Tag: Stephen Donnelly

  • Operation Mass Formation

    We need to sing again.
    We need to be Irish.
    We need to socialise.
    We need to be ourselves.

    So said Sarah, professional singer and mother from Ballina, County Tipperary, on the Late Late Show, only a few hours after Taoiseach (Prime Minister) Micheal Martin’s address to the nation and his surprise announcement that most of the Irish State’s Covid-19 restrictions were to be lifted with almost immediate effect.

    The Late Late Show, for the uninitiated, is one of the world’s longest-running talk shows, gracing Irish television screens, courtesy of state broadcaster RTE, every Friday evening since the 1960s.

    Sarah’s comments, coming just after she’d performed a rousing showband style rendition of Ike and Tina Turner’s ‘River Deep – Mountain High’, seemed to capture the official (i.e. state-sanctioned) mood of the nation and prompted host Ryan Tubridy to gush “That is good stuff! Congratulations Sarah!”

    Operation Transformation’s Sarah on the Late Late Show.

    So why was Sarah from Tipperary opening the Late Late Show on this particularly momentous occasion? Sarah, as it turns out, is one of the ‘leaders’ of this year’s iteration of RTE’s diet and fitness show Operation Transformation (or OT as it is known to cult members). A staple of Irish TV since 2008, OT has become, much like the Late Late Show itself, something of a national institution.

    Each year, the programme features five contestants. These are ordinary Irish people who want to lose weight, kick unhealthy habits and get fit. The show refers to these participants as ‘leaders’; the idea being that, through inspirational example, the contestants will ‘lead’ the diet-and-exercise-hesitant Irish public into the promised land of health and fitness.

    The leaders are assisted in their endeavours by a panel of four ‘experts’: a dietician, a personal trainer, a clinical psychologist and a GP, who, between them, design individually tailored diet and fitness plans for each leader. The leaders’ homes and fridges are then kitted out with webcams so that we, the audience, gain an intimate view of their struggles.

    Even better, every Wednesday evening we see how much progress our leaders have made – if any – or to enjoy the veritable bollocking they will receive from the panel of experts. We can also download the OT app  and follow the diet and fitness plans of whichever leader we choose to follow. There are national OT fitness event extravaganzas and ‘partnerships’ with most Irish supermarkets.

    2022 Operation Transformation Contestants.

    As I said, an institution. Supported by another institution: the Irish State. The Department of Health has spent €230,000 sponsoring Operation Transformation, and its logo is prominently displayed throughout the show.

    Sarah is also the first leader whose progress we get to see the following Wednesday. As OT host Kathryn Thomas remarks of Sarah’s performance on The Late Late Show, “You just captured that moment that everybody was feeling! It was a moment of celebration!”

    But while four of our leaders are feeling celebratory and enjoying their state-sanctioned return to freedom, things aren’t looking quite so  rosy for the fifth, salon-owner Kathleen, who, along with her farmer husband Tony, lives on a farm in Carrignavar, County Cork. Terrifyingly, Kathleen and Tony had both tested positive for covid the previous week.

    As Kathleen explains, “One of my main symptoms of covid is that I’ve been completely bored”, while Tony is more philosophical about their predicament, remarking that “Well, I’ve kind of been isolating for the past 40 years anyway.”

    Kathleen and Tony are regulars at their local cattle mart but, because of covid restrictions and lockdowns, they have had to make do with virtual visits on their tablets. This is not an entirely satisfactory alternative, however. As Kathleen notes to Tony of one animal they are considering buying, “She’s a much poorer looking cow on your screen than on mine.” The couple also lament that, in the age of virtual cattle-trading, “The human interaction isn’t there.”

    Cattle Mart.

    OT host Kathryn Thomas uses this as a cue to joke, “But at least one thing wasn’t in short supply in the house….” She’s referring to antigen tests. We are then treated to a montage of Kathleen and Tony shoving nylon-tipped plastic swabs up their nostrils while making squirming faces, all to an R&B soundtrack. This seems to be particularly traumatic for poor Tony, who needs to sit down and have his wife perform the procedure for him each time. And who can blame him?  After all, this is no man flu. This is Covid-19.

    Later, Kathleen has a video call with OT fitness expert Karl Henry, who wants to find out how she’s doing. “I feel great. I feel fine,” she says, “the only thing is the boredom of it all and the isolation of it all. The feeling is (as) if I nearly have leprosy for some reason!” Karl has a good chuckle at Kathleen’s analogy (even though she doesn’t seem to be joking) and assures her she is not the only one feeling this way, stating that, “What you’re going through, people around the county are going through. It’s a really normal thing!”

    Nevertheless, Karl and the other OT experts are taking no chances. When it’s Kathleen’s turn to have her weekly check-in, she has to do it remotely, despite having come out of her required isolation period. “Just to be extra cautious”, she is told.

    Remarking again that “This isolation from the outside world hasn’t sat with me very well”, Kathleen is once more reassured by the experts that her feelings of unease and boredom are nothing to be concerned about, with the show’s GP, Sumi Dunne, telling her “that flat effect…is just a reaction to the circumstances.”

    Kathleen and Tony looking at cows.

    This episode of Operation Transformation is a microcosm of what has been going on, regarding Covid-19, in the rest of the country and indeed the world as a whole: the constant and repetitious normalising of behaviour which only two years ago would have been considered at best neurotic and at worst deeply psychologically problematic.

    Remember when we used to joke about somebody having man flu? That curiously culturally acceptable form of sexism which, according to the Harvard Health Blog, describes “a constitutional character flaw of men who, when felled by a cold or flu, embellish the severity of their symptoms.”

