How does a deaf patient communicate with a doctor?
How do healthcare professionals communicate with a deaf person?

Most will write on a piece of paper, use hand gestures, or speak, either for the deaf person to lip read or for informal interpreters such as friends and family members who accompany the patient to pass on the information.

These methods may be useful in obtaining the patient’s medical history, but they bear inherent risks of miscommunication and potential misdiagnosis.

If the deaf person goes alone, things can go awry as communication proves to be a major hurdle.

Due to an acute shortage of Malaysian Sign Language (Bahasa Isyarat Malaysia, or BIM) interpreters during consultations, the deaf have poorer health outcomes and mistrust of the healthcare system.

Ideally, health communication should be conducted in a patient’s primary language, and in Malaysia, it should be BIM, which is recognised as the official language for the deaf under the Persons with Disabilities Act 2008 (Act 685).

“This privilege is often not extended to deaf patients given that BIM is a minority language in this country.

“There is also a severe shortage of healthcare professionals fluent in BIM to serve the deaf community,” points out Monash University Malaysia Jeffrey Cheah School of Medicine and Health Sciences (JCSMHS) biochemistry professor Dr Uma Palanisamy.

“To quantify this problem, consider this: for every 800 deaf individuals, there is only one qualified BIM interpreter available.”

Loosely based on American Sign Language, BIM has its own structure, grammar and vocabulary, and contrary to what people think, it is not a direct translation of a specific language.

Unlike in the United States and United Kingdom where healthcare professionals have the legal and ethical obligation to provide sign language interpreters during medical consultations, there is no such legislation in Malaysia.

These were among the findings of an ongoing research project titled The Healthcare Needs of the Deaf (HEARD), to tackle health inequality experienced by Malaysia’s deaf community.

Led by Prof Uma and her team of researchers at JCSMHS, along with other community partners, the research has also revealed that deaf people have lower health literacy levels compared to their hearing counterparts, putting them at a higher risk for health problems.

Furthermore, the team discovered that the deaf community delays or avoids seeking healthcare, and this is due to several reasons.

“A lack of deaf cultural and linguistic competence in healthcare professionals and a lack of legal protections for deaf people accessing health services were identified as significant barriers.

“The BIM vocabulary also doesn’t include all the signs needed to represent many health and medical concepts, leaving deaf people further silenced and disempowered,” says Prof Uma.

Neglected community

According to the Social Welfare Department, there are 46,127 registered individuals in Malaysia living with hearing impairments.

This underscores the urgent need for society to understand and address the formidable obstacles these individuals encounter daily.

Some deaf people can speak, some rely only on writing, and the majority use sign language to communicate.

JCSMHS adjunct research fellow Dr Anthony Chong was born deaf, but he is fortunate that he can read well and is proficient in both English and Bahasa Malaysia.

“When I go to hospital, I can read what the doctor writes and I pen down my thoughts back.

“However, most deaf people struggle with reading and writing.

“If deaf people don’t understand their medical problems, they obviously won’t have the knowledge or awareness of health issues,” he says, speaking through BIM interpreter Lucy Lim.

As the country’s first deaf doctorate recipient in anthropology and sociology from Universiti Malaya, Dr Anthony communicates using BIM.

“Most of the time, the deaf see a doctor without an interpreter because interpreters are not easily available.

“Some don’t know who can provide the services because not everyone is registered with societies for the deaf or involved in deaf programmes,” he adds.

He recalls a deaf female sex worker from Ipoh, Perak, who contacted him for advice due to multiple health challenges.

Dr Anthony, who is also the founder and secretary of Deaf Advocate and Well-being National Organisation (DAWN) asked her to see a doctor, but she had difficulty understanding the healthcare practitioner.

Eventually, she decided to forego her follow-up appointments.

“She got weaker progressively because she did not receive proper treatment or care.

“I really hope she is still alive,” he says.

JCSMHS research assistant Jennifer Ng chips in: “A deaf friend was on hypertensive drugs and stopped taking them because she thought she felt fine.

“Eventually, she suffered a severe stroke, which affected her entire left side.

“For a person who needs both hands to communicate, she found it frustrating and had to ask her husband to help.”

Dr Anthony himself suffered excruciating stomach pain once and was rushed to a private hospital.

“At the emergency department, they treat all patients the same regardless of disability.

