Inclusion, or rather the lack of it as a given has been the challenge of our lives.

So much lip service paid, so much time, talk and energy poured into it, so much money spent, so many claims made, about something which in essence is so simple; in practice can be daunting.  But is it of necessity such a huge mountain to climb? So many questions asked needing to be answered and understood.

What is inclusion? And what is not inclusion?

True inclusion IS endemic within your practice.  It is hardwired in your mindset.  It permeates every thought, decision and action taken by an individual or organization.  Every person is seen, heard, valued, embraced and empowered to be their best selves.  It is a place or space resonating to the dance of joy , happiness and opportunity, where every person strives for the common good and creativity flourishes.

Inclusion is NOT judgmental.  It is not a bolt on.  True inclusion can never be tokenistic.  It cannot be a walk on part to life standing in the wings and watching everyone else have a good time.

I come from a privileged position.  Being gifted Jen for a daughter provided me with the best teacher in the world.  My teacher has learning disabilities.  My teacher is Dr Jen BEM.

As parents we make decisions for our children.  What is right for some is not necessarily right for others.  We chose mainstream, not then aware of the numerous challenges lying in wait and battles yet to be fought.

From birth Jen was immediately signed to a sidetrack in life.  This is the medical and societal norm for people like Jen.  It has at times been traumatic, at others challenging, and yet others illuminating.  Jen didn’t choose to be born with Down’s syndrome.  But she was.  With an extra chromosome in each and every cell of her body Jen is and always has been a human being.  Surely she has human needs just like you and me.  Jen is not a Down’s syndrome.  Jen is Jen.

You name it – Child Development Centre, Special playgroups, Special school, Special youth club, Special holiday clubs, Foundation courses, Day Centres – it’s all there – a parallel universe with the system always steering you towards it. 

Segregated, but why special?  It’s expensive to run in addition to mainstream provision, but most of all it takes the child away from connections in their community.  Expectations are constrained, horizons are limited, and where are the role models in any aspect of life?  A few are spectacularly breaking out of this parallel universe driven by their passion but most are stuck out of sight and out of mind.

For some children maybe it works, for some parents maybe it works, but for us Blackwells it made no sense.  We saw Jen as part of her locality, her village, her family, her school. 

As society I believe we have a duty to support the 1.5million in the UK like Jen.  We’re not all born equal, but in a society striving for equity and equality of opportunity in life it is imperative we afford and provide appropriate support to those who need it most.

Do those born without the innate capacity to take control of their lives or direct them in ways that are intelligible to others, have any less right to a life of their choosing?  It seems to me that we should be leaning over backwards to support people to live their best lives working alongside them, going out of our way to meet people with learning disabilities and others who are marginalised where they are, using their preferred language of communication.

At 14, failed by the system, Jen was hurting badly.  We took an enormous gamble feeling that she would be happier home schooling so I cleared my desk to morph into mum/tutor.  We mostly worked with dance (Jen’s language), and music (a shared language).  It’s amazing what can be achieved together with a piano and a flute and voices.  We incorporated humanities, French, dance, reading music, etc. and to my astonishment, Jen learnt to sing in tune, something I’d long given up hoping for.  So then we looked at choirs.  In fact we went out to the village looking for people to help in the tutoring, and quickly found we had a structured week with Marjorie taking Jen to choir; flute, dance and recorder playing ongoing; maths with Margaret; health and beauty and charity shop with Linda; English with Joan; and floristry with Carole!  Wow!  So now Jen was not only known but embraced by the village going over and above to support her.  People gave their time willingly, and Jen loved the attention being recognized and valued as the unique human being she is rather than being expected to conform to a system unable to treat her as an individual.  Six months later she was back on her feet chatting and smiling, and from 15 – 18 thrived at the local community high school who worked closely with Malcolm and me understanding that we had in depth knowledge of this unique human being.

Support can be costly but it is necessary.  The resulting benefits of the right support at the right time are unquantifiably huge.  Not only can people like Jen be inspirational, offer hope to others, demonstrate the Art of the Possible, they can save the state quantum amounts of money when not as reliant or dependent on services. They can contribute to society with sometimes visionary ability in ways that the rest of us can only marvel at. They spread passion, joy, happiness and wellbeing in their wake, they can light up your day and make the world a better place.

Jen’s Special careers adviser we were signed to couldn’t understand her focus. Jen wanted a career in dance.  It felt as if it was a crime to have a learning disability and be aspirational. 

We believe that when people are actively engaged in their passion they are happier and more fulfilled. Suddenly life is worth living, there is something positive to get up for in the morning, a reason to put real effort into appearance, and now, after many years of focus and effort doors are opening that could never ever have been countenanced.  Hand in hand with DanceSyndrome and her brilliant carers, Jen is in demand, DanceSyndrome is in demand, internationally!  October/November 2024 sees us in 3 different continents!

We now have irrefutable empirical evidence that inclusion as we understand it is has proven to be stunningly successful!

So let’s think again.  What is inclusion?

Inclusion to me means the door is wide open.  You do not need to knock or ask permission to gain entry.  It is a given that you can enter and that there will be a warm welcome for you.  In a space and place where every person is valued, respected, supported to contribute and participate in a way that works for them, vibrancy, energy, passion and focus shine through.

When this happens for people so often ignored they experience something uplifting, almost incomprehensible. They find themselves, their lives begin to have meaning, they are happier, energized, fulfilled, more confident, and discover the joy of connecting with others with purpose.  A shared common language opens doors to possibilities and worlds like never before, people’s inner talents are given voice and opportunity to flourish, they become their own colourful characters confident in their abilities to play their part in human kind.

Inclusion is successful when embedded in the ethos and foundations of an organization.  It is a mindset where there is no doubt that every person matters. It powers a journey of discovery and wonderment where opportunism is endemic.  It enables every person to be seen as themselves, to share their hidden talents, to be included in the mix, to be individual human beings working together, because together we are stronger.  Aka Dr Jen BEM ‘We are united…………together’

Please share your comments about true inclusion, or get in touch to further our conversation and let’s start making inclusion the foundation of everything we do in all parts of society.

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DanceSyndrome offers Inclusion in Action training and consultancy to organisations of all shapes and sizes

The Blackwells are available for speaking and sharing The Art of the Possible to events, podcasts and organisations of all shapes and sizes.