By Jonathan Chan

Not Without Us: Perspectives on Disability and Inclusion in Singapore
Edited by Kuansong Victor Zhuang, Meng Ee Wong and Dan Goodley
Ethos Books (2023) / 404 pages / SGD 27  

In the introduction to Not Without Us: Perspectives on Disability and Inclusion in Singapore, the scholars Kuansong Victor Zhuang, Meng Ee Wong, and Dan Goodley write:

[…] at the risk of being overly prescriptive, we hope that this collection serves as an inspiration for anyone who would pick up and read this book. The use of "inspiration" is deliberate, because for far too long has disability been used as inspiration in the wrong ways. We want to inspire the reader to not only consider how we can all contribute to building a better society, but also to inspire us to consider the wealth of knowledge that can emerge when disability is used in such generative ways. This is especially pertinent in a meritocratic Singapore where success and achievement are emphasised and celebrated, wittingly or unwittingly to the subtle detriment of disabled people. Disability Studies then is an outlet to cultivate empathy, to offer a voice where disabled persons are otherwise located in the margins of society.

This sets out the project of Not Without Us in clear terms, particularly its desire to contribute to and shape the field of critical Singapore Disability Studies, that is, in terms of locating and situating critical Disability Studies within the context of Singapore. The book is a welcome intervention as it draws not just from an array of Disability Studies frameworks from across the world, but in relation to prevailing discourses and structures of race, capitalism and meritocracy within Singapore. The various models that the editors cite include disability's minority status in North America, disability's socio-economic foundation within the United Kingdom, disability's relational constitution within Nordic countries, disability's bio-psycho-social character in international organisations, and disability's colonial imprints across Asia, Africa and South America. To foreground an experience of disability in Singapore, the editors sought to centre the experiences of the disabled themselves, with the book's list of contributors either having direct or indirect experiences with disability – whether they are neurodivergent, deafblind or suffering chronic pain, or through caregiving or social work. This perhaps eschews the definition of disability as being entirely socially constructed, made evident through the relational and individual presentations of experiences of disability throughout the book.

Rather, the collection not only aspires to provide analyses and descriptions of the inclusion of people with disabilities in Singapore at present, stressing the ethos of nothing about us without us at the core of civic life in relation to those with disabilities, but also to re-situate Singapore's significant historic position in relation to the development of disability rights globally. As the editors describe, Disabled Peoples' International, the first cross-disability international organisation of disabled people, was founded in Singapore in 1981. The gathering included disability leaders from across the world, with the Singaporean Ron Chandran-Dudley serving as their first chairperson. The invocation of this history allows the editors to press both for the continuing importance of developing a critical Disability Studies for Singapore, but also Singapore's contribution to global discourse on disability rights. The collection arrives at a time when the prolonged isolation due to Covid-19 measures has given a larger population a short glimpse into the lives of the disabled – as lockdowns have caused immobility, strained face-to-face communications, and renewed a daily ethic of care.

Not Without Us eschews a focus on scholarly or third-party interlocution by having many of its reflective pieces being written by people with disabilities themselves. Curated from submissions through an open call, this editorial decision reflects a desire to centre their perspectives and accord to each contributor a kind of agency in representing their experiences. These essays provide detailed descriptions of the litany of challenges the writers have faced. These include undergraduate Xie Yihui's 'You Are Not Hard-Of-Hearing Enough: Performing Normativities', on being hard-of-hearing across educational institutions; civil servant Tan Siew Ling's 'Going Through Life via Touch: A Journal of My Deafblindness Experience', on devising creative arrangements to perform her work effectively as an administrator at SG Enable; artist Cavan Chang's contribution in 'A Place at the Table: Who Gets to Speak in Singapore' and theatre practitioner Grace Lee-Khoo's 'Performing Dementia: Challenging the Boundaries of Disability and Art' on forms of artmaking; and game journalist Sherry "Elisa" Toh's 'Virtual Progress: A Disabled Journalist's Thoughts on the Video Games Industry'. First-hand, or lived, experiences give a sense of the continuing deficiencies and challenges in existing systems and institutions, ranging from barriers to effective participation in different workplaces, the understaffing of disability centres in universities, to the dismissiveness of psychiatrists towards instances of genuine mental illness.

