a seminal year - deep reflecton -Ireland-HSE-Family-Life

In honour and memory of Martin Naughton, left, RIP; with a great friend John Doyle - i may not be as diplomatic, but i am as strident in the protest through - disability activism

Like prison bars - they are on one side (Dail Eireann, in this case) and we are on the other.

fighting a system, with a personal vulnerability can take its toll on your life - all things change in such adversity - such brutish abuse of state bodies.

Passing through hallowed 'Trinity College Dublin,' on a sunny day - you reflect - I was educated in the University of Life.  Food parcels of the 70's did not extend to the College fees.

it was a very difficult year.  As you know we have a progressive neurodegenerative disorder and live towards the end of our lives, in a small and insular country.
SO much decided to go wrong in 2016.  But deep reflection on where we are at in Ireland is needed.
Deep reflection needed, on the value of both the human being, family and the older person is badly needed.
Most of all Deep reflection is needed on how the young and the middle aged are going to treat the least well off, those frail, elderly and disabled in what will promise to be the era of 'post truth' and 'in with the money' and 'out with the so-called wasters.'

Society is taking a 1920/30's look on the most vulnerable again - as the cause of the evils of the world.
Was or is it not really a gross selfishness for those who hold the high moral ground to blame someone else - because they can.
the reality is most of the wealth is held in the hands of a tiny minority in ALL countries around the globe.
the elite and the crooked politicians are forming a new agenda.
those with little means to transcend poverty and sickness are made feel scroungers and will have to have health insurance or they will die - this is the future - it isn't right.

lets go local for a while now and see how this is played out on the ground.
lets look at the divide between those who have the power and those who are sick and have none whatsoever.
the ratification of the rights of those with disabilities, will never change our lives unless we can ditch the amazing 'policy amassing' and start taking action to consider us as half way there to being a human being. Policy will not make us that, but action will.
the fact is - those who have a duty to care - don't want to see us as an equal.
if they do not, that is going to get in the way of any progressiveness.
I have seen no kindness within the institutions of the state this past year.

i was ditched so easily by a neurologist for actually taking him to task for not delivering on three major care plans put to him as our primary consultant and to which he hardly glanced and looked the other way in fact.
i took him to task as well, for ending in ED with profound head disturbance and asked simply "how could a young man with no patients, decide to stick a large needle into the back of my head causing a haematoma without any prior tests to see if this was the right course of action.  Did it fit the description of the issues i had and who gave him permission?"
No, i am not getting an answer, but in the new way of  'lack of accountability' the better option - for him, was to boot me out of his care remit and leave me high and dry in a country that has few neurologists at all.  There is no second chance when a man who has power can act so readily and easily as this and forget that a very sick person had a ligit question but no answers.  We also have the healthcare professionals in complete and utter denial of their roles in caring for the sick and disabled.
i think my case, that of my twin and myself, our issues as Rare diseases individuals, with NO clinical care that is of any use to us, no auxilliary care as in support and therapies in the community had met with - department head followed by another department head, giving me another department to contact and so we must have within one full year touched them all, and still no one has said "i will take charge and see that something is done here."

The system is fractured.  Someone else is always in charge.  They themselves will tell you that Burocracy is very weighty within in, but if they do not change that, nothing changes, if they too complain of how difficult it is to move things along, it is either an excuse (i believe it is) or indeed, its both the excuse not to change and the inability to change because its all such a convoluted mess.

You think you have the right department, look at their brief online within their own website and nothing could be clearer until they tell you otherwise.

