KUANSONG VICTOR ZHUANG (Princeton University), MENG EE WONG (National Institute of Education) and DAN GOODLEY (University of Sheffield) make the case for disability studies in Singapore. This is an abridged version of their editors’ introduction to Not Without Us: Perspectives on Disability and Inclusion in Singapore, a new volume published by Ethos Books.
Not without us. For those familiar with the disability rights movement, the title of our collection references the slogan of the disability rights movement, nothing about us without us, which is a clarion call for disabled peoples’ self-representation. In his 1998 book of the same title, Nothing About Us Without Us, James Charlton attributes the slogan to 1993,1 when he heard disabled leaders in South Africa use the phrase. The ethos of nothing about us without us is also present in the United Nations Convention on the Rights of Persons with Disabilities, and was adopted as the slogan of the International Day of Disabled Persons 2004.
But importantly, not without us also signals the links that Singapore has with the international disability rights movement. In 1981, disabled leaders from around the world—Ed Roberts, Vic Finkelstein, Bengt Lindqvist, among others—came to Singapore and founded Disabled Peoples’ International, the first cross-disability international organisation of disabled people. They elected a Singaporean, Ron Chandran-Dudley as their first chairperson. Derrick Cogburn,2 discussing disability rights in Southeast Asia, also highlights the importance of Singapore and 1981 in contributing to the current international focus on inclusion. 1981 also witnessed the blossoming of a nascent disability rights movement in Singapore.3 Yet despite these linkages to the language of rights, what has emerged today as inclusion in Singapore has markedly different characteristics from what is typically expected of an inclusion based upon the idea of nothing about us without us.
This discussion about what not without us signifies serves as a segue into current discussions around inclusion in Singapore. There has been, since the mid-2000s, a distinct focus on including disabled people in Singapore. As this collection was being put together, the 4th Enabling Masterplan was published. The Enabling Masterplan, which serves as a guide and framework towards how inclusion can happen in Singapore, was first implemented in 2007. Disabled people and organisations are involved in its production and widely consulted in the formulation of the plans, but the kind of disabled leadership that was envisioned in nothing about us without us seems to have been co-opted into a state-led mechanism that involves the whole-of-society within the making of inclusion.
A still from a video promoting the Enabling Masterplan 2030 report.
We do not object to the workings of this apparatus of power, nor is this meant to be criticism of the Enabling Masterplan. Rather, in calling attention to not without us, we hope to invite deeper reflection on the state of play around inclusion, speaking both with and against inclusion in Singapore today. Not without us thus seeks to offer, not just a reminder of what might have been by signifying a past that is now silent, but also a future that may emerge, even within the contemporary era of inclusion. It reminds us that even while inclusion is embraced today, real inclusion is still an ideal yet to be realised, and that was and still is a struggle in Singapore.
Importantly, we situate the production of this volume amidst efforts to grow the space for a Singapore disability studies. In the last 30 years or so, disability studies has seen increased interest and exponential growth in academic institutions in Britain and America. As a discipline, disability studies demands a critical re-thinking and re-examination of the ways in which we research, analyse and think about disability in our lives, with deep roots in activism that challenge societal norms and grounded upon the disabled ontologies and lives that give the discipline its name. In Singapore, small steps have been taken to build a nascent disability studies with the setup of a Facebook group dedicated to critical discussion,4 and also an issue on exploring disability studies published in s-pores,5 an e-journal dedicated to exploring new directions in Singapore studies in 2018. There is also a growing corpus of critical scholarship and research based on disability studies principles in Singapore.6 Others, both Singaporean and foreign academics and researchers, have also contributed to this space with their efforts and visits to Singapore—Reuben Wong, Nagase Osamu, Tamar Heller, and many others.
As academic researchers, we are also cognisant of how academia can be ableist and continue to perpetuate problematic logics that serve to exclude. Importantly, while the volume is produced for the purpose of growing disability studies, and is thus naturally situated and coalesces around research, we are also careful not to perpetuate a sort of academic elitism in the volume. Thus, while the volume comprises academic research papers, policy critiques and analyses utilising both humanities and social sciences research methods, it is also juxtaposed with papers written from personal and lived experiences of disability. Importantly, in offering a diversity of mediums throughout the volume, what we hope to do is to also invite questions on how disability research could and should look like.
We see the volume’s key contribution as shifting the focus from disability as simply the passive subject of study. In his own experiences in academia, Meng Ee, who works at the National Institute of Education, notes how disability research in education tends to see disabled people as simply to be studied. In other academic fields, disability also tends to be seen as an issue that needs to be solved or a condition in need of cure. The cast of disabled scholars and researchers in this volume thus offers a different perspective on how things could be. And when it is non-disabled scholars writing about disability, they do so in a way that respects and actively seeks to amplify disabled peoples’ voices and to critically examine the conditions of inclusion. Not without us, we hope, will shift the weight of things towards centring disability, and return agency to disabled people.
The edited volume, Not Without Us, is published by Ethos Books..
