Wednesday, December 27, 2017

New Year 2018 is coming...and I'm going...

I want to keep this simple. very simple. its really not hard at all.

I want to LIVE.

I am GOING....towards LIVING...

 
I may NOT go THIS far!
 
 
 
But I'll do THIS again!



So what is this LIVING?   Not 'live' as in 'be alive', not dead sort of thing. No, LIVE as in experiencing the fullness, vibrancy, joys, beauties, mysteries of life ...before I die.

I've spent 8 years or more imprisoned by Ireland. Returning home in 2010 I landed in quicksand. that sucked me down, near destroyed me and annihilated ten years of LIVING.

It began the day I 'met' the HSE . Our alleged modern day 'health service'. give me a break! 

  • 'Modern'; NO it definitely is NOT, way behind most European countries.
  • 'Health' - You are joking, it's NOT health they are after, its your death in every sense, you are wasting the money 'those who get up in the morning early' should be getting! (according to our esteemed right wing FG leader Leo Varadkar.  
  • 'Service' - what service? it's broke - completely broke - and the 'power and control' they exert over sick, disabled poorer public patients no private patient has to endure! They would not TOLERATE the stuff public patients endure from hospital doctors (some - not all) or HSE in the community.
So after ten years I'm going to 'take charge'. not that I haven't tried to...its awfully difficult standing knee deep in a HSE CEMENT or Quicksand. (Well its usually one or the other!)

But here's my message to Mr G of the HSE.

  1. I deserve to LIVE life in all its fullness.
  2. I deserve respect and consideration
  3. NO-ONE, least of all a HSE official tells me how to 'work in partnership' with the HSE who don't actually know the meaning of that word.
  4. No-one will have 'Power and Control' over me - least of all the HSE
  5. I will be free in 2018.
  6. I will prevail - I will NOT be sunk. I will NOT bow down. I will NOT have my LIVING reduced to nothing but incontinent pads, Zimmer frames or 'Home Care Packages'.
  7. I will LIVE a fully INDEPENDENT life.
This is my goal. To LIVE fully for ten years before I die...

No more 'Heavy' stuff...
 
Perhaps NOT boxing!
 
But I will go to beautiful places - and remember my beloved Saffi and think of friends, of nice things, of PEACE, love and happiness
 
I feel those LIVING years fading and I must catch them. I must grab them.
I must drink in the BEAUTY around me


I must MAKE it HAPPEN

I hope its not too late.

I will LIVE before I die.

But being Margaret still; I will not give up completely on 'Justice Making' ,I will still...

speak out /not to be Silent
Because
 

But in more 'Balance'
 
I do need to find my Peace & Rest & Beauty and LIVE
 

"2018 ...I'm GOING...my way...


Thursday, November 2, 2017

"Sssshhhh it's private - don't talk about that"

what are you keeping 'private' ?

What issues are you ashamed to talk about?

What part of your body is an area not discussed?

In child protection we tell children those parts of our body covered by your swimsuit is 'private' , no-one has any right to touch you there. tell your mummy or daddy, or someone you trust, if they do. (What if mummy or daddy or trusted person touches you in your 'private parts'?)

I'm not going to discuss child protection here. I want to talk about body shame.  When we relegate part of our body as 'private' do we also build 'body shame'.

The 'private' body parts under our swimsuits have become those parts of our body we don't talk about. It leads to all sorts of dangers. Death being the ultimate price of 'privacy' or alleged 'decency'.

 Men who won't talk about scrotums, penis, prostates, fear a doctor seeing an alleged small penis, big scrotum or digital palpation of the prostate. Fearing having an erection during examination, or God forbid an ejaculation "UGH no" - recoiling in shame - stay away because they learned that part was 'private'. So they die.

Men don't check their breast area because men don't have breasts. Well, no and yes - they do have and can get breast cancer. But men are not told that.

Women fear being naked, that 'part above (or 'north') ' is 'private'. they fear doctors seeing small breasts, big breasts, lop-sided breasts, inverted nipples, someone 'feeling' them for lumps and mammograms. asking questions such as "will it hurt?"  for the swimsuit was supposed to cover you - its private. They don't seek examination - they too die. I had breast cancer - I didn't fear the mammogram - I'm alive.

Down 'below' (south) is worse for many women, fearing that god damn awful male designed speculum . The indignity of knees up and apart while a brutal metal instrument is inserted vaginally enough to deter many.  (I learned always to insist on the smallest plastic speculum and a female doctor) . I absolutely believe that if men had vaginas a speculum would never have been invented! 

We women never spoke of periods. And if we did it was secretly, covertly in a completely different language. Body parts re-named 'Mary', 'Pussy', 'penny', 'purse'. I didn't know I had a vagina or vulva until I was an adult. As for clitoris - forget it. That 'spot' was well and truly hidden. I'm encouraged that today girls are better informed. Do know their body parts.
At least I hope they do.

We never spoke of sanitary protection. sanitary towels, tampons. though I have to say my Convent school (an English order of nuns teaching in Ireland) brought someone in, in 5th year (we were age 16), to teach is about Tampax. Show us tampons and how to insert them. a model on teachers desk showed everything. This was approx. 1966. Very forward looking.

 
They came in brown packets - anonymous

 
Remember this? I do. The most uncomfortable item ever to wear.

