'Strong Arm Uppermost'

How do we 'hang on' when all around you seems chaotic, collapsing, depressing and overwhelming?

we remember little phrases that keep us going ? "never give up"
or something someone said to boost our morale?
or gifts given us? Mousy.
or family historic crests and motto?

I have two things hanging on my wall. a small wooden plaque with the Kennedy Clan's crest.

and wooden spoons

These mean a great deal to me. The wooden crest plaque belonged, I think, to my dead sister. So it has a poignant memory for me. but its more than that.

See that arm holding a sword above the helmets? that's a held aloft arm...ready to do battle, held high, sword at the attack-ready, to strike down the foe.  The Kennedy motto is "strong arm uppermost". Yea hey!

I entered life a vulnerable baby, I had a difficult family life. I had to survive. I did NOT "raise a strong arm uppermost" , I was not able. I was afraid, I was fairly crushed. I left home age 16 - weak, naïve, with no life skills to protect myself. There was no sword in my hand.

But I was given a sword. The sword of justice-making. I found my place, my job to do.  I was given it by survivors of abuse, by feminists, by friends, by deaf children, by disabled children. They made the sword and gave it to me. I used it.

The two wooden spoons are very funny. When I graduated PhD and again on my retirement I was 'presented' with a wooden spoon. It flummoxed me considerably. "huh?" "wooden spoons"?

I was told "yes, because you stirred the shit" !  And there was shit to stir in the child abuse, disability abuse, clergy abuse, professional abuse, woman abuse field that I spent over 30 years tackling.

I made some inroads, I made some changes, I got abusers found, jailed, un-frocked...I saved lives (this I know) , But there was shit to stir to achieve it! Hence the wooden spoons.

Once I asked someone who arranged for me to lecture to a large audience and her reason was "Because I know you'll shake the complacency" Yeah true, I'd boom, I'd roar, I stirred ....I'd tell them to get off their ass and DO SOMETHING.

I wasn't afraid. I wasn't mealy mouthed. I stirred. Because there were people needing protection, safety, help and healing.

I was a shock to the audiences I 'stirred'. They'd never had a lecturer so 'loud', so...passionate...so challenging. I had a colleague who used to say "I'll give you a mars bar if you don't swear"...for fuck sake! I was saving lives here.

These days I don't hold a sword, or wooden spoons in quite the same way. A weariness has crept in. I'm old, sick, disabled. I hold walking sticks.

But I do keep trying to challenge. to stir, to change, to save lives, to make a difference. Its in my blood is 'Justice-making'...in my Blood.

Thank you Sam for reminding me.

My Friend Died this morning at 7am

My best friend of 48 years - Rachel

 

I have just returned from London UK after spending two days with my best friend of 48 years , she lies dying in a hospital bed. She was emaciated, hairless, vomiting, and very, very pale. She was blind in one eye already with dangers for the other eye.  due to tumours in her brain. her tumour inside her heart grows (very, very rare), she is breathless, her heart is in disarray.  She is dying. everything has simply gone AWOL. There's no more Hope.

She had a standard pale blue hospital gown on and a stupid soft pink hat to cover her bald head.

She lay on a plastic mattress covered with a sheet, plastic pillows covered with pillow cases. she complained of feeling hot. On the hottest weekend ever for the London marathon. (she asked me was Mo running!). My friend asked me to wipe her with wet towels, fan her back with a wee whirly fan, keep her cool just as hospital plastic was keeping her HOT!  She said "thank you Nurse" and added "you've not lost your touch". I said "nurses never lose their touch".

I longed to see her in a beautiful gown befitting her beautiful life. I longed to see her in a beautiful headdress, like a crown of glory. I longed for her to have  a wonderful bed devoid of heat generating plastic. I longed for her to be comfortable.

The nurses were wonderful, absolutely wonderful. Their words comforting, real, supportive. No criticism there. it was just the little details.

I spoke with her, she answered weakly, slurred by morphine and a loving friendship was recalled. I held her arm, as her thin, very thin hand clutched a small bottle of water, which she swigged occasionally, then vomited it up, She was offered an NG tube, I asked "what is your answer to that" she replied, ever so quietly, with full knowledge "its traumatic putting it in...I'll think about it".

