2017 Reflections

Another year's about to come to a close. Time do pass by us so quick and as the saying goes, time waits for no one, has truth in it. If one chooses to be complacent or wait for good times to happen or otherwise, time will just continue to move on.

 

Reflecting, a year of discovery and my independent living skills put to test and caring for my dogs.

 

Discover Myanmar, a recent trip with a few friends from the UK and my wife last October month was truly a memorable one, despite the fact that accessibility for blind travellers are practically  non existent. Challenges are aplenty such as getting in and out of narrow diesel powered long tailed boats, walking up to hillside temples and pagodas, walking bare footed in and around the vicinity of temples and pagodas under the hot blazing tropical sun could cause foot blisters if not careful.  The beautiful historical sights, however, made it all worth while and of course, the ever non-stop audio description by my wife Hong, truly contributed to an enjoyable trip.

 

Sad to share, one of our dogs named Lady, a 14yrs old Labrador succumbed to bone cancer and passed away early November. Certainly, we will miss her, she had given much joy before and after my sight loss, RIP lady!

 

It's always a good feeling when I am invited to give talks in raising awareness on adult blindness. The year too has given me opportunities to do just that. Also, I am glad to have reached out to those newly blind, providing emotional support and guidance, enabling those affected and their loved ones to continue life with dignity and respect. 

 

 

I hope the new year marking my 10th year of sight loss will continue to give me the strength and vision to contribute whenever and wherever possible. I know I can't be 100% of old self but I can be a 100% new me 

 

Happy 2018 all!

 

More challenging times ahead!

 

Hold On Be Strong

Life is indeed full of excitement, surprises and challenges. Living in the present moment is what we must do,,, thus enabling us to live a meaningful life. Surprises in life could suddenly be a life changer to one's life, this happened to me!

Over the past few years, I'd met and got to know folks, especially adults, progressively going blind due to various reasons eg. diseases, infections and accidents. Being 'thrown' in the bottomless dark pits without any emotional support make it all worse and extremely depressing to the affected and loved ones. I do believe we all have within us, an inner strength that we can tap in to overcome predicaments such as disability, etc and continue to live a life with purpose. Knowing this strength will help us to overcome the depression and face up to the new life challenges. This inspired me to compose a song, Hold on Be strong. Hopefully, inspiring those going through the difficult depression moments.

Verse 1:
When you're feeling down
And nobody wants to know
The fear in you is real
And you're all alone

Verse 2:
As you sit and watch
The people walking by
Nobody seems to care
And nobody's at your side

Chorus:
Hold on be strong
Reach out to the world
Hold on to the light
That shines in your heart

Verse 3:
When you're feeling sad
And life's is just unfair
Where's the love and care
And you'll wonder why

Verse 4:
When the day is dark
An the light's getting far
Hope is all you need
And let it be the guide

Chorus:
Hold on be strong
Reach out to the world
Hold on to the light
That shines in your heart

Hold on be strong
There's hope in the world
Hold on to hope
And make it be the light

Hold on hold on
Theres hope all around
HOld on hold on
And let it be the guide
Hold on hold on
And let it be the light
Hold on hold on
And you'll be alright

https://youtu.be/s-2rzekO9FU

More challenging times ahead!

Disabled parking out of bound to the Blind

Denying the Blind n the Deaf the right to use the disabled parking bays is clear discrimination. Excuses that the Blind do not drive and the Deaf could easily walk do not hold water. Perhaps, the authorities have the notion that being blind or deaf, they are of excellent health and forgetting that people age, having walking difficulties due to other health problems,arthritis, diabetes, cholesterol, et. More education and awareness much needed. Sad to say, it must start with fellow disabled activists to understand, to try a little kindness and practise compassion.

http://www.thestar.com.my/metro/community/2017/08/15/they-need-to-be-given-priority-the-blind-and-the-deaf-say-they-face-many-obstacles-in-parking-lots/

http://www.thestar.com.my/metro/community/2017/08/15/authorities-welcome-special-parking-bay-idea/

Life after blindness through music

The rapid advancement in technology, assistive technology and products for the blind have been a positive life changer for me. Learning new skills such as using smart phones and computer, opened up new doors and windows. Coping with blindness's is a lot easier and also in regaining my independence as much as possibly could. 

Technology has also given me an opportunity to explore music.  Happy to say that I am able to self taught playing guitar and ukulele. 

http://www.thestar.com.my/metro/community/2017/08/03/having-the-right-mindset-starmetro-talks-to-four-people-who-managed-to-cope-with-their-disabilities/

Touch screen devices, the way forward!

It's such a wonderful feeling to know that today,the blind friends are aware on the importance of mobile devices such as smartphones which provide the link to connect them with the world. Breaking news updates, emails, video/audio communication, etc are now possible and accessible to the blind community.

The fear of touch screen phones without the conventional physical buttons seem to diminish and today, more blind folks are ready to accept change and know that their lives will be enriched with more assistive technology readily available.

Due to several requests for iPhone instructional training courses, I decided to hold a series of workshops, beginners to advanced users this year. Last Saturday, a 2nd workshop for blind iPhone users was held . A group of optometry student volunteers attended the workshop, interacting well with the blind folks. It was a first time experience for the studen. Volunteers in discovering about the iPhone accessibility features and learn too the methods employed by the blind in using the iPhone.

More challenging times ahead!

