Rejection out of hand by the HSE of Ireland services to two wonderful women

it is 3.52am and i have been tossing around in my bed unable to sleep from shear anger and pain.  i am hurt to the core knowing what is happening here - for two Irish Women who never sherked their role of care, their  role of responsibility towards the least able.

let me remind all of who we are.
firstly my twin sister left these shores at a young age as most young people are doing again today.

she chose a life in social care and became one of the first women to recognise through her work that disabled people were being abused in institutions.
 disabled people were being sexually abused behind the doors of so many places where no one even entered or to people no one really cared enough about - to protect.

after becoming an internationally renown lecturer in the care and training of those who work for the disabled so that the disabled are considered part of society and are treated well and with social responsibility, she received the acclaimed Emma Humphries Memorial Prize in the UK for her contribution to caring for women,  her work in Clerical sexual abuse of women which, through  setting up of organisations where women abused could gather for mutual support she made it known that clerical sexual abuse of vulnerable adults was not to be tolerated and such women should be treated equally as that of clerical sexual abuse of minors and she also worked tirelessly to get justice for these women.

with the plastic bag and gown, she reflects on her fortune, coming away from her Phd graduaton ceremony.  Justly proud after leaving Ireland without even her Leaving cert, a primary degree or secondary degree.

margaret had good tutors at
the university, being profoundly/
severely deaf she needed them

this area of work she studied relentlessly and in her doctoral thesis she argued why the church, the state and other bodies should consider for support and care the women sexually abused by the clerics of the day, in their role as care givers and state bodies who had a political and ethical role to do just that - care.

it was also one of my happiest days, 2008, i rose out of my wheelchair to stand close the
person i adored and admired all the work
she had done over the years.
(doctoral thesis on clerical abuse of adult women)

Mary Raftery admonished the Irish for not recognising the work of this wonderful person  here, no one knew that she had won the Emma Humphries Memorial Prize and no one acknowledged that such an Irish woman of such stature existed even.

None the less the HSE 'bought' her in, to train up those who care for intellectually disabled in the west of Ireland and elsewhere, with the brothers of charity and other state funded bodies.

she was known as a whistleblower who couldnt keep her lips sealed when she heard of the mismanagement and abuse of intellectually disabled here in Ireland and she had been bought in to address these issues through training Irish HSE personal to do the exact opposite, care.
she immediately lost her job and another organisation did not retain her excellence in the field and told her she was not needed further.

RTE made a documentary of my twin sister, during a series called  'the spirit moves'  and called it "the Letter and the Law."  it is still on an RTE podcast and can still be viewed online.

given the work my twin sister chose to do, on her return to Ireland as a sick and disabled woman with the shoe on the other foot we see again what has happened to her - abject neglect by her own country and its official carers, the state body, the HSE.
Neglect.  Let it be known that the state, the HSE has turned its back on one of its most famous women who did more good for others than they themselves could find to acknowledge firstly after her awards in the UK and secondly as a disabled woman here, living out her days where she was born as a citizen of this 'glorious' state.

Margaret began her work in the UK comparatively late in life, her career therefore was short but good and productive as i have stated above.
she was not so careful with her finance, simply because she gave most of it away in her work with the women she wanted to protect and help.
so she returned not remembering in her working productive days that money may be important to herself if anything should happen her.
this is her one big failing,  her lack of understanding of her own self care.

but then NOW, she is sick with a rare neurodegenerative disorder, back in Ireland.

why is it then that the Irish cannot protect her and give her that care she extended to the Irish when she could do so herself?  A lifetime of care for the least able, she is now just that, an elder who has succumbed to a rare condition of muscle wasting, parkinsons disease and far more.

she came home to neglect.
she receives no physiotherapy for her body structure and muscle wasting.
she receives no specialised shoes for a severely inverted dystonic foot, fixed as turning inwards making her have to walk on the very edge and not on the flat of her foot on legs already weakened through myopathy muscle wasting,  giving her excruciating pain, and has done for YEARS, again neglected by lack of provision of suitable foot wear, by the state health care providers, the HSE.

she receives no support whatsoever from either a social worker or from a psychological supporter which may help her in her need when she is now declining through very severe degeneration, she is left, neglected by the Irish.

she came home because she loved Ireland.
she came home to be amongst her own and amongst her family.
she had left  these shores at seventeen.
what a shame and what a disappointment and how she regrets her move.
she is shocked, that no one seems to care for her at all, neither her own family nor the HSE who has actually a caring role to play and are being in her professional eyes, neglectful of that role, which she would have told them in her training days when she was bought in to train them up in how to do things well when dealing with disabled people.  Irony personified.

as we see she and i have together been fighting for appropiate wheelchairs for our end of life quality of life.
three and a half years later we still remain in dangerous appliances for very sick people.

