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!

WESAK DAY

Wesak day, an important day in the Buddhist calendar, marking the birth, enlightenment and death of Lord Buddha. Buddhist devotees, throughout the country, young and old and from all walks of life, would throng the hundreds of Buddhist temples located in the country to honour and pay their respect in commemoration of this significant event.

 

My sudden loss of sight in January 2008 as a result of a severe bacterial infection had not deterred me from joining the thousands of Buddhist devotees all over the world, coming together on the day to celebrate wesak day. Both my wife, Hong and I, made it a point not to miss attending this annual historical event. However, for some strange reasons, we have been visiting a different temple over the past 4 years on wesak day and, coincidently, 4 years since losing my sight.

This year, we visited a temple located in Petaling Jaya and partly, as invited guests to an event to commemorate the day, representing the National Council for the Blind, Malaysia. We arrived at the temple at about 9.00am, the temple and its vicinity were already abuzz with people and vehicles. Patience reigned the day, despite the heavy traffic congestion, there were no horn blaring and many volunteers were around to direct the vehicles to the designated parking slots. It was quite a long walk for both my wife and I. we had to walk past the special approved makeshift stalls alongside the road to the temple building. Surprisingly, I did not experience people knocking or bumping into me as we squeezed our way through the large enthusiastic crowds and my white cane leading the way. This is a far cry away from the common bad experiences ,in shopping complexes and malls, people “love” to bumped into me despite my white cane in full view and worse still, no words of apology was offered nor attempts made to retrieve my fallen white cane at times following the “knocks.” There were many helpful volunteers strategically placed to assist the devotees and I truly felt like a real VIP (very important person) and not a VIP (visually impaired person) during my time at the temple. I wish more persons with disabilities would be able to experience and share the joy in attending such events. Everyone, irrespective of age, gender and creed, truly display care and compassion on the day and so much so that I wish everyday will be a wesak day for the persons with disabilities. Persons with disabilities should be encouraged to join in the day’s celebrations, a good opportunity in getting the persons with disabilities to assimilate into mainstream society, an important proactive action, that is very much lacking in our society and is badly needed. I have attended earlier specially designed functions where persons with disabilities are gathered together and feted with delicious food and given goodies to bring home and this event would be held, not on the event day, but on a different day, an exclusive event, so to speak. The experience of the actual celebration would be clearly missing and missed. Moreover, there will be no shortage of volunteers to help out if the persons with disabilities are encouraged to be engaged on the day, a day of celebration for all.

 

On accessibility, there is still much room for improvement and as I walked up the steps into the temple, I asked my wife if she noticed any accessible facilities such as ramps and hand rails for the elderly, etc . “None that I could see” she said. Well, I know that there are no tactile pathways for the blind to access the temple independently. I hope the relevant temple authorities would look into the accessible needs and plight of the persons with disabilities, build and construct acccess facilities at strategic locations, thus, enabling the persons with disabilities to enter the temple premise proper to fulfill their religious rights just like all others. I do find the experience of peace, silence and self awareness simply exhilarating, Not forgetting the delicious vegetarian food served and myself sitting and eating lunch together with the devotees and guests. Perhaps, you might think I felt good to be the only blind guest at the vent, well, I really wished more persons with disabilities, blind, wheelchair bound, for example, should be invited and encouraged to attend and share the joyous experience on the historical day itself and not on other days which would not have the unique essence or magic of the day.

More challenging times ahead!