Ireland - 21st Century
Quote 'We are a modern society' unquoth. Enda Kenny Taoiseach, Ireland 2012
When - during the scandalous revelations of the Roman Catholic Church in Ireland.
of our modern society i wish now to state too, that to be modern is to be an Open society.
to be Modern is to be equal with the citizens of the state, not autocratic but democratic.
what is democratic about ordering a citizen of this state what she should do with her private accommodation when she is a disabled woman.
if an able bodied person buys a property and decides to change it about according to her/his need does some semi-state body ever come on board and say 'no you cannot, absolutely no you cannot.'
Tell me, this is a property for which they will demand i hand over property tax in the coming year.
if they make me have a wet-room, that is the health service executive, is this property mine or theirs?
if they foist this against my will and my home is changed about against my will can i say that i have had Free will to do what i like with a property to which i hold title deeds?
if i have not had free will the state, aka the health service executive have redesigned my home against the owner's wishes or consent or without any dialogue whatsoever.
I mean NO DIALOGUE whatsoever.
the person in question who demands this is a HSE manager of this area.
I have not met her
She has not met me
she has not seen my tiny property.
She has not assessed it or me.
She has not demanded this same adaptation of my twin sister who has the same disability but the twin has Dr. in front of her name.
How too can you consider it democratic if you try in vain to get people to listen to you or talk to you.
my list includes:
the Area Manager Social Worker, again HSE who is supposed to speak to her clients and was at a team meeting about me where i was present.
The Area OT manager who will not speak to me, answer any phone calls/messages, mail or agree to meet me with my twin sister or disability advocate.
the Hse area will not convene a team meeting so that i can speak with the people whom i am told 'manage me!'
yes, another HSE official says i am 'managed' by this area primary care team.
and my 'case manager' is the person who shoots me monthly with a jab of vit b 12 because surgery has lopped away the part that absorbs this vital vitamin.
this 'case manager' was requested by me to convene a meeting and arrange this, but this case manager told me that the 'team' felt it wasnt required.
so the team decides, the OT decides and I am not allowed speak to anyone.
I am being 'managed.'
effectively i have no voice.
I am just 60yrs of age.
I am of sound mind.
i paid all taxes when i ever worked.
i bought a house, independently of any male or other.
i acted for myself in choice, solicitors, surveyors, estate agents and i moved my belongings from one county to another by myself without aid of family, social services or other.
just myself, my disabled twin and two wheelchairs and an adapted van.
once i removed myself from physical danger in another area after again, the HSE managed me there and managed to persuade me to move but never managed me enough to see where another organization (the county council) placed me - disaster, 'we didn't handle this rehousing well,'
Well. No they didn't.
children shot at me.
so ann fled like a war victim, to be revictimized again in this county area by again the HSE area managers of the same ilke, the HSE area OT manager!
tis grand to manage people isn't it.
Like Enda manages our country and our finances etc.
its grand to manage it and when it goes pear shaped to blame someone else.
when the HSe finally couldn't manage me or my situation enough to get me out of danger they sign me off as 'this is a housing issue not a health issue.'
you would tend to flee away from danger when that area had been exhausted wouldn't you?
i fled, into the arms of the next HSE lion-ess.
the area manager HSE occupational therapist.
I will be glad when someone manages to eradicate the HSE which has known now to be above its station and 'unfit for purpose'
i will have put it into the public domain of social media that one person for sure fully understands this meaning.
that is, the HSE is unfit for purpose.
it destroys lives and will reconstruct my home against my will - all because i am disabled and applied for an adaptation grant, legally mine and supposed to help me not destroy my psyche in the process.
what this grant will mean that my home will not be what i had envisaged.
i will be able to wash with utter ease, all four limbs still effective and a full wet-room for a quadroplegic in place - just in case!
but i shall open the hall door with my own legally held hall door key and see the Area Managers reconstructed home for me, not my home and later in the year i shall be asked to pay the property tax on a property i bought for 208,000k and yet the public health area Occupational therapist will not allow me adapted the way i wish when i too know my disabilities.
you would be a fool not to know your own disabilities.
when you dont know them, then you are of 'unsound mind' and can be legally certified.]
I know my disabilities, and it isnt only my legs that are the problems.
i also know what causes a lot of my disability, the Health Service Executive, which gives me more headaches than the doctor recommends.
Property tax - to pay or not to pay?
will i?
should i?
why?
why should i?
pay the property tax after what the government has done to my property - against my will.
AWNYAH TODAYSAY Ann living in the Republic of Ireland and it is not a good thing. We have now ratified the EU convention on the rights of people with disabilities, yet we failed in ratifying the optional protocol, allowing us ability to make complaints to the EU under the convention, with little facility to do so in our own country. We go unheard in every sense of the word. This is unjust and leaves us more vulnerable and open to abuses. We are suffering. I am suffering.
Tuesday, January 8, 2013
Monday, January 7, 2013
Funny HAha Funny Peculiar!
It isn't either...it isn't funny...it isn't that peculiar, as in strange, different or odd.
we are in the majority of the minority.
those of us with a disability.
As i live in Ireland i can only speak for the situations that arise here.
i have no doubt it is far worse than i even know, many many do not speak due to fear.
Many abroad may think Ireland benign, charitable and caring.
many in Ireland think very differently, especially if they are disabled.
Lets not mince and mixed the words anymore.
its too hard to be disabled in Ireland.
It is a crime to treat the less able the way we do as a nation.
it is a wicked crime to discriminate and violate the rights of those who can only whimper in the corner when injustice has been done and continue to be done.
both my twin and i have known this.
we have been on the receiving end of discrimination, violation of rights, even the rights that Ireland have signed up to in the european union and in the united nations.
