Wednesday, March 18, 2020

Jean Vanier: Desecration of women


The well from which we drink is poisoned
Dr Margaret Kennedy

Jean Vanier the founder of l’Arche, has now been revealed as a sex offender. This has been shocking and hugely painful for many women and men who for years revered him and learned from him. To know that your idol has clay feet is hard to compute.
To call someone a sex ‘offender’ is not to automatically place the person in a criminal context. The criminal law has not yet caught up with the whole notion that vulnerable women can be coerced into exploitative and abusive sexual activity from which they have no mechanism to extricate themselves. However these men are ‘offenders’.
In America there is a distinct statute of criminal law for any professional who sexually molests whilst in role as a professional. In some states clergy are included as professionals. The UK or Ireland has no such statute.  
Vanier, taking the role of spiritual director, mentor, counsellor, would and should be regarded as having a religious professional role.
We now know and understand the whole notion of ‘grooming’ that takes place when children are coerced, encouraged, manipulated into sexual activity with predatory sex offenders. These sex offenders skilfully silence the child. We understand that children cannot consent to sexual activity and when it does happen it is a criminal offence and not their fault.
However it is not the same for adult women. The first thing many people think is why did that woman apparently ‘agree’ or ‘acquiesce’ in the sexual contact. After all, she was not a child, but a grown adult. Was she not capable of consent or not consenting? Vanier was not a cleric, but to all intents and purposes he acted like one. What he did needs exploring in order to safeguard women.
I am now an older woman of 67 years, years where a lot of water has gone under the bridge since I was molested by an Anglican priest when I was aged 25. The horror and terror of those frequent assaults has never disappeared. I too, for years, wondered why I would ‘allow’ this priest enter my flat to do what he had aimed to do and planned to do. For his behaviour was predatory and I later found out I was not the only victim. There were at least three others; four of us.
He was the chaplain of the college I attended and he molested several women attending Christian Union. It took me years to deal with the shame and guilt of his serious sexual assaults and I did that by trying to learn about myself and about why clergy target adult women.
My learning began when I set up a group called ‘Christian Survivors of Sexual Abuse’ – CSSA, in the late 1980’s. A support group for Christian women who had been sexually abused as children.  When women started to come forward as victims of abuse as adults, I had to think deeper about what happened to me as well.
I then knew it was not my fault. I had believed I was the only person this happened to. How wrong I was.
None of us believed we caused our own abuse, but we did suffer shame and guilt and this was very difficult to deal with. We had no one to talk to except between ourselves. We had no literature to read, no groups to go to, no advice to obtain, no law to have recourse to. We were deemed adults able to consent. We were often blamed, thought able to repel – if we wanted to – predatory clergy. Even blamed for ‘seducing’ the clergy person. We made no headway asking our Christian denominations to challenge this sexual exploitation, to censure the behaviour, to deal with it. Much of this is still the same today.
If we did report it to church authorities it was conceptualised as a relationship, albeit a wrongful relationship. (Just to add to our shame and guilt). Some denominations even conceptualised this as an ‘affair’ or ‘adultery’.
It was deemed ‘conduct unbecoming the priesthood’ (Anglican Church) or breaking celibacy vows (Catholic Church) if it was deemed anything and mostly our cries were ignored.
Notice why it was ‘wrong’, and where the focus was…it was ‘unbecoming of the priesthood’ and ‘celibacy breaches’.
It was never viewed as sexual assaults on women. The focus was male behaviour in context of their priesthood. It was priesthood that was harmed, not the victim, the woman.  We were invisible.
In my PhD research I learned the definition of sexual exploitation;

Sexual exploitation occurs when a person in authority, in role, as Clergy, Minister or Pastor sexualises contact with female parishioners or those who seek his help for his own sexual gratification.

It constitutes exploitation whether or not women consented, if at the time they are a ‘client’ or parishioner.

The Pastor mis-uses power and role whenever they sexualise contact with someone to whom they have a duty of care.

Consent is compromised within a setting where the woman seeks the advice, counsel, teaching or spiritual direction of her Pastor.’