    Nowadays, the whole world seems to be suffering from man flu. The only difference is that, with a case of Covid-19, you don’t even need any symptoms to embellish; all you need is a positive antigen or lateral flow test, items which have become as much a staple of our weekly supermarket trips as a sliced pan, two litres of milk and a six-pack of cheese and onion crisps.

    As Kathleen herself said, “I had absolutely none of the symptoms of covid, but at the same time I was aware that I had it because obviously I tested positive. So I was even watching my heart rate increasing, and saying ‘ok, I won’t go too far or even push my body at all’.”

    A man embellishing flu symptoms.

    There are several more occasions in the episode when Kathleen refers to the abnormality of the situation she finds herself in and how uncomfortable she feels being isolated from other people. Yet, every time her concerns are brushed off by the experts (including, as mentioned, a clinical psychologist and a doctor) who tell her that this is “normal” or that the majority of people in the country are also experiencing something very similar.

    When people like me (and by that I simply mean anyone who questions the status quo on covid) talk of the mainstream media, for the most part we are referring to the news media. But of course the flagrant bias and  propaganda doesn’t stop there. It has infiltrated all forms of media: it’s there in the soap operas we follow, the chat shows, televised sporting events, health and lifestyle programmes, children’s television, social media platforms, social media influencers, and so on ad nauseum.

    As others have pointed out, television programmes and social media do not simply provide entertainment, they also greatly influence our ideas about the world and provide a model for our attitudes and behaviour: certain individuals and their actions are presented approvingly and in a positive light, while others are presented negatively, with disapproval. Some behaviours and opinions are shown to be typical, normal and to be emulated, while others are shown to be strange, problematic and to be avoided. As such, TV shows and social media provide a powerful example of what is acceptable in a society and what is not. And far from simply reflecting reality, these forms of media are instrumental in the building and shaping of it.

    If you are somebody who has questioned the mainstream narrative about covid, you’ll no doubt be aware of Belgian clinical psychologist Mattias Desmet and his theory of mass formation. This compelling theory is a useful tool for analysing our current situation. If you are  unfamiliar with it, I recommend looking at this video in which Professor Desmet explains the idea himself.

    In a nutshell, mass formation describes the process whereby a large part of the population subconsciously disengages its rational and critical faculties in order to participate in a form of groupthink, the focus of which is usually one small point or issue. Mass formation is a phenomenon that typically occurs in the emergence of totalitarianism. It can occur spontaneously, as in Nazi Germany, or be intentionally created by the state, as was the case in the Soviet Union. Mass formation can only take place when four very specific conditions are met.

    These are as follows: a substantial number of people in the population have to feel socially isolated; a substantial number of people have to feel an essential lack of meaning in their lives; a substantial number of people have to experience what he calls “free-floating anxiety” (in other words, anxiety or stress which is not connected to a mental representation – feeling anxious but not knowing why) and finally, a large percentage of the population has to experience free-floating frustration and aggression.

    Professor Mattias Desmet.

    The four conditions were already in place, in Desmet’s opinion, when the pandemic was first announced by the WHO back in March 2020. According to one study published before the pandemic in The American Sociological Review, 25% of Americans reported they didn’t have a single close friend. A Gallup poll, which included participants from a number of industrialised countries, found that nearly 50% of those questioned stated they didn’t have a single meaningful relationship and that they only connected to other people through the internet or through technology. As Desmet asserts, “A connection through the internet doesn’t make you resonate in the same way with other people.”

    This isolation or lack of social bond leads into the second condition: a feeling that life is generally meaningless or senseless. In his 2018 book, Bullshit Jobs, anthropologist David Graeber states that 50% of people reported that their job was ’not at all meaningful’.” A Gallup poll from 2012, which included people from 142 countries, shows that 63% of respondents, in Desmet’s words, “admitted to being so disengaged at work that they were sleepwalking through their day, putting time but not passion into their work.”

    This combination of social isolation and the impression that life has no  meaning produces a kind of anxiety which is “free floating.” Unlike a phobia, which pinpoints a specific object of fear (for example spiders or confined spaces), free floating anxiety is not connected to anything tangible. Feeling anxiety without understanding its cause produces profound “psychological discontent.” Desmet notes that each year in Belgium 300 million doses of antidepressants are administered to a population of only 11 million people. This doesn’t even take into account antipsychotics, sleeping tablets or anxiety medication. Indeed, the World Health Organisation has reported that one in five people have an actual anxiety disorder.

    The fourth condition, what Desmet calls “free-floating frustration and aggression”, is a result of the isolation, lack of meaning and consequent anxiety. Furthemore, it is extremely problematic because people simply don’t understand what is causing them to feel aggression or frustration.

    When these four conditions are in place, all that is needed for mass formation to occur is for the mainstream media to produce a narrative which highlights “an object of anxiety” (in this case, a virus) and to simultaneously provide a strategy to deal with this object of anxiety (lockdowns, masks, vaccination, etc.).

    For Desmet, identifying the object of anxiety and participating in a strategy to deal with it gives people both a sense of control and, perhaps more significantly, a sense of connection. And it is this feeling of strong solidarity and connection which enables, “an extraordinary willingness…to participate in the strategy…no matter how absurd the measures or the narrative becomes.”

