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Recording: 

Passcode: =Q0hfYB7 

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The impact of disability studies on scholarship and advocacy. Speakers Kerri Heng, Shalom Lim, Max Soh, Meng Ee Wong 

A key ambition of Disability Matters is to make disability the driving subject of research. One element of our programme promotes scholarship that demonstrates the contribution of disability studies to a host of fields and disciplines. Over the next six years we are running a number of short and accessible online symposia that address a general question:

How is health research, theory and scholarship transformed by an engagement with critical disability studies?

INTRODUCTION BY DAN

Welcome to the sixth Online Symposium of Disability Matters: A major six year pan-national programme of disability, health and science research, funded by a Wellcome Trust Discretionary Award. I’m Dan Goodley - the Principle Investigator - and I work in the iHuman research institute at the University of 91̽��. I’m a white, early 50s, cisgendered bald man wearing fabulous clothes, many of them sewn by my own fair hands. My preferred pronouns are he/him. I am a member of the TAB community. A key ambition of Disability Matters is to make disability the driving subject of research. One element of our programme promotes scholarship that demonstrates the contribution of disability studies to a host of fields and disciplines. Over the next five years we are going to run a number of short and accessible online symposia. This is our sixth one and we are delighted with our presenters and thank them for their participation. Our symposia, this year, are addressing a general question:
 

How is health research, theory and scholarship transformed by an engagement with critical disability studies?

The format of the symposium will be:

● Three presentations (10 minutes x 3) - Dan will introduce each before their presentation and presenters will give an audio-description and preferred pronouns

● Q&A and Discussion - 30 minutes

For access we are committed to sticking to time.
 

Housekeeping and access

● Those attending today will have been sent a link to the website in which the papers are published, so you can follow as our speakers present. You’ll also find this link in the chat.

● Having cameras on is completely optional.

● If you wish to access English live captioning, you can turn this on by clicking the Live Transcription option in the meeting toolbar below.

● The symposium will be recorded and made available on the Disability Matters website. 

● There will be an opportunity for the audience to ask questions - these will be followed up at the end during the Q&A / Discussion portion. 

● Please direct questions to the Q&A box in the toolbar below. These will then be read out loud later on.

● If you feel you need to leave the call at any point for any reason you are free to do so.

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Paper 1 : Kerri Heng, Nanyang Technological University
Travelling from Goffman to the social model of disability and social constructionist approach to disability: My journey as a budding researcher with disabilities.

Biography: Kerri Heng is passionate about qualitative research in disability and mental health. A recent graduate of the Master of Arts in Sociology programme at Nanyang Technological University, her Master's thesis examined disabilities, identities, and employment experiences in Singapore. For her undergraduate honours thesis, she studied the social barriers faced by university students with hearing loss in Singapore. In the near future, Kerri hopes to pursue a PhD in Public Health, Sociology, or Medical Anthropology. 

I was born with hearing loss in both ears and visual impairment in my left eye, but I was politically and socially uninformed. I didn't see myself as a person with disabilities due to my upbringing and socialisation among, for the most part, persons without disabilities. I went to mainstream schools and my first job out of secondary school was in a mainstream work environment. To use social model terminology, perhaps I was impaired but not disabled. I was ignorant of the ability privileges I had; the ability to speak, enough hearing to carry out conversations smoothly at close range, enough sight to read text in print and digital formats, and overall physical abilities.

In 2016, I was a Sociology undergraduate taking a course titled Deviance and Society.

My professor, Prof Kamaludeen Mohamed Nasir from Nanyang Technological University, introduced the class to Erving Goffman's seminal 1963 book, Stigma: Notes on the Management of Spoiled Identity. That class also expounded the medical, charity, and social models of disability. All of a sudden, like lighting, it struck me that I fully qualified as a person with disabilities! My impairments clearly fit the medical definitions of disability, and I experienced some stigma and discrimination while growing up. For example, the loss of friendships in secondary school because I couldn't hear my classmates so well, and the loss of grades for a test in polytechnic, because I did not hear one additional question that was verbally spoken and not printed on the test paper. Goffman's work on stigma made complete sense to me and that marked the start of my identification as a person with disabilities, and the start of my disability research journey.

