The Meaning of 1916 for ALL citizens of the REPUBLIC of Ireland

I am Irish.  I am proud to be Irish. I came of parents who were of protestant (father) and Catholic (mother) tradition, Both proud to be Irish. Dad my protestant father never failed to share his Irishness. All through the Northern Irish 'troubles' my father did not argue, engage or otherwise voice an opinion. Neither did my mother. neither did the children. We were not political. We just got on with living. We declared ourselves Irish.

I lived in Ireland until 18 years old. I left in 1971, those years pre EU where Ireland had nothing to offer girls except nursing and secretarial work and 'the bank'. Yes, Dad wanted me to go into the bank. It was the ideal girls job. I wanted to go to nurse at Great Ormond street children's hospital. That's where I went at 18. I returned to Ireland age 57. I came 'home'. Its where my heart always was. I WANTED to 'come home'.

I wanted to die in Ireland. To see if I could in my last days offer anything to MY country.

Being sick and disabled I soon realised my country is not a country for sick and disabled people. Or poor people, or old people, or homeless people, or travellers, or refugees. The people of Ireland do care about others but within certain parameters only. Protesting loudly only for free water but not health care. trying to get any protest about what is happening disabled people is virtually impossible and the media just don't want to publish anything at all. It simply doesn't 'interest' people. Well, it seems that way. Being sick and disabled in Ireland is a nightmare. you cannot feel 'free'.

50 years ago I was 13.  It was the 50th anniversary of 1916. We celebrated. My school, the Convent of the Holy Child Jesus in Killiney, Co Dublin, was run by an English order of nuns. A 'posh' school then and now, but I was a 'charity case', my parents could afford little. middle class in status but not in income! we were 'posh poor'. Many don't even know we exist. An uncomfortable and unhappy place to be. Accepted by neither the 'posh' nor 'the poor'.

The Nuns were quite close to 'feminist' that you could get in those times, educated, open, and wide in the breath of teaching. Mum chose to send us there because she told us; "they wouldn't try to convert your father". they didn't, nor did they try.  These English nuns took us to Dublin Castle to see the exhibition of 1916. we did 'projects'. Here is mine and twins 'project'.  Our 1916 scrap book.

I am forced now to consider the 'proclamation' of 1916. Those words of our first leaders. They wanted ...and they PROCLAIMED for all Irish people...declared 'equality', 'rights', 'opportunities', 'happiness' and 'prosperity' in an ethos of 'cherishing' all citizens of this new Republic of Ireland.



" The Republic guarantees religious and civil liberty, equal rights and equal opportunities to all its citizens' and declares its resolve to pursue the happiness and prosperity of the whole nation and of all its parts, cherishing all the children of the nation equally. "

But now 100 years later, our leaders have betrayed us. and we are still celebrating. Such a 'celebration' feels dishonest to me. None of our leaders have lived by this Proclamation. Over the years we were divided not protestant against catholic , that largely did NOT happen in the Republic but rather 'rich against poor'.

Health was divided between the haves who could afford insurance and a better health service and the poor who could not so had to, still have to,  rely on a substandard, increasingly so, public health system. Yes, in this 'equal' republic you can buy your hip replacement, your physiotherapy, your quick appointment, x-ray, MRI , but on a public list wait a year or more for 'equal' to happen!

The division between rich and poor goes right through Irish alleged 'REPUBLICAN' society. the wealthy have housing, the poor do not. Indeed public housing has decreased and whilst bankers beggared this country they got off scot free, with huge stashed away lolly to retire for the rest of their lives, whilst the poor are thrown out by bailiffs of the Banks wanting more money back!

Our young are emigrating in droves as I did age 18 in 1971, when there was nothing to offer...there is STILL nothing to offer. Hail the REPUBLIC, that proclaimed 'opportunities, happiness, prosperity'.

Suicide has risen exponentially to the politics of 'austerity' which is NOT an Irish Republican ideology but a German devised EU economic takeover of a sovereign nation, yet our leaders don't see this. Where is the 'independence' of 1916 now? Where sovereignty? Where is the freedom from a nations control? First it was the English, now it is Europe, but really Germany and France. We are not free, nor sovereign , nor a RUPUBLIC.

The Irish heart has changed over the 100 years. still generous but growing weary, the poor, the less well off, the old, the disabled peoples are now seen as burdens, a drain on the economy. We apparently get too much 'free' care (benefits) , too much help, too much...that the nation cannot afford. We should therefore die. 'happiness and prosperity' is only for the productive , the ones who can contribute to the economy'. Those of us who apparently don't contribute (but you see, we do, because ALL our doctors, nurses, carers, etc... all have a job and income off our backs- but they forget that) should die.