I hate it.
i hate being Irish.
because of what Ireland and the government do to us, twins who have little and who can effect little change in our lives and circumstances.
tell me please how many worldwide would put up with knowing that they can feel their bodies disintegrate and can be told that others know it as so, and yet, the modern expertise is not being applied to find out why.
no testing is being done on identical twins who are using powered chairs now and do not know why their muscles are wasting nor why they have to use all sorts of aids just to do what ordinary people take for granted.
How can science and medicine in the Republic of Ireland stand by and let us degenerate like this without any consultant grasping the nettle and trying to find out why?
We are known as great educators, and people from far and wide come to ireland for the medical education that the Royal College of Surgeons, Trinity college, University college Dublin, Cork University and Galway University and many others give to non nationals. Yet...for twins, we are not helped...at all!
ONe pathologist in Beaumont Hospital holds us in the hollow of his hands, for he has promised to look at my DNA again, to look at the common mitro deletions and see if its the make up of our DNA that might have mutated.
but he is out on his own.
there is no collective thinking on this one.
just one man bravely trying to source why we continue to go down.
London UK discovered enough for a process of knowing but when we return home to our country we can do nothing more with any bits of knowledge gleaned in London.
Thousands upon thousands have been spent by twins traveling over.
the thousands are now gone.
we didn't have to do this, we feel we, as citizens of Ireland should have been treated as we were in London.
London treated us with care, consideration and with skill.
but even with the limited time they had on our bodies, and our appointments there, we had to come home.
we were only flying over for consultations, one hospital stay apiece and some bloods.
London wants us back over for more testing.
both of us --- together, as identical twins.
how can we get somebody in this government to chalk on the dotted line that they will consent to have us in the centre of excellence to be examined to find out why our muscles are wasting and all our organs being 'taken out?'
they have not the expertise here, we know this.
so if they don't, isn't it in the constitution that we are allowed travel?
so why cannot we then travel?
because simply, someone has to give us permission to do so.
if this isn't the case. Please someone let me know how i can get over to london soon and fast.
we beg of those who read this blog, give us the information that will get us out of Ireland and back to London or even to America.
we are lying up in our respective homes, just lying on our sofas because we are weary, ill, tired and unable, - to move.
i want out of Ireland.
I can say this but thats all i can do.
i can type it but thats all i can do.
i can beg but thats all i can do.
i am no pilot, own no jet, own no Dail headed notepaper.
i am only me, lying on a sofa by a coal fire and waiting to die, from what, i do not know.
and my twin is lying on her sofa, by a coal fire and waiting to die, from what - well she doesnt know that either.
we are in the majority of the minority.
those of us with a disability.
As i live in Ireland i can only speak for the situations that arise here.
i have no doubt it is far worse than i even know, many many do not speak due to fear.
Many abroad may think Ireland benign, charitable and caring.
many in Ireland think very differently, especially if they are disabled.
Lets not mince and mixed the words anymore.
its too hard to be disabled in Ireland.
It is a crime to treat the less able the way we do as a nation.
it is a wicked crime to discriminate and violate the rights of those who can only whimper in the corner when injustice has been done and continue to be done.
both my twin and i have known this.
we have been on the receiving end of discrimination, violation of rights, even the rights that Ireland have signed up to in the european union and in the united nations.
I hate it.
i hate being Irish.
because of what Ireland and the government do to us, twins who have little and who can effect little change in our lives and circumstances.
tell me please how many worldwide would put up with knowing that they can feel their bodies disintegrate and can be told that others know it as so, and yet, the modern expertise is not being applied to find out why.
no testing is being done on identical twins who are using powered chairs now and do not know why their muscles are wasting nor why they have to use all sorts of aids just to do what ordinary people take for granted.
How can science and medicine in the Republic of Ireland stand by and let us degenerate like this without any consultant grasping the nettle and trying to find out why?
We are known as great educators, and people from far and wide come to ireland for the medical education that the Royal College of Surgeons, Trinity college, University college Dublin, Cork University and Galway University and many others give to non nationals. Yet...for twins, we are not helped...at all!
ONe pathologist in Beaumont Hospital holds us in the hollow of his hands, for he has promised to look at my DNA again, to look at the common mitro deletions and see if its the make up of our DNA that might have mutated.
but he is out on his own.
there is no collective thinking on this one.
just one man bravely trying to source why we continue to go down.
London UK discovered enough for a process of knowing but when we return home to our country we can do nothing more with any bits of knowledge gleaned in London.
Thousands upon thousands have been spent by twins traveling over.
the thousands are now gone.
we didn't have to do this, we feel we, as citizens of Ireland should have been treated as we were in London.
London treated us with care, consideration and with skill.
but even with the limited time they had on our bodies, and our appointments there, we had to come home.
we were only flying over for consultations, one hospital stay apiece and some bloods.
London wants us back over for more testing.
both of us --- together, as identical twins.
how can we get somebody in this government to chalk on the dotted line that they will consent to have us in the centre of excellence to be examined to find out why our muscles are wasting and all our organs being 'taken out?'
they have not the expertise here, we know this.
so if they don't, isn't it in the constitution that we are allowed travel?
so why cannot we then travel?
because simply, someone has to give us permission to do so.
if this isn't the case. Please someone let me know how i can get over to london soon and fast.
we beg of those who read this blog, give us the information that will get us out of Ireland and back to London or even to America.
we are lying up in our respective homes, just lying on our sofas because we are weary, ill, tired and unable, - to move.
i want out of Ireland.
I can say this but thats all i can do.
i can type it but thats all i can do.
i can beg but thats all i can do.
i am no pilot, own no jet, own no Dail headed notepaper.
i am only me, lying on a sofa by a coal fire and waiting to die, from what, i do not know.
and my twin is lying on her sofa, by a coal fire and waiting to die, from what - well she doesnt know that either.
