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.

Political 'abuse' of disabled people - an email to my politicians

On 25th July 2014 I winged this email to my local County Councillors, a TD and a few other 'key' people. NOT ONE, not ONE person replied! 

 

I am shocked and appalled. I know some are away, but others are not. Maybe next week...wait & see.

 

 

 

Dear All,

As you know I have been engaged at the 'coal-face' more than I'd like to with the HSE over services in the community.

 

and being an intelligent woman, former nurse and social worker, now living with a rare neuro-muscular disorder more than most, I see the flaws.

I am not 'sitting back' and doing nothing. that's not my 'style', much to the annoyance of service providers. for I can attest they do not LIKE service users who are empowered, intelligent and point out injustice and unfairness. there is, of course a cost to my position.

Service providers become bullying and then write and say much about me - usually negative  - to destroy my 'reputation', my 'credibility'.  Those who 'complain too much' (whatever that means in a context of begging for a proper support service), are quickly in Co Wicklow labelled a 'serial complainer'. that eases the conscience of the service provider.  Blame the client is better than blaming yourself, or the 'powers that be'. It's simply...easier.

Doing this service providers seek to stem the vision of reality. For REALITY is what I place before them. A person who NEEDS a service or services, which allegedly  cannot be provided due to 'no money' is a person who makes the professional feel impotent, worthless and useless. To be reminded by the client that your job is almost, no more than a token gesture rather than 'professional' and all that means is soul destroying.

The picture, the stark picture, of sick, disabled and elderly lives ruined by service providers who are aggressive, argumentative, in denial, scapegoating the client and rather than being honest and caring they become vicious and attacking, this is my reality, and also the reality of people I know and people I love, like my twin sister, who has this same disease and more! and who has more cruelly been abused by service providers. Yes, that's the word I will use.

This is NOT professional care. This is bullying of vulnerable clients. I sometimes see where my service providers are coming from. Tired and stressed that they cannot provide a service, they attack the client for asking.  It's called 'scapegoating.  But it cannot be condoned. It cannot be allowed to continue.

I ponder on whether or not the 'politicians' are aware that, in reality, there are NO public health services to speak of. We have NO community service. NADA, does not exist.

Let me tell you what MY position is. just ONE person in Greystones, in Co Wicklow....

I live off benefits and have virtually no savings. I may be intelligent, middle-class, professional with 'Dr' in front of my name but that does not mean I have money! I don't. However written on my twins files (obtained under FOI) there is a statement "we believe she has independent means" (WHAT!??? - my sister has no money at ALL). where this view comes from is a mystery. But lies also serve to deal with the guilt the service providers feel. Or if it is NOT guilt, it is evil.

I need basic stuff...

Shoes; due to my neurological disorder my left foot turns over. Think walking on your ankle bone! I cannot put my foot flat on the ground due to Dystonia (muscle contractures). I need special shoes.  this morning my podiatrist told me special insoles - second best and have not, so far, worked (not shoes - which I need) have NOT been sanctioned by the HSE. I must walk on my ankle bone, I must SUFFER the pain of this, the restriction of this, the inability to walk!

Wheelchair - I have muscle myopathy - Muscle wasting similar to muscular dystrophy ....yes, serious stuff. HSE refuses, refuses to give either my twin or I a suitable powered wheelchair.  Oh we have been 'assessed' by SKILLED professionals as not needing 'high-end' powered wheelchairs.  there is no such thing as a 'high-end' wheelchair. this is a wheelchair with additional features that suit better certain clients with certain conditions. calling it 'high-end' suggests I am asking for a Royals Royce when I allegedly 'only' need a chair on wheels. !!   I am not ALLOWED say why my 'chair-on-wheels' is totally unsuitable. Or why I need a better powered wheelchair. 

bed - I have 5 degenerative lumber spinal bones. excruciatingly painful.  a hospital bed has been supplied, but still I do NOT sleep past 3am. The nurse promised about three months ago to supply a mattress 'topper'. It has not arrived. My twin has also severe 'bed' issues, not being addressed. also due to pain.

Now pain is horrible . no-one can bear it...we all try to avoid it, alleviate it. The HSE prefers to ignore it even exists!

Physiotherapy: I have a lovely physio. However physio now consists of a visit with sheets of paper with exercises pictured on them . this is your physio session. She tells you how to do exercises but does NOT touch your body, even if your muscles are in a dystonic mess (spasms) she will not manipulate these knots to relieve the pain.