VISION FOR THE NEW YEAR

Another year came to a close and it marked my 9th year crossing the bridge from the sighted to the world of darkness. A severe bacterial infection resulted in sudden loss of sight in both my eyes. As an adult blind, the emotional struggles in overcoming the  acquired disability was quite a traumatic ordeal and sad to add that there were little help or support available to me at that point of time. I was fortunate to have a loving and caring family. Together, my wife and children supported one another in facing the tough challenges, helping me to adapt to my new life.

Awareness is still very much lacking about the help and support for people stricken with blindness. Both state authorities and non governmental organisations surely need to transform to reach out to those people in need of help and support. For adult blind, customised rehabilitation programs are needed to suit individuals so that they are able to regain their independence, dignity and assimilate back into society without facing discrimination and social stigma. It is sad to note that today, those becoming blind are often assumed to be incapable and a burden. Today, very few are aware of the Disability Act and Malaysia being a signatory to the UN Convention on the Rights of persons with disabilities Act. Blind NGOs should be more aggressive in raising awareness to all for the betterment of the blind community, as the disabled groups are often been sidelined in areas of job opportunities, education and community development.

Accessibility  in public transportation, barrier free walkways, accessible information and disabled friendly amenities are still a dream for the local disabled community. This has created a barrier to the independence of the disabled and causing much inconvenience to the disabled and care givers. Over the past few years, I have participated in conferences and dialogues organised by relevant state authorities on accessibility issue. However, the feel good factor only stayed at the conferences. There's little follow up action in implementing the improvements proposed, not walking the talk so to speak. Examples can seen in the incorrect layout of tactiles installed, which pose a hazard to the blind. Often too, opinions are not seek from the blind before implementation of accessibility improvement projects.

Blind assistive technology devices and gadgets are out of reach to many blind. Computer screen reader softwares are expensive to purchase. Assistive technology for the blind is of utmost importance for the blind today. Many blind vouch that it’s their life saviour as the technology enabled the blind to be connected to the world and in some areas, the blind are able to compete on a level playing field, for example, online research and writing. Subsidies on purchases of such assistive technology tools should be given and waiver of the internet charges by the telcos so that more blind will be encouraged to pick up the important computer skill, thus  increasing their employment marketability. 

A strong voice for the blind and other disabled groups are needed to speak out for the rights and the needs of the blind and the other disabled groups. So far, we have not heard from the relevant authorities on its work on the improvement of quality of life for the disabled. The disabled community today need a dedicated government minister to look into the various issues and grouses to improve the quality of life of the disabled community, estimated to be 15% of our population. 

More challenging times ahead

Happy new year 2016!

Losing one's sight as an adult is unimaginable to many as the traumatic experience is devastating.  It leads to deep depression to both the affected and loved ones.  This happened to me 8 years ago. I contracted a severe bacterial infection which resulted in my sudden loss of sight in both my eyes, infected both lungs and liver.

Accepting my new life and letting go of the past, a mammoth task for my family and myself.  It proved to be  a real life challenge. The strong love and support from family gave me the courage and confidence to cross the bridge from the sighted world into the world of darkness.

I have to re-learn everything in life that we all have taken for granted, walking, eating/drinking, making coffee/tea, etc. Music, probably is the least priority in my life then. However, I am glad I was proven wrong. I realised it has therapeutic healing effects soon after I got myself a used acoustic guitar and recently, a ukulele. My re-introduction to computer with assistive screen technology certainly helped to reconnect myself with the world again. Emails, internet surfing, social media connectivity all became possible and you tube became my teacher in learning how to play the guitar.  I took up the challenge to learn to play the ukulele, that is, self taught. My first time playing a ukulele was when I played on my daughter's piece while visiting her in London.

It's not as easy and straightforward as I expected in learning from hours listening to the teacher on you tube.  With lots of patience and determination I managed to strum and learn finger picking. I am pleased with my achievement so far and more learning to come.

I'd learned, too, losing my sight is just losing one of my senses. more importantly, I have not lost my vision!

Happy New Year!

http://youtu.be/kYexxrG4_lY

More challenging times ahead!

Bridging Darkness with Hope

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.

'Introduction

Good 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.

Invitation

The first step into my world is to close your eyes and join me in my journey crossing this bridge.

The unexpected

Life 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 experience

Losing 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 direction

After 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 Challenges

I 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 Help

It 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 – rehabilitation

It 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 Life

In 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 blind

You 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.  

Story

Here 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 Hope

Losing 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. 

ABAS

With 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!

I Hear You.....

"I hear you, we, the the banks hear you, Mr Yam. There will be no discrimination against the blind by banks," declared loudly by the Association of Banks, Malaysia chief officer in the presence of many, Central Bank(BNM) officers, Welfare Ministry(JKM) officers, Banks representatives, National Disability Council(NCD) committee members and representatives from various disabled organisations at a dialogue held at BNM on Monday 31st March 2014. Dialogue was to discuss the challenges faced by the disabled with regards to banking and insurance.

It's certainly a feel good factor feeling to hear such words of commitment and passion but there's much yet to be seen, that is, action speaks louder than words and walk the talk to be the order of the day. It's has been a momental task over the past 2 long arduous years when I first contacted the local banks to highlight the plight of the blind for not being allowed to enjoy banking facilities which is every citizen's right and denying the blind to fulfil their banking rights and this bad practice is very much against basic human rights charter. Malaysia is a signatory to the UN Convention on Rights of Persons with Disabilities which clearly prohibits and will not condone any form of discrimination against persons with disabilities.

