‘They’re not stupid’: Her mission is to give a voice to people with aphasia who have lost the ability to speak

At just 40 years old, the last thing anyone would expect is to lose the ability to read, write or speak. But for one man, a sudden stroke left him unable to express himself and communicate with others.

This disorder is called aphasia, an acquired condition that impairs language and communication.

Speech and language therapist Evelyn Khoo, 47, recalled her patient’s frustration. For someone who had been fluent in at least four languages prior to his medical ordeal, the experience was nothing short of devastating.

“Seeing other older stroke patients in the ward who could still speak, he wondered why he was the only one with the problem,” she said.

His outlook shifted dramatically after he attended a Chit Chat Cafe session, a free pop-up cafe Khoo started. The cafe is one of the flagship programmes run by Aphasia SG, a non-profit organisation that supports individuals with aphasia.

At the free cafe session, which runs once every two months with the help of volunteers, people living with aphasia enjoy a cup of coffee, share some finger food, play games and engage in conversations – whether or not they can fully understand one another.

For the first time since his stroke, Khoo’s patient realised he was not alone in his struggles.

“I think he had a Eureka moment and realised that he could cope better with the knowledge that there are others going through the same thing, many of them around his age,” Khoo said. “I’ve seen how patients who come to the session, meet other individuals with similar challenges, and it just changes their worldview entirely.”

APHASIA IS MORE THAN JUST A SPEECH PROBLEM

Aphasia is an acquired communication disorder that impairs part or all of a person’s ability to use language. People with aphasia may have difficulty speaking, understanding others, reading and writing, though the symptoms, severity and impact can vary from person to person.

Most commonly caused by a stroke, aphasia can also occur after head trauma, brain tumour or infections, when parts of the brain controlling language are damaged.

About a third of stroke survivors suffer from aphasia, Khoo said. There are no local population studies specifically on aphasia, but it is estimated that as many as 3,000 people are diagnosed with the condition every year, she added.

Khoo stressed the importance of destigmatising aphasia, pointing out that it can strike anyone, even young people. In fact, her youngest patient with aphasia is just 23 years old, who suffered a stroke while on holiday and had to be medically evacuated back to Singapore.

Having seen its crippling and isolating effects, the speech and language therapist has made it her life mission to raise awareness and provide a voice for those who have lost their ability to communicate.

Khoo is especially troubled by the “common misconception that people with aphasia are stupid”.

“People often associate fluency with intelligence; we think that somebody who's eloquent is very intelligent. But a person with aphasia knows far more than they can express. They have a wealth of knowledge in their minds – they just have difficulty communicating it,” she explained.

Khoo uses an analogy to help others understand the frustration that comes with aphasia: “Imagine you don’t speak or understand Polish and you’re suddenly teleported to Poland. You’re handed a menu that has no pictures, only foreign words, and the waiter comes up to you speaking in Polish. How would you feel? How would you order your food?”

For someone with aphasia, this is not an isolated, once-off incident. “It’s their daily existence,” she said.  

AN INTEREST IN COMMUNICATION LED TO A LIFE-CHANGING CAREER

Khoo had always been fascinated by language and communication. After earning her degree in communication studies, Khoo explored several career options, eventually landing a marketing job for a company that works with children with dyslexia. It was during that time that she discovered the field of speech therapy.

Her first experience observing a speech therapist in action in a public hospital was eye-opening. The speech therapist was assisting an ear, nose and throat specialist with a laryngoscopy, a procedure that allows the larynx (voice box), vocal cords, and back of the throat to be examined.

“I think I nearly fainted (at the sight),” she said. “But it changed the way I viewed the profession – it could be ‘soft’ but also so medical and scientific. That really piqued my interest.”

Khoo went on to do a mid-career switch. She pursued a master’s degree in Science in Speech and Language Pathology then began a new career at a public hospital in 2012, where she worked closely with brain-injured patients, especially those recovering from stroke.

It was there that she developed a deep empathy for people who were cut off from their ability to communicate.

“I always imagine myself in their shoes,” Khoo told CNA Women. “To me, it's so heartbreaking that the person has all these thoughts, but they just cannot find the words to express themselves. It often leads to self-isolation and depression.”

THE POWER OF COMMUNITY SUPPORT AND CONNECTION

Witnessing the emotional and social toll of aphasia, Khoo founded Aphasia SG, together with a group of like-minded speech therapist volunteers in 2019.

Providing a platform for people with aphasia to meet and interact creates a sense of community and belonging – something that may not always occur in the clinical setting. Even if therapy improves communication challenges, patients do not always immediately regain their confidence or rebuild social networks.

“All of these can only be rebuilt when they go into the community, meet people with similar challenges, and are in an environment that is supportive. That’s when a lot of change happens,” Khoo said.

Besides the successful Chit Chat Cafe, the team also runs another initiative, Aphasia SG Choir. Guided by music therapist and musician volunteers, the choir members, some with severe aphasia, sing their hearts out at regular rehearsals.

Khoo explained that the language centres of the brain are typically located in the left hemisphere, but when one listens to music, “the whole brain lights up”.

Music bypasses the damaged language areas, engaging the right hemisphere of the brain. This allows the choir members to express themselves fluently through music and singing.

“They may find it hard to say the words, but with music, they can actually sing the words or lyrics,” she said.

CHANGING LIVES, ONE CONVERSATION AT A TIME

Both the Chit Chat Cafe and the choir rely entirely on volunteers, whom Khoo and her team train to facilitate “supported conversations”. This involves using strategies such as open-ended questions, clarifying when needed, and acknowledging the person's efforts, even if they struggle to communicate.

Besides difficulty in understanding words or conversations, individuals with aphasia can also have trouble writing in sentences that make sense, or spelling words correctly.

Khoo emphasises the importance of patience, respect and allowing the person to express themselves at their own pace – something she encourages everyone to do when communicating with individuals with aphasia.

For a start, she suggests slowing down and doing a mental count to 10 while waiting for a response.

“People with the aphasia still have their thoughts, so when you speak over them, or you complete their sentence, you take away their power to communicate,” she said.  

Khoo’s work with the aphasia community has also influenced her perspective on life. It has made her more aware of its unpredictability and fragility.

She is particularly moved by the dedicated caregivers who stand by their loved ones through thick and thin.

As a caregiver to her elderly parents, Khoo often reflects on the challenges they face: “Sometimes I wonder how they do it because I wear the caregiver hat too, and know it can be really stressful. Seeing them has taught me to cherish and appreciate the resilience and strength of human beings.

“We often read about heroic stories in the news, but seeing the day-to-day struggles that patients and caregivers go through, I believe we all have it in us to be everyday heroes,” she said.