No-one will come

Three days ago I had a very bad night. I got out of bed, with much difficulty. no help. I live alone. Single. No one to 'be' there for me, except a twin, equally sick, who lives in her house, not with me.

 

Ann Kennedy & Dr Margaret Kennedy

I was screaming in pain and distress. I was emotionally exhausted, physically wracked in agony, tired of the struggle. I phoned the public health nurse clinic, I left a message - "Please can you ask her to make a visit"? I needed someone to talk to.

She didn't phone me, call or see if I was ok. I have not heard or seen her all this week.  THAT is the level of HSE care and support. NADA.

Not that unusual.

I am in severe, severe pain.  I sleep little on a crap HSE delivered hospital bed. I've begged the HSE for a decent bed. I cannot move in bed, turn over, re-position without extreme pain. Pain from osteoarthritis which has ravaged my spine, knees, hips. No I can't have replacement surgery because I have a rare (Unknown) neuro-muscular degenerative disease. I am on morphine.

The four diseases that coalesce into my one weird unknown rare disease are Parkinson's/Parkinsonism, muscle myopathy, Dystonia and a defect of energy production (mitochondrial disease queried).  No UK specialist has seen this disease before. My twin has the same plus a raft of auto-immune diseases.

Margaret undergoing a CPEX test in Royal Victoria Hospital Newcastle UK

 WE had sophisticated, expert tests in the UK that Ireland could not do.

 Ann has the CPEX test done

Having been to the UK three times and told by UK specialists we need more tests the Irish doctors think otherwise. Refusing to follow up UK recommendations. In fact the UK reports languished on a neurologist file ignored. He put me on a yearly 'routine annual return' list and ....forgot about me.

He did absolutely nothing to determine

a) what was wrong with me by arranging further tests recommended (He did send us to UK under the E112 scheme - but he decided thereafter not to be active in our care)

nor did he

b) take an interest in trying supportive or even some palliative treatment measures. Of the 'care plan' devised by the UK he admitted on questioning that "I suppose it was my job to [Implement it]".  He never did. Nor cause it to be implemented.

The message was 'Go home - live out your life comfortably with HSE support. We won't send you for more tests. We won't treat you, We won't find out what's going on - you are OLD (age 65) not worth it'.

I know what my body is doing mostly, though some aspects of understanding remain.. I'm now in a wheelchair - as is my twin - but I don't know WHY? 

Yet Consultants in the UK had ideas and they made suggestions - trouble is the Irish Doctors, I was told; "have a different view" . I don't even know which Irish Doctors 'have a different view. All I know is I left my useless neurologist - and put in a complaint to the Medical Council.

I have serious Parkinson's/parkinsonism features, I cannot walk, I'm on Parkinson's medication but I have no neurologist (since Beaumont Hospital refused to take us rare twins on as patients) to look at my medication to see if more is needed. Or if I need something to help my walking.

I must be the only Parkinson's patient in Ireland with no neurologist. Its terrifying I have no consultant to talk to.

Why? because 'Irish doctors have a different view' to top UK specialists who did tests Irish doctors couldn't even dream of doing.

Yes, the tests were done, things 'found' ,  and when we returned - ignored and refuted.

I can't get back to the UK for further tests recommended because 'Irish doctors have a different view' and there's no consultant willing to sign me or twin back to the UK under the E112 scheme for cross boarder EU  care.

I am put on Island detention. I'm in a prison.   Ireland has become our medical prison. A prison that refuses to treat us. Care for us. let us out...

No doctor , HSE official, Minister Simon Harris cares enough to do (or arrange to be done) the tests the UK say we need. The tests we know we need. Why?

because we are OLD. Not worth it!?

its all about costs. Twins age 65 are not 'worth it'. We've been told 'what's the point, there's no treatment, no cure'.  Well there is a point - knowing your disease does significantly impact on service provision, mental health, acceptance and coping strategies. furthermore we have a right to a diagnosis. Is that not 'worth it?'

So what of the 'go home and die with HSE support in the community'. This is a joke. Completely farcical.

The HSE has, in my view, done very little to support me/us. They say to TDs who try to get me (and twin) the care we need that we have a full 'highly skilled professional team" caring for us.

I have home help - yes, I'm grateful - I have 7hrs per week 'Personal assistant' (PA) - not enough. Not near enough to affect a 'life worth living'.

So what of my 'highly skilled professional team caring for me' - well that is very debatable.

I have a social worker...I never see, she doesn't return telephone calls. so far she has not done anything to improve my quality of life. (a psychologist has assessed both myself and twin as suffering severe PTSD and with 'quality of life in the bottom 20% of the population) Mostly caused by the lack of 'independent living' support from the HSE.

The Social worker has done nothing to improve my 'quality of life' - nothing. she is not 'available'.

