We are all on a journey through life.  Inclusion, or the lack of, affects every person in different ways, likewise social exclusion which can be a lonely life sentence where the recipient is deemed guilty without trial and having committed no crime.  We develop and change as the years roll by moulded by our experiences, opportunities, exposure.  

As children we are heavily influenced by our environment and upbringing.  And so we emerge into adulthood, a place where parental/guardian influence usually reduces requiring us to step up to become responsible human beings honing our own attitudes to life and others we encounter along the way.

Sue and Malcolm Blackwell supporting each other through journey of inclusion

We learn through living.  Malcolm and I frequently find ourselves discussing the present – We are where we are.  Where do we go from here?

I, like many other young adults struggled to assert myself, and in my attempts to survive in the real world was probably unintentionally  guilty of being somewhat aggressive.  As a shy naturally reclusive introvert I found ways to function in certain situations but was totally at sea in others.  As a student standing and chatting round the braziers with the homeless at Spitalfields or doing soup runs was therapeutic, a place where I could be myself without fear of rejection.  Another huge support in my life has been Malcolm.  We connected with each other as teenagers from which moment on I felt included in a personal way I’d never previously experienced.  He found time to care about me.  Those years laid the foundations for the rest of our lives.  

Age 26, along came Jen.  Our wanted eagerly anticipated first born daughter after a textbook pregnancy and birth.  5hours later the rug was pulled from under us when we were labelled a disabled family.  Jen ‘might’ have Down’s syndrome.  10 agonising days later it was confirmed.  Instead of euphoria with our new baby, in that moment we experienced heartache, shock, sorrow, and a sense of shame – there seemingly was no apparent explanation but what had we done wrong?  Instead of revelling in those early days we went through the motions of parenting.

Our mantra came into play.

We are where we are.  Where do we go from here?

Research was the answer for two recent graduates.  We didn’t like the gloomy information hidden in ancient heavy tomes, nor the empty silence from the health professions, so instead went looking for abstracts of research papers which were more recent, encouraging, interesting angles of enquiry.  The local library proved invaluable.  Nothing was too much trouble for them.  One thing led to another but with hindsight it’s fascinating to see how Jen has given me my voice.

Jen has made me me.  Malcolm helped me turn the corner.  Jen 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.  One thing led to another. 5 months old we flew to Detroit for 24 hours to meet an alternative doctor, at 6 months we shared findings and information in the village hall, and visited the British Institute for Brain Injured Children (BIBIC), who furnished us with the structure of our lives for the next 6 years, by 9 months old we’d embarked on patterning, initially for 3 hours a day, increasing to 5 hours a day with 60 volunteers on the books coming to gift Jen 1 hour each week.

Now I was part of a community created to support Jen.  Not only was I included, but was seen as having worth, adding value and knowledge that others didn’t possess.  Inclusion on steroids such as I’d never contemplated or previously experienced.  Now I had hope and encouragement from others to believe that there might be a rosier future than had been painted at Jen’s birth.  

In turn now Jen speaks passionately and authoritatively about us being the rock in her life which I regard as a huge compliment, especially as there have been exceedingly difficult times when she has not felt in the least bit well disposed to us!

I believe every person has their own unique support needs no matter who they are whether CEOs, high flyers, celebrities as well as the man in the street and all those disenfranchised by systems, and complicated by different environments where we don different hats such as home, work, school, social opportunities.

An inclusive society listens, not only with our collective ears but with hearts and minds too and is atuned to body language and involuntary reactions.  In Jen’s life, put the music on and she will be dancing!  Sitting and listening is not an option unless it’s gentle mood music.  Or when things are getting a bit heavy – too much focused talking – Jen will indicate with a politely stifled yawn that she’s had quite enough – it’s time to put the music on and dance!  

And so it’s been throughout Jen’s life.  She’s danced putting the shopping away, going to the bathroom in the morning, going to bed at night.  With the right music playing in the supermarket, Jen will be dancing in the aisles.  I used to be embarrassed, but I’ve got over it.  Now I just smile.  It’s just Jen being Jen!  Jen would like us to know that she is a dancer and thankfully we listened or we would all have been the poorer for it.  Now her dancing focus has earnt her a British Empire Medal for services to disabled people!

There is, I’m convinced a nugget of gold inside every person.  The job of society is to listen, find it, nurture it, embrace it and watch it grow.  Our experience shows that the right people will be drawn in like moths to a flame.  Some will fall by the wayside, others will stay and grow themselves becoming part of a community, an inclusive community when every person matters; has equal opportunities to connect, to voice their opinions constructively and professionally (verbally or otherwise), to contribute and lead, to seek, discover and take the support that they need whether learning disabled or not.

This is the charity DanceSyndrome, a place where everyone belongs, where people feel wanted and valued, where they can find joy and happiness, where they are not put into isolated boxes dictated by the system, but rather given scope to become stronger, team players, leaders in their journeys through life, in their families and communities.  This is the world I love living in, being embraced by, and valued.  Being amongst the DanceSyndrome family is like nothing else I have ever experienced in my life.  It’s a place where inclusion is a given demonstrated through smiles, energy, laughter, unbridled joy, where every person matters and has opportunities to step up and step out; where leaders emerge from unexpected places, invisible giants.

Jen has found the support she needed to excel in life in the inclusive society which is DanceSyndrome, others too have found and unlocked their nugget of gold, yet others discover new confidence in their lives and garner respect when before there was none.  These are unquantifiable invaluable benefits which impact every person at DanceSyndrome.  If I had just £1 from every person who has given us positive criticism  over the ears, I’d be a very rich woman by now!  

Malcolm, Jen and I are immensely proud of our Dancing family where everyone belongs, where everyone matters regardless of who they are, what they look like, or what their perceived abilities.  

Now to connect and share on so numerous others find their happy inclusive place where they experience the joy of inclusion. #TakeActionMakeImpact

If you’d like to explore how we can support your team unlock nuggets of gold, get in touch.

We’d love to hear your thoughts on our journey of inclusion – leave a comment below.