Coincidentally, the same Deviance and Society professor taught my qualitative research class, also in 2016. We were asked to brainstorm project ideas for our honours thesis, and borrowing from Pierre Bourdieu, I decided to make the banal exotic. When brainstorming, I realised three things: 1) My struggles with hearing loss were socio-relational, 2) Most people, that is, able-bodied people, wouldn't know about these struggles, and 3) I couldn't have been the only student with hearing loss in university. There must be others like me!

Adopting the social model of disability (which was all I knew at that time), I decided to work on an honours thesis titled: Understanding the social barriers faced by university students with hearing loss in Singapore. I conducted in-depth interviews with fellow undergraduates with hearing loss, university disability support staff, and one lecturer who had a student with hearing loss. I identified university settings that posed challenges for students with hearing loss, such as hearing in lecture halls and hearing enough to participate effectively in class discussions. 

Upon graduation in 2017, I secured a job as a research assistant at Singapore's Centre for Ageing, Research, and Education. There, I learnt more about disabilities, albeit from a more medical and gerontological perspective. I was surprised to find that one of my older adult research participants had very little hearing, which I completely empathised with. She was literate in Mandarin Chinese and she spoke in Cantonese. I conducted an in-depth interview with her by writing out my interview questions in Chinese characters and with her verbalising her answers in spoken Cantonese, which I audio recorded and translated. That was my most memorable research experience with older adults.

In 2019, I worked part-time at Trampolene, an organisation which supports youths with autism in social communication and employment. Also in 2019, I volunteered together with a team of researchers at Singapore’s Disabled People’s Association to compile a parallel report for the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). These experiences solidified my interest in pursuing disability research at higher degree levels. 

In 2020, I embarked on a Master's degree in Sociology, where I researched identities, disabilities, and employment experiences in Singapore. I shall not reveal too much about this work, as I’m planning to publish it in journal articles. All I can say is that I adopted a moderate social constructionist framework in exploring the labelling of persons with disabilities and the work-related consequences of such labelling. Invoking the famous Thomas Theorem, labels are social constructs, but they are real in their consequences.

I have graduated and am now working part-time in a new research consultancy, Anthro Insights. My boss, Issac Lim, who has a PhD in Education from Oxford, got me to read Tom Shakespeare's 2014 book, Disability Rights and Wrongs Revisited. I am now learning even more about disability studies then I have ever been. Particularly, the critical realist approach to disability strikes me as profound and I'm excited to learn more about it.

These days, I spend my free time planning for a PhD. Would I take a critical realist approach to disability for my PhD, or would I draw from various approaches? Would I pursue a PhD in Sociology, Medical Anthropology, or Public Health? The road ahead is unknown, but I am excited to continue my disability research journey.

 

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Paper 2: Shalom Lim, Independent researcher
From Stigma to Strength: How Disability Studies Shaped My Journey.
 

Biography: Shalom Lim is a 28-year-old disability advocate, artist, and author who serves as a committee member on the board of management at the Disabled People's Association in Singapore. He identifies both as a mobility-impaired person and neurodivergent individual due to his double diagnosis of muscular dystrophy in childhood and inattentive ADHD in adulthood. A critical criminology graduate from the University of Liverpool in Singapore, he currently aspires to be a playwright and researcher specialising in disability issues and holds a deep passion for critical disability studies from his experiences of systematic ableism in mainstream society.

Disability studies offered me a second chance at life. The multidisciplinary field emerged during the 1990s and challenges ableist normative assumptions about the social construction of disability and the diverse experiences of disabled people in mainstream societies worldwide (Goodley, 2014). As a mobility-impaired and neurodivergent Duchenne muscular dystrophy (DMD) survivor, disability studies taught me to embrace my multi-disabled identity, instilling pride in my lived experiences.