If women seeking guidance or spiritual direction from Jean Vanier had known all this they could have safeguarded themselves. If the Church believed it; the women would have been safeguarded.
Also as part of my PhD research I analysed language use in many articles concerning clergy sexual exploitation. There were constant deflecting euphemisms employed to ‘soften’ the reality. I called this ‘false naming’.
False naming is a major component of institutional violence, for it helps to accomplish denial. False naming means we can avoid responsibility and it protects the abuser. False naming creates false consciousness. It avoids assigning responsibility, thus cloaking the identities of the offender. This false naming sends a message to an offender that he has still not been found out and that the Church is not concerned. False naming allows women to continue to be abused by clergy.
I categorised ‘false naming’ under headings. Under ‘normalisations’ I found this language; Affair; (Extramarital/Clandestine), Sexual liaisons, falling in love, adultery/marital infidelity, infidelities, unfaithfulness, sexual relationships, relationship, sexual attraction, sexually intimate, sexual seduction.
Under misconduct I found: Sexual misconduct, sexual malfeasance, violation of forbidden zone, abusing intimate relationship, misconduct ‘mess’, Profession al sexual misconduct, sexual infraction, sexual misdeed.
Under pathology I found; Sexual addiction, acting out, intimacy deficit, boundary diffusion, sexual boundary violation, PSM (professional sexual misconduct) Non-paraphilic sexual interest.
Under minimization I found; inappropriate behaviour, become involved – involved sexually, inappropriately involved, involvement – emotional entanglement, inappropriate touching, sexual encounter sexual contact,
Under Euphemisms I found; the phenomenon, straying into dangerous waters, fallen, situation, the problem, male malady, get into trouble, delicate situation, trouble, clergy crises, this intimacy, dalliance.
Under misbehaviour I found; sexual escapades, naughty, transgressions, indiscretions, succumbs to sexual attraction, sexual favours.
Under morality I found; sexual impropriety, morally indefensible behaviour, moral failure, immorality, moral lapse, wrongful sex.
Under weakness I found: sexual temptation, personal failure, failure, intimacy failure, human frailty, and mistake.
Under theological I found; Sin, evil.
The only categorisations I accepted were under; criminal acts; Crime, Sexual offence, rape, sexual exploitation. However we are still light years away from criminalising professional sexual exploitation in pastoral settings.
It certainly seemed no author of the many articles I examined could name correctly what was happening. The offender was either out of control, immature, misled, encouraged, in a relationship, or committing adultery or in many other categories. He was portrayed as not particularly responsible nor causing much harm.
I knew this was all wrong. I knew I was neither in a ‘relationship’ or that it was an ‘affair’, (the man was married) or any other category other than it was a sexual crime against me. It took years to get to this point. 
I was a troubled young woman, already needing psychological help and had previously been hospitalised. Those early years of my adult life were torrid and marked by childhood trauma and abuse. This predator priest chose well! He had targeted me.
We had been manipulated, and mentally and emotionally trapped into something we did not consent to, we did not want and we certainly did not like. Finally, we did not know how to ‘get out’. But we were adults and no one wanted to know.
I wanted to know, I wanted to know how this happened, why it happened and what was the harm done and how recovery could be envisaged.
Realising that over the years of my CSSA work 200 women had contacted me to share clergy abuse as adults, I knew I had a pool of subjects for a doctoral piece of research on ‘clergy sexual exploitation of adult women’. 127 woman were interested to be part of the research, but 65 women were final subjects of the study.
My starting point was to only focus on situations where women had met clergy in the professional or pastoral setting. Women had not met the clergyperson on the golf course.  The beginning was not in the context of an equal friendship but in professional – parish work or pastoral care.
The clergy/pastor/religious leaders denominations [1] were; Anglican 25, Roman Catholic 25, Baptist 4, House Church 2, Methodist 2, Assemblies of God 1, Pentecostal 1, Quaker 1, URC 1, Other 1,Unknown 2. Interestingly the majority were married men. Celibacy was not the issue.
Most of the women had desperately traumatic or abusive childhood or adult circumstances. Which rendered them vulnerable. They had, already, before meeting the clergyperson experienced multiple forms of abuse; Emotional n27-71%, Sexual abuse n25 -66%. Physical abuse n16-42%, and neglect n8-21%. This makes clergy sexual exploitation the more egregious.

