Sue and Jen Blackwell

Sue and Jen BlackwellWorld Down’s Syndrome Day and Down’s Syndrome Awareness Week are always celebrated enthusiastically by all at DanceSyndrome as we see on a daily basis how important inclusion is and how much people with Down’s syndrome can contribute to society when given a chance. Now this wonderful celebration is over for another year, DanceSyndrome Chairperson Sue Blackwell has written a blog reflecting on the success of the week. Sue is also our Founder Jen’s mum so, as a parent of a person with Down’s syndrome, she has a lot to add to the conversation around inclusion. Here are Sue’s thoughts…



At the end of Down’s Syndrome Awareness Week 2022
When the everyday is extraordinary, it’s all too easy to forget…
• Where we’ve come from
• The numerous challenges we’ve faced over 40 years
• The enormity of the opportunity that is DanceSyndrome for dancers, society, people with and without learning disabilities, everyone interested in health and wellbeing, a fair and equitable society.


Witnessing people with Down’s syndrome empowered through dance is illuminating. Their talents, enthusiasm, happiness and joy can light up a space whether large or small. People like me, with no discernible disability but 2 left feet, are encouraged and inspired to join in, to discover wellness through movement. However reticent, however intimidated, inept or incapable we feel, leaders with Down’s syndrome can conquer our inhibitions and persuade us to ‘give it a go’.


It all began with the birth of Jen 40 years ago. She was met with gloom and doom from the medics. As a family we were traumatised by the many negative experiences in those early years, but ever determined to make the best of it that we could, we chose our own path through life based initially on personal research, and over the years, more often on gut instincts and empirical evidence. Jen’s passage through mainstream education wasn’t always plain sailing but with support and encouragement she left at 18 with big aspirations – to be a leader, to share her love of dance, to get the world dancing.


But how? Where was the training appropriate for her? For 10 years we searched together to find places, people, courses, opportunities to meet her needs.


Born out of frustration we set up DanceSyndrome, a space and place where Jen was in control. And something extraordinary happened. We discovered lots more people like Jen, some had Down’s syndrome, others had other learning disabilities, but all were focused on careers and lives in dance – performing, choreographing, leading, inspiring, working inclusively and professionally alongside dancers without disabilities as equals. This is where the magic lies.



When people are listened to, taken seriously, valued, they develop their own identity. They are empowered, they glow ever more brightly from within becoming more confident, more self-assured more assertive. They become their own person. This is true of everyone but so rarely seen in people with Down’s syndrome. But once witnessed you cannot ignore, you cannot turn your back as you watch the power of dance impact lives all too often disregarded, put out of sight and out of mind, confined to the dump, marginalised, ignored and conveniently forgotten.


Through the vehicle of dance people with Down’s syndrome can leave the rest of us standing, feeling wanting, lacking, humbled, as we watch these invisible giants inspire, hold their heads up high, walk tall, lead from the front, be held in high regard as leaders in their field, win numerous prestigious awards and accolades, achieve ever dizzier heights.


This is DanceSyndrome. This is the world I choose to inhabit, a world where every person matters.




If you too aspire to a more civil society, let me lead you to DanceSyndrome where greater happiness, health and wellbeing are afforded to all through mutual respect, philanthropy and effort.


This is DanceSyndrome. This is the world I choose to inhabit. This can be your world too.


If you’re inspired by Sue’s thoughts, and our work during Down’s Syndrome Awareness Week, and would like to support our work, we are always looking for volunteer fundraisers to support our work. You can contact our team on to talk about how to get started. If you would prefer to support us with a donation, you can use the form below to donate directly to our work.

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