'Your allocated 'role' as a Disabled/ill person in Ireland'

I have a progressive, rare neuro-muscular disease . I can walk with great difficulty but largely need a wheelchair. I find breathing, walking, eating, defecating, urinating, sleeping, nightmarish.  I can do virtually nothing without help.

Crossing the threshold from health to illness/disability is a threshold from respect to disrespect. No doubt about it after ten years of illness/disability I am under siege by my service providers trying to ‘beat’ me into a ‘role’ I did not chose. I have rebelled, and still rebel. It’s uncomfortable to agony of existence.

having a difficult test in the UK

 

 

The role is created/moulded by HSE service providers as well as Charity driven service providers for their benefit. Well, they can try, but I’m not one for moulding. I, for one have more professional expertise, achieved more, done more than any of these managers.

                              Speaking in the EU Parliament Brussels

But I have been forced to move from self – control, to powerlessness from employed to workless,  from sanity to insanity, from intelligent adult to childhood again.

I am expected to KNOW the rules of being sick and disabled.  If the HSE or Charities gave you a booklet of those rules and honestly told you what they expected (as opposed to the guff of policies containing brilliant expositions about ‘client-centred working’, listening to the client, working with, partnership with the client – all lies, all gloss, all fake), it would read thus…

(Italicised my responses)

Introduction:

Welcome to the land of the failed bodies. You have failed to stay well, failed to work, fail to earn your income, failed to look after yourself. This failure now renders you at our mercy.

What we provide is out of the good will of the tax payer (who resent paying taxes and the rich don’t) so we have to honour the well people who don’t really want you here, alive. You are now a burden on the state…you have failed.

This means we can only offer what we deem necessary. We expect you to be grateful and joyous as we shore you up as a failed citizen.  You have, after all, plunged this state into the economic mess it’s now in.

Anything you achieved before now does not matter. I care not the good you did, or the skills you have. This is now all DEAD. It matters not.

Rules of your position.

Respect

Please note any worker allocated; you must respect.  (well, I’ll go with that 100%, I’m all for respect - It’s the definition of respect I take issue with. It’s NOT about enduring every shit thrown at you by the worker or manager. More anon.)

Manner and presentation.

You must be courteous, not critical, Calm not irritated. You must NOT complain about ANYTHING. You must NOT shout, lose your temper, get angry, feel frustrated. You must be the perfect, long suffering ill/disabled person. Even in dire pain, even in dire distress, even in dire frustration, even in the face of abuse against you. You must be grateful.

Your illness/disability cannot be used as an excuse to deviate from total, unconditional care of your worker. The ‘care’ you are to offer THEM is regardless of their way of working, regardless of deficiencies or lacking in skills, training or resources. As a person we now control, because you have lost your power to control, we call the shots.

(Well this script has gained strength in the climate of austerity. It is un-manageable when ill, depressed, tired, isolated, trapped…and all things illness or disability can bring. It is un-manageable when the service you need to live a bearable life is not given. It is un-manageable when your illness completely defeats you.) 

Complaints.

You are NOT allowed to complain, regardless of any harm danger or neglect you experience from us.

We ARE allowed to complain about your behaviour.

All complaints will be investigated but be mindful that we know how to deal with complaints and have legions of lawyers and barristers in our complaints department. Furthermore we deal with complaints ‘in house’ so you haven’t a hope in hell, of any objective, professional, independent investigation. We have honed our defence skills. Just don’t even try complaining. You’ll get no-where.

Oh and don’t go to politicians, we have them wrapped around our little fingers and we can easily persuade them of our righteousness over your complaints. 

Multiple complaints will automatically be deemed ‘vexatious’ under our vexatious policies. Furthermore we will not inform you of the vexatious procedures, and will deem you so without informing you or allowing you any representation.

(This I know. Bitterly fighting I have been deemed a vexatious complainer, a serial complainer. But I have been vindicated. An ombudsman investigation upheld my complaint over being called ‘a serial complainer’ I was cleared and the HSE were told to apologise and clear up the mess. They’ve apologised but NOT cleared up the mess. )

 The essence of such a booklet is to put you firmly in the ‘down’ position. The powerless client; the always grateful ill/disabled service recipient. The moulding of your ‘role’ is viciously carved into your very being, from day one.  

Take some examples:

Powered wheelchair provision.

You must only ever accept, expect, second hand crap. You cannot expect either a proper assessment of your needs or a decent new powered wheelchair.

          Part of a delegation of wheelchairs users speaking about crap wheelchair            provision in Leinster house. Did it make a difference - not at all!

These are deliberately NOT provided as they will make you MORE powerful, which the system does not want you to be. They cost money too, and you as a failed normal person, have no rights to ‘decent, new’ wheelchairs.

The system of the ‘well/normal’ has allocated you your role and position.

Imprisonment of mobility is your role. And you are expected to accept this. You have no rights. 

Ha! Ha!  We’ve not ratified the UN convention on rights of disabled people (UNCRDP)….deliberately…Ha! ha! Don’t even try the ‘rights’ tack!

                         Yes...we do try the RIGHTS Track - OUR RIGHTS! 

 Transport provision

The fact buses, trains and DART, aeroplanes, taxi’s,  still don’t ALLOW disabled people travel on equal terms as non-disabled people matters not much to transport companies.  The fact the mobility grant and Transportation grant was slashed is not viewed as a human rights violation. Even though ‘freedom of movement’ is a legislated human right.

You have your role, you see. If we provide, wonderful, if we don’t, tough shit, as a ‘failed’ walker/normal you can’t EXPECT equality of transport. You must go through the hoops of our generosity to get anywhere.

