Nothing replaces humanity

It's hard to know how 2015 will be any different to 2014. 'Austerity' in Ireland (republic) and the UK continues to batter the most vulnerable. Right wing governments who feel the only course is to cut, cut, cut....not from the rich or themselves...but the poor and defenceless, wreak havoc.  This depresses me. Admissions to psychiatric care has risen exponentially like never before...where many will get the label 'mentally ill' (not socially oppressed) and may never find a job again! stigma sticks even in this alleged enlightened age. Malnutrition has returned in the child and elderly population not seen since the second world war, food bank's risen by300%...and no end of the road in sight. Suicide of sick and disabled people increases as the UK 'sanction's' those with difficulties and cuts welfare. The never ending stream of 'unfairness' eats my soul alive. I feel powerless to change it.

My own disability fight continues. a fight to get a clear diagnosis  No-one realises the stress of 'not knowing' WHY my body fails. People tell me it's not 'important' to have the diagnosis...but it is. It Is. myself and twin are now deemed to have a very rare genetic disorder. very rare...RARE. huh? is this helpful. no .  dealing with a rare disorder not even written about, known about, seen before, might seem scientifically exciting. to us twins it's a nightmare. Why , because Irish health services are not that sophisticated...they just don't understand. they operate on a diagnosis they know, not RARE!  RARE, for THEM, means 'made up by the client' and they treat you that way. it's hell.
Me in Queens Sq, London, UK February 2014 having tests.

Ann, my twin, being tested in Newcastle Royal Infirmary Dec 2014 UK.

 

We struggle still, to get basic services and a decent powered wheelchair. and next my twin's van, which transports us is 'dying' and we just DON'T have 30,000k to buy a new one. What will we do...don't know!

So folk between the uncertain world of 'Austerity' and our own uncertain health...what can 2015 realistically bring? We now in hopeful vein DO have a small campaigning team here in Greystones willing to raise funds for our wheelchairs...the van? ...that's another story...The people of Greystones rallied and this is truly fantastic.

I have ideas to make changes. but the last few years have laid me very low. I miss my friends in the UK. I miss Hackney. I miss my work. The sunrises, birds, sea are all glorious...but NOTHING replaces humanity. PEOPLE are the true soul foods. I need more ...

What do you want? well it's complex!

Christmas is upon us and children are being asked; "what do you want for Christmas?"  ah it's a great question until the answer proves that's going to be difficult or impossible and the wailing and weeping can be heard from here to the North Pole. These human elfs can be surely marvellous little things but ...well life throws barriers in the unexpected places!  not well understood by elves of the human kind.

I'm not an elf, but I WAS asked by a cousin who reads my facebook page "what do you want?" this apropos the HSE services. for her, never been of need of HSE services, the mystery is why, if we've got new orthopaedic shoes, other services, what MORE do we want. My simple answer was a 'decent wheelchair'. Ann and I looked at each other and laughed as it was the first thing out of our mouth. A 'Powered Wheelchair'. but not just any old bucket.

But you see people don't really understand why we need a powered wheelchair when we walk. Seeking a judge for our DAG;T Christmas Cake competition my PA (personal assistant) left me outside a café and I went in to ask the woman would she be judge - yes. success. then she arrived at competition, I was in wheelchair and she declared she didn't recognise me as I was ....er....I helped her out "walking" . "yes", said rather embarrassingly.

This happened again as a woman arrived carrying a raffle prize to my door and I in good cheer, walked and opened door. She looked at me as if I'd just had a miracle cure...but I saw you...."yes", I rescued her, "well, it all depends on the day". 

so "what do you want?" is difficult for many to understand...why does someone who WALKS need a Powered wheelchair? and furthermore, having a home help and a PA is seen as luxury by all non-disabled people. Total generosity by the HSE so why ask for MORE.  Are you not being too 'greedy'. The sub-text is that I should be grateful. grateful for the demeaning, humiliating process that is 'care' from the HSE. Why should I be 'Grateful'?

These are people who simply cannot 'get it' about illness and disability. when you look apparently well, go to the door on your feet, hop into a shop, on your feet...all equates:  "nothing wrong with her". stemming from this is a belief that we are trying to get 'something for nothing'.

Some see us as 'scrounging' off the state and if we have something 'free' we should stop asking for MORE , even if we still haven't the one Item that in fact, creates EQUALITY. The POWERED wheelchair.

well I can't really, today, explain the complexities of a situation where one day/hour/morning/afternoon I look 'normal' (=standing) and another day/hour/morning/afternoon  look NOT NORMAL (=wheelchair). But I'll try....