Myself, i believe too i am owed care from the STATE.
unlike my twin i was only a small player in a caring capacity and life.
unable to work most of my life i was drawn quickly into the psychiatric system because i had been abused by a cleric and there was no other system then in the 70's but when i did get out, i never looked back.

i too trained up to bring best practise to another group of people, the elderly.
i did a post graduate diploma in Arts & Empowerment so that i could bring some skills to the nursing homes i was visiting weekly and help them there to feel empowered and less depressed, something hard to do when they knew one thing only - they had been left to rot and to die, forgotten elderly of the Irish people.

I too receive nothing for my days of volunteering care, volunteering  tocreate a safe environment for the elderly to speak and to paint and to create for themselves a small piece of joy in an otherwise dreary and useless life or so they had felt anyway.

I too receive nothing and we fight too hard for a basic standard of care as laid down under the charter of care, the disability act and the rights of the disabled laid down by the UNited nations and the World Health Organisations

we are being neglected in our country of Ireland, against all best practise as laid down by the above organisations.

the two of us in 2012
a time for reflecting by a lack
i make a composite image
for my neice abroad

we are examples of how the state treat the disabled of ireland - they don't.
they do not care and they do not provide.
we are the 'useless eaters' as Hitler referred to his disabled, and burned down in the gas holes of the gas chambers for which we all now show a rightful outpouring of shock and horror decades later.

exhaused after being shot at in a social
housing unit, i take a break away and
bring my 'Irish Therapy Dog'
as you can see, my pet is doing her job on
me!

no shock and horror at the way the Irish state treat its own disabled.
can you by making it known to the Irish Health Service Executive and Dail Eireann that the Kennedy twins deserve far better then they are receiving now after their lives of service to the least able in society?

lying in a cot, my coat and gloves on
the glare of light hurts.
i am recovering after having all my front
teeth extracted after disease, undetected
in Ireland, but recognised in UK.
(primary sjogrens syndrome)

can you effect change for at least us, and show that you will not accept neglect of the sick and disabled.

i enjoyed bringing my chihuahua to
nursing homes to cheer the ladies
here she is in a mobility scooter i used
it was taken from me by the HSE and
they then gave me an 11yr old
banger which lost a wheel and i went into a wall
on my way to the neurologist.  Shame on
the HSE

a lady who is nearly
blind, gets comfort
from maggie
this was the first
smile i had seen
from her

can you do this as your token of outpouring of anger for what Ireland is doing to its own all across the land.

can you do this so that we, as elders now can live a less painful existence in our own country with a potentially life shortening disorder which is so rare there isn't







 even one consultant in ireland for this condition and there is no cure and no treatment.
all the more reason to give us the services of wheelchairs, special shoes, for both of us with our deformed feet, appliances such as suitable beds, and give us services such as ongoing physiotherapy and an input of psychology so that we can cope without the support of others that most do have, their family.

we are alone in all of this.
but you are there and can show you care, please do.
sorry this is so long and waffly.  i am angry and its early morning so not the best in editing terms.
I hope your night was a better one than mine has been

runaway wheelchair experience 8th November 2014 - HSE- DANGEROUS!

you really couldn't make this up if you tried!

the debacle of the powered wheelchair provision is ongoing.

when the 11yr old powered chair finally sat down and died, that's the one that went into a wall when it lost its wheel i had to request a new one from the HSe.
but i requested actually a 'temporary wheelchair' so that i could be properly assessed and finally get a proper wheelchair.

i was refused a proper wheelchair assessment by the hse but this thing came - the one mentioned above as the 'runaway wheelchair,'  it didn't come all at once, it came twice.

the first time all smiles was the local area OT and the man in the van (company provider) came and announced 'here is your new wheelchair.'
well, yes it looked new and no it wasn't to be my new wheelchair, it was to be my 'temporary wheelchair, as agreed between HSE and An Taoiseach's office.

i asked, 'er, new?  you mean 'temporary?'
"no this is the final real one decided for you."
All smiles.
"No,"  I said "WE decided on a temporary one, between the HSE and An Taoiseach's office."
"oh, i know nothing about that."
"hang on and i will show you on the laptop i have it confirmed there."
"no, (a lot of No's come from the HSE), we shall have to go and get confirmation of this.

the summer is short and they went, wheelchair, van, man and OT, and her car.
all went.

finally they got that confirmation as i had on the computer, but they never believe the client, ever!

this temporary, new wheelchair behaved badly today.
it was behaving strange anyway around the back left wheel.
(i am having awful trouble with back left wheels on wheelchair, ditto the back left wheel of the last, which flew and rolled half way to Dublin and i went into a wall).
Does it have anything to do with being a left handed do you think?
anyway, where was i?
the temporary behaving badly.