As for transport to hospital appointments; well, that’s your responsibility not ours. Even if we have failed to provide public transport that accommodates your powered wheelchair, you are responsible for getting to hospital.  Even if on a meagre disability pension, you cannot afford the 80 euro round trip to the 4 appointments per month, on average, you are still responsible for getting there.

It doesn’t seem to be noted if I get sicker by missing appointments; it’ll cost more to the HSE budget!

Personal Assistants

The whole ethos of providing a personal assistant (PA) is based on ‘generosity of charity’. It is NOT based on trying to make your life equal to others, or offering opportunities for full inclusion into life, work and enjoyment.  We are NOT obliged to do that since…HA…we’ve not ratified the UNCRDP.

You are NOT in control of your PA service.

PA’s are there to prevent further expenditure on hospital or other community budgets. It’s a win-win for service providers, economically. This being so we ill/disabled people in receipt of HSE or Charity PA’s have no rights about how THEY work.

You are continually reminded of this generosity and this being so; you fear the generosity will be removed. So you fall into subservient silent role very quickly.

·        You don’t question, overly, practice (this is a complaint which you are not allowed to do), you don’t ‘tell’ a PA what to do or how to do it…this is being too bossy for the generosity on offer, too ‘powerful’.

·        If your PA choses to spend 10 Minutes of your precious hour on her mobile phone you cannot complain.

·        If you find her engaged in a conversation over the garden wall with a neighbour whilst ‘working’ for you, you cannot complain.

·        If you find in the supermarket they’ve taken 10 minutes of your shopping time to do their shopping you cannot complain.

The situation is more perilous if your PA is a non-national. For complaints are then considered potentially racist. I was angry with my (stand-in) Nigerian PA today and she accused me of ‘treating her like a slave’; a remark that utterly horrified me.  But is an effective additional weapon in the continual ‘war’ between ill/disabled person and ‘generous’ ‘well/normal’ service providers. I found the 'slave' comment abhorrent. The fact she was black, Nigerian had nothing whatsoever to do with the situation. She was using MY precious allocated time to talk to her children! She was working.

Why was I angry, because as I was looking for a lost purse, with money and credit card and frantically trying to get out shopping in the hour she had to help me…she was on her mobile talking to her children.

PA’s are not allowed use a mobile phone at ‘work’ (but it’s not really work, its generosity so she can do what she wants. I don’t pay for this directly).

I was exhausted after Christmas. I can barely keep up and running around my bungalow looking for my purse, on legs with muscle myopathy was a very, very difficult, distressing task. I just could not do it and was distressed, close to tears.

But if I complained…well I’m not allowed complain.

For any sign of frustration, illness, tiredness that causes you to be irritable, grouchy, or otherwise ‘shouty’ to your PA you are deemed ‘aggressive’. This can even be ‘upgraded to ‘violent’ at the whim of a PA or manager of PA.

Its perception you have NO CONTROL over. And who is ultimately believed?

[NB I’ve never been accused of being violent – but have been accused of being ‘aggressive’! Now I’m probably racist for shouting at my PA today. It’s utterly exhausting defending yourself. ]

You have to be in perfect, pleasant, nice mood endlessly (even in the face of poor or shoddy work, or pain or exhaustion). You are NOT ALLOWED be sick.  The strain of this ‘pretence’ is enormous.

If your PA should cause you harm (whether deliberate or not) in any way, either sexual (a case I have been told about) or damage to your person, a fall due to lack of care…you are in a dire position. Do you, or do you NOT complain? Will the service be removed as you’ve become a ‘complainer’?  Yes, it will…and if removed the next PA is cool to freezing in mood and relationship….for causing a mate ‘trouble’. 

You cannot just sack ‘em and hire another! There are serious ‘repercussions’ in complaining about a ‘generosity’ service.

You have questioned ‘generosity’, overstepped the subservient, controllable role. This is a ‘dangerous’ client, who might ruin the reputation of the agency providing the service or a PA’s job.

Conclusion.

Here lies the awfulness of illness/disability in Ireland. You have no rights, you have no say, you are not treated as ‘equal’. By definition as a client, or service user you just are expected to put up with every bit of shit thrown your way. 

The HSE/Charitable mafia have ways of bending perception to demonise you if you step out of ‘role’. You have no power and no-one, no-one, not even the press (owned by mega rich government friends) or politicians (not in the job for your benefit mate)  or the few well-meaning charities, who do try to respect you, will support you as they feel forced to compromise and walk the other way in any dispute. Why? Because they are largely government/HSE funded organisations. Who would bite the hands that feed them?

NOW ask where is the fighting disability ‘movement’ in Ireland?  Oh we do, small groups, protest outside the Dail from time to time. Its always useless! But at least those of us who turn up are still fighting.

Largely, however, the disability 'movement' has been crushed by the political and HSE /Charity mafia triad of oppression.  There is now no ‘movement of disability resistance’.

It’s exactly how they want it.

Where does that leave me or my fellow disabled/sick brother or sister?

Not in a great place I can tell you!

                                           Not allowed in the FRONT door!

 

The Meaning of Love & Care - a reflection

Christmas 2015 is over, at least the day 25th December, is over. Some might say; "Thanks be to God", Others just sit back and ponder another day and year of rejection, lack of love and care in a world that's becoming increasingly about the 'haves and have not's'.

The 'have not's' relegated to shouldering the blame as "benefit scroungers", the refugee as a "terrorist", the homeless as merely lazy or scum. That's how they say they feel when the homeless beggar see the distaste or rebuff on the person's face as they walk by.

Sick and disabled people, or old people feel forgotten, feel abandoned even by their government, especially by their government as they experience cuts that savage any sense of 'self-respect', hope, self esteem or just a reason to live.  When their experiences are 'air-brushed' out of societies consciousness. When mushrooms and trees become more important than a wheelchair.

