Leaders with learning disabilities are out there

Julie Nicholson

Head of Partnerships & Programmes

26th August 2021



A decade ago, in my early days working at UnLtd, I proactively went out to meet as many social entrepreneurs as I could. Nearly all were just starting out with an idea and a dream to do something positive and impactful to benefit others who faced challenges and barriers in everyday life. Often these individuals experienced first-hand the problem they were trying to address.

One of the first social entrepreneurs I met, and with whom I immediately connected, was Jen Blackwell. I was blown away by her charisma, her passion and drive and can-do attitude for world domination. Jen dreamt of being a dancer and a dance leader, but after completing mainstream school, she found herself in the frustrating position of not being able to fulfil her ambitions. At the time there was no suitable dance training for a person with a learning disability. Oh, I forget to mention, Jen was born with Down's syndrome.

After 10 years of unsuccessfully searching for training that was appropriate and inclusive, where Jen felt wanted, it became clear that many others were in the same situation. Something needed to change. Jen and her parents, Sue and Malcolm Blackwell took matters into their own hands. Jen become the Founder and Creative Director of DanceSyndrome in 2009. She successfully applied for initial seed funding to get started, alongside UnLtd's bespoke wrap around support.

In my then role as mentoring co-ordinator, I organised several networking events in Manchester and invited Jen to attend. At one particular event in partnership with the Royal Society of Arts (RSA) at the Double Tree Hotel in Manchester, Jen spoke to an audience of around 60 people, and you could have heard a pin drop:

I set up DanceSyndrome with the support of my parents as I've always wanted to share my passion for dance with others and to get everybody dancing. I want to lead workshops and choreograph performances with other dancers.

Jen Blackwell, Co-founder & Queen of DanceSyndrome

To have the confidence and to be clear, articulate and engaging in front of a large number of people is no mean feat, let alone when you have a learning disability. Jen spoke from the heart and everyone in the room felt that. The event resulted in many offers of help and support to DanceSyndrome in developing their organisation, their strategy, and ultimately leading them to apply for charitable status.

I have followed and supported the DanceSyndrome journey over the last ten years. Sue and I have chatted every six months or so with me being a sounding board and offering informal advice and ideas. I have proudly watched the team grow, roll out a variety of community inclusive weekly dance sessions, develop a unique 'Dance by Example' Leadership Training Course aligned to Sports Leaders UK framework and perform all over the UK including at the Edinburgh Festival in 2017 and again in 2018 by invitation.

Jen, who has renamed herself 'The Queen of DanceSyndrome' has won a multitude of awards over the years, including a Points of Light Award from the Prime Minister, being included in the Shaw Trust Disability Power 100 list of influential people with a disability for three consecutive years and Inspirational Woman of the Year, Enterprise Vision Awards 2015. DanceSyndrome itself won the Queen's Award for Voluntary Services 2019.

Three and a half years ago Sue asked me if I would like to join DanceSyndrome as a Trustee which I proudly accepted. UnLtd allow all employees to have two volunteering days per year which enabled me to attend DanceSyndrome board meetings and strategy days, and in my own time I have supported the development of a social media strategy and various campaigns.

In 2020, the global pandemic hit. Alarmingly, people with learning disabilities suffered disproportionately, with a higher death rate, and the need to shield. Many had limited access to at home care and support and millions suffered severe loneliness and isolation. Initially people with a learning disability were not prioritised for the vaccine, until high profile intervention from Jo Whiley caused the Government to reconsider.

DanceSyndrome had to pivot their operations and quickly shift their classes, workshops, performances, and training online. In the beginning this was a big challenge and learning curve, but it has resulted in individuals joining Zoom classes from other parts of the UK, Amsterdam, and South Africa.

The pandemic was also a time for reflection and re-evaluation. After ten years at UnLtd, I began to think about my next move while the current Managing Director of DanceSyndrome was having similar thoughts. In a fortunate stroke of serendipity, Sue approached me about taking on the Managing Director role and after several conversations, meetings, and a formal process, I accepted the role and will join DanceSyndrome to work with Jen and team on their next chapter on 1st September 2021.

DanceSyndrome have a vision to develop more strategic partnerships and expand their provision across the UK. There are so many opportunities to support and engage individuals with learning disabilities of all ages and backgrounds through inclusive dance and I am excited to make a contribution. Jen has a vision to have a personalised 'DanceSyndrome' plane fly in the sky with a banner saying 'Jen Blackwell, Queen of DanceSyndrome' floating behind it for everyone to see and as she is a force to be reckoned with, I do not doubt this will become a reality.

As I exit UnLtd, I have reflected on how many more Jens there might be out there, many without the same incredible support net that Sue and Malcolm have provided. People with learning disabilities are limited only by the barriers which society puts in their way, and it is imperative that organisations like UnLtd continue to get behind them. If we are to support leaders with learning disabilities, grant funders must get better at considering their needs. This could mean:

  • Being open, targeted and focussing outreach through non-traditional routes and in non-traditional ways. We must actively engage with disabled leaders to find & identify diverse talent.

  • Being fully inclusive, this includes understanding the multiple challenges, making application processes more accessible, but also ensuring the support we provide can be flexible and tailored to need.

  • Seeing the person, not the disability and having both disabled and non-disabled people involved in core processes. This means ensuring staff are trained to spot unconscious bias.

  • Telling more and better stories about the leaders in our midst, busting stereotypes and demonstrating what is possible when we break down barriers for disabled people.

It is up to non-disabled leaders to take action to break down the barriers in our society. I look forward to helping many more people like Jen to fulfil their potential.

To find out more about DanceSyndrome and their classes, workshops, and Dance by Example Leadership Training, please email: info@dancesyndrome.co.uk

To discuss partnership opportunities or to support our work, please contact Julie Nicholson, Managing Director at julie@dancesyndrome.co.uk

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