These lessons would not have happened in an Irish catholic convent school, home grown Irish catholic Nuns (and French) were ultra conservative. .

Irish nuns in those days were still teaching the girls not to wear patent leather shoes for fear men would see your knickers reflected in the shiny leather. (I kid you not)
They even wrote a play about it in the 1980's


Or if you sat on a boys knee be sure to have a telephone directory underneath you too.

They also taught that tampons breached your virginity, the insertion too much like penile penetration. not allowed. Definitely Satan working.

In 1976 (or thereabouts) my friend entered an enclosed order of nuns. I went to help her pack and there in her case was a sanitary towel belt and big, gross looped sanitary pads. I gasped in horror. she explained she was not allowed tampax or even 'stick on' sanitary towels. It had to be a belt and looped towels.

Thank God for my English Catholic school nuns. though even there sex education was limited.

Now girls and women use menstrual cups - hey I'm 65 ...

It is hilarious to look back.

https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwilrbaMuZ_XAhWlJcAKHcIiD4wQFggmMAA&url=https%3A%2F%2Fowlcation.com%2Fhumanities%2FOverview-of-menstrual-pads&usg=AOvVaw2mfWANG_fnKoogMu3HDHeZ

but remember too, our past was filled with shame and silence. We were made to feel 'unclean' . Our Catholic church still 'churched' women in my childhood. to cleanse them of childbirth. My mum was 'churched' 5 times (6 children - one set of twins).

Women in other cultures are still 'cleansed' after childbirth. Still separated, sent to huts during their periods. Women are horrifically mutilated through female genital Mutilation,   Women are seen as 'contaminating men' not only through periods but in all sorts of ways. Still. Toxic Masculinity blames women for almost everything.

Women are 'dirty' .  We grew up with that.

Now I'm old - 65 in a few weeks time. And with a neuro-muscular disease my 'shame' has changed.

'Incontinence' . Not full incontinence. But I cannot 'hold' on.  Muscle myopathy (like a muscular dystrophy) means all muscles are slowly decreasing in strength. I'm at the point if someone got me to a toilet quickly (I cannot walk quickly) I wouldn't need pads. but the health service are heavily into both infantilising and humiliation. Whatever costs less. Your dignity doesn't matter.

 
The community nurse offered me an incontinent pad rather than a human helper to get me to the toilet quickly! I'm not amused.
Needless to say she never told me THIS pad was unlikely to protect me from a flood of a full bladder!

Back to 'pads' . back to 'nappies'. I am not allowed called them 'nappies' but I do - because I like to confront an issue. I'm not 'infantilising' myself - I am describing how I'm infantilised now. How at age 65 I'm deemed either a child or useless or 'passed it'.

Comfy - not! dignity - NO - protection - NO


This 'old' age, 'disability' shaming is now my new reality. Bodily functions are used to dis-empower you.

The secretions from my body render me 'useless', just as my blood from my vagina marked me as 'female' and 'dirty'.

Don't tell me it's not any reflection on who I am. That's not the message I get from professionals. Who see 'degeneration' and treat me differently.

but I will tell you - Margaret is not for shaming. I refuse to be 'shamed' or 'reduced'. I am not ashamed.

But how is it our body is used to dis-empower so easily?

Can anyone explain this to me?

Why does femaleness and disability cause humanity to abuse, reject, dis-empower?

Why do bodies matter? because it seems to
Why does what we secrete matter? because that seems to too.

Explain to me please - body shaming.

because I can't quite believe I have anything to be 'ashamed' of.

I'm an incontinent 65 year old disabled woman - get over it!






Monday, October 30, 2017

Toxic Masculinity - When Woman Speak, Men Laugh

Toxic Masculinity deserves discussing. For too long it has been tolerated, covered up, allowed, swept under the carpet to protect men. The victims of this conspiracy of silence - women - have conversely been ignored, vilified and forgotten. Expected to get on with their lives as if nothing happened.

This week- to quote from an article by 'End Violence Against Woman - EVAW -

 "Michael Gove, current Secretary of State for the Environment in the UK,  thinks it’s amusing, ‘joking' with John Humphrys and Neil Kinnock that being interviewed on the UK radio programme 'Today' can be compared to being assaulted by Harvey Weinstein. All the old white men with access to the mic thought it was funny and joined in. It took a stream of people on Twitter to point out to them that perhaps this isn’t something they should joke about…not while women are still being raped, assaulted, harassed and silenced"

Men joke, laugh, humiliate women. Men in public office think it 'funny'.

Yes, some men do. Unfortunately a great many men do. Toxic Masculinity is rife. It runs through society, institutions, organisations, schools and workplaces.

I learned about toxic masculinity when I was 12 or 13 years old, when I was sexually assaulted, not once, but many times, by a male relative. Years later when I was adult, stronger and more able, I confronted him.

I asked him "why did you do what you did when I was a kid?" at a family children's party. Many relatives were gathered but I was trying on a new coat in my parents bedroom upstairs, away from the party, when he walked in. Now was my time - my opportunity. I was brave - very brave. I expected explanation, apology, understanding. I got - laughter.

He first pleaded ignorance. "what are you talking about?"