    We now live in a world of absurd contradictions: governments and media assert repeatedly that Covid-19 vaccines are effective, yet many more people have contracted and spread the virus since getting the jab than before the vaccine rollout. We were told that masks and social distancing would curb the spread of Covid-19 but have never been offered unequivocal evidence to that effect. And, of course, the biggest fraud of all: the idea of asymptomatic spread. It is now a commonly held belief that a perfectly healthy individual who feels well and has no symptoms of any illness is a danger to others. Consequently, they must be cordoned off and isolated from the rest of society in order to be approved of or accepted by that same society.

    For me, one of the most fascinating elements of Desmet’s theory is how he describes the nature of the social bond that emerges during mass formation. As he says, “this is never a social bond between individuals. It is always a social bond between an individual and the collective.” Furthermore, the longer the mass formation continues, the more “a radically paranoid atmosphere” is established which “destroys the connection between individuals.”

    So when Kathleen from Operation Transformation talks about being bored and missing social contact with other people, she is talking about the personal relationships she has with other individuals, whether that be family, friends, colleagues or acquaintances. However, a positive antigen test demands that she must sacrifice these personal connections in order to maintain and participate in the much larger (and faceless) relationship she now has with society as a whole. And the thing that most defines that relationship is to virtue signal, in the most public way possible, that you are keeping others safe by adhering to government guidelines, no matter how absurd or illogical those guidelines may be.

    Imagine if, only two years ago, someone you knew told you they had just got a flu shot in order to protect, not just themselves, but you and everyone else from influenza. Or that they were spending 50 to 60 euro a week to test themselves and their family on a daily basis for colds or flu, despite feeling perfectly healthy. Or that, if one of those tests gave a positive result, they would not go into work for 5-10 days and isolate themselves in their home, completely avoiding contact with the outside world. You would have thought your hypochondriac friend had finally lost the plot, and maybe even suggested they get some psychiatric help for that Howard Hughes-style obsessive compulsive disorder.

    Antigen testing.

    In fact, Desmet suggests that many of the Covid-19 measures put in place by governments around the world “are without pragmatic meaning” and function in a ritualistic way, demanding “a sacrifice from the individual; a sacrifice through which the individual shows that the collective is more important” than his or her own interests. Moreover, “people, without knowing it, will continue to buy into the narrative just because, as a social being, there is nothing more painful than to be profoundly and thoroughly socially isolated.”

    And what would the point of a sacrifice be if it were not acknowledged or rewarded in some way? Kathleen’s isolation because of a positive antigen test result is applauded by the experts on the show. Her reward is the public acknowledgment of that sacrifice: she has willingly done everything within her power to keep others safe, despite having absolutely no symptoms of any illness.

    Operation Transformation has a huge following in Ireland and it is very clear from watching only a few episodes that one of its main attractions is the sense of belonging and acceptance that both participants and the audience gain from taking part in or following the show. One woman, who planned to get involved in the Operation Transformation 5k run in Dublin’s Phoenix Park, went as far as to remark, “I don’t feel like Mrs Nobody anymore, and I’d encourage anybody not to feel like that.”

    Unsurprisingly, considering it is sponsored by the Department of Health and broadcast on RTE, there is an implicit acceptance by Operation Transformation that the State’s removal of our fundamental rights was absolutely necessary, that in doing so the State kept us all safe, and that the reestablishment of some of these rights is something for which we should be grateful. Another talking head on the show, Frank Greally of Athletics Ireland, says, of the recent OT 5k (the first OT event of this nature in nearly two years), that “when you join in something (like this) and participate, it’s an outpouring of gratitude” and that “we’re back on freedom road again!”

    So what does being “back on freedom road again” look like in the weeks since Michael Martin’s surprise announcement? When you use public transport or go into a supermarket, most people are still wearing a mask. Many school children continue to be masked up, sitting in freezing classrooms with open windows in the middle of winter. Mentally handicapped adults are still wearing facemasks in their day centres. The elderly in care homes, despite being triple-jabbed, can be locked down at a moment’s notice as soon as any resident or member of staff tests positive for covid. Tens of thousands of people just like Kathleen continue to test themselves on a daily basis.

    More worryingly, the State has doubled down on its campaign to vaccinate children despite acknowledged dangers. Other parents, just like this man, will suffer the horror of their child having a heart attack, and then be told by so-called medical experts that it had nothing to do with the experimental gene therapy that was administered shortly beforehand. Furthermore, unconstitutional and draconian legislation that was put in place back in March 2020 remains on the statute book. Minister for Health, Stephen Donnelly, could decide (using statutory instruments that do not require legislative oversight) to reinstate all restrictions, or add a few more, just as quickly as he removed them.

    In recent weeks, there’s also been a state and media pivot. The object of anxiety has shifted with breathtaking rapidity from Covid-19 to war in the Ukraine. And the strategy to deal with this new anxiety is to virtue signal your unconditional support for Ukraine and unquestioningly condemn everything Russian.

    The shift in narrative has been seamless. Just as the world’s media, in lockstep, uncritically presented Covid-19 as a simple morality tale, they now do the same with the Ukraine crisis. And the public appears, once more, to be lapping it up.

    The yellow and blue of Covid-19 public health advertising has given way to the yellow and blue of Ukraine’s national colours. Significant buildings in most European cities are now lit up yellow and blue, and you see the Ukrainian flag everywhere. In Dublin, a member of the public, to much applause, deliberately drove his lorry through the gate of the Russian embassy; soon afterwards, local councillors announced their intention to change the name of the street in which the embassy is located from Orwell Road to Free Ukraine Road.

    Protestors outside the Russian embassy in Dubln.