I am glad to contribution in some ways in removing the restrictions that the blind community is currently facing and more importantly, increase awareness to banks to adhere to banking best practices, i.e. allowing the blind an equal banking access to all financial facilities available.

More challenging times ahead!

Blind voting experience

Following is my recent voting experience as a 1^st time blind voter. I was not able to vote in the last general election(GE12) as I was still recuperating from a severe bacterial infection (January 2008) which resulted in losing my sight and also affected my liver and lungs then.

 

Both my wife, my son and I decided to cast our votes early in the morning. We arrived at the polling centre at 9.30am and there were already long queues stretching all the way from the Matang Pagar community hall to the main road, causing traffic to slow down. As we walked to the hall entrance, a SPR(election commission) official, came to us, having noticed my white cane, asked if I needed the use of a wheelchair and I said it was not necessary. We then showed him the printed copy of our voting details and enquired about the next steps. He was most helpful and directed both my wife and I to `jump queue’ to the beginning of `saluran 1’(stream1) where there was a long line of senior adults waiting patiently for their turn to fulfil their voting rights. We queued behind a couple of wheelchair bound person and an elderly lady. When our turn came, both my wife and I approached the desk, had our identity cards checked and my left index finger `painted’ with the much talked about indelible ink. A SPR lady then told me she could assist me to cast my vote as my wife was also casting hers. I politely told her that I am aware that I am allowed to bring along a person whom I trust and in my case, I trusted my wife, I said with a smile. So, I was told to wait for a few minutes for my wife to fulfil her voting responsibilities and she then guided me to the voting booth, showed and explained the ballot paper details and marked the choice of my candidate and guided me to drop the ballot papers into the respective boxes(Parliament and State).  We were then directed to another desk and my wife had to fill in a form (borang 10), a consent and helper form.

 

As we made our way out,  I met up with my son, still waiting in line (saluran3) under the hot blazing early morning sun, he informed that there was an earlier commotion where a senior adult shouted to the SPR officials that there should be another stream (saluran) for the disabled instead of allowing the disabled jumping queues which upset the complainant. However, the SPR officials kept their cool and tried to explain to the senior adult to have patience and understand the difficulties of the disabled. Perhaps, the senior adult should insist that the queue line be air conditioned just for him.

 

I look forward to the day where the blind will be able to cast their vote independently, without any helper assistance but only with assistive technology assistance in the voting booth.

 

More challenges ahead!

 

 

Goodbye 2012, Hello 2013

Another year closing…..

Another year is just about to come to a close. Like the so many people  around the world, it’s a time to relax, sit down comfortably, a time to reflect on the past year’s happenings and occurrences that had or could have impacted one’s life, predictions and resolutions that one had painfully thought of at the beginning of the year. Many have predicted the end of the world, 21^st December 2012 and well, I am glad I survived the doomsday prediction which did not happen, smiles..



A Walk in the Kota Damansara Community
Forest to celebrate International White Cane Day 2012
 -  organised by Adult Blind Association



January 2013 will be my 6^th year, since becoming a permanent member of the blind community. It’s likened to crossing the bridge from the sighted world to the fascinating dark world, not knowing what it has in store for me. I am really glad to have such a loving wife and my 3 kids who together, helped me to overcome the traumatising and devastating moments during those crucial months when I lost my sight due to a severe bacterial infection in early January 2008. Together as a family, we have not looked back but moved on positively ahead in life.      

 I  relearned my computer skills, regained my confidence and more importantly, became actively involved in advocating the blind community to speak out and stand up for their rights. As a result, I have taken up the challenging role as a volunteer chairperson of a blind computer users club, sit in a technical committee for facilities for the disabled and the elderly in a city council and speak at public events on issues affecting the blind community.

Golf competition in China - organised by
Hong Kong Blind Sport Association

Recognising the need to bridge the gaps and the missing links in helping the adult blind (newly blind adults), I have started a new organisation, Adult Blind Association of Selangor, to offer emotional support counselling, basic rehabilitation services and reaching out to those needing help, be it the adults who have  newly become blind or about to lose their sight.  The association will also offer help and support to the care givers

Another notable personal achievement which I am extremely happy is the official recognition and the registration of the first ever Malaysia Blind Golf Association. I must say that I did not even think that I could get back into this game of golf when I lost my sight back in 2008. Well, if there’s a will, there’s always a way

So, what will the new year 2013 bring forth? For me, I know I will be doing more advocating work and perhaps too, raising awareness on self advocacy to the blind community to start with, advocating for better access for all and last but not least, promote blind golf to the blind community and bring the game to the next level, that is, international level.     


 So Hello 2013....

More challenging times ahead!

International White Cane Day Celebration

SPEECH BY YAM TONG WOO, organising chairman, WHITE CANE DAY celebration at the Kota Damansara Community Forest Park, OCT 13, 2012

 

 

Selamat Pagi Yang Berhormat Ms.Elizabeth Wong(Exco Kerajaan Negri Selangor), Dr. Nasir(ADUN Kota Damansara), Mr. Anthony Thanasayan(Ahli Majlis Petaling Jaya), Mr. Jeffrey Phang(Chairman, Friends of Kota Damansara), kawan kawan yang buta dan penglihatan terhad, sukarelawan sukarelawan, ahli ahli dari media, tuan tuan dan puan puan.

 

Dengan ini, izinkan saya berchakap dalam Bahasa Inggeris.

