COMMENT: Open-sourcing PwD Act 2008 amendments: A call for Madani transparency

AS Malaysia enters a pivotal year for institutional reform, the Madani Government has signalled a commitment to transparency through the proposed Freedom of Information (FOI) Bill.

In July 2025, Prime Minister Datuk Seri Anwar Ibrahim made a landmark promise: to introduce a Freedom of Information (FOI) Act that would “overturn the long-standing ‘secrecy by default’ culture.”

He said it would strengthen transparency and give the public real access to government decisions. He framed this as a vital step in building public trust and accountability, and encouraging informed participation in our democracy.

However, for the 16 per cent of our population with disabilities—and the 30-40 per cent of Malaysians who act as their care partners—this promise is not a reality and we are locked out of the reform process. This is because the current legislative process in Malaysia for the amendments to the Persons with Disabilities (PwD) Act 2008 are shrouded under the Official Secrets Act (OSA). While the government speaks of transparency, the very legislation intended to empower our most vulnerable citizens is being drafted behind closed doors.

While we wait for the FOI Bill to be enacted, we appeal to the Prime Minister to launch the process of ‘Madani Transparency’ and a new chapter of public participation in our democracy with the current amendments to the PwD Act 2008. The PwD Act 2008 is of critical importance to the disability community. The 2008 Act is completely powerless, not enforceable and deficient in many aspects.

The current drafting and revision process of the PwD Act 2008 is ‘heavy’ on the involvement of civil servants, but weak on that of persons with lived experience of disability, and with limited engagement of the disability community at large: 30-40 per cent of the Malaysian population.

Workshops and town hall sessions to hear opinions from the disability community, civil society disability organisations and the public have been limited. Most meetings were held face-to-face in numbers and a process not conducive to meaningful discussion. That made it very difficult for feedback and very expensive for those living some distance away to travel, skewing feedback to those invitees with the means to physically attend. A lifetime of struggle is often reduced to a few minutes of feedback.

We are concerned that the amendments might be largely lacking in 21st-century compliance with the Convention on the Rights of Persons with Disabilities that Malaysia ratified on July 19, 2010. That would be the case if the amended Act views persons with disabilities as passive recipients of aid rather than active citizens with legal rights on an equal basis with others.

We currently lag far behind all our regional neighbours in the quality and scope of disability rights and legislations. Perhaps we could better understand the issue by looking at how India developed their Rights of Persons with Disabilities (RPwD) Act 2016.

The RPwD Act was a decade-long journey that transitioned India’s legal framework from a charitable/medical model to a rights-based model. It is often cited as a prime example of ‘bottom-up’ lawmaking in India, with the extensive engagement of the disability community and civil society. Key initiatives that the government of India and its Ministry of Social Justice and Empowerment took included:

• Posting the Bill on the Ministry’s website to invite comments from the general public.
• Regional and grassroots consultations across the country where PwDs and their families could provide direct feedback on the provisions of the draft Bill.
• Extensive involvement of many civil society disability organisations across India in contributing substantive inputs and supporting the process of obtaining wide nationwide feedback to aid the drafting with enriched contents that reflected lived realities.

A similar experience occurred in Taiwan’s drafting of its People with Disabilities Rights Protection Act (2007). There was a very high level of consultation, collaboration and presence of PwDs and disability organisations. Much of the drafting was not done behind closed doors in government offices but through research commissioned to experts and civil society disability organisations. It was also ensured that PwD representatives were present in the legislative chambers and at public hearings.

We appeal to the Prime Minister and, through him, the Madani Government to remove the OSA restriction on the PwD Act 2008, place the current amended Act online for full public access, and institute an open review mechanism to develop a meaningful, revised Act. This would be in the interest of the nation as a whole and bring us on par with our Asian neighbours.

There is absolutely no need to conceal the amendments to the PwD Act 2008 under the OSA as there is no national security risk in discussing the rights of disabled persons. Unless the goal is to hide weak amendments with no meaningful definition of discrimination, no redress mechanism for injustice experienced by persons with disabilities, and which excludes civil servants from accountability.

If the Madani Government is truly serious about institutional reform, it must trust the people. By opening the amendments of the PwD Act 2008 to the public for collaborative development, Malaysia can set a precedent for inclusive law-making. It allows for the integration of critical lived-experience perspectives that civil servants may overlook.

Open-sourcing the PwD Act 2008 ensures that the principle of ‘Nothing about Us, without Us’ is a functional reality—not just a slogan.

We are now at a crossroads. We can either continue with a paternalistic approach where civil servants decide what is best for ‘the disabled’, or we can move toward a rights-based model that treats PwDs as citizens on an equal basis as others. We do not need more closed-door meetings; we need the light of public participation.

* Datuk Dr Amar-Singh HSS is a consultant paediatrician, child-disability activist, and member of The OKU Rights Matter Project.