The authors in this chapter highlights the reality of cerebral palsy in Malaysia. The chapter is a blend experiential account and factual details. The experiential fragment includes a personal case study, providing 32 years’ worth of experience and first-hand details on the life of a cerebral palsy individual in Malaysia. The factual fragment provides researched information on the general reality of cerebral palsy in Malaysia, which includes regulations, existing services and support systems, ergonomics, awareness, and inclusion. This chapter also includes an interview with a fellow CP individual. The chapter ends with an interesting take-home message that aims to encourage and motivate those negatively affected.
CEREBRAL PALSY IN MALAYSIA: AN OVERVIEW
The following is an overview of Cerebral Palsy in Malaysia.
Malaysia signed the Convention on the Rights of Persons with Disabilities (CRPD) on the 8th of April 2008 and later ratified the convention on the 19th of July 2010. The signing of the convention led to the establishment of The Persons with Disability Act 2008. The Persons with Disability Act 2008 is “an Act to provide for the registration, protection, rehabilitation, development and wellbeing of persons with disabilities, the establishment of the National Council for Persons with Disabilities (PWD), and for matters connected therewith” (Act 685, 2008). This act has since then provided the legal foundation for policies and legislations concerning disable individuals.
The act defines person with disability 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.” (Act 685, art. 2), therefore includes those with cerebral palsy.
• Services and Support System
There are various service and support systems for the disabled community in Malaysia be it governmental or non-governmental organisations.
• Governmental Support
A national body, the National Council for Persons with Disabilities was formed in 200, in line with the implementation of PWD Act to oblige and oversee the policies implemented under the Act. The line Ministry of this body is the Ministry of Women, Family and Community. The minister chairs the council, discussing issues with the disabled community alongside Secretary General of the other ministries involved.
Several ministries have the responsibility to provide for the disabled community, namely; Department of Social Welfare, Ministry of Health, Ministry of Local Government and Housing, Ministry of Rural Development, Inland Revenue Department and Ministry of Education (Special Education). These ministries have implemented policies based on the Person with Disability Act 2008 within various sectors, strictly prohibiting discrimination against the disabled.
Besides that, the government initiated the Kad OKU (Orang Kurang Upaya). Kad OKU, which translates to Card for the Disabled Individual, was issued to those who registered to the Registrar General for Persons with Disabilities. With the card, disabled individuals could enjoy special privileges which includes medical and rehabilitation benefits, occupational training, special needs education, financial support, prosthetics and support gear. These individuals will also be considered for Workers with Disabilities Allowance, care and shelter, training under NGOs, as well as job opportunities (Hussein & Yaacob, 2012). Registration is purely voluntary and eligibility criteria applies.
• Non-Governmental Organisation (NGO)
Among non-governmental organisations, there are those that deal with disabilities in general also some that is specific to cerebral palsy. SI World Malaysia, is a non-governmental organisation that provides sensory integration therapy, occupational therapy, speech therapy and physiotherapy for the special needs community. There is also Community-Based Rehabilitation Centre (PDK) Malaysia, a one-stop centre for intervention, advocacy, information and training establishment for the disabled community. They have various centres all around Malaysia and they work closely with the Department of Social Welfare Malaysia.
GAPS (Gabungan Anak-Anak Palsi Serebrum), an organisation that actively provides support to children with cerebral palsy. They conduct regular social media campaigns as well as sports and inclusion activities such as Frame Football and CP Camp. They also have one-stop centres for cerebral palsy, focused on research and development, empowerment and training as well as conductive education.
These are just a fraction of the non-governmental organisations that exist in Malaysia. There is also Sarawak Cerebral Palsy Welfare Association (SCPWA), Hope2Walk, and Malaysian Care to name a few.
The Malaysian environment is still not very conducive for disabled individuals despite “Accessibility” being a key area in the National Policy for PWD (2007). At most, there are elevators, wheelchair ramps and toilets for the disabled. Conventional schools, tourist hotspots among many others still lack the facilities. Nevertheless, parks in Putrajaya and Kuala Lumpur has the facilities necessary (Hussein & Yaacob, 2012).