I replied "you know what I'm talking about - sexually abusing me"

He replied "Oh that - that's normal"

me; (emphatically) "No it damn well isn't"

him: "it happens a lot in Irish families"  (he was right about that)

me; (incredulous) "What?"

him: "girls like it"

me; (angry) "well I didn't bloody 'like it' "

Then my mother walked in and the conversation finished. and its never been discussed since. I never got any apology. But I know HE knows, that I know. I know everyone else in my family knows - I told them. They guarded their female children.

But my mother took his side, said I was 'upsetting him' .  Tough shit, I thought. My twin sister (also abused by him) was threatened to be 'sectioned' by my father who refused to discuss this man's abuse of his daughters. No, the victim was to be declared 'mad' if she ever spoke of it.

The family 'secret' is still 'secret' - at least to outsiders.

Toxic masculinity, can sometimes be bolstered by female support. We have to consider that too. but that I believe was a life-saving necessity. It was a masculine conspiracy - my mother knew it at a very deep level.

But as a female, in this world I was not going to be safe from Toxic Masculinity. At age 16 I was again sexually assaulted. I was a shy, naïve, 'green as the grass' kid doing nursery nursing training in a children's home when I was 'caught' in the laundry room by the janitor.


We were young in 1969 - I was just 16 - training to be a nursery nurse. I loved the children.

It was a plot by the other nursery nurses to get Tom to kiss me. They knew my life experience was zilch in the male relationship scene. They laughed at my shyness and lack of 'experience' . To all of them, this was funny.

Catch Margaret and kiss her. THAT would be so funny. He did. I was terrified. He was big, strong, dirty, rough.  I couldn't get away. I struggled, my apron was torn off, I heard laughing, He French kissed me. I found it horrific. He let me go, I fled to the nurses residence. I was traumatised, shocked, frightened. I cried. I said nothing. no-one said anything. They had their laugh. It had been 'fun'.

My next experience of toxic masculinity was on the London underground. packed like sardines in tins men groped and pinched. They laughed. We ran the daily gauntlet we women. And said nothing. It was our 'lot' on the tube.

Then I went to Oxford to study. There I met Bill. A toxic man if ever there was. He was a predator and targeted vulnerable students. We were all resident on campus. women on the second floors, men on the first (to protect the women!)  Bill prowled. he tried, boy he tried - but I had a new skill - disassociation . Yes, I learned to go numb, absent, not functioning, frozen, zombie like in his presence - he didn't like that and once hit me across the face.

Bill moved on, and left another student pregnant. She became an alcoholic. Years later he found me. I was a qualified social worker and he rang my office. It scared the shit out of me. I told him to 'bugger off'. He did.

 
The Day of my last Oxford exam. with a bottle of bubbly - Oxford Tradition.


The next experience was as a student in the Polytechnic of North London, studying to become a social worker, I joined Christian Union. I was lonely, scared, depressed and largely 'not coping' with life. That 'scared rabbit' feeling never left me. I was scared of everyone, Everything. I was utterly emotionally 'out of it'. Truly 'out of it'.

The Christian Union Chaplain - Ray - was, unbeknown to me - a predator of vulnerable students. He 'preyed' so he did and was very skilled indeed. I thought him kind, caring. I was wrong. duped.  I was not his only victim.

He took me, on the pretext of a 'drive', to Epping forest where he 'raped' me; (American definition). The UK definition of the offence is now ' sexual assault by penetration'. I prefer the RAPE word. I certainly felt RAPED.  'Dissociation' immediately clicked in. I had learnt that so well at age 12.

I told the polytechnic counsellor whom I was seeing. He apparently (Ray told me this later) went to see Ray and called him a "bloody fool" . and that was it. Toxic Masculinity kept the secret.

20 years later I found Ray in America. I reported him. He was de-frocked, thrown out of ministry (not without several years of me insisting) . I then arranged via his Bishop and an American Therapist to meet him in America to lay down my demons. (The USA & UK Bishops paid my fare). A confrontation. It was hugely beneficial. I told him that I thought of him and his actions. I wish I had taped it. I can't even remember if he ever apologised.

The UK Anglican church gave me monetary compensation. I then had a 'Service' in a church where all my friends, sexually assaulted by Clergy gathered to reclaim our lives. to speak the story of 'Clerical Toxic Masculinity' . It was a powerful occasion. A truly wonderful day of 'reclaiming' our lives.

But this was not the end of my experience of Toxic Masculinity. No. I was to be dogged by malicious, mauling, scumbags. It is rife. these toxic men are everywhere.

Following qualifying as a Social Worker I worked at the RNTNE hospital in Greys Inn Rd, London. One day, I was talking about a client to an audiological scientist, in his room, when another man entered, grabbed me and kissed the back of my neck. It was a hot summer day, I wore a summer sun dress. His arms were around my chest (trapped just as my child abuser trapped me) .  My fear was huge. I fled.

I went to a colleague - a psychologist in the department. I reported him. He begged me to forgive him, He sent me a card, letter, (I never opened it). and he asked me not to report him.  The Union representative - male - chose to ignore me. The female Consultant of my department begged me not to report him too;  "he'll lose his job" but I was determined.

