Twelve hours from now, I will be at Sentral catching the KLIA Express to KLIA. I have yet to pack unlike the trip to Tokyo where my luggage was ready and zipped up one week in advance. There is no sense of urgency this time. The two weeks in Tokyo had worn me out somewhat. I am still recovering but that is not the reason for my complacency.

It is always difficult to bid farewell to Wuan, what more for a journey that is going to take me away from Malaysia again. The two trainings that I am attending will last almost three weeks. That is three weeks too long to be away from Wuan. That is three weeks away from the comfort zone that I have surrounded myself with in Kuala Lumpur. That is three weeks too long in a foreign land. The fear of the unknown is definitely one of the worrying factors at the moment.

As usual, food will be a major concern. Going to new places is always a learning experience in proper dietary management. I have to be prepared for the unexpected as ingredients and cooking methods are all different. As a person living with disabilities, an extended stay in a foreign place will always come with a host of challenges. It will take a few days for me to adapt to the layout of the room and the way I manage my bathing and toileting needs. I survived two weeks of wintry Tokyo. I hope I can survive another three in Bangkok.

Nevertheless, the two trainings will provide me with sufficient knowledge and skills to implement Independent Living projects in Penang and Kuala Lumpur. Together with my peers in both places, I hope to build a better future for ourselves. We are living in a grossly imperfect world. It is high time we change things, not only for people with disabilities, but for all with similar needs as ours.

I just witnessed Kimberly blow her diet to smithereens on a succulent burger Cajun chicken sandwich while I only had greens and unsalted fries. Life is so unfair!

A deserted corridor to the Oedo Subway in Shinjuku.

Independent Living is a philosophy and a movement of people with disabilities who work for self-determination, equal opportunities and self-respect.

Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation.

Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our neighbors, work in jobs that are in line with our education and interests, and start families of our own.

Since we are the best experts on our needs, we need to show the solutions we want, need to be in charge of our lives, think and speak for ourselves - just as everybody else.

To this end we must support and learn from each other, organize ourselves and work for political changes that lead to the legal protection of our human and civil rights.

We are profoundly ordinary people sharing the same need to feel included, recognized and loved.

As long as we regard our disabilities as tragedies, we will be pitied.
As long as we feel ashamed of who we are, our lives will be regarded as useless.
As long as we remain silent, we will be told by others what to do.

Adolf Ratzka, 2005

Source: Independent Living Institute

As participants of the Training of Managerial Personnel of Independent Living Centers (ILC) and Peer-Counselors for People with Disabilities organised by the Asia-Pacific Development Centre on Disability (APCD) in Bangkok, we are required to submit a Pre-Training Report on disability in the area we are working in. I will be working closely with my peers in Penang and Kuala Lumpur on this project but Penang will be my main focus. Apart from Malaysia, participants were also invited from Pakistan and the Philippines.

Five Independent Living Leaders from Malaysia will be attending the Independent Living Centres (ILC) Course from February 28 to March 7. Two of us will stay back to continue with Peer Counselor Course from March 9 to March 17. I am one of the two selected to attend both courses. During my training in Japan in January, I have learnt the basics of managing an ILC. I have also attended several basic Peer Counseling sessions in September last year at the Independent Living Workshop and further training again in Japan. One needs to undergo one Basic Training Course and a compulsory 40-hour Training Course to become a certified Peer Counselor.

Below is part of the Pre-Training Report that I submitted:

PRE-TRAINING REPORT
TRAINING OF MANAGERIAL PERSONNEL OF INDEPENDENT LIVING CENTERS (ILC)
AND PEER-COUNSELORS FOR PEOPLE WITH DISABILITIES
ASIA-PACIFIC DEVELOPMENT CENTER ON DISABILITY
FEBRUARY 28 – MARCH 17 2006.

Penang State consists of the Penang Island and Seberang Perai. Penang Island is divided into two districts – Timur Laut and Barat Daya. My main area of focus in introducing Independent Living Programme is in the state capital of Georgetown and its suburbs which is located in the Timur Laut District. The state of Penang has an estimated population of 1,468,800. The Timur Laut District has an estimated population of 483,000 as of end 2005.

The statistics from the Department of Social Welfare Malaysia in 2003 stated that there were 8,165 persons with disabilities registered with the department in Penang. As registration is not compulsory, the figures could be much higher. The estimated population in Penang in 2003 was 1,416,900 and the population in the Timur Laut District was 469,400.

With no accurate data, the factor of 1% had been used by various sources including local authorities to estimate the number of disabled persons. That would put the estimated figure of disabled persons in the Timur Laut District at 4,830 in the year ending 2005.