As for public transportation, the needs of disabled individuals are still in progress. Rapid KL, a Malaysian transportation agency came up with a prototype of 100 non-step buses with flip-out ramps. But the endorsement was refused by the PWD due to poor design. Yet, the non-step buses still run in several major areas in Klang Valley. Perhaps the only accessible transportation is the LRT and MRT, with elevators available for the disable and parking spaces for the disabled.
Concession parking passes can be obtained when the disable individual shows their Kad OKU. There are several public spaces such as shopping malls and schools that provides disabled parking. However, it is often abused by civilians due to lax in enforcement. Concession fares are also encouraged by the government of Malaysia. MAS airlines offers up to 50% concession for domestic flights. Plusliner bus service also offers 50% concession for the disabled.
Despite various efforts, the existing facilities still pose a barrier to the needs of the disabled as claimed by experts. In an article entitled “Poor Facilities for the Disabled” dated 12th of May 2017 published by the STAR newspaper, Associate Prof Sabariah Mohamad, supervisor for a study conducted by a group of students from Universiti Teknology Mara (UITM) gave her views. She mentioned that the existing infrastructure in Penang poses confusion and danger for the disabled. Tactile pathways and ramps are just not sufficient (Thevadass, 12 May 2017).
• Awareness of Cerebral Palsy
In terms of advocacy for cerebral palsy, there is an organisation called Malaysian Advocates for Cerebral Palsy (MYCP). MYCP is a registered NGO which serves as an advocacy and support groups for individuals with CP and/or family members of those with CP. They also connect families of those with CP to doctors, therapists, educators and activist to reach out and share stories, experiences, views and sentiments. Their main mode of outreach is Facebook but they also conducts talks from time to time.
Some of the NGOs such as GAPS and PDK conduct talks and run campaigns from time to time. There are also blogs written by parents of children with cerebral palsy entailing their experience in efforts of advocating and educating the public. Experts also play their part in raising awareness of cerebral palsy by writing articles online. There is a website portal called MyHealth by the Ministry of Health Malaysia which discusses cerebral palsy among many other disorders.
Awareness of cerebral palsy in Malaysia is still a work in progress. It is difficult to gauge. However, there are speculations of lack of awareness among civilians. An article entitled “Study shows that Malaysians don’t understand disability” was published on the 21st of November 2017 in the Malaysian local newspaper, STAR. The article explains that the concept of disability, which includes CP has yet to be grasped by Malaysians (Indramalar, 21 November 2017).
The level of awareness is also related to inclusion of the CP individuals in Malaysia. The government of Malaysia has devised policies in attempt to look after the needs of the disabled so that they would not be left out.
However, the perception of Malaysians towards the disabled community still needs to be improved. An interview with Maniam Sinnasamy, Project Manager, United Nations Development Programme (UNDP) Malaysia was conducted by Dorodi Sharma of Disability News and Information Service (2010). In the interview, Maniam mentions that the needs of the disabled are viewed as welfare services by the state and NGOs. Disabled individuals would prefer that these needs are observed as equal rights instead of a form of support (DNIS, 2010).
Reports shows that there is a lack of understanding among the general public. This lack of understand- ing has resulted in children affected by disabilities to remain hidden, feel isolated and often discriminated. Parents of these children are also constantly left in a dilemma (Indramalar, 21st November 2017).
Authors of this article:
Rajvin Kaur Randhawa, Kiirtaara Aravindhan (HELP University), Anasuya Jegathevi Jegathesan (HELP University), Siti Salina Abdullah (University Malaysia Terengganu)
*NOTE: The Malaysian Mentor was given permission to publish this article and the entire series. This article was sent to us by Miss Rajvin Kaur who lives with Cerebral Palsy in Malaysia. This is her story. She is also a HRDF Certified Motivational Trainer. We hope to help this young and ambitious lady to achieve her dreams to provide motivational training. You can help too. She spends her time creating awareness on Cerebral Palsy and The Malaysian Mentor aims to help her in her mission for the benefit of all. What about you, are you on a mission to make the world a better place? Please do get in touch if you want us to tell your story. Thank you.
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