I'd had my belly full of toxic masculinity. As it turned out his disciplinary hearing took place and I was NOT told, nor asked to give evidence. I walked into my department on a Monday morning, to be told by the female consultant "by the way (name) has his disciplinary hearing on Thursday (the week before) he was found 'not guilty'. The other man in the room gave evidence that he "saw nothing happen". (Of course he 'saw' nothing) .  I was not even informed of the hearing. I tried to complain about this but to no avail. It was over.

From age 12 to nearly my 40's I had been 'targeted' as 'fair game. 

What freed me from the vice of 'toxic masculinity'?

what, who taught me to 'fight back'? It was Deaf/deaf children.  I was uncovering deaf/deaf abused children in my work. I could not get any professional to help them. No-one knew what to do.  I was determined to help them and set up the 'Keep Deaf Children Safe' (KDCS) project. 

I taught social workers, teachers, police how to support Deaf children, then my work expanded to lecturing about abuse and neglect of all disabled children. 



I then met 'feminism' - I met women fighting violence against women. I met GREAT women. I learned. I claimed my self as worthy, whole, abused, violated but perfectly WONDERFUL. I found myself a wonderful women.

I set up two support groups for women sexually violated within Christian families (CSSA) and by Ministers & Clergy (MACSAS). I met fabulous, courageous, strong survivor women. No - 'Warrior Women'.

I did my doctorate on 'clergy sexual exploitation of adult women'.

I fought Toxic Masculinity in all its guises.

I will never stop fighting Toxic Masculinity.  My present 'war' is with 'Toxic Masculinity within the medical profession. I am now an 'old' woman of 65. Yet I find myself still fighting, dealing with, trying to overcome the 'Toxic Masculinity' of my male doctors and Consultants. I am now sick, disabled with a Rare neuro-muscular degenerative disease. I use a wheelchair as does my identical twin.

Me                Ann

We meet Toxic Masculinity in GP surgeries, in hospitals, in A&E , in the Irish Health Service (HSE) and our fight against Toxic Health care is a Woman's fight. (but here men suffer too). Male misogyny is endemic. Female patients are still 'hysterical women'.

And when I finally die - I will be 'That WONDERFUL woman - who fought Toxic Masculinity all her life. And some WILL say - I made a difference. I saved lives. I was part of the healing.

But I will say - I couldn't have done it without my sisters in the fight. Those other WONDERFUL women .

We don't laugh like many (not all) men do - we fight the warrior fight . We are Grace O'Malley!  The 'Graces' .

 
The warrior - Grace O'Malley

Receiving the Emma Humphries Memorial Prize (2004)
for my work
an honour from my feminist sisters.  
A very proud moment
 
 
 
post Script:
 
Interestingly I left one man out of my list of 'Toxic men' in my life. Later I wondered why. It was, I think, definitely because of shame. He certainly 'crossed boundaries'. No overt abuse as such, but definitely his therapeutic practices were unorthodox and questionable.
 
'Re-enacting' abuse scenarios was one of them. He sailed mighty close to the edge of sexual abuse. Mighty close. His methods were extremely damaging to me.
 
He nearly destroyed me and all the time he had me believing it was my abuse in childhood that was 'disturbing me' not his methods of therapy.
 
I later joined a group of women in POPAN , a group for those abused by therapists or doctors,  to try to heal.
 
In my late 20's I knew I needed to seek help with my childhood abuse. I sought the help of a child psychiatrist specialising in child abuse.  He was a very slick operator, with a personality that exuded the 'professional who knows everything'. The man who is 'expert'. Full of himself. He was well known in the child abuse professional scene. An area I now worked in myself. He was a maverick. I was well and truly tricked by this bastard.
 
Only years later did I hear rumours.
 
Rumours of his mis-use of power. Destroying families in court cases over child custody. He was eventually found guilty of professional misconduct at the General Medical council. but still allowed to continue practicing.
 
Recently the UK police contacted me. Out of the blue. They were investigating him. he was on bail. There were 'many cases' being investigated.  But then the CPS decided not to go ahead with prosecution due to 'insufficient evidence'.
 
 
 
Innocent
 
I can tell you this man was once a dashing, tall, very good looking man. Nothing like this picture. this was in a newspaper about a year ago and it shocked me. One day I hope he'll meet justice in all its force. He certainly deserves to.

I hope I live to see that day.
 
 
 
 

Tuesday, October 24, 2017

When Money buys you medical care - GP's forcing payment in Ireland

I truly despair of Ireland.

 
Care

Society seeks to support some downtrodden people whilst ignoring others.

For example, the homeless are supported, at least, by the general public who try to save lives as our right wing "We serve those who get up in the morning" politicians try to kill them.  I admire Irish people who do serve homeless people. I abhor the suffering caused by this FG government we now have.

Children are also well supported. I read a poll this morning. Should the under 12s get free GP services?

It wasn't...should old age pensioners get free GP care? (over 70's can avail of GP visit card, but not all GPs have signed up to this. if they haven't they need to change GP),

Compassion
 

It wasn't, either, a call for free GP services for disabled people or those with various illnesses...no it was FREE for largely WELL children.

Yesterday my GP said she would NOT take my bloods unless I paid 20euro.

I'm a medical card holder, I don't HAVE to pay. I'm not obliged to pay. I shouldn't have to pay. But according to her I did.