Soft euthanasia I call it. They think with us ignored, shoved in the background, starved of services...will die and save the glorious REPUBLIC's money. This is not, despite the proclamation, a nation for ALL.

I may sound bitter, or angry or ungrateful but I prefer to call myself honest.

This is the only honest analysis of an Irish Republic that had the principles of equality, opportunity, happiness, prosperity, for the whole nation, not just a section of it, that simply was a one day wonder, on that day it was read a 100 years ago.

I feel absolutely sure this is NOT the Irish Republic that was envisioned by

Thomas Clarke, Sean Mac Diarmada, Thomas MacDonagh, Patrick Pearce, Eamonn Ceannt,  James Connolly, and Joseph Plunkett. Signatories of the Irish Proclamation 1916, on behalf of the Provisional Government of the Irish Republic to the People of Ireland.

 Ann and Margaret Kennedy Fight for the 'proclamation rights of 1916

That's me on the right holding  the Irish flag...yes, back to front, upside down... perhaps symbolic of the failed 'Republic'.

Coming Home To Ireland

For 42 years I lived away from Ireland. I left in 1972 as many young Irish girls did...to go nursing in Great Ormond Street Children's Hospital. I had wanted to be a children's nurse - THERE - only there, since I was age 12. It was my deepest hearts dream.

I got there, but it was bittersweet as my deafness and family 'baggage' caught up with me. I had a very tough time from age 18 to about 30. Repairing Irish damage. But repair I did, success followed. not as a nurse, but as a social worker, trying to protect disabled children from abuse. Alongside supporting adults sexually abused and exploited as children or as adults, by Christian clergy. And proudly my life's work, which was short, 20 years, was hugely valuable to many suffering people.

 

Then as if blighted, illness befell me and quickly....no more work...a devastating blow as age 50+ high achiever, just getting going, just completed a doctorate. Slow to start, early to be stopped. The frustration knew no bounds.

Ann Kennedy (left) & Margaret Kennedy; twins with mitochondrial disease

 

I made a decision to 'come home' to Ireland.  Years of getting on the night 'mail boat' from Dun Laoghaire, and later flights from the airport,  taught me the hardship of emigration. The pain of waving to your twin and your father, the only two who really missed me. The only two who ever said "goodbye", or "welcome home". I saw their heartbreak.  Both wanted me home.  Dad was forever asking; "when are you coming home?"  Was now the time?  Dad was gone, dead...Ann, my twin, wanted me home.  I saw that I had no work to do in the UK and thought I'd come home to know Ireland, to stay in the land of my birth.  To be HOME when ill and suffering.  I had always missed Ireland. green is our blood.

There's no doubt about it...the Irish love Ireland...or they love the idea that is Ireland. that leprechaun mystery place.  the worldwide sentimentality of Ireland appeals.  The capitals of the world turn green every St Patrick's day. every capital goes green for ...US.  Why?  sentimentality. a wish for the fairies, the craic, the Irish.  We seem to 'have' something.  something we GIVE to other countries.  Yes, we do GIVE.  I gave to Britain. I thought I might come home and GIVE something to Ireland.

But Ireland rejected me.  Why?  because I was sick, disabled, needy.  I had been ill in the UK, Parkinson's disease was diagnosed. I got brilliant care. I was well supported by the NHS. The public service.  I was a patient of a top neurology department in London. Then I came home...because my heart was here.  After all my 'goodbyes' I wanted to be HERE. I didn't know that Ireland's public health care was non-existent. I didn't know.

But my heart was breaking in my ill health. I needed to 'come home'. I thought my comfort would be here.

I wanted to know Ireland. Be part of Ireland. get to know my nephews and nieces, their children.  I had a dream of family. I had a dream of fun and laughter with a new generation. I feared being alone in London and I thought I would not be alone here. After-all this was my country, they were my family. It would be good. Wouldn't it?

It was not to be. The HSE is not the NHS that's for sure.  the mentality of care is not 'holy' Ireland, far from it.  I learned in the last 6 years that the HSE is far from 'saints and scholars'.  I've never met such cruel people as I have in the HSE.  I'm still trying to absorb whether the cruelty is malicious or ignorance...I cannot figure it out. at all. Or is it political. The politics of Nazi euthanasia by stealth so begun in Germany in the 1920's and 30's with the belief we sick and disabled people are "useless eaters". or could it be (trying to put my caring slant on this) that HSE staff are overwhelmed by the lack of money to do what their hearts desire - to care, but cannot, they blame us for their frustration. its called scapegoating.  We, who seem to 'ask for too much' which they cannot provide, hurt them. They hurt us in return. How dare these sick and disabled "useless eaters" ask for anything, let alone more! How dare they make us feel impotent. How dare this government put us in this position. At the end of the day its not politicians that are blamed, its us, the sick and disabled person. Everyone seems unhappy.

