The authors in this chapter highlights the reality of Cerebral Palsy in Malaysia. The chapter is a blend of experiential accounts 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: THROUGH AN EXPERIENTIAL LENS
Rajvin Kaur Randhawa has been living with cerebral palsy for the past 34 years. In Rajvin’s case, cerebral palsy manifested in her as a neurological condition. She momentarily stopped breathing on the second day after her birth which caused a lack of oxygen to the brain. In that period, her movement, posture, motor skills, and muscle tone were affected which then manifested as cerebral palsy. The author’s condition is classified as spastic quadriplegia based on her topographical distribution and motor functions. Here, she provides experiential details on living with cerebral palsy in Malaysia.
The author, just like many others in Malaysia who suffer from cerebral palsy or other disabilities and in need of special care often face a lot of challenges. This includes physical, emotional, learning among many more. The most common challenge faced by cerebral palsy patients in Malaysia, which the author has experienced herself is societal perception towards CP. Arising alongside these experiences, the author also faced emotional challenges, physical challenges, lack of moral support, issues of accessibility and mobility, transportation difficulties, and government/civic support. A more detailed description is illustrated as follows:
Societal Perception Towards Cerebral Palsy
Based on the author’s opinion and experience, society sometimes looks down on disabled individuals. The author recalls that whenever she goes out to a shopping mall or other places, she is often questioned by a handful of people about her condition. She feels that society should be more aware of the concept of CP by equipping themselves with the knowledge of CP and immersing themselves in the experience so that they will better understand the concept of cerebral palsy.
Those with CP patient or other disabilities are often labeled as handicapped. This leads to prejudice and discrimination, intended to insult the disabled individual. The author, just like many other disabled individuals in Malaysia are often filled with fear leading to isolation. She prefers not to mingle with society.
In conclusion, the Malaysian society should take more steps and initiatives to understand the concept of CP and other disabilities specifically by changing their attitude and mindset towards the disabled. Be positive and treat them like normal people. Cerebral palsy patients and others with disabilities in Malaysia should be accepted just the way they. They should be given equal rights and support despite their disabilities, which is no cause to be shunned in society.
The author, and possibly other disabled individuals in Malaysia often experience emotional challenges such as depression, loneliness, and anxiety. The author describes specific challenges below and how she overcame them;
Individuals with CP, like the author, occasionally experienced depression. This is due to the inability to deal with daily challenges of the disability. The author had an episode of depression. In that period, she began questioning her disability, wondering why she was not normal, where she would not require aid to do things everyone else not affected could do easily.
However, the author eventually dealt with her depressive state by remaining positive. The author changed her perspective towards life, seeing herself as a CP fighter and survivor instead of a victim. She surrounded herself with happy people, which she recommends others with CP do as well. The author also found relaxation techniques to be useful when dealing with her depression. She used breathing techniques to relax herself and maintain peace within her.
Loneliness is common among disabled individuals due to various reasons. Some experience loneliness after their parents abandoned them. Some experience loneliness when their parents leave them at home alone for a short while. Negativity and bad thoughts can also cause loneliness. The author however is blessed to be always surrounded by people. However, there are some instances where her loved ones have to travel and she is left alone, experiencing loneliness at that time.
During moments of loneliness, the author coped by keeping busy and doing what she loved. She recommends that keeping busy and doing what a person enjoys doing is the most effective way to curb loneliness. She does things to keep her mind occupied. Her profession as a motivational speaker and writer has kept her company on several occasions. Surrounding yourself with the right people is also important. Whenever the author felt lonely, she would call a friend
Anxiety involves persistent worrying. CP individuals go through inconsistent muscle tone daily, which is a cause for anxiety. Hence, anxiety is common among individuals with CP. Based on the author’s personal experience, she consistently faces anxiety but she has a set of practice which helps calm her down.
The author suggests that the best way to overcome anxiety for CP patients and others with disabilities is to be thankful for what we have. She says that “Life with cerebral palsy is a blessing and not a bed full of roses despite challenges thus far” (Rajvin Kaur Randhawa, 2017).
