More Than Words: Facing an Unseen Disability With Hope
Communication - the ability to comprehend or express oneself, is fundamental to everyone. But what if one day, your ability to process verbal information is compromised? If you could no longer say the words you want to?
This could happen to someone with aphasia.
Aphasia is an impairment of language caused by damage to the brain. It can affect a person’s ability to speak, write or understand words. People with aphasia may confuse words that sound similar or have a related meaning. For example, when you say, 'I got a new cat,' they could interpret it as 'I got a new dog.'
Its severity varies based on the extent of the brain damage, and it’s a disability that cannot be seen. One could be standing next to a person with aphasia and not recognise their struggle with this disability.
More than 2,500 individuals are diagnosed with aphasia in Singapore annually.
59-year-old Anthony Choon is one such person. After undergoing surgery for a brain tumour in 2022, Anthony realised he could not speak the words that used to flow effortlessly. He couldn’t even ask the nurse for coffee or state his own name.
Persons with aphasia face challenges because of their communication difficulties. Speech therapy is one of the recommended treatments. Evelyn Khoo, a speech therapist, realised that more needed to be done to help these individuals after an encounter with one of her patients.
“We went out to order food, and he got stuck while trying to order. The store owner couldn’t understand him and was a little impatient. I could see the helplessness in my patient’s eyes,” shares Evelyn.
Seeing him paralysed with fear, Evelyn stepped in to help. She realised that her work needed to extend beyond the clinic.
It is crucial for people to understand what aphasia is and show more patience towards someone grappling with this unseen disability. Living with aphasia is not just about the frustration of not being understood, but it can also lead to psychological impacts such as changes in identity and social isolation.
“Imagine if you lost the ability to speak your first language fluently. It really impacts a person’s identity and confidence. Many of them start to socially isolate because they don’t feel like they are the person they used to be,” shares Evelyn.
This inspired Evelyn to start Aphasia SG, a non-profit organisation that provides support to persons with aphasia and their caregivers to alleviate them from this isolation.
The organisation is run by a dedicated team of volunteers. Through Aphasia SG, Evelyn hopes those impacted can find a community that empathises with them, fostering an environment free from judgement and fear.
“I think it’s important for there to be a support network for people who need support,” says Evelyn, “I hope that anyone who has aphasia knows that there is a community that they can seek support from.”
Anthony learned about Aphasia SG through his speech therapist and has found joy in being an active participant in their community events. These events include the virtual Aphasia SG Choir and Games and Craft Night, as well as the bi-monthly in-person Chit Chat Cafe, bringing together persons with aphasia, their caregivers and volunteers.
“Volunteers are the heartbeat of the organisation. They support the conversation around aphasia,” says Evelyn.
These volunteers come from all walks of life. While some have experience in speech therapy, there are also students eager to grasp a deeper understanding of aphasia. What unites them is their desire to bridge the gap between persons with aphasia and society.
Anthony is glad to have a community that understands him.
“I feel this community understands each other, and it motivates us to stay strong,” says Anthony.