RECENTLY, TAOISEACH SIMON Harris said in an interview that “systems are not where they need to be” regarding services for disabled people. Reflecting on this, it’s now clear that promises and pledges in manifestos need refocusing.
Shaping the new Programme for Government, there is an opportunity for innovation and joined-up thinking. Disability as a phrase is bandied about, though, as if it’s an abstract, disembodied experience. It gets thrown about by politicians, media and service providers as if it recently became part of the Zeitgeist. We saw it happen in the recent election.
Ireland is committed to equality and inclusion, mainly through fulfilling our ratification of the UN Convention on the Rights of Persons with Disabilities and, most recently, through alignment with the Independent Monitoring Mechanism established under Article 19 of the Convention. Ireland must now solidify and make real its international commitments by taking on a leadership role in implementing rights-driven disability policies.
Implementation is forever the challenge when it comes to international commitments and to national policy. Despite the existence of conventions, protocols, strategies and roadmaps, disabled people still lack guarantees of the meaningful, safe and independent lives of their choosing. The economy, business interests, balancing budgets, the needs of those with more power and influence all take priority and commitments made are consistently ignored and policies don’t get operationalised.
Often, disabled people are reduced to statistics — referred to in terms of beds or respite places. The focus must shift to empowering people, not perpetuating a system that fails to deliver dignity and autonomy. The dream, the concept of independent living, was sold to us over 30 years ago and still we wait. Rights must now come centre-stage, and in particular the right to our independent living, with choices and options.
The new Programme for Government must prioritise services for disabled people that enable such rights. Meaningful participation requires comprehensive investment in personal assistance (PA) support, accessible housing and assistive technologies. Without these essential components, the inertia and lack of progress continue. It continues at our expense, limiting our lives, diminishing our potential and ignoring our contribution.
When it comes to disability services, it needs to be recognised that the disability sector, in all its variations, is in crisis. It’s on its knees. The disparity of pay in Section 39 organisations within the (HSE) services makes recruiting and retaining staff impossible. These services and front-line workers are pivotal to providing essential community-based resources that offer the foundation for independent living.
Not living in an institution or nursing home was a fantastic idea. The plan was to build a life where your needed support was built around you like an invisible safety net. A person with an impairment had control over who they wanted to be in their daily lives. With energy and momentum, we take on this challenge with gusto. We do it because our friends have done it. It looks easy and feels radical. Then it all changes, or it never happens for some. You do without. Essential supports are cut to the bone.
Commitments and opportunities that were hard-fought are falling away daily. Your employer has some vague idea that you need support but doesn’t get into the nuts and bolts of your life. Your privacy is at stake. Your life feels smaller. The compromises get bigger each day. The day that the crucial conversation with your employer is inevitable. The indignity of your circumstances is overwhelming. The fear that all the cliches about people like me will be used to diminish my circumstances and my reality — lazy, incompetent, work-shy and many more.
The new Programme for Government needs to go beyond vacuous speechifying. It must change all this. Budgets must be aligned with the principles of the UN Convention. The right to independent living must finally come centre stage. The rhetoric that dominated the most recent election must be given meaning in the Programme for Government.
The Independent Monitoring Mechanism under the UNCRPD must serve as a crucial tool to ensure that governments are held accountable for implementing the Convention’s provisions and advancing the rights of disabled people. The Independent Monitoring Mechanism strengthens transparency and drives systemic change by providing oversight and collaboration between Disabled Persons’ Organisations (DPOs) and state institutions.
People can seek redress for rights violations, reinforcing international accountability and must be supported to do so. The Independent Mechanism needs to be adequately resourced and monitored for positive impact, in a human rights-based approach.
Progress requires listening, resourcing, and working with disabled people and our organisations. Disabled People Organisations’ expertise, rooted in lived experience and analysis is central to crafting policies that genuinely address systemic barriers. Without their leadership, reform attempts will continue to fall short. DPOs need to be fully and adequately resourced to play this vital role. They struggle with inadequate resources.
Disability activism teaches us that progress is possible but never inevitable. It reminds us that rights are not granted; they are fought for. Today, the struggle continues — not just for the promises of independent living but for the fundamental dignity and humanity of all disabled people.
Rosaleen McDonagh is a playwright from the Traveller Community and a disability activist.
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