I refused. But her alternative for me, a woman of 64 with a RARE neuro-muscular degenerative disease, in a wheelchair, and feeling shite most days, was that I get myself to St Vincent's University Hospital , miles away,  for bloods.

That entails me going down to my local train station, 15 minutes to get there. Travelling by DART train into St Vincent's - another half hour, waiting an hour or more in bloods Q, and then travelling back home again. It also might rain and in a wheelchair I'd get soaked.

 
I am very sick
 
 
I use a wheelchair

She had no qualms about this. None whatsoever. despite , as a medical card holder legally, I don't have to pay - she refused to take my bloods. That's a morally, ethical GP and sadly YOUNG. No moral compass at all.

Stuff medical card holders, stuff your miserly pension, stuff your disability, illness, age etc. If you don't pay you don't get bloods in MY GP surgery.  You go somewhere else. Not my responsibility.


No money - no bloods - simple eh?


I was disheartened further by my Greystones community supporting the GP, not the older person asked to fork out 20euro despite being on a medical card. Despite being on a pension. Despite being very ill, and disabled.

No comments on asking the sick, older, disabled patient to travel miles on public transport to a hospital for something SHE should have had done in the GP surgery.

No, the comments ranged from "Why should the GP do bloods out of her own pocket" ( she'd have to pay for courier to transport the bloods - I agree largely - but I can't fix our medical system, and I should not be penalised for being a medical card holder).

"Why should they be free" (because they are supposed to be for medical card holders)

All seemed to feel the trip to St Vincent's perfectly ok. The absence of any comments about the patients dire situation spoke volumes.  To them it was reasonable. Perfectly reasonable for a sick, older, disabled wheelchair user to go to DART and go miles for a blood test, whilst others with money can pay and get their bloods there and then.

But all commentators, as far as I know, were well, and generally well off , as is the demographic here in Greystones.

A town that is proud of itself and insular and well...not particularly socially aware of the less well off. Certainly hugely ignorant of issues around the elderly and disability.

So I feel very battered by yesterday. Battered by a GP, who young and just starting out, has a morality more akin to Trump in the USA or May in the UK and FG in Ireland, than any more socially aware and compassionate role model than THESE right wing individuals.


PAY - you miserable old, sick, disabled woman giving me grief - PAY!
 


it saddens me , it horrifies me, it is a state of mind that is killing any sense of social justice in Ireland.

Yes, Yesterday was painful.  This country is NOT a country for sick, disabled, elderly people.

We don't count. We drain the 'people who get up in the morning' pockets.


Tuesday, October 17, 2017

Storm ophelia Home Helps and personal assistants (PAs)

I bunkered down yesterday. The news was dire - threatening a virtual apocalypse!  We were all doomed. The news had a full team of emergency crews briefing the day before, including a bloke in Army uniform looking terribly serious. Enough to make you very, very nervous indeed. Yes, Ireland was about to implode.



The biggest storm Ireland has ever experienced


They even rolled in a Sign Language interpreter - something they don't normally do for the 'hearing people's news'. Och, the 'Deaf' news is separate altogether. Unity/equality through Ophelia?

So we sick, disabled older person were left knowing catastrophe was a matter of hours away.

Did anyone contact us - the day before. The evening before?  I mean by 'anyone' the services who are entrusted with supporting us live safely, fully and many of us independently - with help. NO. Not a singe word.

I got no text or phone call from Home Help services at all, either over weekend or morning of the storm. Nothing at all.

I got a text at 9.53am on day of storm Ophelia from the PA services co-ordinator which went:

Hi All, as you are aware severe weather is reported for today. there is a possibility that your PA may not be able to travel . can I ask you consider alternative support via family and neighbours so that you are prepared. fingers crossed it won't hit as bad as predicted but just in case.

(no name - no emergency number - nada)

This was meant to reassure, cover the service, make sure we were ok?

It was sent to disabled people, some who might neither have family or neighbours to help. I mean what if I need getting out of bed, cooking breakfast, being dressed, wiping my bottom, getting into wheelchair etc. Is this message not rather simplistic?

I mean was this sent to EVERYONE? or did the co-ordinator KNOW it couldn't possibly be 'enough' for some?



storm co-ordination, but NO co-ordination for sick, elderly or disabled people?


Let me analyse that message.

  • there is a possibility your PA may not be able to travel
'possibility' - well can she or can't ? I actually need to know. I mean will someone get me out of bed. This is rather flimsy as a 'preparation' text. Bit late too on the day of storm. if the emergency services worked all weekend to prepare the population, to organise...where were YOU. did we not count? was it ok just to send a text message at 9.53 on the morning of the storm. 

In fact where was the HSE?  How did YOU safeguard older, sick, disabled persons living alone or needing services.

  • 'consider' support from family and neighbour' .
well I will certainly 'consider it' , but how will you know its sorted? I mean my neighbour might be a raving alcoholic, an old person of 90, or the house next door is empty.

My family may not 'give a shit' whether I'm alive or dead, as it turned out only one sister, my older sister age 78 who lives miles away, did ring the night before to offer 'advice'. but no-one came over. no-one helped me do a big shop for the 'bunkering in' - they never do. So what PA service co-ordinator, do I do when family and neighbours don't help, won't help, can't help?

was your text message enough to 'sort' out the storm cover I might have needed? was it enough help?

