NOVEMBER’S GENERAL ELECTION campaign has been described by many political correspondents and political science experts as a somewhat lacklustre affair.

In an otherwise dull affair, one moment stood out, however. On Friday the 22nd of November – with just one week to go to polling day – Taoiseach Simon Harris had a brief encounter with carer, Charlotte Fallon in Supervalu in Kanturk, Co. Cork.

Fine Gael leader Simon Harris was approached during a canvass this evening by a woman who says she is a carer, and who said she believes the Government has "done nothing for us" | follow live: https://t.co/eUoCK3Qb5Y pic.twitter.com/MXiN9b60Ke

— RTÉ News (@rtenews) November 22, 2024

Charlotte Fallon, like many thousands of professional carers across Ireland, is employed in a two-tier health service. St. Joseph’s Foundation where she works, is designated as a Section 39 workplace – carrying out vital care supports on behalf of the Irish State.

Unlike her counterparts in Section 38 workplaces, Charlotte and her colleagues are paid less and do not have the same pension entitlements. They are paid less than their HSE peers for carrying out the same vital public services for Ireland’s disabled citizens.

Like the disabled citizens they care for, Section 39 workers are treated like second-class citizens in Ireland – which by definition is an ableist state. Ireland fails on all measures and indices of inclusion for disabled citizens – with social isolation, homelessness, poverty, suboptimal medical outcomes and unemployment key features of life in Ireland for disabled citizens and carers.

When Charlotte raised this issue with the Taoiseach, along with the related problems of recruitment, retention and quality of services for the disabled, he seemed irritated. There is no doubt that Ireland’s status as one of the worst countries in the EU to have a disability is an inconvenient truth for parties like Fine Gael and their erstwhile coalition partners Fianna Fáil and the Green Party.

On a personal level, Taoiseach Harris has direct lived experience of disability and the dystopian and unique nature of Ireland’s lack of human-rights legislation when it comes to disabled citizens. Having interacted with Simon Harris on many occasions, it is my personal belief that he is genuinely and sincerely committed to supporting disabled citizens. The unpleasant interaction he had with Charlotte Fallon was in my view, out of character – and he subsequently personally apologised to her.

‘A complete failure’

However, as a state, we are completely out of step with our EU partners when it comes to disability. Ireland is the only country in the EU where disabled citizens do not have the legal right to the services, supports, therapies and surgical interventions as set out in an assessment of need.

Our disability services are in complete free-fall and are in fact – as confirmed to me by the CEO of the HSE in the Joint Oireachtas Committee on Disability Matters – in complete failure.

As a consequence, hundreds of thousands of disabled Irish citizens and their families live in consistent poverty. Hundreds of thousands of disabled children and adults – like my son Eoghan – live in constant pain without timely, therapeutic access to therapies and basic medical interventions. Hundreds of disabled children are languishing on waiting lists for spinal surgery for scoliosis. Hundreds more are not receiving appropriate surgeries on the urology waitlist. The way disabled Irish children are being mistreated here is an international scandal.

I recently hosted a visiting group of surgeons – specialising in trauma and spinal surgery – at Leinster House. From the US, they expressed candid disbelief at the condition of Irish disabled children on the scoliosis and urology wait lists at CHI. They were incredulous that any disabled child would be allowed to deteriorate to the point that disabled Irish children and teenagers experience here.

I was told that if we put our disabled children into an aircraft and flew them to any paediatric hospital in the developed world – it would create an international scandal. ‘There would be outrage’ I was told at their appalling condition – and at the manner in which Irish disabled children and teenagers are allowed to deteriorate.

This is the scandal of our age. I am the parent of, and carer to a beautiful young man who has been consistently failed by the Irish ableist state. With a rare neuromuscular disease, my son had to wait until he was 17 to receive spinal surgery for scoliosis – a delay that made his operation unnecessarily risky. This was in no way the fault of our wonderful frontline clinical staff – therapists, doctors, surgeons, nurses and health care assistants – but entirely the fault of the management of the HSE, and the Department of Health.