3,000 people who are poor or homeless were fed at a giant Christmas Party in the RDS , Dublin, Ireland. a fourfold increase over 4 years. Many smaller community initiatives around Ireland also took place.  Did participants feel loved and cared about or did they leave feeling "OK...so what happens the other 364days of the year?"  Did they feel; " Yeh well, good on you, 'do-gooders', you'll leave me starving, cold, hungry, isolated the rest of the year".

Will we blame them if they are not grateful for the crumbs from the table? The tables of the have's.

I'm thinking of this as my yearly 'effort'; the 'St Crispin's Care Crib', a little venture I do every Christmas to raise food, clothing and toys for local families in need or groups in need was a great success. Am I just the same. My once a year tokenistic effort to ease the plight of so, so many?

In truth; sadly, partially,  yes...but its not tokenistic. I hope. As a sick and disabled woman myself, I can do little to dent the depth of deprivation (physically, by getting more involved) in Ireland. But I do, daily campaign, protest, and raise the issues. I do daily 'represent' those of US, yes US, who live lives on the margins, in great emotional and psychological pain.

I too have had cause to feel rejection, unloved, uncared about. To the outsider, even to my family, this does not seem evident.

But when my reality of a rare, unknown about, neuro-degenerative, progressive disease and subsequent disability is not allowed to be spoken of at all, let alone to family members (whom I never much see the rest of the year), around my family Christmas Dinner table, this tells me only one thing....what I experience and know, and watch happening around me to others, is a taboo subject. Its the secret. the invisibleness of total rejection of who I am and what I suffer. An endemic cultural rejection played out in most families in Ireland.

Its taboo to ASK me how I am, it's Taboo to ask what happened when admitted to hospital in Newcastle, UK earlier this year, (they still don't know), it's taboo to ask how my degenerative disease is 'getting on' , what tests results are back? if I'm coping, what it means, have good doctors or ask; do I need anything.

It's taboo for me to say I had done a university course on the assessment of Posture, Seating & Wheelchairs" in Limerick University (because I was given a crap assessment and wheelchair by state HSE services) and that I was graduating at the end of January, gowns, mortar board, the lot! Well I did, but got quickly shot down by a family sibling when her son showed genuine interest in what I had done and why. "We won't talk about that" , said by my sibling matriarch of this family, just reminded me of my 'invisibleness within the fabric of my family.

Many might say; " but,  Margaret ...not at Christmas! Not around the Christmas dinner table".  Well, why NOT?

This takes me to what it means to Love and Care. What it REALLY means to 'Love and Care'...for me it means this...

Its when you ARE asked about your life, when people ARE interested in what happens you, good and bad. When people DO listen to what your real, daily experiences are like and actually DO care. Its when people DO genuinely remember I have (as well as my twin) a rare, progressive, neuro-muscular disease and that I don't have to pretend that life must be lived as if it didn't exist!   Even on Christmas day...especially on Christmas day.

Dealing with this disease is life-consuming. There is almost no room for anything else. This is NOT a sob-sob scenario. This is trying to live in an environment and culture of austerity, with blame and silencing of the marginalised. The macro scenario at the RDS 3,000 feast and the micro scenario of the Family Christmas dinner should not 'photoshop' the picture of loss, grief, hardship, suffering out of our lived lives.

If those closest to me, my own family cannot be part of that struggle, is it worth sitting around a Christmas table, celebrating a CHRISTIAN feast, where we are expected to pretend life is other than this?

When meeting others who suffer, daily, relentlessly, even at the jouous times of feasting and coming together some time should be there for asking the 'Love and Care' questions.

How are you?  What are you dealing with? Who is helping you? Do you have enough help? what can I do? These are the 'Love and Care' questions. But having said that, those questions are meaningless if you expect and hope I'll say; "oh life is OK, thanks" and that I move on to making YOU feel comfortable.  If that's what you expect......your Love and Care question is not genuine.

These are the community and family questions that are far more important than that dinner plate or gathering. and the dialogue that results could just be the healing you need.

Yes we can enjoy the meal, the occasion, no doubt about it. But it can only be 'enjoyed' if we deeply feel the hosts really do know our lived reality.

Too often the 'love and care' is edited....out and what remain are experiences that eat your soul, because the REAL food 'Love and Care' is absent.

This is my reflection.  Make sure when you meet suffering people, that you genuinely inquire about their suffering, otherwise its all superficial, all about pretence, all 'game-playing'. That is neither 'community' or 'family'.

Don't:

•  avoid the painful questions
• don't contribute to the taboos of silencing, not wanting (really) to know
• hear the answers (even if painful)
• talk genuine 'Love and Care'
• Respond lovingly not with platitudes or rejection of the experiences
• give a moment of your time to help in some way

and if the suffering person always talks of suffering...maybe that's all their lives entail. Relief is NOT from ignoring but in engaging and making their lives more bearable.

This is the language of 'Love and Care'. The essence of Christmas.

But a human is NOT just for Christmas, a human is for life.

International Day of Disabled People 3rd December.

Today is OUR day! Its not a day of pitying, (tragedy porn) charity or bleating "Oh Look, aren't THEY wonderful"! (inspirational porn).

We are not existing for YOU. For you to give your money to, to wear that little angel or daisy, or whatever, on your lapel to say to the whole world "hey, look at me, a non-disabled person, LOOK, I give to this charity, now aren't I wonderful, for supporting those poor, poor creatures?" 

Ditto Charity Christmas cards, "Oh look, isn't she/he wonderful she/he buys Christmas cards from ....such and such a charity - isn't that SOOOOO nice".

Its possibly the only time in the year that she/he has actually thought about a disabled person.

So do you detect I'm cynical, even angry, about how YOU may see ME! 

