This article won 2nd prize in eHomemakersLee Pei Sun fondly remembers a time when life was so good, almost perfect. As a truly radiant bride of 22, soon after, mother to baby Ping Toh and then, beautiful days basking in her dual role as dutiful wife and doting mother. She loved music and travel, held a steady job and her whole life was so promising.
These days, they are just distant memories that she desperately clutches on to as they try to fade away. Pei Sun now lives in a home for the disabled, abandoned by her husband and living each day looking forward to the monthly visits from her two precious children.
Pei Sun was struck with an incurable degenerating disease soon after her first child was born. Her cerebellum, located behind the front section of the brain, began shrinking. As the cerebellum controls the muscles of the body, Pei Sue began losing muscular co-ordination and became wheelchair bound. She was unable to care for her baby and her mother-in-law had to look after him. Pei Sun was forced to resign from her clerical job and became financially dependent on her husband. Three years later, her second son, Hong Hong was delivered by caesarean section.
What followed was nothing short of harrowing. As Pei Sun struggled to cope with her illness while caring for her children, her husband looked for a relationship outside their marriage. On her twenty-seventh birthday, he informed her that he was moving her to a home. Pei Sun was devastated. Added to the humiliation of being cast aside, she was given an ultimatum – to choose between her sons and maintenance. She chose her sons.
When she first came to the home, she spent hours crying. It’s been a year now and divorce proceedings are still pending. Her mother cares for the boys and Pei Sun has to depend on handouts and the generosity of her five siblings. She regrets being a financial burden to her family but she has little choice as she gets no help from her husband. She manages to earn a little money by selling newspapers.
Despite all she endures, she has the added anxiety that Ping Toh exhibits autistic tendencies. But Pei Sun is not defeated. She is grateful that her cousin brings the boys to visit her once a month. Sometimes, Ping Toh spends the night with her in her small room. He sleeps on a mattress on the floor and she amuses him with music from a radio. Sadly, she cannot cope with both her sons staying over.
Meanwhile, she wants nothing but the best for her sons and does everything within her power to brighten their lives. Although her disability prevents her from playing with them, she wants her sons to have happy childhood memories. She takes them to the playground and on shopping trips and indulges them with what little she can afford. She has even taken them to the zoo. It is cumbersome being limited by her wheelchair but she is completely focused on being a good mother for without her children, she has no reason to live.
Pei Sun's illness is relentless but she does not wallow in self-pity. In fact, as her muscles waste away, even her ability to speak is slowly being affected. Yet she preserveres, trying to prevent further deterioration, by faithfully exercising her muscles on a bicycle. The pain is always excruciating but she refuses to give up.
The young mother has also begun a computer journal recording for her sons to read some day. It focuses on her hopes, her dreams and her values so that the two boys will always be guided by her. Meanwhile, Pei Sun draws strength and solace from her religious beliefs. Yet it is her tenacity and resilience that makes her such a remarkable woman.
Source : e-Homemakers
Have you seen Pei Sun’s photos when she was younger? She’s a ‘leng lui’, (beautiful girl) you know. I have dressed her up beautifully with my clothes and applied make-up for her so that she looks stunning for her special occasion today,” says Cannies Tham, Lee Pei Sun’s caregiver at the Beautiful Gate, home for the disabled.
The girl seated next to Cannies dressed in a pretty blood red top and matching pants smiles at everyone around her. “Having seen pictures of her when she was a bubbly young girl and now, watching her confined to a wheelchair, unable to speak clearly and move her limbs, makes my heart ache. Despite the physical disabilities, there’s no denying that Pei Sun is still the same beautiful young girl in the photos,” says Cannies. And the minute Cannies speaks about her two young sons, Pei Sun sobs silently. Cannies turns to comfort her.
Recalling the first time she met Pei Sun more than a year ago, Cannies says, “You see how she cries whenever she thinks of her children? This is how she was when I first met her. In fact, it was worse. She was devastated that her husband was leaving her and taking their children along with him. And her family members did not want to care for her either. Her cousin brother contacted me and asked me to meet her,” she says. “I knew then that I had to take her with me to Beautiful Gate so that she can be in my care. I was afraid that in the state she was in, she might do something drastic to herself.” Cannies immediately returned to the home and proceeded to do the necessary to bring Pei Sun to Beautiful Gate.
