Hugging a crip! Royal training! and a Pink Flamingo

So, as an Irish woman who is a wheelchair user I'm well used to patronizing shite in the public space.

I'm used to the 'look' of passersby who convey 'Oh God poor you' on their faces and seem to feel they need to 'award' you with that caring, saccharine smile, after all - you POOR, POOR Crip!

I'm used to being given the change left in the slot of snack/drinks machines

I'm used to having people lean on my wheelchair as if I'm there as some prop for their weary body.

I'm used to the politicians photo op with the Crip outside Leinster House. Its good media - for them.

I'm used to 'freebies' - "Oh no don't bother - I've paid" , when all I want to do is scream "I can sodding pay myself you ableist prick".  God. if I said that, I'd be rounded on as a very rude, ungrateful crip!  Not exactly 'understanding' that my position in life is to praise all good deeds of 'normal' people towards us crips.

In fact in the last year I've been hung drawn and quartered for arguing Charities should be banned, 'special-needs' as a term for disabled children should be banned and that disabled children should not have to use an accessible swing fixed facing a brick wall! (I was banned from a community forum for saying that).  How dare this crip offend non-crips doing good deeds.

I'm used to being screamed at for challenging non-disabled people parking in blue badge parking spaces. (How dare I challenge a non-disabled law-breaking person!)

I'm used to our health service - the HSE - treating me as if I don't have Human Rights at all - and particularly not a right to health care!

So I can safely say - as an ungrateful crip  - what I'm now going to say will be equally greeted as a 'crip-with-a-chip' outburst.

The Royal family in the UK are training their sprogs in ableist behaviors very, very well. Congratulations. Isn't it so NICE for a 'wheelchair bound woman' and 'wheelchair bound twins' to be given sweet little hugs from the Royal family's tiddlers. Wasn't this the cutest thing the poor crips could get? Oh soooooooooooooooo sweet!

https://www.dailymail.co.uk/video/royals/video-2076434/Video-Adorable-moment-Princess-Charlotte-hugs-wheelchair-bound-royal-fan.html

Weren't the crips honoured by the Royal Sprogs who dared to even touch - (Oh God - did they?) Yes, they DID, they touched those disabled commoners!  WOW! WOW and WOW, WOW, WOW!

And WHO, may I ask , decided 'all crips to the front' at Sandrigham, just so photographers could get this coup of a pic 'a Royal Sprog hugging a Crip'?   Stage managed patronizing shite.  Its called exploitation. USE those 'poor' front rowers for a good publicity shot. Make absolutely sure the Royal tiddlers are pictured doing their Royal 'DUTY' so everyone knows they be GOOD Royal ableists.

Its true, or seems to be true, the disabled Royalists seemed to get a great buzz out of Royal Sprog hugs...I personally would not put myself in that position. I would not ALLOW myself to be used to promote ableist Royal agendas or anyone else's agenda.

No-one is allowed hug me so they can somehow work through their charily on any given day, no matter how Royal or 'Stationed' person they be. I'm hard pressed to lick anyone arse if truth be told and I'm punished for not doing so.

I'm not blaming the Sprogs - they are being 'trained' like little dogs to do ableist things. They don't understand the rules from our side of the fence. Or rather from those disabled people's side of the fence who have 'seen the light' of the ableist agenda. For not all disabled people see it. The light switch has not been triggered.

I feel like going to the woman who gave away her lucky pink flamingo to a Royal, privileged sprog because 'Oh God the Royal Sprog was so 'nice' to me!' and trying to switch on the light bulb... Well it was a nice thing to do....to give sprog the pink flamingo,,,yes...a nice thing to do.... but why? It was YOUR lucky pink flamingo.  YOU loved that Pink Flamingo....

Its a very sad day for Disability. a sad, sad day. How a HUG of disabled people by a Royal Sprog is seen as the best bloody thing since fried bread. Almost a miracle.

and, lets not forget, it was the Royal Sprog's 'firm' who knighted IDS for killing British disabled people through benefit cuts. 

https://www.theguardian.com/commentisfree/2019/dec/29/iain-duncan-smith-knighthood-welfare-britain

So Royal 'messages' abound this Christmas for the brits, and disabled brits... all you'll get from Royalty is a hug and you'll lose your favourite Pink Flamingo because you won't know... They don't really CARE about you. Its simply the Royal Christmas 'show'.  A publicity stunt !

The meaning of Christmas

There's one thing I need to say....Thank God Christmas is over! It's lost all its meaning for me.  Why? because I'm amongst the most oppressive people's I've ever had the misfortune to be amongst!  That includes almost everyone around me at the moment.

Ireland is NOT an un-oppressive country. NOT a disability friendly country...NOT a tolerant country.

It has a vile health support service (HSE Community)  and a vile medical Health service (Hospitals division) within which I struggle to stay alive.   As well as that a number of people (whom I won't mention) intent on trying to bad-mouth me and my twin simply because we confront injustice. Some of these people should be supporters but do all they can to annihilate us.  They are making a good job of it too. I feel rock-bottom emotionally, psychologically and completely exhausted going into 2020.

