Learn Opinion Real Lives

DanceSyndrome; enabling diversity and leadership to flourish

Sue & Jen Blackwell

Jen’s success story is inseparable from DanceSyndrome.  At 18, Jen, like so many others got lost in the system.  ‘Personalisation’ was in vogue but no matter how clearly or how often Jen stated her wishes for her life, she wasn’t ‘heard’.  Aged 28, she escaped!

My cultural norm has always resonated to equality of opportunity, inclusion in society, respect for each other, rights and responsibilities always existing hand in hand, marks for effort not achievement.  As parents we have the same aspirations for both of our children.

Jen is our daughter.  Dance Leader, Co-Founder and Director of DanceSyndrome, winner of numerous regional and national awards including Prime Minister Points of Light 2018, Shaw Trust Disability Power100 2018,2019,2020.  Perfectly possible but totally improbable as Jen has Down’s syndrome.

Anthony is our son. Successful entrepreneurial businessman currently heading up Technical Services for Liberty Engineering.

DanceSyndrome demonstrates how a fundamental ethos of equality and inclusion enables diversity and leadership to flourish.  In this environment 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.

When systemic within an organisation, embedded in custom and practice, diversity and leadership at all levels is natural, normalised.

Aged 21 Jen coined: “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”.

To follow her dreams Jen needed appropriate accessible training offering continuity and work experience where she was wanted and valued.  For the first time ever, aged 28, DanceSyndrome empowered Jen to take control of her life.  She could choose the dancers she wanted to work with, both with and without disabilities.

11 years later many other dancers and participants experience similar joy at DanceSyndrome where palpable passion and effervescence overflows, even in Lockdown 3.

Here dancers Jodie and Anna, together with Jodie’s mum Ann, tell us what DanceSyndrome means to them

Tony can you make Ann (Jodie) and Anna’s words in different colours so responses are easy to identify?

Ann: ‘My daughter Jodie came to DanceSyndrome in 2014 having just left College. She completed her DancebyExample training and co-presents a weekly dance workshop alongside a dance artist. This challenge has hugely boosted her confidence and self-esteem.

Jodie has severe physical disabilities but has been so totally included in DanceSyndrome.  All movement is beautiful and even moreso when it is so challenging and is achieved even with the aid of others or by movements of a wheelchair.

Anna: At my core is the pure joy you feel when you dance with people who share the same passion.  Everyone should have access to this.

Jodie was so welcoming and we clicked straight away, maybe because of our love of musicals, pop songs and of course dancing!

Over the years I have developed my skills as a dance artist and have some of the best experiences in my career including performing at the Edinburgh Fringe. DanceSyndrome have supported me in many ways, providing training, paid contracts and so many skills in delivering.

Opportunities abound for all dancers with and without learning disabilities, including speaking, performing, work experience, co-leading or participating in workshops, devising, co-choreography supported by ‘Let’s do it’ attitude across DanceSyndrome.

Even when we have our planning sessions we have a laugh and bit of a catch up. We’re just having fun.  I get to work with someone I class as a close friend, have fun and do work together.  It’s pretty much fantastic.  It’s the best job!’

Arts Council funded Co-collaboration Project 2019/20

Anna: ‘We wanted to do a piece about flying.  I would never have thought about getting trampolines on stage.  I’m really thankful that Jodie comes up with these fantastic fun ideas that allow me then to explore them further and get nice and creative.’

Ann: ‘This was an amazing opportunity which both Anna and Jodie embraced with a complete share and much discussion of the project. Jodie has no speech and uses a high-tech communication aid.  Together they’ve developed effective ways of making Jodie’s voice heard. Mutual respect and empowerment affords both dancers the right to have a voice, be equally valued.

With her limited movement, Jodie loves seeing her instructions being followed and interpreted to suit different abilities.

Jodie’s favourite is performing on stage and seeing the reactions of the audience, and the joy it brings to others. DanceSyndrome allows her to express herself not with speech but through dance.

DanceSyndrome has done such a lot for Jodie, it’s just been amazing.’

Final word to Jodie.  On leading zoom ‘Very very very WOW!’


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.

Please check out DanceSyndrome – YouTube for inspiration, Events | DanceSyndrome for participation opportunities.



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