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.

“Relentless Cheerleaders For Austerity” | Broadsheet.ie

“Relentless Cheerleaders For Austerity” | Broadsheet.ie

This has to be read.  I now understand why so few of my letters get published and why the huge disability march this year received very little coverage.

We must get a newspaper up and running that is 'centre-left' or even 'left' (properly 'left'  not Gilmore's 'left'!

This country is fast approaching fascism.  With the pressures squarely on the sick, disabled, ill, and elderly...oh an the 'non-productive' young unemployed who are told by state agencies to 'leave the country'.

Are some more worthy of others? The scale of suffering

I wonder is there really a 'scale of suffering'.  If you have this you have 100% care and support, if you have that you have 50% care and support and if you have that, you'll get none!

Well there is actually.  Those with cancer will often be seen as the most worthy of love, care and support...whilst those who have mental health problems...well , no, nothing much at all!  Someone , young with a brain tumour is far more worthy of 'Oh God how dreadful' , if held against someone struggling for years and years with a neuro-degenerative condition, that makes 'Quality of life' miserable.

Of course a big difference is having a loving understanding family and not having a loving understanding family. The former ill person can be hugely helped and supported by LOVE whilst the latter can sink into a mire of depression and anxiety without the love and support a family should/could give.  But not all illnesses have the same cachet in the stakes of 'love' to be offered here!

People's perceptions are shaped by growing up with myths of 'worthy' versus 'not worthy'. From childhood to be blind was seen as a worse fate than to be deaf, yet Helen Keller said something very astute about being deaf and blind...she said 'Blindness cuts you off from THINGS, Deafness cuts you off from PEOPLE'.  For her if she were to be 'cured' of one sense she'd chose was her deafness. She knew her isolation from PEOPLE conversation, relationships, community was what hurt most.   Yet did you know public perceptions about being blind versus being deaf means Blind charities get three times more than deaf organisations in donations.

There are age perceptions too.  Little children's illnesses are perceivably far more worthy of help, love and support than say a 70 year old. Even more so if the child is pretty, smiley and 'adorable'. Photogenic for fund raising. Newspapers love a child-help fund-raiser.

No-one likes this discussion and I won't be popular for this conversation. But when we divide who DESERVES the love and support, then we are on a slippery slope of inhumanity.  When we see some illnesses, some impairments and some individuals - based on age as more deserving than others then the soul and heart has been compromised.

For all are worthy and suffering in all it's guises is a monster that needs the fighting of a love that can beat despair of that monster. 

And no suffering is 'deserved' or 'less' than the other, no age group more worthy than another for Love should shoulder all....irrespective of the differences, or ages.

Staying Sane in Ireland!

Minister Kathleen Lynch  is a Teachta Dála (TD) for the Cork North–Central constituency and is the Minister of State for Disability, Equality and Mental Health.  See those very titles!  Disability AND Equality AND Mental Health!  Here in the Dail she wears the ribbon for Mental Health Awareness...
So she looks the part. 'look I wear the green ribbon of awareness' whilst at the same time I ignore disability and equality.  She has NEVER been shown to be the Minister of equality or Disability or Mental Health.  It goes far beyond wearing a ribbon Minister.  It goes right to the heart of your HSE managers so corrupt of principles they'd sell their souls to the Devil to keep their jobs and big fat salaries.  They would and do answer your inquiries in just the way you want them to!

You might as well say; "just tell me this disabled person is a lying scheming, manipulator who fabricates, embellishes and fails to really understand how much you are doing for them".  so that's just exactly what they write back to you, Minister Lynch, Minister of Disability, Equality and mental Health.

Then she passes her HSE mangers responses to the alleged, 'lying, scheming, 'serial complainers...of the HSE Services' just so they can see that the HSE Manager has reassured Minister Lynch that you, you scheming, lying, manipulative disabled person is so very evil to tell me the HSE manager is not serving your needs.

No matter the manipulative ways the HSE manager garnishes her story in fabrication and injustice or at the very least , fails to 'tell the whole truth and nothing but the truth' . In so doing tarnishes the reputation of that disabled snivelling little shit from Greystones that wrote to you Minister Lynch .

Well Mrs Lynch , Minister for Disability, equality and mental health, this snivelling little disabled shit has a PhD, whose integrity the HSE has before tried to tarnish...and did not succeed.  And I'll be delighted when I can go public on THAT little bit of 'settlement out of court' in due course to the benefit of the snivelling little disabled shit that I am.

I forsee that two snivelling little disabled shitheads in Co Wicklow will, in due course, obtain another PhD, this time in truth, Justice and integrity.  You are duly informed Minister Lynch, and Co Wicklow HSE.