The problems faced by people with disabilities in Penang include but not limited to education, accessibility, transport, job opportunities and a proper support system. A majority of mainstream schools for formal education lack accessibility for wheelchair users and students with mobility problems. Laboratories and libraries are often located in upper floors and are out of reach for them. The deaf, visually impaired, intellectually impaired and those with cerebral palsy are placed in special schools. This form of segregation prohibits this group of people from interacting and integrating with the larger society in their formative years.

The state government has recognised that accessibility is important for people with disabilities. Parts of the Inner City, banking district and Upper Penang Road was renovated and refurbished. The accessible features include walkways with guide strips and kerb ramps, accessible parking spaces and pedestrian crossings. This is only a small area of the Timur Laut District. A large portion of the suburbs are still not accessible.

Likewise, access into buildings are still lacking. Ramps are not properly constructed. Control panels in most elevators are not fitted at a suitable level for wheelchair users, and lacked Braille. Digital floor announcer is very rarely installed in elevators to aid the visually impaired. Accessible toilets are not built to specifications. Many of these toilets are not functioning due to vandalism and poor maintenance.

There is no accessible public transport in the whole of the Penang state. Wheelchair users have to depend on alternative modes of transport such as taxis and assistance from family and friends. Taxis are expensive and most times do not follow the rates set by the authorities. Additionally, many taxis refuse to pick up wheelchair users.

Some multinationals and local companies are employing people with disabilities. Again, there is no reliable data to ascertain accurately the numbers of gainfully employed disabled persons in Penang. The barriers to employment for people with disabilities are lack of qualifications and skills, a non-barrier free environment and non-accessible public transportation, among others. This is a cascading effect and a cycle of the problems stemming from the lack of formal educational opportunities and a non-accessible public transport system.

The support system for people with disabilities in Penang, and for that matter, in Malaysia, is still very much centred on the medical model of rehabilitation and welfare-based. The onus of looking after the newly disabled person after being discharged from hospitals at most times fell on the family, failing which they were sent to institutions or nursing homes.

Singing the school anthem.

When ex-classmates get together, you can be sure that some dirty linen will be aired. That was exactly what happened yesterday evening when thirteen of us got together for a reunion at Sunway Damansara with our spouses and children. William and Belinda, the gracious hosts, opened up their house to us for some merry making.

Laughing over bell bottoms and full heads of hair.

I have not met some of them since leaving school after Form Five. Nevertheless, this bunch is still as crazy as ever. There was more food than we could stuff ourselves with. The fun began when the wine and whiskey started flowing. Old discoloured photographs from the last century brought back some good memories. For a while, we were like little kids again, reliving the mischief of a time when all of us still had hair on our heads and waistlines we can only dream of now.

Recollecting the good old days at St. Xaviers Institution.

The two paragraphs above were written just before dinner. When I reread them again, now with a full stomach, they seemed very muted. I did have a lot of fun last night. The last time I laughed so hard at Beng Teik’s silly jokes was in November. This guy should have been a stand-up comedian. That talent was already bubbling during school days.

The guys of 1966.

Paul, the butt of many jokes, forgive the pun, took it all in good stride. When someone asked Paul what his choice would be between having a full head of hair or a waistline from school days. This smart guy, or so he convinced us, chose hair. His reasoning was that you can trim down a paunch but you cannot grow back hair that is no longer there. Clever huh! It will be interesting to hear Siva’s answer. Mikal, did you ask that question?

The girls - please do not ask what year.

There was Kirk the Fist Swallower. No kidding. We have witnessed him putting his entire fist into his mouth many times. Incredible. Nick and Sitham were implicated in some perverted acts. Those two rascals. The ever affable Tze Meng shared with us on how much food we should each contribute for a potluck – almost workable. Tze Meng also requested that I add more hair to his head when I post the images. If only my Photoshop skills are that good, I will my dear friend.

The kids.

I spoke to Thomas for the first time ever. It is a wonder that we have never chatted before in school. Keat Choong, who drove Wuan and me there, suddenly made me the designated driver when he befriended Jack Daniels. And I did not get to taste Henry’s keh liao jelly. Next time I will make sure I get a bite. William and Belinda were all over the place making sure we were comfortable although he had to bear the pain of seeing Manchester United lose to Liverpool. I am not going to make a roll call of the spouses here. I may get their names wrong.

Group photo.

Thank you guys and gals for a very interesting and memorable evening. Lets make this a frequent affair. Here is to St. Xaviers Institution, to Xavierians, to Lasallians and to great friendships. Labor omnia vincit.