  • fingers crossed it won't be as bad as predicted
Actually, PA co-ordinator what was predicted, by top professional meteorologists, was utter mayhem, virtual Armageddon, and you rely on 'fingers crossed'.

I was watching the TV predictions and I was very worried indeed. No text such as yours covers my fear and anxiety one jot. I suspect many were quite terrified. and left quite terrified. They might have NEEDED you. not just 'fingers crossed'

So what actually happened for me (I wonder how others fared)?

luckily I had my PA and home helps phone number. I had texted both the night before the storm broke, and told them "do not come out - I'm fine"! well in fact I wanted THEM safe - I didn't want their lives endangered. I wasn't 'fine', I needed help, but their lives mattered. (Sunday evening- I was 'working', preparing, whilst the service providers took their weekend off)

I then dragged my twin, in her p-j's to shop a late, Armageddon shop. No weekend Home help or PA (though my nurse has asked for that for nearly 2 years now). I had to walk around Lidl as my wheelchair was in my twins house. It was very difficult indeed. I had no neighbour or family to get supplies in. I never do.

So I was mightily cross to receive the rather 'light-weight' text from the PA services co-ordinator.

I don't think the Home help service (no messages at all), the PA services co-ordinators 'fingers crossed' or the HSE - nothing at all,  were really 'safeguarding me' in storm Ophelia's destruction.

I felt entirely unsupported.

I relied on my equally sick, disabled , old twin (yes we are old) to help me.

And no services...did their job properly. it was a shambles!

Call this disaster management? I call it shoddy, unprofessional, unprepared and dangerous. It did not cover 'care, support' and it was irresponsible of the service providers. (at least in my area - co Wicklow)

I'm hoping others were better supported.



 








Thursday, October 12, 2017

Disabled people - supposed to be grateful

'Rights not Charity', 'Piss on Pity'
 
 

About two weeks ago I rolled past the Catholic Church in Bray. There I was in my wheelchair and towering above me at the gates of - CHARITY - were two school kids aged approx. 13 or thereabouts. It was a school day but they were out in their uniforms standing quietly, not in your face, not 'aggressive' (like some charity collectors) with charity money boxes in their hands collecting for Enable Ireland. They looked rather shy and unsure what to do. Two little statues willing the coins into their boxes. Shoring each other up in a task they looked nervous about.

I've nothing against Enable Ireland, a charity that supports people with cerebral palsy and other disabilities. I hold no angst against the schoolgirls socialized early in 'Charity' for disabled people.

But I do abhor the rattling of charity boxes for disabled people. I abhor the whole Charity 'movement'.

To me 'Charity' holds stigma, no matter how nice a charity is you are left feeling that you really don't deserve State support, that you shouldn't really be as you are and Charities are going to, by the good of their little hearts and souls love you EVEN if you are a crip.

The whole Charity business - and it is a business now - sticks in my graw.

Collecting money for Charity depends on 'feeling sorry for' the poor crips. It teaches a certain mentality - persuasive manipulation, that 'doing good' for crips is so utterly saintly that you win awards for being the best fundraiser, the highest collector, the good charity worker. Sports stars engage in charity for extra kudos. Its good for their image. Politicians put their arms around disabled people for the Ah factor - the Vote. Isn't he/she so good for all their charity work.  Tell me this isn't humiliating?! tell me this doesn't 'other' you in so powerful a separate world exclusionary reality that nothing else does?

One charity even sells ANGELS to raise money. The Angel day. Who is the Angel - I ask - me or them? Its simply 'not normal' is it?

I abhor the early socialisation of school children that 'doing good' means rattling boxes for those poor crips born in Ireland. I abhor that these same children will grow up with no other reality other than crips can't do it for themselves!

They will grow up in a self-righteous belief that they have done something 'good' for crips that day. They collected money that the charities need because the state does not care for those born disabled. they will go home feeling good. Not ever having had a conversation with me.

They won't be politicised to understand my perspective. No-one will teach them about the humiliation of Charity. They won't know about 'rights'.  If you know about RIGHTS you or your school would be banging down the gates of Leinster house demanding the ratification of the UNCRPD.  Not rattling the charity boxes outside a catholic church.

I felt sad passing these girls. I wanted to ask them "What are you doing? and Why? But I knew they were children. Children with not the maturity to think through the annihilating truth that Charity is dis-empowering, humiliating and downright exclusion from society.

It only says one thing. We exist by the generosity of non-disabled humans around us. We shouldn't by rights be alive, and the State won't support you so you should be grateful for the two children winkling money out of begrudgers pockets!

At the end of the day, society would really be happy if we did not exist.

Why else did this government only give a 5euro rise in Disability benefit, when 20euro is said to be needed. Because, my friend, we are not PART of society. we are 'useless eaters' (Hitler's words) . Being in poverty, homeless, unemployed with little or no care services is OUR FAULT.

That's why only 5euro only - that's why two school children stood at those gates - doing good for the poor crips.

we don't 'belong'.





Thursday, October 5, 2017

PAIN in HSE area CHO6 (Co Wicklow)

Its not really hard to understand that PAIN is difficult to deal with.



Pain is always " NOT welcome" and we humans have fled from its grip as best we can.  My pain is off the scale points - especially at night. I get little sleep.



