In Malaysia, the issues surrounding disability and the well-being of individuals with disabilities, often referred to as Orang Kurang Upaya (OKU), or Persons With Disabilities (PwDs), have been subjects of concern and advocacy.
While there have been efforts to address these issues, there remains much work to be done in promoting inclusivity, awareness, and support for the community.
Plagued with social stigma due to their differences, find out ten things that you should know about the community, from the various facets of disability to the changemakers taking one step at a time.
#1: Not All Disabilities Can Be Seen
The Persons with Disabilities Act (PwD) of 2008 defines persons with disabilities as “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society.”
The Social Welfare Department or Jabatan Kebajikan Malaysia (JKM) classified disabilities into 7 distinct categories:
- Hearing disability refers to the inability to hear clearly in both ears without the use of a hearing aid or unable to hear at all, even with the use of a hearing aid. This is further divided into four levels:
|Minimum||15 – < 30 dB (Children)|
20 – < 30 dB (Adults)
|Medium||30 – < 60 dB|
|Severe||60 – < 90 dB|
|Profound||> 90 dB|
- Visual disability encompasses a range of conditions, including complete blindness in both eyes, partial blindness in one or both eyes, limited vision in both eyes or any other form of permanent visual impairment. These visual disabilities can be further categorised into:
|Low vision||Having vision that is worse than 6/18 but equal to or better than 3/60, even when using visual aids or having a visual field of less than 20 degrees from fixation.|
|Blind||Having vision less than 3/60 or a visual field of less than 10 degrees from fixation|
- Speech disability is referred to as the inability to speak, impairing communication and cannot be understood in interaction. The condition is permanent or incurable. The assessment of this condition for children should be done at five years of age or older.
- Physical disability refers to a permanent incapacity of specific body parts, whether it’s due to loss, absence, or the inability of these body parts to function effectively in essential activities. These include self-care, mobility, and the ability to change one’s body position.
This condition may be caused by various factors, including injuries (trauma) or diseases affecting the nervous, cardiovascular, respiratory, haematology, immunology, urology, hepatobiliary, musculoskeletal, gynaecological, and other bodily systems, leading to dysfunctions.
- Learning disability refers to deviation from what is expected based on an individual’s biological age. This category encompasses conditions such as Late Global Development, Down Syndrome, and intellectual disabilities.
Additionally, this category comprises conditions that impact an individual’s learning capacity, including Autism (Autistic Spectrum Disorder), Attention Deficit Hyperactivity Disorder (ADHD), and specific learning challenges like dyslexia, dyscalculia, and dysgraphia.
- Mental disabilities refers to severe mental health conditions that lead to an individual’s incapacity to function either partially or entirely in matters related to themselves or their interactions within the community. This includes their ability to carry out everyday tasks and engage with others in society.
Chronic mental illnesses include Organic Mental Disorders, Schizophrenia, Paranoia, Mood Disorders such as depression and bipolar disorder, Psychotic Disorders, and Schizoaffective Disorders such as Persistent Delusional Disorders.
- Multiple disabilities refer to individuals who experience multiple types of disabilities that do not fit neatly into the previously mentioned 6 categories due to their diverse and unique combination of impairments.
#2: The Demographic Landscape: Statistics on Disabilities
- As of December 2018, there were 497,390 registered PwDs in Malaysia, with around 64% male and 36% female. However, the actual PwD population is estimated to be much higher, possibly reaching up to 4.5 million, with many individuals not officially registered in 2020.
- Registering as a person with a disability is voluntary and, by doing so, allows the individual to benefit in education, vocational training, financial aid and employment opportunities. Individuals would have to obtain a form from JKM, and verification of disability from a medical professional for submission.
- However, the associated social stigma and lack of awareness are some of the significant obstacles.
