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WE ARE GRATEFUL to Charlotte Fallon and all the other advocates across the country who have brought to the surface the very real issues and experiences of our community.
The sad reality is, unless you are a person with an intellectual disability or a family member, you probably have no concept of what is going on. What was sparked last Friday in Kanturk is a national conversation.
Our hope is that all candidates are listening and will commit to putting disability rights at the beating heart of the next programme for Government.
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
One of the biggest portions of the disability spend is on people with intellectual disabilities, and yet we know too many are still living their lives in crisis mode. It’s clearly time to rethink how we invest in supporting people the way they need and want to be supported.
Ireland has a long, sad history of institutionalisation, the legacy of which lives on today in our culture, our attitudes and our beliefs, particularly when it comes to people with an intellectual disability and their families. As we congratulate ourselves on the closure of many of our largest institutions, our mindset has somehow remained stuck; and in this “stuckness” we are constantly in danger of repeating patterns of segregation, marginalisation and isolation.
We have refused to move on from a charity mindset when it comes to the fundamental rights of children and adults with intellectual disabilities, and this has led to appalling discrimination and sometimes abuse and neglect.
The hurt, pain and trauma facing people every day as they fight for basic therapy services, fight for a small amount of home support, fight, fight, fight, a lonely, weary battle, until eventually they give up, accept that this is all there is, stop dreaming about a better future.
We see families having to accept their five-year-old child travelling for 1.5 hours every day to school in a taxi past countless local schools. People with intellectual disabilities accept they will just have to stay at home with their families, even though they desperately want a home of their own. Families give up on accessing a small budget that would make their lives liveable. This lowering of expectations is the saddest stage in the cycle that we see repeated every day.
Institutionalisation is not really about buildings (although that is one important part of the discussion) — it is much more about how we see people, how we value people and what we accept for people as “good enough”. Institutionalisation as a mindset shows up in all sorts of ways, and if we are willing to see the pattern, we can never unsee it.
Children being called “too complex” to go to their local school, people living at home with elderly families with no plan for their lives when the inevitable happens and their loving parents pass away.
Institutionalisation also shows up in political choices; short-term charitable solutions rather than long-term incremental change and hope. It shows up in the language we use (who wants their home to be called a residential service or a centre?).
It shows up in our acceptance of the abuse and neglect of people with intellectual disabilities and their families. It shows up when we accept something for a disabled person (like living in a nursing home aged 40) that we would not dream of saying was OK for anyone else. The pattern we observe of outrage as another abuse scandal hits the media, followed by silence, followed by outrage.
It is deeply damaging and demoralising and tells us we have not faced who we are as a society fully yet, we have not learned, and we will continue this cycle of exclusion unless we have a deep reckoning with ourselves.
Loneliness is the biggest killer, we often hear that. The loneliness that comes from separating and excluding people is a profound wound. Maybe one of the deepest wounds there is. How do we heal this? Firstly, we have to recognise that what people with intellectual disabilities and their families tell us is the truth. Let’s not minimise it, let’s not ignore it. It is really happening right now, under our noses.
Recently, Ireland signed up to the Optional Protocol of the United Nations Convention on the Rights of People with Disabilities. In effect, what this provides for people is an opportunity (after exhausting all legal avenues in the state) to bring a case to the United Nations if they feel the state has discriminated against them. The act of signing the Optional Protocol gave people hope that finally their rights may be vindicated or at least their hurt seen, if not by our own Government, then by the eyes of the world.
How sad that this is our only hope. Why do we have to wait for shame from outside our country to spur us to action? Perhaps we need to sit in the horror of what we have done to people and then let that light a spark within us. It is simply the right thing for the state to do to invest in people; and give people equity of access to education, health, and basic but life-changing support.
We don’t need the UN to tell us that. We just need to recognise it is the truth, and it is something we must do if we want to live in a fair and just society. With just days to go to polling day this Friday, we urge you to talk to the candidates and to advocate for those in society who do not have their voices heard. We urge candidates to put disability rights where they firmly belong, at the centre of plans as we work together towards a more inclusive Ireland over the next five years. We hope that this is possible.
Let’s vote with our hearts on Friday, vote for leaders who understand our history and want to write a better story. It is beyond time to shake off our institutionalised past and step into a hopeful, inclusive Ireland.
Derval McDonagh is CEO of Inclusion Ireland.
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