So you stick a morphine patch on become addicted, and feel sleepy dead all day.

There is no transport service to hospital so my approx. 3 visits per month to consultants costs 300e for taxi's.

My prescription charges are large.

my visits to GP frequent (luckily I have a medical card)

So I'm left here at home with a bed I can't sleep in, a wheelchair I can't use (it crucifies my back ), shoes I can't walk in and no service to get me to hospitals.

Then the service providers wonder why I pick up the phone and scream in frustration and pain, tiredness and despair. Then I'm called 'aggressive' and the phone goes down. A neat response which completely avoids responsibility and 'scapegoats' - yet again. whichever way we look THEY (HSE) 'GET YOU!' .

Ditto for my twin sister...who as some of you know has been 'targeted' for even worse treatment by the HSE due to her upset and distress (which she also expresses loudly) .

It seems to me that POLITICALLY clients/service users are Expected to 'not complain'.  After all the whole country is in 'austerity mode' and we should 'understand' the countries broke!  We should buckle down in 'war' mode. Accept the deprivation, accept the hardships. accept your life ebbing away in misery and pain.

No the country is NOT broke. Nor are we in a war!

the country finds money for e.g. the mother and baby enquiry, the Palastinine relief effort, for upgrading committee rooms, for hikes in salaries in Government or perks to high office holders.

I am not saying don't do inquires into mother & baby homes, no that is needed, so too relief for Palestine...no, I'd be the first to support these decisions.  But I want to ask you all...

WHY do sick, disabled and poor and elderly have to suffer the political abuse of no HSE community services?  For this is what it is! 

I've spent all my professional career in the child protection field. we social workers called to account parents who failed to care for their children. There were strict sanctions, strict care proceedings, law was available, jail too.

but the corporate 'parent', this government, can abuse the most vulnerable in this state and just walk away as if it doesn't care, we don't matter.

Enough is enough. 

I say to all you politicians, those who abuse us daily, you are causing profound suffering, profound pain, profound depression.

the priorities are all in the wrong places.  A HEALTHY nation is a nation that can WORK to repair the brokenness. But we are like the soldiers on the River Kwai, beaten daily, starving, and dying from a regime of abuse towards us.

on OUR backs of deprivation and hardship you intend to 'rescue' Ireland for the elite. Medical cards for under 6 years old - for all - regardless of income,  means WE suffer.

I am not a politician , I'd hate to be one, except perhaps if I could be an ethical compassionate one. But I say this....

this country under THIS government has created more suffering for underprivileged people than at any time in the recent past.

I don't want your excuses e,g. it's all FF 's fault, it's the Bankers fault, it's the EU 's fault. I want our politicians to face the reality of sick, disabled and elderly people suffering in a community which has NO PUBLIC SERVICES and where professionals are teetering on brinks of nervous breakdowns and lashing their very clients in THEIR despair!

You have created an apocalypse ...annihilation...suffering beyond measure.

I am angry,  not just for me, not just for my twin...I am angry that so many in Ireland suffer because of choices made by right wing politicians who frankly, don't care.

I doubt this missive will impact anyone's soul - except the few here who know it's not aimed at you!  You'll know who you are.

But writing it is a damn sight better than doing nothing! 

Yours Sincerely

 

Margaret Kennedy

 

The wheelchair given by HSE to Ann Kennedy was 11 years old. it now sits in her hallway - dead as a dodo. Finally it hit the dust. She was told (via her twin) that a replacement would be set 'within the next few days' she's STILL waiting!

We have missed several events because Ann has no powered wheelchair.

 

'Outwith' the Church - Sunday Morning

It's Sunday...the traditional 'day of rest', the 'Church' day for whatever Christian Church you belong to. I feel the 'outwith' status of Church I now inhabit. The threshold of Church I cannot now pass for a myriad of reasons, none essentially to do with God or Jesus with whom I have no argument.

I searched the internet this morning to find a place I could be...to no avail. I don't want the traditional, nor the wildly ultra 'other' which often irritates me too.

There has to be 'a place'. it's finding it that's proving difficult. It has to be feminist...Christian...but not too 'alternative'.