 

Blind & Visually Impaired and young volunteers being
 briefed before entering the forest
 

Good morning every one. I cannot see but I am happy to hear so many voices today as we come together once again to celebrate World White Cane Day which falls on October 15^th each year. This day is celebrated all over the globe with activities to remind the sighted community that the white cane is synonymous with Blind and visually impaired people, in short BVIs, and promote their safety needs and celebrate their independence that can be achieved in spite of little or no vision.

 

Today, we are celebrating White Cane Day with a walk into the Kota Damansara Community Forest. This is the first time that many of us BVIs are tracking into this forest. It is definitely my first since I became blind 5 years ago. The walk give us the opportunity to be close to and enjoy mother-nature through touch, feel, smell and hear.

 

I would like to thank the Forestry Department who, so kindly, stationed their officers at strategic locations within the forest and patiently described the different species of trees, etc to the BVIs. I also would like to thank the Friends of Kota Damansara (FoKD) for being the location hosts today. We are also grateful that FoKD had the disabled community in mind as far back as 2007 when they build the ramps, the walkways, the canopy and even the toilet infrastructure. We are counting on you to implement your vision to create the first open access forest for all and we hope that MBPJ , forestry and the Selangor State government will extend the full cooperation to ensure that by the next celebration of World White Cane Day we will have tactile surface indicators, disabled friendly toilets with running water, and longer stretch of accessible walkways that will enable us to independently explore more of the forest.

 

I am also glad to know that many volunteers are here today to join in the celebration by walking alongside and learning how to guide the BVIs as they track through the forest. I hope all of you had a good time, especially the first timer volunteers. I am sure you will take home invaluable lessons on how the BVIs, given the opportunity, will try to live a life as independently as possible like everyone else with the help of the White Cane.

 

Let me share with you what the White Cane mean to me. I lost my sight 5 years ago, literally overnight. Walking without sight can be traumatic and a painful experience. My first present from a concerned friend was the White Cane. Since then I have never left home without it. It has become part of my life acting as my `eyes’. It gives me the confidence to move about independently and safely walking the line – the yellow tactile walking surface indicators on the pavements.

 

Listening attentively to the briefing by the Forestry officer
 

It is sad to note that many sighted people on the streets still do not know the significance of the White Cane. We hope by celebrating the White Cane Day, it will raise the public’s awareness of what the white cane symbolizes – independence and safety for the BVIs. So when you see a person walking with a White Cane, recognize the person is blind and cannot see you, so give way if you are walking and slow down or stop if you are driving.

 

Before I hand over the mike, I would like to take this opportunity to thank YB Elisabeth Wong for officiating this event, MBPJ for organising, sponsoring it and deploying their staff to ensure our safety and conveniences, Forestry Department and Friends of Kota Damansara for their support, the volunteers for spending their time with us, and last but not least give ourselves a pat on the shoulder for just being here today.

 

Thank you.

 

More challenging times ahead!..

 

Adult Blind Association of Selangor

Adult Blind Association, Selangor (ABA, Selangor)

 

Persatuan Orang Dewasa Buta dan Penglihatan Terhad Selangor (Adult Blind Association Selangor), a newly registered organization has been set up to focus on raising awareness about adults who are loosing their sight (Adult Blindness). the special needs in rehabilitation, emotional support and counseling to Adult Blind and their caregivers, and, more importantly, a support platform for Adult Blind and their care givers to come together to share and learn how to cope and manage the traumatizing acquired sight disability during adulthood years.  There are many causes of adult blindness and to name a few they are eg. glaucoma, retina pigmentosa, diabetes which are progressive.  There are cases where blindness came about suddenly like accidents, and like my case, infection.

 

Flashback, those agonizing and traumatizing, depressive moments when I could not see are still very fresh in my mind despite becoming blind almost 5 years ago, as a result of a severe bacterial infection.  I could still recall vividly, the difficulties that my family and I had to endure, `fight and crawl’ to rebuild our lives the hard way, so to speak. My wife, Hong, being a trained nurse, was the pillar of strength for the family during those testing times. We were almost devastated as we could not seek out such specialized counseling support services that could offer some degree of hope to both my wife, a care giver and myself, Adult Blind. As an Adult Blind today and living through it, I can attest that there are significant differences in rehabilitation needs for those who became blind in adulthood and for those who are born blind. `Crossing the bridge’ from a sighted world into the world of darkness is an experience which, I could describe in a few simple words, simply terrifying and probably the most scary moments in one’s life. I wished that there were more help and support services available then, which we could seek advice and guidance from.

 

Picking up the pieces and moving on with our new life, I have gotten to meet many adult blind friends who had similar stories to share.  Some of the stories were good but many were sad which brought tears to my eyes whenever I recalled those touching conversations I had with my adult blind friends and their family members. There is a real, urgent need to create awareness about this so called `acquired disability’ that could inflict any one of us at anytime at any time of our lives.  Disabilities such as becoming blind, becoming wheelchair bound, becoming hearing impaired are typical stories we read and hear almost daily, especially as age advances or one is struck with diseases that leads to disability e.g. diabetes.                     

 

As an active volunteer for the past couple of years, reaching out to the blind community, I have receive many requests from strangers seeking help and guidance in coping with adult blindness as a result of eye diseases, genetic, age related and accidents which can be most depressing and worse still, causing the family to break up. These are real possibility of occurrences today and tomorrow. Our society needs to be reminded, and to be  made aware about the need to provide the support services to offer the much needed help when needed at the crucial moments in one’s lives.

