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Few of us in Singapore have much to return to from our childhood, even fewer would have fought as hard as Hidayah Amin to preserve what she holds dear of her heritage.

When Hidayah was born in her family home, Gedung Kuning at Kampong Glam, her grandmother, following an old Malay custom, planted a mango tree in the compound to commemorate her birth. That tree became a fond childhood "companion" for Hidayah. Growing up, it was a playground for her and the other children, a source of delicious fruit and even a shelter for the times she felt down.

The tree survived more than 2 decades, even after the family home was acquired by the government, before it was unceremoniously chopped down in spite of Hidayah's best efforts to have it named a heritage site.

It was a revelation which Hidayah found hard to swallow. She would have made the effort to relocate the tree, if she had known that plans to have it remain where it was had fallen through. The lament became a driving force for her to write about her time at Gedung Kuning, the house that was home to her and her extended family for a good part of her childhood.

Now, her story of The Mango Tree and what it meant to her, has been immortalised in a beautifully illustrated children's book. Flipping through the pages, the story made so much more alive by the drawings of artist Idris Ali, the simplicity of the message touched me both as a charming story of an era gone by as well as a testament to Hidayah's admirable persistence in safe-guarding the memory of her childhood. There is a stubborn refusal, against all odds, to not allow her heritage to be washed away. It makes for a compelling story, especially in a fast paced society as ours, where there is hardly any time to develop an attachment to our natural surroundings. Hidayah's books serve as a reminder of a connection we had to our environment just a few decades ago, and will prove to be a valuable record as our city tirelessly reinvents itself.

We spoke to Hidayah and found out more about why she feels so strongly about keeping the memory of her mango tree alive.

Biddy: How does the whole thing make you feel when you look back on it? Were you angry when they chopped down the tree?

Hidayah: I was traumatised, I cried for 3 weeks non stop. I couldnt work; think.

Biddy: You did not expect it?

Hidayah: When i emailed the MHF, no one had the guts to reply. So i had to write to the press. They could have told me that they will cut it, but instead they cut it and then told me, when there was nothing I could have done.

Hidayah: So many, you should read the book, it's all there. Its not abt me and the tree, it's abt heritage. Preserving what is impt to us. I don't accept cutting the tree to make way for tables n chairs.

Biddy: What message do you hope to convey of heritage through the book? And has writing it provided you with any closure??

Hidayah: Writing is a form of therapy for me, some people think i m taking revenge. But I felt I had to write to remind others not to take things for granted. The environment is important too, this is what i wrote in the book - A wise man once said, “A people without the knowledge of their past history, origin and culture is like a tree without roots.” The tree is symbolic of our heritage. The roots of the tree signify our foundation, our past history. Without the past, we will have no future.

Biddy: So why a children's book?

Hidayah: The story is in my other book Gedung Kuning book, Cik Idah's Mango Tree. The children's book is a continuation and elaboration from my childhood stories. My relationship with the tree. The mango tree is a children's book as I wanted the young ones to learn early. The earlier they understand this importance, the better. The theme of the book launch is abt nature.

Biddy: Do you think it's harder for the current generation to understand your attachment to the tree and heritage at large?

Hidayah: Perhaps they may not understand, surely, they must have loved a tree or plant or .... kids play in the garden, playing in the rain, sitting under tree. Even if they don't understand, perhaps they will when they read my story.

Biddy: Do you have anything to say to the public and the young ones about heritage and the world around them?

Hidayah: My second last paragraph in the book reads - "The death of my mango tree reminded me how temporary things are in this world. That is why it is very important to preserve our heritage as once it is lost, we can never get it back."

Find out more about the Mango Tree here.

I experienced my first protest when I was an undergrad in Australia, more than a decade ago. A group of my university's students took to the streets to protest the rise in school fees. I meekly followed behind, enthralled by the spectacle, but shackled by my upbringing, unable to partake fully in the roar of voices.

"Only crazy people with a personal grudge against the government protest. And then they go to jail."

Growing up, it is what many would tell me at the mention of the word. We were fed with imagery of violent protests in our history books and perhaps more damningly, by our own kin and kith. It is the type of fear that is so ingrained, it becomes part of a distorted common sense, till we are no longer aware that it is fear that has led our gaze away from those who have demonstrated for our rights.