#3: The Protection Of PwDs In Legislation
In 2008, a significant milestone was achieved with the approval of the ‘Persons with Disabilities (PwD) Act’. This legislation affirms equal access to public facilities, healthcare services, and recreational activities for people with disabilities.
- The PwD Act includes provisions beyond education, addressing issues of accessibility in public spaces, employment opportunities, and social services. One notable provision within the PwD Act is Section 28, which explicitly states that disabled students should not face exclusion from the education system solely based on their disability.
- The act also established the National Council for Persons with Disabilities, responsible for making legislative recommendations and promoting disability employment.
- Malaysia ratified the 2006 United Nations Convention on the Rights of Persons with Disabilities, emphasising non-discrimination, equality of opportunity, and the participation of PwDs in cultural and recreational activities. Malaysia’s interpretation of these principles aligns with its Federal Constitution, ensuring equal treatment and respect for the inherent dignity of individuals with disabilities.
- Despite these provisions, several challenges emerged, casting doubts on the actual impact of the Act on the lives of PwDs.
#4: Not-An-All-Access Pass
Infrastructure remains inaccessible to persons with disabilities (PwD) despite legal provisions under the Person with Disabilities Act (Act 685).
- Regulations like the Uniform Building By-Laws require barrier-free access but face inconsistent compliance from building owners due to design limitations and budget constraints. The lack of stringent enforcement exacerbates this issue.
Accessibility challenges extend to higher education institutions, where disabled students often encounter barriers to enrollment due to inadequate facilities.
- PwDs still find themselves rejected from high education institutions (IPT) simply because there is a lack of facilities to accommodate disabled students. Karishma, who achieved an impressive score of 9As, faced rejection from her desired university program due to the lack of facilities to accommodate disabled students in higher education institutions (IPTs).
There are 20 public universities, 36 polytechnics and four public skills training institutions (in Malaysia), yet Karishma was only given the opportunity to apply for two diploma programmes and to community colleges because of her physical disability. – Thanasegar Ramasamy, representative of the Concerned UM Indian Graduates (CUMIG), on behalf of Karishma
- For the deaf community, qualified sign language interpreters are scarce at only 95, leaving at least 40,000 without essential communication support.
When we need to communicate with hearing people, they will need to hire BIM interpreters, just like how our government communicates with foreigners using interpreters, and we would still be able to practise our linguistic identity. – Dr Anthony Alexander Chong Vee Yee, deaf activist, and secretary of MyBIM
Government websites, including the Election Commission (EC) and the Election Commission (SPR), lack user-friendliness for those with visual or hearing impairments. The absence of sign language interpreters during political campaigns hinders engagement for the deaf community. Furthermore, the absence of Braille on ballot papers contributes to challenges faced by visually impaired voters.
The SPR website where everyone goes to find out their polling station and saluran (lane) is not very accessible to the PwD community. It is not in the format that is suited for the visually impaired. – Datin Anit Kaur Randhawa, member of OKU Rights Matter and co-chair of Harapan OKU Law Reform Group
#5: Challenging Climate For Special Education
Since 1988, special needs education has been a priority in Malaysia, with the government committing to improving the framework for special needs education in the Malaysian Education Blueprint 2013-2025. Special education facilities have been established, including a learning disabilities facility in 2014, in addition to the existing special education schools nationwide.
However, a striking disconnect exists between the plan on paper and the implementation of programmes in schools.
- For example, the deaf community primarily communicates through Malaysian Sign Language (MSL), also known as Bahasa Isyarat Malaysia (BIM). BIM/MSL, derived from American Sign Language (ASL), is officially recognised by the Malaysian government, However, it is not the language taught to deaf students in schools. Instead, the government and Ministry of Education advocate the use of Kod Tangan Bahasa Malaysia (KTBM) as the communicative method within educational institutions.
