The #JusticeForHarvey march on Saturday was led by people in wheelchairs. Some were children, others adults, all will have known a lifetime of fighting to obtain basic services in any kind of consistent way. Life for people with disabilities is very tough in supposedly progressive modern Ireland.
They have been failed – consistently, egregiously, and with devastating results – yet no-one ever seems accountable. The chaos and the suffering caused to children with scoliosis and spina bifida by the sheer ineptitude and dysfunction of Children’s Health Ireland (CHI) is a national scandal, yet it dragged on for years and under successive health ministers.
Children who desperately needed treatment were left on waiting lists, while other children underwent surgery who didn’t need it. Yet parents of the children left suffering who protested outside the Dáil as scandal after scandal made the headlines felt ignored by government TDs many of whom who didn’t even bother to come down to meet these families. At the time, one tireless campaigner and parent, Úna Keightley told me that: “The children are well aware they are being ignored, and to see them feel that level of disdain was dreadful. They felt the government TDs were such cowards, they wouldn’t even come and face them or listen to them.”
“A lot of the children are unwell and in pain,” she explained. “Some of them travelled long distances, and to make the trip was a huge effort given that pain and discomfort. The logistics of getting them there are a big challenge, it is not easy for these children. And then they were just ignored.”
She said that the government needed to face up to what was happening to children on their watch. “In the past abuse and neglect was hidden, and people said they didn’t know it was happening – but this is happening in plain sight”.
What’s more, Ms Keightley said that parents had long attempted to raise issues of concern with the government regarding difficulties with CHI. During a CHI Family Forum – an online zoom consultation – parents were shocked to find they had been muted on the call, allowed only to type in a chat box, for example.
Even more troubling, she also said that campaign groups had told Minister Stephen Donnelly’s advisor in June 2022 and again in July 2022 that they had concerns regarding what was happening with funding allocation for children requiring spinal surgery and asked that the Minister intervene. Their concerns were proven to be well founded as it was later revealed that “the majority” of a €19 million fund allocated to cut waiting lists for scoliosis surgeries was spent “far more broadly” by CHI, with Minister Donnelly describing the news as “deeply frustrating”.
He did not, however, address the point made by campaigners that they had raised red flags again and again in relation to that spend. Nor was there any satisfactory explanation given for exactly how the CHI were permitted to spend money they had received for these urgent surgeries elsewhere. It suggests the Minister has lost control of the system – but, again, who was held accountable?
There is obviously a widespread public understanding of the appalling mismanagement of these children’s cases – just as there is national awareness of the strong public promise made by former Health Minister and now Tánáiste, Simon Harris, when he pledged in 2017 that no child would wait more than four months for scoliosis treatment. At the march on Saturday, calls were made for Harris to resign, but will that happen and, and if not, why not?
If no-one is ever held accountable, how can we ever expect things to improve?
Former Democratic Left/Labour TD and Minister Pat Rabbitte – now in the extraordinary position of being paid to chair of Tusla since 2019 but almost never being held to account for that body’s enormous failings – previously said that breaking a promise made during an election was what parties tended to do. He later protested that his words were taken out of context, but its clear that when electoral promises cannot be relied on the effects can be utterly devastating.
The truth is that if we don’t demand accountability the abysmal track record of Irish politicians in regard to electoral promises will simply continue. Only a broken political culture simply allows this to happen again and again, rewarding those who breach said commitments by re-electing them rather than holding them to account. We’re actually rewarding bad behaviour, something every parent is told we should avoid at all costs.
One of the reasons I believe this happens is that politicians aren’t really that concerned, however sincere the furrow of their brow might appear, when the broken promises only impact a small proportion of the electorate. Thousands of children may need spinal surgeries, hundreds might be suffering on waiting lists, but that’s a tiny percentage of families overall. TDs can focus on what they feel is a priority for much larger sections of the electorate – a callous but likely accurate prediction.
Put it like this: if we had a referendum on the state’s treatment of these children whose spines are twisted to the point of causing daily pain and distress, there would be a landslide rejection of the government. But when it comes to a general election, people vote along party lines, or on benefits achieved for the constituency, or cast their vote thinking that avoiding a tax hike is more important than sending a message that a TD that makes a promise to sick children and then breaks that promise must be held accountable. And the longer this continues, the more said TDs will feel almost untouchable, despite the lacklustre results in the election. Hanging onto power is what matters, not losing a party candidate, and the party will take the hit of losing the 1% of the electorate who lives are grievously impacted.
I wish this were not the case, but I increasingly think it is. Political alternatives are growing, but slowly, and the electoral turnout is decreasing as the lack of accountability for broken promises continues. That needs to change. The only recourse children like Harvey have is if enough of us care about them to form a critical mass of voters for change.
It also needs to be emphasised that a moral judgment is being made when casting a vote. If we believe that the suffering inflicted on children by failing to provide spinal surgeries is unacceptable then we need to hold TDs to account. It’s not enough to feel empathy, we need to take action.
Already Pascal Donohue has been out to bat in defence of his Fine Gael colleague. “Simon and the Government have placed huge focus on how we support young children with scoliosis,” he said. The parents left desperately fighting for medical treatments for their children might disagree.
It’s not just people with scoliosis either: the Disability Federation of Ireland says that people with disabilities are four times more likely to live in consistent poverty, and spend up to 93% of disposable income on extra disability-related costs. Some are forced to live in nursing homes due to a lack of appropriate housing and supports, they added.
On Saturday, Harvey Sherratt Morrison’s parents said that his life was “painfully short” and that despite his urgent need for “timely access to healthcare” – and despite them “begging for help” – their little boy did not get the care he needed.
“Harvey was nine,” his mother said. “We had to watch him deteriorate, cry in pain, struggle to breathe, and lose the sparkle in his eye over those 33 months.” She said “It robbed him of his childhood.”
I was struck by something else she said, because its something I have witnessed so often in the heroic and unceasing efforts made by parents to get their children the help they need and are entitled to. Gillian Sherratt, whose child was buried just weeks ago, talked about providing her beautiful, beloved first-born son with everything the family possibly could – but that it was not within their remit to provide him with what he needed most: timely access to healthcare.
Her speech should be read aloud in Dáil Éireann. It is a devastating indictment not only of CHI and the healthcare system but of the electorate who excuse these broken promises when these politicians are re-elected, when they are not held to account. If Simon Harris feels that the electorate doesn’t care enough, he won’t resign. And what does that say about us as a people?
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