    At the centre of this new object of anxiety is evil incarnate Vladimir Putin and his dastardly plan to destroy Ukraine, and democracy more generally. In less than a week the number of Irish households offering accommodation to Ukrainian refugees has leapt from 5,000 to 14,500, with the State pledging that Ireland will offer sanctuary to 100,000 Ukrainians fleeing their country. That’s nearly a 2% increase in population for a country already facing a housing crisis and spiralling homelessness.

    But if you dare question any of this, then just like those that dared to question the covid narrative, you will be roundly condemned and ridiculed. Any form of critical thinking will have you branded, once again, as some kind of far-right, bigoted, conspiracy nutjob.

    All of Ukraine’s well-documented human rights abuses in the Donbas, and the distubing presence of neo-Nazi militia groups in that country’s armed forces, have not just been forgiven, but have, in fact, been whitewashed by the new media narrative. And despite his severely limited political experience, former comedian and current president of Ukraine, Volodymyr Zelensky, has been hailed as the new Churchill.

    Operation Transformation has become Operation Mass Formation, and this most recent manipulation of public opinion over the Ukraine crisis shows that we are still in the thick of a very problematic and unyielding kind of groupthink.

    So yes, Sarah from Operation Transformation, it may well be the case that Irish people need to sing and dance again, socialise and be themselves, but it was never the business or prerogative of the State to tell us that we couldn’t, and no matter what nonsense the government has come out with about ‘covid bonuses’ and ‘dividends’ for our obedience, it is certainly not their business to tell us that we can now.

    Until all the legislation that underpins the mandates is repealed, and until we make sure that such measures can never be inflicted on the population again, we are deluding ourselves if we think we are free. The current mono-narrative being presented to the public about war in Ukraine should be a red flag to us all that we no longer live in functioning democracies.

  • Spina Bifida Parents Demand Treatment

    The HSE, and health care access more generally in Ireland, has never been under such scrutiny as has been the case in recent times. From the handling of the pandemic to the chaos witnessed during last year’s cyber attack, we now face recent revelations about utter confusion in the handling of funds and a recruitment crisis, exposed in leaked tapes published by the Business Post.

    HSE CEO Paul Reid also admitted in a recent News Talk interview how, particularly recruitment issues, were “not going to be solved in one year.”

    It is reasonable to assume that addressing structural dysfunctions in health services will take time, but we often forget the real impacts, and often irreversible damages on our most vulnerable members of society, caused merely by the passage of time. This applies especially to the treatment of complex conditions requiring a multi-disciplinary approach.

    A most striking example is the effects on those children awaiting treatment for Spina Bifida/Hydrocephalus, and their parents.

    We recently spoke to Amanda Coughlan Santry, the co-founder of the parent-led advocacy group Spina Bifida & Hydrocephalus Paediatric Advocacy Group, which has been active since 2017. It raises awareness around the lack of access to care for children affected by the condition, and actively engages with the institutions to address what seems one of the worst failings by the State in contemporary Ireland.

    Amanda, along with other parents Una Keightley, Stefania Opinto, and Orlaith Maher Lalor, joined us for an in-depth interview which we hope can draw further attention to the current situation.

    The group have recently launched a website www.sbhpag.com in which sixty-nine children’s stories are presented. Here one can discover the scale of the challenges surrounding their access to treatment.

    We heard of children being left on waiting lists for surgeries for over a year for treatments, which in other European countries are urgently attended to. There have been years of complaints, which went for the most the most part unanswered and, most distressingly, in the last few months, parents of children in pain, have felt compelled to refuse to leave A&Es for days on end until their children were treated.

    Daniele: Can you tell us more about this condition?

    Amanda: Spina Bifida is described as one of the most complex conditions compatible with life; a baby’s spine and spinal cord does not develop properly in the womb, causing a gap in the spine. Spina bifida is a type of neural tube defect. The neural tube is the structure that eventually develops into the baby’s brain and spinal cord.

    Most people with spina bifida can have surgery to close the opening in the spine. But the nervous system will usually already have been damaged, which can lead to problems such as weakness or total paralysis of the legs, Urological, Bowel and Renal issues.

    Many babies will be born with or develop hydrocephalus which is a build-up of fluid on the brain. This requires a V.P or a shunt to drain the excess fluid from the brain into the abdomen or the heart.

    There are about approximately 550 children under 18 living with Sb/Hydro in Ireland. Ireland has one of the highest rates of neural tube/SB birth rates in the developed world.

    Daniele: Can I ask you for a little bit of context to give an idea of the extent of the services needed?. What are the types of care that your children need?

    Amanda: Our children need proactive care and what they are receiving is often reactive care via emergency intervention. This is often too late and results in long term damage and loss of function. These children need timely access to care particularly in relation to Orthopaedics, Urology, Ophthalmology, Neuropsychology and Neurosurgery.

    Daniele: How are these types of care being delivered in Ireland and is the capacity in the health service enough to address the scale of the problem in Ireland?

    Amanda: Currently the care in Ireland is sporadic, chaotic, under-funded & under-resourced. Some children have access to a Multidisciplinary Spina Bifida Clinic, others do not. There is no clear pathway of care for children living with Hydrocephalus alone. An annual MDT SB clinic is international best practice. We estimate 85% of SB children are not receiving this and the percentage is higher in children born prior to 2009.

    Daniele: I gather that the waiting times are causing actual daily pain and suffering. If someone breaks a bone or a dislocation, he gets treated in a fairly short time. How’s that different from the pain that your children suffer? And what happens if you go to the A&E?

