the political hug of a crip!

There's nothing so annoying as the 'Political Hug of a crip'.

Now I use the word 'Crip' in the same way gay people sometimes use 'queer'. It confronts and it is an unashamed expression about your own lived experience / reality. My strap line of who I am is 'The Crip with the Whip'. I don't find the word in any way offensive. i embrace it. i love it.

You need to have been in the disability movement a long time to understand disability language and even so many have different views about it.

But its not language here that worries me - it's HUGS. and HUGS come in all shapes and in all guises.

'The Political Hug' is very pernicious and deceptive.  The hugging politician is predominantly male, white, not disabled and keen to self-promote.  And a really GREAT way to win votes is the 'Crip Hug'.

The Crip Hug takes many forms...I've sort of described them with useful 'titles'  Some hugs are non-contact, others contact. All have the same meaning and purpose. Political gain.

1. The creeper huger = they weasel their way through a crowd of 'normal's' to get near YOU , yes, the one in the wheelchair - you spot them coming - your spine goes tingly in creepiness denial - but they insist /persist, more the chance to get that all important 'pic with a crip' photo  shoot. you've just no idea how valuable this pic is
2. The Bow Huger - these come up to you and bow at the middle - over you, above you, eyes bore into the hair roots of you. its sorta like an umbrella man (or woman) . You have to bend your head back to look up to converse with the 'bow-er'. 
3. The Squeeze Huger - this is defo hands on. Its the arm around the shoulder or waist, drawing you closer. Like Daddy used to when a child. Oh but Daddy it ain't. It's the touchy feeley pose for a Political Hug a crip day! 
4. The Lean -on huger - This is a tired politician - leaning on your wheelchair for support. Its the politician careful not to touch - but does touch - but its not your body but your wheelchair. That's ok - yes?  NO! Its NOT OK. it's never OK.  
5. The hold your hand huger - OK Daddy appears again, holds your hand. Its solidarity - aint it?! I mean holding hands is nice - yeh?  NO! 
6. The Gift Huger - on a cold day Enda Kenny gave a cup of tea - or was it coffee? To Martin Naughton - God Rest his soul, outside Leinster House. Martin of course was a-begging respect, dignity, equality and got.....a cup of coffee ...or was it TAE?  But that is not a hug you might think/say.  Oh but it is. it SO is. 
7. The Pole Huger - this is statuesque. Its that important pose of the politician. Stand beside, behind, but stands tall - beside, behind the crip in a wheelchair. This looks like equality - until you look in the eyes. 
8. The Charity Huger - now this huger engages in all things disability charity. The political hug is Charity support, fund raising, marathon, walk, hospital visit...etc This is a GRAND huger. So look - yeah - isn't He (or She) just GRAND. Saint Politician? 
9. The video-film huger - I'll just film myself at your protest and put it on my blog. OK?

there's lots more...where they come from...and not just politicians either. 

Are there no nice, welcome hugs? 

yes, there are...when a politician hugs you for no other reason other than to shout 'WE WON', 'WE GOT IT' , 'WE DID it' 'WE MADE IT'.   I love the 'WE HUGER'  the 'nothing about us - without us huger. The Social model huger. The rights huger. The REAL huger. The NO political gain huger. The no photo huger...

they are ok 

i'm off to bed. 

The Disabled person of Ireland - The Disabled OLDER person of Ireland

The Disabled person of Ireland

The Disabled Older Person of Ireland

Dr Margaret Kennedy magsken57@gmail.com

Disability activist/campaigner

Are older people disabled or just ‘old’?  This is an important political question.

As an older disabled woman age 66 I find my identity being questioned. When I was below age 65 I was recognized as ‘disabled’, as I’m age 66 I am now, no longer disabled but old. The HSE (Health services) treat me with even less respect. I seem to not be a priority – but actually, I never was.

As someone with a rare neuro-muscular disease rendering me a wheelchair user my HSE supports are now coming from elderly care budgets, ergo I’m ‘old’ and it seems as a disabled person I have no disability rights.

(Mind you I had few disability rights under 65 since disabled people are being hammered right left and centre and this government refuses to do anything about that).

So I guess whether I’m under 65 or over 65 I’m just still ‘snookered’ as a disabled Irish woman.

In March 2018 this government ratified the UN Convention on Rights for Disabled People (UNCRPD) (the last EU country to do so and after many protests by disabled people)    

Yet whilst telling us we now enjoyed disability rights this government refused to sign up to/ratify the ‘optional protocol’ (OP) and deceived us and sold us short of full rights.

Only through that instrument could we complain to the UN if our disability rights were being or had been infringed.

NGO’s can make representation to the UN on our behalf, but since many NGO’s are funded by the HSE – a government agency – few want to ‘rock the boat’ for fear of monetary reprisals. NGO’s are under ‘hock’ to the HSE which consistently infringes human rights of disabled people – and manages to do it with ease and slippery tongues (justifications are classically imaginative). Whilst TD’s and Ministers routinely accept HSE ‘justifications’ for poor or non-existent services.

If NGO’s won’t ‘rock the boat’ for us. TD’s or Ministers ignoring us, we haven’t a hope in hell. I rock the boat – but suffer the consequences. My conscience won’t have it any other way.

The HSE’s own complaints process ‘Your Say-Your Service’ is not independent and if you complain your complaint is investigated by the very HSE managers responsible for your care or is the manager of the professional or department you complain about. How objective is that?  Try it, its wonderful (sic) to experience, a steep learning curve of chicanery.

If you make several complaints you are judged a ‘serial complainant’ or ‘vexatious complainant’ and you might never know you are now thus regarded/designated.

Just as one disabled older woman did not know until a year after being so  described, her sister having discovered on her files (obtained under FOI) this category she’d been adjudged. Thus her valid complaints were deemed - easily - null and void.

Well that was to seriously backfire when an ombudsman examined the case after both sisters put in another complaint!

The HSE had to apologize and address the issues complained about.   But the HSE didn’t like this at all at all…and after 5 years the complainants are still fighting to have the issues addressed. Rather the persons have been subjected to ‘punishment’ so subtle no court of law would dare touch it.

Lets return to the pervasive abuses and infringements of Human Rights of disabled people in Ireland – young and old. How are disabled people of all ages ‘hammered’. Let me give some examples.

Many Autistic and disabled children are receiving shorter school days (if they can get to school at all!), this seems to be ‘permitted’ yet no other non-disabled child has ‘shorter’ school days.

Disabled children and adults needing wheelchairs are waiting anything from 3-12 months for wheelchairs. Meanwhile they languish in beds, hospitals, homes deteriorating in body and emotional/psychological well being and without the human right of ‘freedom of movement’. This is ‘imprisonment’ barely seen as unacceptable let alone any infringement of human rights.

