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'.  

 

 

 

 

 

 

 

 

 

 



Taoiseach calls out the 'whingers' in society

So he would like to call those of us who challenge this rhetoric that Ireland is 'in recovery!  Calls us whingers!
Perhaps Ireland IS 'in recovery'....but from my viewpoint this is what I have seen....

Increase in suicide rates
Increase in depression and despair
Increase in emigration of younger people and consultants, doctors and nurses
Increase in homelessness
Increase in children homeless
Increase in poverty
Increase in food banks
Increase in waiting lists to see public consultants
Increase in waiting lists for hospital tests
Increase in hospitals waiting lists for surgery
Increase in prescription charges
Increase in abuse in institutions of learning disabled people
Increase in fear ...older people frighted of A&E
                             Disabled people in fear of having to return to institutions
                             Sick people in fear of lack of treatment
Increase of abandonment of those in need by all sectors of society

Decrease in support services to sick, older, disabled people
Decrease in benefits
Decrease in primary care medical services
                              No hospital transport
                               No physiotherapy
                               No appropriate wheelchairs
                               No nursing care in community
                               No, or very poor, emergency cover at night
Scrapping of help
                           Coeliac food off prescription
                            Transportation grant cut
                            Mobility allowances cut

And so it continues...how can this be called 'recovery'? Lives made hell !

This is NOT recovery.

I will 'whinge' until this FG / labour government is gone!

Emotional abuse by Enda Kenny of the electorate will not win votes. It's a disgrace that our leader should be so abusive....do I want him in power? Hell, I do not!

Ireland's abuse of disabled citizens

In 2003 I whistle-blew abuse of learning disabled people at the Brothers of Charity Galway. after which, with prolonged lobbying by myself To Jan Sullivan TD, Kathleen Lynch TD, Alan Shatter TD, all at that time in opposition...and to journalists, especially to Patsy McGarry of the Irish Times who 'blew' the case, there was renewed efforts to get the Healy report, which became the McCoy report (when Healy resigned for personal reasons?)  completed.

 

 

  McCoy 

 It took 9 years!

After that the Hynes report looking into WHY it took 9 years was published. This was an inquiry about the inquiry (only in Ireland!)

In the light of the Aras Attracta case and the Waterford Foster care case we need to examine - 'Has ANYTHING changed?'

                 

 

Some of the HSE personnel involved at the time of the Brothers of Charity abuse case are still around.

Indeed some of the politicians namely Kathleen Lynch was certainly vocal in opposition about abuse of learning disabled people yet when in power herself seemed to lose grip of the issues, if she was interested at all...since now we find she and her colleagues DID know about abuse in the foster care case in Waterford a few years ago, yet only now does the public know about it through yet again, two whistle blowers.

Is it the case that Kathleen Lynch merely used the Brother of Charity case as political fodder in her back bench role and search for power? I have a sickening feeling in the pit of my stomach that the opposition FG ministers were doing just that...for why did Kathleen Lynch not as vigorously take up the cudgel for the foster care victims when in power as she did for the Galway victims as backbencher? does power silence politicians? it seems so.  

Very quickly after the McCoy report and the Hynes report, things went very quiet. 2010 this committee meeting in the Oireachtas seems to be the last discussion.

http://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=5&cad=rja&uact=8&ved=0ahUKEwjFhbaey-zKAhVBsxQKHTVhACIQFgg9MAQ&url=http%3A%2F%2Foireachtasdebates.oireachtas.ie%2FDebates%2520Authoring%2FDebatesWebPack.nsf%2Fcommitteetakes%2FHEJ2010062900003&usg=AFQjCNHRtFj8tPhuN7FVIMyYMGOD62kdaQ&sig2=QV2gn69H3fSlugwETtwhAg

But as you read this committee proceedings you could be lulled into a false sense of security that the HSE had now learned its lessons in 2010.  Just read the positive slant on all they are allegedly doing.

Did it last only during the furore of the Brother of Charity case? For only as long as there was public scrutiny?

We also know that the HSE and the Brothers of Charity published an additional report at the time 'The Murphy & Mulvihill report' which was an exploration of Client Protection procedures at the Brothers of Charity. Indeed McCoy himself set this exploration going as part of his remit as chair of the inquiry.

Within that, the HSE and Brothers of Charity tried to besmirch my professional reputation and only 11 years later, after legal proceedings 2014,  was I exonerated and both agencies had to apologise publically and offer compensation. 