Even i found, requesting another dentist at a public health facility caused such a stir and a new raft of abusive phone calls to me, "take him or leave him, he is a good dentist"
they put in place an investigation which takes months and i am left waiting for the answer whether i can get a new dentist and then they say no i cannot and then threaten me if i do not contact them within five days with the two given appointments options i basically will be out that door, but i will be allocated the man 'take him or out the door anyway" and too bad if you are terrified of him.

so we are in a new age, a very new age.

when we look at people in crisis too, many need the help of the services, none more so than individuals who were fleeing a county where they never left and entering another they never even visited, but transfer of care from one community care to another was so terrible it found the county we entered took a very different slant to its new residents than the one we left.
even though the managers base was basically the same, but the dispensing of services were very different.
there were none for us, and we fought all the time, the more we stayed strong and asked for help the worse it seemed to become.
alienation set in to become a vile hatred of the HSE in these parts.
the alienation they set up against twins was intensely felt.
we only wanted one thing - peace calm and care - even that was not accepted as they swiped that with black pen from the files, i was able to go back and see what was there as it was on an email.

we also have dynamic i just found incredulous.
how is it that only two medical documents are on my disability files?
how is it that one of these was rejected as bone fide by a barrister-at-law, no less.  Not  even a medical person rejecting this but a lawyer!
the person who was Dr. was rejected out of hand as being suspect to give a medical diagnoses even though highly respected in her area of professional specialisation.

you cant really win with this sort of thing.
we, in ireland have no mechanism to do so.
you can put in a complaint (mine are papering the walls at this point) but you can be called 'serial complainers' at a drop of a hat.
you can put in a complaint, but i have found few are actually investigated and those that are are investigated 'in house' so you won't get these upheld.
you can put in a complaint and be told to go to the ombudsman's office after that, another 'agency' of the HSE, so no transparency there either.
you can put in a complaint to the Human Rights Commission and mine languishes there for about two years now and nothing done, they are down to the bones of staff and all know by now that route is a useless one.
again we have the National disability authority another agency that is rooted in the core institutions never wavering on the side of the client base.
you can do so again to law but then you won't be able to go the legal route as no solicitor in ireland right now is doing pro bono work so if you poor and sick you are - fucked.

this is called the Irish way, but how the EU can actually allow us be so thrashed defeats me.
some rules do apply because we are within the EU.
you would never think so.

for instance if very sick we can get out under Cross Border Care - but we would have to take out a loan if you are poor on that and hope the HSE pay back.
or you can get out under the E112 Agreement but you cannot if a neurologist refuses to sign the forms, like he did the previous year.

so there are no avenues in ireland right now open to the poor and the sick.
money if you have it will get you cared, treated well and accommodated - outside of that, the morality of care is nil.
you can and will be thrashed.
those who have personalities that are demour, and gentle and have educational status but no money fare better than the emotional, truthful, brash and pained.

one voice of hurt and pain can translate so easily here as abuse and verbal abuse.
and one voice of hurt and shouting can be taken as a personal attack.
a stark reality check hit home when i heard a manager from my last area mention a team meeting in which i evidently 'hurt' my social worker, by naming his career before he returned to social work.
this is now remembered TEN years on, and a lot of water has gone under the bridge.
this tells me one thing.
they forget so quickly the reason of my pain and never ever forget that of their own.  that meeting was held to assist me to safety, this never happened - and they are very concerned ten years on i upset the sensibilities of a social worker, who was a craftsman before he returned to working as a social worker?
doesnt matter that to transcend a comment of such pain and distress which may have been harsh should have been seen in the light of context, why were we having this meeting?
because i was shot at in a social housing unit and i was screaming a heck of a lot of pain to try and get to safety.
so the context of the meeting was the client was in danger, not the social worker.
the social worker was sitting in a position of power and had a job of work to do, i saw he wasn't doing it.
if you name this you get a bad name.
in the end our fabulous health caring system, closed my case file and left me in with alcoholics anyway, men, all men drinking day and night and jumping walls to attack a frail and elder woman and finally she was shot at.
but they closed this case file as being a housing issue not a health issue.
i guess if you were housed there because you had a progressive neurodegenerative disorder, and it went pear shaped once they realised where they had put you, then if they feel like it they can claim its not their responsibility but someone else's.

this of course harks back to the trust of the is discourse, the above opening sentences.
will ireland grow up and take responsibility for anything i wonder?
will there be no end of excuses for the non ratification of the convention of the rights of those with disabilities.
will there be no end of passing the buck from one department to the next and no end to spend, spend spend, on themselves as over and above do not spend on the client base.