Access to public transport is severely restricted by no accessible buses in the countryside, city buses difficult at the best of times, bus stops not raised to level for easy access, un-staffed DART stations and demands to give 4 hour notice of travel. We have no rights to travel freely at all because of these restrictions. We constantly must plan, plan, plan even to go to GP or shops.  Now we hear Minister Ross announcing ‘disability training centres’ to teach disabled people how to use public transport. Huh? What public transport? Place the onus on us, not the dysfunctional transport system. Nice one Minister Ross. No, I’m not impressed.

There are not enough wheelchair accessible taxi’s leading to stranded wheelchair users waiting, waiting, waiting to go out or go home. Despite the recent transport disability document – nothing much has changed. I still cannot get from A-B easily by taxi. A complaint to the NTA (National Transport Authority) resulted in two well meaning guys visiting me but my taxi provider was not sanctioned for their neglect of my needs.

Disabled people are still largely unemployed, employers just do not give disabled workers a fair ‘crack of the whip’. It’s called discrimination – but it’s difficult to take any legal action. You are just not called for interview. So many disabled people are living in poverty – struggling with a pittance of benefits that do not have any ‘disability needs’ allowances or daily living ‘proofing’ which is far more expensive than one who has no disability or illness.

There is no disability hate crime legislation in Ireland so hatred played out in so many ways can run amok with no sanction. Bullying & public abuse is rife against disabled people in Ireland, but no-one knows. At least the UK has disability hate crime legislation (if nothing else!)  

We disabled people cannot find accessible GP surgeries that have access for wheelchairs, one disabled wheelchair user I know has her GP consultation in a car park. My previous GP had a lift up to her surgery but there were 5 sets of doors between ground floor and surgery (not automatic) I had to negotiate these, alone, with a muscle myopathy. I could not open these doors due to very weak arms. When I publicly wrote about this (but not identifying surgery) I was promptly de-registered by my GP. She dumped me! I had no rights of reply. GP’s can ‘dump’ you (de-register you) without any safeguards for the patients. Nor even right of appeal.

We cannot access dentists of our choice for the same access reasons – I doubt any dentistry can be done in a car park

Recent elections excluded disabled Irish Citizens from voting by councils choosing voting centres which were not wheelchair accessible. Every year disabled people raise these concerns, every year no change. This is 21^st century Ireland for ye.

We can’t even find accessible toilets in public to go shit and pee – how humiliating is that? And if we do the disabled accessible toilets have been used as the store room, with buckets, mops and other paraphernalia lodged therein making using them almost impossible. Such ‘respect’ – we can go in with the mops and buckets.   There are very few ‘changing places’ - rooms, toilets with hoists and benches to allow parents or care givers wash and change disabled people’s incontinence wear. At present disabled people must lie on the often dirty public toilet floor for this assistance. Dignity right out the window.

There was a recent conversation on a disability site about how do you manage the toilet on a long haul flight? Answer, fast, don’t drink, wear ‘nappies’ (even if you don’t normally need to). Do you have to do that? We do.

In 2016 I graduated with a post grad diploma from an Irish University. Turning up for graduation I was ‘parked’ off stage with the equipment/sound/lights technology and buckets and mops. Alone but for the sound and lights technician. Why? Because the auditorium was not wheelchair accessible. I sat in my wheelchair with the buckets. A post grad celebration – not. 2016.

Young disabled people from their 20’s to 50’s are being sent to old person’s nursing homes whether they want to or not – to LIVE. They generally don’t need to be there but with no disabled accessible housing, shortage of home care packages – they must live every day in one room in a nursing home surrounded by those sadly ‘ending their days’ here on earth. Over 1,000 young disabled people live in old people’s homes and no-one blinks an eye. I do. I am outraged. This is both discrimination, oppression and abuse. I call it such. Yes, I do.

Older disabled persons can no longer (generally) access disability centres for respite care (though to be fair I’m still allowed attend the MS Ireland respite care centre in Bushy Park Dublin, but they are poorly funded by government and struggle to take all who need respite - more anon). The respite care grant was abolished where the HSE gave grants so you could find a respite placement yourself. It was cheaper this way but abolished. Respite for older disabled persons has to be in an old person’s ‘end of life’ nursing homes. I know – I’ve just ‘legged’ it out of one such establishment (in wheelchair with my twin, also in wheelchair). It was supposed to be a 14 day respite, we lasted 5 days. I suppose I’m lucky – I did not have to stay there permanently but I was still subjected to the depressing nature of such places. No, I don’t count colouring pictures as ‘art’. Nor anything near fulfilling, enjoyable, or creative. I did that as a 4 year old…I’m no longer age 4. I don’t count a harpist dressed in casual track-suit-like outfit, plucking and singing ‘do, a deer, a female dear…’ from the Sound of Music as a beautiful classical harpist repertoire or agreeable ‘entertainment’. I found it disrespectful. To the harp and to the audience. If you cannot give a wonderful little concert to the old dears, if you cannot put a decent dress on, don’t bother coming.

I was told where to sit for lunch, told I needed to ask permission to make a cup of tea, told I could not have my bedroom door to balcony opened for health and safety reasons even if it was as hot as Hades. It didn’t cross their mind that if I wanted to ‘fly’ off the balcony I only had to go to the ‘library’ where an open balcony was available. The health and safety logic defeated me. Then when I decided to go into the garden a receptionist ran after me to ask if my unit knew I was leaving the building. Seems I needed ‘permission’ for that too. All very controlled, institutional, humiliating. At least this nursing home didn’t explain to me what a t-bag was as the previous one had. Or try to put me to bed at 7pm or quiz me on what day of the week it was.

This is all in stark contrast to the MS Ireland Respite Care Centre in Bushy Park, Dublin, where I attend as a disabled woman (two weeks a year – but the ‘week’ is 5 days) and enjoy thoroughly. I am not regarded there as ‘past my ‘sell-by-date’ or even old – even though I suppose I am. I am greeted as a real person, big hello’s and cheer. They allow you autonomy and are respectful. But as I said the government does not fund….sure we are all decrepit old bats – waste of resources so it is. So MS Ireland can’t do nearly all it wants to do. But what they do do is fine, really fine.

Recent announcements that the government plans to cut home help hours and home care packages will increase our vulnerability and hardship. We will be greatly ‘hammered’. ‘Tough’ the government seems to say to us. Older people will especially be neglected by this, become bed-bound, soil, succumb to bed sores, not eat properly, pick up infections and die sooner than needed – but that seems the plan. Passive euthanasia.

Asking the HSE for your files under the Data protection act /Freedom of information you will discover things hidden from you, but you will also find huge tracts redacted , which you are not ‘allowed’ to see. You know they are hiding something. There is a constructive effort to withhold information from you.

So am I old or disabled? Where is my wee pigeon hole?

I am old – yes – I am disabled – yes, but ultimately I am a citizen of Ireland with allegedly full human rights as a citizen.

