Of late, as I read books on autism, I realize that my understanding of what inclusion means for those with ASD (Autism Spectrum Disorder) and other special needs and disabilities is still so infantile! That realization fills me with angst, anguish, and yes, even anger. Not to mention a heavy dose of regret as I look back on how I have raised my 12-year-old son with ASD.
But more on that later.
First, let me resume this occasional series on ASD Book Reviews with one of my recent finds.
This is the first time I’m reviewing an ASD book written, edited, and published locally. It’s also the first time I am reviewing a groundbreaking collection of essays written by 22 contributors (and compiled by three editors). Each contributor comes at the issue of disability and inclusion from perspectives as diverse as those of parents, educators, researchers, lawyers, artists, and of course persons with disabilities.
Clearly, I won’t be able to do an essay-by-essay review here. There are just too many to cover!
I can only single out three that stood out for me. However, if you get a chance to — especially if you’re my fellow countryman who cares about disability and inclusion here — you should totally check out this wonderful compilation yourself.
And read all 22 essays!
Not Without Us: Perspectives On Disability & Inclusion In Singapore (2023) (Essays edited by Zhuang, Wong and Goodley)
Synopsis
The global disability rights movement’s slogan (which came into being in 2004) — Nothing About Us Without Us — was the inspiration for this book’s title. It’s the first time a concerted attempt was made (beginning in March 2020 and resulting in the publication of this book in January 2023) to assemble in one volume contributions by stakeholders in the disability and inclusion space here. Through this, the editors hoped to grow and direct disability studies, and expand the critical knowledge of this issue for the sake of crafting how disability research could and should look.
The book is divided into three broad categories, each with six or seven essays. These categories are Lived Realities and Identities, Visibility and Expression in Arts and Media, and how we may work Towards An Inclusive Society.
Allow me to pull out an essay from each to review, in hopes it’ll give you the flavor and curiosity to pick up a copy of the book for yourself. (In case you’re wondering, no, unfortunately, the editors aren’t paying me to promote this book!)
#1 Lived Realities And Identities
Essay Title: Rethinking Disability With Justice — Grief As Resistance From The Margins
Written by A. R., a working-class person with ASD studying Engineering at a local university.
Going only by the initials A.R., this writer shares authentically about her lifelong struggle as a minority-race/religious female who grew up intermittently non-verbal and who only much later was diagnosed with ASD.
She talked about how, throughout her life, she slogged to “pass” — strategized to appear before others as “normal” — but suffered tremendous bouts of anxiety and depression as a result. Peppered throughout her piece were honest revelations of some of her low moments. Such as the time during COVID-19 when she went for six weeks without speaking. This happened after visits to five different doctors, who offered unkind consults when she was seeking a diagnosis for her troubles.
This is by far one of my favorite essays in the book. The writer spoke frankly (in often lucid details of her struggle), sometimes too frankly for most to stomach.
But in her struggles and grief laid the strength to keep advocating and championing what she is convinced is a non-disabled society’s neglect for those like her. In particular, her expositions in this essay on ableism (society’s bias towards the able-bodied) and disability justice (a movement against ableism) are very much needed.
Quote:
I never want to move on from my grief. I never want its intensity to fade. It fuels me to keep fighting and living and spitting in the face of nondisabled society. Small things have become sacred to me…Grief pushes me to keep reaching out to others….nothing else is truer to me.
#2 Visibility And Expression In The Arts & Media
Essay Title: “He’s not normal”: Representations of Disabilities on Singapore Television
Written by Dr Aaron K.H. Ho, an academic specializing in research on Minority Studies (Race, Gender, Sexuality, & Disability)
In his essay, Aaron talks about how the local media tends to dehumanize those with disabilities, using stereotypes like sadcrips (pitiful victims), supercrips (overcomers), murderous villains, circus freaks, and useless burdens.
Using a recent local English television series Kin (2018-2022), to argue for the setup of an independent media watchdog here, researcher Aaron showed that, while Kin had made significant strides — casting the first disabled actor (with Down Syndrome) in 50 years of local TV — more can still be done to portray them more realistically than the above-mentioned caricatures that had been the mainstay for much of TV history here.
Quote:
…negative, systemic representations not only affect the lived experiences of people with disabilities but also shape how society views them, which in turn restricts their access to power, agency, and status.
#3 Towards An Inclusive Society?
Essay Title: What Counts As Inclusion?
Written by Dr Justin Lee, Senior Research Fellow at the Institute of Policy Studies, Lee Kuan Yew School of Public Policy.
Kicking off this final section of the book, Justin’s essay touches on how we need to rethink what we mean when we use the term “inclusion”. On the surface, it might seem to be a noble sentiment that no one would object to (at least not publicly). In reality, the term often gets a pretty superficial interpretation, such as making playgrounds or public transport vehicles more wheelchair-friendly automatically demonstrates inclusion.
The essay challenges us to ask what counts as inclusion, and who gets a say what counts.
What I love was how Justin exposed what’s often the inner motivations for many a surface attempt to show ourselves as people who support and even celebrate those with disabilities. Just so we can say that we’re being inclusive.
For example, complimenting a person in a wheelchair for making their way to work on public transport by saying they are “inspiring”. Or creating campaigns to make the disabled seem “not disabled” because, in truth, we ourselves are uncomfortable with the disability. So, by using euphemisms, we can focus on positivity while ignoring lived realities.
Justin ends by positing that society should see life as less of a race for a win than a puzzle that needs completing. The former leaves those who don’t win out in the cold. The latter finds wholeness when all the pieces come together.
Quote:
Even when we take a sensibly inclusive approach of sequencing and pacing our efforts, we must remember that as long as the puzzle is not complete, there will be marginalized groups who suffer as a result of it. For those who suffer, inclusion cannot occur soon enough.
My Son with ASD — Have I Been Inclusive Towards Him?
I realize as I read this book that I still have barely a clue how best to raise my son well.
That thought alone has filled me with regret, plus a good dose of anxiety and angst. All that leads to sporadic feelings of anger too as I recall the numerous times I’ve lost patience with him. Despite the fact he’s often behaving as his ASD would have him behave.
This is such a terrible admission to make, isn’t it? Especially for a father who’s been blogging regularly about autism these past four years. Who should have both the experience and the wherewithal to know better!
Why do I say so?
The first essay reminded me how often I, like the doctors A.R. consulted, dismissed (even at times mocked) my son’s struggles — drooling, aversion to loud noises, stimming, and self-talk. What he needed in those moments was my presence; my ongoing assurance that I am with him despite his challenges. That I love him in spite of all these attributes he has. Many of them form his identity, and my frequent disregard and even hostile annoyance can be argued as borderline oppression.
I must do better.
The second essay reminds me I should advocate for more realistic media portrayals of those with disability and call out both the good and the bad I see. That’s how I stand in the gap as both a communications educator by profession and a special needs caregiver on behalf of my son. After all, he is still too young to have the verbiage to articulate the times he experiences, directly or otherwise, bullying or discrimination by society.
I must do that for him. And for others like him.
The third essay challenges me to rethink my own understanding of inclusion. Despite living with my son for all his life. Walking closely with him these past five years since his official diagnosis. Even leaving full-time employment to tend to him.
Even with all of that, I still find myself so often misguided and misinformed about what it truly means to be inclusive.
I must better inform myself.
I believe this book will help me. And, hopefully, anyone like me.