I like to challenge, I'm not a subservient woman, bowed down by years of orthodoxy. I had my 'traditional' era somewhere between age 24 - 30years. Thereafter I diverged on seeing the mirage of a black buttoned up cassock walk into my Church in Hackney straight from Rome. He only opened his mouth 5 minutes when I knew my time was up. it was a blessing in actual fact. I found my voice and strength and 'womanhood' never seemed so urgent to reclaim spiritually.

I was 'tainted' woman, not of the flesh, but of the spirit. that spirit of misogyny lurked disguised as 'truth' somewhere deep inside and I did not like it. I spent years 'vomiting' up this spiritual bile! and it took years to understand...and then I was free and 'outwith'.

But what is freedom if it means 'on one's own'. the yearning for spiritual connection is deep, unfilled and lonely. The days with my fellow travellers, CSSA, were the closest to my Nirvana, my fulfilment, my dream of a 'Spirituality of Vomiting' - the stuff we were MADE to swallow.

But we filled that void with love, humanity, vulnerability, sharing, crying and praying in authentic 'oneness' with a God of understanding. and the vomiting ceased.

The icons of our 'theology'; doves, leaves of trees, Teardrops, brick walls, coloured ribbons held the meaning of our pain and suffering and we for short periods were NOT alone. and in that space Jesus came, light-footed, gently, softly, carefully and tenderly. He did not bulldoze minds and hearts and spirits with dogma, certainty and masculinity. No, he joined, but did not order, force or make us into some mould that spoke 'Church'. A Church proscribed by maleness and power and preaching and domination.

He came as a spirit in each of us, wandering in the dessert, crying in the wilderness, seeking, water and refreshment. And he found us, and he loved us. and we were at the well, being nourished. Together.

and we were right, we were perfect in his eyes. He, with US,  filled our liturgies with healing and with light. and we left more whole, more WOMAN, stronger in our self-belief.

We did this...we women, gathered around the hearth and DID this TOGETHER.

Whether Jesus is male or not, was immaterial. His likeness seemed female. Motherly, warm, tender and silent and waiting.

The Wall Hanging: 'A Visible sign of our presence' - Christian survivors of Sexual Abuse.

and this I miss...I miss those WOMEN.  I miss that SPACE.  I miss that PLACE.  It was not 'Church'...it was MORE than Church.

I am 'outwith' , and I feel lonely. 

can I find that place again...?

Land of the Free? Ireland's inertia

Since coming to Ireland I've tried to utilise my skills and experience as best I can. Every effort has either been ignored or abused.

I try to do a survey of disabled, elderly and sick people's lives in Co Wicklow, only 10 stepped forward. Things are not good in Co Wicklow regarding community supports but people WILL NOT react to this deprivation. Say nothing in case you loose the little you get. I know the feeling but sitting there 'taking it' won't improve the situation. But challenging the status quo is not 'in the blood' of disabled people. One overnight demo to save Personal assistants -PA's (for themselves) did not save PA's for ALL disabled people. One big disability march did not equal a revolution! And there has been none since despite government cuts continuing to decimate disabled people's lives.

I start a group DAG:T 'Disability Action Greystones: Together' in my local town, thinking 'just do something small', for disabled and non-disabled people to come 'together' to 'make an inclusive community'. There are 4 stalwarts on the group and work hard, there were a few others but they left. But every time I post on the Greystones forum about a DAG:T issue  I'm abused by trolls and no one defends me. The moderator just says "free speech" . The seriously horrible disablist remarks such as I'm not disabled and don't need a wheelchair because "I've seen her walk" is allowed.

Yesterday it was almost asserted I didn't need to use taxi's for disabled wheelchair users simply when I asked where in Greystones these taxi's were? I was attempting to draft a wee flyer of wheelchair accessible taxi's. I had to delete the post.

Such abuse hurts because it's from the very people I meet in MY CHOSEN TOWN to live in. This is a close community. Everyone knows everyone. I am appalled not just at the personal abuse but at the acceptance of it. I really, really intended to generate a well-spring of 'inclusiveness' here in a sea side town not easy for wheelchair users. But I am not the only one targeted. Other disabilist comments are made about other disabled people without any sanction. even if you request the moderator's to intervene. I can only conclude that DAG:T is very much needed but it's going to be an uphill struggle. and political disability activism is not favoured, only the charity model! And I despair of this 'closed' town who know nothing of Disability except a charity model.