The present discourse around disability in a climate of austerity is that we cost money.  too much money. We get too much so there is a need to cut what we get. Well actually most disabled people in Ireland exist under poverty.

So whilst Joan Burton shouts how the economic 'recovery' means young people can go out dating again, she says nothing about how , in creating alleged recovery for non-disabled people, she and her cronies have set back the Disability community a 100 years. Far from creating a scenario where WE can go out 'dating' again, she has, in fact created prisons ...of our homes.

Now I'm waiting as we come up to an election to see how much that was taken away by this government will be 'generously' returned to garner votes. "Oh look at us we are going to give disabled people.....whatever" (but they won't tell you that last year, the year before, the year before, THEY took this generous 'gift' away from us).

So whilst the UN declare tomorrow OUR day, the population will scarcely notice our existence and continue to pop a coin or two into a charity box for a tokenistic badge of generosity to pin on their lapel, or buy a packet of charity Christmas cards, Thus going home and patting themselves on the back that they've 'done something' for disabled people.

I loathe this cultural shit that is played out in every country of the world, not just here. Where disabled people are almost the last group of humans to be considered 'human' let alone equal. Where Charity not RIGHTS is all we get. And where, here in Ireland the Government has STILL not ratified the UN convention on RIGHTS for disabled people.

Unfortunately I cannot tell you NOT to pop your coin in that box or buy Christmas Cards because many disabled people have to live and STILL this is the only route to 'living'.

But I can tell you , I hate it. I hate it that that is all many non-disabled people do to 'equalise' us with them. That that is all non-disabled people think is useful!

Don't stop your money giving....but PLEASE start thinking about how Charity is not a way to live. That Charity is a dis-respectful enterprise, that Charity does not equalise us, that Charity is humiliating and patronising.

One thing you CAN do, is to start seeing 'Disability' not as 'something wrong with us, defective human beings, but that 'dis-ability' is actually a political process of 'dis -able-ing us'. 'Dis-Ability' is when non-disabled people see us as NOT 'able'. When the structures, policies, education, employment , supports are destructive of our rights to be equal participants

Your politics need to shift from 'dis-abling' us to 'able-ing' us... by fighting for equality. Join with us disabled people to fight for 'RIGHTS NOT CHARITY' ; to fight for true equality, for respect, for a 'life worth living'...not dependent on the charity box but on political will which affords us the right to be 'equal' Irish Citizens.

I am sick to death of the constant message that we are costing so much money our country is in deficit! Its as if we disabled, sick or elderly people (all by definition disabled) of Ireland caused austerity.

Scapegoating was, is, always evil...but here in Ireland it has reached the heights of  a cultural way of living for many non-disabled people.

I'm hoping 2016 will see an alliance between non-disabled people and disabled people to fight the pernicious lies about what 'disabled' means  and to rejoice in disabled people and REALLY know who we are.

         Believe it or not this woman is  disabled!  and a wheelchair user!

Forced to behave unethically! Irish Health care system (or should I say 'death' system?)

Today, in chasing the whereabouts of the various appointments I'm waiting for in the PUBLIC health system in Ireland, I can only come to one conclusion. I am indeed forced to behave unethically, against my conscience and totally against all my feminist, human rights beliefs held for many years.

I believe health care should be available to all. No tiers, no preferences, no passage because you hold power, money, status, position or are a colleague.

The human being deserves health care NOT tainted by the cheque book or the notes you hold in your hand., or the bottle of whiskey post service!

So I chase my case..."where is my appt for my echocardiogram?' This was ordered by my consultant in May 2015...because my disease affects hearts. and my GP had carted me off to the A&E in April from the GP surgery.

The answer "the next available appointment is in February 2016".

I nearly freak  but quickly remember if you freak and shriek they call you 'aggressive' and put the phone down on you. a strategy I now believe is a deliberate policy. 'Oh make her angry that way you can put the phone down'. Its a common mantra, so common I truly believe they've been taught to actually stir you up so they can 'justifiably' put the phone down. Thereby not having to sort the problem.

I digress...so I don't shriek, "but I could be dead by then", "That's the next appointment"...anyway she speaks to someone, who speaks to someone...after I tell her I'm off to the UK to be admitted to hospital because I have a RARE DISEASE and need this done before I go into hospital...so I get an appointment...next week.

That's my first guilt trip...trying to find a way of circumventing 'the system'. Its not untrue..., but I know I 'used' it to get the appointment. Because I wanted results before the UK visit.

Ditto an ultrasound on my thyroid and other neck glands...(I've had cancer),this morning I ring up the ultra sound dept;  "can you tell me when this appointment might be" (ordered at least 5 months ago) , a steely woman answered, not prepared to discuss, curtly said; "you are on a waiting list";

"but I see a consultant in Oct, no point if ultra-sound not done"...
"you are on the waiting list". then she added...
"do you have insurance"...
"yes", I said ...
"you can use that to go quicker"...I answer
"but that's jumping the queue"...

and I have the awful vision of jumping over the heads of my sisters and brothers in humanity...

now to a wee discussion on health insurance. The poor cannot afford it, premiums are rising beyond most income levels, out of reach completely to anyone on any benefit or pension. I can just about afford the premium, but if I "go private" the full costs of procedure is NOT always reimbursed. So I still have to pay, sometimes a considerable lot, for a procedure...which I can't afford!

Though some insurance policies pay these full costs, mine does not. I largely keep insurance for inpatient treatment.

Those policies that reimburse the full costs tend to be 'high end' policies. so we have a three tier system.
1) those who can't DEFINITLY afford the premium, so are full public patients.
2) those who can afford premium but can't afford the 'shared insurance-self payment' of a lot of alleged 'private' tests , physiotherapy, etc. These are the half-and-half group, private/public patients,  and
3) those who have 'high end' policies that pay for everything. These are private patients.