They were not abused, necessarily, because they were vulnerable, that notion posits the cause in the victim. Vulnerability is a risk factor, but cause is male power and choice. They were abused because they were women, and clergymen had male privilege, power, control and wherewithal to do it and get away with it.

Clergy abused because they could; because their Brothers in Christ did also, and because the Bishops or leaders chose to protect the Church from scandal and preserve the clergys ministry.

Women were targeted and groomed.  From early subtleties, to later assaults. Nine women were raped, one made pregnant (she had an abortion) and still no justice resulted.
The most painful part of the research was hearing from the women how clergy ‘hooked’ them.  For some there was no ‘preamble’. Listen to what some of them said;
He talked about his chastity and purity and how the cross he carried was so heavy that he needed me to mother him. (Q25/RC)

He came in and he seemed more excited than usual, and he scared me, because he was unpredictable, we were in the front room, and he immediately made a grab for me, and undressed me, and it was like when I said I felt like a doll, that I just stood there and he treated me like a doll.  And he was he was excited and out of control (nine second pause). (4/Ang)

I needed to know sex was beautiful and he wanted to show me, this was before he raped me. (Q82/Baptist)

He declared undying love.  I was the woman he should have married. He was also aware that he was leaning very heavily on me as his own marriage was very destructive and he had reached the end of his tether with it. (Q78/Ang)

Yes, to begin with he was worshipping, adoring, loving, and affirming.  He said he loved me.  Later, he resented the fact I expected to see him.  (Q74/RC)

He told me what he was doing and what had happened as a child was because I had a spirit of lust, and other unclean spirits that caused it all to happen.  He was, having to fight these spirits in order to help free me, but some days he failed!  So I was very confused and full of fear. (Q20/Baptist)

I had a spirit of enticement and that I needed deliverance, and that I should seek God about that. (26/House Church)

These clergymen focused on the most vulnerable trait of women, their strategies were deliberate, often planned. If women had been in a domestic violence situation, the clergyperson would show care, support and gentleness never before experienced. Often rescuing them from the violence, even finding accommodation. If the women were child abuse survivors and found all things sexual a horror or traumatic , clergy often argued they, being priests, could neither be wrong or bad, or that the sex they offered was ‘Holy’ therefore healing. Some clergy even said; ‘God asked me to do this’; it’s for your benefit not mine’. Others, so traumatised by childhood experiences felt the priest truly ‘loved’ them unaware they were being exploited only for sex. Only years later did they realise they were duped.
Some clergy sex offenders wanted and demanded ‘payment’ in kind – sex. One woman in Ireland was pregnant at a time when single women often had to have their babies adopted. The priest said he’d make her his housekeeper and she could bring the baby. In return he demanded sex and brought her to a gynecologist for the pill at a time when contraception was illegal. He had done this before, regularly securing ‘housekeepers’ from an adoption agency in Dublin.
Other clergy used women’s ignorance of sex , inexperience as excuse to ‘teach’ how sex worked, such as for the nun going to confession who was asked about masturbation and slowing drawn into alleged ‘loving sexual activity’, admonished to not reject it – at least with him – for her benefit.
This is part of what she told me:
We were talking he sort of looked around, dropped his trousers and gave me an illustrated lesson on the male genitalia I have the visual image Im not sure whether it was at that time or whether it was at other times when he asked me to hold his penis. It was always a suggestion well, this is not for me, it is for your benefit and growth [He would say] I think, I am sure you would like to hold my penis now. There were things being said like youre going to experience a lot of sexual arousal but thatll be good for you in the long run, and of course I am so completely in control that I dont feel anything ...I am beginning to feel angry now. [He said] You will feel so aroused that you will want to be raped.  He used to say that, he was always in control; a kind of a sense of Im doing all of this for your benefit. (73/RC)

MK: And what did he say? (about masturbation)

73/RC: I’m…stopping here.  I mean I can find myself stopping. [He said] “The right hand causes you to sin, cut it off and cast it from you.”

