Growing Up with Spina Bifida – A Living Experience
In conjunction with Spina Bifida and Hydrocephalus Awareness Month, Spina Bifida Association of Malaysia (SIBIAM) presents a series of articles modified from our website (http://www.sibiam.my) and the Beyond the Cord quarterly newsletter – an initiative by the District Action Group on Spina Bifida and Hydrocephalus (DASH), Rotary District 3300. This article is an original piece and has not been published elsewhere.
When I was asked to write about my experience as a person with spina bifida, my first thought was “Oh boy do I have a lot to write about! The mindset of society at large about disabled individuals, the lack of accessible facilities in Malaysia, the dearth of suitable job opportunities for persons with disabilities, the quality of life especially as we age…” The list went on and on. As I sat down and thought about it, I realized I had to detail what it is like growing up and living with spina bifida, not just about disabilities in general.
Spina bifida has affected me literally from my head to my toes. I have myelomeningocoele, the more serious variant of the condition. Each complication from my myelomeningocoele required a different method of management. Let me list a few of them:
- I have hydrocephalus, which necessitated the insertion of a ventriculoperitoneal (VP) shunt from my brain to drain out excessive fluid.
- I had dislocated hips that required soldering in place – an 8-hour surgery for each side!
- I have urinary incontinence, which requires intermittent catheterization.
- I also have neurogenic bowel, causing fecal incontinence and constipation. This is remedied by taking laxatives and enema, as well as adult diapers.
Many adults say that their schooling years were some of the best years of their lives. Unfortunately, I cannot share that sentiment. I had to deal with skeptics from the get-go; from the principal, teachers, right down to my classmates. My parents were having nothing of that. They went toe to toe with principals and teachers to make sure I attended classes with able-bodied children.
Murmurs and whispers were accompanied with bewildered looks from my classmates – why is this fella in a wheelchair? I was exempted from Physical Education (PE) classes because of my condition and this did not sit well with my peers. Needless to say, I did not have many friends in school.
An unforgettable experience happened when I was 17. About 2 months before my SPM examinations, my VP shunt malfunctioned twice. I required surgical intervention on both occasions, during which I was rushed to Hospital Kuala Lumpur (HKL). To say I was unprepared for my exams is an understatement. Just before my Bahasa Melayu oral exams, my father (who is a paediatrician) gave me a heavy dose of antibiotics as prophylaxis against infections after my surgery. I persevered and managed a respectable Grade 2 for my SPM.
College life was a bit easier because most people around me had matured and were less petty. What I did not anticipate was that along with that maturity came “power play” among my course mates. One often overlooked aspect of growing up with a disability, specifically spina bifida, is the difficulty in processing non-verbal cues. I was totally unprepared for the “politics” of making friends.
Some naturally gravitated towards me out of pure curiosity to better understand what was wrong with me. I was more than happy to entertain their queries about spina bifida. However, there were those who assumed I was being arrogant and just shunned me. This made me more inclined to be a people-pleaser in order to make more friends, which inevitably led to some unfortunate encounters – that is a story for another day.
Although my social circle remained small, there is one individual from my college days to whom I owe a great debt to. He was and continues to be a guide and counsellor in many aspects of my life, whether academically, professionally or psychologically.
Working life has proven to be challenging with its fair share of ups and downs. I can recall how excited I was to land my first job – as were my parents! It was a trainee legal executive position in a leading insurance company in Kuala Lumpur. The excitement, however, did not last as I realized I would be treated no differently than everyone else. I was thrown into the deep end right out of law school. I lasted a mere 6 months in that company.
While it is every disabled person’s desire to be treated like others, a little acknowledgement that we are in fact physically disabled would be appreciated. Most employers do not understand that we have lifelong complications. For example, a person with spina bifida like me has to deal with issues that do not end at childhood. We need things to be explained to us in a structured manner and not just a “go figure it out yourself” situation which is the norm in most working environments.
I also encountered the attitude from others that expect us to be grateful for having a job “despite having a disability”. Disabled people want to be employed because of our skill set, knowledge and qualifications; not out of pity or, even worse, as a Corporate Social Responsibility (CRM) mascot. It is bad enough to be born with a disability – we don’t need constant reminders of it.
I would like to end by saying that despite the many pitfalls and challenged that I have highlighted here, I am convinced that individuals with spina bifida are capable of so much more than we are given credit for. However, we can only reach our maximum abilities with the right amount of encouragement and help from family, friends and society at large.
As a very good friend once said: “Faith manages…it always does.”
By Harmesh Singh. Edited by Dr Chua Li-Shun.
World Spina Bifida and Hydrocephalus Day is celebrated annually on 25 October. This year’s theme is “Elevate Your Voice”. SIBIAM is celebrating the day with a colouring competition for spina bifida children, themed “My Voice Matters”, and writing competition for spina bifida teens and adults with the theme “Inclusion is the Solution”. For more information, email info@sibiam.my.