- Access to Braille materials remains a substantial challenge for visually impaired Malaysian students, impeding their ability to receive a quality education
Some of my blind friends do not even have access to Braille books until late in the semester. This makes it difficult for them to get a quality education. – Hani Nursayahira Muhamat Halis, 15-year-old student 
- There is a concerning lack of information and awareness surrounding early childhood intervention strategies for autistic and Down Syndrome children, particularly in smaller districts. The Ministry of Education’s Special Education Integrated Programme (SEIP) aims to address these issues but faces hurdles in reaching all affected children.
#6: One Step Forward, Two Steps Backward In Employment
Section 29 of the Malaysian Laws, as outlined in the Person with Disabilities Act 2008, emphasises that PwDs should have equal access to employment opportunities compared to those without disabilities.
Employers are also obligated to protect the rights of PwDs, ensuring equal treatment, fair working conditions, and protection from harassment. However, these provisions are often not fully realised in practice.
- The employment situation for PwDs has been challenging. Out of a total workforce of 13.74 million in the private sector from 1990 to 2018, only a minuscule 14,252 were PwDs.
- In the public sector, according to 2019 statistics from the Public Service Department, only 3,686 PwDs were employed, making up just 0.29% of the total workforce in the country.
PwDs are less adaptable compared to the rest of us. If you force them to do something that they do not like or do not understand, obviously it will fail. To have this happen repeatedly is heartbreaking for a parent, especially when we see their confidence shattered. – Adli Yahya, founder of Autism Cafe Project
- Despite government mandates requiring organisations to reserve 1% of their workforce for PwDs, compliance with this quota remains questionable.
- Reasons cited for this include the lack of disabled-friendly infrastructure, the absence of well-defined policies, and complicated legislation, which deters employers from hiring PwDs.
#7: The Weight Of Stigma
PwDs often experience various forms of stigma, including attitudinal, economic, structural, and social isolation.
- A specific form of discrimination faced by the deaf community is known as audism, which encompasses a set of beliefs and attitudes directed against individuals who are deaf or hard of hearing. It is when the community expects deaf individuals to assimilate more closely with the hearing community in appearance, communication methods, and language use rather than using sign language as a legitimate mode of communication.
- In government-run educational facilities, there’s a need for children with Down Syndrome to develop and enhance their existing skills and recognise their ability to engage in social interactions despite their intellectual challenges.
- In rural areas, parents of autistic children face disheartenment due to a lack of understanding from extended family members. Mistreatment and harsh words stem from a lack of knowledge and the attached stigma. The broader society also has progress to make in terms of tolerance for autistic children, as evidenced by a family forced to leave their rented house in Kuala Terengganu in 2018 due to their child’s condition.
- The situation for PwDs extends into the workplace, where prejudice and discrimination hinder career progression. Employers may undermine PwDs due to their impairments, and many PwDs feel unsuited for certain jobs after reviewing job requirements. Companies often prefer to hire non-disabled graduates, believing that PwDs may not significantly contribute to their organisations.
- In the workplace, disparities in pay and workload among PwDs and their colleagues are common, leading to feelings of pressure and insecurity among PwDs about their capabilities.
#8: A Need For More Supportive Crutches
- Families with autistic children registered as Orang Kurang Upaya (OKU) in Malaysia receive a monthly allowance of RM150, however, the amount is considered inadequate to meet their needs. Some families miss out on this assistance due to a lack of awareness about available aids, while others choose not to label their children as disabled.
- The National Human Rights Commission of Malaysia (Suhakam) reports that a majority of people with disabilities lack a stable income. A disability organisation mentioned that individuals with disabilities receive only RM400 per month if they are employed or RM300 monthly if they are bedridden.
- In 2022, the plights of para-athletes were brought to the forefront despite the assistance of Yayasan Kebajikan Atlet Kebangsaan (YAKEB) or National Athlete Welfare Foundation, the national champions were left to fend for themselves in their post-glory days.
#9: Differences? More Like Superpowers
PwD individuals have also defied challenges and achieved remarkable success across various fields, including arts, sports, education, and more. Their stories serve as powerful testaments to their boundless potential, regardless of their physical or cognitive abilities.