“During the first month at the home, Pei Sun used to cry all the time. She loves her children more than anything else in this world and was terrified at the thought of losing her sons after the divorce,” Cannies explains. As expected, Pei Sun’s husband soon contacted Beautiful Gate to inform them of his decision to initiate divorce proceedings against his wife. “He told me that he doesn’t want to provide Pei Sun any maintenance and would not even allow her to visit her sons. That made me very angry,” she says.
Cannies calmly but assertively informed Pei Sun’s husband that his decision to abandon his wife would be unfavorable for him. “I told him that it was not Pei Sun’s fault. It was his fault because he now had a girlfriend and therefore, wanted to leave Pei Sun. I told him that the disease struck Pei Sun when she was pregnant with his child. She carried on with the pregnancy because of her love for him, despite knowing that it may be dangerous for her. Today, she is unable to work and fend for herself. I told him that the odds are against him and if he does not agree to pay maintenance and allow her visitation rights, I will consult a lawyer and matters could get worse,” this bold woman tells me.
It must have taken this petite 33-year-old a lot of courage to stand up to Pei Sun’s husband. And Pei Sun should be extremely grateful to have been blessed with a guardian angel like Cannies. After that ‘little’ informal chat with him, Pei Sun’s husband decided to pay her a monthly maintenance of RM200 and allow her to spend time with her 5-year-old and 3-year-old sons once every month.
Cannies’ good sense and her fight for justice did not stop there. She also contacted Pei Sun’s elder brother and advised him to visit his sister. “I told him that just because she was here at the home, it doesn’t mean that he should not visit her.” Cannies strongly feels that family support is very important to build a person’s confidence, especially when the person is either suffering from a chronic illness or is disabled.
As a welfare officer at Beautiful Gate, Cannies is unable to constantly keep an eye on Pei Sun. She has administrative duties to perform as well. “In the early days, I was worried about her. I told her room mates to look out for her. We always let her do things on her own so that she develops the confidence in her own ability,” she says.
Although Pei Sun’s physical condition is deteriorating day by day, her emotional and mental strength has improved tremendously, says Cannies. “Pei Sun’s main focus now is to get better so that she can be a full-time mother to her two boys. She exercises on the stationary bicycle to keep her muscles from wasting away even though it hurts her.”
Pei Sun’s cousin brings her sons to visit her once every month and the older boy stays with her for a couple of nights. She has a spare mattress and a radio to make them feel comfortable when they visit her in her small room. She squeezes orange juice for them even though it is an effort for her as her fingers are gnarled from the disease.
When they come to visit her, she goes out shopping with them, takes them to the park to play buy them little things that she can afford. “I like to tease Pei Sun when she takes her children shopping. I jokingly ask her why she doesn’t invite me to go along. It makes her laugh. I always keep our conversations light-hearted so that she feels happy all the time. It makes her forget her past, at least for a while,” Cannies says just before the emcee announces the names of all the winners.
Cannies beams with pride as she witnesses Pei Sun being called to receive her prize for winning the second place at the Special Moms Unite! 2006 contest. Much like a mother filled with joy to see her child winning a competition. “Congratulations!” she whispers to Pei Sun, as she proceeds to wheel her up to the stage. Pei Sun's eyes said it all, "Thank you, Cannies, for the tender loving care and attention you continue to provide me. My words will never be enough to express my gratitude".
Source : e-Homemakers
By LIM CHIA YINGCOLOURFUL displays of decorative lights, string quartets and carolers as well as cartoon characters will usher in the Christmas and New Year celebrations at The Summit Subang USJ.
The mall’s celebration this year, themed Summit Light Up With Love was launched recently, giving shoppers a glimpse of the line-up of events taking place throughout December.
Festive cheer: Ong (second from left) and Adzman Shah (left) with the residents from Beautiful Gate Foundation with the Christmas tree that they have lighted up during the event launch.