So now it's common for the middle bracket people to perhaps 'go private' on testing but bring the results back to consultant. The hospitals are in a win-win situation here. They get money from the insurance companies for 'private' tests, and also cut out people from the public waiting list.

So I'm asked to compromise my beliefs, that a health system should be an equal system for all.

Use my insurance , jump the queue. 

Some ask me 'why pay for insurance if you're so politically bent towards health rights and equality'?

Fear, fear of languishing in a public health system not designed to save your life...no its designed to offer as little as possible ...and to rather HOPE you'll be dead soon. why else would the echocardiogram waiting list be so long.

"die woman, (or man) die"...the public health system cries. DIE, DIE, DIE...you are too expensive.

The poor people will castigate me for having insurance "all right for YOU...you can afford insurance"...and castigate me for what they see as not joining in political solidarity...fighting health inequality...but I'm trying to live with my rapidly disintegrating body, with a rare disease where everything is failing. So...

I am afraid...I pay the premium for a private service I can't really afford.

How dare this right wing government force me into medical terror, force me to behave both unethically and un-christan-ly' , to be shunned by my working class friends and the many now middle-class poor too...

How dare this right wing government treat poor, vulnerable, bottom of the ladder citizens as less worthy of a good medical care system.

How dare this government pay lip service to protests, letters, campaigns trying to argue for a better health system for all.

How dare they make me fear for my life...at the end of my life...

I will continue to fight for medical service EQUALITY...having an insurance policy, the lowest kind, will not stop me being in solidarity with those who cannot afford one.

Its the only way I can ethically, morally function in this rotten system...

I am not going to forfeit my soul or love for others by accepting the unacceptable. I'm going to protest the evil...and I do.

Fighting to ensure that complaints against the HSE are properly examined | Irish Examiner

Fighting to ensure that complaints against the HSE are properly examined | Irish Examiner

Values, Hopes, Ambitions of the HSE in Ireland. 2015-2017

Yesterday forms that my consultant filled out to ask that myself and twin go to the UK were acceptable.  Today they are NOT.

He has to fill out a whole new set of forms for the 'overseas treatment purchase fund' , the E112 forms that allow Ann and I travel abroad for treatment.

Did my consultant know this...NO!
Did we know this...NO!
Did my TD know this....probably (he's FG)
Did the media know this...NO!

Do I know what the changes are ...NO!
Does my consultant know...NO!
Does my TD know...I don't know
Does my GP know...I don't know
Does the media know...I don't know.

Who knows?

It seems only the E112 office.
Changing the goalposts is for one purpose only - saving money.

The rhetoric of this government and the HSE stinks...

The Director General of the HSE, Tony O'Brien, presented the Corporate Plan for 2015-2017. He declared these as 'ambitions' for our services ('Health Matters'; Summer 2015). So health 'matters' to Tony O'Brien. 



here are the 'Ambitions'.

You could weep, I do weep,,, look at it!  Care, Compassion, Trust and Learning. Is this a sick joke? do they truly believe WE believe this guff?

So much care in the HSE that they refused two seriously ill, disabled 62 year olds, with rare neuro-muscular disease decent wheelchairs. That they refused one of them a bath lift, leg risers for her sofa... and so on.

So much compassion that they refuse to dialogue, visit, talk with same two older women. They run rough-shod over policies, denying and interfering when they are not allowed to do so. calling the older sisters 'serial complainers' , when all they do is ask for the care and compassion they are entitled to.

So much trust and confidence that the sisters have they want 'out' of this country, want to commit suicide, want to take the HSE to the highest courts. So much trust and confidence that both have panic attacks on receiving letters with the HSE franking stamp on it. Who handle it as if it is contaminated with ebola!

So much learning is undertaken the local occupational therapists don't know how to properly assess for powered wheelchair and seating for neuro-degenerative disease.  So much learning that consultants don't know anything about rare diseases. So much learning that consultants don't appear to know what a 'care' plan is!

"We will try to live our values every day...."

Dear Director General,

How pleased I was to read of the ambitions of the HSE for 2015-2017. Sadly I can give you evidence that the HSE has breached these 'ambitions' spectacularly in the case of Dr Margaret Kennedy PhD and her twin Ann Kennedy, of Greystones, Co Wicklow.

It is urgent that you instigate a public, independent inquiry into the 'care, compassion, trust and learning' that has been the experience of these twins for over 5 years in Co Wicklow.

Your 'Ambitions' are a mirage, a vision, or hallucination more likely. Drafted on paper worthy of better plans.

You do yourself no favours by writing 'Ambitions' that are truly never intended for operational implementation.

We are willing and waiting to meet you to discuss our experience of Co Wicklow's HSE 'ambitions' for us. The 'values' are breached almost on a daily basis.

Yours Sincerely

Dr Margaret Kennedy PhD    & Ann Kennedy


Will he meet us...probably not.


Where does this leave us...up a river without a paddle. Sure as eggs is eggs, the HSE has no 'Ambitions' for the Kennedy twins, let alone a paddle.

testing for rare disease in Newcastle UK

 

 

HSE trying to take wheelchair off one twin

 

 

 

When the news is not 'sexy' ; is not tragedy 'porn'.

A conversation with an Irish times journalist recently confirmed what I also knew.  'News' has to be exciting, traumatic, disastrous or downright scandalous if it is to be printed. Such news is a 'seller'. The term used is 'sexy' or 'Porn'.  Poverty porn, vulnerability porn,  disability porn, elderly porn, political porn...in other words the new 'porn' has become the titillation required in our newspapers.

So the older person or learning disabled person abused in a home, the young child damaged at birth by medical blunders, euthanasia debates over elderly , sick, dying, homeless people dying , This is grist to the mill...it stirs people, it enrages, it titillates in a different way.  It strikes the heart of those of us who care. and I do care, about all of this. These are worthy stories which need to be reported.