And as I tagged along the picketing group that day, I felt jolted out of reality, my own reality anyway, and into something more authentic. My youthful and inexperienced heart may not have been as involved in the causes or aware of the realities of civil society, but my programmed bias against protest and dissent were dashed that day. I saw then that protests can be orderly, they can be empowering and they inform the public, who look upon protesters with a variety of expressions other than wide-eyed terror. I remember distinctly as I walked back to my rental flat that day, that I WANT this, I want to see this in Singapore, MY country. Not protests per se, but this empowerment to speak out.

" No to 6.9 million", the nation's biggest non-partisan protest held at Hong Lim Park today, was not like that protest I witnessed so many years ago.

It was BETTER.

7000 strong turned up, umbrellas in tow, some brandishing creatively tongue in cheek banners.

Speakers from all walks of life led the crowd into fervent cheers as they expressed their displeasure at the suggested population size of 6.9 million in 2030 by the White Paper. If the turnout for the political rallies during the elections were signs of an awakening, the response for this protest, indicates that the country is now more than just awakened, it is ready to stand up and work for our collective future.

And nothing embodied that more than the response toward organizer Gilbert Goh's offensive article the night before, where he made a list of "traits", based on nationality, of the 1.8 million foreigners currently in Singapore. This is not about Gilbert's perceived xenophobia, but how the online backlash, within hours, resulted in the article being taken down and Gilbert Goh graciously apologizing on the event's page for his insensitivity.

Something amazing happened there. Many who thought of attending the event, staked a claim in how they wish to be represented, and through the mad rush of concerned, angry feedback, the anti-xenophobic stance became an emblem that branded itself throughout many of the speeches and into our consciousness. We may not be able to flush the White Paper's plans down the drain, but we managed something much more precious today, we defined a distinctly Singaporean value through our actions, something policy can never deign to cultivate.

While there will be those among us who revel in xenophobic rhetoric, it is heartening to know that there are enough of us who refuse to let that ugly side of human nature be part of a larger national voice, though the temptation is always there. It is also inspiring to see the acts of apology and forgiveness pushed forth by an understanding that the event and what it represents is bigger than any single person.

The Singaporean core that had been eroded by bloodless policies and political paralysis was replenished today. Thanks to willing hearts like Gilbert, who works against all odds to deserve the phenomenal success of the event, regardless of his mistakes, and those who attended for setting a precedence that no one can ignore even if they try their best to. On a personal front, thank you my countrymen and women, for fulfilling a wish I hardly thought would come true, let alone be surpassed by the magnitude of heart and spirit present.

I am so proud today to be Singaporean, more so than I ever have been.

By Biddy Low

Like a flash flood after a long drought, elections and the excitement that it brings have descended upon this nation over and over by the heavy hand of fate. By this second by-election for Punggol East, there is almost an embarrassment in getting swept up by the hype, for fear of being viewed as naive or worse, a vapid follower of a madding crowd. So I disengaged at the beginning. I am not a political pundit, neither do I have lofty ambitions to make a name for myself by jumping in the fray at any chance. My reasons for being involved and informed have remained the same as 3 years ago, to be a "kah kia" ( helper) anyway I can in what I consider a fledgling awakening for democracy in this little island I call home. A democratization process that I believe goes beyond what the politicians are doing, and right into the consciousness of every single person here.

The Mah family spends their off days like most in Singapore. They would bring their 3-year old daughter, Chloe, and her younger brother, Cayden, out for a swim or a walk in town. Little Chloe is especially excited when they do. A keen curiosity for the world beyond home has developed, where once it was a task to even bring her out of the bedroom to the living room, the couple now finds it hard to pry their darling first-born out of the car when an excursion is over.

Conventional routine, for a rather unconventional family.

"Some members of the public would shun Chloe when they see her in a wheelchair, or cast uncomfortable looks. Sometimes they even pass comments behind our backs, like we must have done something bad in our lifetime, that's why our daughter turned out this way," Patricia recounts in our interview.

Diagnosed at 7 months with Pompe disease, Chloe is the first documented case of this rare hereditary illness in Singapore. Doctors had given her a few months more to live, before her first birthday. But through sheer will and what the couple can now only attest to as a miracle, little Chloe has lived through 3 birthdays and is making vast improvements, requiring only minimal use of respirators and other machinery which she relied heavily on as a baby to stay alive. In those trying initial years, Patricia and Kenneth started a facebook page and documented the process, partly asking for funds and partly to spread awareness of the disease.

