Jen: Living the most extraordinary, 'normal' life

Featured article - 25 November 2020
By Sue Blackwell, Chair of DanceSyndrome, on behalf of her daughter, Jen

Sue Blackwell, Chair, DanceSyndrome

Jen was written off at birth by the medics. She wasn’t valued. From the off she was a ‘problem’, a basket of ‘needs’, a ‘cost’. Her identity was ‘learning disabled’. Negativity is draining and demanding for any of us but imagine the huge almost unimaginable, often unmanageable impact on the person concerned. So many have traditionally been denied a positive self-image because they have ‘additional needs’, as if that in itself isn’t enough to cope with.

But for us Jen was our daughter, our firstborn. Jen was both ‘wanted’ and ‘loved’. Jen is, and always has been a ‘dancer’. Now, having kept the faith and actively ‘listened’ to Jen for almost 40 years, Jen is thriving. She is living the most extraordinary ‘normal’ life. Only yesterday Jen told us: "I’m in demand! Guess what arrived on Saturday? Do you know the EVAs, the EVA Stars? The certificate arrived on Saturday. It’s on my mantelpiece!" The EVAs are open to anyone in the North West of England and Jen won the award on a level playing field.

Jen’s identity, belief in herself, confidence are empowered through dance. Jen revels in living in her own home, being wanted and valued for the person she is. She has become a respected dance leader; she is Co-Founder of DanceSyndrome – a dance company that's now a multi award-winning charity, transforming lives through dance. She's a Creative Director, inspirational business woman, multiple award winner, friend, flautist, a person who embraces others for who they are and someone who spreads sunshine in her wake.

I am proud to be Jen’s mum. Jen is trailblazing towards better futures for all, a society where everyone garners mutual support to be their own person, contribute to society, become the best that they can be; and in turn to experience greater happiness, fulfilment and opportunities in their lives. At DanceSyndrome everyone is a winner. Everyone benefits through contributing what they can, taking what they need, learning from and supporting each other; growing together. This is my idea of ‘community’. A place where every person matters, every life is enhanced, where health and wellbeing spreads as if by magic.

There is energy, passion and motivation in abundance in the dancing family where dancers become carers and carers become dancers, and guess what? Seen by some as the best outcome of all, it presents a low cost transferable model to the care conundrum for organisations that commission and run services.

Jen says: "I live for dance. It’s my passion and my life. I have the right to a life of my choosing. I want to get the world dancing". DanceSyndrome is actively spreading the word.

About DanceSyndrome

DanceSyndrome is learning disability led, and we’re zooming! During the pandemic people with learning disabilities have been disproportionately impacted in terms of mental and physical health, isolation, and stigma. Our programme of inclusive dance workshops, dance leadership training, university seminars, inclusion training, performances and volunteering opportunities help to address health inequalities, restore community connections, reduce isolation, challenge stigma, improve employment opportunities, and transform lives. Our unique co-production model with everything designed and delivered by teams comprising at least 50% people with a learning disability ensures genuine inclusion, aspirational real-life role models, and that we work together to create positive change in the health and wellbeing of individuals and communities.

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