 

Adult Blind Association is set up with the aim to fill in the gaps which is currently lacking when a person loses his sight e.g. support and counseling for both the affected adults and their care givers who need to know how to cope and manage their love ones during the initial difficult period, provide immediate basic rehabilitation in terms of orientation and mobility within and around their own homes, the daily independent living skills to regain their confidence. 

 

Sad to say, in our society, the social and cultural stigma forces the newly blind adults to be confined to his/her own home.  There is an urgent need to reach out to these Adult Blinds to offer them hope and regain confidence to continue to live a fruitful life.  We hope to set up support groups, reach out to these people via the medical professionals, and through awareness initiatives. 

 

Adult Blind Association, Selangor need your support, financially or otherwise, to carry out programs such as home visits to the newly adult blinds, to provide them with tools - basic assistive and adaptive devices/gadgets to improve their independence in the daily living needs, and skills training e.g. basic orientation and mobility, technological training to equip them to become computer literate with the use of screen readers.

 

The end in mind is to enable a newly adult blind to accept and come to terms with his blindness and to be able to live as independently as possible with regained confidence, and for the caregivers to be armed with the knowledge to support and help their loved ones. 

 

If you can help in any way, or need more information, please contact mobile +6012 3053853 or email yamtw05@gmail.com

 

More challenging times ahead!..

         

 

 

Adios Dear Friend

Adios Dear Friend

When I became blind I was fortunate to meet a few friends and became close with them over the short span of 4 years. It was from them that I managed to quickly grasp the basic rehabilitation skills, such as orientation and mobility, basic Braille reading skills and not forgetting hanging out at nearby coffee shops for tea breaks. One of them, Mr. Chan Chen, Francis, age 64, who loved `kopi oh kau’, extra strong black coffee, often send me motivational and inspirational text messages and we often too, engaged in intellectual discussion pertaining to life, health, social and even current political issues. I am sad as all this will be a thing of the past. Francis, left us on Aug 6. His sudden demise really shocked me and all the other local Brickfields blind folks who knew him.

Francis, who was blind for most of his life, did not let blindness hinder his passion to help others, particularly, helping the adult blind. It’s due to his unselfish caring attitude that guided and led both my wife and I to be actively involved in helping the blind community, to improve their lives, offer emotional counseling and helping the adult blind individuals and care givers to learn to accept and adapt to the new blind world. Francis would often travel to other towns to visit blind individuals and spend time talking to those needed help and offer counseling in overcoming blind issue problems, etc. Now and then, he would introduce blind friends to me. It’s from such interactions that helped in my rehabilitation within a short period of time. He would share and discuss `case studies’ with me and together, we would devise strategies to help, at times, depressed adults, about to go blind due to eye diseases and other health problems that could cause blindness.

I could vividly recall the early days when we first met. Francis was a character, full of jokes and would keep us all in laughter, always reminding all that yesterday is history, tomorrow is anyone’s guess and today is now and what we make of it. One of his memorable classic tales about his early days, after relocating from Johore to KL for employment was this : he could not speak Cantonese and spoke only Hokkien. One day while ordering coca cola, he asked for a little salt to go with his Coca Cola. As he held up the glass of coke and asked the coffee shop owner for some salt, he said `yiam’ (salt in hokkien) and in response, the shop owner said “yam” (drink in cantonese). Francis repeated the same word a couple of times and this got the coffee shop owner agitated and scolded Francis, saying that Francis‘s probably is crazy for repeating the `yiam’ so many times. A kind and amused next table customer interpreted the dialogue and told the shop owner that Francis was actually asking for salt in Hokkien. The shop owner realized his mistake and quickly apologized to Francis and all burst out laughing. The lesson got Francis to pick up the Cantonese dialect and I am most amazed to find out Francis was gifted where languages and dialects were concerned. He was indeed multi lingual. He could speak Tamil, English, Mandarin and some Japanese . He could converse in Hainanese, Hakka, Cantonese and Hokkien dialects. His could put on accents from Scotland, Ireland, Cockney when speaking English. He told me he picked up this talent of mimicking from listening to the BBC World service and other short wave radio stations

Th other noble service which many blind folks would dearly miss is his hand brailled annual calendars. He had, over the years, personally hand brailled the 12 months calendar in Braille and he took pains to include the important dates for the blind, such as, school term breaks, religious festivals, and state holidays. He had insisted that I accept his annual brailled calendar though I told him that my Braille skills’s still very basic. The braille calendar will be a memory of Francis that will stay with me for a long time. I would not have the opportunity to learn Braille from him, an understanding that we had earlier on, that was, I coached him in learning the basic computer skills and he would coached me in Braille. I am glad that he did pick up some computer skills and he was able to read some e-books and operate his laptop to play his favourite CDs and DBDs.

Upon his retirement from the Malaysian Association for the Blind, some years back, other than the voluntary outreach activities, he was also a part time massage therapist and could assess and advice his customers about their health condition from his touch during a therapeutic massage session, another of his talents .

Francis had very vivid imagination and memory and I could rememember him telling me about his travels to Australia and Vietnam. He could describe in detail the places he had visited and seen, including an unforgettable scene, standing on the ridge of a cliff in Hanoi and looking out to Hainan Island, China, across the seas.

On a holiday to Australia, upon arrival at the immigration counter, an Australian immigration officer asked him, `You come to Australia `to die’(today) and he said, “No, I come here for a holiday” that’s Francis for you.

