Awareness with a capital “Eh”?

Apparently it is Cerebral Palsy Awareness Week in Australia. It may not be working. If I, as someone in the biz, only heard of it via one organisation’s Facebook post I think the general public may be blissfully UNaware. What is hoped for in such a week?

Well, we can regale folks with  statistics. Or at least try to. Navigation of the ABS site and several CP support organisations reveal that a child is born every 15 hours with cerebral palsy, or it may be 18. Somewhere between 20 and 34 thousand Australians have CP. That’s one in 4000 children…or is it 2 in every 1000? One site actually touted both the last statistic and that 1 in every 400 babies will have or develop CP but what’s plus or minus 100 babies between friends. Lies, damned lies and statistics. What I know for sure is that stats can be manipulated and (breaking the mathematician’s code) tell us not much except that CP is the most common childhood disability. But what does that mean? There are a lot of people afflicted (ewww…shudder) or shall I say dealing with the ups and downs of CP through a huge variation of issues and severity.

Shall we try the medical approach? Cerebral (of the brain) Palsy (muscle weakness or paralysis)  is an umbrella term for a developmental disability which affects the brains ability to control muscles due to an injury to the brain usually before, during or shortly after birth in a non-progressive but permanent way resulting in impairments in functional mobility and associated issues. (I hope you didn’t hold your breath through that sentence!) Medical-ese gives words that basically mean one side of the body  or both sides can be affected… one limb, two limbs or all limbs. There may, or may not, be issues with cognitive ability, speech and communication, eating, mobility, toileting, grasp and associated medical issues. Basically stuff is harder and some extra support and equipment is needed. Not to make light of the difficulties. At times the heartbreak is raw and palpable. But…and it’s a big but…the joys are immense.

And so to awareness, statistics and medical jargon aside. Unfortunately anyone wishing to become more informed about CP via Google would first see a medical negligence lawyers ad. It is a traumatic and necessary step for some families but it saddens me that this may be uppermost in peoples’ thoughts. I hope this week achieves one thing. People are people. Cerebral Palsy is not an adjective. So “that cerebral palsied child” is not a term that I favour. I have a kid with cerebral palsy. Kid first. Simple. Seeing people first. That’s what I wish for. Seeing a cheeky grin, an understanding glance, a funky hair do, a quick wit, a compassionate soul. That’s awareness we can all be proud of.

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5 thoughts on “Awareness with a capital “Eh”?

  1. Exactly what we learnt in OT…you don’t know someone who is a ‘broken legger’! They are someone who has a broken leg. I didn’t realize it was CP awareness week…you’ve done a good job filling the void 🙂

  2. Beautifully written Shell & from the heart of one who knows & lives with two great kids- one with a sick sense of humour & one with CP. Both equally loved. xx

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