Opening yourself to making new friends also helps. The author was privileged to be able to mix with people of various age groups and backgrounds. With that, she found true friends that made her life journey more meaningful for the past thirty-two years. She proudly acknowledges that because of her loved ones and true friends, she would consider Cerebral Palsy as a blessing instead of suffering.
Another common challenge for cerebral palsy patients like the author herself lies in the physical domain. For example, the inability to walk and move from one place to another. Hence, she relies on a wheelchair and a walker – while being assisted by another person – to travel from one place to another.
The author also often encounters muscle spasticity, common among cerebral palsy patients. Spasticity is defined as stiffness of the muscles that often interrupts the ability to control movements. Therefore, treatments such as physiotherapy serves as an important intervention for cerebral palsy patients like the author. The author began physiotherapy at the age of one at the Kuala Lumpur General Hospital and also in 1995. She went to University Malaya Medical Centre (UM) after undergoing a surgery called Selective Dorsal Root Rhizotomy (SDRR) to reduce spasticity from tight muscles.
Initially, the author was clueless about the circumstance of the treatment and was reluctant to do exercise vigorously, due in part to the fact that she was also schooling at the time. She did not attend therapy regularly until 2013. Nevertheless, the author recognises and acknowledges the dedication and encouragement given to her by the Physiotherapist and Occupational Therapist in Rehabilitation Department recently since 2015.
In 2016, the author met her old college friend who became a trainer that changed her life. The author transformed from someone who used to hate exercising to someone who loved it. Ever since, the author’s physical capabilities improved drastically and now, she can walk by herself, unassisted, with the walker.
This is evidence of the competency of physiotherapy. The author recommends it for every CP patient and others with disabilities in order to improve the quality of lives.
Learning is also a common challenge for cerebral palsy patients like the author and others with disabilities in Malaysia. As a cerebral palsy patient, the author was fortunate, blessed, and privileged to receive an inclusive education from kindergarten until University which not many, suffering a similar condition would have had a chance. The author recommends that every patient with CP and others with disabilities to attend mainstream education just like she did if they are able to. Below are the main challenges the author faced from kindergarten up until University level:
- Acceptance in Society: In kindergarten, the author had difficulty finding a proper friend that would accept her for her condition. She thanks her beloved mum who had to accompany her in the class the whole day. Nevertheless, she never gave up hope and this helped inculcate the fighting spirit she still has until today. The author had to be given extra time to complete tasks and examinations such as during public exams and college exams and she passed all these examinations reasonably well. Currently, the author is a motivational speaker and blogger, and writer. The author elaborates more on this in the next topic
- Discrimination: In primary school, the author was transferred to the slow learners’ class, but her parents insisted on her being in the normal education stream. Eventually, she did well and proved everyone wrong, and performed better than most other normal children.
- Unfairness in Society: In secondary school, the author was given a class on the second floor and she could not walk up the stairs. Hence, her parents had to ask the Parent Teacher Association to intervene and relocate the class to the ground floor. Many were angry with this decision but eventually relented and agreed to the class relocation.
• Extra Time to Complete Tasks and Examination: The author had to be given extra time to complete tasks and examinations especially during UPSR, PMR & SPM. As much of a hassle it was, she made it through and passed all examinations reasonably well, landing herself in college.
The author personally did not go through financial constraints but based on her observation, many individuals with CP faced financial constraints as a challenge. According to a study conducted by UNICEF, some did not have access to special needs education and required facilities due to the lack of funds. This applies to both rural and urban communities.
As a CP patient, the author was fortunate to have supportive parents and family who educated her and made sure she graduated with a Second Class Honours Degree from Help University. However, she realises that many parents cannot afford to do the same for their disabled child as many work double or triple jobs. Some parents also face difficulties in enrolling their children in a proper school or college.
Personal Support Structure
Having good support structure and moral support is also another integral factor. As a cerebral palsy patient, the author was fortunate enough to get a good support structure that consists of her friends and family who made it possible for her to achieve her dreams of becoming the person she is today.