poor twin was poorly today and i decided on a trip.
autumnal weather, changing colours of beautiful trees as leaves fade and fall.
i rang up Powerscourt Estate and got permission to travel by wheelchairs, down onto their walks in the estate itself, this is a beautiful place with a flowing river on one side and green fields and woodland, with a 'smooth as baby's bottom' pathway.
we even got the code to the electric gates so off we went, we had picked up a lunch at Enniskerry, sambos and we were to eat them at the Estate.
we got through the gates well but fumbled getting the dynamic smooth of disembarking one barking dog and two anxious chihuahuas.
it was raining so coats, hats and gloves on the ready and mags helped me with leggings over my trousers.
two cars stopped to ask if we needed help
it was messy alright with so much to consider there.
well finally we were sitting, a good place to be actually after all THAT!
mags moved off with Saffi and i was fumbling.
but i am slower anyway always.

margaret heads away with
her beloved Saffi, soon after i go but soon the
powered chair decided not to stop!

i got camera out and took twins back as she steamed on.
then i followed.  i thought something was caught at the back wheel and i kept looking.
funnily just as i came to twin on the downward slope which the wheelchair should have been able for, it didn't stop when i took my fingers away from the guide joystick, it took off.
'ah, oh' i whimpered.
mags was not far from me, "hey mags look, its not stopping"
she saw me then fishtail to the side of the path and into the orange leaves falling and fallen.
that's not where i should have been!
mags came back and pulled me out as i tried to use wheelchair power so as not to strain on her.

that was OK and down.
then i tried to go off again but it was too dangerous.
the back wheel wasn't moving but sliding and twin said the front tyres looked bald and also she said they seemed a few centimetres from the surface of the ground.
not good.
we were fumbling again when two lady walkers approached with a fabulous golden retriever.

i asked for help back to the van.
the younger lady of the two pushed me from the back and i used the wheelchairs own power to get me up the hill.
she said it was OK and she wasn't pushing at all but more steering, she felt the machine trying always to go over to the left - that's called 'fishtailing'
so fishtailing, restraining and power plus we got back to van.
the poor old retriever saw the high gates and thought his wet romp was over and sat there waiting.
no, this way, c'mon this way said the lovely woman.
off they went back down from whence they came and off to the horizon of beauty.

i got my gear into the van, that is the wayward wheelchair the one that wanted to get away from it all and push me again toward a vertical hard surface, this time maybe try the tree in the leaves.
i went to meet twin and she decided that's it, we best get both the darn chairs into the van.
besides, her motors are leaking and one is not going well and she was never confident it would ever get back to van in the first place.
both in van we crawled and i snapped the beauty, one of the reasons we came.
finally we stopped at a clearing, the sun began to shine beautifully through the leaves.
what happens, tell me again what happens?
the battery of the camera died. and i couldn't find the spare.
god spare me disadvantage i ask.
the wheelchair fishtailing had me blasting a certain organisation.

you know that actually it is my right to find enjoyment in life, its short enough.
now all summer i was more or less penned in without a powered chair as the hse argued about this and that.
now when i get one its seemingly faulty and the hse has cursed me with it, and bloody seems hell bent on doing me in, vis a vis a defective wheelchair.
i could have been pitched forward and out.
pitched left and wet and slap into the rugged trees.
i could have been seriously injured.

the point where no more
images can be taken.  the very spot
where the camera batteries died.

this actually is an indoor powered wheelchair.
the HSE had KNOWN all along what the two women from Wicklow had KNOWN was their priority 'to mobilize outdoors' independently as is our right under the UN charter and the disability act 2005 and the World Health Organisation.
you wouldn't kind of think that the HSE wondrously believes they comply with human rights legislation.  they do.  they would object fiercely if anyone decided to tell them they actually were violating peoples' human rights.

but this wheelchair story and its ongoing dramatics, IS a human rights issue.
and a human rights violation.
its a violation of health and safety too.

so i wonder, when oh when will the HSE ever give me a decent wheelchair.
I am not impressed, so i am not!

this is by way of correction of the last post up my friends.
The petition is really important and we could use your help. Click here to find out more and sign:
http://www.avaaz.org/en/petition/County_Wicklow_HSE_Provide_appropriate_powered_wheelchairs_for_Kennedy_twins_Greystones/?mFFiTcb
i hope now you can get into this link, but of course i will try and make sure you do!