We remembered...I thanked her for 48 years of fierce support and friendship, how she saw me through 'thick and thin'. I told her she was my 'best friend'. I told her I loved her.

She told me she was 'at peace'. She didn't want people to be upset. She mentioned how I transcended my early adult life hardship and how the pinnacle of my life was my PhD. She told the nurse, proudly, with awe "She has a PhD" as she lay with closed eyes weakly and pale on her plastic pillows.

She was proud. I was crying. She always supported me. I love her dearly. She could do anything. Sew, cook, carpentry (she made cupboards, beds, shelving,) she could paint, cook, dress make. I laughed at her once ; "you make me sick!"  she asked 'why', I relied; "you can do everything".

She is a staunch Christian. She lived and worked through the lens of loving. She taught refugees English. She cared for disabled children. She supported several sick, disabled adults. Her Christianity was real, not 'pretence' at love, she really did LOVE people.

How did I, a severely disabled sick person in a wheelchair get to be at her bedside? I can tell you something.. not with ANY help from the HSE.

It took every ounce of physical strength I had to get there. With a neuro-muscular degenerative disease , in a wheelchair, age 65, on morphine - how was I to travel to London on the hottest weekend for years?

With great difficulty. my twin asked the head of the HSE CHO6 if help could be offered by way of  PA. (Personal assistant) to travel with me. She directed her email to a lower minion who replied ...This is not something we can support unfortunately. It is outwith the bounds of the care plan and foreign travel would be extremely unusual for a PA

This man had no idea about how disenabled people DO go outside Ireland with PAs. Has no idea of how 'self-directed personal budgets under the independent living' schemes allow our freedom to do things 'normal' people do.

For him it was almost outrageous that my twin ask for an emergency, compassionate PA provision so that I could travel to the UK to be with my dying friend. How dare Ann even ask. 

In fact he simply didn't care at all. No attempt even to get some extra help inside Ireland. Help to plan the journey, get packed, take me to airport. NONE.

I had no allocated PA hours on the Friday I left. I had to do everything on my own. stumbling around my house. on weak , diseased legs. Crying with exhaustion, frustration as I dropped things, couldn't find things, couldn't lift things.

Crying in frustration as my mind couldn't 'keep up' with getting fight tickets, hotel booking, renting a powered wheelchair in London. Getting care for Molly - my dog. As I struggled, I got more and more exhausted and more and more distressed.

He said it was 'outwith' (A Scottish word meaning 'outside' - the man is Scottish, or English...at least not Irish. )  'the care plan'. What 'care plan'. I have no 'care plan'. never did. That is the problem.

No help was offered to allow me go to sit by the side of my best friend's dying bed.

NOT ONE SINGLE HOUR OF EXTRA HELP as I cried in despair over my dear, dying friend.

This is why I have no Trust or Relationship with the HSE.

Care is not their remit. Their remit is 'not spending money'. Be damned with the sick, disabled, older woman needing help. Be damned because she asks for the HSE to help her.

You are abandoned on the slag heap...there is NO humanity in the HSE. None whatsoever.

I got to London. My neighbour came with me. dropped all she had to do ...because SHE saw the human need. She had 'soul', 'heart' .

My dying friend asked me to 'stay'. She asked me to 'stay'. her dying request. I could not. My neighbour had to come home. I could not stay in London without a PA.

I now needed a helper. I can no longer do anything on my own. I had to come home last night.

I said good-bye. I told her again she was my best friend, I thanked her again for all her love. As I turned for one last look at her , as I rounded her curtains, she was looking at me with a beautiful smile and waving good-bye. She looked happy. She told me my visit had 'encouraged her'. I told her 'Love you lots' as I tore myself away but wanting to stay.

I waned to stay....but I'm sick, disabled, need help and the HSE abandoned me. This is Irish 'equality' in action.


UPDATE:

My dear, beloved friend, Rachel,  died this morning at 7am.

The reason I was not with her is the HSE refusal to give me PA support to travel and stay with her.

I wrote this blog, now read by 290 people to honour my friend, to raise issues of dignity and compassion. Just as Rachel gave dignity & compassion to so many whom she 'touched'.

We were nurses together in Great Ormond Street Hospital : Still friends to the end; l-r Liz-Anne, Rachel, Myself-Margaret. picture take about 4 years ago.

