Deaf and losing sight, she's blazing trail for people who are deaf-blind

Miss Loh getting a participant, who is blindfolded and wearing earplugs, to experience what it is like to be deaf-blind, during her talk on Jan 31.
Miss Loh getting a participant, who is blindfolded and wearing earplugs, to experience what it is like to be deaf-blind, during her talk on Jan 31.ST PHOTO: LAU FOOK KONG

Lisa Loh, who is deaf and losing her sight, plans a support group to get them out and about

A fever when she was less than a year old cost Miss Lisa Loh her hearing. Now aged 27, she is dealing with the slow but certain prospect that she is going blind.

But before that happens, she is trying to help herself, and others like her, cope with living with two devastating disabilities.

Together with the Singapore Association for the Deaf (Sadeaf), she is pioneering support initiatives for those who suffer from being both deaf and blind, or deaf-blind.

She has organised outings, given presentations using sign language to raise awareness about the condition, and plans to start the first support group here for the deaf-blind.

The situation was very different when she was diagnosed with retinitis pigmentosa, which causes a gradual loss of vision, about six years ago. She was depressed and terrified.

Fears and doubts flooded her mind: How would she live? How will she survive without a job? Who would take care of her?

What helped her come to terms with her condition was the realisation that she has time to prepare for a life without sight and sound. By her own estimation, she has about 20 years to go before she becomes totally blind.

She has about 80 per cent of her vision now and works as an accounts and administrative assistant at a firm distributing alcohol. She communicates with colleagues via e-mail, notes and simple gestures.

Miss Loh, who attended the Singapore School for the Deaf and has a business diploma from a private school, is single and lives with her parents. Her mother is a housewife, father a supervisor in an oil rig firm.

"I'm anxious and worried about my future, but I'm not as worried as before," she said. " I realised that worrying without doing anything does not help. It's a waste of time."

Another turning point came in 2013, when she was accepted for the Duskin Leadership Training programme in Japan, where she learnt about support services for the deaf-blind. The 10-month programme, sponsored by a Japanese foundation, trains those with disabilities to help improve the lives of the disabled around them.

"In Japan, the deaf-blind people I met are able to go out, enjoy music, enjoy different activities and meet their friends," she said. They are also able to communicate and participate in activities, with some even working - with the help of people who guide and interpret for them. There is also a host of support services for them, she said.

But in Singapore, the deaf-blind people she met were isolated. Some are totally deaf and blind, and others have varying degrees of blindness and deafness.

"They just stay at home. They are not trained to communicate, to have conversations. It's very sad.

"I want to start a support group, so they can do more than just stay at home not doing anything."

Some are able to let their families know of their needs only through rudimentary gestures.

One example is a woman in her 30s born deaf-blind who did not go to school and is unable to communicate. Her family could only use gestures, such as bringing food to her mouth so she knows it is time to eat.

Miss Loh and Sadeaf have organised trips for the deaf-blind to the Science Centre - and even to fly kites so they know what it is like to feel wind against their faces.

Four deaf-blind people went for each of these separate outings, the last of which was in June last year.

Miss Loh also wants to train volunteers to act as interpreter guides.

In a talk at Sadeaf on Jan 31 , she explained, through a sign language interpreter, how the deaf-blind communicate using tactile sign language, where the deaf-blind person places his hands on the hands of the signer to read the signs through touch and movement.

Another way is through finger Braille, where an interpreter taps characters on the deaf-blind person's fingers, following the rules of Braille.

"Seeing deaf-blind people in Japan lead independent lives gave me hope that we too can have happy lives," she said.

A version of this article appeared in the print edition of The Sunday Times on February 07, 2016, with the headline 'She is blazing a trail for people who are deaf-blind'. Print Edition | Subscribe