MK:   If it was a sin for you to masturbate – then why is it OK for you to hold his penis?

73/RC: The logic of that never occurred to me.  I never actually saw the incongruity of it placed side-by-side before, even.  I do see it now.

Women were made dependent on the clergyperson, were told they needed him, would not cope without him, would fall apart if he wasn’t around or he’d fall apart. This frightened them, so they stayed.
In the research I identified distinct behaviours or rationalisations by the clergy abusers to groom, entrap, and abuse women. These were; blaming women; use of coercion, threats and fear; claiming male clerical privilege; the good deeds: rescue and gratitude causing dependency; emotional manipulations; isolation and forced secrecy; theological justifications; romantic deceptions and therapeutic deceptions. These men had a full armory to trap women.
Women dealt with their abuse in different ways. Some went into dissociative states whilst sex was happening

It felt like I was in a glass bottle looking at people but not really with them.  I panicked when I thought about it.  So I learned not to.  (Q22/RC)

[I] went into a world of my own which meant in my head it wasnt happening. (Q82/Baptist)

In the sense that it was never mentioned and I immediately went into a profound withdrawal (as when a child) until I could block it out isolate it. (Q33/RC)

Others tolerated sex because they desperately needed the money, home, clothes for children the clergy was offering, others did not know what to do and were very fearful.
How did they ‘get out’? Many compared their situation with other abusive scenarios thus recognising abuse and reflecting on their own situation; many realised they were NOT either in a relationship, or special by experiencing violence, threats, secrecy and finding they were not the only woman the clergy person was having sex with. (Most clergy perpetrators of abuse of women have multiple victims it is rarely a once off sexually abusive act.) They reflected on clergy behaviour towards them, often through counselling.
Most were severely harmed
I will never be normal. (4/Ang)

[I am] Severely damaged. (6/House Church) (73/RC)

It was a pivotal point of my degeneration as I call it, or disintegration. (9/RC)

I have been utterly shattered. (83/RC)

It’s blighted my life spiritually, mentally and physically. (6/House Church)

The past overwhelms me. (70/RC)

The toll on woman of clergy sexual exploitation is not just through betrayal, physical harm, emotional harm or rejection. It eats at the core of trust, spirituality, and the notion of a just Church, and a loving God.  Most had left their Church.

Most victims still face shame, for they have not yet been heard or believed in our Churches. Women are still blamed. We are Eve, enticing clergymen, it’s our ‘fault’ – still.
Living with the cross of shame or guilt for a lifetime is certainly not what we should, as Christians, allow, accept or want.
Many victims, leave Church because the way they were treated when they reported was ‘not of God’ and that destroyed all faith. Many leave Church whilst their very abuser is allowed remain in ministry with nothing more than a slap on the wrist.
In my case, I later fought back. My abuser went to America. When strong enough I found him, reported him and the Anglican Church paid for me to go to America to confront him with a therapist present.  I took back my power, I told him how I felt. The therapist (Male), a specialist in professional abuse of woman told me; ‘Margaret, he was a predator’.
I knew he was not safe; he was eventually removed from ministry. The Anglican Church paid compensation and arranged that I could write a Service of ‘Remembrance & Proclamation’ for my healing to which many women and men, abused by clergy as adults attended. For it was not only for me, it was for us all. The Church supplied St Giles in London and an Archdeacon to facilitate OUR service.
The Archdeacon read out a letter;
In the Church, where we witness God’s love for humankind and celebrate the teaching of Jesus to love our neighbours as ourselves, abusive relationships are wholly wrong.   
We are gathered together here at St Giles for those who have suffered sexual exploitation, abuse and rape from the very people they should have been able to rely on for spiritual guidance and support.  Whilst we can be under no illusions that today will ease the suffering of those present, I hope we can at least serve to recognise the ordeal that Dr Margaret Kennedy and others have endured. 
 
