'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!