|a very serious and sick 'joke' by the Irish state as it denies its citizens equal rights.|
on all levels i am finding it tough.
the admission that the ratification of the UN convention of the rights of persons with disabilities, will not now take place this side of christmas, something promised this year to great cheer, but deep down many of us had never believed them, that is the gov.
feelings are also running high with decisions of my healthcare and medical care management being made by all and anyone other than myself who seems to have no say in the matter.
this includes, utter denial of how unwell i am with my 'heavy disease burden.' they manage to successfully delude themselves, which they are purposely and intentionally doing to bring the care needs to the lowest common denominator then i am highly anxious that my care in ireland is being compromised.
i am living in a country which is apathetic to the cries of its most needy and vulnerable, i count myself as one.
the consultants who deny me a right to travel out for the expertise and care where once he agreed because now he is somehow pissed off because i found him wanting so he is in effect punishing me.
the denial of the healthcare providers in community care who will not allow us our say even though we have adopted the phrase 'nothing about us, without us.' (that is the HSE claim they embrace that phrase)
we, as twins voiced a really good plan of care, cost wise as equal and parable to any in europe and with no real clinical skills base here we are allowed get it elsewhere.
but we are being denied that too.
also the Irish council of civil liberties has it right in one when they say they know of cases where people have alleged being victimised for standing up to the HSE, this they have written about. this i do know about.
denial too of the worthiness of the HSE which was voiced as dysfunctional by many sectors of society is having a real and heavy impact on those of us who need excellence and care and empathy to live a decent life at the end of our lives.
at present i have a clinically 'heavy disease burden' with no clinicians actively involved in making my life more bearable.
thats it, in one sentence and i could well leave the blog alone at that.
but what i will say when i say this, its terrifying to know for years i have been fighting for better and have got no where.
i could if i paid for it privately get it.
but i am but the shit the hse see me as and the government too for i have appealed to them too for help in getting a care plan together and overseas oversight, alas so far they turn the other way.
all i can hope for now is that the UN gets to know of what is happening here, and will smudge and tarnish ireland for being incredibly negligent in the way it deals with sick people at their mercy.
the UN stands up for the decency of the common man.
i am asking them to face towards Ireland and see it as it is, another broken promise made to them, the UN and all i can say we are a shame to the world with our feelings on our countryman as being next to useless, worthless and too expensive.
our brains tick on well and can be useful, if they chose to not allow us be so they are missing a very viable strong group of able and willing workers of their country and state.
to me right now my feelings are running amok