Tanja was provided with her great wheelchair from her country Finland, she too has mitochondrial disease like us twins

you can if all else fails by 'selecting' the URL and copy and paste to your drive and then click, then you are IN, for us to WIN!
ah, so to speak.
We have a rare neuro-degenerative muscle wasting condition known as Mitochondrial disease, we are older too so experiencing the age related conditions as well.

will i remind you all what this is about?
well, we have been given dreadful wheelchairs yes, they are powered chairs.
mine is new but basic, with no suspension whatsoever, no back support, no side support, no leg support meaning i cannot tilt the leg rests which i always had to do for one leg when using the manual.
there is  no head rest when jaded and you cannot sit at the 45 degree angle any longer and no tilt facility when your body begins to slump and bend forward which happens rapidly when sitting down.  remember our disease is primarily an energy disease and so when our cells start to fail so too does the capacity to use our bodies normally, eg failing to hold itself up when tired and weak by muscle weakness.
i cannot sustain this position for very long.
my chair is too small and my leg rests have been brought up as if i had shorter legs, so as to make sure i don't slip off the chair altogether.
it has a rock hard cushion and i have a damaged left hip.
all in all a brutal ride and a brutal thing.  i have a weaker left side so i slump over always to the left with no support down that side whatsoever
not to mention that it is an indoor chair only meant for very smooth surfaces but i use it mostly for outdoors and that's the main real problem, it was never designed to be used on our paths and roads in a small village!

my twins is still a second hand, her batteries are down and oil is leaking, in the meantime she has been told not to go up any hills!  because one battery is weaker than the other, the whole chair 'fishtails' this means that going down a small incline or even straight along it can veer to one side alarmingly and once  when my last one broke down i borrowed it and went to the nearest town.
on my return i told my twin it was lethal and there was going to be an accident in it as sure as my name was 'screaming Ann!'
it just couldn't be well controlled to drive in a straight line at all.
but apart from that, the twin has a very bad active arthritic back where she has crumbling discs at the base of her spine,
i have these crumbling discs at my neck.

you bounce alarmingly along in these 'gadgets' from hell.
your head shakes and i have menieres disease so bells ring after a trip out, my head hears music and bubblings and i am dizzy and in pain, its wojus absolutely dreadful.

my twin too has landed in hospital on gas because she was in so much pain after a trip out her back seized up, she was put on morphine by injection and now both of us are on morphine patches for pain relief, and i am on another pain med three times a day.

if anyone thinks that this equates to giving a health service par excellence then i do not.
we have all these reports on making the service better and being patient centred and listening and caring and 'oh we are just so so wonderful to our poor sick.'
the bottom line being, they don't really care that much at all.

the kitty is not that large and we all know that everyone is struggling to a huge degree here in Ireland.
signs of the times being we are in a rage right now for it cannot be sustained that poverty levels rise and all our young are leaving and there are so many old people who again no one seems to have much time for.

something has to be done in our little country, but personally i can only speak for two here, the effects on us, as we prepare to meet our end.

why are we in these wheelchairs in the first place.

margaret is discussing with
tanja her
great powered chair and the
reasons why she has it..
exactly the same as OUR
reason!

well because we have a neurodegenerative disorder, its progressive and there is no cure and no treatment, therefore providing palliative care for us means lessen the pain and give us a good quality of life as we degenerate, i would not consider that asking for much.
we as twins are not high fliers, excuse the pun, we have a low key life and yet we want to do certain things, a concert maybe or the local wee theatre, but all we do is have this battle for mobility.
let me remind my readers that due to my last wheelchair dying at the beginning of the summer i did not get out for summer events, i couldn't.

effectively it is against the WHO guidelines i was entrapped in my own home, unable to move.

it isn't legal.

(in the image above my twin is standing, yes she can and so can Tanja, but we have to conserve ENERGY and mostly when out we negotiate our way round using the powered chairs.  All medical consultants say to mito patients you must keep active and walk to build up the body and keep it going, so mito patients do walk, in the main they walk but need these chairs so badly due to disease in our batteries, these chairs act in reserve of a flat!)

all have a right to mobilize in the community and use the community well.
so while others took the opportunity to enjoy the fine weather, many times my twin and i couldn't move far away from base at all.
anyway no more drivel now, lets show you some images of a proper wheelchair for our condition, the condition being mitochondrial disease.
and lets put up the URL again and see if this time you can click and then sign and most importantly, SHARE on to all you know.