They are what 'sells' newspapers. Big murders, scandal, skulduddery, people in high places unmasked, and so on.  the voyeuristic new 'porn' sells.

So the daily drudgery of ordinary individuals whose lives are decimated by a failing health system, failing care system, failing support system does not draw the heart in quite the same way as a child dying, a young person loosing their legs (particularly if in an heroic act or utter tragedy), or a murder of an older person by their son, or terrorist or vagabond!

The ordinary daily decimated life is not 'porn' enough. it does not sell.

Another thing which does not sell...is any criticism of the 'system' that newspaper owners rely on. Politics has invaded journalism like never before. journalists seem unable to be 'pure in heart'. They write what will sell, Not what will change or improve the system.

There are exceptions of course, there are journalists who have their slot and use it well. Beatrix Campbell, Julie Bindal, Carl O'Brien, Finton O'Toole, come to mind.  The greatest of all in Ireland were Veronica Guerin and Mary Raftery. Both now deceased. Cut down in their prime.

I know Mary Raftery would have highlighted mine and my twin's plight. She would have 'heard', she would have reported it.  She had integrity, she had 'soul', she cared. I knew her...she knew me...I miss her...she was NOT into 'sexy' or 'porn' journalism, she was into truth.

But no newspaper wants the story of the daily trudge of the Kennedy Twins lives as two elderly people with an obscure unknown rare disease, whose lives have been tormented by HSE officials who rather than helping have created further suffering,

Looking at how and why we have been reported over the last few years is interesting.  It has been 1) if we holler outside the Dail with catchy visuals like pink bowler hats or red scissors...this is 'sexy'!  innovative, new, interesting even eccentric.  especially if a 'notable' endorses us in some way.

2) as vibrant, brave, independent twins with rare disease but battling on regardless.

3) if a disaster happens such as wheels falling off a HSE wheelchair...

These are all in the category of 'porn'. All 'sexy'.

But over ten years of struggle to get a diagnosis; of an Irish health system ignoring rare diseases, putting up barriers, not caring, and just...well...treating us (and many others we know with rare diseases) with utter contempt is not 'porn' or 'sexy'.

The fight for a decent wheelchair off the HSE is not 'porn' or 'sexy'.  It WOULD be if we were 5 years old with an horrific disease or physical disability...certainly too, if pretty, with pink ribbons in our little pig tails. This is the 'aw' factor that sells. Not pictures of the 63 year old wrinklies from Greystones, Co Wicklow.

It never is a NATIONAL concern, never reported in the NATIONAL press...I mean, come on...wheelchairs are NOT 'sexy' !  No-one wants to know if I can get from A-B in safety or comfort. Or indeed, get from A-B at all!

this is not 'self-pity' writing here, this is reality. This is how the media works.

The fact older twins with a rare disease are being daily 'neglected' by the HSE services; mostly the managers, intent on not spending money. Not generally the front line workers who try to be kind but have their hands tied.

The fact disabled and ill twins have no-where to turn to get our story heard doesn't 'grab' the journalistic 'porn' industry. The industry of 'sound-bites' not marathons!

The fact those in residential care have HIQA to fight for them but those in community care, living in their own homes have no-one, doesn't seem to be 'sexy' either!

This is all boring Margaret, Boring, Not the 'porn' we need.

So what are twins who languish in an Ireland that largely has ignored the suffering of elderly, ill, disabled, person living at home in their own community...we carry on creating new ways of getting the story out. Trying not to fall into 'porn' or 'sexy' sound-bites which we abhor. Yet being catchy enough to raise interest.

We do-not give up.  We seek to improve the lives of all in our 'boat of despair' .  We fight for all.

The daily toil of many disabled and ill elderly DESERVE to be heard.

                  NO we don't give up easily...even in torrential rain.


Check our facebook pages : 
Wheelchair Rights Ireland and Victims of the HSE-Unite







 

Stations of the Cross for Caring people

Jesus is condemned to death

Let us take a few moments to think about and pray for all those condemned to death in prisons worldwide. Many are innocent, killed by brutal regimes. Other deemed justifiably condemned in democratic ‘civilised’ countries. May capital punishment be banned in all countries.

No one deserves to die. And we need to save every person…because this is what LOVE does.

We also think of those we ‘condemn’ because we are prejudiced against them, gay, lesbian, transgender people, Muslims, Jews, Disabled people, homeless alcoholics, prostitutes,travellers, gypsies, refugees…Do we condemn these too…do we often abuse them, slander them, disrespect them, blame them unjustly, scapegoat, ridicule, lash with our words, our beliefs?  This is NOT love.  We are called to…LOVE.

Jesus carries his cross

We think about all those who have simply too much to bear. Those reaching suicide, those thinking about suicide. Those in debt, bills to pay but no money to pay them. Those about to be made homeless through no fault of their own. Those who have lost a dearly beloved, those who are lonely or afraid. May they have SOMEONE who cares about the. May they live…may we have the ear to hear them, help them.

Jesus falls the first time

We think about those whose life’s burden has made them ‘fall’…into drug addiction, stealing, violence…their hearts are beaten into stone by suffering. They simply care no more. May they find SOMEONE who can help them see a different way….may WE catch them as they fall, BEFORE they fall…

Jesus meets his afflicted mother

We think about mothers torn apart by war, by poverty, by the loss of their daughters and sons. Whose lives are ruined by rape, torture, killing or sexual abuse/assault. Women and girls targeted due to gender alone. May they find COMFORT from a trusting person…who can heal the pain.