“My friend who drove me there only knows a few gestures in BIM, and in my agony, I couldn’t write so I kept pointing to my stomach.

“It was an unpleasant experience, but thankfully, the doctor diagnosed my appendicitis correctly!

“I also know of deaf women who have contractions during labour and the doctor keeps saying, ‘Push, push!’ – how can she hear?” he questions.

On a positive note, Dr Anthony says he knows of a paediatrician who downloaded a sign language app and uses it to communicate with his deaf patients.

(From left) Prof Uma, Ng and Dr Anthony discussing how the deaf are neglected in the healthcare setting. — Photos: Handout

No privacy

Ng herself was born with hearing, but slowly lost it and became deaf during her childhood.

She had a cochlear implant and is now able to hear in one ear.

“Before my implant, whenever I went to the clinic, I would stand in front of the doctor’s room so that I could read the nurse’s lips to see who she was calling.

“With the doctor, I make sure he looks at me when he’s talking so that I can understand what he’s saying,” she shares.

Many healthcare providers are unaware that not all deaf people can read.

“They love to give out pamphlets, thinking it will help explain a medical condition, but it makes things even more confusing for the deaf as their health literacy levels are already low.

“It’s challenging for them to even go for a simple medical consultation,” says HEARD project consultant Elizabeth Chong.

It’s fairly common for a family member to accompany deaf persons to the doctor because there is an assumption that the relative knows their medical history.

Elizabeth says: “There is no confidentiality or privacy!

“You don’t always want your closest family members to know what’s wrong with you.

“Or family members could share too much sensitive information and dominate the conversation.

“They minimise how the patient actually feels.”

The assortment of problems deaf people face also contributes to their mental health decline.

In fact, studies have documented that the number of deaf people suffering from mental health issues are twice that of the hearing community.

But how do they seek mental health treatment?

“They have to take their own initiative to find help,” says Dr Anthony.

“Sometimes, family members may see their behaviour and think they are throwing a tantrum as that is common with a frustrated deaf person, or having a bad attitude.

“But it could be a mental health issue.”

However, he asks: “If the deaf person is willing to seek help and brings a BIM interpreter along, is the psychologist going to evaluate the deaf person or the interpreter?”

Dearth of interpreters

Sign language interpreters are a rare bunch because the profession is not recognised as a career here, so few are willing to make it their full-time occupation. Lim laments that there is no agency or organisation that registers sign language interpreters in Malaysia, so many deaf people don’t know where to seek such services.

Lim, who is among the country’s senior BIM interpreters, says there is no local tertiary institution that offers interpreter training programmes, although several organisations offer short-term courses.

“There is no registry for interpreters either, so among us, it is not known who has gone through a proper training programme.

“We can’t be called qualified, only competent,” says the president of Interpreters and Translators Association for Deaf Community KL and Selangor, an organisation providing upskilling training to interpreters.

Freelance BIM interpreters charge anywhere from RM150 to RM200 per hour.

So, even with the very low fees in the public healthcare sector, the deaf already have to fork out quite a bit just to access healthcare services, especially with the long waiting times involved in public medical facilities.

And for those who wish to access private healthcare, this would be a hefty added expense to the doctor’s consultation fees, hospital service fees and/or medication charges.

While the Malaysia Federation of the Deaf (MFD) offers BIM interpreter services in many sectors – not only healthcare – many deaf people don’t know how to access them.

The service is free from 8am to 5pm on weekdays for MFD members.

Non-members are charged a nominal fee to cover transportation costs.

Based on HEARD’s findings, the research team has come up with two solutions.

One is a mobile app called Deaf In Touch Everywhere (DITE), designed to facilitate seamless communication between health practitioners and deaf patients through live video conferencing with BIM interpreters.

It is currently in the testing phase.

The second is a unique module on deaf culture for healthcare professionals.

On the usage of the term “hearing impaired”, Prof Uma has this to say: “Don’t call them that.

“If someone is deaf, just say they are deaf; we want to educate people that the deaf have accepted it as their culture.”

Adds Ng: “The word impaired implies that I am broken.

“I am not born broken, I’m born to be who I am.”
Wellness,Deaf,Sign Language,BIM,healthcare,doctors
The deaf community in Malaysia face big hurdles accessing health information and healthcare services due to communication barriers.