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.
AN INTERVIEW WITH A FELLOW CEREBRAL PALSY FIGHTER
A short email interview was conducted on the 28th of October 2017 with a young talented women with Cerebral Palsy. The respondent was sent a list of well-prepared questions that she had to answer and revert via email. Answers were received on the 3rd of November 2017. The outcome of the interview is as follows;
Question 1: How well do you understand the concept of Cerebral Palsy?
Respondent believes she understands Cerebral Palsy to an extent. She is aware of the different types of Cerebral Palsy which relates to the different parts of the brain. Trauma and injury to the certain part of the brain results in impairment of motor functions. The three main types are spastic, ataxic and athetoid. The classification also being more specific based on areas and number of limbs affected. Respondent personally believes that therapies have helped immensely to improve her condition from the way she was before. For her current diagnosis, she is aware she has spastic diplegic cerebral palsy, which mainly affects her lower limbs with minor effect on her upper limbs.
Question 2: Do you experience Prejudice, Discrimination, Fear and Isolation on a daily basis due to your condition?
Respondent admits that prejudice and discrimination is something she can’t avoid as it happens on a regular basis. Isolation is very common but she wouldn’t let fear dictate her. Because of her condition, the respondent was bullied, rejected, made fun of and disrespected for years. However, she is trying her best to stay positive and move forward while chasing her dreams.
Despite bad experience growing up, respondent’s family and close friends were wither entirely to support and provide encouragement. Many of her teachers and lecturers for example has been very supportive as well. Respondent always tried her best to look at the positive regardless of how challenging the situation may be, as advised by her parents. Respondent believes her parent’s approach has a lot to do with her positive outlook.
Question 3: Do you encounter Emotional Challenges in your daily life such as Depression, Loneliness and Anxiety?
The respondent believes everybody has their own set of emotional challenges but she believes she was not was depressed. She gets stressed and cried when she was frustrated but never allowed herself to stray too far from being positive. The respondent rarely got lonely as her time was occupied with work, study, family, friends and hobbies. She swim and does physiotherapy to keep fit. These things also keep her anxiety at bay. The respondent said that she focused on the things that she does and remained happy.
Question 4: What kind of Physical Challenges do you encounter in your daily life?
Respondent claims that if she had to choose a physical challenge, it would be muscle overstretch or overuse as she walks long distance. Climbing stairs is also a challenge as her ability to balance is not very good. Her poor balancing abilities also prevents her from passing the roadside curbs, especially the high structured ones. She also faces difficulties crossing the ditch-drain, which usually become more challenging on a regular basis.
Performing fine coordination activities has been a challenge to the respondent. It takes her a long time to complete tasks such as typing, writing, sewing, tying shoe laces among many others. This is the reason why she always start her tasks early in the day just so she can complete them. Life has not been easy for her but she is trying to adapt and improvise.
Question 5: How supportive is your Support Structure? What are the issues faced by your family and friends?
The respondent firmly states that support is crucial when you are challenged with a disability. For her, her family and friends are her rock. Her family especially, has sacrificed a lot for her in terms of their time and effort, to make sure that all her physical goals are met on a daily basis. They put so much work and dedication to make sure the therapies sessions happened on schedule and all appointments are one time and went well. School and work can be rough but my friends and colleagues make the coping process bearable.
That’s why my family and friends are important although there are other people question them for helping me out or be friends with me. They sometimes face isolation themselves but it seems that don’t bother them as much every time I have discussions with them about.
Question 6: Do you experience any Accessibility Mobility and Transportation issues regularly?
According to the respondent, yes, because she usually does not drive long distances. Public transportation sometimes presents their own issues towards disabled people. She just usually relies on family and friends to travel long distances.
Question 7: Do you receive any Therapeutic Support?
The respondent does horse riding and swimming. She believes it is therapeutic and keeps her fit.
Question 8: Do you have any final message to share with fellow individuals with Cerebral Palsy?
Be brave to try something new every day. Small milestones bring small victories. Many small victories build up bigger ones. Smile, dream and believe.
Rajvin Kaur Rhandawa
My journey has and will continue to be bumpy, winding and strewn with obstacles on my life’s pavement but I am determined to ride on as a Cerebral Palsy survivor, motivational speaker, blogger and writer.
It is with greatest and deepest gratitude that the author, as a physically challenged individual have made her mantra in the writings of this chapter. The author has so many to thank that the list is endless. God has blessed the author with a very supportive family that is her mum, dad and her siblings as well as her true friends and caregivers. They have been the pillar of strength for her and catered for her needs day in and day out from the first day of school till now and throughout her journey as a CP survivor. Ultimately making her the person she has become today; a motivational speaker, blogger and writer.
Authors of this article:
Rajvin Kaur Randhawa, Kiirtaara Aravindhan (HELP University), Anasuya Jegathevi Jegathesan (Taylor’s 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 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.
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