I first met Margaret in February this year, and I was shocked to learn about the sexual assaults she had suffered. Whilst the events may have happened twenty-eight years ago, Margaret’s traumatic retelling of her experiences demonstrated the extent to which they are still remembered in her life even today. What happened to Margaret is indefensible and contrary to what the Church and Christian faith stand for. 
 
Much of Margaret’s adult life has been spent in seeking acknowledgment and justice for what happened to her. Fighting for that recognition will, I am sure, have added an additional layer of pain and suffering. I hope that now the Church has been able to provide some support and assistance, although clearly that can never remove the feelings nor replace the energy she has spent in addressing these issues.
In recent years the Church has taken steps to root out  the evil of sexual abuse of children by clergy and to ensure swift and decisive action is taken to deal with those members of the Clergy who have abused children. However, we still have some way to go in tackling the sexual exploitation of adults by clergy by implementing the good practice recommended in the House of Bishops’ Promoting a safe church: Policy for safeguarding adults in the Church of England. This will ensure that pastoral care is characterised by a clear policy, based on Christian ethical standards, and establishing appropriate boundaries and professionalism and  procedures for dealing, without delay, with allegations of mistreatment, spiritual, physical, emotional financial and sexual, abuse, harassment and bullying.

Margaret deserves great credit for the work she has done to support those who have suffered similarly traumatic experiences to herself. The organisation she founded in 1993 - MACSAS- has worked tirelessly to provide information and guidance, a helpline, conferences, website, educational material to victims of clergy sexual abuse, whether they have been abused as children or as adults, and for both those who have remained within their Christian communities and for those who have left.

I pray that Margaret’s own faith will grow and that this service will go some way to acknowledge the truth of her experience and the courage of her journey for justice.  
26 November 2011.
This letter was a wonderful affirmation and I welcomed it. It was indeed unique. (No similar service has ever been held since) I brought all the pain before God, before my fellow sisters in suffering….We supported each other. We knew it was NOT our fault. We did nothing wrong.
It was a ‘closure’ but it was not erasure. I live with what he did; but it was not my fault. I fully know that now.
Its time our Christian Churches say this and remove Clergy and religious leaders, similar to Jean Vanier,  who sexually assault, exploit, abuse, rape and harm women from ministry. The time is now.
To other victims/survivors I hope you’ll find strength to come forward. It was NOT your fault, you did nothing wrong, do not let guilt and shame consume you.
MACSAS – Minister & Clergy Sexual Abuse Survivors’ is ready to help.
I’ll end with two very powerful quotes:

History, despite its wrenching pain
Cannot be unlived
But if faced with courage
Need not be lived again
Maya Angelou

I do not want the peace that passeth understanding
I want the understanding that bringeth peace
Helen Keller

Dr Margaret Kennedy’s PhD thesis can be obtained through the British Library, UK: ‘The Well from which we drink is poisoned; Clergy Sexual Exploitation of Adult Women’ - 2009

UK ONLY: MACSAS contact details: 
General enquiries: enquiries@macsas.org.uk
Helpline enquiries: helpline@macsas.org.uk
Media enquiries: media@macsas.org.uk
Email support: support@macsas.org.uk
Free Helpline: 0808 801 0340

From anywhere in the world I'm at the end of an email: 

Dr Margaret Kennedy: magsken57@gmail.com


[1] All hereafter termed ‘clergy’ for ease of discussion

Sunday, February 16, 2020

Holidays for Disabled People

I was watching a pre - Valentines morning TV Programme on RTE the other day. They decided to do a feature on Valentines breaks away in hotels around the country.

But they choose very expensive holidays and I was wondering who can afford them. Of course the only people who could afford them are the people who have got the money! So this wasn't a programme about poor people, middle income people, struggling people, having a break - it was a programme about rich people, with money, having a break.

And boy were these breaks palatial – saunas, hot tubs, spa etc,.  all laid on at great expense.