Born in 1995, I will turn 30 next year, an age that most DMD specialists consider a medical miracle (Bushby et al., 2010). DMD, the most common and severe type of muscular dystrophy, involves the progressive decline of muscles, eventually leading to heart and respiratory failure (Hoffman, Brown & Kunkel, 1987). I began using a wheelchair at six. Currently, I rely on full-time breathing support. In 2022, I was diagnosed with inattentive attention-deficit/hyperactivity disorder (ADHD), and in 2020, I was diagnosed with two mental health conditions, identifying as having psychosocial disabilities.

I first encountered disability studies in 2019 while researching after a two-year experience with religious trauma that nearly derailed my progressive growth. I will elaborate more on this in the next section. My older brother Isaac’s death from DMD two months later fueled my passion for disability studies. This paper documents my journey into disability studies and its profound impact on my life.

My journey began in September 2015, when I started my undergraduate studies in criminology at the University of Liverpool in Singapore. Although criminology differs from disability studies, the shared experiences and stigma faced by disabled people and former offenders drew me to study it. 

Both social minorities encounter barriers to education and employment and suffer societal and institutional discrimination and prejudice. The intersectionality of these experiences made me realise the broader implications of societal views and treatment of minority groups in general.

I do not suggest that disabled persons are criminal offenders or vice versa. However, learning about the social creation of crime and societal divisions of class, race, and gender paved the way for my interest in exploring disability as a sociological construct and the concept of disability justice, shifting my understanding of my disabilities from viewing them as biological pathologies to subscribing to the social and human rights models of disability, moving away from the charity model of disability. 

Two years later, I encountered ableist theology from a faith healer under the guise of ‘spiritual mentorship,’ claiming my DMD was due to a generational curse. Despite my discomfort, I followed her methods, feeling emotionally burdened when they failed. The toxic relationship took a mental toll, plunging me into a psychological downward spiral as I struggled to reconcile my disabilities with harmful religious teachings (Friedli, 2009). This period was particularly challenging as it compounded my existing struggles with my health and societal discrimination, leading to mental health issues.

Isaac’s death soon after intensified my struggles, making me question the faith healer’s claims and fearing my brother’s fate might soon be mine. However, his passing became the catalyst for my involvement in disability studies. An ill-fated attempt to use my religious trauma as qualitative data for my autoethnographic undergraduate dissertation worsened my mental state. 

Nevertheless, hope emerged when I connected with a local disability studies community, forming lasting friendships and finding the support I needed. It provided a safe space to explore my identity, share my experiences, and receive validation and support from others who understood my struggles.

In criminology, the ‘wounded healer’ describes an ex-offender who reintegrates into society and helps others through their recovery (Maruna, 2001). Similarly, I committed a ‘crime’ in Durkheimian terms by rejecting the social normalisation of disability as inherently destructive (Durkheim, 1982). 

Disability studies helped me regain my footing, allowing me to thrive in advocacy work with the Disabled People’s Association and K9Assistance in Singapore and writing for Muscular Dystrophy News Today. My work is geared towards promoting accessibility, raising awareness about the challenges faced by disabled individuals, such as assistance dog users and persons living with DMD, and lobbying for policy changes to improve the lives of disabled people in Singapore and beyond.

Ultimately, I aspire to become a certified counsellor for disabled individuals who have survived trauma and a playwright to share our stories. Disability studies remind me of my promise to Isaac, my late brother, to speak up for those who cannot speak for themselves. This promise has driven my commitment to advocacy and my desire to make a meaningful impact in the lives of disabled people.

Through my engagement with disability studies, I have come to understand the importance of intersectionality and how various forms of oppression intersect to impact disabled individuals differently. This understanding has deepened my commitment to advocating for a more inclusive and equitable society for all disadvantaged groups. My experiences highlight the need for greater disability representation in all areas of society, including academia, the arts, and public policy.

In conclusion, disability studies have played a transformative role in my life, providing me with the tools to understand and embrace my identity, challenge societal norms, and advocate for change. It has empowered me to turn my experiences of trauma and marginalisation into sources of strength and resilience. As I continue my journey, I remain committed to using my voice and my work to create a more inclusive and just world for disabled individuals and other marginalised communities.