Journalists might like to know that Breda Mulvihill co-editor of the HSE report that besmirched me is still employed by the HSE and was. I believe, though I know little of her role there, one HSE official involved in the investigation of the Waterford foster care case.

 

It seems to me that if you are party to publishing untrue information about a whistle blower in a HSE inquiry report, thus besmirching the reputation of the professional, and found by inquiry (the Brophy report) to have unfairly done so. you should face disciplinary sanction. but no, not in the HSE.

http://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwjFhbaey-zKAhVBsxQKHTVhACIQFgggMAA&url=http%3A%2F%2Fwww.irishtimes.com%2Fnews%2Fsocial-affairs%2Fwhistleblower-who-exposed-poor-conditions-for-disabled-vindicated-1.1650041&usg=AFQjCNG5iOGxpoL94uXiqVqP6fx_MAlE-Q&sig2=8pE_I-MB1s5j7iRdRnzDsw

for all that the HSE said at the oireachtas committee back in 2010 there has been scandal after scandal of abuse of learning disabled people in Ireland. and still covered up by power, and the abuse of disabled people living in community by Hse personnel is still uncovered as a brotherhood/sisterhood of HSE collegiality stronger than the Catholic Church exists. the culture has not changed.  

 

so the journalists might like to ponder that even though the McCoy report/the Hynes Report / Murphy & Mulvihill Report , was SUPPOSED to shake up protection from abuse of learning disabled people in Ireland , that just as the Waterford case was unfolding I was STILL fighting through solicitors with the HSE over their public report 'murphy & Mulvihill' which attempted to destroy my reputation.

does this really sound like the HSE are taking whistle blowers seriously? That abuse is taken seriously?

Does this sound like the HSE and Government have truly changed in attitude towards the abuse of learning disabled people? or other disabled people?

Do we find rather than the HSE existing for sick and vulnerable people, in truth it only exists for itself?

to preserve their jobs, their power, their position?

for the lack of transparency, openness, and accountability only proves a inward looking institution unwillingly for scrutiny.

That STILL ...in order to uncover abuse of learning disabled people in Ireland we must rely on whistle blowers and covert cameras by undercover reporters (Aras Attracta) .

Even HIQA , an organisation I applaud for uncovering abuse in residential care are not doing enough. Or maybe I should say, not 'allowed' do enough!  Where are the resources to truly protect people who have disabilities and are preyed upon by abusive professionals within the ranks of care? and not only in residential care, disabled people are experiencing abuse by HSE professionals even in the community.

That, whistle blowers who are professionals, despite legal protection, are STILL viewed as pariahs within the safety field.

 

That patients and clients, family members are all covertly 'punished' for complaining. Given a worse HSE ride and service when they don't like what is happening and say so.

 

My view has always been that whistle-blowing is the last port of call for a professional and a profound ethical duty. There is no other more moral position a professional MUST take. there is no choice.

So as we approach the elections be under no illusion, politics is not about protecting people, Kathleen Lynch , of all ministers had extensive experience as backbencher throughout the Brother of Charity case , yet in power appears to have 'sat on' information about the Waterford Foster care case.

What did she know, why was no action taken?

Are we yet a 'modern' nation, where we take seriously abuse of disabled people.  No, we are not, because the FG/Lab government again sat on and refused to ratify the UN convention on the human rights of disabled people. 10 years waiting and STILL in 'modern Ireland' (sic)  as we 'celebrate' our 1916 'freedom', one group of citizens namely disabled people, are abused and have little protection. They are not free .

What am I celebrating in the 1916 celebrations?

NOTHING.

New year -new life?

New Years pretend the old is gone and a 'new' has arrived!  It's an illusion and a game we play every January. The game ends within weeks, but you are tunnelled into emotional chaos for a few weeks as you scramble to create 'new' in sometimes dreadful circumstances!

Reality usually wins! Of course there is no 'new' for someone who lives with a disease process no one understands, even your own consultant! When your own country feels medically 'threatening' and admits, by sending you overseas, it cannot care for you, you do, sort of...feel scared!

When you read (yesterday) that on one Parkinson's medication Azilect , you are not supposed to take Tramadol because it can put you in a coma...and are shocked that you've found an explanation for an 'adverse event' that happened in a local A&E a few years ago also is scary!  That my life was saved by ringing a friend to get me out and begging my cancer doc to admit me to a bigger  hospital where a drip was put up to flush it out!

