a society that hasn’t yet fully grasped the value and contribution of anyone who is labelled as different. We can purport to be wholly inclusive and accessible yet you still get people who speak over the head of someone with a visible disability, who avoid interactions when they see someone different from themselves, who try to pay people with disabilities less, who take advantage of the vulnerable, who deem people as a ‘hassle’ and not an asset.

Alice processes the world in a different way to me, but that doesn’t make me smarter than her. She notices colours and patterns in a way that I miss. She sees hurt in the eyes of people when I believe the ‘I’m well thanks’. Alice might not answer you right away but that doesn’t mean she didn’t understand you, she is just finding the words to answer your question fully unlike when I reply too quickly because I stopped listening when I decided that I knew what you were asking and don’t even really answer the question. Alice can identify a song in a few beats and can tell you who the artist is whereas I struggle to even remember the words. Alice will patiently sit and read story after story with her nephews, when I have already moved on to something else. Alice will follow your instructions to the letter if you’ll just take the time to explain in a way that she understands, unlike when you explain to me and I forget a step or start doing it in my way instead. Now who would you rather employ?

There is so much that I have yet to learn about my younger sister (she doesn’t like being called little any more!). I have so much to learn about the world around us. She has so much to teach us, if she is simply allowed to try. I want the best of everything for her as my heart breaks at the thought of her not reaching her potential fully. She will never be a burden and certainly does have a voice that we want to encourage to speak out.

So please don’t mind me when I get angry about unfairness, about discrimination or prejudice. Don’t mind me when I hop up and down about employers adapting the workplace for workers with disabilities. Don’t mind me when I lobby for better support for adults with learning disabilities that helps them fully access opportunities in their community. Don’t mind me when I advocate for better information to be provided to new parents of babies with Down’s Syndrome. Don’t mind me when I get excited about companies creating great resources that are for those who learn differently.

I’ve just got to get the world ready for my sister.

Can you help?

#wdsd2018 #worlddownsyndromeday2018

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