We can thank the pharmaceuticals (about the only time I do) for a myriad of pills and potions that might help. 

Except of course some of those pills have dire side effects and can cause stomach ulcers, bleeds, strokes and death . But in the midst of PAIN no-one thinks of that.

PAIN must be got rid of.
Almost - though not fully for me - at any cost!
roll on medicinal cannabis - yes I'll have that when the Irish Government tries to be intelligent about it - which might take a long time.

We can have access to pain management clinics - which is a misnomer really as here in Ireland its merely a 'pill management clinic'. Where the consultant plies you with ever more medication that's a sleepy-inducing haze of nothingness so life is nearly extinct. Yes the PAIN is gone but you feel shit and dead and can't do NADA. Well that's no good.

I abhor how my head and body feels on high pain medication. I feel sick, dizzy, constipated (always a side effect) and generally so damn awful I almost prefer the PAIN with a clear head!

If you reject the pain meds you are seen as 'uncooperative' or 'un-teachable' in the PAIN stakes - wasting consultants time. You are discharged as 'untreatable' due to rejecting Consultants advice. How dare you!

Proper PAIN management is holistic. It doesn't just rely on pills or potions. PAIN management is a skill. A highly tuned medicinal art perfected in the Hospice movement - palliative care.

But my experience of PAIN management in CHO6 HSE area Co Wicklow, has been the 'pills' only type. STRONG pills - I mean morphine. I can only tolerate 5mg of Morphine, anything higher I'm under the table like a drunken sailor.

I have a Rare neuro-muscular Disease - my heads not 'right' . I blame my brain for my non-tolerance of pain medication, and I blame CHO6 HSE Co Wicklow for very, very poor pain management indeed. More can be done - they just don't care - or is it plain incompetency?

The Irish health service (HSE) do not consider other options. And there ARE other options for PAIN relief. May not rid you completely of the demon, but certainly eases the edges of it. Enough to make it bearable or get some sleep at night.

A good bed to sleep on, if like me, osteo-arthritis has crumbled your spine, hip, knee, neck, shoulder a good bed, mattress, suitable for an ARTHRITIC body is essential.

But the only mattresses for a bed the HSE CHO6 (Co Wicklow - where I live) allow, are for those who might have 'skin integrity' problems/ That is the person prone to bed sores - which I am not - yet! 

These are foam mattresses and Air mattresses, neither suitable, nay totally contrary to Arthritic PAIN care. and if you don't fit this criteria of 'pressure relief' they don't know what to do. Am I the ONLY oldie in dire pain in Co Wicklow?

The HSE do not do beds at all really. The concept the BED is a clinical tool for PAIN management is alien to the PAIN management team. Actually there isn't any such thing as a HSE area primary care 'pain management' team.

Because the BED is normalised meaning 'comfort, you supply yourself' . nothing to do with US unless you have 'tissue integrity' problems - which I don't.

So discount BED in HSE PAIN care. Though they did, a few years ago, give me a hospital type bed as I needed help to move in bed.

 Me in my home 'hospital' bed with Doggo for comfort.

But hey, they did offer a new bed last year, a NEW hospital type bed and I was agog with delight, glee and excitement. It arrived, the delivery man came into my bedroom and saw my 'old' hospital bed.

The 'new' bed which is the same as the 'old' bed! 

"is that yours?" he said "yes" I replied, "but that's the same bed as I'm delivering" . It was NOT NEW as in different. it was the same as my old one. And what did he do? he dismantled the old bed, and 'delivered' the 'NEW' bed (the same bed type) because that was his job - to deliver a NEW bed. So he did. Only in Ireland.

So discount 'bed' as CHO6 Area Co Wicklow's chosen means of relieving PAIN.

So what do the HSE CHO6 offer?
Physiotherapy?

Yes, but only 4 sessions (or is it 6) every 6 months. A blast and a whoosh and then you are discarded. Completely. In fact you can go longer than 6 months...  Here's two CHO6 Area stories:

  • A woman with Parkinson's NOT taken to a special Parkinson's      physiotherapy group as they 'don't supply transport'. In fact the HSE are obliged to facilitate this if the physiotherapist had advised it - she had! The woman never got to this group.
  • a Woman had a stroke, went into Donybrook rehab and came out walking. But having NO CHO6 physiotherapy offered on return to her home, she is now using a wheelchair. The services disabled her.  She should sue - but probably won't.  
My allotted 4-6 sessions of physio necessitates me having to travel miles from Greystones, Co Wicklow to Dalkey. As I don't drive and transport is NOT arranged by HSE I must hope my twin is also having physio - she drives - or I must catch a DART train. No mean feet when ill, disabled, in a wheelchair and in PAIN.

So, physio is so sporadic as to be totally ineffectual. In fact, you can say, it really doesn't exist for public patients in the community. NADA. Just go away - don't bother us.

Hydrotherapy is often argued the really best form of exercise for Arthritis. I've been advised by a specialist Irish physiotherapist who assessed my gait in CRC that I should be in a pool twice a week.

But no hydrotherapy pool around my area allow ME in. I 'don't fit in' as their client.