Here is the reality:

1. I have Mitochondrial disease (a disease that 'kills' the energy cells(mitochondrion) in the whole of our bodies) I am 24/7 longing to lie down and just sleep. this is not just 'being tired'. it is being one step close to narcolepsy!
2. I have Parkinson's
3. I have muscle myopathy (like muscular dystrophy) My muscles are dying.
4. I have spinal arthritis and severe damage = severe pain (morphine needed)
5. I am hypothyroid (also creates fatigue)

so the next time someone says "you're looking well" or "what do you want?" I'll try to be patient...but there comes a point where I would just Love not have to be explaining why sometimes I am walking and sometimes I'm not. love that someone, no EVERYONE, would understand the complexities of illness/disability.

Sometimes when I'm NOT in wheelchair the only reason is I have no way to travel or I find it difficult to use given the circumstances.

The why's & wherefores' of wheelchair use is not just a simple understanding she either does or doesn't.

It's a complex - she may, may not, does, doesn't, sometimes, most-times, off, on, yes, no....and a lot is determined by environment, support, circumstances: good day/bad day.

no, it's not simple.

I stand, I walk, I use a wheelchair.

Natzification of right wing politics in Europe against disabled people.

The second world war showed us all dreadful things happen if the silence of the majority fail to speak out. We are alleged to have 'learned' from the depravity of Nazi's agenda - the Eugenics - the belief in a 'pure race' where non-Aryan, Jews, Gypsies, Freemasons, Gay people, Disabled people, Elderly people were literally Murdered whole scale! The Untermenschen - sub-normal, the 'useless eaters' (those not productive) were gassed as a 'drain on society'.  Unworthy to live.

www.ushmann.org  First came 'forced sterilization'

 

Nazi Germany was not the first or only country to sterilize people considered "abnormal." Before Hitler, the United States led the world in forced sterilizations. Between 1907 and 1939, more than 30,000 people in twenty-nine states were sterilized, many of them unknowingly or against their will, while they were incarcerated in prisons or institutions for the mentally ill.

 

Still, no nation carried sterilization as far as Hitler's Germany. The forced sterilizations began in January 1934, and altogether an estimated 300,000 to 400,000 people were sterilized under the law. A diagnosis of "feeblemindedness" provided the grounds in the majority of cases, followed by schizophrenia and epilepsy. The usual method of sterilization was vasectomy and ligation of ovarian tubes of women. Irradiation (x-rays or radium) was used in a small number of cases. Several thousand people died as a result of the operations, women disproportionately because of the greater risks of tubal ligation.

Most of the persons targeted by the law were patients in mental hospitals and other institutions. The majority of those sterilized were between the ages of twenty and forty, about equally divided between men and women. Most were "Aryan" Germans.

 

Then came killing.

 

The idea of killing the incurably ill was posed well before 1939. In the 1920s, debate on this issue centered on a book co-authored by Alfred Hoche, a noted psychiatrist, and Karl Binding, a prominent scholar of criminal law. They argued that economic savings justified the killing of "useless lives" ("idiots" and "congenitally crippled"). Economic deprivation during World War I provided the context for this idea. During the war, patients in asylums had ranked low on the list for rationing of food and medical supplies, and as a result, many died from starvation or disease. More generally, the war undermined the value attached to individual life and, combined with Germany's humiliating defeat, led many nationalists to consider ways to regenerate the nation as a whole at the expense of individual rights.

In 1935 Hitler stated privately that "in the event of war, [he] would take up the question of euthanasia and enforce it" because "such a problem would be more easily solved" during wartime. War would provide both a cover for killing and a pretext--hospital beds and medical personnel would be freed up for the war effort. The upheaval of war and the diminished value of human life during wartime would also, Hitler believed, mute expected opposition. To make the connection to the war explicit, Hitler's decree was backdated to September 1, 1939, the day Germany invaded Poland.

HADAMAR

 

 

 .

Meticulous records discovered after the war documented 70,273 deaths by gassing at the six "euthanasia" centers between January 1940 and August 1941. (This total included up to 5,000 Jews; all Jewish mental patients were killed regardless of their ability to work or the seriousness of their illness.) A detailed report also recorded the estimated savings from the killing of institutionalized patients.

