If all humans are to be afforded the respect and opportunities that they deserve, we have to learn how to live differently and embrace people from all walks of life – inclusion from the bottom up.

Perhaps it’s easier to look at inclusion as a life-style choice?  Because choice it is.  If inclusion is your

Jen inviting Equal Opportunities for all at Westminster 2002

default setting it subconsciously impacts the decisions you make on everything all of the time whether you like it or not.  If it’s an add on, perhaps your instinctive decision or reaction would be different?

For me it’s not about being selfless as we all need those times when we look after ourselves first, but rather about making decisions together with others to arrive at the best outcome for all.  Or taking an untenable situation, tossing it around, sharing with those that you love, those that you can, those that you must and finding a way forward.  Or there are those moments when you just can’t help yourself and have to step up on behalf of others.

Does it follow that if you can’t do something in the same way or with similar efficiency or expertise as your peers, that you have failed?  Or does it mean that you are different?  Is it ok to be different?  In our experience, it seems the answer depends on who you are.

If you have been classified as learning disabled, the system sees doing something differently is justification for funneling you off to that alternative universe, away from your community and society, whilst simultaneously stripping you of your basic human rights including being able to follow your dreams, choose how, where and with whom you live, in brief, to have a life of your choosing.

What gives others the right to make decisions for you?  Worse still, this system generates learned helplessness and hopelessness.

Increasingly more people including Jen are countering this trend but for those with minimal assertive skills or support who can stand up for them, this is still prevalent. For instance, those signed towards special schools qualify for transport to get them there and back so often they find themselves sitting in a minibus or taxi for well over an hour at the beginning and end of each school day.  This may be good for the family giving them more time to get to and from their work but does it benefit the child?  Or would the walk to the local school have been a better option?  What would your preference be?

If you have a learning disability but it’s not recognized or considered profound enough for you to be classed as learning disabled and meritworthy of ‘support’, you may not be funneled off, rather be left to cope or have your needs ignored which naturally leads to greater need and dependency on the system whether health or social services, or increasingly the third sector.  If you’re lucky you might encounter or find a visionary organization or individual who recognizes that you have additional or different support needs and goes to the trouble of reaching out to you, getting to know you, working with you and fathoming a way to help.

This is the case for many who discover DanceSyndrome.  You will find such individuals in communities in the Northwest where Jen and the dancers deliver regular weekly workshops.  They will invariably speak about that 1 hour of the week becoming the most important of their entire week, that they look forward to it all week long and love the experience of fun, laughter, joy, engagement in their shared passion, but most of all having found a place where everyone belongs and is included regardless of any label society may choose for them.

If I’m honest, apart from being with just one or two others or in the great outdoors, DanceSyndrome is the one place where I feel that I truly belong.  The welcome from all is so warm, the hugs so genuine, the chat so caring, the fraternity and sense of belonging of all for all so powerful, all underwritten by equity not as a mantra but as a given cannot help but put a smile on my face.

If your IQ is considered normal, then it is anticipated that you will conform, albeit you might be considered weird, not normal, mad, strange, different, and importantly society now accepts those who identify as LGBTQ.  I’m sure there will always be numerous other normals to these too but apparently, that’s all fine.  You belong without judgment.  You qualify.

Anthony designed travel carrier for birds of prey with falconer Daniel

Anthony’s classic statement applies perfectly to us Blackwells, ‘who wants to be normal?’  His normal has always been similar to ours; to be different!  To plough your own furrow, be your own person, make decisions for yourself rather than be channeled where others think you belong.  Consequently Anthony has had some amazing experiences at many times in his life such as his work experience at 15 when he found himself directing bi-planes at the Osh Kosh festival in Wisconsin as well as going for a spin in a fighter jet, or creating a unique curriculum for himself at 16 in the mainstream school where for 1 day a week he worked alongside a friend who was a falconer.  Daniel was like a big brother to Anthony which is exactly what he needed, but to have that opportunity through a shared interest was fabulous.

During my life there have been numerous occasions when I have experienced not fitting in.  Maybe yours too?  For as long as I can remember I hated the playground at school, the clique groups where I didn’t belong, the rough and tumble, the cold, which meant I sought out groups to attend at lunchtimes but I still had to suffer break times.  At high school music was my refuge.  We were always allowed to practice individually or make music with friends which gave me protection, but also a lot of pleasure.  Some of those people are lifelong friends we don’t see for decades at a time, but whenever we do the depth of friendship allows us to pick right up where we left off.  That’s an indescribable joy.

So should we have followed the advise of the medics when Jen was born and ignored her?  Could you have cast aside a child born to you just because they have a genetic difference?  Does that make them any less human?  Does it change their basic human rights? Why is it only acceptable to do something in a particular way?  And what gives any of us in society the license to treat any individual so appallingly?

How incredibly boring would the world be if we were all the same!  Through first hand knowledge I have learnt that people with a learning disability present an amazing opportunity for society to not only embrace but learn from!

Regardless of our IQ we all have support needs throughout our lives – just different support at different times to be the best that we can be, and free our unique talents to flourish in a diverse world where everybody matters.

Look at what can happen when you talk the talk AND walk the walk.

I openly confess that for years I tried to ‘tutor’ Jen in numerous ways.  I thought I knew best.  Now it feels like total role reversal.  Now I’m happy to learn as she teaches me greater compassion and understanding with every step and turn in the road.  My life is infinitely enriched as a result.  My teacher has learning disabilities.  And I have countless supportive friends I would never otherwise have come to know.

Jen has moved from being written off BECAUSE of Down’s syndrome to being held up by the highest institution in the land as a model of good practice – recognized by the King for her services to disabled people.  That’s a total about turn.

Back in the day we had no idea that we were embarking on rewriting the rule book, creating an alternative society where every person is equal.  It’s always been the way for us – including everyone no matter who they are or what their perceived abilities are, or physical attributes. I’m still amazed having been shortlisted for the Disruptor for Good award when I’ve only ever done what felt natural to me.

Life is for living, but living in a way which is respectful and supportive of every person involved.  We haven’t always got it right.  Sometimes we’ve floundered, tripped up, taken a wrong turning, but many times we’ve made good decisions working together with our family, our loved ones, our communities, schools, authorities, dancers, with the overarching need a constant; to respect, value and strive for equal opportunities for all.

For those where EDI is mandatory, or at the very least strongly recommended flavour of the month, where organizations seek to evidence their good practice and prowess in these fields.  Can inclusion or equity ever be successfully bolted on?  Difficult to answer when you’ve not lived or chosen to exist in that environment, but Jen, Blackwells, DanceSyndrome are testimony to the incredible opportunities and unparalleled joyous outcomes awaiting those who choose to live this way – including everybody for who they are and what they can bring and teach us.

If you’d like us to speak at your event, conference or be a panel member for citizenship or inclusive conversation, discussing how every organisation, system and workplace can be inclusive from the bottom up, get in touch.