These personal essays vary in their approaches, with some being straightforward reflections and articulations of daily life in the workplace or in schools, while others make a more concerted effort to connect instances of disabled marginality to larger structural forces. The most potent notion that Not Without Us addresses, which recurs across the collection, is the notion of ablenationalism. It is a paradigm under which the able-bodied individual is best positioned to contribute to the development of the nation-state because of a capacity for productive work. The collection's pieces emphasise the value of work to many of its disabled subjects, particularly the ways it ascribes dignity, purpose and financial independence. However, many other contributors express scepticism or opposition to the notion that inclusion in the workforce is a necessary precondition for civic or national inclusion. In fact, this is the basis of Jocelyn Tay's opposition to the very notion of 'meritocracy' in the essay '"The game was rigged from the start": Singapore's Neoliberal Meritocracy and the Neurodivergent Experience'. Tay argues:

By basing human worth on 'merit' formed from neurotypical standards, the ability of neurodivergent people to climb the socioeconomic ladder is based on their access to resources and support systems to 'pass' as neurotypical. This not only entrenches those with lower socioeconomic class in a state of 'double disability', of both class and cognitive mode, but also obscures institutional discrimination against neurodivergence as simply a lack of individual effort. As such, Singaporean meritocracy justifies institutional ableism by providing the ideological cover of a 'fair playing field'.

The ability of many disabled to "pass" as not having any conditions makes this challenge particularly acute. The ascribing of dignity should not rest solely on an individual's capacity for labour, which is the insidious corollary of a system built on ablenationalism. What happens if a disabled person is unable to get on the trampoline, the famous metaphor provided by then Deputy Prime Minister Tharman Shanmugaratnam in response to a question of the relative absence of safety nets in Singapore, let alone jump on it? Tay's suggestion is to provide neurodivergent people the "means and ability to speak against these institutional oppressions", to introduce "more disabled and neurodivergent voices into the mainstream" to induce changes in societal perspectives. It is only by directing attention of the majority of Singaporean society towards these challenges that society can "pressure and critique the institutions and thus incite change".

The other notion that Not Without Us addresses, as mentioned earlier, is the notion of disability as a form of inspiration. To present disabled individuals as 'inspiring' is to present or platform them as exemplars of resilience or grit even in the midst of the most mundane of tasks. Such notions are laced with a kind of pity that sits uneasily beside a kind of condescension. Attention to individual effort and resilience obscures the ways in which educational systems and physical infrastructure continue to be inadequate to the needs of disabled individuals. Take Yeo Kia Yee's ethnographic essay 'Disability, Ability and Norms of Work: An Ethnographic Study of Work Inclusion at Dignity Kitchen' as an example. In the essay, Yeo immerses herself in the day-to-day operations of Dignity Kitchen, describing its operations and effects on its employees. Despite the culinary training accorded to disabled subjects in Dignity Kitchen, they find themselves, many of whom use wheelchairs, contending with having to access their hawker stall on the third floor while a lift is broken down. The placement of our attention on individual accomplishment can cause other more pertinent daily challenges to be obscured. Herein, ethnographic work is vital in illustrating continuing challenges with disability that many face with greater intricacy. While engaging with the inspiration narratives that many disabled are co-opted into, I couldn't help but wonder if there was a missed opportunity to feature the perspectives of Singapore's Paralympic athletes, given the ways in which their sporting achievements are so readily paraded as symbols of national pride.

Despite the collection's attempts at comprehensiveness, drawing together personal, professional and academic perspectives on the state of disability inclusion in Singapore, across a substantial 400 pages, there were certain areas that were either absent or given minimal attention. One area I pondered was the intersection between disability rights and industries with physically demanding and dangerous work. More specifically, I thought of the variety of risky industries that migrant workers are engaged in, ranging from construction to landscaping to ports. In such instances, workers are far more likely to face a variety of occupational hazards with the possibility of permanent injury or disfiguration. The 2023 worksite collapse of Tanjong Pagar, where 20-year-old Vinoth Kumar was killed, has been a reminder of this. I was also reminded of cases of workers suffering amputated fingers or limbs, gangrene infections from stepping on rusty nails, and nerve damage from falling objects, worsened by employers deliberately underproviding medical care. A concerted critique of neoliberal capitalism would demand an examination of the working conditions of Singapore's lowest income workers, especially given that many face a higher risk of injury or death. An able-bodied worker could very quickly become disabled. This is not to say that there is a pernicious effort to cause harm to workers, but that the likelihood of maiming at a systemic level, leading to workers becoming disabled, is a topic that the book does not touch on. Perhaps this brings into question the element of Singapore in Singapore Disability Studies – whether its attention should lie primarily with Singaporean citizens and permanent residents, or embrace a more capacious engagement with all of Singapore's inhabitants.