I then switched to my other area of concern...clergy sexual abuse and asked if people would like to contribute to a wall -hanging similar to one done by survivors in the UK in 1990's. I thought it'd be an 'easy' way to do something of value and become a 'visible sign of our presence' like it did in the UK.   I posted on a clergy sexual abuse site. not one person either liked or were interested. OK so maybe this group is more men than women...even so...my EFFORT  was not even acknowledged.

Now either I'm seriously out of touch here or Ireland is seriously 'Dead'. I don't think it's me. I think people in Ireland after years of Catholic Church domination are 'sheeple'.

There is NO real user-led uproar about issues. What there is tend to be seen as organised by either fanatics or fringe radical left political lunatics!  I've come to the conclusion Ireland is not a country where 'dissent' is liked or supported, despite our great history in freeing ourselves from 'slavery', (only now to be 'slaves' of the EU TROIKA and especially Germany).

It's not that people don't complain, they do, and the clergy abuse groups and the Magdalene groups have been vocal, loud and enormously successful, and still active, and now the mother and babies home groups are raising up . So 'user-led' groups have changed the scene , at least in that area.

The disability groups are, unfortunately hampered by established 'disability charities'; no active 'user-led' groups exist. Those disabled people who do challenge are those employed by the charities. So disability 'activists' are not independent. and I've found 'getting -in' to these already established disability groups almost impossible. WHO ARE YOU is almost roared in your face!  I'm never invited and never told what's going on, It's lonely and it's hurtful and I don't think I've done anything 'wrong'. Believe it or not I am shy, and generally nervous, I have to be 'helped' to join in. It does not come easy.

But 'dissent' is just not HERE!  Keyboard warriors urge people to protest, demonstrate, challenge and no-one does or says anything. It's left to the few who do on a regular basis...and these are viewed as cranks. and others mumble "what's the point?"

The community activism problem is more acute if you are a 'blow-in', you come from outside. And I did. There is suspicion, hostility for the 'outsider' trying to 'get in'.  But I don't know HOW to 'get-in' other than to try what I've always done and successfully in the UK. that is...to do something.

Am I culturally 'out of step' ? Have I not done an 'Irish' thing? Or is the Irish psyche so damaged by Catholicism and 'do as I say' then we'd all like to admit, which has created a whole nation of people who don't know the word 'activism' or 'direct action'?  I think so, sadly, I think so.

I will keep trying to help here in Ireland because 'helping' is what I like to do...but constant knocks do nothing for my self-esteem and Ireland is proving a hard place to live.

When all we want to hear is GOOD News!

When all we want to hear is GOOD News!

Failures of Disability Activism in Ireland, no ‘army of discontent’

 

This was NOT a ‘good news’ week for me.  But as a disabled/sick woman I am not allowed to complain.  Not allowed to express what people may perceive as ‘negativity’, ‘moaning’, or ‘self-pity’. 

I suspect as we all suffer in some shape or form ‘austerity’ politics, all read daily of the misery of ‘austerity’ from homelessness, cut medical cards, increase in a range of ‘taxes’, sick people not getting treatment; that if I ‘complain’ I’m seen as ‘the woman who thinks she’s the only one suffering’. There is reality in that, I know I’m not the only one, yet when personal is so painful I’d like to know someone will listen.

But in expressing the truth, the frustration and the injustices of health care and community non-provision to myself and twin sister I’m seen as the sick person who is not ‘Brave’, ‘stoical’ or the person who on dying they might write “she never complained”.  Well there’s no chance of this latter comment being etched on my gravestone. I will, no doubt go down as the ‘grumpy sick/disabled witch’ who reminded people too often of a) their own suffering (fellow sick/disabled people) and b) reminded ‘well’ people of their guilt and collusion in doing nothing to make sick/disabled people’s lives better and c) reminded HSE professionals of their own complicity in creating suffering on those they profess to ‘care’ for, but mostly d) for placing full responsibility for the ‘chaos’ of my life, and other disabled/sick people’s lives, at the Dail gate! (Particularly Minister Kathleen Lynch who ignores everything I send to her and her secretary who does a marvellous job of not allowing me within earshot of her). 

This is where the collective national plot has been lost!  Too many acquiesce – stay silent – or ‘bravely bear their sickness/disability’ towards sainthood and admiration. Or else they take on the ‘brave-quiet’ persona, so much applauded.