I have a physiotherapist, I'm allowed 4 sessions of physio per 6 months - I hardly ever see him. Though he visited me before Christmas and declared in writing his concern about my risk to falling and supplied me with more walking aids.

He told my GP I urgently needed a neurologist. The GP said he could do nothing about that! (I'm on a 4 year waiting list at Tallagh). he just 'opted out'!

I chose to leave a neurologist who was doing nothing - my 'punishment' was to be put on a 4 year waiting list. and my GP doesn't worry about my lack of neurological care. I despair of medical care in Ireland.

The HSE refuse hydrotherapy , the only form of therapy my body is now capable of. known to alleviate pain, to keep you mobile and strengthen your muscles - it is refused.

I have an Occupational therapist who, so far has supplied a chair to sit on, but not a decent bed to sleep in (I've asked for nearly 4 years), not arranged seating adjustments on my wheelchair which is crucifying me,(I've asked endlessly)  nor arranged how I can live my daily life with this disease. I rarely see him.

I have a public health nurse - a nice woman - but whenever I need her she's not available. She doesn't come when I just need support.

and that's it...in effect - I'm 'known to services' but sure as eggs is eggs this doesn't translate as ... I get 'a highly skilled professional service".

I'm on their books...I'm known - but I get very little.

I know its pointless contacting the social worker or nurse if I'm in terrible distress. no-one will come.

No one will come.

on those days I cling to my raft trying not to commit suicide.

Now the HSE has agreed to pay for a years worth of psychological support.  They effectively ground me and twin into the ground and decide "oops, we better save the drowning rats".

I am now asking, as well as my twin, for a fully 'independent living, self directed care package'.  That the HSE give us a budget and we arrange our own care and support.

The HSE are prevaricating, arguing, delaying, refusing this...

We want 'out' of HSE power and control over us. We want rid of HSE professionals (as far as possible) in our lives.

They've done nothing but crucify us, destroy us, no...try to annihilate us.

They called us 'serial complainers' for complaining about the services we were given/not given. We put in an official complaint about that and won.

 https://www.google.ie/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwin8cPIlKrZAhXMLsAKHdKXDRcQFggpMAA&url=https%3A%2F%2Fwww.herald.ie%2Fnews%2Fcalling-disabled-twins-serial-complainers-is-unacceptable-says-td-35401611.html&usg=AOvVaw0zbGUppSn-P91G-rVsw9j_

The HSE had to apologise.

They were recommended to sort out the mess. two years on from winning out complaint the HSE has NOT given us a 'life worth living'. 

THEY seem intent on destroying us.

We are disability campaigners. We are disabled activists.

We are Human Rights defenders.

We will not succumb to HSE destroying us. We will fight for 'Independent Living'. We will fight to LIVE a life worth living.

We refuse to be confined to a 'death wait'. just to pass the day staring at our walls - waiting to die. That's what the HSE want

we will fight for medical care - a diagnosis - treatment
we will fight for 'independent living'

We may be 65 - but we are worth it. We refuse to be annihilated by Irelands health service.

 

 

. We will never give up

When will we be equal?

OK , not all disabled people (Identity first language) , people with disabilities (people first language') like the word 'Crip'.

I accept the argument but I have 'reclaimed' it. It's mine, its me. I like me. OK.

In days gone by (and often not even 'gone by') the 'Crip' or 'Cripple' word was seen as, and used as, abusive, pejorative and nasty. But more and more disabled people are using it as a strong affirmation of who we are. A two finger, or more commonly now, a one finger 'salute' to the 'normals', who like to describe us, and give us labels like 'special needs' or lump us together as if we sort of are like identical clones with no identity becoming 'the disabled'.

I am a disabled woman, I am the 'Crip with a Whip'.  But what happens when the 'Crip' , who tries to be 'strong', feels utterly dis-empowered by 'Cripdom'? or is it really by 'cripdom' or 'abledom'.?

Well, she, or he, must analyse the 'Crip' situation and ask the questions. Why, what, who, when?

Why? I will ask and answer ...

Why do you feel 'disempowered' ?

because I can't do all I want to do
because I don't get the support to do what I want to do
because I'm not allowed a say in my life, my care, my choices, my freedom
because I'm seen differently and treated as second-class

Now analysis due.  Has any of this got to do with being disabled? er...no, not necessarily so.  I may not be able to run in a marathon, but many cannot. I may not be able to drive, but many don't.

A lot of my difficulties are not because I'm disabled (as in, have an illness/impairment) but rather because I'm being 'dis-abled' by society, by the HSE, even by family and friends.

The world is made for 'normals' not 'crips'. That's plain discrimination. that's ableist crap. that's wrong.

What? - What am I prevented from doing?

