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.