Advocating for aphasia

For Mary O’Rourke, it is in trying to do the simplest things that she is once again reminded of how dramatically a life can so suddenly change. “Something will happen, and I’ll be dying to go home and tell my husband all about it. But then I realise I just can’t. Not in the way that I used to.”

The 70-year-old mother of three who lives in Ashbourne, Co Meath, has aphasia, a communication disability she acquired following a stroke six years ago, and a second stroke last year.

Aphasia affects a person’s ability to process and interpret language. Symptoms, depending on the severity of the condition, range from difficulties remembering words to losing the ability to speak, read or write.

O'Rourke's speech is slightly halting yet precise. "I feel we miss out on a lot," she says after a moment's reflection. "Our lives are not the same."

Taking action
It is a sentiment shared by everyone involved in the Aphasia Advocacy for Access Project, an initiative aimed not only at raising awareness of the condition but also at taking action to make life easier for those affected. The group comprises O'Rourke and four others with aphasia as well as facilitator Dr Caroline Jagoe, assistant professor at Trinity College Dublin's department of clinical speech and language studies.

We are sitting around a table in the TCD department, and the group is putting the final touches to its first advocacy initiative: the launch of its “Communication-Friendly Badge”, to be awarded to shops, cafes, restaurants and supermarkets that go about educating their staff about aphasia and training them to better serve the needs of people with the condition.

Mother of one Brenda Byrne (39), who had a stroke 11 years ago, recounts a painful experience in a cafe some four years into her recovery. “Dismissive” is how she describes the person taking orders at the counter as Byrne tried to get the words out to ask for a cup of tea. Already hugely self-conscious because of her condition, Byrne – herself a former manager of a coffee shop – says the incident forced her even further out of society.

Ever since, she has avoided cafes and public spaces where rushed interaction may be involved.

It is precisely this kind of incident the project is aiming to eliminate from the lives of people with aphasia and other communication disabilities. For its pilot project, the group collaborated with Cup, a café on Dublin’s Nassau St. Members explained to staff and management what it means to have aphasia; told them of their experiences, bad and good, in cafes and other public places; and made suggestions on how service might be adapted to meet their needs.

As a result, Cup now makes its menu available at the shop entrance so customers may study it before approaching the counter, and staff are open to going slowly through options and double-checking orders with anyone who appears to be having difficulties communicating.

'Safe' and friendly environment
It has the "Communication Friendly Badge" in its window, and the advocacy group hopes the logo will become recognisable throughout Ireland as an indicator of shops and restaurants offering a "safe" and friendly environment for those with aphasia.

“I hadn’t any idea of what aphasia was and how much of an effect it can have on people’s lives,” says Connor Clarke (23), who works at Cup. “You realise how it can happen to people in all strands of life – company directors, managers, anyone . . . You do think more about the customer coming in the door. And it could be anyone, not only people suffering from aphasia – it could be people who are hard of hearing, or where English isn’t their first language.”

Colleague Paul Kelliher (23) says the process “definitely made me more aware” and gave him a “new sensitivity” in the job.

“We need a culture of understanding,” says group member Séamus Greene (66), a father of three and retired principal at a secondary school in Swords, Co Dublin. Greene has progressive aphasia, a rarer form of the condition. He stresses the need to be listened to – and to be spoken to as a customer just like anyone else.

Nick Boland (57), a father of two affected by aphasia following a stroke, says he is lucky to have had only positive experiences in pubs and restaurants. The former company director and financial comptroller says the idea of the initiative is to “spread the word” and raise awareness.

Norman Daly (54), a former manager at Paddy Power, uses an aphasia app to help him communicate but, says group facilitator Jagoe, such technology may not be suitable to everyone with the condition.

She explains that while there are lots of changes made to buildings to accommodate people with physical disabilities, the same cannot be said about accessibility for those with communication disabilities. About 10,000 people have a stroke each year in Ireland, about a third of whom are affected by aphasia. Research indicates it is more common than Parkinson’s, says Jagoe, “yet people are far less aware of it than they are of Parkinson’s”.

On the community engagement initiative, she says: “It’s important to stress here that it is the group members who have come up with all the ideas and are involved in the training. I may know a lot about aphasia, but not about the experience of having aphasia in society. That is why it is so important that the group members themselves are the ones educating us.”