‘It’s about rights, not charity’

A Cavanman is helping stir-up a grassroots revolution among people with disabilities with the aim of ensuring their needs are a meaningful and natural part of decision making processes and not, as stated during a recent Joint Committee on Disability Matters debate, a “tokenistic box-ticking” exercise.

Damien Walshe, chief executive, Independent Living Movement Ireland (ILMI), believes there is urgent need to ensure public investment is fully inclusive and designed to meet the needs of everyone. Central to this is the development of locally-based disabled persons’ organisations (DPOs).

“Disabled people can articulate very much what inclusion should look like. By and large it’s not rocket science,” says Damien, who acknowledges that people don’t purposely exclude the additional needs of persons with disabilities. But he says without “lived experience” certain perspective can go amiss.

“When we recognise it’s our attitudes and systems that disable people, and include their opinions at committee and design, only then do we move from on saying there’s a retrospective need to change things to immediately embedding inclusion from the start.”

The Ballyhaise native says having a disability or impairment is another part of the human condition. “It can be something you’re born with, that you acquire, or even acquire with age. Having impairment isn’t the issue. For us it’s how society is structured that disables people as equals.”

Damien previously worked the field of Equality and Human Rights with the Irish Traveller Movement as education policy officer on a variety of local and national projects. Initially his focus was on trying to influence inclusive education policies, but this later broadened to campaigns around equality and inclusion, including setting up the Yellow Flag initiative.

Though Damien has appeared twice before the Joint Committee on Disability Matters in as many months, he says he doesn’t “intend to make a habit of it”.

“It’s not that I’m a shrinking violet, but I feel it’s more appropriate that the voice of lived experience takes a lead.”

ILMI representatives have appeared before the Joint Committee on Disability Matters and other Oireachtas committees over the past three years. Local Sinn Féin TD Pauline Tully sits on the committee.

Specifically regarding assisted living, Damien told the committee its members in Cavan and Monaghan have had difficulty in accessing a personal assistant service “because there is no culture there”.

One member, he told TDs, were told there is “no such thing” in the region.

Damien told the committee: “It is completely dysfunctional. We have a situation where disabled persons in Leitrim can access a PA service but across the county border in Cavan they cannot access one because there is no service provider in place.”

Damien was also asked to address the difficulties in accessing services caused by rural-urban divide. His reply was that because there is no “standardised system”, it means disabled people live without knowledge or access of services that “could enrich their lives and give them that freedom”.

He stands by those comments, and his belief is the HSE needs to take the lead on defining a standardised system of access. The adoption of a “rights-based model” is critical, Damien insists.

“We often hear the term ‘post-code lottery’, but that’s what it is. In the absence of a system that applies equally everywhere, Cavan and Monaghan, because there hasn’t been a culture of a service there, it means people aren’t aware of it, and there’s no one there providing one. When we recently supported a member in accessing the service, they’ve had to go to a provider in Donegal.”

He’s hopeful the trend is “changing”, starting with more targeted investment in services and infrastructure.

While Cavan Town won a prestigious European ‘Accessible Tourism’ award for its progressive work on making itself accessible to visitors with a disability in 2013, Damien will be watching with keen interest the redevelopment of the likes of Abbeylands in terms of accessibility and a shared space.

From an ILMI perspective Damien says it’s “only relatively recently” the organisation has seen the delivery of “genuine, authentic collective spaces” led by disabled people.

“That completely shifts the conversation. There has been a reliance on really motivated, resilient individuals to raise these issues at a local area. We want to change that. We want to see more see people with impairment have their voices heard. Everyone wants to see the best use of public resources.”

Of Abbeylands, Damien says, it will be a “flagship space”, not just for people living in Cavan Town, but also for people visiting. “… and this is for any project like it. What you don’t want is a situation that you get to design stage and beyond only to find ‘not actually, this isn’t accessible’ and it then leads to delays. There have been instances, not Cavan thankfully, where local authorities have had to rip up public spaces to right a wrong.”

Damien recognises that shared public spaces are, in essence, “neutral up until such time as someone decides to put a step into it. Public spaces disable you by not having a ramp, or are unsafe because it includes cyclists moving at speed, which has an impact on anyone with a mobility issue. Safe inclusive spaces can have an impact for anyone,” he highlights.

Ireland still hasn’t ratified the optional protocol, which underpins Ireland’s commitments to the inclusion of disabled people under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). The State’s first report to the CRPD was submitted in 2021, and due to backlog and Covid, is likely not to go before the committee until 2024 at the earliest. Damien expects the government to make an announcement in advance of that regarding adopting the optional protocol as an “act of good faith”.

“It sends a message the State is taking its obligations seriously. There has been progress. But what we are coming up against is, for generations, society’s approach to disabled people has been guided by a medical or charity model to disability,” says Damien. “We didn’t have to think about public spaces, and we didn’t have to shift our attitudes towards disabled people, to view them now as someone who wants the same things as you or I take for granted - to go to college, have a job, have a partner, possibly raise a family, to travel freely, socialise, shop freely. To go for pint and not have to think will the pub have an accessible toilet?”

He concludes by saying the long-term aim is to establish DPOs in every county in Ireland, that would then link in with their Local Community Development Committee and Public Participation Networks, all the while using ILMI to guide them on policy issues.

“How do we ensure disabled people’s voices become the norm at these committees? What we’ve found is, both nationally and locally, that there’s a real appetite to hear that voice. As many of our members say, it is the one minority group anyone could join overnight.

It is also a minority group many of us know ourselves, either through lived experience or through family or co-workers.

“But when was the last time you saw disabled people on TV, or just talking about life? The rare time you hear about disabled people in the media is when they have to go as a last resort because of the lack of services. And it’s often done with a narrative that being disabled is the issue. In reality we’re trying to overcome an outdated system that segregates or divides.”