But you would not know this here in Ireland, where you can’t get public health care, where community supports are at a rock bottom shambolic state , verging on neglect and abuse, I’d say it was more than ‘verging’ myself, where the HSE make life a veritable hell-hole of misery on a daily basis. You must beg, grovel, plead, as to your difficulties and illness, but rather than hear and believe what the clients are saying, professionals assess ‘down’ to save the HSE money.

Consultants, who used to be allies, writing letters of concern have now become so drained and with a sense of hopelessness, they don’t do this anymore. Quite the opposite, they’ve aligned with the ‘system’. Being so ‘defeated’ they ‘round’ on patients and blame us who appear to ask for more. How dare we?

At my last neuro-muscular visit to my consultant, she said I must…’realize the deficits in HSE resource’s’. Why must I accept misery and suffering at the hands of the HSE? I have real needs not being met, which should be met. I’m NOT accepting neglect of care. Never!

Professionals ‘Assessing down’ to safeguard resources is very common. They know they are doing this but front line workers won’t ‘rock the boat’. No-one will in the HSE – their jobs would be on the line. Why do we need ‘protected disclosure’ legislation – to protect the whistle-blowers?

Right now, I am, my twin too, exhausted.

I didn’t, never expected that just because I developed a rare neuro-muscular disease I’d have to run the gauntlet of not even second class citizenship, but hardly a citizen at all in Ireland. It shocks and appalls me. Nor am I alone.

All disabled people in Ireland have a story, from childhood to grave – disabled people suffer – not necessarily from our illness or disability, rather from being judged ‘not worthy’ of citizenship as a disabled person.

Once ‘disabled’, whether young or old, you’ve been marked. As ‘other’, as a drain on resources, as ‘those ‘useless eaters’. This is never openly said, no=one would dare, but we disabled people know the thinking. Poor resources equal ‘you are not a worthy citizen to support’. We are expensive. Hitler killed us. Remember Hadamar? No, no-one knows of Hadamar…but we do. We know.

Ireland does not outright kill us, but sure as eggs is eggs Ireland makes it almost impossible to live as disabled citizens on an equal footing to non-disabled citizens.

We are ‘killed’ in mind, body, emotions and psychologically on a daily basis. If we say this we are perceived as ‘bitter, chip-on-shoulder’ disabled person, No-one-one rocks the boat and says it as it is. Abuse and neglect is politically sanctioned and we have no way to challenge it.

We disabled people say it as it is. But no-one hears. We simply have no power. traction, ‘voice’ – we must ‘put up and shut-up’!  

I am proud that I do not do that! 

Victims of the HSE - Ireland

Our health service to public patients is collapsing and no-one seems to mind. here are some of the victims of the HSE in recent months.

1. a 75 year old woman falls down the stairs in Cavan the hospital fail to find 7 broken ribs on x-ray. She dies. Family awarded 200,000+ euro compensation.
2. Hundreds of women's cervical smear scans mis-read and cancer missed. Women die and the HSE defend court cases to prevent compensation claims.
3. 60 families of deaf children receive apology from HSE over audiology services in West of Ireland, a further 58 may receive apology also
4. a 66 year old woman was referred to Geriatrician as an emergency (suicidal/despairing/depressed)  on 20th Dec 2018 - she has heard nothing from services.
5. a woman with prior mental health difficulties has tried to register with 15-20 GP's no-one will take her on as a patient
6. a woman in her late 60's is de-registered from GP practice for arguing with receptionists over paying for bloods to be taken. [she was told as a medical card holder she didn't have to pay. the receptionist argued she did. the result SHE was de-registered for alleged 'aggressiveness'. this person lives in poverty. is multiply disabled, wheelchair user; she was merely 'cash desperate'] *NB; to call a person trying to defend themselves or seek the help they need 'aggressive' is now a common HSE practice to divert from HSE failings. Any distress, raised voice is deemed 'aggressive' and an 'incident' form filled in thus categorizing the patient as 'trouble' even 'dangerous'. it's a despicable diversion/ploy. it also could possible be defamation.  
7. another patient was 'de-registered' for posting on facebook her GP practice was not 'disabled accessible' . she had NOT identified the GP or practice.
8. HSE apologise to hundreds of women who have to wait 18 months for smear test results
9. a woman in her late 60's has been told she will be seen in 6-8 weeks over a possible cancer secondary (had cancer in 2012) [I've been told by a GP people over 65 are supposed to be seen within 2 weeks?]
10. HSE apologises for failings in care of a longed for baby who died.
11. HSE apologise for death of woman who had jugular vein torn during routine surgery.
12. a female patient recently disclosed that she was told she'd have to wait to be seen after discovering a breast lump. she went private and was seen immediately. her public health appointment came through 9 months later. her comment as she finished private chemotherapy "if I'd waited I'd be dead by now" Yes she would be! many are. what if you cannot afford to 'go private'? do you just die?
13. the HSE are deeming older people incompetent to care for themselves at home, going to court to take wardship proceedings and removing older people (against their will) to nursing homes so that they do not have to give 'community care' in the person's own home. Judges believe the HSE know best!
14. a female patient with a neuro-muscular disease was told she was having a 'panic attack' in A&E. This turned out to be a vagus nerve/autonomic dysfunction. [but the patient endured several days of verbal abuse by staff for 'just panicking and to 'calm down' until her consultant came back from leave]  She is now terrified of going to A&E.
15. The person relying on public physiotherapy cannot get it.
16. Mobility scooters for disabled people are no longer provided in some areas.
17. Orthopaedic shoes are delayed not given.
18. wheelchairs needed are delayed and sub-standard wheelchairs, often 'second hand' are given.
19. repairs of wheelchairs taking months where disabled people are 'imprisoned' in their own homes waiting.
20. Hydrotherapy not accessible by many needing it
21. learning disabled people and elderly people suffer abuse and harm in homes/nursing homes - see many HIQA reports of substandard abusive care. cf recent Primetime programme where a husband was banned from visiting his wife because he had reported suspicion of abuse of her (bruises) .
22. Patients who request their files under FOI 2014 are finding large tracts 'redacted' without explanation. They are not having full FOI rights under 2014 legislation.
23. over 1,000 young disabled people are languishing in nursing homes - where they shouldn't be, because of no accessible housing for them.

just a few cases in recent months. there are hundreds more with hundreds of civil law suits against the HSE pending in courts. (Figures we are not told about)

Apologies, compensation do not make up for the huge trauma and distress 'Victims of the HSE' are experiencing today.

The public have no idea the perilous state of their public health service. they are not told. they are not told whether or not their Consultant has, in fact, their full qualification to practice as a consultant because many are allowed practice without full certification/qualification. Patients do not have a 'right' to know.

