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.

The last morning in Tokyo. Anticipation and reluctance gripped my heart. The sky was overcast. I wore only a collared tee but did not feel cold. The temperature was hovering around 7°C – the warmest of the days we were here. I had stayed in the Hino Experience Room for two weeks. It was difficult to imagine that I was leaving. It had become a cosy retreat and an abode that I always looked forward to get back to after a full day of lectures at Hachioji.

The journey from Hino to Narita International Airport took one hour fifty minutes. That was twice as long as from Kuala Lumpur city centre to KLIA. We passed some familiar sights like the Tokyo Tower, Tokyo Disneyland and a big Carrefour sign. For a moment, I wondered if I was back in Malaysia already.

Two JICA Officers were waiting for us outside the airport to assist us when we arrived. One interesting aspect about Japan Airlines is that they have a separate check-in counter for people with disabilities and families. The beautiful thing about this is that the counter staff are familiar with handling wheelchair-using passengers. We did not have to carry our luggage and queue to check-in.

The flight was delayed by thirty minutes. It began to rain just before we boarded. Passengers were not allowed to use electronic devices when the plane is at the tarmac, during take of and landing. I managed to take a few shots before the cabin crew advised me about the prohibition.

One hour thirty minutes into the flight, lunch was served. The low-protein no salt added meal was not exactly delicious but the presentation more than made up for its lack of taste. Clever use of ingredients with different colours made the food seem tastier than it actually was. That banana, one of the two fruits that I had everyday in Tokyo, costs around RM2.50 each in the supermarkets. I usually eat two daily. The other fruit that I normally have for lunch are apples.

I do not usually drink more than two cups of anything at one go. This is to control the amount of my fluid intake to ensure that I do not need to use the toilet too often. One of the cabin crew served Yuzu, which she called Japanese lemon, and I kept asking for refills.

Sunset from 10km above sea level was an incredible sight. The sun began to set while the plane was over the South China Sea. Despite the failing lights, I was surprised to be able to see the turquoise outline of some small islands when I looked down. As the plane slowly headed for KLIA, I began to get anxious. I was looking forward to see Wuan again. Two weeks is such a long time to be apart from her.

The plane headed inland somewhere along coast of Pahang. Glowing city lights below welcomed us back to Malaysia. That was another fascinating view. Unfortunately, it was impossible to capture that superb spectacle with the camera. Words could neither describe that sight nor how I felt as the glowing lights of town after town passed us by. I have never felt as relieved and as glad before when I finally heard the screech of the tyres when the planed touched down, and again when I saw the banner while waiting to board the KLIA Express. It felt great to be back on Malaysian soil again.

As no programme was planned for the morning, there was no need to get up as early as usual. We commuted via the monorail and train to Hachioji. The one thing common at all train stations are the rows of neatly parked bicycles. I have seen more bicycles than motorcycles all the places I went. Walkways in Tokyo are wide and very bicycle-friendly.

It was a short ride from Manganji to Takahatafudo. The sun was shinning brightly but the temperature was chilly. The elevator could only fit one wheelchair. One by one, we waited for our turn to get to the ground level, proceed to the Keio Line Takahatafudo Station and catch the train to Hachioji.

At the station, we had to take the Garavanta down the stairs. There were no elevators. At the other end of the tunnel, we took another Garavanta up to reach the platform. This was a routine we performed every evening coming back from Hachioji. It took the three of us about thirty minutes to move from the platform to the station entrance.

The Station Master at the Keio Hachioji was already waiting for us when we arrived. When the door opened, he placed the ramp to enable our wheelchairs to disembark from the train. This is the efficiency of the rail system in Tokyo. Whenever we board the train, the Station Master would place the ramp for us to get into the train and then inform the arriving station where another ramp would be ready and waiting for us.

This is where the Human Care Association is located. We spent nearly two weeks here learning the Independent Living Programme for People with Disabilities. What have we learnt? We were enlightened with the fact that with a proper support system, even the most severely physically impaired person can achieve independent living. This is what we will be bringing back to Malaysia and set in motion a transformation that will liberate many of our peers.

We spent the morning preparing our report for JICA Japan. An evaluation of our training was scheduled for the afternoon. After lunch, Ishizaka-san from JICA together with Akiyama-san and Tsutsumi-san listened while each of us presented our report for the Evaluation Meeting. On the whole, we were happy with the training. We had learnt more than we had expected. The staff of Human Care Association, Centre for Independent Living Hino, Machida Human Network and HANDS Setagaya had been more than generous in imparting their knowledge to us. Additionally, JICA and JICE had made sure that all our other needs were looked after. At the end of the meeting, Ishizaka-san presented us with a certificate from JICA. Tsutsumi-san presented us each with a present. She also passed to me a button hooked made by Hippie-san especially for me. With that, I can now wear clothes with button.

Human Care Association had planned a Farewell Party for us later in the evening. With some time to kill, I went to the welfare shop nearby to look for a gel cushion accompanied by Maejima-san. Welfare shops like this sell assistive aids for various kinds of disabilities and also for the elderly. The shop, unfortunately, did not stock the cushion. I had to place an order if I wanted it. I decided to look for one back in Malaysia instead. After the welfare shop, we then headed to the ¥100 shop to do some last minute shopping.