Only yesterday do I alarmingly realise A&E docs don't check counter reactions of drugs given! Since the adverse event I refuse Tramadol as I am on Azilect , yet only last year in the same big hospital A&E docs tried to give me Tramadol! I said I could not take it, but they refused an alternative and I was said to have 'refused treatment'!  They should have known it would/ could kill me!

Moral of the story, don't rely on docs to know drug reactions! Do your own homework,  I was NEVER told NOT to take Tramadol! Or some other drugs too.

Let me return to living in a country where rare diseases treatment, monitoring, understanding is virtually 'stone age'.

It is now suggested I don't have idiopathic parkinson but a weird parkinsonism from 'multiple deletions on the nuclear genes'...in fact defects in my genetics! This was discovered in the UK after nearly 10 years  of my twin Ann and mine , own investigations. ANN's dogged medical research, finding the right doctors...the right expertise, the right tests...put us right up there in the expert hands of overseas doctors! Thank god !

                                                                 The medical detectives

It was not the doctors that helped the patient, it was the patient helping the doctors!

Yet knowing you have a multi systemic, neuromuscular, progressive disease where every system in the body is failing due to 'multiple deletions in the nuclear genes' still won't get you the care you need in Ireland .

A multi systemic disease should be dealt with by a doctor or unit that understands that disease.. Yes? Well no! Not here. We twins are parked all over the shop...if there is anyone available to park us with. 'Park', being a useful word and construct since 'movement/travel' is non-existent. I mean the inertia of dealing with rare diseases in Ireland has brought us only in 2015 to opening a poxy office labelled 'the rare diseases office'....where you can write to be essentially told they don't deal with patients. I kid you not!

In the hospitals ...For brain stuff go to neurologist, for muscle stuff, er...don't know , our neurologist takes that on, metabolic dysfunction....no-one, breathing difficulties...wait a year for tests, another for breathing machine found to be needed...still waiting...dystonia...back to neuro, but no treatment other than a drug which does not work; back to the neurologist who overrules Botox treatment recommended by overseas specialists and doesn't know where to send you for gait foot analysis , foot and shoe assessment, due to dystonic foot inversion! Helpful eh?

Gastroenterologist to look after a gut no longer squeezing food waste through the tubes into po!  But nothing much happening here...'movement' is NOT an urgent medical concept in Ireland ! Either for  
poo or treatment.

Urinary problems as in wet knickers - ah, I've realised some movement does happen...well I got a urologist, true, AND  wet knickers. But that's all.

Visual dysfunction...no-one. Food problems, no- one. Mobility problems...still labouring to get a decent powered wheelchair  and the movement ...in a straight line forward, just does NOT happen.

Yet getting single appointments for single issues is enormously beneficial for only one person...my taxi driver who gets 80€ for each appointment.

We are living in 'la-la' land.   And I don't mean happy clappy either!

'Your allocated 'role' as a Disabled/ill person in Ireland'

I have a progressive, rare neuro-muscular disease . I can walk with great difficulty but largely need a wheelchair. I find breathing, walking, eating, defecating, urinating, sleeping, nightmarish.  I can do virtually nothing without help.

Crossing the threshold from health to illness/disability is a threshold from respect to disrespect. No doubt about it after ten years of illness/disability I am under siege by my service providers trying to ‘beat’ me into a ‘role’ I did not chose. I have rebelled, and still rebel. It’s uncomfortable to agony of existence.

having a difficult test in the UK

 

 

The role is created/moulded by HSE service providers as well as Charity driven service providers for their benefit. Well, they can try, but I’m not one for moulding. I, for one have more professional expertise, achieved more, done more than any of these managers.

                              Speaking in the EU Parliament Brussels

But I have been forced to move from self – control, to powerlessness from employed to workless,  from sanity to insanity, from intelligent adult to childhood again.

I am expected to KNOW the rules of being sick and disabled.  If the HSE or Charities gave you a booklet of those rules and honestly told you what they expected (as opposed to the guff of policies containing brilliant expositions about ‘client-centred working’, listening to the client, working with, partnership with the client – all lies, all gloss, all fake), it would read thus…

(Italicised my responses)

Introduction:

Welcome to the land of the failed bodies. You have failed to stay well, failed to work, fail to earn your income, failed to look after yourself. This failure now renders you at our mercy.

What we provide is out of the good will of the tax payer (who resent paying taxes and the rich don’t) so we have to honour the well people who don’t really want you here, alive. You are now a burden on the state…you have failed.

This means we can only offer what we deem necessary. We expect you to be grateful and joyous as we shore you up as a failed citizen.  You have, after all, plunged this state into the economic mess it’s now in.

