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