    Amanda: I know of a child that received her surgery last month because the mother took the drastic measure of taking her daughter to accident and emergency and refusing to leave. She dug her heels in the A&E in Temple Street, until she was admitted. And once she was admitted sat for two and a half weeks before the child had her surgery.

    In that process, the CEO of the National Children’s Hospital Group, Joe Gannon, subsequently wrote to one of the politicians in government who had been trying to fight for this child’s case, and told the politician that she was currently an inpatient and that she was going to have her surgery on the 17th of January.

    He made it sound that it was a planned admission and that she had been given a date and they had come in.

    Actually what happened is that the mother refused to leave until her daughter’s medical needs were met and also the child did not have her surgery until a week later. The mother is very grateful to all the doctors involved as they all told her that she was doing the right thing not to leave and were very supportive. She was supported in that sense by us as well but she should have never had to take such a drastic step.

    We’ve had another number of families that have had to do this since last September.

    Another mother went in on a Saturday with her son, who had dislocated hips for four years, the child is six, and she refused to leave until they were admitted. And once they were admitted, they couldn’t see the surgeon because he wasn’t there. They refused to leave and sat there for 10 days until their child had the surgery. 

    Daniele: How did your organisation come into being?

    Amanda: We’re all parents of children with spina bifida or hydrocephalus that came together to advocate for better services for children, under the age of 18, living with Spina Bifida/Hydrocephalus in Ireland.

    Our group was formed in 2017 and have been trying to work in a proactive and collaborative manner with all relevant stakeholders since then.

    My own son was one of the children failed, he sat on a waiting list from 2014 to 2016, and by the time he’d seen a spinal surgeon in 2016, we were told it’s too late.

    So my son lives with inoperable scoliosis and he cannot be helped by this campaign or anything else but I wanted to do something to stop this from happening to other children. Una Keightley was one of the very first to come on board when we formally launched the paediatric advocacy group.

    Daniele: Una Keightley, what pushed you to take a more proactive role in dealing with the issue?

    Una: I suppose it did become quite apparent that no matter how many letters you wrote, like what Amanda had said, the situation didn’t improved. She wrote to everyone, she had highlighted it. And it just really concerned me. And I’m a health care professional. I’m a radiation therapist and it was just unbelievable to me that this was going on. And I suppose at that stage my child was younger when we came together. Once we talked to more and more parents we realized that people were actually lodging complains but they were going nowhere.

    So we started to proactively inform the powers that be and Children Health Ireland asking them to do something about it.

    Amanda: There is a cohort of children born prior to 2009 who had no access at all to this to the Spina Bifida team in Temple Street Hospital because there was no urologist on that team. So it was decided it was safer to leave the children in Crumlin Hospital and move them at a later stage. A urologist didn’t come onto the team at Temple Street until 2014, and the children were never moved. So a lot of our children were receiving inadequate services are no service at all.

    We highlighted this problem in 2018 with the CHI board. In that meeting, they asked us, our advocacy group, to go back to the families and identify whether they felt that they weren’t receiving a timely access to services or any services at all. So we did, which was a big job being undertaken because we’re volunteers.

    There was also a cohort of families who thought that their children were being treated but many other that did not.

    Una: In the beginning of 2019, we gave Children’s Health Ireland a list of 133 families and children who felt that they weren’t receiving a proper service. There was then so many e-mails back and forth between Amanda and CHI. We asked them: When can we meet? What are we going to do about this? And the answers were like: “We’re verifying the list.” “We are analysing the list.”

    We have screen shots of these emails.

    That one way communication continued for probably 18 months until, after March 2020 they just ignored us.

    Entering 2021 we felt we had to do something but, on top of that, I need to say that I suppose a lot of parents were fearful. If they talk out, maybe the care standard that would be provided to their child would be diminished. Now, I wouldn’t have that fear, and I don’t think any of us would.

    It was especially after Professor McCormack and Prof Connor Green had presented before the Oireachtas health committee in November 2021 that things were very desperate, that it became blatantly obvious that it was a systemic failure for our children.

    It was then when we decided to publish online our children stories. Which is something that distressed us greatly but we felt we were left with no choice.

    We had requested to meet the Minister ever since he took up office. He wouldn’t meet us. The Minister for Children wouldn’t meet us. The Minister for Disability wouldn’t meet us. Nobody would take up and highlight what was happening to these children. So the parents as a group decided that we were going to have to do something fairly drastic to get their attention. So that’s what we did.

    Daniele: I have noticed an increase in media attention to the issue in 2021, also thanks to your campaigning. Are you hopeful that increased scrutiny could move things in the right direction?

    Amanda: Yes, people now view our children as the vibrant individuals they are as opposed to a number on a list or a medically complex child that is unrelatable. The support received initially from media, County Councils, and local representatives across all 26 counties has been immense. This has stemmed from the proactive and

    drastic measures taken by the Paediatric Advocacy Group and the families to highlight the failures in care for their beloved children.

    People have been shocked by the current state of medical neglect that has

    been inflicted by the Irish state on our children. They are not willing to allow a further generation of children to be failed and to turn a blind eye to the historical neglect that has been allowed to happen.

    Daniele: After years of campaigning, countless letters to TDs and local councillors, you have finally met with Minister Donnelly along with Spina Bifida Hydrocephalus Ireland and other stake holders last February in relation to the abnormal waiting times that are now in place for paediatric orthopaedic treatments. Plans have been presented and funding – as much €19 million that the HSE made available to CHI –, albeit with little information on the specific break down. The Minister also set some clear goals, including to limit the waiting time to four months at first with the aim for this to be reduced to zero, and to provide a number of additional treatments. What’s the reaction from you and your organization to these pledges?