The secrecy surrounding the T-4 program broke down quickly. Some staff members were indiscreet while drinking in local pubs after work. Despite precautions, errors were made: hairpins turned up in urns sent to relatives of male victims; the cause of death was listed as appendicitis when the patient had the appendix removed years before. The town of Hadamar school pupils called the gray transport buses "killing crates" and threatened each other with the taunt, "You'll end up in the Hadamar ovens!" The thick smoke from the incinerator was said to be visible every day over Hadamar (where, in midsummer 1941, the staff celebrated the cremation of their 10,000th patient with beer and wine served in the crematorium).

 

In all, between 200,000 and 250,000 mentally and physically handicapped persons were murdered from 1939 to 1945 under the T-4 and other "euthanasia" programs. The magnitude of these crimes and the extent to which they prefigured the "Final Solution" continue to be studied. Further, in an age of genetic engineering and renewed controversy over mercy killings of the incurably ill, ethical and moral issues of concern to physicians, scientists, and lay persons alike remain vital.

 

U.S. Holocaust Memorial Museum

 

 

Are we so far removed from the beliefs of this ideology; that disabled people are people who have 'useless lives'.  I argue not. 

 

During the last few years in Ireland and the UK; Politics of a right-wing flavour has dominated during an era of 'austerity'.  Just as in the first world war when 'austerity' prevailed and economic deprivation justified killing of 'useless lives' we've seen an erosion of rights for disabled people. 

 

Welfare benefits are cut, new taxes are designed that directly impact disproportionately on disabled/il/elderly people (bedroom tax UK) increases in prescription charges (Irl), diminution of public health services for the poor (Irl) Vital grants cut to support disabled children in schools (UK & Ireland) , Mobility & Motorised transport grants to enable easy movement in society cut and never replaced (Irl), forced employment of sick and disabled people has led to huge increases of suicide for this group (UK) . Hate crime against disabled people has rocketed in the UK  (no laws at all in Ireland!). Medical cards for vulnerable people are removed (Irl), and personal supports of Personal assistants (UK & Irl) has meant a return to institutions for many as there are no viable choices.  

 

Discussion of alleged 'voluntary' euthanasia for sick and disabled people has taken off, as they are apparently living 'intolerable lives'. One suspects sick and disabled people are increasingly 'hearing' the message they are burdens on their families and state; economically and socially. The elderly are increasingly left in hospitals as families can't or won't look after them. Mercy killing is almost accepted as sad but understandable as this 'useless life' is snuffed out.

 

But what is pernicious in the new Nazi ideology of today's right wing politics is how disabled people must beg for the scraps from the health services tables. from the tables of employment and transport, from the fashion cat-walks to the shops the glaring invisibility of disabled people speaks volumes of the Nazi ideology of lives that are -untermenschen- useless - not worthy of being seen.

 

As a disabled women of 62 already classed as 'elderly' and not given the help or services that we need, my twin and I have suffered the local Co Wicklow's service provider mentality that clearly speaks, not about our quality of life, but rather about how 'expensive' we are.  Every request for a service is countered , refused on the basis of MONEY/COSTS.  Too expensive equates YOU are too expensive!  'Useless lives'. The sinister thing is, the service providers say what we receive is good!  But 'good' by what standard? By the standard of eugenics!

 

The message this gives is that we are not wanted, either here in Co Wicklow, or on this planet. The Nazi ideology of 'extermination' of useless lives cannot be played out in quite the same way today, 2014, but that does not mean it has been erased.

 

No, it only takes other forms - "you are not worthy of a service - a GOOD service" - and this is justified.

 

The non-disabled 'normal' worthy service providers sleep well at night with no qualms or worries.

 

Whilst we struggle for scraps from the table. HADAMER is not far away.

 

 

 

 

 

 

   

When you wake every morning crying.

I didn't think it would be like this!  Ann, my twin in front, I coming up the rear, saying No to water charges, but NO also to all the austerity rained down on us, the vulnerable in Ireland. We got soaked!  But were prepared to be part of the outrage!

I thought that 'retirement' due to ill-health would be a little more 'restful' , a little more love in my life, in the bosom of my family, in the country I was born in. I hadn't realised that the country I was born in had become essentially very selfish! That my family bar my twin, were engrossed in their middle-class pursuits where every phone response was "I'm very busy", which of course only tells you to 'bugger off'. Where the so called 'caring professionals' really only want a quiet life, and work by rules and budgets - have lost any sense of vocation or CARE.