I tried to redeem the festive, spiritual meaning of Christmas; 'love' , at least that's what I thought it meant!  So what did I do? I gave my Christmas spending money to a local domestic violence refuge. I gave small boxes of chocs and a 2 euro scratch card to most of my family (except twin - whom I always give bigger!)  explaining the rest of the money was put elsewhere this year.  Of course my donation to the refuge is not nearly 'enough' to solve domestic violence, but I know it will help some.

I think people spend too much money on what? frivolities and waste. When I hear a person I know gives her children presents to the tune of 600 euro EACH I was in shock! When I heard that an old woman in her 80's gave her grandchildren (whom she never sees) 2,000 euro EACH I was again appalled!   This is NOT Christmas. Its what its become. a commercial gluttony of selfishness and greed. Where some very sad people, lonely people, alone people TRY to buy the love THEY need and don't get!

I wrapped my Christmas presents in brown paper. Thinking I suppose I was saving the earth and following Greta. (Christmas wrapping paper is not recyclable) . Yet knowing that's a gesture rather than a solution. But what can the lone person do?  We can do more.   I will do more. I intend to do more to save this planet. When half of me thinks - why bother? its a corrupt and horrible place now. With Trump in America, Boris in the UK and Varadkar here in Ireland. All right wing, close to 'fascists'. Why would I save this planet these days? give me a real reason? 

I put up a crib. I'm still a Christian, I do believe. But I no longer go to Church . That hypocritical institution which has lost its way completely. My love for people surpasses that sort of Christian 'love' which is judgmental and often cruel if not abusive.  I left that idiocy years ago and I'm left with a warm inner feeling of God's love ....which I try to share as best I can. In my 'justice-making' endeavors.  In my opportunities, in my stance, in my rage, and through my voice and pen.

A little candle by my home-made crib suffices as a reminder. I light it every morning.  I think there of my deceased friends, especially Rachel and Geoff and my deceased family members and love them. I think of those cruelly hurt, injured, wounded by hate, abuse and families and society that don't care - really care. My tears go there...daily I have tears for the loss...of everything. Goodness, Love...support...

Rachel my dearest friend who died in 2018 

Me and Geoff who died in November 2019 just gone. my 'brother'. 

And in my hurt I will hang on to good people around the world....

My twin Ann in Ireland..fighting medical injustice valiantly. Fighting ignorance and cruel people.
Thea in Australia ...demanding climate change , getting arrested
John in Scotland fighting disability injustice, fighting a right wing shift in politics in London - Boris -that threatens lives...
Col in Liverpool supporting survivors of abuse
Merry in Reading, UK fighting disability hate, Tory policies and racial hatred..
Good journalists like John Pring...always bringing into the open disability hatred and abuse
ditto, Patsy McGrarry, Joe Little (RTE - just retired) and more. I wish Mary Raftery was still alive....miss her dreadfully.
I think of good people like Mark, my friend who stands alongside me Jenny, Liz Taylor (Geoff's wife - suffering unbearable grief), Helen, ...and more
I think of good doctors like my gastro-enterologist Dr Garrett Cullen, Dr Toro of NIH America, Dr Gahl of NIH America who cared for Ann and I recently. I think of the whole team there.
I think of the GOOD people fighting a crap medical system ...Christine fighting for ME patients in Ireland
People in Ireland with mitochondrial disease with no where to go...
people in Ireland with neuro-degenerative diseases...barely supported...
people in Ireland with Rare diseases and getting little or no help here in Ireland
People fighting to improve services for disabled people in Ireland Bernard, Sean O'Kelly, and others...
I think of the wonderful MS Respite care centre in Rathfarnham where Ann and I go twice a year...wow a beautiful place.
There are GOOD people, really really GOOD people out there.

in 2020 I'll find more. I'll join them. I'll ease my sore heart and soul and I'll do my best to LOVE...really LOVE others.

Try it. Its good to do. ban all hatred. ban abuse. ban horrible words, deeds and notions.

SAVE LOVE. Its a dying emotion. its needed.

Defeating State/HSE oppression .

I am a weary woman. I seem to have spent the last ten years trying to single-handedly  change Ireland! I have NOT actually been alone I hasten to add....many a time outside Leinster house (Ireland's Government house)  we disabled people together have gathered to protest. But it FEELS like I'm alone. It feels like a very lonely place.

 we need more of THIS

How do I view Ireland?  Oh, my, ten years ago I chose to come back to Ireland to retire here. I didn't KNOW how difficult it was for sick or disabled people. I didn't know my love for Ireland would turn into a kind of hatred. But its not even hate - it's more like a sense of loss. 'let-down', shock, bewilderment.