Tanja has bent forward a bit, to demonstrate the
type of back rest and moulding
on her powered chair which gives her that
comfort she needs because of her condition -
mitochondrial disease - the same as us twins!

 we celebrate hitting our 62nd birthday on the 25th of this month, November, i want as my birthday present a decent wheelchair from the HSE that is the Health service executive.
it would be the best ever birthday present.The petition is really important and we could use your help. Click here to find out more and sign: 
http://www.avaaz.org/en/petition/County_Wicklow_HSE_Provide_appropriate_powered_wheelchairs_for_Kennedy_twins_Greystones/?mFFiTcb

The petition is really important and could use our help. Click here to find out more and sign: 
http://www.avaaz.org/en/petition/County_Wicklow_HSE_Provide_appropriate_powered_wheelchairs_for_Kennedy_twins_Greystones/?mFFiTcb

the kennedy twins petition for far better wheelchairs!

my twin sister created this petition page, i am all for it, indeed we have had a dreadful struggle and we are coming to the end of our rope really.
https://secure.avaaz.org/en/petition/County_Wicklow_HSE_Provide_appropriate_powered_wheelchairs_for_Kennedy_twins_Greystones/?lFFiTcb&pv=0

at Dail Eireann yesterday

twin guest speaker of Dr. Rosie Gowran presenting a talk to some TD's in government buildings on the provision of powered wheelchairs in ireland and the effect the poorly provided one does to a body of a person.  Margaret, here pictured left, spoke for the older person, as younger people spoke too of how many times they had to return to the HSE with the poorly considered wheelchair given to them. 

we have a crisis situation.

pain is the main factor in all of this, pain.
we are elders, 62 on the 25th november and although many in our health system consider the powered chair we are requesting as a sort of 'high end chair' well it is in many respects but we have a multi-systemic disease.
its a muscle wasting neurodegenerative disease, coupled with some usual aging processes and arthritis along with a weak back structure and muscles to hold our bodies up plus of course, pain pain and more pain

its not ideal to be in a chair for a day and be doubled up at night in agony, this isn't what a chair should do to you but this can happen.
i was recently in it for half a day and it had the same effect.
also mito disease is basically an energy disease so when the body fails to convert food and liquid to energy we are exhausted all the time, like trying to run a car when the batteries are flat, well our body batteries are dying.
its hell too at times to sit in this 45 degree angle because the muscles tire too fast and so if you want to sustain in a chair say on a train or concert or at coffee with a friend what we need to help us stay upright is a tilt facility which enables the chair to tilt back thus making our body rest back abit and release the strain on the muscles down our spine which is finding it difficult to hold us up!
ditto our head too becomes heavy when very tired, asking for a head rest facility is not a fashion item, the head is the heaviest part of the human body, what do you do with it, when the neck and spinal muscles are in agony from the strain of over work?

i cannot endure more of the same day in day out, nor can the sister.

why would someone even do a campaign such of this if it wasn't for one reason only - we are at the end of our rope.

consider this 'high end' powered wheelchair bit, there is no such thing!
powered chairs are purpose built to suit an individual and are used now for many many conditions, not only spinal injuries or MS or other.
considering again we have a neuromuscular degenerative disorder where there is no treatment and no cure, surely to deny us a proper wheelchair which will bring some comfort and release from added pain is what health care is about?
this type of chair is used by mitochondrial disease patients worldwide, from USA and finland to UK.
the problem being the cost in Ireland is higher due to our limited population and usage base but the same chair in china is a fraction of the cost, the same chair in the USA is also far less than here and also the UK is less but Ireland, no, very high because of importation costs and also low usage base and population of the disabled groups.

effectively we seem to be in the wrong country, at the wrong time and in the wrong time of our history.
so we petition because we believe its not impossible nor an obsurdity, its actually cost effective, from a health care point of view, its cost effective.
also its recognised by the WHO that wheelchairs are part of who a disabled person is, its an extension to provide us with the equality that others have due to full power and so we use the invention of power from another source, rather than failing bodies, we as scientific technicians didn't invent the wheelchair for nothing and didn't decide on making it a luxury item, but a proper adequate and functional item for each individual need.

we are not 'off the peg' people we come in all shapes and sizes with all manner of disability and diseases
i humbly ask all who are in favour put up your hand and place that finger on the 'sign here' note, and after that share our petition...please!
...

https://secure.avaaz.org/en/petition/County_Wicklow_HSE_Provide_appropriate_powered_wheelchairs_for_Kennedy_twins_Greystones/?lFFiTcb&pv=0

please sign....because we are effectively - at the end of our rope.....

https://secure.avaaz.org/en/petition/County_Wicklow_HSE_Provide_appropriate_powered_wheelchairs_for_Kennedy_twins_Greystones/?lFFiTcb&pv=0

a good health system means we have a modern society

i really do feel that the ONLY way we can judge a society is by how we treat people who are ill, marginalised and elderly.

this means in effect, making sure they are healthy, cared for and equal.

Ireland....
i cannot even begin to describe the lack of care, the lack of professionalism and the lack of management in order to begin, i mean BEGIN the journey of being called a modern society.