Anything you achieved before now does not matter. I care not the good you did, or the skills you have. This is now all DEAD. It matters not.

Rules of your position.

Respect

Please note any worker allocated; you must respect.  (well, I’ll go with that 100%, I’m all for respect - It’s the definition of respect I take issue with. It’s NOT about enduring every shit thrown at you by the worker or manager. More anon.)

Manner and presentation.

You must be courteous, not critical, Calm not irritated. You must NOT complain about ANYTHING. You must NOT shout, lose your temper, get angry, feel frustrated. You must be the perfect, long suffering ill/disabled person. Even in dire pain, even in dire distress, even in dire frustration, even in the face of abuse against you. You must be grateful.

Your illness/disability cannot be used as an excuse to deviate from total, unconditional care of your worker. The ‘care’ you are to offer THEM is regardless of their way of working, regardless of deficiencies or lacking in skills, training or resources. As a person we now control, because you have lost your power to control, we call the shots.

(Well this script has gained strength in the climate of austerity. It is un-manageable when ill, depressed, tired, isolated, trapped…and all things illness or disability can bring. It is un-manageable when the service you need to live a bearable life is not given. It is un-manageable when your illness completely defeats you.) 

Complaints.

You are NOT allowed to complain, regardless of any harm danger or neglect you experience from us.

We ARE allowed to complain about your behaviour.

All complaints will be investigated but be mindful that we know how to deal with complaints and have legions of lawyers and barristers in our complaints department. Furthermore we deal with complaints ‘in house’ so you haven’t a hope in hell, of any objective, professional, independent investigation. We have honed our defence skills. Just don’t even try complaining. You’ll get no-where.

Oh and don’t go to politicians, we have them wrapped around our little fingers and we can easily persuade them of our righteousness over your complaints. 

Multiple complaints will automatically be deemed ‘vexatious’ under our vexatious policies. Furthermore we will not inform you of the vexatious procedures, and will deem you so without informing you or allowing you any representation.

(This I know. Bitterly fighting I have been deemed a vexatious complainer, a serial complainer. But I have been vindicated. An ombudsman investigation upheld my complaint over being called ‘a serial complainer’ I was cleared and the HSE were told to apologise and clear up the mess. They’ve apologised but NOT cleared up the mess. )

 The essence of such a booklet is to put you firmly in the ‘down’ position. The powerless client; the always grateful ill/disabled service recipient. The moulding of your ‘role’ is viciously carved into your very being, from day one.  

Take some examples:

Powered wheelchair provision.

You must only ever accept, expect, second hand crap. You cannot expect either a proper assessment of your needs or a decent new powered wheelchair.

          Part of a delegation of wheelchairs users speaking about crap wheelchair            provision in Leinster house. Did it make a difference - not at all!

These are deliberately NOT provided as they will make you MORE powerful, which the system does not want you to be. They cost money too, and you as a failed normal person, have no rights to ‘decent, new’ wheelchairs.

The system of the ‘well/normal’ has allocated you your role and position.

Imprisonment of mobility is your role. And you are expected to accept this. You have no rights. 

Ha! Ha!  We’ve not ratified the UN convention on rights of disabled people (UNCRDP)….deliberately…Ha! ha! Don’t even try the ‘rights’ tack!

                         Yes...we do try the RIGHTS Track - OUR RIGHTS! 

 Transport provision

The fact buses, trains and DART, aeroplanes, taxi’s,  still don’t ALLOW disabled people travel on equal terms as non-disabled people matters not much to transport companies.  The fact the mobility grant and Transportation grant was slashed is not viewed as a human rights violation. Even though ‘freedom of movement’ is a legislated human right.

You have your role, you see. If we provide, wonderful, if we don’t, tough shit, as a ‘failed’ walker/normal you can’t EXPECT equality of transport. You must go through the hoops of our generosity to get anywhere.

As for transport to hospital appointments; well, that’s your responsibility not ours. Even if we have failed to provide public transport that accommodates your powered wheelchair, you are responsible for getting to hospital.  Even if on a meagre disability pension, you cannot afford the 80 euro round trip to the 4 appointments per month, on average, you are still responsible for getting there.

It doesn’t seem to be noted if I get sicker by missing appointments; it’ll cost more to the HSE budget!

Personal Assistants

The whole ethos of providing a personal assistant (PA) is based on ‘generosity of charity’. It is NOT based on trying to make your life equal to others, or offering opportunities for full inclusion into life, work and enjoyment.  We are NOT obliged to do that since…HA…we’ve not ratified the UNCRDP.

