At the recent event organised by The Rotary Seeing Eye to Eye Seminar at Syuen Hotel, Ipoh, Perak, on 18th October 2014, in conjunction with the World Sight Day, I presented my experience of the challenging journey from the sighted to the blind world.
'IntroductionGood morning. First and foremost, thank you to Dr Lee and his organizing committee in allowing me this opportunity to share my experience of crossing the bridge from the sighted world to the world of darkness. Let me invite you into my world for the next 15 minutes. I am going to share with you how I cope with my sudden sight loss.
InvitationThe first step into my world is to close your eyes and join me in my journey crossing this bridge.
The unexpectedLife is full of unexpected twists and turns. You may plan but at times it may not turn out to be what you have planned. Just like my life was turned upside down when infection caught me unaware and resulted in total loss of sight in both my eyes. That was in year 2008. Then, I was the General Manager for a company dealing with heavy equipment machineries based in Kunming, China.
Traumatic experienceLosing one’s eyesight in adulthood is very traumatizing, devastating and scary. I find it difficult to describe my ordeal but you can just imagine yourself falling into a dark bottomless pit and nothing to cling on , not knowing when it will stop. What’s worse was, there was precious little help for adults like me who became blind at the ripe old age of 50 and above, as I found out.
No directionAfter the final diagnosis given by my doctor informing me I am irreversibly blind in both eyes, no further guidance or direction was given as to what to do next, where to look for help, how to survive in this world of darkness.
Get up - Facing ChallengesI am blessed with a supportive and proactive family – my wife and children. With their support I was able to tap into my inner strength, tell myself to Get Up and accept that my life forward will be very different. I have to survive in this new dark world, relearning new skills eg simple tasks like eating without seeing what you are eating, walking in the dark with the help of the white cane.
Get Out – Seeking HelpIt saddened me to say there is not much help and support available for an adult blind. First and foremost, when I went to seek information and help from an NGO, no counseling was available for both my wife and I. And when I wanted to enroll for the rehab program I was turned down. You know why? I was above 45 years of age. We came away more depressed, lost and angry. But we did not give up. With persistent knocking, calling for many months the ICT department of the NGO I was finally accepted to undergo 5 days basic course in learning how to use the screen reader for computers.
Get Going – rehabilitationIt is very important for a newly blind to learn how to move around independently with a white cane. In my case I was not given the opportunity to go through Orientation and Mobility skill training. However, that did not dampen my spirit to go forward. With the help of the Internet and a newfound blind friend I picked up enough tips to get around with confidence with the white cane. Slowly and surely with the support from my family I learned how to take care of myself, e.g. make a cup of coffee without scalding my fingers, spreading butter on the bread without messing the table top. Now I can even pour myself a glass of whisky with ice in it.
Going forward in LifeIn the last few years, I realized that assistive technology is vital in enhancing the independence of the vision impaired. With ICT I am in communication with friends and relatives from all over the world. I am updated with what’s happening around the world, politics, economics, disability rights and accessibility issues, and so on, so forth. To share with you Malaysia is still way behind in terms of accessible facilities and information.
Costly to be blindYou need to be rich to be blind. Why? Licensed screen reader software cost RM4000.00. This is on top of the cost of computers. Braille note taker cost RM20,000. This is why I love my I phone and Mac laptop. They both come with built in voice over feature which is cheaper than the computer with third party screen readers. By the way Apple do not pay me for promoting their products.Not wanting to lose out to the younger generation, this uncle also Twit, blog and facebook. What’s app, skype, and viber are no strangers to me and having interesting ringing tones is also fun.
StoryHere let me share a story. One day I was in this room with a few blind friends chatting away. Suddenly a cat meowed. Next I heard a door opened and my blind friend was trying to shoo the cat out tapping his cane on the door making so much noise. Another friend was commenting that with so much noise and shooing the cat will hide and stay put and both started arguing. I could not hold back my laughter as it was not a real cat but my phone’s incoming ringing tone.
Bridging darkness with HopeLosing sight in adulthood is a daunting experience. It is not easy for this group of people to come to terms and accept their blindness as ego and embarrasement come into play. Without support and counseling one can easily sink into deep depression, causing families to break up.
ABASWith the insight of my challenging journey crossing the bridge into the world of darkness, my eyes opened to the lack of awareness of adult blind and their needs to continue to live a life as normal as can be. Hence the set up of ABAS – the Adult Blind Association of Selangor.ABAS hope to reach out to newly adult blind, with the aim to provide help and support to them and their care givers... bridging darkness with hope. We want to let them know they are not alone.Before I hand over the mike I would like to say this. Though I am blind, I continue to live my life to the fullest. I play golf, I relearn playing classical guitar with the help of U tube. I take care of my 2 dogs. I am actively involved in advocating for better access to facilities working with the local councils.
If U ask me what I have achieved in life. I will humbly say this …. I Have Achieved Blindness.Thank You. Now you can open your eyes.'More challenging times ahead!