Simon of Cyrene helps Jesus carry his cross

We think of all the aid organisations throughout the world, willing and ready to help the fallen in war, hurricanes, floods, earthquakes, and other disasters. We think about those who picked up bodies and body parts after the German air crash. People who witness unspeakable horror yet do their work without seeking honour or praise…and in doing so heal a little part of others suffering. May they find SUPPORT during and after what they’re going through.

Veronica wipes the face of Jesus.

May we too wipe the face of suffering.  Especially the face of children and adults who have been sexually abused, used in pornography, defiled, debased and left. May we always be there for them, ready to wipe the tears, and a listening ear. May these victims find the COURAGE to speak…

We wipe the faces of all those who lost loved ones in the German aircrash. Such a terrible, deliberate, loss…unspeakable, unfathomable, unbelievable…

Sometimes tears last forever and need to be wiped away at several points. Never forget anniversaries, never forget the horror…are we really ready to HEAR AGAIN the story and the grief?

Jesus falls the second time

The world is sometimes a very bad place for some fragile souls. Not once do they fall, but twice. The alcoholic who swore he/she would never again drink. The drug addict clean for 8 years starts again… may they find STRENGTH to try once more…just once more…and more again. Never condemn, never lose hope…may we always Love…

 Jesus meets the women of Jerusalem

We think today especially of prostitutes, women of the night. Reviled as sinful, debauched and wicked. We think of women trafficked from eastern countries so men can have their way and destroy lives for money. None of these women are sinful, wicked or whatever we may think…these are women who are vulnerable, trapped by men who harm them. 

May MEN be the ones to stop this evil trade in women. MEN who say this is simply not right. MEN who speak up for women in the night…MEN who respect women…treat them as EQUAL…worthy of integrity of body and soul..

Jesus falls a third time.

When the load is heavy, you fall…it just cannot be lifted any more. We think of all very weary people, men women and children…with loads TOO HEAVY for them. Can we hear them crying out for help. We think especially of the homeless men and women who have been on the streets for years. Can they ever ‘get up’? and if they can’t can we love them where they are…and help?

 Jesus is stripped of his clothes.

When there is nothing left and we are stripped of everything…when we are laid bare in shame…laughed at…blamed…when friends and family are gone in the other direction…what is left?  Who is left?  Others perhaps, who see the humiliation and wrap clothes of love around us. Will they ensure humiliation can be overcome…lived through…triumphed over…yes it can…with help

Jesus is nailed to the cross.

We think of all those people who today are in intensive care. Many unconscious. Many barely alive. Loved ones sitting, standing, by the bed…in the corridors…in the garden weeping or smoking…waiting…waiting…some will live…but maybe disabled or suffering…others will flourish

others will die…

Jesus dies on the cross

And for those who die there will be much wailing and roaring and lamenting. Much pain and suffering of those left behind. Left with the loss.

We think of all those who have lost loved ones, husbands, wives, parents, brothers, sisters, children, neighbours, friends…and beloved pets (yes these too). May we walk beside them doing no more than BEING there for them.

 Jesus is taken down from the cross.

After the death, after the storms, after the wars, after the pain…after the murder…after the murder trial …there is silence…a great deep SILENCE.

May we today think of Elaine O’Hara…brutally murdered…savagely tortured in mind, body and spirit. May we never forget a wounded soul was preyed upon. Like so many other wounded souls. May she rest in peace.

We think also of her family and all those left in stunned shock after this terrible evil.  May they too find peace.

Jesus is laid in the tomb.

There comes a time when loved ones must be buried. Not forgotten, but no more with us.  There comes a time when hurts and betrayals must be buried, not forgotten, but no longer with us…there comes a time when ambitions and hopes have to be buried, not forgotten…but no longer with us…because a NEW life beckons, a DIFFERENT life beckons. New paths to be trod…new ground to plough. NEW.

Jesus rises from the dead

NEW LIFE…new homes, new children, new job, new country, new hopes, new dreams, new love, new partners, new ways, new beliefs, new friends, every day is NEW

NEW is a beginning…a dream…a way forward. Tomorrow will bring a NEW day…to love…again

YES…IT WILL!

 

What is a wheelchair?

The whole concept of 'WHEELCHAIR' is much mis-understood. It is argued a wheelchair is an 'alternative to walking', or 'a wheelchair is for someone who can't walk', or 'a wheelchair is a mobility AID'.

All constructs are simplistic. A wheelchair is not about 'not-walking', a wheelchair is about 'living' , or rather 'not-living'. If you don't have one you simply cannot be part of the 'living'. A crap wheelchair is not about 'living', but is in fact torture. To be given a crap wheelchair by the HSE is abuse, is negligence, is dangerous and disrespectful. Its a breach of human rights.

Nor is a wheelchair 'just a bit of equipment'; a chair on wheels. it helps. NO again simplistic. Its not equipment, an object, it becomes, it's a living, vital, part of wheelchair users living being.  It being so, the body is enhanced, not diminished (unless the HSE decides all you need is crap), your body could be 'completed' with the RIGHT wheelchair. you can feel good again, part of the world again, part of the living. It's about EQUALITY not about disability!

It's a joy and a right. Precisely because it allows you participation once again...belonging, being, with ...your community.

So who uses a wheelchair? again simplistic answers. Those who CANNOT walk use wheelchairs. Right ...AND wrong too!

Yes, we all know those who acquire spinal injury or those born with spinal defects need to use a wheelchair. But this is not the full picture.

Many other people need wheelchairs.  Those with serious illness, they can walk but walking is difficult, or tiring, or just too damn painful. Those with fluctuating conditions, having good days and bad days. On the bad days a wheelchair is a must.