Then I considered where I could afford to go on holiday and of course I couldn't afford that! So I realize straight away and I felt straight away, the divide between the haves and have-nots.

Then something else came to my mind Cuisle, the respite care centre in Roscommon that was closed by the IWA – the Irish wheelchair Association with the backing of Finian McGrath the previous Minister for disability of Ireland. Thank God he is no longer in post.

Cuisle was the only place many disabled people could take a holiday. It catered for those who could not walk, who had severe disabilities and basically needed full-time help to have a bit of craic, and to enjoy themselves.

The place is beautiful. The food was fantastic and the outings and events brilliant - so I am told..  I am also told that many people are missing it badly. They yearn to meet their friends again as it was the only time to get together, the only time to meet up and enjoy the banter that only disability can bring.


Yes, disabled people are a community, they have a shared experience, shared understanding, shared reality, shared life, different but the same - everyone knows what it's like to live in a country hellbent on crushing you.

Everybody knows what is like not to be able to do things freely and have fun. The life of disabled people in Ireland is grim and many live in nursing homes in one room amongst those who have dementia or Alzheimer's and those who might die today or tomorrow.

And they live in these one rooms in a nursing home because the state and the health service are not willing to give them a life worth living and will they ever get out, to have a holiday, the spa, hot tub, the massage or the trips around the country - I doubt it.

Disabled people lives become restricted, become boring, isolating and grim in the environment of Ireland – allegedly an evolved society, a modern country, which in its modernity, allows disabled people to scrimp and Scrabble and beg just to get by.



With many disable people in poverty - 38% of Ireland's disabled people are in poverty. That is a huge number and I would suspect an underestimate because many of them are shored up by families and charities. They daily go, with 'the cap in hand' - they are the modern 'handicapped '. That word we hate, because it means sitting on the sidewalk, the pavement with a 'cap In our hand' begging.

But we beg anyway don't we?  when we ask for the help we need from charities and the do-gooders. We never seem to get the support that gives us equality and a life worth living. it's never 'rights' but always 'charity'. I shout;  "Rights NOT Charity" and "Piss on Pity". I do!




So when I finished watching that TV programme I became aware of the divide between the haves and the have-nots and how the morning TV programmes barely scraped the surface of disability lives and cannot even consider where we might go for a holiday or a break because we simply do not have the money to do so.

Did they not think that poor people will be watching? Did they not think of the distress that poor people would have seeing the privileged and the rich have their Valentines break. In such palatial splendor.



That's why I voted differently in the Irish elections this time round. I am tired of seeing the in equality in disabled people's lives.

I am tired of seeing the suffering, the anguish, the loneliness, the despair, the emptiness of many disabled people's lives simply because this state of Ireland and all the rich people around us do not consider us as part of the community of Irish citizens.

We are not worthy of life, let alone worthy of a decent life. We are expensive-we are seen as depriving the economy! We are a burden to be ignored. We will never get the services and support that we deserve because we are not looked upon as citizens worthy of even living.

Maybe I'm sounding depressed or negative. But it is TV programmes like this that highlight the inequality of Ireland so graphically.

When the IWA, a support organisation for disabled people do not listen to disabled people and deprive them of a holiday away; that they've always loved and enjoyed by closing Cuisle,  without any consultation or any attempt to save it.  Then we know that our charities are not working for us at all.

This is the despondency I feel today when state and charities conspire to support us in a way that is patronising, that excludes us from the discussion and conspires against us, causes harm, pain, hurt, and isolation. Charities, State and HSE with no concept of 'Nothing about us - without us'. with even less care to act upon that slogan. Our declaration of Inclusion.

I long for a holiday centre for disabled people that all disabled people can enjoy and get the break and fun and excitement that everybody else does.

Yes I voted differently in the election this time round but my vote means nothing when we've got two political parties hellbent on preserving the status quo and perpetuating societal misery and inequality.

I do despair I do.

Tuesday, December 31, 2019

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 !

Sunday, December 29, 2019

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.

Sunday, December 8, 2019

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.