    Amanda: There aren’t many details released yet, and there is still a draft in formation. What they told us is that they have ring fenced €19 million for children with spina bifida, but also to children with scoliosis.

    They have also said that clinically no child should wait for more than four months for surgery. So that is very ambitious and while we’re glad about these pledges, we’re not blindly trusting. There’ve been promises made before not only to us, but to the scoliosis advocacy groups as well. So yes, the funding is great, but we need to see that the funding is going to make a real difference in these children’s lives.

    One of the government target is to “treat an additional 107 Spina Bifida cases” but we don’t know how they come up with that particular number. There is no database within CHI of how many children are living with the condition. So how do you come up with a number if you don’t know how many children you’re treating, do you know? So we’re a little bit dubious about it and we don’t want to be tied to that number. What we want is to fund and to reach as many children as possible.

    Daniele: Did the Minister agree to regularly update your organisation while they endeavour to deliver these pledges?

    Amanda: We do have a commitment from Stephen Donnelly and Children Health Ireland, to regularly engage with us and we do now have a contact with one of the Minister’s special advisers. So if an issue comes up or we want to speak to Donnelly, all I have to do is give the special adviser a ring and he will relay any information and if need be  we speak to the Minister directly. So that’s the promise we have. So we are we’re optimistic and he seemed very genuine when we spoke to him. But don’t intend to take the pressure off until this gets sorted. We intend to stay very, very focused.

    Daniele: Are there any kind of league tables or other international comparisons that can be drawn on?

    Una: It would be difficult because we have such a high rate compared to a lot of the world. What we do know is that in Ireland it is not the expertise that is missing but proper funding and organization. Cases are picked up in pregnancy here more than they are in other countries, probably because the stenographers are looking for them due to the high incidence.

    Daniele: What kind of challenges are you dealing with as mothers and what are the support needed for families at large?

    Stefania: My daughter’s name is Aurora and she’s just turned three. From her birth in February 2019 until August 2019 she was in hospital as she was born with Hydrocephalus.

    I found out about that on my 26 week scan here in Ireland and to be honest with you I didn’t know what it  meant so I had to do my own research. They didn’t explain to me exactly what it was. So I had to go back to Italy, and I went to the hospital in Genoa to try to get different opinions.

    Once she was born, here in Ireland, she needed to go straight for surgery because there was too much pressure on the brain because of these fluids. And so we got transferred first to Temple Street, and after two weeks to Crumlin.

    I just want to clarify that doctors and nurses were fantastic to me, to my husband and to Aurora. She wouldn’t be here if the surgery hadn’t been successful.

    Having said that there definitely gaps in the communication between the two hospitals. They were relying on the parents to get the information, which is not ideal because I’m not a doctor and that created frustrations and fears.

    When our daughter was released from hospital we were pretty much left to  our own devices. She had just one appointment in Temple Street during  her first year. And after that, I’ve been told that I needed to wait another year. Initially I thought that such a long time between visits was just because she’s doing well but It’s not the case. There was lots of information that I had to get elsewhere, and not from the professionals. In terms of psychological support for parents, we were very much left on our own. So you either cope and become resilient or probably you’re not going to make it mentally. I’m grateful I found this group and that these  ladies became my source of knowledge.

    Una: In terms of the financial support as well, like. Many of us received no financial support because our husbands or partners were too high earning So although your child has very high medical care needs – you could have a child who’s on oxygen 24 hours a day – you won’t get one penny from the government.

    Orlaith: In my case, my daughter is 20. We were under a multi-disciplinary team but with only three consultants in it. And after 2008, Crumlin finished up its spina bifida clinic. We then ended up being spread over four hospitals which don’t share files. So as Silvana said earlier, it is up to the parent to bridge the gap.

    When she was born she was very ill for the first four and a half months. We lived in the hospital paying for parental accommodation.

    I had my dream job. I worked in the Irish Times and I was part of the first team to ever bring in supplements into a broadsheet newspaper. I went on carer’s leave and eventually ended up leaving my job.

    There was no support for children with hydrocephalus. It’s not considered an intellectual disability. So, you know, you’re very much left on your own. My husband had a good job. I’ve never received Carer’s allowance after the first four or five months that we spent in hospital with her.

    When my daughter was seven they took away her medical card. In this country, when the medical card is taken away, your medical hardship scheme is directly attached. So a lot of the equipment you need you have to pay for it yourself.

    At nine she had three failed shunts, and two brain bleeds ending up spending nearly four months in Beaumont Hospital. I had to pay for my parking every day, for my accommodation and my food. Thousands of euros. I can’t claim back anything on that. And we still had to pay our bills and our mortgage.

    There’s a lot of stress around dealing with the child that’s sick and sure, you’re not failing your special child as you’re doing the best you can. On top of that, you’re fighting for everything. You’re fighting for therapy, you’re fighting for access to care, you’re fighting for basic things like my daughter’s incontinence and the allocation of nappies. It compounds into a heavy psychological weight. It’s not the disability alone, it’s the lack of support; the lack of access to timely care and that constant heavy worry all the time. They need help. I can’t get them help. I can’t force my appointments. I can’t force the consultant to do this or that. My daughter has now aged out of paediatrics and there’s no transition pathway. So now my job is going to my GP all the time. She had her first orthopaedic appointment in five years two weeks ago, and that took 16 adult consultants to refuse her before we got that orthopaedic consultant. So there’s lots of stress on you all the time.