Patients have little recourse to the General Medical Council of Ireland recently accused of not supporting patients.

https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=2ahUKEwjks576jc3gAhUTUhUIHfGhBiUQFjABegQICBAB&url=https%3A%2F%2Fwww.irishtimes.com%2Fnews%2Fhealth%2Fmedical-council-guidelines-not-centred-on-patients-scally-report-1.3627293&usg=AOvVaw1hl7qB5B8kIHhMEUdqqfUg

in one case (taken to the GMC in 2018) the GMC exonerated a Neurologist who in 2017 (after discharging patient) asked one UK hospital "what's this about muscle myopathy...? He had been told in 2014 the patient had muscle myopathy found after muscle biopsy (that is the removal of a piece of muscle for detailed specialist examination) which had been undertaken in another UK hospital, (he asked the wrong hospital!) yet in 2017 he still had not registered this finding. He had received the full UK hospital's findings in 2014.  other failings were also ignored by GMC Ireland.

No case against him was found - he remains in practice.

There is no-where to go if the HSE fails you and your care and treatment fails.

'Your Say-Your Service' the complaints process, is as useful as a chocolate teapot. With HSE senior managers 'investigating' their own staff. this is patently not independent or even transparent. Self-regulation does not work. Collusion and cover up potential is seriously underestimated. is this deliberate? to allow in house investigations to prevent the full truth emerging. to deny patients their full rights.

Even complaints upheld result in very little action even if great harm has occurred. two patients had their complaints about being called 'serial complainers' upheld. recommendations were made 4 years ago by the investigator ombudsman yet have still not been implemented fully.

We the people of Ireland, Sick, Disabled, older are 'Victims of the HSE' and we are denied full justice, a health service that should have 21st Century standards - not 18C standards!

and now its going to get worse as the health funds are diverted to building an extravagant over-blown, and fraudulently expensive children's hospital not in the least necessary for a country with only approx. a 4 million population.

Who is running this 'show' that is called 'health care'?

Victims of the HSE are angry, feel betrayed and are frightened about their care.

Just WHO is caring for public patients in Ireland?

 

The Tea Bag did it!

The Tea Bag did it!  

 

There's no doubt about it the NEW nursing home we were given for two week respite care was spanking clean, new and highly clinical. like an American private Home.

Nurses were mostly Asian, and were kind. (though being deaf it was very difficult to understand their English) there were some Irish care workers too. again kind. No arguments about kindness. they were all fully trying hard.

When 'admitted' a flock of 4 of 'em circled around me welcoming, in the entrance lobby,  - bowing down to eye level and rather patronisingly , in voices structured for the 'dim witted' (sorry about words I'm expressing something here)  said hello, petting me on the shoulder and rubbing my back as if I was some poor waif and stray needing comfort.  I immediately felt demeaned. I wanted to scream "DON'T PET ME"

this 'tone'/approach immediately got my hackles up. I felt like screaming "I've a bloody PhD you know". you'd think I had completely lost me marbles. It was somehow assumed I was 'deficient' upstairs! (Of course you must be if you're a wheelchair user, age 66 and entering a nursing home - you poor bloody sod)

The nursing home 'lobby' was like a hotel. but 0lder people were sitting watching TV and an activities board told me that every day something was 'on'. It looked on the face of it - nice.

The activities guy was introduced to me. a heavily tattooed, He was a nice guy. (Who later agreed we were not suited to this place)

Nurses carried my stuff to my room and staff nurse on duty was with me. I took one look at the bed and thought  'crikey'. small , narrow, and no grab rails. I had visions of falling out. I said; "I need grab rails to help me turn over". none could be supplied. the nurses said there weren't any and no-one to fix them on. so I ended up putting commode one side of my bed and a chair the other so I had 'rails' to grab to enable me turn over. Whether 'heath and safety' would agree with that is questionable. but I needed something to help me turn over. later on going to bed at 12mni had to put my own 'slippy sheet' I had brought on the bed. a difficult task as I now need crutches to even stand up.

what also distressed me was the stripy bedclothes. I thought it reminiscent of prison supply. (I hasten to add I don't know what prison supply looks like - but it looked 'prison-like'. )

I discovered later beds were lowered to floor level for safety instead of rails these days. indeed I saw them so lowered in other rooms..  

looking out my window I saw a wall. a wall. no view whatsoever. a wall.

The heat was suffocating. noticeable. alarming. I was going to die here I thought. I could barely breathe. not healthy at all.

my medication was emptied onto my drawers top and staff nurse said she'd come and take a list of what I'm taking, when etc. she spotted the butrans patches (5mg and 10mg Ones) and picking them up declared she'd have to lock them away as they were 'controlled' drugs (morphine). fair enough. but in the whole 48 hrs there they were NOT taken off to be locked away. nor did anyone come to make any medication list, or discuss them with me, though that night the care staff, a man, most normal individual there was,  told me, again, he'd make a list. he didn't.

there was no information leaflet in bedroom, a phone was there but no advice on number to ring for help. no fire safety advice was given. what to do if fire alarm went off etc.

anyone could have come into my room, a wandering patient for example. and helped themselves to any or all of my medication now heaped up on the set of drawers.  

clothing stuff was packed away and a carer showed us around. so we got to know where the nurses station was, never anyone there. where dinning room was, water dispensers, lounges etc.

a nurse came to talk to us about food preferences and filling out a form said "can you remember your date of birth?"

This grated enormously and I was again feeling "get me outta here". yes, I DO 'remember' my DOB. I do.  Yes, I DO!

lunch was then on offer and we got to dinning room where chairs/tables were moved to allow us access. Ann & I were given our own table.TG.

all around sat frail, gloomy, morose, 80-100 year olds; many  with dementia. we were told that was the age range.

Food was superb. very high standards indeed. chef was 'normal' in demeanour and great craic.

nurses/care workers, continued to be kind but extremely 'suggery', patronizing and too 'touchy-feely' altogether. I was 'petted' at every communication event. shoulders, arms, back, knee. UGH UGH

"Get me out of here"

It was awkward to say the least; as you knew they meant well, but to say "Please don't 'pet' me" might sound offensive.

I'd had a word with the activities guy and asked him if there was access to a computer as I'd brought my memoirs stuff to look at it and perhaps spend two weeks sorting it out. NO computer access. forget THAT activity Margaret!

Ann discovered there was NO art space - she had to set up a corner in the lounge to paint.

Lunch over and there was 'art & crafts' on. so this was in dinning room. we went to suss this out and were horrified. older residents were falling asleep in chairs.

After lunch, most older people DO fall asleep and arguably should have been on their beds for a nap. a nurse was to tell Ann the residents were thus so because still suffering affects of previous nights sleeping pills. What? at 3pm next day? HIQA might want to know that! HIQA might want to know about other stuff too.

Some were painting in large alphabet letters. one was stabbing a page with a stencil brush. Ye Gods and THAT was called 'stimulation'.

