Each year we celebrate a number of disability days, often with the involvement of the Ministry of Women, Family and Community Development (KPWKM), Ministry of Health (MOH) and, at times, the Ministry of Education (MOE). Recently, we observed World Autism Awareness Day (2 April). In March, we celebrated World Down Syndrome Day (21 March). There are also International Day of Persons with Disabilities (3 December), World Cerebral Palsy Day (6 October), Invisible Disabilities Week (17–23 October) and many others. These events will usually have statements made by the relevant ministers, invariably illustrated by photo-ops of the ministers with persons with disabilities and some infographics or images on the respective social media pages of KPWKM, MOH and MOE.

These days and events are critical to focusing the nation’s attention on the lived experiences of persons with diverse disabilities. And, they should continue.

At the same time, we need to ask: what impact have they made on the rights and support services landscape of the disability community? Have they galvanised KPWKM, MOH, MOE and other government agencies to enlarge and improve the national services for persons with disabilities and the disability community?

For voters and taxpayers, independent and regular audits of the performance of ministries and all government entities are long overdue. Malaysian voters and taxpayers have a right to access the results of independent assessments of the scope and effectiveness of government services, performance and annual/longer-term plans for persons with disabilities. With their care partners, persons with disabilities account for more than 30% of the population. With the rapid ageing of Malaysian society and the ageing-disability intersectionality, we must acknowledge that the 30% will further rise. Yet, the disability community is one of the most poorly served in the nation.

Here are critical questions that KPWKM, MOH and MOE need to answer on plans that each has outlined for the disability community:

1.    What has happened to the “National Autism Council” whose formation the Ministry of Health announced in July 2022? Does it take two years for its inception? Services for autistic persons are limited, with most services provided outside of government agencies. Autistic persons, and other persons with disabilities, face barriers throughout their life course, from inadequate access to timely diagnosis and support services to the absence of systematic, long-term efforts to reduce stigmatization and discrimination, especially for OKU card holders, thus discouraging many from being formally registered as OKU.

2.    Could Suruhanjaya Perkhidmatan Awam (SPA) and the Chief Secretary to the Government explain why we have failed, after 35 years (since 1988), to meet a government policy target and promise of 1% civil service jobs for disabled persons? The current rate is 0.3%. Most telling is that the majority of persons with disabilities who attempt to apply for a job via SPA do not even get called for an interview. Discriminatory practices against OKU who have the necessary qualifications extend beyond recruitment to job security and career advancement for the very few OKU in the civil service. Why are such practices silently condoned and perpetuated? Why is there no leadership in ending the injustice of discrimination against qualified OKU in the civil service?

3.    The Ministry of Women, Family and Community Development has a good “Pelan Tindakan OKU 2016-2022.” Could KPWKM inform the Malaysian people what it has achieved for the 10 Plan strategies, as well as many objectives and targets? After 2022, why is there no follow-up Pelan Tindakan OKU? Without a Pelan Tindakan OKU since 1 January 2023, how does KPWKM allocate resources for OKU?

4.    The Minister, KPWKM, announced that amendments to the Persons with Disabilities Act, 2008 would be tabled in Parliament in June 2023. Nine months later, we are still waiting for meaningful amendments to harmonise the Act with the Convention on the Rights of Persons with Disabilities (CRPD) that Malaysia ratified in 2010. Noteworthy is the 10th core strategy (under KPWKM’s Pelan Tindakan OKU 2016-2022) to “Implement laws in accordance with the Convention on the Rights of Persons with Disabilities.” Could KPWKM explain what it has done to include and reflect the CRPD in amendments to the Act?

5.    The Family Health Development Division, Ministry of Health, has a detailed “Health Care for Persons with Disabilities Plan of Action 2011-2020.” It would be good to know what has been achieved. In the case of MOH too, why has the Plan for the disability community stopped without a follow-up Plan and, in this case even earlier, at 2020? Is it customary that a plan or its follow-up takes years to be launched?

6.    In the case of the development of the National Dementia Plan of Action whose custodian is MOH, the process commenced in 2019, with civil society inputs in 2022 for the revival of the draft Plan and again in March 2024, with no indication to the concerned public when it will be launched.

7.    The Ministry of Education has a meaningful “Malaysian Education Blueprint 2013-2025” (MEB) which outlines that “75% of students with special needs should be enrolled in inclusive programmes by 2025.” MOE recently announced that the MEB “achieved success.” And yet, those of us who work with children with disabilities know how limited inclusion into mainstream education still is. It is time to take stock of the real achievements on inclusive education by listening to the ground realities of the disability community.

8.    Why are the reports of the work undertaken by the National Council for Persons with Disabilities (MBOKU) and its subcommittees not made available on the KPWKM website for easy access by OKU and the entire disability community that includes parents, allies and all concerned with OKU rights?

Celebrating disability days is good for awareness raising, their original purpose, but only if reinforced by comprehensive efforts that yield meaningful change in the lives of persons with disabilities at the household and community levels. Nice speeches, plans and ideas are of no value unless translated into reality on the ground. The disability community is languishing. Children with disabilities are not fulfilling their potential. Adults with disabilities are struggling for equitable inclusion in all aspects of mainstream society. Malaysia is ill-prepared for disability with rapid ageing. This is a system-wide failure that calls for an urgent reality check and corrective actions. The answers to the above questions are a telling measure of the state of societal wellbeing.

Dato’ Dr Amar-Singh HSS
San Yuenwah
Anit Kaur Randhawa
Ng Lai-Thin
The OKU Rights Matter Project
https://okurightsmatter.com/