I've always been a bit unable to understand nastiness, people who hurt and damage others I can't compute. Particularly those in positions of trust and power...doctors, legal bods, nurses, police, teachers, clergy...anyone I might have thought 'good' . When they turn nasty I have the visceral response of a child...complete incomprehension. how can they do that? how can they sleep comfy in their bed at night? it really does confuse me.

Over the last ten years I've had to deal with a health service from hell - the Irish HSE (health service Executive) or CHO6 to be precise (Co Wicklow) . I'm still reeling from my shock at the relentless abuse and neglect that the HSE perpetrate against sick and disabled people. Against me, against my twin.  If the same behaviours were perpetrated against us by staff in a residential institution - HIQA and police would be involved! If family or carers were doing it, someone would report to client protection bodies, or police. But living in the community with almost daily harm perpetrated by the HSE brings no action whatsoever. NADA.

I am still reeling from reading reports and comments designed to slur my name and my twin's name - and reputation. Reports that are far from TRUTH.

Still reeling from how the HSE constructs reality like a pathological psychopath - with no feeling or sense of love whatsoever. They have honed their 'voice' in such a way that disguises the reality. Their 'economy with the truth' is pathological and constructive. It works. For example letters to TD's or government Ministers suggest all is well, services are up and running, implemented, working and they are doing EVERYTHING they can to make my life easier!  Well, I know what they say is pure fabrication. Written by managers trained by solicitors to deny accountability or save money.

They write bullshit and I've been told by many TD's that they don't believe a word of what any HSE manager writes to them. BUT....and here's the sting, TD's love these letters because it means they can construct the constituent as either wrong, bad, ungrateful, mentally ill or devious and HSE is right and therefore they need do nothing. If the HSE says services are available - services are available - period!

So our politicians want it this way. They are complicit in our oppression.

Which means we poor sick and disabled sods spend years beating our heads against a brick wall, only injuring ourselves not them. Torture is based on denying reality. Tell a person that the colour of the cat is blue just as the person knows it's black over so many years will result in the person either going mad or believing , yes, the cat IS blue even if they know there's no such thing as a blue cat!

So what are we to do in the face of HSE torturer's, maliciousness and nastiness? Here are the options:

1. Do nothing. Suck it up , acquiesce for a quiet life (but no services) .
2. Keep HSE happy - like a domestic violence victim tries to keep her partner happy to avoid being beaten . We all know where this leads ...years of abuse, often leading to death.
3. Challenge 'nicely' - this amounts to grovelling, begging, pleading - and is exhausting and doesn't work.
4. Challenge strongly - take no shit and tell them you won't. Likely to get every HSE official ganging up against you, engaging in a 'group-think' about you and 'gas-lighting' you. And believe me no HSE person will back you up even if they KNOW you've been treated badly. More than their jobs worth. 
5. Go to solicitor - this costs money and many say you can't ever win with the HSE so don't want the job
6. Go to a TD - who is already 'infected' by the HSE's pathological mindset. They don't want to do anything and that's the truth. 
7. Go to a newspaper...this only works if you are a child or a very vulnerable adult . everyone else is viewed as not needing the help of media scrutiny.  furthermore this is only a brief 'one day wonder' and issues are quickly forgotten. 
8. Put in a complaint under 'your say-your service'...not much chance of working as HSE self regulate. The alleged 'investigator' of your complaint will be a HSE manager, often the manager of the person you are complaining about. 
9. Protest outside the Dail (Leinster House) can sometimes work, but it needs a good crowd,  but only a one day wonder - TD's come out for their 'poor crip - I support' publicity shot - but they don't actually DO anything to help the cause. (I've probably shaken the hands of all the TD's - or the key ones but never had ANY of them fight my corner! Never!) 

Being now weary - I can think of only one method to defeat our oppression by state agencies.

Massive disability protests where we need to disrupt, chain ourselves to railings, sit-downs and not move...I'm really tired of the how protests go. We need 'ACTION - NOT WORDS' and this means , direct action . DISRUPTION - a wee bit of anger - PROTEST.  Not criminal behaviour, I reject that, no, we must be within the law.

We need a group willing to be 'disruption activists' - for our cause.

but that DISRUPTION needs to be on-going. persistent and focused.

the political hug of a crip!

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

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

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

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

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

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

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

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

Are there no nice, welcome hugs? 

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

they are ok 

i'm off to bed. 

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

The Disabled person of Ireland

The Disabled Older Person of Ireland

Dr Margaret Kennedy magsken57@gmail.com

Disability activist/campaigner

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am proud that I do not do that! 

Victims of the HSE - Ireland

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Just WHO is caring for public patients in Ireland?

 

The Tea Bag did it!

The Tea Bag did it!  

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"Get me out of here"

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

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

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

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

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

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

We 'legged' it, distressed and upset.

 

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

and silently screamed "get us outta here"

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

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

 

he got us tea.

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

 

 

 

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

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

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

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

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

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

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

Jazus, it was a warehouse for the last days.

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

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

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

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

"Get us outta here"

the tea bag did it.

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

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

 

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

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

The tea bag remains a powerful reminder.

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

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