OKU card holder
I recall the year I received my autism diagnosis: I was 27 years old.
It was April: Autism Awareness Month.
I was filled with enthusiasm: “Yes,” I thought. “People are listening to our voices. People do care about us.”
Over the past three years, that initial optimism has given way to sober reflection. A persistent thought, based on lived experience, lingers: the systemic and structural barriers remain.
We speak, yet our concerns do not appear in comprehensive policy changes that effectively dismantle entrenched barriers.
It is within this tension that government efforts must be understood.
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On the surface, recent policy developments, appear to signal a shift.
At the closing ceremony of the national-level celebration of the International Day of Persons with Disabilities 2025 on 3 December, the Women, Family and Community Development Minister Nancy Shukri highlighted Malaysia’s transition from a charity-based to a rights-based and empowerment approach to disability.
Among the empowerment efforts she mentioned was reviewing the national action plan for people with Disabilities to align it with the Persons with Disabilities Act 2008 (PwD Act) and the Convention on the Rights of Persons with Disabilities (CRPD).
The government has introduced a range of initiatives in autism-related and other disability matters. These include the establishment of the Autism Service Centre, the publication of the Manja module, the expansion of Permata centres with 11 new facilities across Malaysia, the provision of free tertiary education for disabled people, and the development of the integrated MyOKU database for more responsive interventions.
Such initiatives do not, however, constitute a fundamental dismantling of the structural conditions that continue to shape lived autistic realities in predominantly neurotypical systems and processes.
When measures are introduced primarily in response to individual complaints or selective advocacy, they risk reinforcing a charity and pity-focused model of disability – rather than advancing a rights-based framework grounded in dignity, accessibility and affordability for autistic persons, and accountability on the part of service providers and duty bearers.
Structural barriers remain largely intact when policy decisions are reactive and focus on their public relations optics value.
In my lifetime, will I see comprehensive disability rights legislation, policy and implementation plans that target the eradication of systemic barriers within a CRPD-aligned framework – one that considers intersectional parameters such as gender equality and Malaysia’s rapid ageing population?
The long-overdue amendment to the PwD Act was expected to be tabled in the first parliamentary session of 2026, according to deputy minister Lim Hui Ying – an assurance that reflected a commitment already stated in 2023.
Repeated announcements without enforceable timelines or structural mechanisms risk deteriorating into a cycle of indefinitely deferred reform.
In practice, this perpetuates exposure to discrimination, often requiring public escalation before corrective action is taken.
In contrast, some enterprises in Malaysia have demonstrated that disability inclusion can be implemented with greater speed and operational clarity when supported by accountability, clear targets, and institutional will.
Two government-linked companies, Petronas and Maybank, have implemented structured inclusion initiatives with measurable outcomes. Several prominent private firms have also embarked on disability inclusion initiatives.
What holds the government back?
These examples raise a critical question: if inclusion is operationally feasible in Malaysia, what continues to constrain systemic progress in coordinated, all-of-government action?
The issue is no longer poor awareness or policy language. The Communication and Multimedia Content Forum has issued commendable disability-inclusive language guidelines.
Why then do we still face complacency, siloed working, delayed implementation, fragmentation, and non-enforcement within existing legal, policy and planning frameworks?
Without urgent, CRPD-compliant amendments to the PwD Act, reinforced by definitions of discrimination and enforceable mechanisms that hold to account measurable, system-wide, all-of-government implementation, commitments remain as rhetoric, without transformative impact.
For people with disabilities, delay is not neutral but perpetuates exclusion.
The government must urgently amend Articles 8(2) and 12(1) of the Federal Constitution to explicitly include “disability” as a prohibited ground of discrimination, thereby ensuring constitutional protection for disabled people.
With the next general election expected in the near future, will the current administration act on its commitments to align the upholding of the rights of disabled people with the CRPD before its tenure concludes?
The author has lived experience, as an OKU (disabled person) card holder, of workplace discrimination.
The views expressed in Aliran's media statements and the NGO statements we have endorsed reflect Aliran's official stand. Views and opinions expressed in other pieces published here do not necessarily reflect Aliran's official position.
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