Unmet needs

For disabled Irish citizens – children and adults – and for carers, our life stories are ones of unmet need. For me as a father, I worry constantly for my disabled son. I – like so many carers across this ableist republic – have been traumatised by the consistent and ongoing failure of the Irish State to meet even his most basic needs and rights as a young Irish citizen. I constantly fear for the future. I am robbed of my hope for his future – for his right – to live a fully autonomous, self-actualised and happy life. I write this with my son’s consent and encouragement.
To put it simply, Ireland is an appalling vista for disabled children and adults. The systematic and systemic neglect – and harm – to Ireland’s disabled citizens is the scandal of our age.
I have had 20 years to reflect on this neglect and harm. I cannot adequately explain the Irish State’s particular cruelty towards and neglect of our disabled citizens. Part of me believes it is to do with a deep-seated ableist instrumentalism in our society and polity – a view that disabled citizens have less ‘human value’ than other citizens. I recently watched the film ‘Small Things Like These’, starring Cillian Murphy. And I was struck by the depiction of the all-of-society dynamic of cruelty and hatred towards Irish women and girls in the 1980s. In the darkness of the cinema, I was equally struck by the insight that that very dynamic remains alive and kicking in the Ireland of 2024 when it comes to disabled citizens and carers.
So, in my personal, subjective view, the Taoiseach’s encounter with carer Charlotte Fallon – which went viral – whilst not representative of Simon Harris as a human being, was emblematic of the contempt that official Ireland holds for disabled citizens and carers.
However, I also believe that the Irish public’s reaction to the encounter may represent a fundamental shift in how we see our community of over one million carers and disabled Irish citizens. I dare to hope that the narrative in Ireland about disability and caring may be changing. To illustrate this, in my own personal experience, during the financial crash, my son lost almost all of his meagre supports and therapies due to austerity measures. In 2011, I contacted the office of the Minister for Health – in extremis – seeking help and support for my son. The reaction I got from senior civil servants in the Minister’s office was one of absolute contempt. One very senior public servant put it to me ‘So, essentially, you’re a queue jumper, you want to skip to the top of the queue’.

‘Skipping the queue’

When I responded that I was simply trying to advocate for my son and that I was shocked at his response, he simply responded, ‘So, we’re best mates now are we?’ You want me to be your best friend now?’. I felt sick. I felt humiliated. I felt that there was no hope for my son in an Ireland, where the top decision makers in ‘health’ were so hostile to the concept of the basic human rights, and medical and social needs, of a disabled child.

That hostility and contempt – at an official level – was improved dramatically in 2016 with the appointment of Finian McGrath as a Minister of State with responsibility for disability. With Finian’s appointment, at the level of government at least, the contempt of officials was replaced by a listening ear – and a sincere attempt to engage. The outgoing Minister of State for Disabilities, Anne Rabbitte, appointed in 2020 made sincere and valiant attempts to improve the lives of disabled citizens and carers.

However, some of her cabinet colleagues have persisted in the patriarchal and ableist view of disabled citizens. One minister in the outgoing government sought to introduce the Green Paper on Disability ‘Reform’ in 2023. This disgraceful document set out a policy that proposed the compulsory medical examination of over 225,000 disabled citizens in order to categorise them on their ‘capacity to work’. That shameful document – based on a discredited austerity measure in the UK which led to a spike in suicides among disabled citizens in England, Scotland, Wales and Northern Ireland – was thankfully scrapped by Simon Harris on his appointment as Taoiseach earlier this year.

Other cabinet members also sought to actively undermine the basic human rights of disabled Irish citizens and carers. In the Care Referendum, all of the government parties and the entire cabinet – campaigned for a wording on care that would have given constitutional expression to the notion that family members would have primary and almost exclusive responsibility for the care of disabled citizens. The proposed wording was also designed – on legal and ministerial advice – to explicitly deny socio-economic rights to disabled citizens.

Thankfully, almost 72% of the Irish public rejected this ableist wording. Over a million Irish voters – in rejecting this wording – demonstrated very clearly that there are votes in matters relating to disabled citizens and carers. The decisive rejection of the Care Referendum in my view, informed newly appointed Taoiseach Simon Harris’ decision to scrap the notorious Green Paper on Disability ‘Reform’ and to fully ratify all of the protocols of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

The UNCRPD was due to be fully ratified by Ireland on the 30 November, one day after the general election. I hope that these developments represent a fundamental shift in the Irish State’s toxic and ableist treatment of disabled citizens and carers. We need a radical campaign of emancipatory advocacy to fully liberate and empower our disabled citizens and carers. I hope that any newly formed government immediately prioritise disability and caring. As a starting point, any new government should immediately stop the means-testing of Disability Allowance and Carers Allowance. They should be universal, non-means tested payments.

I’ll also be pressing our newly formed coalition to fully support my Disability (Rights) Miscellaneous Provisions Bill of 2023 and my Disability (Personalised Budgets) Bill of 2024. If enacted by the next government, it would bring Ireland into line with the rest of the EU in relation to human-rights-based legislation on Disability and Caring. It would be a transformative moment for Ireland.

According to the WHO, all human beings become disabled – for an average of eight years of life. It is in all of our interests to end Ireland’s shameful treatment of disabled citizens and carers. Taoiseach Harris has taken some important steps in this regard. Following his sincere apology to Charlotte Fallon, I hope any new government follow his lead and transform Ireland – to make it the best country in the world for equality and accessibility. Is Féidir Linn.

Dr Tom Clonan is a retired Army Officer and former Lecturer at TU Dublin. He is an Independent Senator on the Trinity College Dublin Panel, Seanad Éireann.