Bibliography 

Bushby, K. et al. (2010). ‘Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management.’ Lancet Neurology, 9(1), pp.77–93.

Durkheim, E. (1982). The Rules of Sociological Method. New York: Free Press.

Friedli, L. (2009). Mental health, resilience and inequalities. Copenhagen: World Health Organization.

Goodley, D. (2014). Dis/ability Studies: Theorising Disablism and Ableism. London: Routledge.

Hoffman, E.P., Brown, R.H. Jr. & Kunkel, L.M. (1987). ‘Dystrophin: the protein product of the Duchenne muscular dystrophy locus.’ Cell, 51(6), pp.919-928.

Maruna, S. (2001). Making Good: How Ex-Convicts Reform and Rebuild Their Lives. Washington, DC: American Psychological Association.

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Paper 3: Max Soh, Disabled People’s Association, Singapore
An Opportune Time for the Expansion of Disability Studies in Singapore

Biography: Max Soh is the Research and Policy Manager at the Disabled People's Association (DPA) Singapore. He joined DPA in 2021 and oversees the organisations various research and policy initiatives - such as conducting original research for the organisation, authoring articles and reports on relevant policy developments facing the disability community in Singapore, and organising educational initiatives through webinars and media outreach and collaborations. In addition to being disabled himself (visually impaired since birth), Max brings experience with disability and disability advocacy through his prior involvements with disability organisations especially internationally.  

Other than lived experience of disability as a blind/visually impaired person, most of my experience in the disability space has been in the activism sphere – whether amongst grassroots initiatives or within NGO networks and advocacy groups. Most recently in 2021, I joined the Disabled People’s Association (DPA) Singapore – the first and (till this date) the only cross-disability organisation in Singapore focused on disability advocacy - where I currently serve as the organisation’s Research and Policy Manager. While I have been privileged to attend higher education, my experience with disability in particular, other than lived experience, is thus predominantly outside of academia and thus the following might be void of intricate analyses of theoretical frameworks that is common in academic spaces. However, from my various advocacy experiences, I shall attempt to explain in the following why now is a potentially opportune time in Singapore to expand the academic discipline of disability studies in the island nation.

Singapore has come a long way in terms of the state of inclusion of disabled people within its borders. National roadmaps outlining the government’s plans to promote disability inclusion through the Enabling Masterplans, vast improvements to the accessibilities of public transport, and fairly generous government subsidies to promote employment of disabled people are all entities that did not exist when I was growing up in the 1990s.

However, despite such advances, there are gaps that remain. The employment rate of persons with disabilities still stands at less than half that of the general public, with persons with disabilities facing economic inequalities such as being twice as over-represented in the lower-income brackets, and with disabled Singaporeans experiencing discrimination at a significantly higher rate – with a 2022 study showing the percentage of disabled Singaporeans experiencing workplace discrimination standing at 28 percentage points higher than that of the general public.^[i] 

Yet fundamentally, the approach towards disability in Singapore, while having made improvements, is still often not where it needs to be. In particular, while Singapore has made significant distance from a pure medical model approach, improvements are needed to realise a social model, let alone any sort of rights model outlined in the U.N. Convention on the Rights of Persons with Disabilities (UNCRPD) in Singapore.^[ii] Much of the approach towards disability in Singapore still focuses on what can be done for disabled people rather than discussions on implementing structures to foster allyship and empowerment of disabled people. Allow me to provide two examples.

For example, due to Singapore’s rapidly aging population, there have been significant efforts to promote digital inclusion. For instance, there have been efforts to enhance the Assistive Technology Fund (ATF) which provides subsidies to persons with disabilities with a monthly PCHI of less than S$2,000.^[iii] However, for many disabled people, especially those with sensory disabilities, digital inclusion requires regulation for web designers and companies to ensure their digital platforms are accessible. Yet, there is no such regulation or law in Singapore for such private and non-governmental entities to make their digital platforms and subsequently their services accessible - as a result, many are not, with persons with disabilities having little to no recourse should we encounter such prevalent inaccessibilities by the private sector.^[iv]