Enda, our Enda says we are a modern society and because we are a modern society he isn't putting up with anymore nonsense such as clerical sexual abuse, yes, he announced this in the Dail.  Is it easy to forget?

but what he fails to recognise is a vast minority of his people, the Irish people are suffering severe abuse of a different kind.
FAR more are actually suffering... disadvantage, ill health, lack of care, lack of equality and a rather butchered, unequal approach to health.

a vast swathe of people do not get a health care package at all.
i mean nothing, bar the statutory, obligatory bits of caring which are so minimal it cannot sustain a healthy body, cannot sustain a healthy mindset, lifestyle and therefore leaves a person unequal, dis-empowered and out of the bracket of employment which seems to be the lynch pin to 'a modern society.'

if you have no health, you have no wealth.
the saying says so.

Ireland is brilliant at doing 'health forecast to achieve best practise.
we are brilliant on doing investigations, also brilliant in offering its people a vehicle to complain, especially about the services they receive.
we are very good at writing reports, reviews and criteria.

lets see where this all gets us.

the forecast for best practise for mental health for instance was drafted and drawn up well over a decade now yet its always has had the lowest budget.  alarm bells ringing after a year which saw this lowly budget absorbed into the general pot and left mental health again further diminished as a concept.
we had the result of a large proportion of the population needing mental health care like never before and a growing suicide rate, numbers being  unrepresentative of the real figures.
we have many more seriously ill people thrown out of institutions to fend for themselves in the community when the best practise was announced that this was the way to go.  NOT when you throw them out with no support it isn't and that never was the goal of 'Vision for Change.'
it stated that people should be in community, not in institutions, it didn't say 'throw them out and throw away the key' and have security men barring entry to the hospitals and care facilities, which is what has happened.  the most worrying effect of this document was that when the people were in the community there was no backup whatsoever if they got into trouble. people DIED because of this lack of foresight.

when things go wrong, we investigate.
how many investigations are ongoing at present, and at what cost?
why not disallow things to go wrong in the first place, which is achievable in many instances yet still the investigations do not bring change for the better nor bring a clarity of knowledge and foresight, vowing never to make the same mistakes again.
we are just good at it, the investigation bits.

we have a few vehicles which allow everyone the right to complain of poor services, no services and down right wicked practises and procedures.
where does that get us?
we know that more people are making complaints.
where do the stats go for these, they are not in the public domain.
nor are the results of the complaints, many go un-investigated and those who investigate are sometimes the boss of the department to which the worker belongs!
in once case i know of a HSE official investigated a complaint about a practise which she herself put in place so effectively she was investigating herself and the result of this investigation found the practise should not have happened which is incredibly bizarre by any one's standards, only in Ireland can we see this happen.

we see this happen because of enmeshment between departments, lack of transparency and a small country which doesn't seem to understand - you do not investigate yourself!

when Irish professionals write reports and do investigations the one thing that is on their mind is wait for it - repercussion - for themselves, as an organisation and i am specifically saying here Health for this is what i know about, but its probably the same for Dail Eireann and also any state or semi-state body (Irish water)s.

management -
we are out on our own in this department.
we wouldn't even know what that means if it was near  to and equated to a wet fish slapped across our laughing faces.

little things tell you we do not understand this, again in health for this is my experience

....an official travels 40miles to sort the issue of a cushion for a wheelchair.
....the cushion is duly  delivered after a few visits, (only dealing with a cushion).
....phone call...what type of cushion did i give you.
answer:  it was standard.
response:  oh was it.

....the official drives 40miles to check.
response:  oh, yes, standard, you are right.

....sorting a bath chair for a disabled person.

...an official drives 40miles to measure the bath.
...the official rings.
....i need to make a visit again to look at the bath.
...response:  oh, did you not look at the bath the last time?
...answer:  yes, but i forgot my measuring tape!

she had driven 40miles
she was to drive 40 miles back to her catchment area.
she then was to drive another 80 miles just to carry a measuring tape on her person and measure a bath.
result:  we can't sort that problem now.
meaning after the measuring!