'Piss on pity-Rights not charity'

This week I rang into 'Liveline' an RTE programme hosted by Joe Duffy.  They were interested in what I had to say about 'top-ups' to charity executives and asked if I'd be willing to go on air on Monday, yes, I said OK.  I had to be at home at 1.45 - 3pm , to be 'available'. 

They called me twice that morning to discuss my views before the programme went out.

At the beginning of the programme Joe Duffy's intent was to speak  about the Central Remedial Clinic's CEO getting 'top-ups' to his salary; apparently taken from money raised by ordinary folk who thought it was going to poor crippled children or adults.

I said I was horrified about the top-up's and that was ok, then he listened to two parents who had CHILDREN at the CRC.  They had a good long chat and I was at the end of the phone bucking to get a word in for ADULTS, for the issue of charities plugging the holes of HSE failure to support disabled people. So I 'interjected' to raise these points, mentioning the failure of my sisters and mine powered wheelchairs...  Who provided them he asked, I said the HSE....ah that's not what we are talking about he said.  I remonstrated...what I'm trying to get across here is a) the charities are not doing the great work everyone thinks they are b) and neither is the HSE and frankly why should charities plug the holes anyway. Charities have become 'businesses' and THAT is fundamentally a private, non-state service, paradoxically funded by monies given by ordinary people! Charities exist usually for those people the Government don't want to support such as the elderly, homeless  Drug Addicts, Disabled people etc. We cannot get rid of charities, many do good work, but politically marginalised people should be supported by the state as equal citizens.

I was saying or trying to say why should disabled children and adults have their support needs met by charities.  He didn't like this, was rude and dismissive and moved back to the mother with child at CRC.  Then my phone-line went dead! They cut me off. 

A woman rang back to say thank you and I said 'but you cut me off' 'dead in my tracks'.  Her excuse...to free the lines for other callers.

The ordinary person in the street give generously to charities, especially those involved with sick children, Jack and Jill organisation have been funded by the public to the tune of 50million. Laudable indeed, but very sick kids are emotive, not so elderly or disabled adults.

When it comes to older disabled people...forget it.  The HSE doesn't support me, my nurse whom I called yesterday as I was so unwell wasn't available, and has not yet phoned me.  My GP I phoned twice on last Friday, no return call. I called emergency doc who gave me medication that looked like might not be safe with my present meds so called my GP surgery again on Sat morning, no return call.  Monday a GP called ' I believe you wanted to speak to a doctor', 'Yes I said but you are too late, I took the pills and hoped they wouldn't kill me'.  She said she'd only got the message Monday morning.  OK so...great...I could have been DEAD by the time she called me on Monday!

Charities don't support me either.  I have tried to get support from a charity dealing with Parkinson's (my condition) well a helpline is available but no local support.  I tried the Muscular Dystrophy society (I'm covered by them for my muscle disease) a girl came out , took details I never heard from her again.  They had the gall to email me asking for a Christmas donation! When I complained a man rang me, I couldn't take the call and he never rang back. There is NO organisation in Ireland for my disease, which is so rare I have to be treated in London - though a facebook page is available.

The HSE have not provided me the means to get back to lecturing, or even out of my house,  I have 7 hours a week PA, as I use a wheelchair, this is NOT enough to get me back to work.  I asked the disability social worker to help, he came, took notes, said he'd give it some thought (on how I get back to work) but I never saw him again and he refuses to answer my phone calls or emails.

My powered wheelchair provided by the HSE is so crap my fist trip back from train station so ruined my back (spinal arthritis) I was admitted to hospital the following day.  The hospital bed provided by the HSE is sitting unused in my bedroom for a month now.  First there were no sides to it (I need these to help me turn over') , then the mattress was so thin I felt the slats and motorised mechanism which was too painful to lie on,  Then the motor died, days to get fixed, then a parcel arrived!  Ah good, the sides....no...wrong item...no sides. 

So the issue is NOT the 'top-up's to CEO's, the issues are why should disabled people, citizens of this state have their needs met by rattling buckets and philanthropic cheques from 'do-gooders' or 'feel-gooders'. We are citizens.  Yet adult disabled people, elderly people won't find support they need to live life 'worth living'.  Top-up's to CEO's and Medical personnel is a serious issue but dealing with them won't save a medical service that just does not exist for disabled people.  Charities can't plug the holes and shouldn't , for it's humiliating and degrading to realise that to get what you need you have to beg for it.

And the only thing people do in this country when they are angry is phone up Joe Duffy!  and he is as rude as hell and won't be changing anything ....we need to get onto the streets to protest.  but no....that's not what this population does. years of subservience to Church and state has groomed people into sheep!  They will be shorn , fleeced, but they won't protest.  It's quite sickening.