Monday, December 24, 2012
berries and bury
well tis christmas, and we drawn to the red berries for the birds on prickly branches, berries for the turkey of a sauce and berries as in cheery cheery drunken cheer of all that it means, Christmas.
Christmas, a time to welcome the family. celebrating the joy of birth and rebirth, to offer christian action, (even if it's this one family dinner) and then my friends retire:
back to the hangover
back to the far flung countries
back to work
and for a lot - back to turmoil, sickness, strife and loneliness and this final 'back' is actually not so 'back' but 'continue'.
The ban has been lifted and i am allowed be present at a family dinner!
Woa, until one time in the following year when i lose favour again and believe me i will..the ban will resume in many ways.
Right now i consider and look back at the year - the year i was deemed a criminal for shouting for help to get a puppy dog off the road, which resulted in the home help walking out and never returning.
Resulting too in the home help provider saying i was too dangerous to allow staff in my home.
Resulting in this Christmas i am left all alone to do my chores, light my fire, build my fire and carry coal buckets for a full two weeks.
the different home help provider has left me high and dry.
Because she is careless.
Another difference i have to face with the identical twin, all because i have asperger syndrome.
THAT IS ALL!
i have asperger, poor communications and i am discriminated against for this presentation. A presentation that gets worse when i am very distressed and tired.
Lets see what else i had to face over the past year -
the adaptation grant - a manager Occupational therapist in the wicklow area has decided in her wisdom i should have a wetroom, this being against my will and unnecessary and i seemingly have no say in this matter and she will not meet with me or speak to me.
The distress of this cause me to postpone the grant process until the very last minute.
A deep trench mark the boundaries of the extension and yet i still have this fight into the new year to retain the bath.
this is still leaving me stressed and worn out with sleepless nights and a christmas fraught.
to know too that the community primary care team run from me as i try to clear my name and because of this my the distress is too vocal.
Try to have my home the way i want it for all the other disabilities, the Disress is noted, i am far too vocal.
So not even the social worker will speak to me!
I am far too vocal and the manager of this area will rather speak to twin about me but not to me.
even thought this vocal distress is borne out of prejudice and injustice as i am treated far worse than twin. No one ever gave me a chance in this county.
this county has done things to me that i never experienced in my last.
this county is Wicklow, the land of milk and honey, the 'garden of Ireland' many coming in the following year will take trips into the garden and admire all the beauty that is here in abundance.
What they wont see is the very provincialism that is rife within the irish psyche,supposedly our educated people.
the ones leaving university with a degree in occupational therapy who say the reason why i need a wet room is because i have a neurodegenerative disorder and the reason why twin doesn't is because she has parkinsons!
we have team care providers withdrawing staff from a sickie, who once had a history of BEING in the psych system but never having a psychiatric illness. She suffered depression due to social isolation. No higher form of professional was asked of my 'danger status' and so i am blacklisted forever, as no consultant who could assess me as being dangerous or not was proffered, in the absence of a fair trial, i am blacklisted.
when one is deaf and raises her voice in alarm, it is seen as 'danger' aaaaah, "get my home help worker out of that place!"
to be considered a tyrant is dreadful.
imagine waking daily to understand that the educated nurses, occupational therapist, and all consider you a danger, and you are avoided.
the woman who stayed close to her home and never went out.
the woman who never saw a person ever from day to day and now finally who wants to do this, having arrived in a new home, new country with my my first efforts in freedom has been stymied by this county that in no other words can describe as ' bog irish ignorant'
i have to deal with the emotions of fallout, resulting in further trauma.
i wake knowing that i am unloved by family, neglected by family, avoided by the care team and also having things done to my new home which are violently against my will.
also knowing that a neighbour four doors down has pulled her staff for no good reason.
in all this i am powerless to effect change.
there is nothing i can do if the professionals will not lift phones, meet me even with support, or discuss the way forward.
there is nothing i can do to clear my name or even get a basic care package in for me, which doesn't require a battle like this, being left for christmas without home help cover for a full two weeks, and when i try to ask my PA workers to fill the void, there is nothing i can do when they refuse to answer the phones, a situation that happens when they dont want to be free for work.
This is about as subservient as you can get.
This is about as poor as you can get.
there were times i wanted even yearned to go see the doctor for support, but he resides in a different county and i was too poorly to drive over.
this county found not one doctor agreeing to take me on.
a fact shocking beyond shocking. this not because of my personality presentation for they never even allowed me one consult, but on hearing all that is wrong with me, they wouldnt have me!
when ignored in life how can you have even a good life, how can this equate to quality in the 21st century when the world is awakening and knows such things as autism spectrum disorders, but such modern thinking has not hit holy ireland.
Ireland with stigma and ignorance leaves ann, without the means to celebrate her first christmas here in her home as the build was delayed as we fought over the bath.
no wheelchair as the ramp has not been put down.
no home help because ann screamed trying to get the twin's dog off the road. Ann with a mobility difficulty and found it impossible to do this without help from home help who was inside.
a christmas knowing that the fight will resume in the new year but right now - i have no home help cover for christmas and the twin does, and i am just as sick.
i despair and am very very depressed.
there is no point in pretending it other.
i will not be able to enjoy christmas, with the weight i have on my psyche of being disliked and avoided in my new county.
where getting help is doubly as difficult as it is for my twin.
and i beg to differ, in saying it should not be so.
when you are sick.
Christmas, a time to welcome the family. celebrating the joy of birth and rebirth, to offer christian action, (even if it's this one family dinner) and then my friends retire:
back to the hangover
back to the far flung countries
back to work
and for a lot - back to turmoil, sickness, strife and loneliness and this final 'back' is actually not so 'back' but 'continue'.