We 'legged' it, distressed and upset.

 

enough to depress a saint. certainly hugely depressing to Ann who has a diploma with distinction from the Crawford College of Art Cork in how to work through art with elderly and disabled people to 'empower them'. and who herself, had done brilliant work with older people in nursing homes. THIS was far from her standards. it was fairly insulting. Ann said "My God, we are going backwards - not forwards".

back to room to watch TV. nothing else to do.

no library, no board games, craft, art room, no nothing.

There did not seem to be a difference made between elderly -'having end of life care' and 'disabled active - resting but NOT near going out'.

wasn't there a comedy on TV called 'waiting for God - where Stephanie Coles - a rebellious 'old person' caused havoc in the old person's home Demanding her power, control and autonomy. I felt like doing likewise.

 

we never got any induction to the place. no-one came to 'book us in' so to speak. no-one came to ask about us, our needs, our capabilities, our drugs, our ability to walk, wash, dress, our interests, what we wanted to do for two weeks, etc.

Indeed according to Ann's GP notes Ann was 'paralysed'. so if they went by that they got a very different picture. I don't think they had any medical notes on me.

Yes, our temperature (thermometer stuck under our arm old fashioned like) blood pressure were taken and food preferences form filled out - that's all.

In our room, on our bed, we could not reach the light switches. you had to get out, turn on or off, get back in to bed. a risk if ever there was one.

though there was an emergency call bell beside our bed and in bathrooms. there appeared none in the lounges so if we'd fallen there god only knows what we were to do. we could get hold of no staff from the lounge area.

there was never anyone at the nurses station, and very few residents being newly opened. the lounge was continually empty.

we explored and found the garden. a nice space surrounded by high 15ft 'Berlin walls'. no view.

in fact the feel was you were hermeneutically sealed from the outside world. with a road one side, the 'berlin wall' the other and the Health centre to the side.  

that evening we escaped to the empty lounge to watch TV.

at around 7pm a nurse came, introduced herself, and asked us if we knew what tomorrow was? "I'll give you a clue - today is the 31st" -

we looked at each other and said "HAPPY NEW YEAR NURSE" , loudly.

and silently screamed "get us outta here"

she asked if we wanted to go to bed - 7pm - "er, no" we said  - "what - its 7pm"! . She was asking a very genuine question.

when the night staff came, a man, all normal and cheery I said "I want to state from the outset I have a full set of marbles" tapping my head. He laughed.

 

he got us tea.

we went to bed at 11.30 and I rang the new year in with giving myself an enema, and sitting on a commode shitting as the fireworks went off somewhere in distant town.

 

 

 

I groaned at this sheer ignominy and 'forced' dependency from the HSE 'powers that be'. THEY, no doubt were not doing likewise!  

Slept from 12.30 to 5am when I woke in a pool of sweat, hot as hell, dripping, rang the bell and asked for cold water and toast. (last meal was 4.30pm previous evening. I was starving. and very, very, hot.)

I went to bathroom , got a dripping cold flannel and doused myself to cool down. (Ann said she poured her water decanter down herself)

We both had breakfast in the lounge. separate from the older residents. couldn't bear to be watching older people in last stages of life when we were FIGHTING to still live life to the full.

it was emotional/psychological cruelty to put us in here at all. it was a complete denial of all we'd fought for. Independent living, fighting to live life to the full.

Yes we agreed to come here. based on "oh its a lovely NEW nursing home, just built, very few residents".

we a) wanted to show willing b) we were exhausted and decided it sounded like it may be more progressive - being NEW.

Jazus, it was a warehouse for the last days.

older demented people holding teddy bears. like my mother did who had Alzheimer's and ended up in such a place herself. I didn't like them then, I still don't like them.

I skipped a beat when I agreed to come here. never again.

was the HSE determined to psychologically 'break us'. we felt manipulated, hoodwinked, deceived. dis-honoured. dis-respected.

the next morning we had breakfast in the lounge. the nurse brought the tea and holding up a tea bag; waving it in front of our noses, declared ; "This is the tea bag"

"Get us outta here"

the tea bag did it.

after lunch - in the lounge we discussed how we were destined to spend two weeks in this lounge, with daily 'tea bag' 'petting', 'do you remember your date of birth', 'do you want to go to bed - at 7pm' and 'what day is tomorrow?" carry on that would have us in John of God quicker than you can say "get me outta here".

we made the decision "we are getting outta here - NOW"

 

we packed up and left. In the car the nurse brought our self-discharge forms to sign.

There  the words "pet & My Dear" were used. recently banned by the HSE . Ah well, policy is one thing, delivery another. "isn't that so Pet?"

The tea bag remains a powerful reminder.

keep hold of your own power, control, independence, autonomy, self-respect and dignity.

From here on 'TEA-BAG's' win every time.

 

Take-Over of my IPC

Dr Margaret Kennedy

The year 2018 is nearly over , 2019 just around the corner.

We ponder the good and the bad at this time - well I do. And I've considered more than ever my perilous state of health. Simply because with a neuro-muscular degenerative disease you are daily reminded of 'disintegration'. The downhill slope.

Being disabled is tricky enough in a world of discrimination and abuse towards us. But being disabled and becoming more so daily brings a certain underlying dread of demise and inability - dependency and death.

For now, not only are we disabled we are 'taken-over'.  Others decide what we feel, what we can/cannot do, what we must do, and generally 'take-over'.

 I fight for my IPC

It's as if my autonomy has the disease. My power & control 'infected' , 'damaged' , 'lost' by my disease. and 'take-over' is automatic, sensible, necessary to divest me of my independence, power, control, decision making. For most around me this belief is almost universal. I'm not the only one divested of IPC (Independence, Power, Control). All disabled people, all older people, all vulnerable people by virtue of their 'state' are denied IPC.

Twins with same disease

Both resisting 'Take-Over'

Lets look closer at IPC 'Take-Over'.

Doctor's/Consultants:  a conversation.

Dr: How are you?
MK: I'm much worse
Dr: let me examine you
MK (gets onto plinth)
Dr:  (says nothing)
MK: describes difficulties
Dr: takes notes, says nothing.

end of consultation. This 'Take-Over' is subtle.  A complete ignoring of my reality. I'm still breathing, still, walking - a bit - so all is well. My sense of 'owning' my disease, facing reality is shaken by the utter disregard of this Consultant. I'm stressing my downhill slope, I'm holding on to IPC needing his support to do so but he's just using 10 minutes allocated to chart my present situation. we do not meet on any level. I wheel out of his room feeling my IPC has slipped down a further notch as I could not make my reality heard. He's not the slightest interested in my IPC but rather my brain neurons. and even that is debatable.

I've since left this consultant after 6 years of horrendous neurological 'care' - the new neurologist is not much better and I now realise 'care' is not on offer in Ireland. You are but a body and have no IPC to change THAT reality. Your humanity; IPC is totally disregarded. It's not a medical issue.