But too often society, communities are still ignorant. for many a wheelchair is only for the completely paralysed. Even doctors, occupational therapists, neighbours and family show complete mis-understanding of the wheelchair user.  We walk but only with difficulty, with pain, with hardship. Why because we have a rare muscle wasting/energy/parkinsonism/autonomic/metabolic disease. Plus arthritis and auto-immune diseases. REAL diseases. Here are some comments made to myself and my twin.

• "I saw them walking the other day they are NOT disabled" (written on a community facebook page where we live)
• "Why do you need a wheelchair when you can get up these stairs?" (A new GP to my sister)
• "don't bring your wheelchairs" (family member regarding a family event)
• "I heard parents at the school gates discussing whether you were really disabled today"  (reported to me by my neighbour)

So what is a 'really' disabled person? If you walk at all you are not disabled? Huh? Again, Simplistic. Disability spans a range of conditions. Some are 'dis-abled' by asthma, some are not. Some are 'dis-abled' by arthritis, some are not. Some are 'dis-abled' by spina bifida, some are not.

Some people in wheelchairs are NOT dis-abled, in the sense we use that word, unable (which is again a simplistic discourse). Whether you are disabled or not is a complex issue. for many disabled people they would argue the biggest dis-abling factor is NOT their condition/defect/disease but society's discrimination, beliefs, and negative views about them. Society's total disregard to allow them to work, rest, play within society. They argue they are not 'dis-abled' by their condition but by society.

It's become an issue to be judged by others. usually non-disabled people.  Non-disabled people largely decide whether or not you are disabled. whether or not you NEED a wheelchair. You are NOT allowed to say "I need a wheelchair".

You are not allowed say 'I need a living wheelchair', that means a GOOD one. The HSE do not supply a 'living' wheelchair. They supply crocks. This is discrimination. it is disrespect, it dis-ables you.

So folk, my message today.  Please educate yourself on what it really means to be a wheelchair user. It is not only about paralysis. please educate yourself about what the word 'dis-abled' means, it's not always about your condition, and often more about society. Please do not judge someone as not a genuine disabled, wheelchair user because you se them walk to the post office from the car, or into a chemist. This might be all they can do today.

As for the HSE, I have long ago lost all faith and trust in this evil empire. it is not there the serve. It's there to crucify. it does not uphold rights. the whole structures of this empire is to save money by not giving services . It crucifies both patients and the GOOD professionals within who really want to serve sick and disabled people.

But you the ordinary person...please don't add to the misery. 

a wheelchair is a right - it is my life - my living - my participation - my equality - my sanity - my being able.....alongside YOU!

Time Warp Ireland

In the Irish times immigrants and emigrants tell their stories. What it's like to leave Ireland and what its like to come back.  everyone seems to agree one thing...it's painful, whichever way you are travelling.

Recently someone wrote a piece about how returnees come back 'enlightened' or rather with their horizons expanded. They've changed, they've seen progress, new ideas, innovation, standards, policies of the new age. Then on returning nothing has changed HERE.  It's same old, same old , head in the sand, back slapping, brown envelope, who you know, keeping them on your side, happy skulduddery. 

That's when reality hits.  That's when you long to love Ireland like you used to...wasn't ignorance bliss. you simply never knew how narrow-minded, enmeshed, cronyism-rife, Ireland was. You didn't KNOW it was a small hick island! You just did not SEE it. you didn't know or experience it. Going away...changes you completely.

Coming home is harder than you might think. You didn't know how everyone is just a gossip, where confidentiality is not an ethical base of either business or health care or neighbourhood watch!

Where your GP can tell you how the consultant, YOUR consultant skipped the country for tax reasons! Where a villager you don't even know,  tells you some child you know was sexually abused in childhood and is a holy terror in school, where a neighbour can tell you who has died, who was robbed and who gets government grants and such like...

Where the local primary care team is beyond the pale in discrimination, oppression and deviousness to such an extent you need your solicitor in tow. Where they almost accuse you of 'forging doctors letters from a top hospital in England'. well they DID say; "we can't accept the doctors letters from YOU because you might have forged them, they must come directly from the consultants". You begin to worry whether they need to be 'locked up' by the men in white coats for severe psychotic paranoia!

Where consultants just don't know how to challenge the local primary care teams for your benefit, preferring instead to be 'Mr Nice Guy' to what he probably sees as his beleaguered medical colleagues. After all patients are truly out to screw you, aren't they! So the patient in extreme hysterical distress because the powered wheelchair she was in ploughed into a wall when the wheel flew off on her way to see him was translated to the primary care team as 'understandably upset'.   UPSET!? 

This is when weariness sets in. a bone weary lethargy ...of a magnitude enough to send you to bed in exhaustion. The 'fighting' with 'authority' gets you no-where because there is a game to be played, and its a game you don't know the rules to.  You are advised to 'tow' the line, go along with it, pretend you like it, agree to do it, etc... not because you believe it the right thing to do, but because its part of the Irish corrupt game everyone is playing and if you're not 'in' you are 'out'.  Its so well played the HSE have standard letters to send to TDs or local councillors which cleverly exonerates THEM and blames the patient. So the TDs and Councillors are 'happy' and they can rest assured the patient is making it all up.

You might think I've got a true bout of paranoia now...well when does healthy scepticism become the truth of how people operate? how does suspicion, because you see it time and time again, not become paranoia? good question.

All I know is I'm not paranoid, I am one not for turning. I can't play that game...I see it all so clearly...too clearly...I've been away for 42 years, I saw a different way, it was not like THIS where everyone tries to play a perverse game ....but you know its because they are encultured by corrupt education, religion, abuse and narrow-mindedness. they are quite simply, products of  a dysfunctional island. No manner of hanging on the trouser legs of Merkel makes this Island any better. it's infinitely WORSE for the right wing political shanigans of Kenny and co .

it would be best all round if the whole Island sank in the Irish sea.