And it is also this theme of not without us that the reader will find embedded in the cover chosen for the book. The image is shot by Isabelle Lim, a freelance photographer who is deaf and was born with Nager syndrome. The photograph features “Wheelsmith” Danial Bawthan and ShiGGa Shay in a dance as they rap in the music video for “Fire in the Rain”, which was directed by acclaimed Singaporean auteur Royston Tan. “Fire in the Rain” was produced as part of “See the True Me”, a five-year public education campaign spearheaded by the National Council of Social Service. Launched in 2016, the campaign represents a concerted effort by state agencies to build greater inclusivity by changing public mindsets about disability. Other disabled performers, such as Adelyn Koh, Joshua Allen German, Sarah Jane, Charlene Wong, dancers from local deaf hip-hop dance group Redeafination and Isabelle Lim, also performed in the video. As the music video’s YouTube caption proclaims, the video (and correspondingly, the campaign) asks that we “look beyond disabilities, [so that] persons with special needs can contribute to society.”7 In the slick music video, the abilities of the disabled performers are clear for all to see.
For us, the editors, the moment captured in this photo—the rap/dance between “Wheelsmith” Danial Bawthan and ShiGGa Shay—signifies the way inclusion is often thought about in Singapore, in moving away from a simplistic affirmation of disability rights, to a more complex interwoven and intricate relationship between disabled and non-disabled people. In dance, there is often a need to read each other’s movements, so as not to bump into one’s partner. Without clear boundaries governing the rights of disabled people, there are times when bumps occur, such as when people or systems discriminate against the disabled. It is at these ruptures that we see the limits of state-led inclusion. Yet, the dance of inclusion resumes after this momentary pause, often in the way that it has been initially choreographed.
The behind-the-scenes shot also signals a need for a more critical examination of the experience of disability behind the façade of inclusion. Here, we sit with disability as an essential element of the human condition. We argue that sitting with disability—as we might sit with the photograph (and its making)—highlights how one’s disability can offer a different kind of orientation to the world. As Isabelle Lim writes in her LinkedIn, her disability “sharpens [her] sense of seeing” while she waits to capture the right moment.8 Danial Bawthan, who also performed at the 2019 National Day Parade, proclaims proudly in And Suddenly I Disappear, the first disabled-led theatre production in Singapore, that “this [disabled] body is dangerous, it desires, it delights, it delivers, it dances”. Disability is who they (or we) are and influences their (or some of our) lived experiences; it is not something that can be simply displaced. The claiming of disability ultimately is a key and central theme of Not Without Us, to recognise disability as a form of positive embodiment, and generative form of identity and knowledge, both internationally and in an inclusion that is proceeding at full steam in Singapore.
Over the last three decades distinct models of disability and communities of disability scholars have grown, in various national contexts, emphasising disability’s minority status (North America), socio-economic foundation (United Kingdom), cultural location (Australia and North America), relational constitution (Nordic countries), bio-psycho-social character (supranational perspectives such as World Health Organisation and United Nations) and colonial imprints (including Africa, Asia and South America).9 These models and perspectives of disability share an ambition: to radically shift the ways in which we understand disability and by extension how we understand the human condition. Historically, disability has been cast as an individual problem, a medicalised pathology and a psychological deficit. And these ideas and discourses still dominate our everyday ways of thinking about disability. In contrast, social, cultural, minority and relational models of disability demand us all to think differently about disability, with disabled people, guided by the voices and aspirations of disabled people. Nothing about us, without us.
Emerging perspectives reject viewing disability as an individual problem, the authors write.
One reason for putting this volume together relates to the need to foreground the Singaporean experience in relation to disability. A focus on Singapore brings with it the need to sit with local historical, cultural, social and economic conditions as well as be mindful of a wider global politics of disability. So, while we can argue that there is an urgent need to address the educational, health, artistic, familial and employment realities of disabled people across the world, how these realities play out in the Singapore context will be contingent on a number of localised factors even as they are situated within a global emergence of disability.
This is especially so because of how the world has woken up to disability over the last two decades. The global desire for knowing disability is perhaps best captured by the 2011 WHO/World Bank World Report on Disability.10 We value this administrative impulse to understand the current situation of disabled people and to respond legislatively in a uniform and consistent manner. And as we have hinted at the start the inclusion of disabled people in Singapore is today a matter of great urgency. From government masterplans, to celebrations of disability, from public education campaigns to public pledges to be inclusive, Singapore has begun to wholeheartedly embrace disabled people as part of the nation. Disabled people have also begun to be more visible in media reports, public life and society. And yet, we feel that there remains much more to be understood about the experience of disability in a Singapore that aspires to be inclusive.
If as a discipline, disability studies demands a critical re-thinking and re- examination of the ways in which we research, analyse and think about disability in our lives, then the present inclusion in Singapore, which does not hinge on the embrace of disability rights legislation, provides an opportunity to turn to disabled experiences. This can illuminate what it means to be included and allow Singapore’s experience of disability to add to theories developed in disability studies.