No-one but sick and disabled people themselves see this pernicious undercurrent in the worldwide health care systems, increasingly so, as the world embraces economic priorities over public care.

But, naively, I thought IRELAND would be different.  Little did I know Ireland would be maliciously worse. Is this from our 'Holy' upbringing. That perverted Christianity that was NOT of Jesus. Where scapegoating of all oppressed groups was rife. Where poor boys were sent to industrial schools, poor girls were sent to Magdalene laundries, where pregnant girls were mercilessly treated as scum whilst the boys who made them pregnant scuttled away on the boat, or stayed protected. It was the girls fault. always is. and where the clergy routinely sexually abused and brutalised the boys and the girls...and got away with it. Is THIS what we learned?  Is THIS where the Irish brutality was born? now seen in the inheritance of collective cruelty towards the homeless, sick, disabled and poor.

So how 'worse' is it.  It's bad.  I came home to a non-existent health care system. Now diagnosed with a very rare disease, both twin and I are largely wheelchair users. We have Mitochondrial Disease. Which involves the degeneration of our energy 'organelles' which in turn destroys our muscles, brain, heart, lungs, bowels...you name it...mito kills. We have Parkinsonism, Muscle Myopathy, metabolic disorder, Dystonia, Auto-immune disease, we are ill, disabled. Being a 'rare' in Ireland means being alone. Despite the 'Rare Diseases plan' document, there is NO RARE DISEASE PLAN!

Mito patients in Ireland have no services , no consultant who knows what they are enduring. No care that is holistic, co-ordinated, unified or safe.

We are afraid. Because no-one knows what Mito is. Let alone knows how to treat us.

This is beyond scary, this is a nightmare. And because there is no understanding the HSE treat us as if we are 'making it up'. They don't believe it. But is this a way to avoid the care we need? By deliberately 'not understanding' they can deliberately deny.

I still await a powered wheelchair that meets my need. I still await special shoes. I still await physiotherapy, I still await ....almost everything...that could make life worth living. But the HSE are well skilled in denying. They just know how to do it. They know how to deny, but at the same time say they are providing. Their skill at doing this knows no bounds. They just have the skill to say they are proving when they are not. boy, can they write a good - devious - letter!  It is the Irish way.

I do not understand the Irish HSE. I've never seen this deviousness before. In all my years of nursing, social work and lecturing in the UK I've never experienced this deviousness. NEVER.

Its positively toxic. An undercurrent of evil that no-one wants to speak about. Whilst we turn a blind eye, sick and disabled public patients take the pain of it. We are being targeted as scapegoats for a sick and evil health system. Do we see the parades of protest? No. Nothing. Nothing at all.

As for 'family' , what of the young generation? I hardly see them. I know I don't 'register' on their 'caring' mind. I know that. I am an older, not that important Auntie, great Auntie. The fact I cannot go to see them because I'm ill, disabled...makes no impact. They still don't come to see me. Christmas presents lie in my spare room, for a nephew, his wife and children...still ...Where are the younger generation that could uphold my spirits?  well, they are not.....here. Its very sad.

The Ireland I thought I was coming home to is just....not here.
 

The complainer is mad, the complained about is sane...I dispute that emphatically!

In order to have your needs met in Ireland you must become a 'professional' in disability, health, law and advocacy!  You can no longer assume you will be 'cared' for if sick or disabled.

For our health service, called the HSE is now simply a service that works to deny you any service at all! The ENERGY used by the 'skilled professional service' (sic-quote the HSE manger in my case) is solely on managing how NOT to provide a service.

So what service am I asking for?....well on the scale of things not that much:

1. A powered wheelchair I can use
2. Physiotherapy, which is on-going, effective and helps me to be pain free for dystonia , arthritis and more.
3. special shoes
4. PA support to live life to the full, equally and purposively
5. support to live independently.

I have recently had to obtain ALL my files from the local HSE services who purport to 'care' for me.

Here they are!  I am one client. I am asking for support as a sick, elderly, disabled person living independently and there are 18 files on me.