Launching the event was Kelana Jaya MCA chairman Ong Chong Swen and DTZ Nawawi Tie Leung Property Consultants director Adzman Shah Mohd Ariffin.
Special guests present were members from the Beautiful Gate Disabled Centre, orphans and children of single parents from the Compassion Home in USJ 1 and needy children from Subang Jaya.
Ong said the members from Beautiful Gate were role models in continuing to live a fulfilled life despite their disability.
Adzman Shah added that while the mall might have been a little frugal in decor this year, however, all efforts were still made to ensure that the festive atmosphere was still present.
“As the new management of The Summit Subang USJ, we are confident of bringing it to greater heights,” he said.
Following the Christmas tree lighting to mark the launch, the Beautiful Gate members performed several dance and singing performances on their wheelchairs, while the Compassion Home children touched the crowd with their soulful rendition of Malay, English, and Chinese songs.
Brothers Isaac Sathiya, 15. and Samuel Kuvinder, 13, from Compassion Home, said they had always enjoyed Christmas and to be part of the occasion at the mall made their day.
Christmas feel: The children from Beautiful Gate Foundation clapping to the performances on stage during the Summit Light Up With Love launch.
Isaac was brought into the home when he was in Year Four and Samuel when he was Year Two.
Both said they enjoyed schooling very much and that they did not have any special Christmas wish.
Meanwhile, a host of activities like Christmas bazaars, Christmas musical singing and dance performances, appearances by Santa Claus, various competitions, as well as mascots and cartoon characters of Ronald McDonald, Snow White and the Seven Dwarfs, and Fantastic Four are set to add to the merriment of the festival.
Under the new management, the mall would see a change in new tenants and also upgrading in different phases.
Sources: The Star
By OH ING YEENTHE disabled community will have something to look forward next year, Selangor executive councillor Ronnie Liu announced at the recent Dialogue with OKU (people with disablities) that there would be a special welfare programme for the disabled in the state next year.
The objective of the meeting was to provide a platform for people with disabilities living in Subang Jaya to voice out their problems and to seek solutions.
“This dialogue will be useful as we can use it as a reference for the programme,” he said, declining to reveal further information about the programme as it is still in the planning stage.
Disabled-friendly environment needed: Kok telling the difficulties he faces in travelling.
Also present at the meeting were Subang Jaya assemblyman Hannah Yeoh, Subang Jaya Municipal Council (MPSJ) secretary Slamat Hamzah, Social Welfare Department (JKM) officer Jama’eah Abdul Ghani, sign language interpreter Azlina Mohamad Isa, as well as MPSJ councillors Ng Sze Han, Gary Chong, Sapiyan Mohd Din, Rabiah Omar, Datuk Dr Subramaniam @ Mutu Nadarajan, Joseph Xavier and Chia Yew Ken. Agnes Lee, who is involved in rights for the disabled, was the moderator.
Preceding the meeting was a performance by members of the Beautiful Gate Foundation, which drew cheers from the audience.
Among the issues and suggestions put forward by the disabled and their caretakers were:
- Improvements at the Social Welfare Department in terms of parking and accessibility;
- MPSJ to rectify the inconsistency in the distribution of stickers for the disabled and caretakers;
- A government hospital in Subang Jaya;
- Education and job opportunities for the disabled;
- JKM to improve on its services; and
- Flexibility in banking in the allowance for the by the JKM.
Awesome: Performers from the Beautiful Gate Foundation drew applause from the audience for their amazing performance.
Alan Kok, who is wheelchair-bound, hoped that Subang Jaya could be a more disabled-friendly place to live in.
“Even if some buses have disabled-user facilities, I have difficulty travelling to the bus stop itself.
“We have a lot to offer; it’s not that we don’t want to work. We can work from home, and in jobs like translating and web-designing,” he said.
Citing the MBPJ Transit OKU as an example, some voiced the need for a similar mode of transport for the disabled in Subang Jaya as well as other municipalities. “This is so that the disabled can travel from one town or city to another without transportation problems,” said Bathmavathi Khrishnan of the Malaysian Confederation of the Disabled.
