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THE LAST TWO weeks have been a lot for many of the people we know and love at Inclusion Ireland. The final report of the Farrelly Commission was published, detailing the horrific neglect and abuse of “Grace,” a woman with an intellectual disability left in a foster home over many years. That was despite concerns over her neglect and a succession of sexual and physical abuse allegations.
We are reflecting on the re-traumatisation of survivors. 2000 pages of a report published with no warning. No accessible version was available for survivors to begin to comprehend. Very few answers and a lot more questions. The death of Pope Francis this week, then, of course, brings a complexity of thought and feeling for many. As a nation, we have yet to fully comprehend the long and sad history of our institutionalised past, one that is intertwined with that particular religious institution.
While we heard about Grace, we also watched public discourse around Autistic and Neurodivergent people’s experiences shift in the wrong direction. There was discussion about possible ‘trends’ in ADHD and Autism “diagnoses”, and questions as to the reasons for this. This type of “system focused “rather than “ people focused” conversation is ultimately unhelpful to Autistic and Neurodivergent people and does little to address the very real barriers people face in just living their day-to-day lives.
It’s clear now that the line from our past to our current thinking has got to be drawn. “Institutionality” is a deeply held belief or bias that institutions have the answers rather than people or communities.
Most people working in systems want to do a good job, they want to help people, but when things get pressured, resources are few and far between, and waiting lists are long, unfortunately, systems sometimes look for a scapegoat. In this instance, sadly, the scapegoat seems to be the very people the system purports to help, recreating a playbook as old as time.
We observe this with people painted in a negative light, with damaging rhetoric like “everyone wants a diagnosis these days”, or suggestions on social media that people want a diagnosis to get benefits.
The fact remains that the Government published its commissioned Indecon Report in 2022 spelling out in real terms how much it costs you to live your life if you are disabled. Many people with an intellectual disability face costs in their lives of up to €13,000 per year for transport, medicine, equipment, you name it. Many disabled people live in poverty. The idea that the “benefits” make you rich is insulting and just factually inaccurate. The idea that institutions have the answers, rather than the people with direct lived experience, is a story so familiar in Ireland. One we are slowly unpicking, but one we must stay vigilant to.
There is an alternative approach here that would be helpful — admitting out loud that we have vastly underfunded services and supports for our disabled community for decades, and starting the conversation from that point. It would also be helpful for the system to recognise that we live in a deeply ableist society, and acceptance and celebration of difference, whilst getting some airtime now, is a relatively new concept in Ireland. It is also essential that we admit institutionalised thinking is alive and well and must be recognised, examined and challenged.
Looking further afield, we see the same playbook in more extremity, happening in the United States with Robert F. Kennedy Jr. unleashing what can only be described as an outright onslaught of propaganda against the Autistic community. The message from RFK is that humans are only valuable if we work, we “give back” by paying taxes, if we speak verbally, if we play sports and if we reproduce.
We are valuable because we are human, end of, full stop. We are valuable if we have jobs, but we are also valuable if we never work. We are valuable if we need 24 /7 care to have a good quality of life, we are valuable if we are non-speaking. What happens when a group of people are de-valued is that automatically there is a group of people who are perceived as “more valuable”. They get to make the decisions, they get to have the power, they get to say whatever they want to say. In this kind of world, abuse is simply much more likely to happen.
The kind of rhetoric from RFK (and indeed from some people closer to home) is the exact kind of thinking which led to Grace being left in a foster home for 20 years, despite all the warnings from whistle-blowers. It is the kind of thinking that saw Grace as less valuable, therefore, she can be treated this way, therefore we can turn the other cheek.
We have a real opportunity to signal a sea change as a state with the publication of the new national disability strategy in the coming months. The strategy spells out actions and commitments across the whole of Government which are focused on the human rights of disabled people and how the state can actively work cohesively to improve people’s lives.
There are very committed people working on this strategy, there has been wide consultation. It has got to begin to address the very real exclusion of disabled children and adults. To be ambitious in the creation of the kind of communities we should all want to live in, where people are accepted exactly as they are and the state does absolutely everything in its power to support people to live their lives as equals in their own homes, in their own way.
The strategy has got to focus on the creation of systems where the voice of disabled people is central, to turn the tables of power for once and for all. The only way to avoid more abuse from happening is to hand back the power to where it belongs. Access to independent advocacy must be a priority for children and adults, legislation must be strengthened, and human rights have got to be the unwavering focus.
We should all have the great privilege to know the real joy of being in community together, the learning humankind could have if we were willing to value our differences, and value one another. This is the real lesson from the last two weeks. I hope we are all ready to learn it.
Derval McDonagh is CEO of Inclusion Ireland.
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