Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism


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The Ballroom

Photo by Fidel Fernando on Unsplash

Spinning, twirling, twisting, turning.

She scans the kitchen, looking for the source of this audible joy; this beat, this rhythm.

Melodic notes of life amplified by her hearing aid; she asks for neither but appreciates both.

This is her way of life, of living.

She sits though never still, she dances on.

Side to side from her hips, from her waist.

Up, down, still seated, bouncing; looking up at an imaginary glitterball, laughing, smiling.

Often smiling.

Back on her splinted feet.

Heavy footed, as the lightest of feathers appear to fall around her.

She dances like no one is watching.

This is her way of life, of living.

But even if they are watching, especially if they are watching, she dances anyway.

She needs no invitation or permission to be in this glitterball moment; though society has deemed she does.

Her extra chromosome already disqualifying her from automatic access to the Ballroom.

Barriers to entry erected years ago, where Marshalls gather to scrutinise tickets; discouraging any without from finding a way in.

They see only invalidity; stamping their own heavy feet on the feathers and dreams of another.

They do not see a way of life for her, only a life not worth living and I surmise they too, may never have been inside the Ballroom.

At the wall, I turn off the source of this momentary pleasure, as is my prerogative, for I must get on with my plans for the day.

As the kettle boils so the dancing stops, and with it, at least for now, the joy.

For others the dancing never began.

Cut short at the box office.

Ticket deemed invalid then discarded.

Lost.

No one looks for what they lost outside the box office; rather, they walk away.

Knowing, perhaps, they lost something yet unable to truly comprehend its worth; disorientated, they leave it behind.

I wonder, were they trampled on too, before they could discover their trove? 

Kindness surely did not remove its boots as it went in for the kill.

This is now their way of life, of living.

Lost glitterball moments in the kitchen; the Ballroom.

#Downsyndrome

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Missed

Photo by Gabriel Valdez on Unsplash

Who’s missing from your table?

Who’s not sitting or standing on your floor?

Look around and ask yourself 

Who have we never invited in

To even set foot in our door?

Who’s missing from your plans and dreams?

Who’s never expected to play a part?

Look around and ask yourself 

Who else could be here, changing our culture from within,

Changing our heart?

Who’s missing from your programmes?

Who’s not being given any consideration?

Look around and ask yourself 

Who else would like to do as we do?

They are not some kind of aberration.

Who’s missing? 

I am, though I am not missed.

Who’s missing out?

We all are.

#downsyndrome

Inclusion.

noun

                1. the action or state of including or of being included within a group or structure.”they have been selected for inclusion in the scheme”