The ban has been lifted and i am allowed be present at a family dinner!
Woa, until one time in the following year when i lose favour again and believe me i will..the ban will resume in many ways.
Right now i consider and look back at the year - the year i was deemed a criminal for shouting for help to get a puppy dog off the road, which resulted in the home help walking out and never returning.
Resulting too in the home help provider saying i was too dangerous to allow staff in my home.
Resulting in this Christmas i am left all alone to do my chores, light my fire, build my fire and carry coal buckets for a full two weeks.
the different home help provider has left me high and dry.
Because she is careless.
Another difference i have to face with the identical twin, all because i have asperger syndrome.
THAT IS ALL!
i have asperger, poor communications and i am discriminated against for this presentation. A presentation that gets worse when i am very distressed and tired.
Lets see what else i had to face over the past year -
the adaptation grant - a manager Occupational therapist in the wicklow area has decided in her wisdom i should have a wetroom, this being against my will and unnecessary and i seemingly have no say in this matter and she will not meet with me or speak to me.
The distress of this cause me to postpone the grant process until the very last minute.
A deep trench mark the boundaries of the extension and yet i still have this fight into the new year to retain the bath.
this is still leaving me stressed and worn out with sleepless nights and a christmas fraught.
to know too that the community primary care team run from me as i try to clear my name and because of this my the distress is too vocal.
Try to have my home the way i want it for all the other disabilities, the Disress is noted, i am far too vocal.
So not even the social worker will speak to me!
I am far too vocal and the manager of this area will rather speak to twin about me but not to me.
even thought this vocal distress is borne out of prejudice and injustice as i am treated far worse than twin. No one ever gave me a chance in this county.
this county has done things to me that i never experienced in my last.
this county is Wicklow, the land of milk and honey, the 'garden of Ireland' many coming in the following year will take trips into the garden and admire all the beauty that is here in abundance.
What they wont see is the very provincialism that is rife within the irish psyche,supposedly our educated people.
the ones leaving university with a degree in occupational therapy who say the reason why i need a wet room is because i have a neurodegenerative disorder and the reason why twin doesn't is because she has parkinsons!
we have team care providers withdrawing staff from a sickie, who once had a history of BEING in the psych system but never having a psychiatric illness. She suffered depression due to social isolation. No higher form of professional was asked of my 'danger status' and so i am blacklisted forever, as no consultant who could assess me as being dangerous or not was proffered, in the absence of a fair trial, i am blacklisted.
when one is deaf and raises her voice in alarm, it is seen as 'danger' aaaaah, "get my home help worker out of that place!"
to be considered a tyrant is dreadful.
imagine waking daily to understand that the educated nurses, occupational therapist, and all consider you a danger, and you are avoided.
the woman who stayed close to her home and never went out.
the woman who never saw a person ever from day to day and now finally who wants to do this, having arrived in a new home, new country with my my first efforts in freedom has been stymied by this county that in no other words can describe as ' bog irish ignorant'
i have to deal with the emotions of fallout, resulting in further trauma.
i wake knowing that i am unloved by family, neglected by family, avoided by the care team and also having things done to my new home which are violently against my will.
also knowing that a neighbour four doors down has pulled her staff for no good reason.
in all this i am powerless to effect change.
there is nothing i can do if the professionals will not lift phones, meet me even with support, or discuss the way forward.
there is nothing i can do to clear my name or even get a basic care package in for me, which doesn't require a battle like this, being left for christmas without home help cover for a full two weeks, and when i try to ask my PA workers to fill the void, there is nothing i can do when they refuse to answer the phones, a situation that happens when they dont want to be free for work.
This is about as subservient as you can get.
This is about as poor as you can get.
there were times i wanted even yearned to go see the doctor for support, but he resides in a different county and i was too poorly to drive over.
this county found not one doctor agreeing to take me on.
a fact shocking beyond shocking. this not because of my personality presentation for they never even allowed me one consult, but on hearing all that is wrong with me, they wouldnt have me!
when ignored in life how can you have even a good life, how can this equate to quality in the 21st century when the world is awakening and knows such things as autism spectrum disorders, but such modern thinking has not hit holy ireland.
Ireland with stigma and ignorance leaves ann, without the means to celebrate her first christmas here in her home as the build was delayed as we fought over the bath.
no wheelchair as the ramp has not been put down.
no home help because ann screamed trying to get the twin's dog off the road. Ann with a mobility difficulty and found it impossible to do this without help from home help who was inside.
a christmas knowing that the fight will resume in the new year but right now - i have no home help cover for christmas and the twin does, and i am just as sick.
i despair and am very very depressed.
there is no point in pretending it other.
i will not be able to enjoy christmas, with the weight i have on my psyche of being disliked and avoided in my new county.
where getting help is doubly as difficult as it is for my twin.
and i beg to differ, in saying it should not be so.
when you are sick.
Monday, December 17, 2012
a walk in the Black Forest and bloody twinklies
there is no doubt about it, its a dark place to be - the forest, any forest especially in dead of winter.
when a forest can be the sea shore in december, a bright day in june or an autumn day of living, when its dark its dark and can get very dark indeed.
where was our drowning out of light for us twins today?
it was wet, blustery and mild, a nice trot on the strand in greystones, but a weepy one which required a gentle prod and tap on the back, two sticks stuck in damp sand as useless legs, tried out the stepping.
three dogs happier than two humans.
they ran amok and we watched.
but dampened down were we, with the ongoing struggle of our decline, too early in life and not knowing what is going on.
where is the biopsy piece of your body twin?
its in Kings and needs to get to Queens.
where is your body part Twin, well mine is in Newcastle and now is being tested for common mitro deletion whatever that is.
but maybe we may never find out what is wrong.
but certainly complacency on the part of medics is not helping as twins are stuck in the middle of communication errors and one consultant not making the request for body part and the other thinking the other was taking care of this and no, secretaries are not involved so what do you do then, months later, you give a body part, you pay for having that done and you are now minus any results from testing, thus far.
not the fault of the body part giver.
if they want any more when we are dead and interesting will they get it?
highly unlikely as they have not helped us when alive.
they cannot expect my brain to investigate once i am dead when they make my life an utter misery when alive.
why should i be a body donator when dead because i am rare and could be interesting to science.