Degeneration is all I'm 'allowed'.

 

Not allowed in ?

Another Consultation: Nurse assessment of Needs

Nurse: can you wash yourself?
MK: yes & no , describe what I can, cannot do
Nurse: Can you dress yourself?
MK: yes & no - describe the bits I can do, cannot do
Nurse: can you cook?
MK: depends on what meal I'm trying to prepare

She grades scores of what I can/cannot do. however she DECIDES. She decides my competency. my needs, my abilities. all based on my body. there are no social, emotional, psychological or IPC questions. They don't count in the scheme of my 'needs'.

When I read her report I understand I've been graded 'down' so as to deny funding for greater services. it's deliberate. It's an exercise in her Power & Control, not mine. For I've really no say in the scoring. and it's the scoring where she holds PC and uses it. If I say I cannot put on my wheelchair mac in the rain outdoors and demonstrate, it is not scored for her scoring only relates to in house ability. She's not interested in my IPC or how to improve it. all she's interested in is that I'm clean, dressed, eating. I'm only a body to be kept alive. no more than that.

The HSE - Health Service executive.

This is the community service designed to support people like me in Ireland. You tell them your hair colour is brown and they'll say it's not - it's blond!  Daily games of IPC. There's no such thing as 'working together'. it just does not exist. They tell you the level of IPC you are allowed.

They deliberately do not SEE my muscle myopathy, the weakness, the fatigue therefore it does not exist. I cannot tell them - I've tried. Their understanding of me is purely based on economics. budgets, saving the coffers. So I must NOT be judged as a person with a degenerative disease at all. Good God, that is NOT policy at all.

 

IPC is not a plank of HSE 'care'. They don't want it to be. it cannot be, because they have to control budgets and giving me IPC would be too costly. So every effort is made to not hear me, deny my disease, downplay my needs. Deny services or access to services. That's policy.

 

Yes A farce

Family

Being the youngest of a gaggle of older siblings is tough shit! I'm 66, next up is 73, then , 76, then 77. Now I'm not expecting care from older siblings. They are all ill in some way. mostly heart disease. No, they cannot be my 'carer's'. but they do decide my IPC. Oh yes, they do. They decide I should be in a nursing home, or supported living, or residential care. My wish for IPC is seen as stupid, not sensible. if I complain I need more support the stock response is "you need to be in a nursing home".

not only do they decide how my IPC needs to be 'taken-over' by someone else, they decide how I do things. "don't bring your wheelchair or PA (personal assistant) to the party" was a recent IPC 'take-over'.

 

there was such a furore over my choice to do this I was harangued by all siblings and so capitulated. I was told to 'apologise' to the sibling I had argued with. (over my dead body).  I was even told that sibling had NOT said this. I have it by text on my phone. evidence of that particular IPC take-over.

So as I leave 2018 I've learned what I will fight for in 2019. my own IPC.

This is my sole fight. IPC. No-one will tell me what level my disability is at. no-one will tell me where I will live. no-one will tell me how I live.

I will define who I am now.
I will hold on to MY IPC.
no non-disabled person, in whatever capacity, will decide the quality of my life.
I will not be 'reduced',
forced to acquiesce to ableist agendas.


I'm sick of the 'Take-Over', Tired of 'Take-Over'. raging at ableism, discrimination, annihilation, denial of my IPC.

So roll on 2019...IPC is my Goal. I will win.

 

Are they really listening?

PA demonstration 

 

Staying Alive depends on your Status in Ireland

More and more I realise with horror how the health service in Ireland operates.

https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=13&cad=rja&uact=8&ved=2ahUKEwia8Pz9kfndAhUrLsAKHbgABToQFjAMegQIAhAB&url=https%3A%2F%2Fmagill.ie%2Farchive%2Fhealth-service-catalogue-crises-and-failures&usg=AOvVaw3ZkJk5yqDQm1AYpjfT9_LF

It's not based on "You need help -you'll get it", but rather "are you insured"? because if you are not, you are not going to be diagnosed, or treated anyway soon.

Add to that mix, if you are a woman - misogyny and paternalism

Add to that your position as a 'useless eater'.  Hitler's phrase for those deemed to drain the state of resources, and were killed. Ill, disabled people, older people were discarded. Made to wear a black triangle. https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=8&cad=rja&uact=8&ved=2ahUKEwiz67Hgg_ndAhVXOMAKHerOATIQFjAHegQIBxAB&url=https%3A%2F%2Fwww.theholocaustexplained.org%2Flife-in-nazi-occupied-europe%2Fnon-jewish-minorities%2Fdisabled%2F&usg=AOvVaw0yRVssJ_0VdWG2PvrMZSLc

Today the 'discarding' is more subtle - but it happens. What I notice in Ireland is the withdrawing of treatment if you are a woman, deemed too 'pushy', too demanding, if you are disabled, old or 'not worth it.

Why else am I stopped from getting a diagnosis of my rare disease?

Why else am I not able to access treatments such as physiotherapy, hydrotherapy, rehabilitation, neurology, overseas specialist help as a rare disease patient.

Is it because I'm about to pass my 66th birthday? I am a 'useless eater'. I'm not economically 'viable' , I am not 'worth it'.

yes it is. definitely, yes it is.

I know it, I feel it.

So WHO exactly gets Health Care in Ireland?

The insured (depending on your policy), well off, the rich.

I am insured. I'm not well off and have to make a judgement call as to whether I'll use my insurance. For my policy does not cover all costs; no-where near it. So I can't pay out too often. A consultant fee of 250-350euro must be paid there and then and only a fraction of that is refunded by my policy (not a brilliant one - though good for inpatient care)

But there's no doubt about it being insured brings some privilege and health care.

Take for example my ability to get a rheumatology appointment within days (albeit I was lucky there was a cancellation) because I have health insurance.  Had I relied on the public health system I'd have had to wait possibly years. no kidding - years!

Take for example my ability to have cataract operations within weeks whereas public patients can wait up to 7 years and risk blindness in the process.

Take for example my ability to get a CT /MRI scan within weeks whilst public patients must wait years.

Take for example my opportunity to get a hip or knee replacement within weeks whereas I'd have to about 7 years for public care. A local woman in Greystones waited that long for her public hip replacement and was in excruciating agony all those years.

I know that because I can just about pay my annual insurance encroaching 3,000euro per year, I get preferential treatment. I jump queues. I get care.
I am privileged.

How does that make me feel?

Guilty
Ashamed
Angry
so, so angry...
it offends me deeply ... but my fear about my disease affects my moral stance - I know this, and hate it.

Why should this happen? Where is the morality of leaving public patients suffering and languishing on 'lists' for years?

I go 'private' rarely, but when I do I know I'm privileged. I know it offends deeply my inner heart and soul. I roll through private hospitals, am treated with respect and politeness long gone in the public sector.

