From Stigma to Strength: How Disability Studies Shaped My Journey.

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.

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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.

References

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.