Among Singaporeans, however, I thought of the exposure to dangerous conditions experienced by delivery riders and National Service conscripts. The former are often vulnerable to a higher incidence of street accidents. The commercial imperatives of maximising deliveries, undertaken through the gamification of labour, would provide ripe opportunity for commentary on how these intersect with insurance and work practices in relation to disability. The same can be said for National Service, not only from the vantage point of full-time National Servicemen (NSFs) who face the possibility of becoming disabled in the event of exercises going awry, but also the exclusion of disabled males from a quintessentially Singaporean institution. I recall a conscript in my platoon who was neurodivergent, but his father had opted for it not to be declared out of fear that he would be excluded from working opportunities and public housing. Centring the experiences of the disabled in relation to these sectors and institutions would perhaps demand a retrospective view of the conditions leading to forms of physical impairment.

The other missing portions, it seems to me, fall along the lines of age. While there is ample attention given to primary and secondary school education, especially the descriptions of Pathlight emerging as a more 'prestigious' alternative to schools for those with special needs, as well as tertiary education, I was left wondering about early childhood education for those identified to have forms of intellectual disability early on. One imagines that the dearth of preschool teachers in Singapore translates to an even smaller pool of preschool teachers specially trained and qualified to teach young children with special needs. Conversely, it also felt that the book lacks discussion of the relationship between disability and aging, though this is addressed in part by Grace Lee-Khoo's essay on creating theatre with her father, who suffers from dementia. The imminent demographic shifts in Singapore, leading to a larger proportion of aged in communities across the country, also mean that the possibilities of physical or intellectual impairment will become more commonplace. Perhaps this is a reflection of the experiences of the book's contributors, but geriatric care seems to be another area that could be pertinent for exploration in another book.

It would be remiss not to address Cat Chong's poetic essay '—I'm writing my way out—and this is a place of refuge—: A Poetics of Illness and Disability', given that it is the most conspicuously and self-avowedly literary of all of the book's contributions. The piece alternates between fragments of Chong's poetry presented alongside prose segments that recall their challenges living as a graduate student in Nanyang Technological University (NTU), particularly under Covid restrictions. The piece illustrates some of Chong's difficulties with receiving official recognition of their disability, a chronic pain condition without a formal diagnosis. This prevents them from receiving the medication they need from NTU's healthcare services. This then leads to a prolonged period of rationing portions due to their inability to restock in the UK under Covid-19 restrictions. The piece's opening poem is titled '200. —entre chat et loup / between cat & wolf—', which reads:

—because I am a crip of the covid century—language is not enough–––––––
—to facilitate survival—we need PPE—we need medication—we need–––––
—social distancing—we need safety & a language that does not relegate–––
—the sick & the old as disposable—on day 177—the 11th of May 2020—­–––
—Broc says—for the second time—Poetry is where language goes to—–––­–
—renew itself—we enter & deform that turbulent field when——————
—we write it. —to lack total energy is to let flying ants become turbulence———

Chong's use of the word "crip" is intended as a form of provocation, an abbreviation of "cripple" that appeared in the 1970s during the emergence of the disability civil rights movement. She cites Nancy Mairs, who writes that she uses the word "crip" because she wants people to "wince", to see her as a "tough customer, one to whom the fates/gods/viruses have not been kind" but "can face the brutal truth of her experience squarely". Chong's embrace of "crip" as an identifier accords the possibility of a temporality, to "imagine a futurity in which I'm able to thrive". Chong later quotes Alison Kafer, who asks the question of what it means to articulate "crip time", a method of "reorienting an understanding of disability's temporal effect", the explosion of time, in other words, that is exacerbated under Covid-19.

Chong's poems provide a more impressionistic rendering of their experience, connected by long dashes, laid across the page. This helps to create a sense of the elongation of time and linearity on the page. Chong's essay leans towards being expository, as is consistent with many of the other pieces in the book, especially as they aspire towards an accurate representation of struggling with disability. The essay touches not only on Chong's condition and experiences, but also provides a grounding for their poetics. In '188. —tender confusion—', they write:

—of the unending presence—the body—the distance of pause between———
—here & futurity—I know—I'm in pain—I know it'll go on like the ————
—rain—the sudden is hard falling I long to go stand in—maybe I've————
—always been sentimental—every crip text is a hermetic text of multiple——
—fusions—sometimes begetting illders to me—elders living in——————
—survival of chronic conditions—in my dreams the women I love are———
—trying to kill me—in each attempt to find a hiding place—pain contains—
—an element of blankets

Chong's poems reveal the ways that language can serve as obfuscation or provocation, especially in their reclamation of the term "crip" as an identity marker given that their disability is hidden. Chong's writing provides a counterpoint to many of the book's pieces that aspire towards description, rather than aestheticisation. Chong further addresses the multiple metaphors of sex, techno-surveillance and zoomorphic robots in pandemic-era Singapore, and survival. Chong's essay, weaving personal writing, theory and poetry, sits alongside the book's pieces by A. R., Nurul Fadiah Johari and Jocelyn Tay. One hopes that future editions of or successors to Not Without Us might have other, more conspicuously creative contributions to complement the more straightforwardly descriptive or theoretical work in the book. I think of the work of the hard-of-hearing poet Ilya Kaminsky and the DeafBlind poet John Lee Clark.

