Thursday, January 24, 2013

Symbols for hard rock institutions

ah but dont we have em!
the HSE and the RC.

my distrust of these two are self evident.

the ways now of economic driven meanness in the face of sickness and disability, just visited upon us as if we had not enough to contend with.

when a battle for months saw a type of resolution yesterday am i to celebrate an event or change of thinking when it should not have changed in the first place.

I would like you to have seen the charade today in my 'pad.'

the clipboard holders of the HSE officials, the door bell rings, the hands extended, the teeth of youth and the broad brim smiles of one (i never met) and the other a conservative gesture to a summons from a higher official.

upon that summons the two land on my doorstep just 24hrs later.
they shouldn't be here in the first place.

My bath is saved, my building works are to continue on monday.
we fought my friends for months over a bleeding bath.
Of course they argued that it wasn't about money that i should have a whack of a wetroom.
but it was and i know so and knew so.

the two sat down, and one on the wide arm of the sofa had a clip board pressed to her knees.
"you had said a long time ago, that you would sign to say that you would not come back for more"
if that was a gesture of finance over health well take it or leave it.
I explained wryly, Gail, the HSE has now made me pay for your mistake and i am in further debt from what your boss has demanded of me, for my home, MY HOME.

i said no more, i mentioned no signature but gave the impression strong, of how dare you ask for a very very valuable signature when i was still sitting in a home a year later which has carpets down belonging to a dead woman of 97yrs old and i need so badly to have it shaped up for a 60yr old.
Meanwhile the twin has her home all done and gorgeous, right and proper and so should mine.

the battle kept it undone and nearly lost me my adaptation grant funding.
HSE interference on a grand scale, an admittance of 'we do not want you coming back for more.'
admittance that the person who demanded i reshape a home say 'i hope it wasn't one of my staff' actually it was, and she was saying the same today.
they just never learn,

so while i sat down i watched two women with the measuring tapes tape up the shape of my bathroom for the upteenth time,
they ask me to ask the builder to get in touch.
no i wouldnt allow you speak to anyone before you spoke to me!
yes, you can now speak with the builder.

the HSE, shambolic symbol of inadequacy and cruelty, a supposed body for administering to the sick, ill and feeble.

we dealt with another shambolic symbolic conglomerate yesterday, we dealt with the RC.

yep after 11yrs a settlement consult was put in place within the sanctum of the Four Courts.
Eleven  years of hell and after this an insult toss across the barrier rooms of two, on two sides a solicitor and barrister.
i came away with an insult which shocked both my team leaders of barrister and solicitor.
what i do now i do not know.
i do not have to 'take it on the chin' or say to self 'be strong'
i say to most and the others that this world contains people whose only greed and need is adulation, penetration and power.  there isn't much more one can say about men who dress up in garb and swanny around and kiss rings and then go on to abuse.
it isn't religion and least of all is it christianity.  how many have read this bible passed down through millenia.  what has the good carpenter's son actually said "go out and form colonies of men in gold and silk with garments of symbols and status, or 'go forth and do good and do no harm. ' the church today is so divorced from the simple message it beggars belief.
to believe in men with the wee little caps and their capes is nonsensical both in a society that has changed since the renaissance when all this rubbish was embellished, the world is now round and not flat, and people have landed on the moon which isn't made of cheese.
we are a scientific ordered society of chaotic humans, we do need the message for we have lost it in our development but we absolutely do not need men in their black frocks and gold garb.

dispair at the insult would be what i would call my reaction of callous masters of the faith.
they shall never master over me.
one cannot place the hse in the same bracket for their harm has been by default.
what i say of the HSE they need to move with the times, see individuals with disabilities firstly as individuals who still have brains, who still function and who still can make decisions over their own lives.
the sooner the HSE is out of my life the better.
what i need in abundance is - Family and Friends.
and that is not asking much.

Monday, January 21, 2013

to name a county - its Wicklow Ireland

--when one is dealing with our famous HSE (Health Service Executive, which is to be disbanded, sooner i hope than later) this county is not much better and could be worse than the rest of Ireland.

How do i know?
it doesn't take imagination for sure.
they wreck lives and are wrecking mine and interfering on a grand scale.
they are also wrecking my head for months on end, day after day after day.