The author believes that moral support is essential for the achievement of every individual with dis-abilities just like herself. In the author’s opinion, moral support is defined as emotional or psychological backing as opposed to material help. For example, some parents of CP patients are not supportive enough to encourage them to live their dreams despite their challenges. The author was very fortunate to have supportive parents, family, and friends who were supportive of her till University level, but there were one or two challenges along the way and even at present such as uncontrollable emotions.
- Ego: The author felt like some of her family members felt sorry for the way she was living, especially when she was in primary school. But, the author took it as reason to prove everyone wrong by putting in extra effort to be the person she is today. Her family finally started treating her equally.
- Anger: The author is sometimes angry for being the way she is. She gets angry at the fact that it had to be her with cerebral palsy. But, she would then start to reflect on how blessed she was. She had good friends and family around her who constantly tried to put a smile on her face.
- Resentment: There are moments where the author was filled with resentment towards God. The author, being religious often questioned why God is unfair and why God made her the way she is. But, she overcomes the resentment by praying. Caregivers also play an important role in the lives of cerebral palsy patients and others with disabilities in Malaysia. Based on personal experience, the author is blessed to have good caregivers to take care of her. However, there were a handful of them who didn’t treat her well as they didn’t know how to handle a CP patient. Therefore, she recommends that cerebral palsy patients and others with disabilities in Malaysia should have good caregivers to take care of them.
Government and Civic Support
The author believes that government and civic support is essential for cerebral palsy patients just like every other disabilities. Government support refers to the initiative and measures taken by the government of Malaysia whereas civic support refers to measures and solutions taken as a collective effort by the people of the community to make society a conducive environment for the disabled.
Accessibility is the most common challenge faced by cerebral palsy patients like herself and others with disabilities in Malaysia. Some disabled individuals face difficulties finding ramps, lifts, and toilets in schools, colleges, and other public domains. A lot of work has to be done in some places by the government authorities in Malaysia to make it more disabled-friendly. The author personally experiences challenges in public places such as in school or college days or even in shopping malls.
Mobility and transportation are the two main challenges faced by cerebral palsy patients like herself and others with disabilities in Malaysia. Most patients like herself find mobility and transportation a great challenge when they have to travel from one place to another using wheelchairs, walkers, and taxis. There are many instances where taxis do not want to accept people with special needs. It is something the author personally experienced having been refused many times. A lot of work needs to be done to make travelling easier for persons with disabilities so that they can maneuver themselves easily using public transport.
Therapeutic Staff Support
Therapeutic staff support is essential for those with cerebral palsy and other disabilities. In the author’s opinion, therapeutic support refers to workers serving as a team to help disabled individuals who have serious emotional problems leading to inappropriate behaviour.
Sometimes a patient with cerebral palsy like the author in Malaysia might act disrupted in schools, homes or other public places. Therapeutic staff support professionals play an important role to follow treatment plans advised by other mental health care experts to intervene and change negative actions. Among useful therapeutic staff support based on the author’s experience in Malaysia for cerebral palsy patients and others such as follows:
- Counselling and Behaviour therapy
- Writing thoughts in journals
- Calling friends
- Thinking positively
The Role of Counselling
Based on the author’s experience, counselling has helped her in numerous ways such as;
From her experience, counselling has been the most successful technique in developing self-awareness. Whenever a current problem appears to be at a dead-end, she will be able to look at the present instead of the past. Doing so helps her think of solutions.
Counselling has made her a positive person despite life’s challenges. The author used to be an angry and negative person due to her condition. However, counselling helped her get past her condition and she is not better at managing her emotions.
Through counselling, the author has learned more effective ways to deal with her stress. She came to understand that by talking to someone, she not only feels relaxed but she is better able to regulate her emotions. Today she finds that she is much happier, which has manifested in her career as a motivational speaker, blogger, and writer.