There were more than 50 blind friends who turned up for his funeral service at the Holy Rosary church, Brickfields and many of the blind friends walked to the church on the morning, braving the heavy morning rush hour traffic, risking their lives in crossing a couple of busy road junctions, just to be there in time to bid farewell to Francis and offer condolences to his wife, Cecilia and his only daughter, Patricia.

Farewell, my friend, Francis.

More challenging times ahead!

Inaccessible Hotel in a Liveable City

PJ, the city of choice Conference:

It’s truly heartening to listen to 2 renowned International experts talking about the importance of engagement, involvement and participation of all sectors of community, working together to realize a shared vision of a livable city for all. Yes, the message was clear, that is, the disabled community should be included and be actively participating. What a timely reminder to the local audience in the conference room. I knew then, I was in the right place and with the right people ie., town planners, architects, Residents Associations representatives, Local council members, NGOs and other state agency officers. I had to admit that I was initially hesitant to attend and thought I would probably just attend the first day and skip the next day. However, the conference was enthralling, so to speak, and I am happy that I marked a full attendance for the duration.

The conference was held at a newly completed hotel that offered modern conference amenities and facilities. The hotel design architects, however, had not given a thought that the disabled, being part of the community, also do attend conferences or as hotel guests. Both my wife and I were disappointed to discover the lift was not talking! No tactile to guide the blind and no hazard/warning tiles at strategic and possible hazard areas. It was simply unimaginable and unacceptable in a newly completed hotel that’s supposedly to welcome all hotel guests, both home and abroad. Another shocking irresponsible action by the cleaning staff was, converting the toilet for the disabled into a storeroom for their cleaning equipment and tools. Social attributes and attitudes were clearly lacking despite the grandeur settings of a nice looking hotel.

During the morning tea break, I had to join the long line of queue and also noticed that my wheelchair bound friends were also having difficulty in getting refreshments. My wife had to seek the cooperation of the hungry crowd to kindly make way for the disabled and informed the hotel service staff to organize an area for the disabled to enjoy the tea break. It was a similar experience during the buffet lunch break, where the blind had to rely on my wife to bring the food to them as there were no prior arrangements made to offer assistance. However, the service staffs were quick to assist the blind when informed about the needs. It was a great positive change and feeling on the next day. There were no issues to inconveniences, and the service staffs, including the conference organizers, were most helpful, be it at teatime, workshop session participation, and not forgetting the sumptuous lunch. Also, it’s nice that other conference participants interacted with the disabled at meal times to share their viewpoints. I know for a fact that from now onwards, the disabled guests coming to this hotel will certainly be warmly greeted and accorded good and caring service by the hotel service staff.

More challenging times ahead!

DEAFBLIND - A LESSER KNOWN GROUP

Looking back, I considered myself fortunate that I was able to tap on my inner strength, and coupled with family support and love I was able to overcome and accept my sudden loss of sight as a result of severe bacterial infection in January 2008. This life changing experience widened my scope of vision in seeing the good, bad and the ugly sides of life. Fortunately, there’s more of the good. I am happy to have befriended many new friends, including wheel-chaired bound, blind and visually impaired and the very much lesser known group, the Deaf-Blind!        

I was quick to realize the importance of assistive ICT which helped me move forward in my new life’s journey following the traumatic experience. I had to re-learn using the computer with the screen reader technology, enabling the text to speech functions, thus, giving access to the blind to use the computer. I started an internet chat list for the blind to come together in the chat room, share and exchange experiences, etc. It was, indeed enlightening that I got to know a few Deaf-Blind friends from the list. I was moved to learn about the life’s challenges brought on by their additional disability; deafness on top of blindness.

Choo Kim Yoon, 44, blind, started his primary education at the Princess Elizabeth School, Johor Bahru. “I live at Salak South New Village in Kuala Lumpur with my mother and brothers. I lost my eyesight at the age of 3 due to high fever. I became partially deaf at the age of 16 due to unknown illness “ Choo said. Despite the deteriorating hearing impairment and through sheer determination, he completed his Form 6 education at the St. Johns Institution, Kuala Lumpur. He continued on and did a stint at the Gurney Training Centre, Malaysian Association for the Blind where he learned Braille, computer skills and obtained a certificate in stenography. Choo said “My current occupation: slotting appeal letters into envelopes, raising funds for MAB.”

Choo lamented “living with multiple disabilities is really tough and challenging. Unable to see and hear properly make communication with other people the foremost problem. People are not always willing to talk with you if you cannot hear them the first time. They don't always have the patience to repeat things to you, instead they will keep raising their voices and shout to you. When people behave in such a manner, it cut off every possibility to establish a friendly conversation with a deaf-blind person like me”. As a result of this negative attitude amongst the people in the society, the deaf-blind community are regretfully neglected and shut out of so many precious benefits which the other parties enjoy, including many potential employment opportunities. “I am thankful to God though because not everybody exercises such a mistreatment against a deaf-blind person like me. There are still open-minded people in the society who are willing to befriend and help me in every possible way. For instance, my close friend at work, learned to communicate with me by the means of finger-brailing. He assisted me in my job and also helped to buy my lunch as well as other materials such as batteries for my hearing aids.”