NO, my will of leaving it is fast eroding as twins slap sticks in damp sand and weep together.
what else happened today...one got stuck in the toilet twice, a small cubicle with twins in it together, the one sitting on needed damp cloths to brow, a massage of back, a fan of the scarf twin holds in front of her, this because one is about to pass out due to wrong food and crohns and ceoliac, one twin made a major departure from a very strict diet.
this has a cause and effect, biggun.
right world, we are in economic crisis, but does that mean the individual gets lost in misery because of this?
where is thy neighbour in all this and when will thy neighbour ever consider more than self and basically get up off arse and tend to the less able.
I really am angry that we do not do more for each other.
the disability agenda is there, what is known is there, where there are deficiencies we KNOW and darn all done about it.
YOU CAN make a difference but you have to voice and you have to act.
do not expect change without effort.
nothing comes by putting the bum on a soft pillow of sofas and warming by the fire or in the bed under blankets.
nothing is achieved by silence and inertia.
nothing is achieved by making pals with people in high places in order to maintain the status quo.
you have to bark to alert the intruder in disabled peoples' lives.
making enemies for a good reason is better than making pals for no results at all, if the pals be at the top and have an agenda to effect change, then they have to be made aware that those of us who can, will not pander to them but make them work FOR THEM>
i am not liked terribly much and i am saddened by that.
but what i have tried to do was effect change for the better of my own personal life.
this i did and i lost out on many things in doing so but i did effect change away from gun slinging children.
i was in the centre of a violent community of drinking men, a woman alone and apart.
i needed out.
but it destroyed many things in my life but now i am safe at least.
i am angry here that far too many people sit by and do not act to help the least able.
i am furious that twins in the 21st century are left alone in Ireland, very alone with little support anywhere, this is within the community, closer community and the broader agenda of health in ireland.
neglect is the word.
as one limps by and helps the other as we shall always do.
but i am livid it has to be so hard slap in the middle of middle class ireland.
this is the ethos now of living beings.
Walk by and do not accept the responsibilty for less able.
just walk on by and forget that we are killing souls, wishing our elderly dead and depriving our disabled of equal rights through massive health cuts.
depriving the least able is what Hitler did.
he killed them all off in gass chambers.
is there anything different today i ask, not a lot.
we are starved in body, soul, spirit and freedom and that is what Hitler did, but he did it the fast way.
i am angry
we have absolutely no health care at all...no means of getting around, no physio, no psychological help for one of the twins, no pain management, no real help in the home but lazy home helps who shave off fiveteen minutes and do as little as possible leaving the disabled behind in effectively not much better than when the home helps arrive.
there is no monitoring of this service.
we have nothing but fresh air to live on and spirit, we have that in spades.
and i have no twinkly lights for the christmas tree, there were far more pressing issues to deal with and at the end the pleasure gets left out when time doesnt allow and energy definitely is not there.
we are a weak and sad country all round.
when a forest can be the sea shore in december, a bright day in june or an autumn day of living, when its dark its dark and can get very dark indeed.
where was our drowning out of light for us twins today?
it was wet, blustery and mild, a nice trot on the strand in greystones, but a weepy one which required a gentle prod and tap on the back, two sticks stuck in damp sand as useless legs, tried out the stepping.
three dogs happier than two humans.
they ran amok and we watched.
but dampened down were we, with the ongoing struggle of our decline, too early in life and not knowing what is going on.
where is the biopsy piece of your body twin?
its in Kings and needs to get to Queens.
where is your body part Twin, well mine is in Newcastle and now is being tested for common mitro deletion whatever that is.
but maybe we may never find out what is wrong.
but certainly complacency on the part of medics is not helping as twins are stuck in the middle of communication errors and one consultant not making the request for body part and the other thinking the other was taking care of this and no, secretaries are not involved so what do you do then, months later, you give a body part, you pay for having that done and you are now minus any results from testing, thus far.
not the fault of the body part giver.
if they want any more when we are dead and interesting will they get it?
highly unlikely as they have not helped us when alive.
they cannot expect my brain to investigate once i am dead when they make my life an utter misery when alive.
why should i be a body donator when dead because i am rare and could be interesting to science.
NO, my will of leaving it is fast eroding as twins slap sticks in damp sand and weep together.
what else happened today...one got stuck in the toilet twice, a small cubicle with twins in it together, the one sitting on needed damp cloths to brow, a massage of back, a fan of the scarf twin holds in front of her, this because one is about to pass out due to wrong food and crohns and ceoliac, one twin made a major departure from a very strict diet.
this has a cause and effect, biggun.
right world, we are in economic crisis, but does that mean the individual gets lost in misery because of this?
where is thy neighbour in all this and when will thy neighbour ever consider more than self and basically get up off arse and tend to the less able.
I really am angry that we do not do more for each other.
the disability agenda is there, what is known is there, where there are deficiencies we KNOW and darn all done about it.