I am not a child, (enable Ireland Bray),
nor part of a rehabilitation programme - (National Rehabilitation Hospital Dun Laoghaire)
nor dying - though I have had cancer, (Blackrock Hospice - who DO allow a mother and baby group but not an oldie like me in excruciating AGONY)

So I can't avail of the warm pools reasonably close by. So bugger off you old woman in dire AGONY...you can't come in and NO HSE official will press the issue. NONE.

So where does this leave an older, 64 year old, in dire agony - PAIN - who in area CHO6 Co Wicklow Ireland gets no pain management or help whatsoever. (Please do NOT insult my intelligence to say 4-6 sessions of physiotherapy is a service. its NOT - its an insult.)

well as I've said 'holistic' in PAIN management is simply not done in Public HSE Primary care. At least NOT in CHO6 Co Wicklow.

Should we accept this?
NO
do we accept it?
Yes 

but not me - I complain, I shout, I argue, but get no-where because I'm an old 64 year old who should be shoving of out of HSE care over the rainbow bridge and be gone.

But 'I'm NOT DEAD YET' and I'll still fight for PAIN care.

 

Sunday, October 1, 2017

I'M Back - being thoughtful again!

Its been some time since I posted. Life has been....difficult, challenging with some uplifting moments. so here's the latest.

Its very hard being disabled and sick in Ireland. Its NOT a 'fair' country. No country is where health care access is based on your income. If you can afford insurance you get treated, if you can't you don't or either you must wait years or months for treatment. Ann & I were recently refused as patients in our only NATIONAL hospital for neurology in Ireland. The specialist hospital refused two older woman age 64 from their expertise. Despite ample evidence that other hospitals have said they cannot treat us. We can only believe this is 'ageism' and 'eugenics/euthanasia' by refusal of health care. What else can it be, for it cannot be justified. On any level.

That has depressed us very much. Its awful knowing you are simply 'not wanted' by health services. It is utterly frightening. terrifying.

this is a picture of us demonstrating outside the Dail about three years ago - at that time fighting for decent powered wheelchairs! (the basics). to think we are still fighting for care is horrendous. Its been years now.

Ann continues to be unwell and had another spell in hospital - very sick, as I did, in fact we were BOTH in different hospitals at the same time. I have been in hospital twice this year and both times had to run the gauntlet of rude, abusive medical personnel. I'm thinking more about this recently. how Irish medicine now is more often 'abusive' towards patients.

This week I heard from a social worker how a woman with MS is refusing, point blank, to return to her male neurologist. Just will not - due to abuse.

3 out of the 4 neurologists in a hospital I know have rude, abusive neurologists. Arrogant, misogynous male consultants who appear to want only two things - Power & Control over patients. 

But hey docs - we are much more intelligent , and knowledgeable these days. Patients cannot be 'controlled'  as you used to in days past. the transition from Consultant power to Patient power is ugly!

and power is seen in public protest demanding rights and Ann & I do not shirk our duties in that regard. we've been out , outside the Dail again.

Ann asks Minister Finian McGrath, minister for disability - "eh Mr McGrath , Mr McGrath (as he tries to bolt before any difficult questions) can I ask you just one question...can you give us a date on which the UN Convention on rights of people with disabilities will be ratified" well our Ministers are masters of 'the fudge' - "we hope by Christmas" he replied, as he replied last year -2016 - and others before him for 10 years. I kid you not - 10 years! So, of course we disabled people ask "and which Christmas do you mean Mr McGrath?"

We took ourselves to a local hotel for a weekend away when we were at exploding point. Just so much stress. as evidenced by our Hotel room. but we had a lovely time (except for very, very HARD beds).
 chaos - a state of mind
Freedom


Top of the world - Killiney Hill

Killiney Bay
 
Then we had a week in respite care with MS Ireland and we found that too, challenging, interesting and lots of new lessons learned.
 
But reality is reality....we STILL are in a deep mire of negotiations to get the HSE primary care support we need. God, its exhausting.
 
Then only last week a huge and tremendous day for disabled people organised by the new group 'By us - with us' it was billed as a memorial day to deceased disabled campaigners and a call for unity, Community and fighting for disability equality in Ireland. a truly fine day was had.
 Hubert & Lord Mayor of Dublin ; Michael McDonncha
 Mary Duffy
 Sarah Fitzgerald
 Suzy Byrne
 musician
 Joanne Chester
 Shelly Gaynor
 Ann Kennedy with Deputy Lord Mayor reception after day
Margaret Kennedy



So summer 2017 saw protests, holidays, celebration, death and beauty.

The death must be mentioned. A little bundle of fur crossed 'Rainbow Bridge' to doggie heaven. We were both heartbroken. Ann's wee Chihuahua, 'Ana chi'  took terribly ill and we lost her. We had to say 'good-bye' to a loyal friend.
our 'good-bye Ana' photo; you wouldn't know it, we were heartbroken,
Ana was very, very ill...
 
but a new wee 'fur-ball' arrives next week
 Elsie-Bella

From 'Chihuahua Rescue' she comes from a 'hoarding' case where 22 dogs were rescued from appalling circumstances. Elsie-Bella will be So loved .
 
So life includes hardship, fighting for your rights as a disabled person, solidarity & celebration
Beauty & Peace
Friendships & wee loved Doggos
and you know
 
We can NEVER give up!