    Here in Ireland, we have great nurses, we have great doctors, and I wouldn’t made it without them, but they’re not resourced and there doesn’t seem to be a willingness to accept we have such a high rate of these cases and that it needs to be invested in.

    Amanda: In the space of 18 months, my son went from needing care to becoming completely inoperable. For the first couple of years. He had a lot of appointments. Then it that stopped.

    My relationship with my partner deteriorated and broke down, very early on due  to the stress and the strain of trying to care for a very medically vulnerable child. I suddenly became a single working mother with two children, one with massive medical need and not financially supported by the state. I worked full time, paid a huge amount of rent. I’ve subsequently remarried and have gone on to have other children. Thankfully, my husband came into this with an open eyes.

    We wouldn’t change our children, what we would do and what we want to do is to change the services for them. They can become independent within their capabilities, and live their lives to the fullest without the need to be in pain or to have their parents struggling and fighting for services.

    https://twitter.com/BillyRalph/status/1458052402372923392

    Daniele: Over the last two years of pandemic, and with the HSE coming under cyberattack, your stress levels must have been almost unbearable. Having said that it is quite evident that these dysfunctions were there prior to these. How have you coped?

    Amanda: I’ve spoken to numerous families about this and we acknowledge that the pandemic and the cyber-attack happened, It was very scary and nobody had to protect our children more than we did.

    But what happened in the pandemic? The small amount of services and extra curriculum activities that our children were receiving stopped.

    Physiotherapists, occupational therapists were all redirected to COVID services and we understand the need for that. But there was also a huge recruitment drive by the HSE up thousands of health care professionals, like myself were ready to help but weren’t called up.

    We know now that during the pandemic, orthopaedics accident where less frequent so why weren’t our children’s needs met within this timeframe when obviously there was the space to meet them given the cessation of extracurricular activities?

    As parents,  we would call the pandemic and the cyberattack, the new great excuse for not giving us an appointment.

    Our children didn’t just freeze their conditions for two years or three years. You know, they continue to deteriorate.

    Stefania: My daughter Aurora, she has malformation of her ribs and she has never seen an orthopaedic surgeon in the last 3 years.

    It’s not that the doctors aren’t aware. Her Cardiologist took her case to his heart and did his best to advocate within Crumlin Children Hospital and he really fought for me but it’s not his job to organize a better multidisciplinary care structure.

    Daniele: That would be the job of the administration I presume. To conclude, how do you think Irish society perceives disability and how can awareness be promoted?

    Amanda: Irish people generally would be viewed as very laid back and positive.

    Therefore, there is an element that “disability cannot happen to me!”. It is only with an ageing population, inaccessible public transport, inaccessible housing, and educational facilities that the message is relayed to the ordinary person about how vast the inequality is between the non-disabled & disabled communities in Ireland.

    Over the last few decades Ireland has become a more diverse nation. Our children are exposed to more languages, ethnicity and religions than has ever been present on this island.

    These are the children of a new and inclusive Éire and as such, they do not have the same prejudices and intolerances as those who have gone before them. Our children living with disabilities are accepted by their peers and integrated more within society.

    It is deeply distressing for us that the relevant stakeholders within government and the Irish health care system, have not adopted the same attitude and continue to treat our children like second class citizens.

  • Notes from a Segregated Island

    Your antennae are up months before it comes. You’ve gotten to the point where, if Leo Varadkar says something won’t happen, you brace yourself for its certain announcement, in good time.

    When the axe finally falls, you’re on holidays in Donegal in July, and the uncomfortable reality sinks in that the house and the rain-sodden outdoors will have to do you, pubs and restaurants will have to wait. Because you’ve long known that the game that’s made its way onto your table – one of freedom by way of the barcode – is one you won’t play.

    There are many quiet tears across the country, many tummies in a familiar pattern of churning, as a new breed faces an uncertain dawn. They’re greeted, at best, with a wall of silence, at worst with opprobrium and unflinchingly entitled judgement.

    The air of suspicion they have increasingly felt around them, in a quietly charged atmosphere that has made it harder to be in the thick of things, even among some cherished family and friends, has become solid and tangible.

    And yet the day is like any other, the view from the window just the same. Nothing but a simple QR code and a biddable hospitality sector, understandably desperate to re-open its doors, signals the birth of a new Irish underclass.

    Considered Thinking

    Research shows that people have many reasons for declining a medical intervention. These are mainly born out of considered thinking: medical history and experience, including vaccine-injury; research and knowledge of what is right for their own body; the practice of natural healing modalities as a first recourse to health.

    Gym membership cancellation rates at the recent extension of medical segregation to that sector suggest that those who have a strong investment in their wellbeing through exercise may assess the risk/benefit of Covid-19 vaccination in a different way to those who may be more vulnerable to Covid’s worst effects.

    There is no one-size-fits-all. Such is life. If we believe that this turns a vaccine-free person into a walking biohazard, perhaps we have bought into fear over an inspected view.

    We are now some twenty-two months into a pandemic that has fundamentally shifted the course of our existence. It is fitting to ask whether, along with a potentially very serious virus, we have also been visited by a kind of collective trauma, stemming from news streams delivering non-stop daily scrutiny of Covid-19, along with rolling curtailments of our lives and those of our children. Never before has an idea of safety been so rigidly attached to a single concept: being Covid-19-free.

    Serious Illness

    I don’t make light of Covid-19. I know what a serious illness it can be, particularly for those who are older or have underlying vulnerabilities. However, in a new world characterized by fear and caution – surrounded by visual reminders that something frightening is in our midst – I believe that something vital to a healthy society is being dangerously side-lined: the checks and balances necessary to healthy democratic governance.