I spend most of my days, on the phone trying to get a Health service Executive to even answer the phone.
that is before i get to a person who actually will speak to me rather than her secretary.

I am so used to the constant put-downs.
-and the excuses
-and the absences.

we have ABSENCE.

As in HSE execs not turning up for work.

the complaint i have with the HSE in the Wicklow area is i am being forced to have a 'wetroom' in a tiny home, yet i am not allowed my say, not allowed have my home to myself without interference from the state.

I am a private individual who bought a private home and i also have my brain intact to make decisions, not have them made for me - against my will.  This is happening - against my will.

the person who demands this is on 'sick leave' - extended.
the person above her, apparently is only an admin officer who through her secretary tells me another person is dealing with my complaint.

that person is standing in for yet another HSE official who has taken leave, i am unsure if that too is a 'sickie'

when i manage to get a social worker, the senior one in wicklow she tells me she is not my social worker, even though she sat in in my team meeting, but no she is with the section which deals with elder abuse and older people
to which i aptly respond that i am being abused - by her crowd, the Health service executive.

now she tells me i should really be talking to the line managers and when i ask who hers is she tells me she too is out on sick leave!

it doesn't leave many managers left to manage  anything, does it,  eh?

we have been trying to have a meeting set up with the area HSE for months now, but they all seem hopeless and helpless and pass on the tail and thats not a typo, from one animal to the next, remember that game as a child, 'put the tail on the donkey?'
thats pretty much how the HSE works.
this meeting to discuss amongst other matters, a bath.
imagine in a country that has major issues to contend with we are trying to set up a meeting about a bath and we have not managed to get a person to arrange this and most are out sick anyway.  Very unhealthy health service executive workers indeed!

so the person taking over from the person trying to organise this meeting tells me today that she will go ahead and arrange a meeting anyway, i guess with anyone that is left in the HSE to sit by proxy,  but i say to her in Holy Ireland what junior would go against the area manager when it concerned a bath?

none because the area manager would make life hell on earth for the juniors if that did happen.

mother of god i am about to crack up.
no decisions mean it looks like a wet-room will be installed against my will and need in a TINY home, yet my twin with the same disability but with Dr. in front of her name has not been asked or made, actually made, have a wet room in one of her TWO bathrooms.
i cannot afford this space to be taken up.
do you think anyone in Ireland would sort this?
the junior minister for health and her private secretary is in Europe as i type as we hold the presidency of the EU.
well my twin remarked to her department, what the hell are the ministers organizing europe for the period when they couldn't even organize one tiny bathroom!

Please someone get rid of this shower and throw them in some tub somewhere and let it float down the danube or rhine, i don't want these messers in my Health Service Executive.
I actually don't want the HSE in my life and as they say -period.
we have a barmy way of sorting things.
is there anyone with clout reading this, would you please pick up the phone and address my issue of the bath.
if angela merkel reads this or her secretary will she please ask her to ring the Minister for health's office and sort the bath for a woman who once cleaned the bedrooms of the guests in the Hotel international Koln when she was a student.
at least that much i can be afforded after working very very hard in the toilets and bedrooms of very posh guests to her state, including Mick Jagger and diana ross and many others who graced her land.

Thursday, January 17, 2013

cuttin' and pastin' a mighty fist!

PETITION: Stop the Irish Government assault on Disability Equality

To: The Irish Government

We demand the Irish Government stop the assault on Disability Equality by their actions of 'austerity' which is creating lives of misery for Disabled, sick and ill people. We demand the Irish Government roll back the cuts to all benefits and care packages that were begining to create 'equality'...

this is my twin's 'Dr Raging Wheels' petition on 'Causes' and i hope that i have done ok in this pasting up.
she wants us to campagn and rightly so.

ok then i am posting this up in support.
its agonising to be disabled in ireland and i think this is reflected across the world as each new year sees the disabled take the hits more than most.

we need to stop this international worldwide trend here on this small island.

the absurdity of life in ireland now for the disabled is being daily documented by us twins.

we have vowed to note down everything.
our conversations with the HSE personnel.
some of the weird things they say to us.
the things they promise,
the way they pass us off - dont answer the phone to them, fgs is pretty much the standard reply.

the ways they make excuses for professional conduct and yet willingly cut you to size if distress causes you to shout.

by the way, distress shouts are 'abusive' and 'i don't have to take this abuse.\

actually, the shouts we shout are er, distress.

if you wanna know about abuse, take a look at another page in irish history, the church, the magdelene laundaries and all the hse run places for children from which children fled and were never seen alive again.

the word abuse gets abused.

i am not a great friend of much but i hate, utterly hate THE HURT INFLICTED ON THE LEAST ABLE.
lets get them signatures in.
offa now to bed am i.
well, i am in the bed.
night mitz.