Is this why the Irish Wheelchair Association sells angels when fund raising? Is this why more and more fund-raising is based on ‘look at those poor sick/disabled people’ rather than challenging policies that create our hardship in the first place.  It is far easier to see us as pathetic ‘poor’ miserable creatures than vilify a government hell bent on creating suicidal sick and disabled people. 

It serves non-disabled people well to put us in the ‘brave’ box rather than the ‘agitator-fighter-complainer’ box.  I know the box I’d rather be in.

That’s the box I inhabited this week after a totally and utterly futile visit to my consultant.  Who was more intent on writing facts in my file than listening to my daily living ‘gripes’. Who; basically, is not able to have a CONVERSATION about the complex issues I face.  Who was it who said only women can ‘multi-task’?  Well I went in with the ‘multi-task’ and all he wanted was singular tasks. If my bowels don’t work take lactulose and stop the morphine!  Simple.  Er well, not that simple. I need the Morphine and lactulose will not help a bowel that, due to neurological/mitochondrial disease, no longer has peristalsis.  Oh and what do I do about the medication (which I need for parkinsonism) that lowers my blood pressure to such an extent that I recently landed in hospital on monitors for 24 hours? That didn’t get discussed. Why?  Because I forgot! In the multi-tasking of dealing with mitochondrial disease, muscle myopathy, parkinsonism, dystonia, walking, sleeping, pain, foot inversion, nightmares, night time tinnitus; (sounding like a huge extractor fan, which keeps me awake), urinary incontinence and just a few more things too, I forgot!  All which needed to be addressed in my 6 month visit of less than 10 minutes, yes I slipped up.

This consultant (public) was on a fast moving train and I couldn’t get on it!  My train was slower and he couldn’t get on mine!  (or wouldn’t). We both went through the station on different tracks. Consequently I left with NOTHING addressed, but he had it all written on the file. That was important. I came out depressed as hell, feeling not heard, only a number on the seat of his fast moving train. There was no passenger there at all.

A few days later the HSE OT department refused my request to move my hospital bed from a front room to a back room so that I could be in a room where I could open windows for air in summer. After over a year battling for a suitable powered wheelchair for self and twin (we have the same rare disease) which as yet is not forthcoming, refusing this ‘minor’ request (and I thought not too onerous a job),  was a blow too much.

This was to push me over the edge. It was but a simple request and as a 61 year old single woman, with no family support, how was I to dismantle a specialised electric bed and move it? It seemed insurmountable – the last straw. Why do they make it so hard I cried? I was weary and very tired.

Then I decided (totally bad idea, and will never be repeated) to express all my frustration on my local village facebook forum.   Of course I should have known better…that the affluent village I live in only wanted ‘happy/brave/sick/disabled people’ whom they could patronise in fundraising events.  I was lynched. Apparently I was always moaning, always criticising, always self-pitying. I refute that entirely, I raise disability issues as an activist but in this village disability equality is simply not on the agenda. I had discomforted them.

The local lynch mob comprised three people, but their vile comments were ‘liked’ by seven more. None of these people know me, nor I them…their vicious words had me weeping all day and night. None knew the battles I was having with my body, my doctors, or my alleged HSE ‘helping’ ‘professionals’. 

They didn’t know how depressed I was that day or the accumulated frustrations that had reached a despairing pitch of anguish and they didn’t care.   I now understand why teenagers are suicidal, or commit suicide when ‘trolls’ target them. It’s a vicious medium facebook. I was so distressed I rang the Samaritans at 2.30am suicidal and weeping.

Now on reflection I realise it was naïve to think a village facebook forum would offer kind supportive words when all people really want is the ‘heroic’ disabled person, carrying on life as if not a care in the world. A hero who local people are proud to have in their midst, not a miserable git like me!  

A hero who will make non-disabled people feel comfortable in their role as helper to those ‘poor disabled ‘heroic’ people’ for whom we can raise funds for’.

Sad fact is, disabled people have colluded with this ‘hero’ persona by silence.

‘Activism’ is not political in the sense of ‘in your face outrage’ about the plight of hundreds of suffering disabled people.  ‘Activism’ is polite, careful, conciliatory and democratic’. One big demo does not make a movement of disabled people’s voices; ‘enough is enough’ which can be demonstrated daily or weekly in the media.  Instead disabled/sick ‘complainers’ like me; are targeted by vicious trolls as ‘moaners’ and ‘self-pitying’. I am not the grateful!  