...an official arrives with a company supplier of a wheelchair.
...two vehicles, one containing the wheelchair.
...big smiles
...here is your wheelchair
response:  is this temporary, i was told i was getting a temporary one.
answer:  oh, were you, we don't know anything about that.
man with the wheelchair, starts to bring wheelchair back to van carrier.
i get my laptop where it clearly says in an email from the Taoiseach's office, 'yes they say they will supply a temporary wheelchair.'
this didn't seem to ease their mind,
the wheelchair was taken away until the official could check on this.
...where is the (expensive) phone ffs.
exit man, official and my temporary chair.

its checked as correct, its to be temporary.
all come back.
next i have to sign for it.
question:  'will you be stating this is a temporary chair on this form.
answer:  'oh i cannot touch forms.'
answer from me:  (written)  Ann K accepts the temporary wheelchair handed to her today, signed.

its mind boggling crazy way to run a system.
that man in that van would have charged over 50e each way for the call out visit alone.

how many times was the old banger of a wheelchair repaired and how many times did a technician come to fix an 11yr old wheelchair.
well alot and i have just discovered his call out charge to the state is in fact 50e plus vat, and lunch!

when we then have an austerity problem, an over spending problem within the HSE and the community, the hospitals and far more besides, its the minutiae of absurdity that causes pain, distress to patients, that is the citizens who are sick, disabled, vulnerable, elderly and need care.

if we do not do this well, i contend we are an ignorant bunch who crass all over the land making nothing useful of professionalism we do not seem to have acquired in any school, university or philosophy of thought.

we just bang through walls of bureaucracy and crap efficiency.
its then becomes a cesspit, a hell hole of despair for everyone.
efficiency breeds contentment from all angles, not least for the professionals, if they were that.
all need to understand where they stand in order to be at ease and less chaotic.

when will we even begin to understand this concept.
no bull yowling at the Dail chambers that we are 'a modern society' will convince me of this fact.
i am living through ignorance my leader, utter ignorance.

Asperger syndrome, lonlieness and understanding

I was speaking to someone today about difference and perception of people and how people behave.

We have the ‘norms v. the ‘not-so-norms.’

This is an interesting concept,  ‘Difference’.

The word ‘neurotypicals’ is a word I also dislike intensely.

What is ‘A typical person?

I, personally,  am not typical we do know this.

I also knew this as a young child.

I was reminded every day, words screamed at me - ‘stop shouting’ ‘stop running’ ‘stop talking so much.’  ‘WOULD YOU BE QUIET’  ‘WOULD YOU BE STILL.’

 I could not and I still cannot and yes, I do know why, NOW!

Decades I have spent trying to be what others considered ‘normal’ and join the conformed world of ‘neurotypicals.’

Difference made me very depressed and trying to be something I could never be also made me very depressed and very anxious indeed.

I tried.

I failed.

I lived a life of misery – decades of it, because of the effort and the abandonment of my effort as well, the more I failed the more I withdrew.

My difference wasn’t the difference others thought it to be.

I was not a mental head case, which has stuck and there isn’t much I can do about this, although I wish I could try  but that is way beyond my powers.  I doubt I would succeed because it does suit people to believe this.

I have asperger syndrome.

It is interesting to note that this syndrome has now been merged back in with the term Autism, when once it was separate and that according to the mental health experts in the USA.

I believe this is so to make it possible to drug people if they are not conforming and so the weightier label of Autism is a one-stop shop for the ‘stop that’ pill.

So in all the years I tried hard to be like everyone else, I failed.

In all the years I was something defined by medicine, I was defined by many others as something entirely different and I doubt I will make any headway in redefining it back to either a norm or indeed to what it should be as is now known, Asperger Syndrome.

By someone else I have been redefined as Autistic and there is nothing I can do, even though there is a vast swathe of people stating that psychiatrist re-definition is the wrong one, as Asperger syndrome is not actually Autism.

Its Asperger syndrome.

Lets look again at how hard I tried to belong and join a world I didn’t understand due to Asperger syndrome.

Let us look at how people who are termed ‘neurotypical’ are trying to help autistic children, mainly and asperger symdrome children to join the world and integrate and be  part of the world.

They, the neurotypicals, have started ‘Assistance dogs for Autism’, in this country that costs 47k a year to train a dog up for one person alone.

They also have associations and groups and parenting groups and problem solving groups and facebook pages and all for the aim of improving the lives of those with autism etc.

Their main way of doing this is through teaching children how to behave, in effect the ‘normal’ way.  How to relate, the normal way.  A simple way of saying this is the ‘dummies guide’ to The 100 best tips to be ‘normal.’

 This is all done ‘at’ the child, ‘to’ the child and ‘for’ the child.

What is Asperger Syndrome?

It is in a nutshell a difference in ways of communication that are different to the vast majority of the population, and the vast majority have decided that we, are actually defective because we do not relate, er ‘normally.’

The ‘normals’ are attempting to bend, teach, train and bend again the ways, which are normal for the minority to the ways that are considered normal for the majority and foist these ways on the minority.

Communication my friend is between one group of people and another group of people and its called communicating.  It’s a process and is also pro-active and shared, its not active for one and passive for another.