- In the arts and culture sphere, artists such as Lim Anuar, and Maryam have made impressionable pieces.
- In 2023, students with visual impairment proving their disabilities aren’t a barrier to success. Dr Anthony Chong made history as the first deaf doctorate recipient in University Malaya.
#10: Organisations Making A Difference
Advocacy groups and NGOs play pivotal roles in supporting the Persons with Disabilities (PwD) community across various aspects of their lives. These organisations are dedicated to promoting inclusivity, advancing disability rights, and addressing the unique challenges faced by PwDs.
In the education sector, these are some of the changemakers ensuring that individuals, especially children, are provided with the best possible opportunities for inclusive and equitable learning experiences:
- Persatuan Down Sindrom Malaysia (PDSM)
- Kiwanis Down Syndrome Foundation (KDSF)
- Sarawak Society for Parents of Children with Special Needs (PIBAKAT)
- Association for the Welfare of Intellectually Disabled Children (Perkata)
- Malaysian CARE
- IDEAS Autism Centre
- Malaysian Association for the Blind (MAB)
For parents and caregivers of Persons with Disabilities (PwD) individuals, many harbour a dream of a more independent and meaningful life for their children or loved ones. To fulfil these aspirations, various centres and social enterprises have risen up to meet the needs of PwDs and provide opportunities for enhanced independence and fulfilment.
- Autism Cafe Project
- RC Deaf Missions Cafe
- Seven Tea One
- I’mPossible Cafe
- Bake With Dignity
- Persatuan Daybreak
Advocacy groups have also been instrumental in supporting the rights and dignity of PwDs. They combat negative attitudes, push for better access in public places, and promote inclusive policies. The following are a non-extensive list of changemakers lobbying for a better world for the PwDs.
- Malaysia Information Network for the Disabled (MIND)
- National Autistic Society of Malaysia (NASOM)
- National Council for the Blind, Malaysia (NCBM)
- Malaysian Federation of the Deaf
- Malaysian Sign Language and Deaf Studies Association (MyBIM)
- Dialogue Includes All (previously known as Dialogue in the Dark)
- Persatuan OKU Sentral
Explore our sources:
- MyGovernment. (n.d.). Getting General Information on PwD. Link
- Jabatan Kebajikan Masyarakat. (2018). LAPORAN TAHUNAN MAJLIS KEBANGSAAN BAGI ORANG KURANG UPAYA (MKBOKU) TAHUN 2018. Link.
- Y.M.Chui. (2021). Digital Training: Helping PwDs to RISE. The Edge. Link
- Human Resources Developmental Fund (2019). Human Capital Report. Link
- Disability IN. (n.d.). Malaysia. Link
- Kamarudin,H. et al. (2014). Malaysian Scenario on Access and Facilities for Persons with Disabilities: A literature review. MATEC Web of Conferences. Link.
- R.Nagotra. (2021). Student with 9As denied admission at varsity due to disability, group claims. Link
- F.Awaluddin. (2021). Signing the deaf and mute away from the margins. Malaysia Now. Link
- A.Gopinanth. (2021). Deaf activist Dr Anthony Alexander Chong outlines plans for literary workshop that highlights Bahasa Isyarat Malaysia. Options The Edge. Link
- BFM. (2022). GE15: We Need To Do More To Empower Persons With Disabilities. Link
- S.Mohamed. (2019). Blind students not getting the books they need. The Malaysian Reserve. Link.
- Ibrahim, N; Rahman, P; Dahlan, A (2021). Parent’s Experience on Employment Issues Faced by Young Adult With Autism Spectrum Disorder (ASD). Malaysian Journal of Medicine and Health Sciences. Link
- E. Khursyiah Basir. (2020). Lack Of Facilities Hamper Job Accessibility For OKU.Link