Wednesday, 6 April 2016

Turn, turn, turn

You may know a song by The Byrds called Turn, turn, turn. Actually, you’re probably all far too young to remember it unless you heard it on Pick of the Pops – ask your parents to sing it to you! (Ah, if only this were a Vlog I would sing it for you! Alas, you are spared!) It goes like this, “To everything (turn, turn, turn), there is a season (turn, turn, turn) and a time to every purpose under heaven”. It got to number 1 in America.

Ha! You're singing it, I can hear you!
The song was written way back in the 50s by Pete Seeger and is actually based on a Bible passage from the book of Ecclesiastes “There is a time for everything and a season for every activity under heaven, a time to be born and a time to die, a time to plant and a time to uproot”. It continues with more examples but later says “a time to be silent and a time to speak”.

I’ve not written for a while. It’s not that there hasn’t been anything to say – quite the opposite in fact – no, it’s that this has been a season of quiet; a time to be silent. Sometimes we need to have these times, not just to re-charge our batteries but to re-calibrate ourselves, make some adjustments, re-focus, step back, breathe, be refreshed, take a walk in the rain and remember that we’re alive!

So now, here I am writing again; a time to speak up. And it seems there’s much to speak up about when it comes to Emily and matters of Down’s syndrome generally. There’s so much happening in Emily’s life that it’s hard to keep up sometimes. Changes to college education, the Educational, Health and Care Plan, cuts to adult social care which has affected her ability to volunteer at a project she has been working at. Then there are the small matters of adult relationships and other “big people” stuff like how to deal with grief when people die (too much of that already this year). She does amazingly well to adapt to so many different situations and so many changes and challenges.

The world we live in is not at all kind to those who may be vulnerable, especially vulnerable adults. When your kids are small and in education there’s a statutory bubble of protection around them. It provides a framework for the here and now and the coming years, there’s support; strategy. In adulthood much of this is stripped away, leaving our young adults to be tossed around by the waves in a sea of apathy, rejection and dereliction of a duty of care by local authorities and central government.

So it’s time to speak up; time to make some noise, rattle some cages, demand some changes and try to remember to enjoy the journey. Any small victories are ours to share with others and with those who follow along this same path. In the words of George Bernard Shaw:

"This is the joy in life…being used for a purpose recognised by yourself as a mighty one…being a force of Nature instead of a feverish little clod of ailments and grievances complaining that the world will not devote itself to making you happy…I am of the opinion that my life belongs to the whole community and as long as I live it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die. For the harder I work the more I live. I rejoice in life for its own sake. Life is no brief candle to me. It’s a sort of splendid torch which I’ve got to hold up for the moment and I want to make it burn as brightly as possible before handing it on to future generations.”

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