Wednesday, January 16, 2013

wet feet, mad brain, HSE

Yesterday i was taken to 'The Life of Pi'  a wonderful film now on at Dundrum, thank you older sis and  husband for making twin and i feel good about life.
a welcome respite from the more normalized terror and despair which is usual!

back to the real world after the lessons learnt at 'Life of Pi' that is, a take on 'endurance.'
I have not a problem with the concept of 'endurance' but i am now well past this concept and the reel of film is running backward and i am screaming out to the winds and rain and the Bengal Tiger!

what on earth did i deserve to be treated so badly?
Again more phone calls to the HSE, all ignored.
this is called my endurance and my lesson and whether it will have a good outcome i doubt it.

they have a policy which i think is mandatory, 'do not engage with the barbarics' that is the sick people and they are in charge of sick people, aka the health service exec - Occupational therapist managers, district nurses, and even the Senior social worker for older people - no less!
no. I have even been told they will not speak to me, answer phone calls, meet with me or have anything to do with me.  I am seriously ill and very unwell and in a wheelchair!!

I went to the solicitor today after having this  nonsense since last february.

Don't try your local Fine Gael office or the Independents or even the Minister for Health with special responsibility for Mental Health.
- the same department shaving off monies for physical health issues from the lesser funded mental health coffers.
I will tell Kathleen Lynch here she has a near suicidal woman on her books and both twin and i have been engaging with her department since forever it seems now.

No one answers phones, either in the Department, the local TD's, the local health centres nor the area managers office.
No one responds to complaints.
No one does - anything in Ireland.
we have answering machines, or 'she is in a meeting, can you leave a message?'  (no i can't actually).  if you do, don't expect a call back.

Its not only horse meat i want to put in the abbatoire at this point.

I have laid it square - if a wet-room is foisted upon this sick woman against her will, the gov will not see any of my money for the now legal property tax we are expected to pay.  (they say anyway they are going to take it out of social welfare by force though, so that may not work), this isnt legal either i should think.

if anyone reconfigures my home against my will then its not my home and i do not own it.
if the HSE reconfigure it, then it is effectively seemingly theirs to do what they like with so they pay my property tax and all that this house requires, even maintaining it.

It has to be illegal for the Irish Department of Health to make a person put something in place into her private home - against her will.
It has to be morally wrong to make her do this without any discussion, ever meeting the person and ever answering the phone to the woman of the house.

they do not even answer phones to the disability advocate nor to the Disability Federation of Ireland or Centre for Independent Living!  Our health service is not obliged to answer any person who is sick, never, or any person acting for a sick person.

when i say wet feet, this is another situation that is going on for years now.
no shoes because they withdrew the funding.
we are in the cold snap which comes in february and a wet patch, my feet were swimming in water as the present shoes have holes in them.
i have deformed feet unable to either afford shoes or even get them in an ordinary retail shop as both feet are completely different to each other in size and shape!

my feet were agony when i returned home cold and wet and frozen after a day out sorting stuff that never got sorted, all around health!  i have raynauds and yes i had thermal socks on, but what good if i have no suitable footwear.

the wheelchair -  yes, these are our permanent assistive aids, these ones that are reconstituted from ballyhaunis, no offense to ballyhaunis but try them, with a bad back and bone structure and  fibromyalgia and all the rest, try them with generalised dystonia, if you don't have dystonia by the end of the day, you will have after clinging clamped in one of the HSE's cost cutting apparatus from victorian times.  Also double the dose of morphine when you get home.
these are permanent for my twin and i.
On irish footpaths, try this one.
McEnroe 'you can't be serious?'  WE ARE!

to be told by Age Action that a person they know with MS is expected to use one of these!
and they break down so easily.
also to hear from another lady today that her wheelchair user auntie is struggling with the HSE to get a bed!
this woman is living in one of the poorest areas in south county dublin ireland.

