Has celebrating disability days really benefited the community?

From Amar-Singh HSS, Yuenwah San, Anit Kaur Randhawa and Lai-Thin Ng

Every year, we celebrate a number of disability days, often with the involvement of the women, family and community development ministry, the health ministry and at times the education ministry.

Recently, we observed World Autism Awareness Day on April 2. On March 21, we celebrated World Down Syndrome Day. There is also World Cerebral Palsy Day (Oct 6), Invisible Disabilities Week (Oct 17-23), International Day of Persons with Disabilities (Dec 3) and many others.

These events usually have statements made by the relevant ministers, invariably illustrated with photo ops of the ministers with persons with disabilities, and infographics or images on the respective social media pages of the ministries.

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 disabled community? Have they galvanised the three ministries and other government agencies to enlarge and improve national services for the disability community?

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 intersection of age and disability, we must acknowledge that the figure of 30% will rise further. Yet, the disability community is one of the most poorly served in the nation.

Here are critical questions that the three ministries need to answer on the plans that they have outlined for the disability community:

1. What happened to the “National Autism Council” whose formation the health ministry announced in July 2022?

Does its inception need two years? Services for autistic people are limited, with most services provided outside of government agencies.

Autistic people and other persons with disabilities face barriers throughout the course of their lives: from inadequate access to timely diagnosis and support services, to the absence of systematic and long-term efforts to reduce stigmatisation and discrimination, especially for card-carrying persons with disabilities, discouraging many from being formally registered as such.

2. Could the Public Services Commission (SPA) and 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% of civil service jobs for disabled people?

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 interviews. Discriminatory practices against persons with disabilities with the necessary qualifications extend beyond recruitment to job security and career advancement for the very few persons with disabilities 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 persons with disabilities in the civil service?

3. The women, family and community development ministry had a good persons with disabilities action plan for 2016-2022.

Could the ministry inform Malaysians what it has achieved in its 10 plan strategies, as well as its many objectives and targets? After 2022, why has there been no follow-up action plan? Without a persons with disabilities action plan since Jan 1, 2023, how has the ministry allocated resources for persons with disabilities?

4. The women, family and community development minister 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 the ministry’s persons with disabilities action plan for 2016-2022) to “implement laws in accordance with the CRPD”. Could the ministry explain what it has done to include and reflect the CRPD in amendments to the act?

5. The health ministry’s family health development division 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 ministry’s case, too, why has the plan for the disability community stopped without a follow-up plan, 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 action plan, whose custodian is the health ministry, the process commenced in 2019 with civil society input for the revival of the draft plan in 2022 and again in March 2024, with no indication to the concerned public when it will be launched.

7. The education ministry 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”.

The ministry 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 and its subcommittees not made available on the women, family and community development ministry’s website for easy access by persons with disabilities and the entire disability community, which includes parents, allies and all concerned about persons with disabilities rights?

Celebrating disability days is good to raise awareness – 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 well-being. - FMT

 

Dr Amar-Singh HSS is a consultant paediatrician and adviser to the National Early Childhood Intervention Council and National Family Support Group for Children and People with Special Needs, Malaysia.

Yuenwah San is the co-founder of The OKU Rights Matter Project.

Anit Randhawa is a member of the executive committee of the Medico-Legal Society of Malaysia, and a member of the Association of Women Lawyers Malaysia.

Lai-Thin Ng is an educator in special and inclusive education, and project officer for the National Early Childhood Intervention Council Malaysia.

The views expressed are those of the writers and do not necessarily reflect those of MMKtT.