“NGOS serving the blind, and the government should work hand in hand to create awareness amongst the public of the specific needs of the deaf-blind community. Our specific needs should be recognized and attended to accordingly. There should not be barriers to prevent us, the deaf-blind persons, from participating and contributing actively in all programs that is aimed toward enhancing the quality of life. We must work together to break the communication barrier by implementing a standard sign language that is acceptable and accessible for both parties. One of the potential methods can be the Lorm tactile sign language which is widely used in developed countries and has recently been converted into computerized format. The govt. should provide financial assistance to the deaf-blind individuals who need to purchase such high-tech communication device. At the same time, the govt. must supply high quality hearing aids to the deaf-blind persons and not merely the low-cost ones. In addition, the govt. must realize the importance of computer access to the deaf-blind community, hence must supply subsidised or free Braille display devices to the deaf-blind persons that will enable us to venture into internet business or become creative freelance writer. In short, we, the deaf-blind persons should not be excluded from the fast development in technological access in this country.” Choo’s parting shot, “help us to become fisher men and not merely eater of fish supplied by other men.”

Louis Prem Kumar, 48, has this to say.  “I am a blind masseuse working in Shah Alam, Selangor and also a musician. I realized my hearing started to slowly fade away at 9 years of age.  Then at age ten I started using hearing-aids. About my blindness, the early symptoms of blindness began at age 7 but I continued studies at a sighted school till 14 and had to take up Braille due to vision loss, unable to read print.” Louis completed his Form 5 secondary education at the St.Johns Institution, Kuala Lumpur. He furthered his skills training at the Gurney Training Centre, MAB for one and half years.

Louis said, “My daily challenges: due to my poor hearing, I find it difficult to communicate with people in noisy environments such as busy roads, and big gatherings.  It also drowns my confidence in crossing roads on my own.  Being deaf-blind also kept many people away from knowing me because I could not hear and communicate with them easily. My current employment is as a masseuse. Some clients do not want to take the chances to try my therapy.  They will try after much persuasion and only after they know I am a sociable and friendly person.  It is difficult to go shopping and doing banking on my own due to my additional disability.”

 Louis’ wish list, “Well I feel that the NGO and GOVT could assist us with providing financial aids to enable us to purchase the high tech hearing aids to assist the hard of hearing blind individuals. In cases where hearing loss is extreme, they could assist us with supplying technology such as Braille displays or Braille style computers. The NGO and GOVT could also employ the Deaf-Blind in handwork jobs that does not need much of communication such as packing jobs or even serve at blind societies where Braille is a means of communication among the blinds concerned. The public could also come forward to help the deaf blind in crossing roads, getting into the LRT, Monorail trains and the Commuter trains.”

 More challenging times ahead!

COPING WITH BLINDNESS

Q&A :  A session with a curious teenager:

Question:  Do you listen to the beeping traffic light before you cross the road? Or do you use white canes (mostly) ?

My reply: The white cane acts as `my eyes' whenever I travel out of my house. Yes, the beeping audible sound from the traffic lights helps me in deciding when to cross the road but I still have to rely on my hearing to make sure that there is no oncoming traffic, motorbikes, etc. However, many traffic lights here are not fitted with the audible sound systems and also, there are some faulty ones and not being repaired.

Question:  Do you have an assistance dog (meaning a guide dog)?

My reply: To date, there is no guide dog for the blind here in Malaysia. I am exploring the possibility of forming a guide dog society and hope to introduce guide dogs for the blind in the coming months. I have 3 companion (pet) dogs at home, Joyful, Lady and Prosperous.

Question:  Do you know if Malaysia has `braille tiles' on the foot path?

My reply: You mean tactile guiding blocks.  There are tactile guiding blocks, mainly in KL city areas, in and around transportation hubs, etc. More tactiles are being installed, particularly in public facilities and amenities as the authorities are fast becoming aware about the needs of the blind community.

Question:  How do you feel about people who can see while you can't?

My reply: Have not thought about it. As you will soon learn, all people are only interested in themselves, so, probably, that's why I am concerned only about my self when I am out in the open, making sure I am listening to the sounds and noises

Question:  Do you feel sad? Or grateful because you can feel improvement in your other senses?

My reply:  Sad?.. no, because now, I do not pre-judge a person by one's looks, clothing worn, etc, that is, not judging a book by it's cover. Yes, my other senses do get enhanced over time and this amazes me as I can `filter out' unwanted noise during conversation, enjoy the good food taste and listening to good music.

Question:  Do you feel special now that you are sightless?What does your friends and family think about your blindness?

My reply: My family are happy and proud that I am able to pick myself up within a short period of time, adapt to a new world and life. More importantly, my family got closer, realising the need to be supportive of each other in terms of emotional and love in times of need.

Question:  Do they help you in daily life?

My reply: As said, family's emotional support and love plays a crucial role in my adapting to my new life despite being a new learning experience for all.

Question:  What is the most difficult thing to do when you cannot see a single thing? Do you remember steps in your house? (like : four steps from the living room is to the toilet.. ) Or do you use other blind tools? Please tell me the tools you use in daily life.

My reply: Initially, I have to relearn everything in life and insisted in doing things/chores on my own so, counting the steps helped. Fortunately, we human beings, do have the built-in survival instinct and inner strength. My memory improved and I could remember the landmarks when moving about in the house or outside. The white cane is the most important tool aid used. There are several home gadgets which are available but I don't use them, for example, liquid leveller which enable me to know when the cup is full when I pour water into the cup. Another gadget is a electronic labeller which, enables me to `audio label' any things that I'd like to remember, such as title of DVDs, medicine bottles/packs, etc.

Question:  What is your first impression when you heard the doctor or someone say that you are blind? What is the first thing that rushed through your mind? Did you create barriers during the first few days of sightless eyes?