You simply cannot compare like with like, say Africa or even America or South America.

we do not claim to be any of these countries and had a totally different system and way of working our democracy and it wasn't this way - or was it?
or is it going to be now that we abandon those in sheltered accommodation to dying from hypothermia, to women who live alone to not being able to get out and about, no wheelchairs suitable and no support and doing what they like to a property the person buys because its cheaper for them, but not for the person who bought the property to escape danger which the hse effectively put me in.

we are now down the tubes but to do this so ruthlessly, to cut off people on the lower end of the scale for the greater good of those on the top is barbaric and the way they are treating people like me is equal to what we abhor, statzi regimes and societies that have no ideal of the concept called democracy.
do not get me started on the role of humanity and our status of being christian  (i don't actually think i have to persuade you on this cos the church has shot itself anyway).  we were never christian so that bit of whisper is out the window.

I am mad.
No one in their right mind could stay sane with this.
we deserve to be heard, to be reasonably accommodated and to get a good service for this is the brief the health service executive are supposed to follow and so too is our minister for health, Dr. Reilly, that healthy individual who tells us that we have a high standard of care and gonna get better and better and better woa watch it ireland, yes we broke but your health will not suffer!

mine is!
very much so.

Wetroom - no taxes
Wetroom - i will be heard and i will shame them.
wetroom - i will take them to court

but most of all Blogging is the new messenger now and i say it here.
we run a cruel unchristian ship.
we have become a cold nation, a ruthless regime, a careless regime where there is no rule, no accountability and every one is a pal of everyone else, within the cliques, so if you outside that circle you 'ain't one of us mate, so don't expect us to do anything for you.'
a regime of small country with professionals who cannot be professional who will not let their side down and will shore each other up no matter if the issues are wrong to hold to and shore up.

no nurse will go against nurse.
no Occupational therapist will go against another,
and no manager will go against another.

we have a system of 'you scratch my back and i will scratch yours.'

Phones?  'what do you mean phones?'
'what are they?'
"ah sure, we haven't invented them yet!'
' we are still learning to use the ones we have.'
next we shall find that the excuses will be they are cost cutting on phone usage and i shall suggest the 'carrier pigeon' to try and run our regime of a bygone age.

Baaah i dont like this country.
i walked a tweedledum tweedledee day for sure.

On returning home with stone cold feet i discover i have no fire lighters.
my language was choice.
i had to go out in my holy shoes and get the stuff that ignites fire, as i was too tired to rub sticks.

Monday, January 14, 2013

what does being the opposite to powerful, penniless and without crediblity actually mean?

this is a serious question and i wonder does it take getting to elder years to realise that if you are NOT powerful as in being able to use power, if you are not wealthy, that is being unable to afford what you need and if you are have achieved no credibility, that is a far poorer education and being in the psychiatric system for instance then life is pretty much the worst it can be or ever be.

In the modern world, so to speak.

MODERN means to achieve power, wealth and cred, ask all the youngsters this and ask if this is so?

It is, and for a relatively modern woman, being none of these brings torturous days, every day, twenty four seven without a single let up.

Also having none of these plays havoc on relationships, for being thus means you are not spoken to, not invited to things, not considered and the only answer to a person with no cred, no money and no power ending up disabled means - go into sheltered accommodation.

So power means to me, that our HSE in its powerful status (thankfully on its way out as being seen as dangerously powerful) dictate that someone they have never met, someone who may never be the way they 'think' she will be MUST have a 'wet room' and she will, because the HSE demand it and the HSE will never meet her to discuss this issue for the Power says, you will have it, we will discuss this no further.

No discussion, no meeting, refusal to discuss a home that this woman bought with her own money and for which the Irish gov will soon ask for the first installment of the Property tax.
I ask you, when the HSE a government body reconfigures your home, is it YOUR home or is it that of the HSE? because this was done without any say in the matter by the owner.

A fact of being penniless too means you are treated with distain and contempt.

An adaptation grant to facilitiate this 'bloody' wet room has been given.
yet what has been given wouldn't secure a home for a disabled person per se given that a wheelchair will be used within the walls.