I wrestle with the lack of Care from anyone. I am aghast at the lack of 'care' from professionals. I, who as a social worker LOVED my clients, from the murderer to the prostitute! I remember every one of them. I CARED for them with a deep sense I had to help them in their lives. I felt that vocation of nurturing, mending, supporting, assisting and loving those I worked FOR. I was never 'better than they', they were never just 'the client'. I was deeply moved and a sister to them. That wasn't 'enmeshment', 'over-involved', it was CARE for I knew the difference and I kept the boundaries. I was just a good social worker...and I WAS good! 

That's me! second from left (orange jacket) speaking at the EU Brussels!

I did good! 

But now I am a 'client', a 'patient', DISABLED - that 'useless eater' in Irish Society. Where a right wing government, hell bent on saving Ireland but losing the people, wreck havoc on the vulnerable - because the vulnerable are not 'Ireland'. The Ireland THEY care about are not even Irish!  The EU, America, Multi-nationals, the rich, the off-shore account-ers, the tax evaders, the crooks, the very people who have no conscience. This is the new IRELAND. This little Island was pawned for Europe, for Germany. Given to the rich exploiters.

As a sick disabled 62 year old where do I fit in, where does my sick, disabled 62 year old twin 'fit in'? We don't!  We are too expensive!  We cost money!  Disabled people drain the coffers of welfare. Did you not know that.  We have to save Ireland, not THEM!

Typical - we don't go in the FRONT door, only the back!

 

You 'hear' the subliminal message daily, weekly, monthly, it erodes your soul.

A morphine patch does not mend the system that needs looking at, nor my body! I have a rare neuro-muscular disease. I use a wheelchair outdoors. I can hardly walk.

• My foot turns in due to dystonia, a muscle contracting condition, I've waited nearly a year for special shoes. Now I think I have a stress fracture in my foot.
• My bladder is not working I need tests on my kidneys but they are booked for April 2015 - by then my kidneys might be irreparable damaged
• I need injections in my spine where spinal arthritis is killing me!  I'm on a list I'm told 9 months it'll be.
• I need a better powered wheelchair (as does my twin) but nearly 3 years of fighting has got us no-where. Even appeals to Enda Kenny has fallen on deaf ears. His office just says "we're looking at it" This means they ask the HSE what's happening the HSE say we are well equipped, end of discussion! But we are not 'well-equipped' we are being crucified. http://youtu.be/FCScN9HeTWM watch this video.

It goes on and on till you just feel you are NOT worth it. You are kicked to the bottom of the pile. You don't matter in Ireland of today. And expenses pile up and up and you fear how to manage, what will happen in the future. Yes you FEAR...daily fear. 

But it is ASSUMED because we LOOK 'well off', that we are. No we are not. My twin is below the poverty line on virtually Dickensian 'welfare benefits', I have a medical card, not much better off. why - because we used our money to get homes we could live in with wheelchairs!  No social housing suitable for disabled wheelchairs users in this Ireland!

And I fear - And the only solution recently was that I go into St John of God for 'depression'. That's really NEAT!   There is nothing wrong with Ireland or 'The System' it's YOU...It's YOU...you are mentally ill! YOU need to be fixed. The doctor said I wasn't coping with it all because my head was not thinking straight! 

Actually, I wasn't coping with it all because my head WAS thinking straight! ...sees it clearly...very clearly...we are forgotten Irish, the ill, disabled and old...we are no longer 'Ireland's citizens'. We are the drain on the economy.  We should die, and we should die ...soon... hence the FG right wingers starve the vulnerable...yes, I see it too CLEARLY.

'The Useless Eaters'

 

Hitler used this phrase to exterminate disabled people in gas chambers

Today we do it 'subtle' !  by not giving services

by not CARING at all

Health servic Crashes in ireland - Patients referred to psychiatrists to cope!

You couldn't make this up. The psychiatrists must be doing a roaring trade with the pharmaceuticals right now. It seems the solution for sick and disabled people frustrated and depressed by lack of medical help is to refer them to psychiatrists for depression. Rather than psychiatrists complaining about the lack of medical care and support, they suggest you go into a psychiatric hospital, have CBT and take anti-depressants.

This happened me last week. I have a neuro-muscular degenerative disease, progressive and incurable. I use a powered wheelchair.

The health service compounds my suffering...the wheelchair they have given me is a monstrosity , it 'kills' my spine which is degenerating and with severe arthritis. Ditto my twin who has the same neuro-muscular condition.

