Without realising it, it seems that Malcolm and I have been practicing co-production all our lives, supporting each other to be the best that we can be.

Malcolm, Sue and Jen Blackwell

With the arrival of Jen and her unexpected learning disabilities in the form of Down’s syndrome, she was naturally embraced into the same cultural norm.  I’ve always sought to do my best as a mum, and from day one I never wanted to look in the mirror and say ‘I could have tried harder’.

Perhaps now, 41 years later, we are experts by experience, but I prefer ‘professionals’.  As professionals we have an important contribution to make from those inauspicious beginnings.

 ‘Put her in a home and have another child’

is what we were told when Jen was born after a textbook pregnancy. She was written off by those who were paid to care for the health and wellbeing of everyone, and had no way of choosing what was right for her. As her parents we found our way, step by tentative step, unsure and unclear, always listening to ourselves and Jen, and Anthony when he joined the family two years later.

Jen is now a multi-award winner, most recently being recognised with a British Empire Medal in the King’s Birthday Honours list, June 2023 

Our charity DanceSyndrome was set up out of frustration with the system. It is also a multi-award winner, impacting the lives of thousands of people

Our brand of co-production permeates all areas of our lives.  None of the 4 of us would be living as we do without the support of each other, and without the support of Jen’s dedicated care team or DanceSyndrome.

I believe that co-production happens naturally when underpinned by a bedrock of inclusion, and inclusion only happens when people are respected and valued for the person they are.  As society we must learn to listen, and communicate in a way that shows we are listening.

There is absolutely no point in sitting down with Jen for a serious discussion of any length without being open to interjections of dance – whether to share choreography, to inform, or to relax. Equally there is no point in trying to schedule that serious discussion at a time that is convenient and works for you.  It needs to be in the moment that Jen can embrace.  Whenever I hear ‘Mum, can I ask you something?’ or ‘I know they’re a special friend, but ….’ it’s time to down tools, to listen attentively to what’s being said (and what’s not being said), to be present in the moment, to gift the time to seek to help to find solutions through the challenge Jen is striving to unravel, but struggling to make sense of.  And on those occasions when nothing seems to be working in spite of visiting it repeatedly and from different angles, to recognize that sometimes you need the support of others – other carers, other family members, friends, professionals – and that’s ok.

As a parent/carer you don’t necessarily need to be the expert, but you are the professional in the life of your loved one with learning disabilities.

Over the years it’s those professionals who have been able to say ‘I don’t have the answers, please can you help?’ who earn our respect and our gratitude, and frequently develop over time into family friends.  They support the cause. They want to learn from the methodology we’ve developed through years of trial and error. They often choose to reach out to others in society using the insight they’ve gleaned.  These professionals can come from any walk of life, they enhance our lives and we theirs, and together we are stronger. Another form of co-production in practice.

Thinking differently is the norm

As parents, Malcolm and I believe life is for living.

Add in Jen who loves being her own person ‘I’m just being me – it’s a family thing’.

Spice it up with Anthony, our innovating son who says, ‘Who wants to be normal?’

You have blackwells.biz where #thinkingdifferently is the norm.

DanceSyndrome is dancer led, disability inspired. #TeamDS are led by dancers who happen to have learning disabilities.  They work inclusively using a model of co-production.

Blackwells and DanceSyndrome are both empowered, underpinned and driven by an ethos of inclusion, equality of opportunity, and as I have now come to appreciate, co-production.

Thinking Differently allows innovation. Co-production is a method to implement change. We’re ready to share what we’ve learnt about loving, listening and co-production in a family and across the wider community so that more people can be supported to be themselves, expressing their unique potential in a society that values everyone.

“Jen and her leadership provides a model for the difference that organisations like DanceSyndrome can make. Jen is crucial to making this happen.” Professor Chris Hatton, Social Care.

We’d love to hear your thoughts, please leave a comment below.

If you’d like us to share at a workshop, conference or business event, get in touch. Co-production means all of us learning and listening to each other. It is the art of supporting each other to be the best that we can be. It takes practice & is crucial for an inclusive society.