Another example is with what is known as SkillsFuture – a government-led initiative to foster a practice of life-long learning in Singaporeans. SkillsFuture is an online portal where Singaporeans can sign up for a myriad of vocational education courses to pick up various skills to enhance their vocational prospects. The SkillsFuture system was launched in 2015, and in uncertain economic times of the last several years, the government has focused particularly on enhancing the SkillsFuture system – with almost every major speech from top government leadership in the last several years either noting or elaborating extensively on the SkillsFuture system.^[v] SkillsFuture is an important initiative with great potential. However, from our conversations with disabled people, SkillsFuture remains significantly inaccessible to persons with disabilities – with no requirement for training providers to provide reasonable accommodations to learners with disabilities – resulting in persons with disabilities reporting not receiving reasonable accommodations and thus not being able to take SkillsFuture courses.^[vi]

To address this, the government has launched the Enabling Academy – a separate learning hub where courses are specially curated for disabled people. While the intent was to create accessibility, and while the Enabling Academy is important in the short-term, there is concern that the Enabling Academy may lead to unintentional segregation and may not be sustainable in the long-term to create equal opportunities for disabled people. For example, the Enabling Academy is only available to persons with disabilities, and while the government’s efforts to create 700 accessible courses at the Enabling Academy in a relatively short time span of a few years should be lauded, this is a small fraction of the over 20,000 courses offered through the wider SkillsFuture system.^[vii]

Such examples show that while there is intention to address societal factors such as accessibility, what results may not necessarily be empowering nor inclusive to persons with disabilities, and that the focus on what can be done for disabled people vs. what can be done to empower disabled people will result in vastly different outcomes.

However, there are several recent significant developments in Singapore current events that show potential to change things for the better, and where the discipline of disability studies can play an important role.

For example, Singapore is soon to enact its very first workplace anti-discrimination legislation – known as the Workplace Fairness Legislation (WFL). This is a significant development in Singapore’s journey towards a more inclusive society as there currently exist no anti-discrimination legislation of any kind pertaining to any sector in Singapore. DPA has advocated and published extensively on the WFL since plans for the WFL were announced in 2021.^[viii]

The efficacy of the upcoming WFL is still uncertain. For example, pertaining to reasonable accommodations, the committee overseeing the development of the law has only committed to issuing an advisory on reasonable accommodations.^[ix] This is far from ideal, but in light of the fact that the government has long throughout Singapore history resisted even the thought of an anti-discrimination legislation, and in light of the fact that the provision of reasonable accommodations at one point would not even be addressed, this is a step in the right direction with the government planning to use the advisory to educate employers on the importance of reasonable accommodations.^[x]

Moreover, the government is set to enact guidelines later this year for private insurance companies to implement fair practices – following reports from the neurodiverse community and people with psychosocial disabilities of unfair and discriminatory practices.^[xi] The guidelines while the first of its kind, are also far from ideal as they are not law nor is it likely if there will be an independent body comprising of interdisciplinary experts (including people with lived experience) to weigh in on the adjudication of claims, (as DPA and other advocates have called for). However, engagement with disability organisations including people with lived experience to spread awareness about the guidelines is on the government’s agenda with the upcoming guidelines.^[xii]

Such important developments, along with a political transition in government leadership this year to the so-called “fourth generation” (4G) leadership in Singapore Parliament – a team that have stated their desire to witness more inclusive definitions in measuring success, may not necessarily translate into better inclusion; however, what such significant developments in Singapore current events present, are important opportunities for advocates to make our case for proper inclusion.  

In Singapore, due to various laws, the arena for advocacy is limited and qualitatively different compared to that of other countries, and thus developments such as these are tools that advocates have to work with. Yet, the expressed understanding from the government for the need for better education around relevant topics to the disability community such as reasonable accommodations and aiming to concretise fair practices, and the government’s signal expressed desire to witness more inclusion in the new generation of political leadership, presents the need for the expansion of more spaces where Singaporeans, both disabled and non-disabled, can learn to better articulate disability realities and the realities that surround disabled lives to promote both the inclusion and empowerment of disabled people in the island nation. This is why now is a potentially opportune time to develop more spaces for disability studies in Singapore.