Counselling has helped the author to learn self-control. From her experience counseling has changed her life in a way that she is more in control of the things happening to her.
Apart from that, counseling has helped her to connect and communicate better with associates, family, and true friends and caregivers. Counselling has helped her a lot to become a changed person from the person she was then till the person she is today.
Perseverance Will Prevail
On the 27th of April 2014, the author Rajvin, was among the 1216 candidates to graduate at the HELP University’s 26th convocation at the Shangri-La Hotel Kuala Lumpur. The author confesses that was the biggest moment in her life. Special thanks to friendly lecturers and helpful best friends who made it easier for her to accomplish her dreams of graduating with a Bachelor of Communications Honours degree majoring in Public Relations. Currently, she is a motivational speaker and blogger as well as a writer. The author is so thankful to her family and true friends for making this happen.
Cerebral palsy did not hinder the author from participating in social events and become the person she is today, a motivational speaker. Your condition should not hinder you or others with cerebral palsy and others with disabilities in Malaysia from becoming what they want to be.
The author first started motivational speaking in August 2014 in Bakti Mind where she had to present her thoughts and experiences of being an individual with cerebral palsy in an inclusive society. It was an amazing experience where she dealt with people from all walks of life. It thought her that she wasn’t the only one who had problems and to count her blessing. It was an amazing experience as she went up of stage for the first time in front of a large crowd although she was a bit nervous.
The second experience was being appointed as a Good Will Ambassador back in 2014 for My Mo-bile University and even at present. It is an online learning portal for people with or without disabilities where they can learn for free just about for anything that they are curious to know. It was also an amazing experience where she was asked to talk about various issues that are currently happening among people with disabilities like herself and others in Malaysia. She learned a lot from there.
One of her recent motivational speaking engagements was in June 2017 among others that were given this year. It was very memorable for her as she had to work with young children aged 9-12 years for the first time where she had to give them tips on how she achieved her small step of success with cerebral palsy at one of the religious centres near where she lived. It was one of the blessed moment as she received a gift from them, the children were so happy that they learned a lot from her.
Apart from motivational speaking, the author is also a writer and a blogger. Among her recent writing engagements was to write about cerebral palsy awareness and many other topics in a magazine called Challenges in conjunction with cerebral palsy awareness month for the whole of October, through writing she learned how to express herself more and she feels that every cerebral palsy patients and others with disabilities should do the same if they are able to just like herself. In conclusion motivational speaking, blogging and writing has taught the author two important life lessons and she hopes others with cerebral palsy and others with disabilities will adopt it too. The life lessons that she learnt through motivational speaking, blogging, and writing are such as follows:
- To be more confident of yourself when faced with challenges. To be more confident when dealing with people in a small or large crowd and to carry yourself well in front of others.
- Never give up in life no matter what. Speaking, blogging and writing taught the author an important lesson to not give up hope and have faith in God when faced with happy or sad times.
- To be more fluent in speaking, blogging and writing. Speaking, blogging and writing has taught her to be fluent through practice.
In conclusion, persons with cerebral palsy and others with special needs in Malaysia should be given equal opportunities regardless of the challenges to achieve success just like the author. They deserve to be given unconditional love to have a productive life. As the author mentioned through this case study, cerebral palsy did not and will not ever hinder her from achieving her life goals or her small step of success. She believes in the saying that “when one door shuts another opens.” The strength is to make the decisions and move forward. The author’s advice to other CP individuals like herself and others is: “Every tomorrow starts with today, not yesterday. So keep calm and carry on!”
Her future aspiration is to be more mobile and a successful motivational speaker blogger and writer despite her obstacles under the guidance of her beautiful family, true friends, and caregiver.
Authors of this article:
Rajvin Kaur Randhawa, Kiirtaara Aravindhan (HELP University), Anasuya Jegathevi Jegathesan (Taylor’s University), Siti Salina Abdullah (University Malaysia Terengganu)
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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 to people. She spends her time creating awareness on Cerebral Palsy, and The Malaysian Mentor thanks her very much for providing this series of articles.