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Aphasia Awareness

Writes Andrea Horgan

Imagine walking into your favourite coffee shop for a cappuccino and a natter with your friends for your weekly catch up or going for a few pints with the lads (when COVID-19 finally departs us that is!). Sounds nice, doesn’t it?

Imagine knowing exactly what you want to order, but suddenly nothing comes out. You know you want a cappuccino with a slice of carrot cake. Instead, you stand there trying to order with a queue of people behind you growing increasingly annoyed and you are becoming frustrated with yourself. Why can’t I say what I want? Why don’t I know what that coffee is called? This is an example of an ever-occurring problem for people with Aphasia.

We hear of stroke, traumatic brain injury and accidents causing life changing events, with people experiencing life altering physical disabilities. What we rarely hear about, is the life changing affects these events can have on the ability to communicate. Aphasia is defined as an acquired communication disorder that affects a person’s production or comprehension of language. A person with Aphasia may experience difficulties reading, writing, talking, understanding or using technology.

Around one in three people experience Aphasia following a stroke or traumatic brain injury affecting one or more of the difficulties mentioned above. Known as a hidden disability, the chances are, you have probably met a person with Aphasia and you didn’t realise it. People with Aphasia can become socially isolated within Irish society, with many experiencing a lack of confidence to communicate with others. This can cause people with Aphasia to avoid going out in public, going for meals with friends or doing everyday activities such as going to the Bank or post-office. They can feel as though their independence has been taken away from them because when those suffering from Aphasia go out in public, people can avoid engaging in conversation with them because it doesn’t meet their perceptions of how a conversation should flow.

To help to reduce feelings of social isolation associated with this communication difficulty, a group of UCC students from the UCC Clinical therapies Society, led by Rachel Boland and in collaboration with Dr. Helen Kelly, established Ireland’s first ever Aphasia Café back in 2017, right in the heart of Cork city in the Haven Cafe! The aim of the Aphasia Café is to provide an accessible, warm, and welcoming environment for people with Aphasia to come and chat with students from Speech and Language Therapy and other healthcare professions. This provides people with Aphasia an opportunity to practice their communication skills in a safe environment with trained students, staff and access to adapted menus (menus with short sentences, pictures and larger writing) and to also meet other people with Aphasia who have had similar experiences.

The Aphasia Café cannot be sustained without the support of UCC students who volunteer in addition to their own course work and other responsibilities. As such, keeping this café running every month was a challenge. However, last year the UCC Clinical Therapies society with students and staff; myself, Shauna Bell and Dr. Helen Kelly successfully revived the café, until Covid-19 struck. However, fear not. Where there’s a will, there is a way, and we brought the café online! With scepticism at first as to how successful this would be, we were fortunate enough to see uptake from people with Aphasia from all over the country and even further afield! People with Aphasia benefit from using a variety of modalities to communicate, including although by no means limited to, the use of eye contact, body language and using a pen and paper. With the move to the online café, this undoubtedly was a challenge to overcome as there were concerns as to willingness of people to get involved and practice their communication skills in this new way. However, the people with Aphasia attending the café have expressed gratitude towards those involved when we discussed the topic of inspiration. How privileged students must feel to support people with Aphasia to engage in friendly and enjoyable chats and banter without ever judging or becoming frustrated with patrons when a communication breakdown occurs.

With the move to online platforms becoming the norm for college, work and socialising, I’m sure we can all think of occurrences where we experienced breakdowns in communication, spoke over each other or didn’t know how to engage through this new medium of communication. This is no different for people with Aphasia who attend the online Aphasia Café. It was more important than ever that the students attending the online café remembered that it can be more difficult to communicate in this manner. It is pivotal to ensure you allow enough time for the people with Aphasia to process and respond to you along with balancing this with any technical difficulties which are likely to happen from time to time. Patience, understanding and using shorter sentences all played a crucial role in facilitating successful conversations in the online Aphasia café.

The Aphasia café, fortunately, has been ever-growing throughout the pandemic, with people from across the country reaching out and sharing their stories of feeling unheard, frustrated and misunderstood with their communication difficulties in Irish society. The Aphasia Café has subsequently provided an outlet for people with Aphasia to connect with others whilst separated from those they love during recent times. Our most recent café saw group members and their families express what they want others to know about Aphasia. They want you to be patient. They want you to give them the time they need to process and respond to you as if you jump in, you are interrupting their train of thought. They want you to know that their intelligence is in no way impacted by their Aphasia and that sometimes, it might take them a little longer than you to order your cup of tea, but that’s okay.

Aphasia is an invisible, but life-changing communication difficulty. It spans well beyond the effects of physical impairments following a stroke or brain injury. It affects everybody in it’s path, leaving often devastating social implications for those it meets. It doesn’t care about age, gender, race, ability. What you do can make the world of difference for people with Aphasia, and being a Good Samaritan always feels good after all!

If you or someone you know is communicating with a person with Aphasia (or any other communication difficulty), it is important that you don’t judge or patronise them. This could make them feel embarrassed for their communication difficulty. Instead, treat the person with patience and understanding. There might be long pauses in your conversation as the person tries to think of the word or form a sentence that they want to say. That is okay. Naturally, your first instinct may be to jump in and finish the sentence for them or to change the topic to break the “awkwardness” of the conversation. However, what you are actually doing is interrupting that person’s train of thought in processing what you have said and returning with a reply.

So, what can I do?

● Use facial expressions and body language when you are speaking

● Use short sentences. This will allow the person to process what you have said more easily, as you are making what you have said more accessible for the person.

● You should also consider other forms of communication rather than just speaking.

● Write down key points of the conversation or draw, be as creative as you want to be!

● The sky is the limit. Once you are ensuring the person with Aphasia feels understood and you match them with patience and speaking in an accessible manner, you can combat any communication breakdowns or feelings of awkwardness you may initially experience.

People with Aphasia are all unique. Every person’s Aphasia will seem different, with each person having their own unique story that they want to share. It’s up to you to support and listen to them in doing so. Through my time over the past year being involved in the Aphasia Café with the great help of Dr. Helen Kelly and Shauna Bell, we have met and gotten to know some wonderful people with Aphasia who have been so kind and generous enough to share their own stories with us in confidence. It’s like one big group of friends meeting up every two weeks to have a chat, express our anger regarding the latest political catastrophes and everything else in between.

To think there are so few people out there who are aware of Aphasia astonishes me. I, myself, hadn’t a notion of what Aphasia was until I had the opportunity to study it in college, and on reflection I am grateful I have been made aware of it. There are so many people out there whose lives have been devastated by the effects of Aphasia. As such, I think it’s about time society becomes aware of what Aphasia is and how we can play our part in supporting these people to finally feel included in their own community. People with Aphasia should feel welcomed everywhere they go. People should know how to communicate with people with Aphasia and support people with Aphasia in being independent communicators. It is their basic human right at the end of the day, and I believe it’s time we ensure this right is met to the best of our ability. If it were you, your friend, your neighbour, your family member, you would want everybody around you to support this person with Aphasia to feel comfortable to communicate with others within society. People with Aphasia are welcome within our society. It is time they feel heard in society and provided with adequate support and understanding to communicate.