“Put her in a home and forget about her.”

That’s what we were told forty-four years ago, five hours after Jen was born. All Malcolm and I wanted was a life for our daughter that didn’t look like the one society had already written for her. We wanted her to live fully — whatever that turned out to mean. We had no idea what was possible.

We’ve never had a strategy. We’ve had a question, and we’ve asked it every time we’ve faced a challenge or an opportunity: “We are where we are. Where do we go from here?”

This week we found that we’ve been shortlisted in three categories at the 2026 Voice At The Table Inclusion Leader Awards:

– Malcolm and I, jointly: The Hattie Llewelyn-Davies Lifetime Impact in Inclusive Leadership
– Jen: Inclusive Growth and Market Reach
– DanceSyndrome: Delivering on the Mission with Inclusion

Inclusive Growth

We’re delighted the judges recognise the enormity of what inclusion does in businesses and organisations, and that everyone whatever label they’ve been given is able to lead, when they have the right support. Jen is in a category that recognises leaders who open up new audiences and grow a customer base. Our daughter who has Down’s syndrome, who was written off at birth, who needs support to do everything from leading a dance session to living independently, is a finalist in it.

At 18, Jen knew exactly what she wanted: to be a community dance leader. We searched for ten years. There was no training pathway anywhere in the country that could support Jen in the way she needed.

So in 2009, we built one. The first board meeting was in Jen’s bedroom. Fourteen dancers, with and without learning disabilities, in a community space. Malcolm and I facilitated the early sessions and made lunch for everyone, because community begins through connection, not just on a dance floor.

Now, DanceSyndrome reaches about 10,000 people a year and is co-led by Dance Leaders with learning disabilities. It is an Arts Council England National Portfolio Organisation, it trained 180 Senior Ward Managers through an NHS England contract via FONS, and in June this year it became the subject of peer-reviewed research in Perspectives in Public Health.

Last week they were at the University of Lancashire for Trauma Informed Practice in a Changing World, a national conference run by Lancashire and South Cumbria NHS Foundation Trust. Around 250 senior leaders and practitioners were in the room, from NHS trusts, ICBs, local authorities, councils, universities and charities learning from the team who presented on the impact of the work: learning from people with learning disabilities. The leaders of the session. Our thanks to Chief Nurse Oliver Soriano and Associate Chief Nurse Paul Jebb for the invitation.

What business tends to miss

Malcolm spent 35 years in international business leadership. The businesses he led turned around.

He’ll tell you that had nothing to do with an inclusion and diversity programme. It had to do with noticing and listening to people — the admin assistant who got sent to college, the potential nobody else had bothered to act on. What is experienced in one part of life can impact all the others. He knew from the most personal experience what it costs a business, and the community it serves, not to embrace everyone that makes it run smoothly.

Inclusion isn’t a cost line or the responsibility of HR. It’s the condition under which people are supported to develop all their skills and talents to the benefit of all.

Jen’s own record says the same thing. A British Empire Medal for services to disabled people. An Honorary Doctorate from the University of Salford. A Silver Stevie in New York, where her acceptance speech drew the only ovation of the evening from a room full of business leaders. Three appearances on the Shaw Trust Disability Power 100.

“Dream, believe, achieve,” is Jen’s mantra. “With the right support at the right time we can go further and further.”

We’ll be in London on 4th November at the Leadership Conference focusing on Inclusion for Business Impact. 

We’ll be there meeting leaders who are serious about putting inclusion first. Will you be there?

Forty-four years ago we were told our daughter wouldn’t amount to much. We didn’t know what was possible, but we refused to accept limitations offered by those who didn’t know her.

Acceptance is the enemy of extraordinary.

That’s what our book is about: Beyond Extraordinary: Who Are You Missing? book. Register to hear about the launch here: https://blackwells.biz/beyond-extraordinary-book/.

And if you’d like to talk about inclusion in action for your organisation, get in touch.

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Sue and Jen Blackwell are mother and daughter, co-founders of the award-winning charity DanceSyndrome, and the heart of a speaking partnership that includes husband and father Malcolm, whose 35-year career in international business leadership is one part of the family story. The Blackwells — Sue, Jen, Malcolm, and son Anthony — have spent 44 years living what most people only theorise about, and built something remarkable in the process.

Find out more about the Crusade for Social Change at blackwells.biz