Chloe is not the only case of rare disease in Singapore, but because these disorders are so few and far between in occurrence, it has proven to be an uphill battle for the couple and others like them to find financial or emotional support. "The hospital staff were stumped when they first realised that they might be dealing with a case of Pompe disease, no one dared to do anything till they got in contact with a foreign specialist." Afterwards the doctors painted a grim picture for the couple should they decide to pursue treatment. Chloe's situation was exceptionally difficult, because treatment for Pompe disease needed to begin at 3 months. At 7 months and with an enlarged heart that threatened to fail, her chances were slimmer than ever. Still, the couple decided to take the risk. They enlisted the help of Professor Chen Yuan-Tsong, a specialist in the treatment for Pompe disease and Chloe became the first Singaporean to receive ERT treatment. You can read about the professor's story in a previous publichouse.sg story.

Though the couple earned a decent living, the staggering costs of Chloe's treatment, even after help from the hospital's endowment fund, remains a heavy burden.

Currently, monthly expenditure averages at $20,000 on Chloe alone. The couple is unable to receive help from the government because they are not considered a low income family. Means testing with which the government decides if they are eligible for financial aid, failed to see that that the expenditure required for Chloe's treatment far outweighs their earnings. Apart from KK's endowment fund, there are no other associations that they can seek help from.

"That is why we started the Rare Disorder Society (Singapore) (RDSS), to create a louder voice so that there will be more awareness and support for families like us," Patricia explains. The problem with rare disorders are that the patients are treated as unique cases and not viewed as part of a community. Without the power of numbers behind them, essential needs are overlooked. The issue of funding aside, the lack of training in rare diseases hardly prepares hospital staff for cases like Chloe's. Patricia remembers an incident where she and Kenneth had to resuscitate Chloe themselves as the paramedics were not familiar with handling her. A dangerous situation for families who may not have a caregiver at hand.

Through RDSS, Patricia and Kenneth hope to bring attention and in turn a more holistic system that bears those with rare disorders in mind, not just in terms of financial aid, but through educating the masses on their attitudes toward those who are different. What the couple and I'm sure any parent wants is an environment in which their child can feel accepted and be confident enough to find happiness. A person is only as handicapped as society makes him/her out to be after all.

In a country such as ours, decidedly Asian in values, meritocratic in aspirations, the line between able and disabled is clearly drawn. Yet the story of Chloe, though arduous and challenging, is exceptional not in its misfortune, but in the the triumphs that came with it.

When asked how Chloe has changed their lives, Patricia and Kenneth were open with their answers. Before Chloe arrived, they described themselves as pragmatic people who knew nothing of rare diseases, let alone the spirit that allows one to fight against it. "It's only rare, till it happens to you." Patricia tells me. But turning the negatives into positives came from a strength neither knew they had. What Patricia hopes now, through their efforts, is to build a society that enables Chloe and others like her to live with their strengths and not force them to focus on their weaknesses. A piece of advice many of us can benefit from.

Kenneth's transformation from a archetypical male of the family, initially doubtful of his wife's choice to pursue treatment, to the now zealous stay-at-home caregiver, is a remarkable story in itself. "He owned a business while I worked a salaried job," explains Patricia. "And we decided that it would be better for him to wind down his business, which did not promise a stable income, and stay home to take care of Chloe." Bucking the trend, and his own upbringing and understanding of being "the man of the house", Kenneth believes he is a different and better man because of Chloe. He was recently given a Caregivers' award and is tremendously proud of the achievement. "I've learnt to enjoy the process, not look at the end result," he reveals, enjoying each day with Chloe, watching her blossom under his care.

There are friends of the family who still question them on the sacrifice. What is the point for them to spend so much time, money and effort to keep her alive, when the disease could claim her anytime anyway? The couple admits that before they had Chloe, their sentiments were not far from theirs. Chloe in many ways, opened their eyes to a new and far more fulfilling way of viewing life, where money is secondary to kinship and instinct. Patricia remembers one night when Chloe's heart had stopped, and how she was revived just as Patricia yelled out her name. " Call it maternal instinct, but I saw it in her eyes that day that she wanted to live." It was this instinct that strengthened her resolve to proceed with the treatment. And it is because of this instinct that 3 year old Chloe was lying on the couch next to us, enjoying an afternoon nap with her little brother.

We often hear, in moments of loss, how one would willingly give up their fortune, even shorten their lifespan, just to have a loved one by their side a while longer. Kenneth and Patricia are doing just that, except that they are leaving no room for regret, because for all their sacrifice and effort, they earn another priceless day with Chloe and help pave the way toward a better world.

Find out more about RDSS on their website or facebook page.