Leaving my comfort zone

MY paralysis is so severe that I do not have intrinsic hand function. This means I do not have the fine motor skills essential for many activities of daily living. I have great difficulty manipulating small objects and even holding a spoon for eating. With those limitations, it is difficult for me to perform many self-care activities without someone supporting me.

I used to ask myself if a severely disabled person like me can work in an office environment. Can I manage and survive outside the comfort and safety of my house without a fulltime assistant? So many things can happen, some expected, many unanticipated.

The fear of Murphy’s law is real. Anything that can go wrong, will go wrong. Incidents like falling off the wheelchair, getting stuck in a place without accessible facilities, and the inability to manage my own needs, can happen. These have happened before, therefore the fear.

Fortunately, those times I was not alone, especially when I was far away from home like in Tokyo, Jakarta, and Bangkok. My wife or friend was always there with me to extricate me from those sticky situations. I do not want to think what would have happened if I were by myself.

I have accepted that I will never be able to go out and get regular work in an office like most people although deep inside I wished I could. And like the oft heard warning, “Be careful what you wish for, it might just come true”, that wish did come true.

I have been working four days a week since last September commuting between my house and the Malaysia Airlines Berhad Academy in Kelana Jaya, which takes around 45 minutes by car. I conduct training on Disability Equality Training and Disability-Related Services Training for all customer facing staff of the Malaysia Aviation Group.

The training moved to the Malaysia Airline Flight Management Building at Kuala Lumpur International Airport in December. I have been taking the train to work since then. This is almost like fulltime work. I have to wake up in the wee hours of the morning and do not reach home until late in the night.

I was fearful initially, wondering if I could manage by myself. This has been a punishing rigour for me. I have never worked so hard and so much on a daily basis before. Friends who have not seen me for a long time noticed I have lost weight. Their observations were spot-on. My clothes have become looser. It definitely has taken a toll on my already frail health.

Despite that, I am having the time of my life. I get to meet a lot of interesting people, who are eager to learn more about disability and disabled people. I am grateful to be given the opportunity to impart my knowledge to people who will then be using the skills to better assist and interact with disabled people.

Most importantly, I have learnt that someone with my level of impairment and functional limitations can work outside. I also found out I could perform many of the tasks I have been depending on my wife for. There are only four instances where I require assistance from the point my wife and I part ways at the train terminal.

I need the help of the station staff to assist me in boarding and disembarking at Kuala Lumpur Sentral. There is a six-inch gap between the platform and train. My front caster has gotten wedged in between the gap several times, which nearly caused me to be thrown off my wheelchair. To exacerbate the situation, the station staff who were assigned to assist me were not properly trained in the safe handling of wheelchairs in situations like this.

I have written to the CEO of Express Rail Link, informing her the gap is a safety hazard that could cause serious injury. I provided several interim and permanent solutions. The vice-president of customer service management replied. However, they have not taken any noticeable action to assure me they are seriously looking into resolving my complaint other than providing a staff member to assist me. The gap remains the biggest barrier in my entire journey.

The third instance when I require assistance is going up a long ramp at the Flight Management Building upon leaving the premises. The staff at the building have always been more than willing to push me when I requested for help. Sometimes, they would even proactively offer without needing me to ask.

And lastly, the cashier at the self-service cafeteria where I have my breakfast, lunch and tea would serve me without hesitation. At other times, people having their meals in the cafeteria or participants from the classes I taught would approach to offer assistance.

From what I have gone through these past seven months, my fears were mostly unfounded. I now believe people with my level of impairment and functionality can work outside our homes and in an office environment.

All that is needed in society are reasonable accommodation and the removal of barriers, which is required under the building by-laws and Persons with Disabilities Act 2008.

On disabled people’s part, we should try to experience what life can really be like outside by boldly stepping out from our comfort zones. The experiences these few months have changed my worldview. It has taught me that nothing ventured, nothing gained.

I also believe that if ever I am caught in sticky situations like falling off the wheelchair, the people around me would be more than willing to rescue me. I have never been left to fend for myself. The strangers I meet every day on my way to work and back who have unconditionally lent a hand when I needed one have reinforced my faith in the kindness of humanity.

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