YOU CAN make a difference but you have to voice and you have to act.
do not expect change without effort.
nothing comes by putting the bum on a soft pillow of sofas and warming by the fire or in the bed under blankets.
nothing is achieved by silence and inertia.
nothing is achieved by making pals with people in high places in order to maintain the status quo.
you have to bark to alert the intruder in disabled peoples' lives.
making enemies for a good reason is better than making pals for no results at all, if the pals be at the top and have an agenda to effect change, then they have to be made aware that those of us who can, will not pander to them but make them work FOR THEM>
i am not liked terribly much and i am saddened by that.
but what i have tried to do was effect change for the better of my own personal life.
this i did and i lost out on many things in doing so but i did effect change away from gun slinging children.
i was in the centre of a violent community of drinking men, a woman alone and apart.
i needed out.
but it destroyed many things in my life but now i am safe at least.
i am angry here that far too many people sit by and do not act to help the least able.
i am furious that twins in the 21st century are left alone in Ireland, very alone with little support anywhere, this is within the community, closer community and the broader agenda of health in ireland.
neglect is the word.
as one limps by and helps the other as we shall always do.
but i am livid it has to be so hard slap in the middle of middle class ireland.
this is the ethos now of living beings.
Walk by and do not accept the responsibilty for less able.
just walk on by and forget that we are killing souls, wishing our elderly dead and depriving our disabled of equal rights through massive health cuts.
depriving the least able is what Hitler did.
he killed them all off in gass chambers.
is there anything different today i ask, not a lot.
we are starved in body, soul, spirit and freedom and that is what Hitler did, but he did it the fast way.
i am angry
we have absolutely no health care at all...no means of getting around, no physio, no psychological help for one of the twins, no pain management, no real help in the home but lazy home helps who shave off fiveteen minutes and do as little as possible leaving the disabled behind in effectively not much better than when the home helps arrive.
there is no monitoring of this service.
we have nothing but fresh air to live on and spirit, we have that in spades.
and i have no twinkly lights for the christmas tree, there were far more pressing issues to deal with and at the end the pleasure gets left out when time doesnt allow and energy definitely is not there.
we are a weak and sad country all round.
Wednesday, December 12, 2012
budget blah and woolly hats
SO much of this country is simply ...WRONG.
and being in the thick of depression as we are now people are actually beginning to do the 'step over him/her' trot.
Literally, its everyone for him/herself now and the feeling that its there, the feeling OF it, is sensed by everyone.
all are wrapped in envelopes of protection, against the world, yet in the world, for oneself and darn to everyone else in it.
a trash time to get the coppers mentality and a trash time of self pity too of 'i am having it real tough, no one understands how tough it is for me.'\
actually most do understand, but couldn't care less if you are or not.
we are walking away from hurt and pain and suffering of our fellow human beings instead of collectively shoring each other up in this time of need.
here is an example...i visit an elderly neighbour and find him wearing a woolly hat and no heating on...he is aged 97yrs old and recently out of hospital.
who will ever see this man as meaningful or purposeful or necessary now.
I do for one, and i do so cos i feel the suffering of being cold and being worried.
this man is iconic of Ireland ALL of ireland. COLD.
brain dead and very cold.
and 'the woe is me' syndrome goes further.
i woke today dreading it.
i slept on the sofa until 4am, restless, depressed and physically in pain and mentally out of my brain with worry.
How can i manage on what i am expected to manage on?
You can tell people what you have and what you have not, no one will listen or acknowledge you or your own circumstances, they have their own.
you lie restless knowing there isn't anyone you can turn to, you have become isolated, weary and no amount of suffering will alert others to this fact. they have their own.
so you don't go to bed.
you scream inside, yearning so badly to be relieved of the depression caused by worry.
you do not want those few hours, if you get them of release in sleep only to wake, realise you are suffering and then burst into tears, knowing a full day is ahead and pretty much as yesterday was and the next day and the next.
there was a film once called 'the glass menagerie' i watched it as a young person on black and white tv.
it was about a young learning disabled girl who hit behind her four walls and collected crystal ornaments. when i saw the film i suddenly 'knew her' and never forgot her.
this is why i visit the elderly and have done since aged 18.
there is something in everyone, even if to most is meaningless.
but on a personal level you know too, that you are indeed very much like the elder man and the younger lady. there is a bit of me there on either end of the age continium.
dont forget who you are. you are a bit of everyone walking abroad.
but last night and every night i do know and understand the dilemma of worry, an economic and personal financial crash.
you also know about trust and about cheating and about distasteful people who are very real and you never knew they existed.
you know each day will merge one into the other.
that no one will phone to ask how you are or even visit with a cheery smile to chat.
you know this never does happen ever, not regularly and certainly so infrequently we are measuring this in months not days.
never to have the phone ring.
never to have a meal brought to your door in friendship and concern.
never being asked 'is there anything you would like me to do for you.'
never being asked out, for that meal, or stroll on the prom cup of tea.
Never being given much of anything that in whats called once, a christian society would have been most available. The little things that make the difference, as ringing someone is in the scheme of things, 'little.'
to understand hardship, sickness, disability, lonliness and isolation all wrapped up in one is about the hardest an individual can face on a daily basis.
so remember, hardship is in the 'feeling of it.'
and each person is the sum total of everyone else. So no different.
but what is different, what makes us what we should be, (intelligent beings), is the capacity to feel for another.
right now what i see, is a trotting by carelessly and a stepping over others with contempt, carelessness, lack of charity and lack of concern.
we are losing ourselves to a deep 'SOUL DEATH' and inaction is happening when a gentle touch of care in a small gesture or small gift is enough to lift a vulnerable person to the level of maybe even considering that 'its worth it after all'
dont wrap up your troubles in a small personal envelop, go out and share em, and chat with others and discuss the possibilities of getting out of trouble and sharing ideas for the collective, to get out of trouble, and these are things we can do, and we may have something to offer the other.
we usually do...if only we would SHARE the gifts we are lucky to posess.
sorry for the preachy tone, but the days have been dreary and i believe needlessly so.
most cannot overcome or triumph on their own.
most need a nudge up from others.
and being in the thick of depression as we are now people are actually beginning to do the 'step over him/her' trot.