If disabled activism was a high profile event, my ‘complaints’ would have been seen as political, not personal, or where the personal IS political.  But in that void all ‘complaints’ are therefore seen as ‘moaning’.

No, we have, and I blame disabled people just as much as non-disabled people, become the ‘hero’s’ and the ‘brave’ and fallen victim to the pressure to acquiesce rather than to charge forth and raise the army of ‘discontent’.  This is facilitated by our ‘charities’ who fearful of losing funding are ‘careful’ how they protest and in ‘carefulness’ collude and fail to represent the reality. Even worse squander money meant to help us on senior employee salaries, and employ relatives and friends, making a cosy little network on the backs of our suffering. Even worse reduce us to the ‘cripple’ needing funds rather than the ‘cripple’ crippled by society and government!

This has led to professionals who are apathetic, disheartened or comfy, and a public apathy where looking after no 1 takes priority over sick or disabled people.  There is anger towards us, subliminally ‘blamed’ for requiring benefits or medical cards, increasingly portrayed and perceived in the media as ‘drains on the economy’. This provides ‘permission’ for government and the HSE to cut with impunity most community services. After all, we ‘cripples’ do not advance society, no we impede it.

This all happens because disabled/sick people do not stop it, (nor anyone else) and with no ‘disabled army’ of discontent, people like me are vilified, locally and nationally for sharing the pain of oppression in a political system of oppression.

This is all satisfactory for the majority of the well/’able’ population, who will not rise against this political oppression of disabled people, and disabled people have lost the fight to mobilise a force for radical discontent in a country where ‘oppression’ has become the political norm.  

 

Dr Margaret Kennedy PhD

Disabled, disability activist, political ‘complainer’!

Austerity power wheelchair assessment

On Friday I had what was called a 'seating assessment'.  I was assured by the OT manager this was not a wheelchair assessment. I still don't know the difference.  The history of this assessment is that Wicklow HSE refuses (to date) to give my twin a decent safe power wheelchair, and mine is not suitable either.

With a new OT manager on board she offers a 'seating assessment'. But it was not a SEATING assessment.  Everything about me was assessed, my eye sight, my movement, my spine, my 'seat' (bum) and ability to move arms and legs. asking questions about concentration, memory and focus were in fact quasi-psychological testing.

I became profoundly distressed in being asked to do movements I can no longer do and burst into tears.  My twin became distressed over the eyesight tests, as it became more apparent this was NOT a 'seating' assessment but a full assessment of our ability to use power wheelchairs. Furthermore it was a MEDICAL assessment done by an OT.

Now this WOULD be good in the normal scheme of events, but Ann and I were fully OT wheelchair assessed in 2012. We were fully assessed medically in London in February. We have been driving powered wheelchairs for two years.  crap HSE second hand ones. But there has  been no 'fault' on our part in driving or using these power wheelchairs. 

The faults are with the power chairs given where wheelchair tyres split, wheels fall off, steering arms fall off etc. dangerous machines, yet the manager said 'health and safety' was paramount (hence the assessment).  But as Ann points out 'health & Safety' is not being addressed by leaving Ann with a wheelchair where wheels fall off, needs new break pads, and has defective motors.

This assessment was NOT about our NEEDS, no, it was about "how can I make sure we don't give the Kennedy twins power wheelchairs"?

When all tests were completed she had to agree we needed them.  But then went on a 'speech' to tell us that the HSE could not provide 'high end' wheelchairs for us, such as wheelchairs with tilt facilities and headrest, etc.  Well excuse me, we have muscle myopathy and sitting bolt upright with no-where to put head is very difficult indeed in various situations such as waiting in outpatients (anything from half an hour to 3 hours) , travelling on long train journeys. Weak muscles and profound fatigue from a disease that causes the energy making organelle - mitochondria- to die is surely an important aspect of our condition?

Then she mentioned that as we 'could walk' this was another barrier to provision.  This is a completely ignorant comment.

wheelchairs are not just for those who cannot physically walk...they are used by people with a range of diseases from Cystic Fibrosis, Lung diseases, heart diseases, muscle weakness, extreme fatigue due to disease processes. Those who , essentially, cannot walk far...We fit that criteria due to five separate processes a) parkinsonism b) mitochondrial disease c) dystonia d) auto-immune diseases e) muscle myopathy.