You are NOT in control of your PA service.

PA’s are there to prevent further expenditure on hospital or other community budgets. It’s a win-win for service providers, economically. This being so we ill/disabled people in receipt of HSE or Charity PA’s have no rights about how THEY work.

You are continually reminded of this generosity and this being so; you fear the generosity will be removed. So you fall into subservient silent role very quickly.

·        You don’t question, overly, practice (this is a complaint which you are not allowed to do), you don’t ‘tell’ a PA what to do or how to do it…this is being too bossy for the generosity on offer, too ‘powerful’.

·        If your PA choses to spend 10 Minutes of your precious hour on her mobile phone you cannot complain.

·        If you find her engaged in a conversation over the garden wall with a neighbour whilst ‘working’ for you, you cannot complain.

·        If you find in the supermarket they’ve taken 10 minutes of your shopping time to do their shopping you cannot complain.

The situation is more perilous if your PA is a non-national. For complaints are then considered potentially racist. I was angry with my (stand-in) Nigerian PA today and she accused me of ‘treating her like a slave’; a remark that utterly horrified me.  But is an effective additional weapon in the continual ‘war’ between ill/disabled person and ‘generous’ ‘well/normal’ service providers. I found the 'slave' comment abhorrent. The fact she was black, Nigerian had nothing whatsoever to do with the situation. She was using MY precious allocated time to talk to her children! She was working.

Why was I angry, because as I was looking for a lost purse, with money and credit card and frantically trying to get out shopping in the hour she had to help me…she was on her mobile talking to her children.

PA’s are not allowed use a mobile phone at ‘work’ (but it’s not really work, its generosity so she can do what she wants. I don’t pay for this directly).

I was exhausted after Christmas. I can barely keep up and running around my bungalow looking for my purse, on legs with muscle myopathy was a very, very difficult, distressing task. I just could not do it and was distressed, close to tears.

But if I complained…well I’m not allowed complain.

For any sign of frustration, illness, tiredness that causes you to be irritable, grouchy, or otherwise ‘shouty’ to your PA you are deemed ‘aggressive’. This can even be ‘upgraded to ‘violent’ at the whim of a PA or manager of PA.

Its perception you have NO CONTROL over. And who is ultimately believed?

[NB I’ve never been accused of being violent – but have been accused of being ‘aggressive’! Now I’m probably racist for shouting at my PA today. It’s utterly exhausting defending yourself. ]

You have to be in perfect, pleasant, nice mood endlessly (even in the face of poor or shoddy work, or pain or exhaustion). You are NOT ALLOWED be sick.  The strain of this ‘pretence’ is enormous.

If your PA should cause you harm (whether deliberate or not) in any way, either sexual (a case I have been told about) or damage to your person, a fall due to lack of care…you are in a dire position. Do you, or do you NOT complain? Will the service be removed as you’ve become a ‘complainer’?  Yes, it will…and if removed the next PA is cool to freezing in mood and relationship….for causing a mate ‘trouble’. 

You cannot just sack ‘em and hire another! There are serious ‘repercussions’ in complaining about a ‘generosity’ service.

You have questioned ‘generosity’, overstepped the subservient, controllable role. This is a ‘dangerous’ client, who might ruin the reputation of the agency providing the service or a PA’s job.

Conclusion.

Here lies the awfulness of illness/disability in Ireland. You have no rights, you have no say, you are not treated as ‘equal’. By definition as a client, or service user you just are expected to put up with every bit of shit thrown your way. 

The HSE/Charitable mafia have ways of bending perception to demonise you if you step out of ‘role’. You have no power and no-one, no-one, not even the press (owned by mega rich government friends) or politicians (not in the job for your benefit mate)  or the few well-meaning charities, who do try to respect you, will support you as they feel forced to compromise and walk the other way in any dispute. Why? Because they are largely government/HSE funded organisations. Who would bite the hands that feed them?

NOW ask where is the fighting disability ‘movement’ in Ireland?  Oh we do, small groups, protest outside the Dail from time to time. Its always useless! But at least those of us who turn up are still fighting.

Largely, however, the disability 'movement' has been crushed by the political and HSE /Charity mafia triad of oppression.  There is now no ‘movement of disability resistance’.

It’s exactly how they want it.

Where does that leave me or my fellow disabled/sick brother or sister?

Not in a great place I can tell you!

                                           Not allowed in the FRONT door!