The difference in Consultants attitude is significant. (though if you're a rude consultant you don't change your spots that easily - I know - there are many atrocious Private consultants too - I've met them).

Irish consultants/GP's attitudes were highlighted in the Scally report on the cervical screening debacle as 'misogynist & paternalistic'. We women were idiots, ARE idiots.

Take this dialogue I had with my GP (a woman) recently. I had seen the rheumatologist and was reporting back:

MK: The rheumatologist says I can continue to take the Mobic (anti-inflammatory medication which had been stopped due to a suspected 'bleed')

GP: I'll wait to get the consultants letter confirming that.

ergo....you might have;

a) got that wrong
b) be trying to pull a fast one to get medication or
c) you can't tell me what to prescribe - only a consultant can,

forget the fact that left me in excruciating arthritic pain for weeks. Forget the fact I'm an intelligent patient. I have no voice. none whatsoever. I'm not to be trusted.

https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=2ahUKEwiZhIj5j_ndAhUkB8AKHdKnAnoQFjAAegQICRAB&url=https%3A%2F%2Fwww.irishexaminer.com%2Fbreakingnews%2Fireland%2Finstitutional-misogyny-dr-scally-says-culture-of-paternalism-left-221-women-in-dark-on-smears-868653.html&usg=AOvVaw3qEeB0xqUlK8mBJbLV8jwx

But largely the private receptionists, nurses and doctors treat you with a level of consideration not seen in the public sector.  Where there are huge queues, general bedlam, and harassed staff - overwhelmed with too many patients and not enough staff or resources.

Seeing a Consultant in the public sector can seem like you are entering the gladiatorial amphitheatre where you know you haven't a hope in hell of surviving!


 

or made to feel that somehow you are very lucky indeed to have the appointment, after-all, you are the 'useless eater'. how dare you take up scarce resources. You are expected to accept the lowest common denominator of care/treatment.

you are expected to 'put up' with bad consultants attitudes, rudeness and dismissiveness.

you are not allowed a voice.

But even if you have a private insurance Consultants or GP's can bar you accessing the private sector.   Asking for a referral letter to a private consultant, facility, or treatment abroad you still must run the gauntlet of whether your doctor will agree to that! 

You can't just pick up the phone and make a private appointment, scan, or arrange overseas treatment. No , you do not have 'control' or 'power' even in the private sector. (Unless of course you are a famous person).

and here is the thing - 'power and control' as patients. we have none. NADA, zilch, nuffin!

forget 'working together'
forget 'medic/patient jointly addressing the diagnostic /treatment endeavour'
forget your status as an intelligent patient who knows more about your disease than your consultant
forget HSE complaints processes
forget hospitals complaint processes
forget the Irish Medical council - https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&cad=rja&uact=8&ved=2ahUKEwiZhIj5j_ndAhUkB8AKHdKnAnoQFjACegQIBxAB&url=https%3A%2F%2Fwww.irishtimes.com%2Fnews%2Fhealth%2Fmedical-council-guidelines-not-centred-on-patients-scally-report-1.3627293&usg=AOvVaw1hl7qB5B8kIHhMEUdqqfUg

you are 'nothing' either in the public or private sector when faced with a consultant/GP. (Particularly if you are a woman with male consultants or GP).  you are merely a 'patient'. which holds no status in the medical field. none whatsoever.

Public patients fare worse - no doubt about it but you can't guarantee any better response in the private sector. I've met three private consultants, two ENT , one neurology who all were appalling.

So my blog is about three glaring issues in health care that need urgent addressing:

1. 'Power & Control' - who has it?
2. Rudeness, arrogance, autocracy and vile manner of some Consultants & GP's (too many)
3. Disparity between public & private access to care and the discrimination, injustice and unfairness of that.

All is far from well in the Irish health care system.

Patients need to fight for their health care like never before and the 'system' is weighed hugely against you.

Yes - health care IS a Human Rights Issue - Ireland breaches our Human Rights in Health care every day - there's no accountability, no sanctions, no change.

We are abandoned by our politicians.
we are betrayed....

Pope Francis visits Ireland - I won't be there

I won't be there...

The pope's coming visit prompts me to write. I learn that his visit is to cost close to 32m euro, with the state up-fronting 20m. That's US, by the way, Tax payers money.

We have a housing crises, a heath service collapsing and we are spending millions on a wee visit from the Pope,

I am disabled with a neuromuscular degenerative disease. essentially I am 'dying'.

My life is limited now in years. the HSE apparently cannot afford to get me a special bed to sleep in.

Cannot afford to give me a decent 'support in the home' package (I'm severely struggling),

Cannot afford to give me physiotherapy/hydrotherapy that would relieve morphine needed severe, agonising pain.

The HSE Cannot do anything but call me (and twin - same disease) 'serial complainers' and say no to all basic services.

I am to die unsupported. Rejected. As all sick, disabled and older people are.

I've experienced that before...

This Pope will eat up our money - desperately needed by sick, older, disabled Irish Citizens.

32million euro would heal so many who need care and love and support. yet we spend it on a sickening jamboree in the Phoenix park.  

I have worked for years supporting clergy sexual abuse survivors. My 'record' with the Church and Pope

picture: Myself, far left front. shortly before I 'broke free' of cordon and 'legged it to St Peters. Many protesters were Italian Deaf people. sexually abused in a Deaf school in Verona.

has been volatile to say the least. I was once 'detained' in St Peters Square by Italian police along with Brendan Butler of 'We are Church' for several hours - our 'crime' ? Just being in St Peters square as we 'broke free' of a cordon corralling survivors of abuse, to stop us going into St Peters Square,  and 'legged' it (Brendan pushing my wheelchair with me shouting 'Go, go, go' . (They did not think a cripple would be a 'protester'!)  to St Peters, whereupon we were pounced on. Passports taken. Waited hours for their return, surrounded by armed police in freezing cold. I was in my wheelchair.

it caused a diplomatic incident with the Irish embassy involved. It was written up in the Irish Times:

https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&cad=rja&uact=8&ved=2ahUKEwiivLDMk_HcAhWhxIUKHTO8AA4QFjABegQICBAB&url=https%3A%2F%2Fwww.irishtimes.com%2Fnews%2Firish-abuse-protesters-complain-at-treatment-by-vatican-police-1.671250&usg=AOvVaw37D5bNt7UtzO3pTnLdpnFi

The vigil in Rome : survivors of clergy sexual abuse.

When, in 2010, Pope Benedict visited London, UK, I was there. I lived in London for over 40 years (now live in Ireland) and had founded a clergy sexual abuse group MACSAS. It's still running and supports clergy sexual abuse survivors of all denominations.

During the Pope's visit we held conferences and press meetings. we demonstrated.