 

Liz-Anne & me outside the hospital after my last visit to Rachel. I had to return to Ireland as I had no 'helper' to allow me stay.

I was bereft & heartbroken. I didn't want to leave her.

 

'Mousy' on the right Rachel made for me and gave me when I was 18years old. I took it to show her last week. she said with surprise "you kept him" , I replied "of course I did - you made him for me".

Irish Teddy on left, I gave to her on my visit.

 

Rachel was my best friend. A hugely significant person in my life. A solid rock I needed in my early adult life which I found terrifying and difficult.

 

She comforted me, stood by me, encouraged me and held me. She was my friend for 48years. She'll remain in my heart forever.

 

At the saddest, deepest painful time of my life - the need to be with her - the Irish HSE denied me.

 



I also  wrote my blog to highlight the utterly inhumane HSE approach to disabled people's rights to 'independent living' and how the HSE seek to limit our 'independence' even if you need, desperately need, to travel to a dying friend in the UK. To be with the one person who saved my life in my 20's. Who made my life bearable - because she said I was 'worth it'.

I do not enjoy 'independent living' in Ireland so how come I believed the HSE might have had compassion to help me get to my dying friend?  Call it stupidity. Call it my own understanding of love and compassion. Call it Trust!

What I believe now is that neither the HSE or the Irish Government truly wants us to be fully 'independent'. Or that the HSE is truly a humane entity. I was fool ever to think it might be or even could be.

Their sole purpose is to 'not spend money'. 'Save'. Contain us with 'power & control'.

Disabled people must NOT have Independent Living. WE must remain imprisoned by the Irish State. Make no mistake about it - we are NOT free.

I will campaign to the day I die to get freedom for disabled people in Ireland. So that we can travel to see our dying friends.



Update: Rachel's funeral was yesterday. I again asked the HSE for help to attend - no help - they don't have the funds to help me etc etc. So my friend in London asked the Red Cross to help me. they sent a lovely man to help me on the day of funeral.  BUT this did not cover getting to Dublin Airport - alone with taxi driver , on arrival I had to WALK to disability assistance office. I was taken to plane no bother but no help in the toilet.

on arrival in London got a taxi to friend . then later he drove me to hotel but I had to walk from his car to hotel desk, stand for registration as my cse on wheelchair, then walk to hotel room. I can barely walk now. it was terrible. I had not help all night, or getting dressed in morning or getting to dining area, partial help by staff & other patrons to get breakfast. Then the fire alarm wnt and a staff member wheeled me out. however when given all clear everyone trooped back in and I was left alone on pavement in wheelchair. luckily another person pushed me back in. Then I had to pack up my room and get myself to lobby. Mornings are dire for me. When the red cross guy arrived things improved. however there's no-way a stranger male red-cross guy was able to help me toilet!

the funeral was utterly sad. I cried buckets. buckets. the red cross guy was very kind. as were my friends.so the funeral itself was manageable. though having total strangers helping was difficult. I felt a burden as they mourned.

the red cross guy took me to airport and deposited me in the waiting area for assistance but there I was 'stuck' for two hours. no-one to help buy papers, drinks, go to toilet, etc. keep me company after the trauma of my dear friend death and funeral.  I just had to sit and wait for the assistance. ditto another two hours when brought through to lounge area. stuck in the disability assistance area. unable to do or go anywhere.

sometimes humanity is extremely limited. I was very lonely and exhausted travelling home. on arrival home I entered my house - alone - no-one to help.

certainly the HSE's humanity is non-existent. we are expected to live lives of sheer misery, with no help.

When does so little HSE primary care support become 'neglect'?

In my days as a Social Worker in Child Protection, of disabled children and adults in the UK,  I learned 'neglect' of children was ['here I use the Department for Education and Skills (United Kingdom)^[7] defined neglect in 2006]:

...the persistent failure to meet a child's basic physical and/or psychological needs, likely to result in the serious impairment of the child's health or development. Neglect may occur during pregnancy as a result of maternal substance abuse. Once a child is born, neglect may involve a parent or carer failing to provide adequate food, clothing and shelter (including exclusion from home or abandonment); protect a child from physical and emotional harm or danger; ensure adequate supervision (including the use of inadequate care-givers); or ensure access to appropriate medical care or treatment. It may also include neglect of, or unresponsiveness to, a child's basic emotional needs.

what if we re-wrote this for disabled adults, or even disabled children actually,  and applied it to the Irish State's & HSE's failings to support which I contend is abuse. I say we need to call abuse abuse and 'neglect' is abuse.

