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‘I have never treated myself as disabled’

SINGAPORE — She has conquered many obstacles in life, but the contempt and prejudice of some strangers remains the greatest stumbling block for Ms Oh Siew May, who was born with cerebral palsy.

Ms Oh Siew May was born with cerebral palsy, but that did not stop her from writing a book, Scaling Walls, which was published in 2009. Photo: Wee Teck Hian

Ms Oh Siew May was born with cerebral palsy, but that did not stop her from writing a book, Scaling Walls, which was published in 2009. Photo: Wee Teck Hian

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SINGAPORE — She has conquered many obstacles in life, but the contempt and prejudice of some strangers remains the greatest stumbling block for Ms Oh Siew May, who was born with cerebral palsy.

“I’ve had people scold me because they cannot understand what I am talking about. Sometimes, I don’t understand why people can’t be a little more caring and patient,” she said.

The permanent and non-progressive condition, in which damage to the brain affects one’s muscular control and body movements, has resulted in an uneven gait and speech difficulties for Ms Oh.

The 45-year-old grew up in a family that was mostly trying to make ends meet. Her mother battled illness, her father worked two jobs, and she has a mentally impaired sister.

Despite these difficulties, Ms Oh tried to live as normal a life as possible and did not allow herself to be limited by her condition.

She took up track and field as a co-curricular activity during her days at Saint Hilda’s Secondary School.

In 2005, she climbed Mount Kinabalu in Malaysia, training for the expedition by scaling 25-storey apartment blocks in Toa Payoh three times a week. Three years ago, she completed a 7km run.

“Since (I was) young, I’ll get up and walk whenever I fall down. I don’t like people to look down on me. In school, the PE teacher was worried that I might injure myself during PE classes, but I wanted to try everything,” said Ms Oh, who recently developed a love of rock climbing.

The spirited woman has also authored and published a book, Scaling Walls, detailing her life story, with the support of her friends. Launched in 2009, it has sold about 10,000 copies.

“Many people think that if you’re born disabled, you are ‘unable’. I wish to tell them not to look down on us. We were born like this, we don’t have a choice. Try to put yourselves in our situation,” she said, soldiering through a face-to-face interview despite her speech difficulties.

Cerebral palsy affects one in 2,000 babies worldwide and is the most common childhood physical disability.

In Singapore, the most typical causes of cerebral palsy are premature birth and brain malformation before birth, said Dr Janice Wong, honorary secretary of Cerebral Palsy Alliance Singapore (CPAS).

People with cerebral palsy usually have muscle weakness affecting their motor functions to varying severity, added Dr Wong, a paediatrician at Thomson Paediatric Centre.

They may have difficulties walking properly or are not able to walk at all, or have difficulties using their arms and hands. Some may also experience speech or learning problems if other parts of the brain are affected, she said.

LEARNING ABILITY NOT NECESSARILY AFFECTED

A common misconception about individuals with cerebral palsy is that they are also intellectually challenged.

Whether the learning ability of a child with cerebral palsy is affected depends on the severity of the brain injury, said Dr Wong.

According to her, about four in 10 children with cerebral palsy have normal intelligence and are attending mainstream schools equipped to cope with their usually mild motor disability.

“These children can lead a normal life academically, socially and engage in occupations suitable to their abilities,” said Dr Wong.

While there is no cure for cerebral palsy, certain medications and Botox injections may help alleviate tight or stiff muscles and improve limb movements, said Dr Wong.

Intensive therapy remains the mainstay of managing the condition. Early intervention programmes, which aim to improve mobility, provide aids and help the children navigate their learning differences, are available at voluntary welfare organisations such as CPAS, which has served more than 600 beneficiaries this year.

Ms Jessie Holmberg, CPAS’ executive director, said the focus on early intervention stems from evidence on neuroplasticity, which refers to the brain’s natural ability to change and adapt.

“Early motor intervention programmes aim to improve the cognitive and motor skills of infants or young children. Gross motor skills include rolling, sitting, crawling and walking, advancing to skills such as running and hopping. Fine motor skills include those developed early in an infant’s life, such as reaching and grasping, to more complex hand skills necessary for self-care tasks and play,” she said.

“The first few years of life, in particular, are a critical period for neuroplasticity, when the brain is most likely to respond to good-quality motor and other experiences.”

According to Dr Wong, the goal of therapy is to provide the best quality of life to individuals with cerebral palsy, by helping them learn functional skills for independence, enjoy their childhood, play sports and even work in a job they like.

But even with the necessary skills, Ms Oh said one of the greatest hurdles people with disabilities face is getting a job. Understanding employers are even harder to come by.

Currently working as a sales assistant at Bollywood Veggies, a farming collective and organic growing education centre in Kranji, Ms Oh has encountered her fair share of discrimination in the past while trying to make a living.

She has worked as a packer and stacker at a supermarket, clerk, and trainee florist, and once ran a pushcart business in a mall.

Once, she was humiliated by a receptionist who refused to believe she was called for an interview. Ms Oh stood her ground and eventually completed the interview, but did not get the job.

“Not many companies are open to employing the disabled. But I believe if we work hard, employers will find joy in hiring us. If only people can be aware that disabled people have feelings too and are able to work if given a chance to do so,” said Ms Oh, adding that she is fortunate to have met her current employer, who hired her after reading her book.

The recent exploits of the Singapore athletes at the Rio 2016 Paralympics could also create more awareness and understanding of people with disabilities, she said.

“It will allow people to know that being disabled doesn’t mean ‘unable’. We will still try our best to get things done,” she added.

In the midst of writing her second book, Ms Oh said one of her dreams is to “help people to see light in life”.

She hopes to create more awareness and job openings for the disabled. Most of all, she dreams of a day where people with disabilities “will be understood and accepted” by society.

“We don’t need pity. We only need compassion and love from others,” she said.

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