Coming away from the assessment I was both angry and upset.  Upset by having to 'prove' I was not trying to 'filch' the system, having to 'prove' I was sick and disabled, having to do tests I could not do, and basically being made to feel that in asking for decent, good, safe, stable power wheelchairs designed for our needs constituted asking the HSE for 'high end' wheelchairs.  Even if we were, if it fits our needs so be it!

this was an 'austerity' assessment, a manager trying to see whether we needed power wheelchairs...whether she could deny our needs.

The whole conversation afterwards proved it! I have no doubts about it, Wicklow County Council do NOT want to give disabled /sick people DECENT wheelchairs!

Second hand, reconstituted wheelchairs of 11 years old is a disgrace and a perversion of 'care'. Its time we disabled people told the HSE that wheelchairs are not a luxury item.  'High end' is what is needed for MOST sick and disabled people.  Not crocks with bits flying off!

We will continue to fight....

But why should we have to?

The Hippocratic Oath

You might think this is going to be a 'poor doctor under so much pressure' blog.  But it is not.  The principles of medicine are just the same as they were pre-austerity as they are now, post austerity.  The Hippocratic oath used to be sworn by all doctors but I believe Irish Doctors no longer swear it. Such a pity. 

Basically most people believe it's perfectly simple: "I swear to do no harm" .  Yet daily we hear that Doctors may not do 'any harm' by actions performed but MAY by actions NOT performed! In others words ignoring issues does harm, but does not constitute , necessarily, misconduct. 

Not referring a patient to physiotherapy, or not agreeing for a letter of referral may not be seen as 'misconduct' as doctors can usefully argue "it was not necessary - in my view" .  Thus they save government money by keeping clients away from these services.

Part of good doctor-patient medicine is communication.  but this is not happening in the public sector. you email, you write, you phone but in the public sector RARELY does a doctor respond.  This is true in Ireland as well as in the UK.  I know.  However if you are a private patient the 'communication' link keeps the patient engaged so that the patient comes back and gives you MORE money, so it's in the best interest of private doctors to 'communicate'...and they DO. I know.

It is NOT in the best interests of public doctors to communicate with patients (outside their outpatients appointments - which can be 6 months to a year apart) because they are not rewarded for doing so. It takes up his/her time, the patient is not paying you and sure as hell the public sector HSE won't be paying you...so don't bother communicating.

Take an example of a patient who persistently rings her public consultant's secretary to seek a few words, even an appointment with her consultant to have continuing, to them urgent or at least distressing and important, issues 'sorted'. Well it doesn't happen.  Endless emails and phone calls are ignored and the patient becomes more and more distressed, more and more frustrated, more and more feeling abandoned, isolated, rejected. Such rejection sets up a deep hurt and further deep need to 'connect' with the consultant who can help him/her. So the cycle continues....more emails from patient.

What happens then.  The consultant becomes raging and angry and sends a letter to his/her GP to say if the patient is 'unhappy' he/she should seek another consultant. Perfect.  How to win friends and influence people.

I know this consultant and I was not happy with this communication to the GP. cc'ed to the patient. The patient was NOT contacted directly.  This is not nice, in fact this is horrible.

But such is the position of 'austerity'; austerity is creating very poor practice indeed.  Consultants and GP's take it out on their patients and somehow create a scenario that it's all the patients fault, and nicely gets off the hook as the patient is blamed.

Bring back the Hippocratic Oath before the ethics of doctors becomes so bad that the patient dies.


  http://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&cad=rja&uact=8&sqi=2&ved=0CEkQFjAD&url=http%3A%2F%2Fen.wikipedia.org%2Fwiki%2FHippocratic_Oath&ei=6HUxU6vMHKe_ygOsmYKgDw&usg=AFQjCNFFOnRUiIW386ElTmQV_WKlNBhMfQ&sig2=mOG3IYjGk5i7bcRdU_drag

'whistle-blowing'

‘Exposing – Whistle-blowing – going ‘outside’ in the pursuance of justice for vulnerable people.