The fight for a suitable wheelchair has been on-going for 3 years. The local manager refuses to send me (and my twin) for independent assessment, though we've asked why not, we are told "you don't fit the criteria", but they won't send us the criteria!  So we cannot get an 'independent' assessment. We asked the specialists in the centre would they do a private (We pay) assessment but they said because they have a contract with the HSE this would 'compromise' their contract. In other words, this independent wheelchair specialist assessment company are in hock to the HSE. so there is no-where we can go for an independent wheelchair assessment. so we're stuffed!

Now I also have dystonia. a painful muscle contracting/spasm as a result of parkinsonism. this results in my left foot contorting and turned on it's side. I cannot put foot flat on the ground. I have waited over two years for special shoes to help me walk pain-free walk. No shoes yet.

I have been in the 'bone & joint ' clinic in St Vincent's three times since late 2013. The referral was made after a huge spinal 'crises' where I was carted off in an ambulance on gas and air after a trip out in my wheelchair juddered my spine so much it went into a huge spasm. Two days in hospital on a drip feeding me pain killers and antispasmodics were horrendous. So referral to 'bone & joint'. I knew I had degeneration of spine, a scan was done whilst in hospital.  The first Bone & Joint clinic appointment I saw a physiotherapist, not a doctor!  this was a surprise. I had to insist on talking to Doc. They arranged for ultra sound of shoulders and a bone scan. the former never happened, the latter I was reluctant to have as I'd ALREADY had an MRI. Second visit they promised injections into hips and back under x-ray guidance (April 2014). October visit here is the conversation between myself and physio:

 

"how have you been since last time?"

 

"well", I said " the same, nothing has happened"

 

"have you had your injections?"

 

"no"

 

"why not"

 

"because I haven't been called"

 

"Oh"  pause "there is a 5 month waiting list - should be any day now"

 



consultant arrives , shakes my hand, and relays that the bone scan (which I eventually agreed to have) showed "Active Arthritis in spine" . I really didn't need a scan to tell me that!  I haven't slept for over three years with agonising back pain.

"we'll refer you to the pain clinic"...  (this visit cost me 80euro as I got a wheelchair taxi from co Wicklow there and back)

ok, here is my astounding question "why did they not refer me there when I arrived in agony in their clinic a year ago?". now I'll have another long, long wait. Meanwhile I am on morphine patch and cannot sleep in bed.

I am occasionally incontinent. Advancing bladder dysfunction is no fun. This is the result of my Parkinson/parkinsonism. The National Hospital in queen's Square London advised bladder function tests. The Irish hospital refused. Put me on a pill. But I need to know if my bladder is emptying and why I have Kidney pain. (Back flow from a full bladder may be damaging my Kidney) . But I suspect at age 61 with a degenerative disease they'd rather save money. Indeed Varadkar, our Minister for Health has asked doctors to 'cut back on tests'. Who will they 'cut', us 'oldy-foggies' ; the 'wrinklies'. We are not an economic asset.  Quite the opposite.

My bowels don't work. The peristalsis to move food through gut has ceased, almost to function. solution "eat small meals often". Meanwhile I feel sick, bloated, in pain and horrendous.

The neuro-muscular decline is suspected to be caused by Mitochondrial disease. A rare disease. Ireland has no specialists in this rare disorder. Myself & twin have waited over a year to be sanctioned to RETURN to the UK to a mitochondrial disease centre in Newcastle University Hospital in the North of England.

meanwhile I cannot walk far, my wheelchair is crap, my spine degenerating, my foot turning in, I'm vomiting from bowels not working, and I'm incontinent.

Who is supporting me -- all and none!

On paper I seem to have consultants in tow. I appear to be having treatment and support...but it is a mirage. When Enda Kenny asked the HSE about our care didn't the HSE managers sent glowing reports of "all they've done for the Kennedy Twins". Just what Kenny loves to hear!  Believe them, Mr Kenny, not us.  classic.

So in frustration in the depths of depression because little is being done to relieve my pain and Broken body and no-one to talk to I'm carted off to a psychiatrist.  I agree to go, NOT, I hasten to add, because I believe I'm mentally ill...I don't. I agree, because a) there was no one else b) I THOUGHT she being a psychiatrist in St Vincent's she'd understand the frustrations of living with crap HSE services. Wrong!  As a true blue HSE aficionado, she tells me BECAUSE I'M DEPRESSED I distort my view of the HSE services.

Isn't that amazing? I mean that is quite a way to conceptualise a patient's despair of the HSE services.

So I'm the one who needs 'psychiatric' treatment because I don't see the joys of the HSE medical services!

NO - I DON'T - On both counts.