I am going through each file with a fine tooth comb. And I find the evidence of mismanagement, of disregard, of cynicism, of defamation, breaches of confidentiality, and more. Comments are made without fact. In fact, it seems, anything goes!

Reading these documents the 'tone' of my professional 'carer's' are less than caring...almost vicious, certainly cold, cool and angry.

I believe certain people are lying to cover their backs , redaction of large swathes seem suspiciously unnecessary. Thus telling me the cop out of ' protection of 3rd party information' under section 37 (1) is being misused to allow persons to 'say things about me - without me' knowing!

 

In some places there are many pages 'redacted' , as much as 6 pages, 10 pages, which can only mean a report about me (since this file is only about ME - its my file).

 

I find that letters to TD's or senators or even An Taoiseach are answered with 'economy of the truth' with a slant towards portraying me as 'difficult', 'obstructive' and 'challenging'. Well, that perception is theirs. I call it 'intelligent' responses to a broken service.

 

e.g "she refused the new wheelchair without even trying it".  Yes I did because it did NOT have automatic tilt facilities, was NOT an outdoor wheelchair, which I needed, and was a cheep basic powered wheelchair not suitable to me needs. I know wheelchairs I research wheelchairs. I am not stupid. Nor had I , by the time of the offer, had a proper wheelchair and seating assessment.

 

"she refused wheelchair/seating assessment at .....hospital" , yes I did, because that hospital is NOT a recognised wheelchair and seating assessment establishment nor independent of the HSE. I wanted to go to an INDEPENDENT, specialist wheelchair and seating establishment. My right.

 

It now almost impossible to get TDs or Senators to do more than just 'write a letter' and to actively challenge HSE service provision. They send the first letter  and you are delighted to finally find someone who will 'fight your corner' but quickly you find...ah...no...they only want to write ONE letter. And when the HSE respond that I have had an 'expert, skilled and fully professional service' the elected politicians take this as gospel. It is NOT in their best interest to make enemies of the HSE management.

 

The minister for Health Leo Varadkar has refused to meet me and says he cannot intervene:

       

Under the health act 2004, the Health Service executive) is required to manage, deliver, or arrange to be delivered on its behalf , health and personal social services. Under section 6 of the HSE governance act 2013 bars the Minister for Health from directing the HSE to provide a treatment or a personal service to any individual or to confer eligibility on any individual.

 

So, in fact the Minister for Health is NOT in charge of health.  So why is he intervening in getting hospital A&E's serving individuals but not us in the community?

 

It was a nice Act, that 2013 Act, simply barred any ministerial oversight of the HSE in local communities.

           

Ditto charitable bodies...they write the first letter...then quickly back off. Why? because its NOT in THEIR best interest to upset the HSE from whom a large proportion of funding for their charity emanates from.  Better not 'bite the hand that feeds you', sort of thing.

 

so where else can you go?

 

We disabled, sick people could go to the equality tribunal. An entity in name only. Most cannot afford the solicitors fees to be represented there. and even if the tribunal says its an 'informal, almost like mediation, all round the table like civilised human beings stuff...no its not!

 

you NEED legal representation and few solicitors take on the HSE and few do pro bono work. You'll find yourself faced with the full force of HSE barristers and solicitors across the table. I know. Been there.

 

What about the Human rights commission?  Well that has been almost completely devastated by cuts to the service. you can wait years to be even considered. I know.

 

What about 'Your Say - Your Service', the HSE complaints body... Any complaints you make to the HSE are handled by HSE managers, of the very person you are complaining about! You invariably don't 'win'! You cant win. its designed for you NOT to win!

 

and if you make too many complaints you are deemed a 'serial complainer' under the vexatious policies...and in both mine and twins case made so without even being informed, which is against policies and illegal!  Such that I complained about being called a serial complainer and for ONCE my complaint was upheld by the ombudsman.

 

They didn't get away with THAT little ploy.

 

You might say the 'relationship' between the client and the carer's (HSE) has irretrievably broken down...yes it has. seriously so.

 

Trust has been broken by the behaviour of an intransigent, bullying entity that the HSE has become.

 

So what happens the sick, disabled person denied any support, care or compassion by the HSE.....

 

They are referred to psychiatry....the last attack on the difficult, challenging, ungrateful sod of a client. They are mad, yes, defo....that's it.

 

Gotta be MAD to fight with the HSE.

 

My 'paranoia' of the HSE is rooted in evidence. I have the evidence but Ireland being Ireland I wouldn't be at all surprised if those of us who complain are sent to some new 'asylum'.