Wednesday, July 31, 2019

the political hug of a crip!

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

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

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

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

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

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


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

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

Are there no nice, welcome hugs? 

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

they are ok 

i'm off to bed. 

Wednesday, July 3, 2019

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


The Disabled person of Ireland
The Disabled Older Person of Ireland
Dr Margaret Kennedy magsken57@gmail.com
Disability activist/campaigner

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

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

(Mind you I had few disability rights under 65 since disabled people are being hammered right left and centre and this government refuses to do anything about that).
So I guess whether I’m under 65 or over 65 I’m just still ‘snookered’ as a disabled Irish woman.

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


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

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

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

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

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

If you make several complaints you are judged a ‘serial complainant’ or ‘vexatious complainant’ and you might never know you are now thus regarded/designated.
Just as one disabled older woman did not know until a year after being so  described, her sister having discovered on her files (obtained under FOI) this category she’d been adjudged. Thus her valid complaints were deemed - easily - null and void.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Older disabled persons can no longer (generally) access disability centres for respite care (though to be fair I’m still allowed attend the MS Ireland respite care centre in Bushy Park Dublin, but they are poorly funded by government and struggle to take all who need respite - more anon). The respite care grant was abolished where the HSE gave grants so you could find a respite placement yourself. It was cheaper this way but abolished. Respite for older disabled persons has to be in an old person’s ‘end of life’ nursing homes. I know – I’ve just ‘legged’ it out of one such establishment (in wheelchair with my twin, also in wheelchair). It was supposed to be a 14 day respite, we lasted 5 days. I suppose I’m lucky – I did not have to stay there permanently but I was still subjected to the depressing nature of such places. No, I don’t count colouring pictures as ‘art’. Nor anything near fulfilling, enjoyable, or creative. I did that as a 4 year old…I’m no longer age 4. I don’t count a harpist dressed in casual track-suit-like outfit, plucking and singing ‘do, a deer, a female dear…’ from the Sound of Music as a beautiful classical harpist repertoire or agreeable ‘entertainment’. I found it disrespectful. To the harp and to the audience. If you cannot give a wonderful little concert to the old dears, if you cannot put a decent dress on, don’t bother coming.
I was told where to sit for lunch, told I needed to ask permission to make a cup of tea, told I could not have my bedroom door to balcony opened for health and safety reasons even if it was as hot as Hades. It didn’t cross their mind that if I wanted to ‘fly’ off the balcony I only had to go to the ‘library’ where an open balcony was available. The health and safety logic defeated me. Then when I decided to go into the garden a receptionist ran after me to ask if my unit knew I was leaving the building. Seems I needed ‘permission’ for that too. All very controlled, institutional, humiliating. At least this nursing home didn’t explain to me what a t-bag was as the previous one had. Or try to put me to bed at 7pm or quiz me on what day of the week it was.
This is all in stark contrast to the MS Ireland Respite Care Centre in Bushy Park, Dublin, where I attend as a disabled woman (two weeks a year – but the ‘week’ is 5 days) and enjoy thoroughly. I am not regarded there as ‘past my ‘sell-by-date’ or even old – even though I suppose I am. I am greeted as a real person, big hello’s and cheer. They allow you autonomy and are respectful. But as I said the government does not fund….sure we are all decrepit old bats – waste of resources so it is. So MS Ireland can’t do nearly all it wants to do. But what they do do is fine, really fine.
Recent announcements that the government plans to cut home help hours and home care packages will increase our vulnerability and hardship. We will be greatly ‘hammered’. ‘Tough’ the government seems to say to us. Older people will especially be neglected by this, become bed-bound, soil, succumb to bed sores, not eat properly, pick up infections and die sooner than needed – but that seems the plan. Passive euthanasia.

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

So am I old or disabled? Where is my wee pigeon hole?
I am old – yes – I am disabled – yes, but ultimately I am a citizen of Ireland with allegedly full human rights as a citizen.

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

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

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

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

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

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

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

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

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

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

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

I am proud that I do not do that!