Literally, its everyone for him/herself now and the feeling that its there, the feeling OF it, is sensed by everyone.
all are wrapped in envelopes of protection, against the world, yet in the world, for oneself and darn to everyone else in it.
a trash time to get the coppers mentality and a trash time of self pity too of 'i am having it real tough, no one understands how tough it is for me.'\
actually most do understand, but couldn't care less if you are or not.
we are walking away from hurt and pain and suffering of our fellow human beings instead of collectively shoring each other up in this time of need.
here is an example...i visit an elderly neighbour and find him wearing a woolly hat and no heating on...he is aged 97yrs old and recently out of hospital.
who will ever see this man as meaningful or purposeful or necessary now.
I do for one, and i do so cos i feel the suffering of being cold and being worried.
this man is iconic of Ireland ALL of ireland. COLD.
brain dead and very cold.
and 'the woe is me' syndrome goes further.
i woke today dreading it.
i slept on the sofa until 4am, restless, depressed and physically in pain and mentally out of my brain with worry.
How can i manage on what i am expected to manage on?
You can tell people what you have and what you have not, no one will listen or acknowledge you or your own circumstances, they have their own.
you lie restless knowing there isn't anyone you can turn to, you have become isolated, weary and no amount of suffering will alert others to this fact. they have their own.
so you don't go to bed.
you scream inside, yearning so badly to be relieved of the depression caused by worry.
you do not want those few hours, if you get them of release in sleep only to wake, realise you are suffering and then burst into tears, knowing a full day is ahead and pretty much as yesterday was and the next day and the next.
there was a film once called 'the glass menagerie' i watched it as a young person on black and white tv.
it was about a young learning disabled girl who hit behind her four walls and collected crystal ornaments. when i saw the film i suddenly 'knew her' and never forgot her.
this is why i visit the elderly and have done since aged 18.
there is something in everyone, even if to most is meaningless.
but on a personal level you know too, that you are indeed very much like the elder man and the younger lady. there is a bit of me there on either end of the age continium.
dont forget who you are. you are a bit of everyone walking abroad.
but last night and every night i do know and understand the dilemma of worry, an economic and personal financial crash.
you also know about trust and about cheating and about distasteful people who are very real and you never knew they existed.
you know each day will merge one into the other.
that no one will phone to ask how you are or even visit with a cheery smile to chat.
you know this never does happen ever, not regularly and certainly so infrequently we are measuring this in months not days.
never to have the phone ring.
never to have a meal brought to your door in friendship and concern.
never being asked 'is there anything you would like me to do for you.'
never being asked out, for that meal, or stroll on the prom cup of tea.
Never being given much of anything that in whats called once, a christian society would have been most available. The little things that make the difference, as ringing someone is in the scheme of things, 'little.'
to understand hardship, sickness, disability, lonliness and isolation all wrapped up in one is about the hardest an individual can face on a daily basis.
so remember, hardship is in the 'feeling of it.'
and each person is the sum total of everyone else. So no different.
but what is different, what makes us what we should be, (intelligent beings), is the capacity to feel for another.
right now what i see, is a trotting by carelessly and a stepping over others with contempt, carelessness, lack of charity and lack of concern.
we are losing ourselves to a deep 'SOUL DEATH' and inaction is happening when a gentle touch of care in a small gesture or small gift is enough to lift a vulnerable person to the level of maybe even considering that 'its worth it after all'
dont wrap up your troubles in a small personal envelop, go out and share em, and chat with others and discuss the possibilities of getting out of trouble and sharing ideas for the collective, to get out of trouble, and these are things we can do, and we may have something to offer the other.
we usually do...if only we would SHARE the gifts we are lucky to posess.
sorry for the preachy tone, but the days have been dreary and i believe needlessly so.
most cannot overcome or triumph on their own.
most need a nudge up from others.
Saturday, December 8, 2012
BREAKDOWN...BREAKDOWN...BREAKDOWN....
This is a considered email of a person i know,
an email sent to every TD she has been in contact over these past few years as a person with severe disabilities.
Please see her breakdown of her basic payment through Disability Pension :
in total
Payments Deductions
Flat 193.50 Phon: 20.00
Fuel 20 ESB: 15.00
Laa 7.70
Tot Pmts 221.20 Total Deductions 35.00
Total amount received 186.20 THIS IS WHAT I AM LEFT EACH WEEK TO LIVE ON - not including deductions made now for the following:
Prescription medications :
Lyrica
morphine patch
paracetamol
mepacrine
sulpha quinnine
entocort
eltroxin
macular degeneration meds 18etooth paste to save teeth as effected by sjogrens syndrome 17e
rivitril
nexium
fish oils - brain nourishment 10e
eye drops gel
drops
creams
ceoliac pasta/cornflakes/breads eradicated from med list 25e per week at least (no tax rebate as i do not work)
12 chargeable items now TREBLED in cost leaving a bill per month for myself of - 19e monthly
Cost of my medication per month will now be 18e
17e
10
25
19
_____________ 89.60 per month in costs.
my weekly pension after deductions at source is now - 186.20 if i divide my med bill in four i will then deduct again from this the sum of
22.25 leaving me with a basic living fund of 103.95e
this does not include Coal
- van insurance - petrol
- VHI payment ( i certainly could not quarentee best practise for crohns surgery to the public health sector with the high incidents of post-operative infections, my first surgery nearly saw me die in @@@@@ from post op infections, see their latest rating on this matter)!.