The other essay that raises questions pertinent to those with an interest in literature and languages is Timothy Y. Loh's essay 'The Right Way to Sign: Sign Language, Inclusion and the Deaf Community in Singapore' on sign language. Herein, we see a parallel to linguistic debates surrounding the persistence of Singlish in contradistinction to Singaporean English within Singapore's deaf community. Sign language of different origins was taught to different generations in Singapore: sign language originating in Shanghai (Shanghainese Sign Language), the United States (American Sign Language and Signing Exact English) and in Singapore (Singapore Sign Language). These language differences often fall along generational lines, with Shanghainese Sign Language taught between the 1950s and 1980s, Signing Exact English being adopted from 1976 onwards, and Singapore Sign Language being coined in 2008. The implications of this are fascinating, especially given the relationship between the physical expression of sign language and written expressions of English or Chinese, as well as the notion that a Singaporean Sign Language is an 'improper' form of formal sign language from elsewhere. Perhaps unsurprisingly, my first thought is related to how this shapes and informs Singapore's Deaf poetry scene, especially in how poetic articulations retain linguistic uniqueness while remaining comprehensible, or not, to audiences outside of Singapore.

The panoply of voices of Not Without Us leads, perhaps, to one of the book's seeming difficulties by way of representation, inclusion and accessibility. On one hand, the book's featuring of various highly-educated authors raises the question of who is best equipped to describe or articulate some of these experiences of disability. In seeking to provide provocations and assessments of the state of disability inclusion in Singapore, the co-mingling of personal accounts and scholarly articles could have yielded a preference for prose styles that reveal some form of university-level training. This becomes a larger question of representation – who gets to speak for those who might otherwise not be featured in such a tome? This is perhaps a structural question – would one book purely on personal reflections and another focused on scholarly articles have allowed for a wider range of perspectives to be better represented? How could the editors have worked with individual authors to improve on their contributions? On the other hand, the very genre of the book, prioritising the written word, brings with it questions of its accessibility to readers with disabilities. Perhaps these have already been complemented by videos, recordings or other forms by which the book's substance can be mediated and transmitted to readers with disabilities who might struggle with it in its current form.

Of course, this is a question primarily of who the book's primary audience is. Is it for policymakers? For scholars? For lay readers? For those with disabilities? For those who love and support those with disabilities? A wide range of subjects also means a wide possible range of audiences. Ethos generally seeks to cast a wide net with its releases, though with an inclination towards a larger or popular audience. Not Without Us straddles this, perhaps uneasily, as a compendium attempting to draw together the threads necessary for a critical Singapore Disability Studies to thrive, as the book's editors strive to do. In this respect, it resembles the editorial decisions behind Brown Is Redacted – valuable as an introductory resource but remaining destined to be seen as incomplete by virtue of the impossibility of adequately representing all the voices it aspires to include.

The inclusion of an epigraph by MP and Chair of the Autism Resource Centre (Singapore) and Autism Association (Singapore), Denise Phua, was particularly noteworthy. In her blurb, she writes:  

Not Without Us provides one cluster of perspectives of individuals wanting to see the disabled amongst us better included and embraced. It is valuable insight to further clarify the larger picture of what Singapore aspires to and can become.

Such an endorsement is notable, given Jocelyn Tay's critique of Phua's reference to neurodivergent employees as a "non-traditional workforce". Tay asserts that this "continues the framing that neurodivergence is only valuable inasmuch as it has utility in capitalistic society". The taking up of disability rights by the PAP is perhaps seen as uncontroversial and necessary, evidenced by the consistent development and implementation of their policy framework as detailed in the Enabling Masterplan, though the book's suggestions and experiences range from a progressivism through systemic reform to opposition to the underpinning basis of the Singapore system altogether.

In these regards, Not Without Us tends, and rightfully so, towards provocation in its aims of cultivating empathy, providing generative pathways for knowledge to emerge through experiences of disability, and ensuring Singaporean perspectives are emphasised. It is an important contribution to a larger endeavour – the fight for the inclusion of those who are disabled in everyday life in Singapore, and the continuing need to embrace the fullness of every person.           

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