You need to pay a bit more for the upgrade but what if all the builders giving an estimation are way over what the woman can afford?

again the answers remain as being the same tactic as that of the HSE, 'I am not going to have you tell me what contractors i am using and i am not putting in expensive windows into this adaptation!'

now this is the wording from the builder to which i have asked to build for a fee, a considerable fee and a fee when the country is on its knees in economic depression and he should be grateful he has been given this project.

but he isn't going to use it to better you the poor, powerless, distainful degenerate of a single disabled woman without support!
THAT grant money is MINE ALL MINE he will be saying and she can have what shit i chose to put into her property build!

well this is how it is looking more and more.

what if this woman cannot afford a 'project manager' that is, to keep the builder within budget, using good materials and getting the job done with skill and with cred....'

the woman then finds herself in the torturous position of begging for free aid, as in the court for the criminal.

this is what i feel, this woman says.
getting shit from the hse
getting shit from the builder
and pretty much accepting shit all along and all through my life.

Lets see about Credibility - do i have any?
well, no!

why, well you are Shit see as in SHIT.
you have been in the mental health system (in ireland) and my friends the distinction is that in Ireland we locked up just about everyone in the 50's with a 'sniff' of difference and this continues in many respects.

WE, the irish have a funny disrespect for the species of human that they dont approve of, and i tick all the boxes on that one, apparently.

I am also shit because i dont  have staff, am not a director, i do not have a third level education, am not a doctor nor teacher nor nothin.'

What i am is shit.

it doesn't really matter that i also am deaf, have asperger and actually did darn well given the cards dealt with.
this is not considered in a world obsessed with Power, Wealth and CRED. (and greed).

what have i given to the world they ask, looking down their own hairy noses.

I say what i feel i have given and i hope that many will also feel the same.

Love to the least able, and the love i gave was by giving what i could.
what i could is, Time (no money involved) engagement as in communication, time (no money needed)
skills, driving the sick and least able to doctors appointments and supporting them, which is not expensive and doesn't require a great deal of third level education.  It requires Love.
what else...i engaged with some doctors for some very seriously ill people...i, being more educated then them and saner in some cases, but what i gave was a skill, not requiring power or money or cred.
I saved a life!  and i am pretty proud of this fact.
how, a paranoid schizophrenic was suicidal but who did he chose to have it in, who contained him until he was better and better enough to thank me.
so better that he isn't living on a balconied apartment that he signed without seeing (pretty much like my OT who signed without seeing), and he was grateful for he told me.
"i am on a balcony! the first time i am suicidal again, its over and out mr."
and thats what he saw and i saw.
he was then accepted into a far better environment of a nursing home and he was actually grateful for the stresses in his life to be much lifted and he being elevated to level comfort - for a change!

what can i do against power and the wealthy and the credible.
what i say to many can say that they went the mile in the moccassin of the least able.
those who pissed on your doorstep and yet you drove them to safety and returned to get their home cleaned out in order for them to come back to a better state (this did take money)!

anyone straight out of hospital who immediately goes to another sick person to help her in a difficult situation is someone who has cred.
the difficult situation was dealt with and well.

but  now being least able, penniless, considered shit i am receiving this, SHIT.

contempt, rudeness, being stomped upon despite overcoming so much and all the time trying more to overcome.
the barriers in my skills of communication that keep me isolated alone, friendless in a sea of people due to asperger syndrome.

people do terrible things to people.

Irish people, men and women do dreadful things to their fellow humans.
the HSE should be disbanded.
Grants should not be dished out without being overseen as these grants are given to vulnerable people, not all of whom have family support or partners.

Leaving situations so tangled is the art of the wealthy and powerful. (and the Irish)!
they have not a balls idea of how it works on the ground.
who suffers.
the least able.
but if they walked that friggin mile in the fecking mocassins of the flipping disabled and vulnerably insanely poor and powerless with no cred maybe we would all be able to live, with some decency and some respect.

Living is not for the faint hearted, and talking of mocassins, the arrows of darts and pain fly true to the person who can least deal with the flight of the clipped feather and poisoned tips.

who knows this after a lifetime - I do.
and no, it wasnt a contractual agreement either.

Tuesday, January 8, 2013

Does it take much to be 'corrupt?'

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 should i?
pay the property tax after what the government has done to my property - against my will.

Monday, January 7, 2013

Funny HAha Funny Peculiar!

It isn't isn't 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 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.