So dear wrinklies with any neurological diseases/rare diseases/and body crumbling sitting in crap wheelchairs on morphine - We'll just give you ANOTHER pill to re-align your HSE 'distortion' and make you see us with halo's and wings all fluffy and nice!

Not on your nelly you won't. The HSE is fallen, is defunct, is 'not fit for purpose' and I'm not prepare to be the sacrificial patient thrown into the abyss of a psychiatric hospital for CBT and Anti-depressants because Doctors/HSE/GP's stick their head in the sand like an ostrich and pretend and 'play' medicine in the LEGOLAND of Irish Medicine.

Yep!  The pharmaceuticals are high as a kite with the situation. Anti-depressants are rolling off the shelves.  not down my gullet they're not!

My Wheelchair, My Life-My Right

It's pretty basic...if you are sick and disabled and cannot walk a WHEELCHAIR is going to be life-enhancing, exciting, enriching, glorious mobility, glorious INTEGRATION, PARTICIPATION...Pretty simple, pretty basic. but pretty MARVELLOUS!

But needless to say, you cannot just throw any wheelchair in stock at a person who needs one. Bodies are different, like shoes. You would not wear second hand shoes because shoes mould to the person who wears them. Thus second-hand does not work and is actually damaging to feet. The same applies to wheelchairs.

But now here in Ireland the HSE (Health Service executive) community primary care teams are doing just this. Giving second hand rubbish to clients. They break down regularly, need repairs, endless phone calls, technician call-outs...endless waiting for mobility to resume!

But even giving a NEW wheelchair does not work, because there is new and new!  The wheelchair must be assessed according to your condition. The wheelchair must be 'condition appropriate' , not just anything on wheels.

The HSE services now believe 'anything goes'.  We've given you a wheelchair, why are you still complaining.  Why...because it's killing me!  That's why. 

It's causing profound pain, distress, unbearable suffering...that's why.

And why has this happened?  Because senior OT's argued to be 'specialists in wheelchair assessments' are NOT!

myself & twin had a wheelchair/seating assessment called a "skilled professional assessment" done by a senior OT in a room that only had a bench.

•  No wheelchairs in sight (ours HSE wheelchairs were in our Van-were not requested to be brought in to room)
• There were no other wheelchairs in this room with only a bench
• There were no cushions, wedges, backrests, equipment whatsoever to determine how a suitable wheelchair could be comfortable or suitable
• there was nothing - only a bench.

how can you do a wheelchair assessment with no wheelchairs available?

how is rolling up a scarf and shoving it under a buttock to straighten the disabled/ill person (my twin) who is sitting on this bench...constitute "a skilled professional assessment?" 

how can a wheelchair whose wheel flies off in use because they were put on with the wrong bolts be considered "a skilled fitting of wheelchairs"?

How can a wheelchair which steering arm falls off into the road when crossing be considered safe or usable?

How can a wheelchair with no suspension coils for outdoor use be called suitable for elderly disabled people with degenerative spinal disc disease ?

how can a wheelchair supplied with dodgy motors causing dangerous 'fishtailing' (a phenomenon where you cannot steer straight on a cambered footpath) be called 'suitable'. I had reported this over a year ago but it was ignored and only this week did a technician come out to see why my wheelchair was not 'holding' its charge. He informed me the motors were defective, one being 'stronger' than the other which had little function.  On speaking to my OT she nonchalantly remarked "that would be why it was 'fishtailing'" - but I told her this nearly a year ago and nothing was done.  I was left with a dangerous wheelchair.

and so it goes on and on...

On asking for a private independent wheelchair assessment from the only skilled wheelchair assessment provision this side of Dublin I was told they couldn't do this because "they work for the HSE"  but they are NOT the HSE!  So I guess they didn't want to lose their contract by assessing the Kennedy Twins and having to critique the HSE wheelchair provision.

I was told by a senior HSE official 'private independent assessments would not be 'accepted' by the HSE. so you have no leg to stand on!  a private company won't assess you for fear of losing contracts with the HSE, a private independent assessment would not, in any case, be 'allowed' by the HSE. You are scuppered by an evil regime, dead set against clients, service users. Oh yes...evil is the only word to use.

I am demonstrating - my twin is demonstrating on the 17th September outside the Dail at 11am to protest our wheelchair provision and ALL cuts to disability services.  Can't wait!

Pope Francis thanks Irish teenager for supporting mother

Pope Francis thanks Irish teenager for supporting mother



nice but easy to do.  Where are the BIG gestures.