Asperger Syndrome people tend to be a lonely bunch simply because they are in effect, different and communicate differently.

What normal people (they consider themselves normal) do not realize that whilst they spend most of their energies working hard and hell bent to bend, asperger people to be what they cannot be, ‘normal,’ they spend little or no time at all learning or bending themselves, to related as in relate with knowledge and in an active way to the other.

 The aspie is working hard to be ‘normal,’ as from the age now of about three it will be noted that they are not normal so the mind bending begins early so too does the notion within that child of ‘difference.’  The child cannot help but understand this concept, for they now have a dog beside them with a coat on emblazed with an emblem for the condition of Autism and also  Assistive Dog for the person who is hanging on to it!

Can it not be a two way process, all this hard work for the asperger person, all this learning, bending and learning again?

Why can the ‘normals’ or ‘neurotypicals’ not join the minority groups?

Can they not meet in the middle and attempt that social dialogue with a large degree of acceptance of difference rather than changing everything there is about a lonely asperger child or adult.

Can they actually attempt ‘friendship’ with an asperger child or adult and attempt to understand the difference rather than changing it outright and from conception to ‘forever amen?’

Why not?

No one said that asperger people are not as interesting, if not in many ways more interesting!

No one said that asperger people do not want friendships, they very much do

No one actually said they cannot be a good friend, cannot relate because they can and do, but they do it differently.

Why do the neurotypicals not try to retrain themselves to be less majority and more minority, in thinking?  The two can meet somewhere in the middle and less of Difference is noted.

Aspies like normals, do like to withdraw into their own quietness and peacefulness.

No one is denying that for the neurotypicals, like most humans we all need to know when to release another to their own space and peace.

But I see all this enlightenment to ‘change’ and in understanding, very much one sided.

Like everything that is health or personality related, we see now a pathologizing of ‘difference’ even by splitting the definitions that high functioning asperger people are in fact now high functioning autistic people, this isn’t quite exact but only surmising and in doing so draws more into the net of psychopathology.

 Definitions of norm are ever decreasing and I see a day the majority of people now normal will be the minority of to day, defective.

Imagine this, weeping at a funeral now is to be given a medical term and it is being considered to consider it a pathological manifestation!

about having a chronic illness

oh Ann! you look really well...I am very sick.
oh Ann! You are walking........ I am still very ill.
Oh Ann!  why can't you? ........I am too sick.
Oh Ann!, Oh Ann!...................  you were ok yesterday.

the trouble with being so ill, its not visible.
I do not exactly wear it on my face, in my dress, or actually on any part of my body.

You will see me looking as people call 'normal.'
You may see me in a wheelchair, you may see me then stand up, or walk, and say...she walks!

You may also see her lying sick as a parrot for hours on her swingseat in the garden.

what you do not see is Ann weeping with depression because she feels so awful.
you will not see her go to bed, fearing the fact she cannot breath properly.
you will not see her waking, her gasping as her head spins badly and needs to get up for food and liquid because her disease demands she has these and all she can feel is her head screaming and her head spinning so she must rise and drink plenty, she cannot rest on.
you will not see her as she tries to physically get out of bed and scream with pain, in her joints, in her feet.
you will not see her as she steadies to stand, being fixed to a spot in agony before she takes that first step forward, stiff as a board, in pain.
you will not see those eyes, dry as a crisp leaf in autumn and sticky tacky with not enough moisture.
you will never see her feel so shattered even after a nights sleep so so tired all the time.
the feet buzzing in pain, or tingling or numb or burning or on fire.
you wont feel or see the skin creeping as even finger touches finger sometimes causes far too much pain.
how she doesnt sleep with jammies anymore.
how sometimes she needs a bed cradle to prevent the clothes touching her.

these are all the signs of a woman with a neurodegenerative disorder.
her muscles are wasting and dying.
her immune system doesnt function so all that is going too.
her brain functioning is going down.
she is living in constant chronic pain, no matter what medication she takes.
she spins from exhaustion if she has done too much talking or even sitting and typing.
she lives like a zombie with not a lot of support.

she is treated as if she was 'normal' as if nothing was wrong and almost as if she is faking it.

she also has asperger syndrome, which she herself is very aware of and yet so late in life has never really learnt that many skills to deal with this.
she also knows that maybe only maybe if seen sooner there would or could have been a way out and over her chronic inability to be part of a functioning world, she sees and experiences but cannot touch.

remember when you next see me and say 'Oh Ann, you look so well.'
Look with your imagination to the call of morning, waking, trying to get out of bed, standing, screaming, moving, and attempting to embrace another day, with profound exhaustion.

no cure and no treatment for Mitochondrial disease.
just looking normal is what you will see, feeling ghastly is how i feel.