I can't travel easily , equally like non-disabled people do
I can't go to a toilet if its not accessible
I can't go to a show, theatre or event if its not accessible
I can't eat in a restaurant I'd like to because its not accessible.

Now - analyse THAT!  Margaret you start off with 'I can't'...as if its YOUR impairment, disability, 'cripdom' that is preventing you.  That's the ableist argument.  that's the 'normals' telling you, you have the 'problem'. its your 'disability' that prevents full access. No its not.

Its time the rail authorities, restaurants, shows, event got cracking on access. this is THEIR problem.  We claim our equality. this 'crip with the whip' won't stand for it!

But we ALL must claim our equality. We must resist ableist discrimination. that argument that our illness, disability, or even age bars you from everything others - the 'normal's' access.  this is discrimination, oppression. its not equality.

Who? who is creating my inequality?

I can't get the physiotherapy I need
I can't get the specialist consultant I need
I can't get a PA self-directed package - the HSE refuse Independent living.
I can't get out of my home

Analyse Who?  Who are the people discriminating against you. Oppressing you, allowing you deteriorate, allowing you suffer?  it's not me - that's for sure. Its PEOPE. Make no mistake about it.

People who claim they have no power (HSE) or money (government ministers) or services to provide (hospitals).

PEOPLE , other PEOPLE , I can name every one, from Fninian McGrath, Minister for Disability, to the Primary care area manager Mr G or MQ, to the hospitals CEO Professor Mary Day...and to a dangerous neurologist...I can name PEOPLE who have destroyed my living independently as a sick disabled older woman.

They are all within that breed; 'the normals', all of them, with power and control over me - and they use it. They also justify it. They justify systemic oppression, discrimination. They have the power to destroy my life - and do so.

When I read this morning how 25,000 old people are illegally incarcerated in homes and nursing homes I realise the power of the Magdalene laundries, of the mental asylums , of the industrial schools is STILL deeply ingrained in Irish Services culture and psych.

My inequality is created , its not accidental. its not 'just because' I am sick/disabled, its not an 'oops - I forgot' scenario,  - no, its a desire to see us as 'lower beings', 'not worth it', 'expensive' .

Its eugenic, its Nazism, its oppression, its discrimination. Its real - its happening.

Ireland by NOT ratifying the UN convention on Human Rights for Disabled people, the only European country not to...has declared me 'subhuman'.

when?  When am I oppressed, discriminated, made to feel powerless, with no agency or control?

When 'normals' make decisions about me - without me
When medics ignore what I'm saying or describing
when the HSE hold meetings about me - without me
when I'm denied 'independent living'
when treatment is withheld, not provided
when I'm left on a freezing platform with no rail assistance
when the pub has no disabled accessible toilet
when 'normals' park in disabled persons parking bays
when taxi drivers whiz pass on seeing my wheelchair
hen I'm made homeless because the council has no accessible housing
when I'm incarcerated in a nursing home and don't need to be there
when I'm told 'don't bring your wheelchair' to a party
when the bird sanctuary I love to visit has no accessible boardwalks (this is going to be fixed next week!)
when I can't read the National Gallery's labels beside the pictures and there is not enough large print books (which don't list all the pictures anyway
when the cash machine cannot be accessed
when the train statin 'forget' I need offloading
when the disabled person's alarm is de-activated on the DART and I cannot call for assistance
when a therapist works out of an inaccessible building
when the GP has no accessible room I can access
when shops pile the isles with goods, trolleys, boxes and I must keep asking them to 'move it'.
when I don't get the wheelchair I actually need
when parents won't fold up their pushchairs and let me use the bus disabled accessible area.
when people patronisingly smile/smirk a look that simply says 'ah you poor love'
when you won't let me pay for my coffee
when the temp PA does not do her job and leaves my bedroom in chaos
When the agency who provided her - blames me and does not address that 'standard of care'

and so it goes on...and on...and on...and we disabled 'crips' sometimes 'allow' it. We do. (not all - but too many). We become weary of active challenging and prefer the quieter route of 'just let it go'. I do understand that. I seek peace and life. Activism is stressful, tiring and dispiriting.

If we are not vocal, active, campaigning, protesting, being part of the anti-oppressive movement we 'allow it'. Is there any choice?

If we are not 'crips with the whips' we allow it.

But our so called friends and families allow it too. the 'normals', actively ignore our reality (not all - but too many)

The TD's Ministers and Leaders construct it. Frame it, perpetuate it - allow it

Our institutions - hospitals, HSE primary care, Rail, buses, all 'allow it'.

We are a minority , oppressed group. We are discriminated against. its not my illness or my disability creating a less than fulfilling, living world - no - it has little to do with my impairments...and all to do with

the culturally, ingrained belief we are not 'worth it'.

we do NOT deserve equality
and you know what...

we don't have it!  