My reply: Never thought it would be permanent then.  However, when the doctors mentioned the sight loss was irreversible, it was the darkest moment in my life and my thoughts were on my family and how they felt, probably, worse off than me. I was in pain for sometime, physical pain in my eyes and emotionally very down, just like falling into a bottomless pit.   

Question:  And the most curious thing I would like to ask you is: How do you see this email? Someone read it for you? What are you using to read this email?

My reply: I am using the assistive technology, screen reader called JAWS. This allows the text to be converted into speech, thus, reading out loud whatever I select the line or words to be read or type. Technology has revolutionise the lives of many, including the blind. Many blind people uses mobile phones with talking softwares installed and are also computer literate. I use the iPhone which has its built-in voice over screen reader. For computing, I am now switching over to Apple Mac from the common Windows used by the many blind and all other sighted people.     

More challenging times ahead!

ATTITUDE OR INDIFFERENCE?

Admittedly, losing my sight in year 2008, due to a severe bacterial infection, it has been a life changing event, having to relearn practically everything for example, simple things like walking, eating and drinking, which comes a second nature to all. However, I noticed that I have become more observant to the surroundings and the happenings around me. Blindness has not stopped me from traveling and visiting places of interests, local or abroad.

Recently, on a trip flying out to the UK, at our Malaysian airport, people in general or the airport officials, as always, turn a blind eye to offer any assistance to us, my wife Hong and myself. My wife has to push the trolley luggage, and guiding me through the airport and queuing in line to check in and at the immigration. Many a times, I do wonder if it is sheer ignorance or just not having any caring attitude that stop people from coming forward to ask if we needed help. I need to be cautious all the time, not to push the baggage trolley into the waiting passenger in the queue in front of us while moving forward towards the counters. It is always a relief to finally be seated in the plane.

Arriving at the destination, London Heathrow airport, it's a total different experience despite the airport being a very busy airport. The airport staff would quickly approach both my wife and I to enquire if we require assistance and would guide us to the fast track priority lane to clear immigration, etc and even enquire if we need further assistance to retrieve baggage from the carousel.

As a member of the MBPJ OKU Technical committee for the past couple of years, I have been involved in many access audit of accessible facilities for the disabled. Checking out the accessible toilet for the disabled at Heathrow airport, it brings back fresh memories about the similar toilets back home in KLIA airport, the frustrating moments where the doors of the toilets were difficult to close and open.. I had to lift and my wife had to pushed/pulled the door to escape from the cubicle. I do wonder how the individual disabled person, alone, get out from the toilet. He/she would be stuck inside the toilet!

Traveling around London with the underground tubes during peak hours could be a challenge for the disabled but to me, it was quiet easy. Service staff was always around and did not hesitate to approach us to enquire if we needed assistance to get on to the train platforms. People were all over the station, rushing in and out, just alike any other cities around. The caring attitude of the passengers on the train did touch me in many ways. People quickly got up and offering seats to me and even for my wife. Along the train journey, it did occur to me to question why such attitudes are lacking in our own society back at home, civic and moral education shortfalls?

It was heartening to note the elderly and disabled did not stay at home. They traveled on buses and trains, going shopping and moving around, unlike our disabled in Malaysia. Their public transportation are accessible and on time! The curb level and bus floor are almost of the same level, so much so I did not realized I was on the bus until my wife informed me. There are always seats allocated for the people with special needs and there is a space for parking wheel chairs and strollers. Our local public transportation has much to learn and catch up. Just imagine a blind person waiting for a bus, and not knowing whether the bus is turning up or not!

Whilst the local authorities are aggressively pushing for better access facilities for the disabled community, especially in public areas, amenities and transportation, this is certainly laudable but little has been done to educate and raise awareness to the public about the social attributes which are equally important, if not, more necessary in understanding the needs of the disabled community.

I had the opportunity to travel on budget airlines to Glasgow and Dublin. I was happy to note that special attention were given to people needing assistance e.g. in wheelchair, the elderly and like me, the Blind. We were always given priority to board and wheel chair bound passengers boarding the plane using ambulift.. There was no additional fees impose for special assistance.

On the return journey home, while queuing at the check in counter I was surprised to hear a fellow Malaysian airline staff on duty at the Heathrow airport enquiring if I needed any special assistance. Again it was a breeze through the immigration and custom lanes via the fast track lanes for special people like me.

On board the plane, both my wife and I were taken aback by the warm and caring attitude of the cabin crew too. This was in contrast to the outward bound trip from KL to London. I had almost forgotten the 'turning the blind eye to the blind’ which we experienced traveling from KL to London. I could recall vividly, there was unexpected air turbulence while I was in the plane’s toilet and an announcement was made to return to seats and fasten the seat belts. I quickly exited from the toilet to find a friendly voice calmly telling me that he would guide me back to my seat. The air steward has gotten my wife to return to her seat and he waited for me despite the doing a rock n roll due the air turbulence experienced. Kudos to the crew of MH 3 for their caring attitude.

Puzzling till now, is there a different SOPs practiced by our airline, that is, indifference to the disabled persons traveling out from home shores and disabled persons traveling home from abroad. Perhaps, our airline staff need to adhere to the guidelines enforced by the UK authorities, for example.

On a happy note, I was pleasantly surprised to find out there is now a special immigration counter for the elderly and the disabled at the KLIA arrival hall and thus, a step forward in making life for the elderly and disabled more convenient after long hours on the airplanes.

Still, there is still no improvements in the doors of the toilets for the disabled at the KLIA arrival hall.

More challenging times ahead!