Dr Margaret Kennedy PhD

 

Today in the Irish Times my case against the Brothers of Charity (BOC) , the HSE and the HSE (West) in the High Court clearly describes ‘vindication’ following what I believed were defamatory statements made about my professionalism and also inaccuracies that I had not reported concerns to the Brothers of Charity, which I had done, verbally and in writing, said in a published HSE review of Client Protection services in the Brothers of Charity Galway.  

As a social worker, a social work trainer and specialist on Disability and abuse whistle-blowing was the hardest thing I have ever had to do in my career.  ‘Whistle-blowing’ the report (The Kilcornan Report’) to the Irish Times in 2003 which described shocking living conditions in one residence for intellectually disabled people in the BOC institution resulted in my losing my job with the BOC (and another at a second Irish organisation who wanted to ‘Gag’ me with a contract not to go to the press…which I would not sign).

The next hardest thing was to read in the HSE document; the Mulvihill/Murphy Review (2006) that I behaved unprofessionally and that I had not shared any concerns to the BOC managers.  This reported to Mulvihill and Murphy by a senior person within the BOC organisation. Fortunately for me I had written proof I had done so!  But it was painfully distressing to have my reputation sullied in such a manner.  I had always worked as a social work trainer and consultant out of deep love and respect for vulnerable people.  Child and Adult protection within the disability field was a dedicated route I had chosen and almost single-handedly developed in the UK and Ireland as no-one else at that time was much interested in this side of protection work.  

Even today the protection of disabled children and vulnerable adults is still not sufficiently recognised or dealt with.  In Ireland there are no vulnerable adult policies in client protection. The abuse of disabled children is largely overlooked.

Today I feel ‘vindicated’.  I was able to ‘call to account’ agencies who perpetrated grave injustice against a dedicated worker. 

However are we further forward in our practice?  There are no whistle-blowing policies that would protect staff. In a climate of austerity and recession will workers whistle-blow if they know they will be sacked for doing so?  Could it be, staff will ‘keep quiet’ to protect their jobs?

Whistle-blowing is the ultimate ‘last call’ in the framework of ‘Client Protection’ but this is not yet acknowledged.  Though I have to point out the last sentence in the letter of vindication the Brothers of Charity, HSE and HSE West did write:

“We accept that it is the right and obligation of staff to have recourse to raise concerns in the most appropriate forum and advocate for the rights of people with intellectual disability”.

This was an acknowledgement I requested and significantly, to their credit, they included this statement.  It can now be, forever, a statement of permission to workers to ‘whistle-blow’.  For surely as we do our work the ultimate is to protect vulnerable people from abuse, regardless of the implications to us.  That’s a hard reality but if it’s not the ultimate challenge then we are colluders.

But I am still saddened, no angry, that despite the McCoy report (Nov 2007) and the Hynes report (2009) intellectually disabled Victims of Brothers of Charity (and other staff) have not been afforded the full scrutiny of a statutory inquiry.  The McCoy report was deeply flawed and can only be described as a partial narrative account of sexual abuses perpetrated within the BOC against vulnerable children and adults. It failed to call to account and indeed in one part almost blamed the victims themselves by declaring the BOC had a difficult client group to care for.

Alan Shatter FG in opposition said on 13^th December 2007 “I want an inquiry by the department…the report [McCoy] did not travel the distance and produce the comprehensive information it was required to do so”. Jan O’Sullivan on 29^th June 2010 said “ outstanding issues need to be clarified with regard to what happened in Galway” saying at that time also “ the Hynes report is very disappointing and the issues raised by Margaret Kennedy are not dealt with in either it or the Mccoy report”. Kathleen Lynch also called for a statutory inquiry. Indeed all these key ministers now in power vociferously over this period called for a statutory inquiry, particularly Minister Alan Shatter.  Once in power the issues were dropped like a stone and no more was said.

This is the only victim group not to be afforded a public statutory inquiry into abuse by a religious congregation. Why?  Because they were intellectually impaired! I call again on these Ministers to do that which they were continually asking for. Institute a full statutory inquiry and give these victims the proper answers, calling to account and uncovering the facts.  There are individuals still alive who need to be brought to justice for failings and/or abuse. The victims and their families still need answers and full understanding of ‘who, why, what’ happened.

I am vindicated as a professional but victims in the Brothers of Charity who were abused or mistreated have never been given full justice.  This remains an appalling discrimination and a broken promise by three opposition TD’s now in power.

It has to be done.