The Bedroom

I NEED assistance to live independently in my home. I NEED PA's - 'personal assistants'. I have a very good one Maria. not enough hours, but I like her, need her.

We get on famous and we have worked out a lot by now, about 4 years since she started.

But she took Christmas off and I was given a 'cover' PA. it did NOT work out ...at all. I didn't know her, she didn't know me. It just did NOT 'work'.

I am severely disabled. I can do nothing. I cannot make my bed, empty the commode, pick things up from the floor, hang up clothes, iron, cook, prepare meals, clean. I cannot do anything much bar use my computer and my voice!

I am accepting of that - largely - its not my 'fault', I have a neuro-muscular degenerative disease. This is my 'territory' now and I can't do much about it.

So a PA is vital. a good PA makes life liveable.

And the 'cover' PA was vital. as I had had no-one since the Friday before Christmas until yesterday. She was a nice woman, I'm not faulting her personality. I am questioning whether she really 'bothered' to do the tasks set.

PA's are trained - I think - mostly to fetec level 5 and I know my Maria has done a lot of courses to get to that qualification. Whether this 'cover' PA was qualified I don't know. but reality is, she didn't need any qualifications for the task in hand.

so lets look at that task.

The ironing was done...12 items - in an hour. she took an hour to iron 12 items... I had 2hrs of her time. I was going spare with her slowness.

I photographed the bundle done, sent it to my neighbour who does ironing for money, and asked "how long should this take? she answered 15 minutes.

 

After that, I said "can you see to the bedroom and make bed and empty commode - thanks (I always say 'thanks' after a request)"

That was surely clear?

so what did I find on entering my bedroom after she had 'seen' to it?

I took photos. Why? because I was distraught. because I couldn't do this myself...because I had had 4 hours sleep the night before due to pain. Because I'm on morphine...because I'm tired...

this is what I found after she had 'done' , finished my bedroom. She was now in the kitchen hanging up washing from the washing machine, I just went to the bedroom for something.

The bed looked 'done' but dishevelled, with a pillow at the end and a hot-water bottle there, un-emptied. I decided to see if she had actually made the bed or just merely pulled up the duvet.

 

this is what I discovered...underneath the duvet - yes, just 'pulled up' were my two comfy blankets, just as were left when I got out of bed. Simply scrunched up.  not touched, tidied, folded...just...left... My 'slippy (blue) sheet' which helps me turn over at night, was crinkled and a mess. (great for bedsores)... Pillows were askew.

 

This was NOT a made bed.

 

At the side of the bed on the floor I found the pink long sleeved T-Shirt I wore as pyjamas top, on the floor, with a dirty pair of knickers and the shoe horn which helps me put on my slippers.

 

 

Why oh why did she not pick it up - I can't. I have, as well as my neuro-muscular disease, severe spinal arthritis, and hip and knees all need replacing. I cannot, cannot bend down. I am in severe pain. I need her help.

Then I looked at the commode. emptied yes, but not covered and a loo roll was on the floor, I couldn't pick that up either...half under the bed. drawers were out. A mess.

 

On the low 'maternity' chair, a family item I inherited, were my clothes falling all over it, off it...and my sock gadget was on the floor, difficult for me to pick up. Nothing was folded or hung up...or put away... I had had no PA since the Friday before Christmas and that too was a disaster! (another blog needed) it was now 3 days since then.

Looking towards the en-suite I saw my pyjamas 'bottom' and slippers on the floor where I had to leave them on 'stepping' out of hem when dressing that morning. I get no help with dressing. Its all I can do to just strip and dress.

I was in despair. why did it 'get' to me?

why did I not say..."please can you do my bedroom PROPERLY"?  because I was exhausted, because I hate being 'bossy', because I am afraid of being called a 'complainer', because I know I will be blamed...because its simply easier to say "thank you" - not cause 'trouble' and just get her out of my house.

because I'm 'only' the 'service-user', because the agency might believe I am to blame, because I have no rights, because I'm now 'a no-body' but a disabled woman who should be grateful I got anyone at all!  Because I don't pay for this.

Anything goes.

Because I'm 'disabled', respect of me is immaterial, that my bedroom should be kept nicely, and my crap HSE bed, made comfy, is not priority. its NOT HER home.

its ONLY mine.   The disabled non-person.

I tell you about it...expose my bedroom...why?

because I AM human, because I do FEEL, because I deserve respect.

Because I feel we disabled people are made to feel as if our service providers do us a favour when, really, we should be dead. we cost money. care is not an option.

anything goes.

I tell you because it profoundly distressed me. I felt my disease had taken every part of my humanity. SHE had dishonoured me.

and I cannot say anything about it.

I am 'not allowed'.

 

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...

"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!

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.

 

 

 

 

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.