    We are in the process of enshrining into law a piece of primary legislation, the Health and Criminal Justice (Covid-19) (Amendment) (No.2), granting the extension of extraordinary emergency powers to Minister for Health Stephen Donnelly, powers that prior to Covid-19 we never could have countenanced handing over to the State.

    These extend the medical segregation that has become normalised in society, where the paradoxically named “immunity certs” – granted after double vaccination to access supposedly inviolable freedoms – are widely seen as a reasonable and proportionate response to pandemic times, rather than a human rights’ issue in urgent need of inspection.

    Do we wish to live in a world where a person can be stripped of their basic freedoms because of their private medical status? A world where the unproven threat of asymptomatic transmission is greater than the threat of authoritarian, technocratic rule?

    (One where, in perhaps the greatest twist of all, those who have retained their “privileges” are of course no less immune from the Covid transmission chain.)

    Do we wish to be part of a society where, for instance, a medically vulnerable person who is not suitable for vaccination is left out in the cold – because GPs currently have no authority to grant meaningful medical exemptions?

    Do we want to raise our children in a world where a person who exercises their right to informed consent, as enshrined in every human rights in healthcare covenant since Nuremberg, can be readily pegged as plainly reprehensible?

    Sins of the Past

    In Ireland, we are thankfully now alert to the impacts of the sins of the past – where the “othering”, for instance of women and children in mother and baby homes, was an accepted thing – yet are we willing to face uncomfortable truths about our present?

    At this moment, we have effectively “othered” a cohort who are subject to a particular kind of derision. Ireland’s vaccine rollout, which sees the highest level of coverage in the EU, has not transpired into the panacea promised. Despite this, we see blame at times verging on incitement to hatred publicly levelled at those who choose not to or cannot, due to medical reasons, avail of this medical intervention. The failure of the medicine is somehow the fault of those who didn’t take it.

    Even as reputable medical journals caution against stigmatising the unvaccinated, the vaccine-free are relentlessly pegged as the scapegoat of this difficult episode, where goalposts keep shifting and promised remedies fail to deliver. Those in power conveniently use this to deflect from their own failures.

    “Anti-vax”, a dehumanizing, broad brushstroke term, has become common parlance. Nothing short of a creeping obsession has developed towards a group stigmatised with this label, among some of Ireland’s most trusted, supposedly liberal media commentators, and among some of our most powerful political voices.

    Terminology that casually stigmatizes people has the twin impacts of eroding human dignity while effectively silencing dissent and debate – two essential tools of a functioning democracy. And if the ensuing social media outcry was anything to go by, many found it chilling to witness Minister Donnelly level this term at a fellow deputy in the Dáil chambers, for presenting peer-reviewed scientific information.

    Taking one for the Team

    While we can casually cast blame, without evidence, upon the cohort who didn’t “take one for the team”, those who should actually be answerable almost two years in operate without meaningful scrutiny from either a critical media or political opposition. And here, I believe, is where we should all be looking to.

    We have empowered Minister Donnelly to strip some seven per cent of the Irish population of their basic social and civil rights. If this legislation extends until its “sunset” of June 2022, we will have placed a minority of Irish society at the back of the bus for almost one year. And who knows how much longer they’ll even be allowed to travel on the bus? If past form is anything to go by, we might then expect another piece of similar legislation to follow it.

    I struggle to understand how all this is compatible with a liberal democracy. As medical segregation and the removal of human rights flourishes across Europe, and our social credit becomes increasingly tied to barcode-accessed living, at what point do we begin to seriously look at the potential harms of this brave new world, for which we are hard at work laying down the building blocks?

    A medical officer having the power of detention over you, in an undefined “designated place”, if you are merely suspected of having Covid-19, is not democracy. Coerced medication is not democracy, and the championing of Covid Certs by Leo Varadkar, on the basis that it drove up vaccination rates, only celebrates this lapse.

    When does Emergency Phase End?

    Decision-making that impacts everyone in Ireland, taken by a group of eight middle-class, middle-aged white men, who fail to represent the cross-section of Irish society, including those most vulnerable to the effects of lockdown – working-class people, women, and other minority groups – is not democracy.

    Almost two years in, it no longer holds for our government to act as if we are in the emergency phase of the pandemic. This ongoing abuse of emergency legislation and power is causing untold damage to the communities trying to stay afloat around it.

    There is evidence aplenty now to begin an assessment of the broad impacts of pandemic measures, and this must be done with independent expertise provided by those who have not been at the helm. The bigger picture must now come into view. We need to properly consider the economic, social/cultural and in the context of overall healthcare.

    I believe, special attention must be paid to Covid-19 policy impacts on our young people. Strategies need to be rebalanced towards carving out a future that allows us to respond proportionately to the threat of Covid-19, while maintaining people’s human and civil rights, their entitlement to dignity and privacy, and ending a nasty division that has crept in with terrifying stealth, in a time of crisis.

    We need solidarity regardless of medical status. Please stand with me to reach out to your political representatives to insist they convey our call to reject segregation and division, and to demand checks and balances from a government that many increasingly see as being power-drunk at Ireland’s wheel.

    Ciara Considine is a book publisher, singer-songwriter (Ciara Sidine), civil rights activist and mother of two, living in Dublin.

    This article was first published in A Mandate Free Ireland, a weekly campaign newsletter, on 13 December 2021 (Click here to subscribe: https://tinyurl.com/2p8kvmw7).
    Featured Image: Daniele Idini