- phone bill.
please explain to me how on earth i am to live on this?
in the last few budgets i saw my basic rate of disabilty pension cut twice and an increase of medication payments.
to consider major items for my disability have already been funded this year
- repair to my mobility scooter - 500e
- acquiring a Lidl rollator 99e
- spoon and knife 37e I refused to pay this - specialised protective clothing in summer as the sun rays are so damaging to Lupus patients
- specialised wrap around sun glasses to protect eyes from sun, loss of moisture and cornea damage - see conditions above.
- back supports for computer chair.
- hearing aids E1.500e eachwhat you have done to me has beggared me
threatened my peace of mind
put the fear of god into me for my future
left me cold this winter (there isnt any oil in the tank at present)
i am fearful of best medical practise at the mercy of a very suspect local hospital.
I hope you sleep well in your bed tonight after seeing the above detailed outpouring of one sick individual living alone in this state where the European charter for people with disabilities has not been ratified, when all other european states have done so.
if anyone call inform me how a person can live on this with the cost of living here in Ireland higher than most of the rest of europe and add on taxes, levies, and so on so forth.
this is one individual and there are many many more that this goverment has brought to its knees in utter terror.
this email had received no acknowledgement this morning and i will await with held breath to see if one comes, on second thoughts maybe i should not, for i then would surely die for lack of oxygen.
Don't you just love politicians especially the ones devoted to being Leftish creative, eg our labour party?
Labour, you will never get my vote again ever. If i can help it, neither will people with disabilities ever believe you are on our left side serving us, the ones who depend on good decisions being made on our behalf.
Thursday, November 22, 2012
very few shades of colour in disability
you get simply one colour and it is called - TIRED...does it have its complete complimentary, yes, ALIVE.
and being disabled is just about as dead as you can get, inside.
but not because you are you...
...you can be VERY PROUD of 'you' but you can not be ALLOWED to be proud.
the most we get is wait for it and do not be alarmed...the most we get it...ABUSE.
there are many colours to this one we do know that.
the worst being, your word...that is, YOUR word.
are you believed if you say a reasonable statement in arguement, no.
are you considered sane often? no.
the professionals can dress in any shirt or dress, they are a collective evil against equality.
they ban together like glue in order to support each other one with the other against...the individual, in this instance, the disabled.
how many disabled people are believed in a case of a health dispute?
if you say 'well, actually she left me without...'
'ah no she didnt, you are imagining that, ' or 'i believe my' oh yes.
in other words, you are a pathological liar with murderous intent with violent tendencies, when even you raise your voice in distress.
when you raise your voice in distress, its called being 'abusive' in my country.
if you complain and ask for review on the person who wronged you the review gets twisted so badly it ends with, 'this review finds that in order to get...you have to apologise first!'
yes!
so someone may have said or done something to or against you as a disabled person and you put in a complaint, only to find that the review decided that you brought all this on yourself so if you want them there services, apologise and you will get em...
there is one thing i can say about my country ireland, it was born on the back of deceit and we lived and survived by wit alone, decades of it, since cave times, a little island going no where fast had to try to survive in the rise of the powers all around, how they did that was by back handers, sliming, deceit and in modern day, brown envelopes and back handers.
and the collective rounding on others to save face.
do i believe for instance that faith SHOULD BE PLACED with the HSE TO hold enquiries into what happened a young woman denied the right to abortion and so die, no i dont.
in a small part of ireland on the other side of the same country, a disabled person has been so demonised within a snuff of a request for review you would think that person is the devil incarnate.
if you think i say wrong here, you can ask for an eminent person in another country, as we say, an independent witness if i personally say wrong here, that person will say...no.
i have watched the process, and seen how bad it is becoming.
we are what we are, a vicious, conniving, self serving, grovelling little pest of a country who no more has honest peoples' lives in their heart than our friend who is frying down there in hell..that one with the horns and fire.
and being disabled is just about as dead as you can get, inside.
but not because you are you...
...you can be VERY PROUD of 'you' but you can not be ALLOWED to be proud.
the most we get is wait for it and do not be alarmed...the most we get it...ABUSE.
there are many colours to this one we do know that.
the worst being, your word...that is, YOUR word.
are you believed if you say a reasonable statement in arguement, no.
are you considered sane often? no.
the professionals can dress in any shirt or dress, they are a collective evil against equality.
they ban together like glue in order to support each other one with the other against...the individual, in this instance, the disabled.
how many disabled people are believed in a case of a health dispute?
if you say 'well, actually she left me without...'
'ah no she didnt, you are imagining that, ' or 'i believe my' oh yes.
in other words, you are a pathological liar with murderous intent with violent tendencies, when even you raise your voice in distress.
when you raise your voice in distress, its called being 'abusive' in my country.
if you complain and ask for review on the person who wronged you the review gets twisted so badly it ends with, 'this review finds that in order to get...you have to apologise first!'
yes!
so someone may have said or done something to or against you as a disabled person and you put in a complaint, only to find that the review decided that you brought all this on yourself so if you want them there services, apologise and you will get em...
there is one thing i can say about my country ireland, it was born on the back of deceit and we lived and survived by wit alone, decades of it, since cave times, a little island going no where fast had to try to survive in the rise of the powers all around, how they did that was by back handers, sliming, deceit and in modern day, brown envelopes and back handers.
and the collective rounding on others to save face.
do i believe for instance that faith SHOULD BE PLACED with the HSE TO hold enquiries into what happened a young woman denied the right to abortion and so die, no i dont.
in a small part of ireland on the other side of the same country, a disabled person has been so demonised within a snuff of a request for review you would think that person is the devil incarnate.
if you think i say wrong here, you can ask for an eminent person in another country, as we say, an independent witness if i personally say wrong here, that person will say...no.
i have watched the process, and seen how bad it is becoming.
we are what we are, a vicious, conniving, self serving, grovelling little pest of a country who no more has honest peoples' lives in their heart than our friend who is frying down there in hell..that one with the horns and fire.
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