Japanese hospitality is one that will be difficult to forget. We were treated to a scrumptious array of food from authentic Japanese fare to pizza and pasta. Present at the party were Nakahishi-san, Nakahara-san, Akiyama-san, Tsutsumi-san, Maejima-san, Satio-san and PA Coordinators and staff of Human Care Association. We were requested to present a song and we sang Rasa Sayang, a traditional Malay song. In reciprocation, staff of Human Care Association sang a Japanese folk song and the Japanese version of If You Are Happy And You Know It. This final evening was great fun where we chatted freely about anything and everything. Again, we were present with presents each, this time by the Human Care Association.

When it was time to leave, we got together for a group photo. This will be one experience that I will never forget. We spent two wonderful weeks learning things that changed our lives as people with disabilities forever. We were well taken care of and all our needs were fully looked after. Japan is a beautiful country with beautiful polite people. It is difficult not to want to come back here again.

Sunday was basically spent lazing around the Hino Experience Room. We were all worn out from last evening’s misadventures. This being the first day of the Chinese New Year, we decided to celebrate it by getting Calvin to cook up a feast and invite our Japanese friends to join us for dinner. Cook up a feast Calvin did. Akiyama-san came with her PA together with Sato-san, Director of Japan Council in Independent Living Centres. A short while later, Wakasugi-san, PA Coordinator for Human Care Association arrived, followed by Maejima-san and Saito-san. Much later, another PA Coordinator whose name I cannot recall now arrived. After dinner, we shared the traditions and culture of the Chinese New Year and the similarities of other festivals that are celebrated in Japan. The surprise of the evening was when Akiyama-san and Maejima-san gave us each a present respectively. I got a mouse pad from Akiyama-san while Maejima-san gave me a box of chocolates and a Daruma doll. Despite my gloom earlier in the day, the new Spring turned out to be a jovial one.

Camwhoring was easy, thanks to Canon Powershot A610’s Vari-angle LCD and two-second timer, and Jolene who initiated me into this shameless art. It was a Saturday. Weekends are free days. The group decided to go sightseeing to Tokyo Tower and then to Asakusa for some last minute shopping. First we had to take the Monorail from Manganji to Takahatafudo, catch the Keio Line all the way to Shinjuku.

The ride to Shinjuku took thirty minutes. I always looked forward to such long trips in the train as there were many interesting sights along the way. It is so true when they say that the joys are in the journey, not the destination. There were times when I felt claustrophobic being in the midst of endless streams of people inside the railway complexes. The view outside the train, on the other hand, provided some serene relief from the hectic programmes we have been following during weekdays.

To reach Kuramae our final destination before Tokyo Tower, we took the Toei Oedo Subway. We were supposed to survey the Oedo Subway on our field trip to Machida but that was cancelled because of the heavy snowfall that time. We had to take several elevators to reach the subway station.

The air was chilly the moment we got out from the subway station. Just around the corner, Tokyo Tower rose up like a showy version of the Eiffel Tower in red and white. It was not exactly an impressive structure. What fascinated me was the stark contrast between the tower and the deep blue and cloudless sky in the background.

The tower was built atop a small hill. It took quite an effort for Calvin to push me up the slope. There was a small temple just before the top. Japan is such an interesting mishmash of a highly advanced society that still hold strong to traditions. It is not unusual to find a temple or shrine (I do not know the difference) nestled among modern high rise buildings in busy downtown Tokyo.

While the rest of them went up to the main observation deck, I hung around gift shops at the lower level. Entry to the main observation costs Y820. I figured that since I have not bothered to visit KL Tower, there is no reason why I should pay that amount of money to do the same thing in Japan. There was a Hello Kitty shop selling a vast range of authentic items. I got a few handphone cords for Wuan. Those are not for sale outside Japan and they were rather expensive.

At a road junction somewhere to the Asakusa Kannon Temple, we came across life-size figures of Doraemon and Ultraman, among others. I grew up watching Ultraman battling giant alien monsters on television and reading Doraemon comics. I as naturally excited to see these figures here in Tokyo.

The Kaminari-mon is the outer gate of the Asakusa Kannon Temple. It was situated at a busy intersection. A huge red lantern hung at the doorway. After that, 200 meters of stalls lined the paved walkway called Nakamise offering handicrafts and Japanese snacks. This reminded me of the bazaars at Kek Lok Si Temple in Penang and Petaling Street in Kuala Lumpur.

We got lost on the way back to Kuramae Station. The temperature was dropping. Unfortunately, Harry’s electric wheelchair ran out of power. Calvin and Kim had to take turn to push us and look for the station. It was a great relief when we finally found the station after going back and forth along the road in that condition for more than one hour. While Harry charged his wheelchair batteries at the station, we were glad to be able to get away from the cold. At the Keio Shinjuku Station, the Station Master allowed us to ride in the women only car back to Takahatafudo. Yes, the car was packed to the brim with women returning home from Shinjuku!