Friday, December 27, 2013

Chritmas is over-2014 becons

Yes, I'm pretty pleased too.  It's exhausting to one soooo sick. The stress of it mind-boggling when everyday matters like putting on your shoes, washing your hair, or having a bath saps all energy, let alone 'dealing' with Christmas'.  But I didn't do too badly really. I got involved with DAG:T Christmas Bake-off and enjoyed it even if it took weeks to recover and as the 'recovery' ran into Christmas shopping etc I really haven't yet 'recovered'.

But the Care crib was a GREAT success. and LOADS of food went off to elderly/needy folk. And then to cap it all we persuaded two older folk age 88 and 85, neighbours who live alone to join us for Christmas.  Now THAT was some coup as they had spent 30 years on their own for Christmas. We think they enjoyed it!!

But now looking forward....well today I can barely think...befuddled by tiredness, on antibiotics and a body that slowly yet surely is on a very downhill slope. I wonder how 2014 is going to be more enjoyable as I fight to get a decent wheelchair, decent help and decent care.

I don't want to spend 2014 begging for every little thing I need to make my life endurable. so I will fight a disability rights agenda to my last breath.

I will try to align with s disability rights group.  But there really is none to speak of.  Ireland's disability 'community' is hooked into a charity model as clearly as stuck with super-glue.  That's the way I see it anyway. 

There's only one person I feel any 'fellowship' with (sorry wrong word for a feminist) but you know what I mean.  Suzy Byrne; the only disabled woman I can vent my spleen at who understands my whole anger and my whole 'piss on pity-rights not charity' philosophy. SHE alone, affirms me, comforts me and validates me.  Otherwise I'd surely believe I have not one single fellow traveller in this State of a pitiful country for disabled people.

 'Nothing about us-without us' sort of thing has not permeated the HSE which continues to believe disabled people MUST do as the physio/occupational therapy team see fit!  You are NOT allowed think for yourself, at least not here in Co Wicklow.  If you don't like what they say, if you don't AGREE with what they say, if you argue about what they say you are called a 'serial complainer'.  (ME) or as my twin, who is outrageously designated has having 'unreasonable complainant behaviour' , this apparently part of the 'vexatious complaint procedures' yet they never took this policy through in my sisters case so how can she be deemed so?  We'll let the equality tribunal sort that out!

2014 will be my all out attack against the HSE philosophy here in Co Wicklow that as a disabled person you have no voice.  They clearly and viciously mark you out if you do have a voice and they clearly and viciously 'punish' you for ever saying a bloody word against the service.

Even when a newcomer comes on the scene the old incumbents pass on the negative stereotypes so you just cannot present yourself anew to a new manager who might view things more kindly.  It's barbaric when two managers in a HSE service can demonise disabled people such as to drive them close to suicide.  But this is Co Wicklow if you ask for a better disability service.

I intend to fight these stereotypes, I'm determined the people of Co Wicklow understand Rights not Charity as a philosophy for the care of sick, elderly, disabled people in this country.

That's my resolution for 2014.  As well as losing weight and trying to enjoy myself.

But in a country such as Ireland and a conscience such as mine, as sure as eggs is eggs, I'm heading into a storm of protest in 2014.

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