Endnotes:

^[i] The employment rate of persons with disabilities currently stands at 32.7% compared to the 66.2%: Ministry of Manpower (MOM), 7 February 2024, "Statistical Table: Employment Outcomes of Persons with Disabilities," MOM.gov.sg. Accessed May 2024. https://stats.mom.gov.sg/Pages/Employment-Outcomes-of-Persons-With-Disabilities-TimeSeries.aspx; Ministry of Manpower (MOM), 31 January 2024, "Labour Force in Singapore 2023," MOM.gov.sg. Accessed May 2024. https://stats.mom.gov.sg/Pages/Labour-Force-In-Singapore-2023.aspx; According to the latest national census, where disability-related data was included for the first time, persons with disabilities comprise 6.93% of the total resident employed population aged 15 years and older, while comprising 12.03% of those who earn below S$2,000/month: Department of Statistics, 2021, “Singapore Census of Population 2020, Statistical Release 2: Households, Geographic Distribution, Transport and Difficulty in Basic Activities,” Singstat.gov.sg. Accessed May 2024. https://www.singstat.gov.sg/publications/reference/cop2020/cop2020-sr2/census20_stat_release2; Association of Women for Action and Research (AWARE), 20 September 2022, “1 in 2 experienced workplace discrimination in Singapore over the past five years,” AWARE. https://www.aware.org.sg/2022/09/1-in-2-experienced-workplace-discrimination-aware-milieu-survey/

^[ii] United Nations Committee on the Rights of Persons with Disabilities, 9 September 2022, "Concluding observations on the initial report of Singapore," United Nations. https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRPD%2fC%2fSGP%2fCO%2f1&Lang=en

^[iii] SupportGoWhere, Assistive Technology Fund," Accessed May 2024. https://supportgowhere.life.gov.sg/schemes/ATF/assistive-technology-fund

^[iv] Disabled People’s Association (DPA) Singapore, 25 January 2024, “Ensuring Digital Inclusion for Persons with Disabilities in Singapore,” DPA.sg, https://dpa.org.sg/ensuring-digital-inclusion-for-persons-with-disabilities-in-singapore/

^[v] Examples include (but are not limited to) Budget Statements 2023 and 2024, President Halimah Yacob’s address to the opening of the second session of the 14th Parliament in 2023, and NDR 2023.

^[vi] Disabled People’s Association (DPA) Singapore, 18 May 2023, “Ensuring Disability Inclusion in Skillsfuture Ecosystem is a Must as Singapore Looks to Refresh Its Social Compact,” DPA.sg, https://dpa.org.sg/ensuring-disability-inclusion-in-skillsfuture-ecosystem-is-a-must-as-singapore-looks-to-refresh-its-social-compact/

^[vii] Disabled People’s Association (DPA) Singapore, 21 February 2024, “DPA Statement on Budget 2024,” DPA.sg, https://dpa.org.sg/dpa-statement-on-budget-2024/  

^[viii] Disabled People’s Association (DPA) Singapore, 19 April 2024, “Achieving Fairness in Employment for Persons with Disabilities in Singapore,” DPA.sg, https://dpa.org.sg/achieving-fairness-in-employment-for-persons-with-disabilities-in-singapore/ 

^[ix] Ibid, pp. 10-22.

^[x] Ibid, p.34

^[xi] Li Yang Lee, 8 November 2023, “Guidelines for insurance fair practice to be rolled out by middle of 2024,” The Straits Times, https://www.straitstimes.com/singapore/guidelines-for-insurance-fair-practice-to-be-rolled-out-by-middle-of-2024; Wesley Loh, 5 November 2022, “Forum: Insurers and employers are not being disability-inclusive,” The Straits Times, https://www.straitstimes.com/opinion/forum/forum-insurers-and-employers-are-not-being-disability-inclusive

^[xii] Hansard – Parliament of Singapore, 28 February 2024, “Committee of Supply – Head U (Prime Minister’s Office),” Hansard, https://sprs.parl.gov.sg/search/#/sprs3topic?reportid=budget-2344