While we take a critical stance towards inclusion as it is unfolding in Singapore, we do not argue against inclusion as it is unfolding. Rather, when taken as a whole, the collection add to the chorus of diversity that is embedded within notions of inclusion. And that ultimately is the value of a critical Singapore Disability Studies, one which embraces the values of disability research in ways aligned to the principles of the disability rights movement.
So, 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 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. Through a disability studies perspective, it opens up a dialogue, an opportunity for investigation to consider how society treats their disabled persons and fosters a closer conduit between disabled and non-disabled persons. And it is ultimately our vision that even as we continue to pursue inclusion, we will eventually move towards one that truly embraces and centres disability.
- Read the full chapter here. The book is available from Ethos Books as a paperback or e-book.
Endnotes
1. Charlton, J. (1998). Nothing about us without us. (University of California Press)
2. Cogburn, D. L. and Kempin Reuter, T. (2017). Making Disability Rights Real in Southeast Asia. (Lexington Books)
3. Zhuang, K. V. (2020). At the Margins of Society: Disability Rights and Inclusion in 1980s Singapore. Disability and the Global South, 7(1), pp. 1813–1829. https://disabilityglobalsouth.files.wordpress.com/2020/05/07_01_02.pdf
4. Disability Studies in Singapore. Facebook. https://www.facebook.com/groups/DisabilityStudiesInSingapore
5. Zhuang, K. V. (2018). Editorial – Exploring Disability Studies: Reflections on Methodology. S-pores: New Directions in Singapore Studies(18). http://s-pores.com/2018/11/editorial-exploring- disability-studies-reflections-on-methodology/
6. Chua, H. (2022). The Voluntary Sterilisation Act: Best Interests, Caregivers, and Disability Rights. Medical Law Review; Goggin, G. and Zhuang, K. V. (2022). “Disability as Smart Equality: Inclusive Technology in a Digitally Advanced Nation,” in Digital Inclusion: Enhancing Vulnerable People’s Social Inclusion and Welfare? edited by P. Tsatsou. (Palgrave), pp. 257–275; Holden, P. (2020). “Do the Write Thing”: Writing Schizophrenia in Singapore. a/b: Auto/Biography Studies, pp. 1–21; Lee, J., Mathews, M., Wong, F. S., & Zhuang, K. V. (2017). Beyond the Business Case: Different Models of Including People with Disabilities at Work. Disability Studies Quarterly, 37(4). https://doi. org/10.18061/dsq.v37i4.6099; Wong, M. E., Low, J. M. and Appelhans, P. (2017). “Understanding CRPD Implementation in Singapore,” in Making Disability Rights Real in Southeast Asia edited by D. L. Cogburn and T. K. Reuter. (Lexington Books), pp. 143–166; Wong, M. E., Ng, I., Lor, J. and Wong, R. (2017). “Navigating Through the ‘Rules’ of Civil Society: In search of disability rights in Singapore,” in A History of Human Rights Society in Singapore edited by J. Song. (Routledge), pp. 169–186. https://doi.org/10.4324/9781315527413; Zhuang, K. V. (2010). “Enabling the Singapore Story: Writing a History of Disability,” in Monograph 42: Studies in Malaysian & Singapore History: Mubin Sheppard Memorial Essays edited by B. Lockhart and T. S. Lim. (Malaysian Branch of the Royal Asiatic Society), pp. 37–71; Zhuang, K. V. (2016). Inclusion in Singapore: a social model analysis of disability polic., Disability & Society, 31(5), pp. 622–640. https://doi.org/10.1080/09687599.2016.1197821; Zhuang, K. V. (2020). At the Margins of Society: Disability Rights and Inclusion in 1980s Singapore. Disability and the Global South, 7(1), pp. 1813–1829. https://disabilityglobalsouth.files.wordpress. com/2020/05/07_01_02.pdf; Zhuang, K. V. (2021). The Included: Disability-Led Arts within Inclusion in Singapore. Journal of Literary & Cultural Disability Studies, 15(4), pp. 471–487; Zhuang, K. V. (Forthcoming). Disabling Lee Kuan Yew and the Singapore Story: The Logics of Inclusion in Contemporary Singapore. Asian Studies Review; Zhuang, K. V., & Goggin, G. (Forthcoming). “Disability, debilitation, and the digital economy: The case of the superapp Grab in the multicultural nation of Singapore,” in Global Digital Inequality: Studies in Cultural Communication edited by E. Vartanova, A. Gladkova and Shi-xu. (Routledge)
7. National Council of Social Service. (2019, February 22). Look Beyond My Disability, See the True Me – ‘Fire in the Rain’ Music Video [Video]. YouTube. https://www.youtube.com/watch?v=gBhYSW0l9pU&ab_channel=NationalCouncilofSocialService
8. Isabelle Lim. I am Isabelle Lim, just call me Issy [Profile]. LinkedIn. https://www.linkedin.com/in/issyshoots
9. Goodley, D. (2016). Disability studies: An interdisciplinary introduction (2nd ed.). (Sage)
10. WHO/World Bank. (2011). World Report on Disability 2011. World Health Organization, https://www.who.int/teams/noncommunicable-diseases/sensory-functions-disability-and-rehabilitation/world-report-on-disability