Book Review: Ordinary Stories in an Extraordinary World
Welcome to Irisada‘s blog. We focus on solutions and awareness for families living with differently-abled loved ones so they can live life to the fullest.
The power of a story goes beyond words on paper. When we share the narratives that make up who we are, we validate and celebrate the diversity of experiences and backgrounds that different people bring to the table. Today, we’re going to share a wonderful example, a book that highlights the joys and challenges of living with and loving a sibling with autism – ‘Ordinary Stories in an Extraordinary World’, by Aqilah Teo.
Love First And Foremost
The story of Aqilah and her brother, Jan (not his real name), sparkles with genuine, tried-and-tested love. The author does not shy away from describing the less glamorous aspects of living with her brother, but the book is threaded through with the awareness that this is simply who Jan is, that he has his flaws and his good qualities just like any other person, and that he is a beloved member of the family.
When describing a phase that Jan went through, when he was extremely sensitive to the positioning of things around him, wanting everything to conform to a particular order, the author shares that “This secret design in his head is one that is difficult, perhaps even impossible, to understand. All our family really does is play along pretending that we do.” (© Ethos Books) And maybe that is the essence of love – trying to understand, even when we can’t.
The Puzzle Box
This gives rise to an interesting paradox, one that many parents and caregivers might share, and one that the book brings out well. On the one hand, we wish to advocate for our loved ones, emphasising that they are not so different from others, and that we should celebrate those differences. At the same time, we cannot deny that things are harder for our loved ones with special needs. As the author puts it, “It would be difficult for me to argue for Jan to be treated like a completely regular person, yet at the same time ask for him to be excused from National Service or search for a special school or sheltered training centre with room to enrol him. This question is a puzzle box I have not yet solved.” (© Ethos Books)
Perhaps the answer is not to deny difference – or the heartache and frustration that often comes with it – but to accept and learn to embrace it, as many families are doing day by day with quiet fortitude.
The Ins And Outs Of Struggle
Reading this book might be an eye-opener for many in Singapore who don’t quite understand the invisible obstacles that block the paths of special needs individuals and their families. From dealing with public meltdowns to having to explain autism to National Service officers, the author points out the lack of understanding and empathy that the family has encountered time and time again.
The honest sharing of the everyday experiences of a family with a special needs child highlights the ways in which our society fails these individuals. She shares instances of being stared at and called out in public toilets when she accompanies her brother. Of store staff refusing to open a few minutes earlier to placate an upset autistic boy. Of strangers glaring at her brother for doing nothing more than being interested in their food.
We have a long, long way to go. But at the same time, the book consciously chooses to reject cynicism and fatalism, and to face the fight with positivity instead. The experiences of rejection and discrimination might well seem to be a nightmare, but as the family kept finding hope, “The nightmare warped and changed. It became a dream instead.” (© Ethos Books)
A Second-hand Perspective
As the author herself acknowledges, Ordinary Stories is a second-hand account of autism. She writes from her perspective as sister to an autistic individual, and inevitably is unable to understand what Jan’s world is really like from his perspective.
Towards the end of the book, the author shares insights gained from interviews with several professionals in the field of autism – a principal of a special education school, a doctor, an autistic adult, and a MP. Many of these perspectives are extremely helpful in the way they frame the issue. For example, the principal shared her pride in the achievements of her students, some of whom had even participated in the torch relay for the Youth Olympic Games!
Yet it is the interview with the autistic adult, Eric – given the pseudonym ‘the King’ in the narrative – that strikes deepest. Often, there is a gap in our understanding of autism. It almost seems that we have heard the perspectives of every possible stakeholder – educator, parent, sibling, clinician, activist – except that of the autistic person himself. Thus, the candid sharing from ‘the King’ – on his experiences trying to fit into an alien-seeming workplace with incomprehensible politics, on how his experience of the world can be compared to running different computer programmes – is a crucial contribution to a wider, fuller, richer understanding of the world of autism.
For a similar exploration of a first-hand account of autism, take a look at the Unspoken Documentary, a film co-directed by 14-year-old Emma Zurcher-Long, whose mission, in her own words, is to help the world see how potent, powerful and dynamic the life of an autistic teenager actually is.
Honesty, Struggle, Hope
In all, Aqilah Teo gives us a wry, thoughtful account of the everyday experience of a family, infused with patient love for a sibling who often isn’t accepted by the world around them. The framing of the book as a series of steps in a game of chess transports us into the fascinating, methodical, sometimes bewildering world of a condition nobody quite understands yet. And as we close the book, we are left with an enduring sense of hope, springing from a renewed belief in the unplumbed depths of love – “an unknown and incalculable quantity”. (© Ethos Books)
If you like what you’ve heard about Ordinary Stories in an Extraordinary World, you can register your interest in a pre-order on our website here.