I’m honoured and astounded to have been shortlisted for the Northern Power Women Awards, Disruptor for Good. It seems unbelievable to be recognised for doing something that has simply been part of who I am, and who we are as the Blackwell family.

When I gave birth to Jen, after a textbook pregnancy, it seems that I became a disruptor for good, not that I knew it at the time. 5 hours into becoming parents for the first time, we were labelled as a disabled family. Malcolm and I were told that Jen wouldn’t amount to much and it would be best to put her in a home and forget about her.

It’s only recently that I’ve recognised how Jen has been my best teacher. Malcolm helped me turn the corner from my natural introverted self, but it was Jen who required me to step up.  If she wasn’t going to be able to be assertive for herself, she needed us to advocate for her. With Malcolm’s job taking him around the world, often at a moment’s notice, it was me that had to take the lead to ensure Jen was always seen for the unique person she is.

Throughout Jen’s life we’ve always asked questions and challenged professionals and systems which seemed to be against our simple ambition as parents, for Jen to be included and accepted in society as the unique individual she is. We supported Jen through mainstream school, despite receiving advice from ‘professionals’ to the contrary. At the age of 18 Jen being deemed an adult, the system no longer offered her the support she previously had access to. It took us ten years searching for the right opportunities and support, challenging the status quo to enable Jen to do what she wanted – to dance and feel she mattered. It was truly heartbreaking, when we knew that Jen wasn’t the only one being let down by systems and society.

As parents, we’ve always had the same aspirations for both our children – to be able to pursue their dreams and have equality of opportunity to live the life of their choosing, no matter what their perceived ability or disability is to the outside world.

After ten years of searching, travelling the country and spending time with different organisations, it was time to do things differently.

DanceSyndrome was born in Jen’s bedroom in 2009, with the help of her personal support team. It was only then, at the age of 28 that we discovered how to bring Jen’s dream to life.

That first group of 14 dancers, 7 with disabilities and 7 without, created the foundation of the unique approach and methodology that has made DanceSyndrome a multi-award winning organization which now touches the lives of over 3000 people a year.

DanceSyndrome has given Jen the opportunity to dance, develop herself, lead her life and discover true friendships for the very first time in her life. DanceSyndrome offers a space where each person is valued for who they are, encouraging their individual voices to be shared, in whatever way is right for them.

To start with, the impact was personal – helping Jen be herself in a society that chose to hide people with learning disabilities away. Jen developed her dance skills and was with groups of people who wanted to dance and be active members of society, having fun with others. We found a way for Jen to live her life in the way that she wanted, encompassing all her passions, talents and hobbies, not how society prescribed it should be.

Learning Disability and Autism Awards 2019

As DanceSyndrome grew, so did the impact. Not only was Jen creating real friendships and being valued for who she was, others with and without learning disabilities were too. Jen says, “I live for dance. It’s my passion and my life. I have the right to a life of my choosing.”

Our ethos for life is based around our view that, why shouldn’t Jen have the same opportunities to be herself and share her love and talents with others? Why shouldn’t Jen, just because she has Down’s syndrome follow her dreams of being a dance leader in her community?

Why shouldn’t Jen, and people with learning disabilities not have access to support and encouragement to lead a life of their choosing and do what brings them joy in their lives?

That’s how we measure impact – not on the numbers of people who are benefitting from the organisation in the weekly community dance sessions, or the number of people completing the unique Dance by Example training each year, but on the impact on society of seeing people who may look or act differently to themselves being recognised for what they can achieve when given the right support.

Jen and DanceSyndrome have won many awards including the Queen’s Award for Voluntary Service in 2019. Jen was awarded with the British Empire Medal for services to Disabled People last summer, showing what’s possible in a world where people with learning disabilities are still not generally seen or heard in the media and in the workplace. It seems that the whole team continually showcase innovative solutions and remove barriers allowing parents, carers, users and those who come into contact with DanceSyndrome to think differently.

More role models are being seen in their communities as people with and without disabilities work together. They co-lead dance sessions, speak up at events and share their stories with politicians and leaders of health care. DanceSyndrome is enabling people with learning disabilities to be empowered, seen, acknowledged, supported, to be themselves and feel joy and excitement about being alive.

People are developing confidence, belief in themselves in all parts of their lives. They’re delivering performances, workshops, keynote or breakout conference sessions, mass participation, community events, university seminars, staff training at schools & colleges.

They have better mental and physical health, a reason to get up in the morning and friendships that didn’t exist before.

‘The biggest reward for me is seeing people grow. The changes I’ve witnessed in each dancer are huge. They are confident individuals. They’ve got their own voices. They’ve got their own opinions & they’re not afraid to express them. The scale of the transformation can’t really be put into words.’ Artistic Director.

At DanceSyndrome diversity is the norm, inclusion is their bedrock. There are no barriers, hurdles to clear or glass ceilings to break through – everybody matters and has something to offer to the conversation, the creative dance, the growth of the organization.

We are continuing to challenge and change perceptions of what’s possible for people with a learning disability. We want every

Jen and Sue Blackwell, Charity Champions, Best Businesswomen Awards 2022

person to believe in the possibility of creating a different society where every person matters, no matter who they are, what they look like or what their perceived abilities are. We want everyone to believe they can contribute with joy in their life, to their family and community.

With this shortlisting we hope that more people will join us in creating the change that we know impacts many families and communities and our society. It’s an honour to have this opportunity to share our vision with a wider audience.

If you’re ready to join us as we challenge perceptions and get people to think differently about what’s possible for people with learning disabilities, please leave a comment below, or get in touch. We value your support. Thank you.

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We’re delighted that DanceSyndrome has also been shortlisted for an award in the Northern Power Women Awards, recognised in the Inclusive Innovation category. We know that every fibre of DanceSyndrome evokes and inspires inclusivity so we’re delighted the charity has been recognised in this way in this prestigious awards.

Some photographs included by kind permission of DanceSyndrome