Lets change the word 'child' to 'disabled person' and lets see how that fits!

1. ...the persistent failure to meet a disabled person's basic physical and/or psychological needs, likely to result in the serious impairment of the disabled person's health or development.  

think about the refusal of appropriate wheelchairs, denying independent living, denying physiotherapy, speech therapy, psychology, surgery, and all manner of therapies refused or not provided that are necessary  

[Neglect ...].  

2. Once a disabled person is born, neglect may involve a parent or carer [read also HSE ] failing to provide adequate food  

think about poverty level benefits/income leading to food deprivation,  

   3. clothing and shelter (including exclusion from home or abandonment);    

think about appropriate housing/putting into a nursing home, confinement in residential care  

 4. [failing to ]protect a disabled person from physical and emotional harm or danger; 

think about nursing home abuse, abuse in own home, carer abuse
Think also of emotional harm caused by battling for HSE services

5. [failure to] ensure adequate supervision (including the use of inadequate care-givers);

think about poor 'care-givers' , inadequate hours of support

  or  

6. [failure to] ensure access to appropriate medical care or treatment.

again think about the refusal of appropriate wheelchairs, denying independent living, denying physiotherapy, speech therapy, psychology, surgery, and all manner of therapies refused or not provided that are necessary

think about consultants who do not 'treat' you because you are older or disabled

7. It may also include neglect of, or unresponsiveness to, a disabled person's basic emotional needs.

think of HSE refusal to respond, listen, or provide adequate services causing stress, depression, harm. Breakdown.

Double Standards/Hypocrisy

It never ceases to amaze me that the alleged care services benchmark of 'professionalism' is so dangerously low as to constitute 'neglect' which is 'abuse'.

It never ceases to amaze me that when we see a parent or care-giver do something that constitutes abuse/neglect we take action, but if a member of our State, or HSE do the same we allow excuses  and accept those excuses. Usually under the rationale 'not enough money'.

But isn't the 'benchmark' NOT 'we cannot afford' but rather 'do no harm'. Do not either cause harm or allow it.

why do we not call State or HSE neglect/abuse ...er...neglect and/or abuse?
why do we sit and watch it ...but do nothing?

if a parent/carer did not allow a child/or adult to use a needed wheelchair we'd call that abuse...although I have known professionals to overlook this on the grounds of 'parental choice'. As if this was an area where parents should chose. In my books its not!

yet we say its perfectly ok for the HSE not to provide a needed wheelchair to a disabled child/adult.

if a parent/carer consistently did not take a child/adult to their needed physiotherapy appointments we'd be saying 'neglect/abuse' . Though again I've witnessed professionals overlooking this because parents/carers are stressed etc. Professionals 'look the other way'.

yet we allow the HSE NOT provide physiotherapy or other therapies needed on costs grounds. No issue about neglect/abuse is raised.

Where is the real problem?

We allow abuse and neglect in Ireland. HIQA spots that on a daily basis.

We allow disabled people be neglected and abused.

We allow it in the disabled person's homes when professionals fail to act - 'feeling sorry for' the parent/carer who has so much to deal with. Their child is a 'burden' so professionals 'understand' a bit of neglect!  (HUH????)

We allow it in institutions, we allow it from our service providers.

 We just do NOT look at the lack of HSE services through the lens of abuse.

The negligent provision of services is NOT abuse (even though it causes profound harm and distress) its allowed under the clause that the HSE use frequently...a service is provided taking into regard resources.

Its not based on need, nor harm, or risk to the disabled person.   For the disabled person has no 'place' in society. the disabled person is an expensive 'defective'. We allow no services. /poor services.

we allow HSE scapegoating, blaming the disabled person for even asking. Or complaining about poor, negligent care/services.

we allow, in Ireland, abuse and neglect of disabled people from....everyone...including the HSE.

We allow it....