Social Ability Carlow/Kilkenny Effective Communication panel speakers (from left): Paul Crilly, Minister Finian McGrath, Paul Alford (Inclusion Ireland) and Grainne Cuggy Picture: Christopher Dunne
Understanding and honesty are two things listed by local man Paul Crilly as important to him in his quest to better the lives of people living with disabilities and lend a voice to those who all too often go unheard.
Paul, who has a mild intellectual disability, speaks with honesty and a great deal of insight about what he and others like him want to see happen with Social Ability Kilkenny — a group he helped establish in 2018.
Part of that involves, for example, getting to know people outside of their ‘role’ — the place they work, or whatever original way they have come to interact. Ultimately, he says, what most people want is friendship.
“It is people’s understanding of our own particular needs. Even going for a cup of coffee — some people think they are just ticking a box. That is not what we are about.” he says.
“We are about being honest and having real friendships. Not just ‘l will meet Paul Crilly and keep him quiet’. Or kick the can down the road without saying they will actually go. It’s awareness around that.”
Since it was founded, Social Ability Kilkenny has seen some changes to personnel in recent months. Grainne Buggy is now the group’s chairperson, while Judy Ryan is the nursing practice development officer. The latter had set up a group in Westmeath, and so the Kilkenny group contacted her a year and a half ago looking for a bit of help.
So, what is different now than from when the group first me?
“A lot has changed,” says Paul.
“Since Judy has come in, things have been better. She’s not in charge — she just supports it because she has an interest in self-advocacy and a background in intellectual disabilities.
“She has contacts in the midlands already set up; there is a speech therapist up there and ours in contact to see how it works. There’s no point in reinventing the wheel.”
Some of what Social Ability Kilkenny is trying to achieve is proving difficult in part because some people either aren’t interested in joining or aren’t being supported to join.
“We understand if people don’t want to, but we feel there’s people who do and they are not being supported,” says Paul.
“In the support group there are around 10 people at present. We do need more people to join the group. We’ve achieved a lot with the two of us, and we developed a workshop there a couple of weeks ago.”
That workshop, attended by outgoing Minister of State for Disabilities Finian McGrath, featured in-depth discussions of the big issues.
“Our aim was for people to have a better understanding of how to communicate with us,” explains Paul.
“I talked about my own life experience, and the Minister talked about the plan we have that was launched last year with John Paul Phelan.”
The Kilkenny group is currently looking for a facilitator to help them with their objective of developing self-advocacy for people with intellectual disabilities, and to form an organising committee.
“There’ll be a speech and language therapist who can come in an work with the facilitator to help the group communicate their message in the right way,” says Paul.
“We have to interview them and go through that to make sure we get the right person.
“There is only so much myself and Grainne can do. I want to explain to people why we are the main contact - it’s because there is no facilitator there, and the difficulty that not having one entails.”
Paul’s belief now is that the HSE should work around ‘person-centred planning’.
“There have been a lot of positives — the HSE are supporting the group with a speech therapist, and they allow us to make the decisions. I want to thank them for that,” he says.
Accessible information for people with intellectual disabilities is very important.
“They need it in areas they can understand — the writing is bigger, the pictures have to match the text, audio if you have it. Any restaurant. It is very hard to read the menu. If you say it to people they say it’s too much work, but it’s not. If you sit down and explain it, it’s not.”
Social Ability is expanding into doing work with Children and Young People's Services Committees so children with intellectual disabilities can get their voices heard.
“We are looking into people in special schools coming out and going to our meeting, or if they can’t come out, we’ll go in to them,” says Paul.
“Maybe on an annual basis. We are in discussions with the children service about developing that. We find that there’s some children with intellectual disabilities who come out of school and they don’t have the knowledge of what self-advocacy is, and they need to be taught.
“There are student councils, and we want to work with them and the teachers that support them. And invite parents, because they are the ones who speak up for them, and everyone starts working together.”