the Seanad Bar in Dail Eireann, is a cosy enough place to do business, but bruising experience cannot be bought out through the TD's tab on the slate, its felt by those who cannot afford such luxury.

they call us stakeholders, they, i call are people who would rather drive a stake through your heart and soul before they bother to even consider that that heart and soul is wounded already, sick and sad and hurt and needy.
do they care?
2016 saw me in a pained reality, no they do not care.
this extended further into your personal sphere, as family now are the next generation.
although they all are fabulous young people, we can revert again to the top of this discourse.
priorities are not with the sick, frail, elderly and their older relatives.
the new way is the idolitary of 'individualism' and 'money' and 'me fein.'
but do not look to another to help.

they will too make excuses on how hard their lives are and they have not the time.
i don't suppose my life at their age wasn't hard?
was it hard to queue for the food parcels, which they will never have to do.
was it hard to wash in a basin by a coal fire in a condemned social housing unit for years on end, no hot water and no bathroom?
was it hard to ignore your elderly neighbour or do some voluntary work while at the same time having your personal hard life, no i couldn't.
i did both, i did shopping, chatting, caring and visiting the sick and elderly even though i had not two brass farthings to my name and still do not.
how does it feel for the next generation to believe you are wealthy and i can show that young twirp my bank balance of 63c and say 'man of Tokyo - this is what your aunt actually has in disposable cash.'  
do i then see if he will answer?
he won't.
why?
because someone else will be there to answer it and it's not his responsibility to say sorry.
oh for the new age....
oh for our new ways.

yes, about the bitchiest harshest blog i have written, methinks.
i have had the year of the snakes around me here.
there didn't seem to be a place i could look that i saw a way through the irish mire of muck, madness and crookedness, hurt and evil services who trash the stakeholders and give themselves a 131% hike in 'food and sustinence' in a given year from the one before, that is a bonus of 22k, and no one says a word.

this is what 'wasters, slouchers,fraudsters, benefits cheats and a drain on society look like...the coat i wore bought five years ago cost five euros - all things possible - but i am still a waster, sloucher, fraudster and benefit cheat - who can judge those in the x-imperialist buildings beyond?

significant shoe issues dating back to 2009 - these ones are HSE given, see the stitching around the top?  Well, that stitching ripped off my toe nails, yep, these shoes are for a person with a foot deformity, as the orthotist said 'the reason why you had your toenails ripped off is because you claw your toes'  "How so?,"  I answer, "if i claw my toes, how can the stitching above go anywhere near my toes?"  'ah' said the orthotist. Logic? This is Ireland for you and here i place my damn shoes (not worn as too painful) on the tarmac of Dail Eireann, on a visit, not for fun.

so one man within the system did this.  one man was not rounded upon.
but sure as eggs is eggs, the poor are slouchers, beggars, wasters, bleeding the country and fraudsters.

my university of life allowed me five minutes to speak to Europe on living in Ireland, speaking plainly for the first time ever on such a platform, little me holds back nothing - and never will - until i can be there again and announce 'Ireland has reached European standards.'  Until then, i will say it to Europe, - my country, my state continue to trash their sick and provide no real care.

small, ardent and defiant the work continues with our government - persuasion here, protests there, people with disabilities will be at the front of change because they have to be.  we will be there again on the 17th January 2017 - support us, come show a strange face to injustice in this country

the sick are the cause of all our ills so exterminate them.
and the healthcare system is in chaos so let everyone pay for it and if they don't then just go away and die, you are not even half human.
i rest my case, my horns are growing fast.

it can be so 'infantile' and 'simplistic' to even utter "oh dear God, there are the twins again."  the Simple fact is, the let-down of those with disabilities in Ireland is in such grand proportions that two will protest if we have to.
I say, the Horns will grow, and I AM NOT GOING AWAY!

One can be the Academic to learn about how to assess a person for a wheelchair, the other brings the colour in the notice that another has learnt and as a duo we can be a force to be reckoned with.

one thing for sure, don't rest on your laurels.

 I AIN'T GOING AWAY!