She also raised the issue of the need for a government hospital in Subang Jaya and for the public community halls to be more accessible.
Yeoh said while some of the issues could not be solved on the spot, the problems and suggestions would be compiled and looked into.
She added that flaws in the system would be highlighted to the decision makers for action.
She appealed to the media to highlight the need for employers to offer jobs for the disabled.
She also commended the caretakers and was choked with emotion when she related the experience of her bedridden grandfather.
“You are also taxpayers, you are also Malaysians, you deserve every right, just like all of us,” Yeoh told the members of the disabled community who were present.
Jama’eah said the process for the disabled to register with the social welfare department.
“You will be issued a card, which is like a licence, and it is useful when applying for financial assistance, OKU organisation membership, workshops and other benefits.
“For those who are bedridden, the representative can send the application on their behalf.
“A doctor will then verify the category of disability,” she said.
Slamat said that “OKU” should mean “Orang Kuat Usaha” instead of “Orang Kurang Upaya”.
“We will do our best at our level for sustainable planning for every- one,” he said.
“The issues brought up today can be resolved but it will involve various parties, such as the Social Welfare Department, Special Education Department, Works Ministry and other relevant parties,” Liu said.
Source : The Star
To prove that disability should not be a hindrance to earning one’s keep, a total of 30 physically-challenged participants showcased their business and artistic acumen at the Photography Exhibition and Disability Employment Aware-ness exhibition at the Sunway Pyramid recently.
Carrying the message, “Productivity Beyond Limitation,” the event was organised by the Beautiful Gate Foundation (BGF) to encourage people with disabilities to promote their products and services.
In her speech, the foundation’s executive director Sia Siew Chin, 42, pointed out that the exhibition was an awareness campaign aimed at highlighting the need for public and private bodies to provide employment for the physically challenged.
It was also to show the obstacles and barriers that are preventing the disabled from being financially and physically independent.
Art without hands: He does her calligraphy by strapping a brush to her right stump.
“When we talk about employment, we are not only talking about jobs, but it is a whole package that involves accessible transportation, housing, employment support system, accessible workplace and other facilities,” she said.
The exhibition, which also acts to symbolise the determination of people with disabilities (PWDs), is one way to acknowledge their capabilities and economic contribution.
The event, said Sia, was a concerted effort to provide a platform for PWDs to create business partnership opportunities in order for them to achieve self reliance and be economically independent.
One of the participants who lauded BGF’s effort was Chinese calligrapher, He Xue Mei.
The 38-year-old who lost both arms at work due to an accident in a fireworks factory at age 18, recalled that the first few months of her recuperation had been full of despair and frustration.
“In the beginning, I had to rely on others to do everything for me, but it did not take me long to realise that I had regained my independence.
“The process of relearning how to function without my hands and picking up a viable skill helped me to snap out of my depressive rut,” said He who hails from Zhuhai, China.
She went on to practice Chinese writing by strapping a brush to her right stump.
Today, the mother of two daughters aged 14 and 9, is a calligraphy teacher when she is not travelling.
“There has to be a sense of purpose in one’s life and this is not possible to have if you cannot sustain yourself financially,” said He.
Unique: Wong Sai Choo’s image of a woman cutting fruits won second place in the adult category of the photography contest.
Dealing with the question of employment has also led wheelchair-bound Raymond Teoh, 26, to the exhibition.
Teoh, whose forte is in web and graphic design, is now the creative director of his own company, At Home Creative, with another fellow PWD, Aw Yot Kong, 35, a graphic designer.
The duo promoted their latest line of merchandise, printed T-shirts carrying an environmental theme, at the exhibition.
“The last thing we want is for people to sympathise with us. Instead, we want them to appreciate us for our creativity,” said Teoh, who operates his business from a rented house in Cheras.
Also displayed at the exhibition were prize-winning photographs of a photography contest on the disabled. For enquiries, call Beautiful Gate Foundation at 03-7873 6579.
Source : The Star
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