Snap USA & MACSAS UK demonstrate outside Westminster Cathedral London. self wheelchair

 

We shared our stories and the press heard.
 

me sharing the victims of clergy abuse stories - London 2010 my hand rests lovingly on the Survivors book.

We also asked to meet Pope Benedict to hand over a book of survivors stories, beautifully made and  bound by a Catholic abuse survivor.
 

The survivors book of evidence. The ribbons we wore. 'Truth, Accountability, Justice'

We asked the  Archbishop of London; Vincent Nichols, to facilitate us handing it over as our 'gift'. Our voice, our pain and suffering.

 He refused to allow us meet the Pope personally, but agreed to give the book to the Pope himself.

We declined. If we were to be prevented from handing the book over ourselves no-one else would.

We asked the Papal Nuncio to facilitate the meeting, he refused. We asked the Catholic Church's 'safeguarding' committee to facilitate the meeting...refused.

We were banned utterly and completely from meeting Pope Benedict. We were not welcome. the rebuff/rejection was keenly felt. No bridging of any harm was made. No acceptance, no love... 

In the event,  some other survivors actually did meet the Pope? Carefully hand picked 'safe' victims, carefully 'stage-managed'.  They did not come from our very vocal MACSAS organisation, no...only the shy, powerless, 'nice' survivors who would 'keep the secret' of the meeting and say the right thing afterwards! Survivors who would not 'rock the boat'.

We, vocal survivors were viewed as 'unhealed', 'disturbed', 'unforgiving', 'unloving' (of the Church). I believe we were authentic Christians. Following Jesus who rid the temples of the money-changers. Jesus was all for Justice. Our call was a Jesus call. No less.

We would not give up, we decided to bring the Survivors book to Westminster Abbey, to stand at the railings and try to give it to Benedict as he passed. It was a slim chance! Well, no, it probably was a hopeless chance - but we tried.

Arriving at the barriers, I, in my wheelchair was abused and accosted by young (and not so young) rabid Catholic 'opus dei' types, dressed in 'I love the Pope' t-shirts, and black leather jackets, who, on finding out what I was trying to do, proceeded to physically cut me off from the front space I had found, by forcibly getting in front of me to block me from the barriers.

When I protested and was helped to stand on my wheelchair (unsuccessfully - rather dangerous, I have to say, but I was a messenger, I was certainly not giving up) I was threatened by a police man with arrest. I sat down!

These 'Catholics' screamed at me "the pope has apologised, what more do you want" . As if 'apology' would heal the pain, suffering. As if 'apology' would be all that was needed.

For us we wanted the 'Truth' to be exposed, files hidden - opened - priests hidden brought to 'Justice'. We wanted 'Accountability'. nothing less.

'Apology' is mere window dressing. meaningless without action, change and survivors honoured, believed, supported.  

These angry Catholic's entrenched, with almost cult-like devotion was scary to behold. The Pope was 'God'. They adored him.

I was to them, an anti-Christ, an evil to be shunted into obscurity. I confess that the brutality of their 'Catholicism' rendered me crying and terrified. I was 'rescued by a radio crew who had wanted to interview me and I gave my interview in tears.

I was truly shaken. I'd never experienced such violence from Christians. I could not understand it. Did not expect it.

An iconic photograph was taken of me holding 'The Book' up in the air , I decided to 'offer the book to God' symbolically. The Pope was never going to 'accept it'.

 

The man beside me (first pic) was terrifying! Leather clad 'stazi Catholics in front of me! Scary.

'

 

Then I gave the book a hug and 'told' the victims of clergy sexual abuse I honoured them if the Church did not!

I was shocked by the 'lack of love'. Shocked by the rejection of all those victims of clergy sexual abuse who'd contributed to the book. There was even a video inside, of a Deaf Man signing. He'd been sexually abused by the Catholic chaplain at his deaf school in Boston Spa.  

I was distraught I had failed to hand it over . I had failed to get their voices heard.

After the radio interview, a male survivor who had been handing out leaflets elsewhere came up to me and declared "Margaret, People spat at us, screamed at us, attacked us, told us to go away".

HE was visibly shaking too. A most gentle person, brutally abused by clergy in Australia, as a child - he didn't deserve this.

 

He is custodian now of the book. In his 70's, he is a very ill man. But he guards the book - with deep love. 

 

We left. We saw the Pope, we saw the adulation, the pomp, the celebrations. We had nothing to celebrate.

 

we had been attacked, vilified, spat upon, shoved away from the railings,  rejected by Our Church (yes we were Catholics) we were 'persona non gratia'

We were rejected. It was made clear to us that OUR VOICE was not welcome. we disturbed the Christian charade!

So what of Dublin, in the Phoenix Park? Will I be there? No.

Why should I be there? I left the Catholic Church years ago (but not God/Jesus - I'm a committed Christian - follower of Jesus),

I left over child sexual abuse by clergy, and over clergy who exploit sexually women - adults - who sought pastoral care, spiritual direction and help and were then molested. The Church called it an 'affair'. The women called it rape, abuse, exploitation.

 

Many were nuns. Cowed, bowed, bleeding in their habits of shame.

Abuse of adult women by clergy is not nearly uncovered, spoken about, acknowledged but it was my doctoral research topic.

65 women told me their experiences (I was in touch with 200) - what I heard was evil personified wearing the clerical collar. Protected by the Church.

 

My thesis was entitled: 'The Well from Which we drink is poisoned'.

 

I left the Church where we were not welcome. I left the Church as Bishop after Bishop was found to have 'covered up', allowed sex offender clergy new pastures, new ministries, where no-one would find out who they actually were. Left children and women at the mercy of sexual predators. They did not care about them. only their priests.

I left after I discovered Africa was the church's dumping ground for their sex offender priests. A racist decision, to destroy also the black children of God.

 

I left over the torture and misery created by both clergy sexual abuse and the Church's disgraceful responses.  

 

I cannot 'belong' to a church that betrays those they profess to love and support. This is NOT the 'Church of Jesus'.

I cannot be part of evil. I cannot be a hypocrite.

 

I love too much - survivors of clergy sexual abuse, both child victims and adult victims and God.

 

Whatever their nationality, whatever their colour, whatever their position. Those poor, male, female, British, Irish, African, Deaf , disabled, sick, all victims of this evil.  I care deeply for them.

 

I find this visit to Ireland by Pope Francis stirs up in me the deep horror I felt at the railings of Westminster, where I was attacked by allegedly 'devout Catholics'.

 

It is that cult-like devotion I fear. Where tacky coins, plates, mugs, ribbons, flags and 32million Euro will mark a Pope's visit but ignore victims destroyed by the collared ones.

 

Where state and church which Ignores the perilous position of Irish homelessness and dire health services and squander 31m euro on a 'party in the park',  A 'party' the Pope can well afford.

I am not going to be part of that again. Its not the Jesus I know.

I won't be there.
--