Finally, it was time to go back. As all the delegates from Malaysia were catching the same flight back, a non-step bus as assigned to shuttle us and a few other delegates from Europe to the airport. The wide window of the bus gave us a better view of the scenery of the trip. It was an uneventful journey. There was nothing interesting about the scenery as the airport highway cut across relatively uninhabited terrain.

When we checked in, I confirmed my request for low-protein meal. The first thing after I went through the immigration was to look for a toilet. I knew that Malaysia Airlines would be using the same plane and there would not be an on-board aisle chair for me to go to the toilet.

I have to empty my bladder every three hours but the journey was more than six hours. I controlled my fluid intake since I woke up and hoped that my diapers could hold whatever my bladder had to release. Cutting down fluid intake and not emptying my bladder periodically could be dangerous. Insufficient fluid intake may cause urinary infection. Not emptying my bladder on schedule may cause a reflux of the urine back to my kidneys. Both could damage my kidneys further.

When meals were served, I discovered that my low-protein meal had a full portion of fish fillet. I had to leave most of the meat uneaten. With a half full stomach, I could not do much but try to catch some sleep. To add insult to injury, the sandwich bun served later had chicken fillet filling. I removed all the chicken and ate the bun. I was annoyed and made a mental note that I would send a complaint to Malaysia Airlines when I reached home.

Red bridge somewhere between Seoul and Incheon.

Pine trees lining the airport highway.

Toll plaza along the airport highway.

Accessibility symbol used widely in Korea.

Toilet at the Incheon International Airport.

Boarding lounge at the Incheon International Airport.

Malaysia Airlines Flight MH67 Incheon to Kuala Lumpur.

Malaysia Airlines low-protein meal that was not.

Do not be fooled by Malaysia Airlines’ low-protein meal label. It was not!.

We reached the hotel at about 4.00pm. As it was still early, Peter wanted to attend mass at the Myong Dong Cathedral. After checking with the concierge, we took the shuttle bus to Westin Chosun Hotel in downtown Seoul where we could then make our way to the Cathedral by foot.

In downtown Seoul, the traffic is fast and furious. One cannot simply walk across the road. There are no pedestrian crossings. There were underground crossings in all directions for that purpose. Each of the major entrances were equipped with stair lifts. We had to get the assistance of some friendly Seoulites to page for the attendant to engage the lift. These underground crossings are brightly lit and are lined with shops.

We had to weave our way through crowded streets of shoppers and roadside stalls selling everything from cuttlefish snacks to apparels to souvenirs. Myong Dong Cathedral was situated on a hillock. The effort getting up there was worth it as it gave us a good view of the surrounding areas. Having made our way up, we rested a while waiting for Mass to conclude and attend the next one. The main facade of the Cathedral was under renovation.

The interior of the Cathedral totally blew me away. The sight was simply awesome. There was even a huge pipe organ inside. Mass was conducted in Korean. Although the structure of Mass was slightly different from those in Malaysia, we could follow it without difficulty.

After Mass, we mad our way downhill and wandered around the streets taking in the sight, sounds and smell of Myong Dong. This area was full of street vendors, shops selling anything and everything, restaurant of all kinds and was packed to the brim with shoppers even at around 11.00am.

Accessible taxi that charges half the fare of ordinary taxis in Seoul. Such taxis are
equipped with lifts and can accommodate one wheelchair.

Westin Chosun Seoul.

Downtown Seoul.

Entrance to underground pedestrian crossing in downtown Seoul.

Stair lift with attendant.

Going down the underground pedestrian crossing on a stair lift.

Sogong Shopping Centre and underground pedestrian crossing.

Myong Dong Cathedral - the main facade was under renovation.

View from the Myong Dong Cathedral.

Information board on the history of the Myong Dong Cathedral.

Bust at the Myong Dong Cathedral.

Pipe organ inside the Myong Dong Cathedral.

Altar of the Myong Dong Cathedral.

Statue of Jesus with open arms facing Myong Dong shopping district.

One of the streets in Myong Dong shopping district.

Korean street food - caramelised sweet potato.

This was the first morning I woke up feeling as light as a feather. It was the last day of the 7th DPI World Assembly. No more hectic shuffling between concurrent workshops and I had delivered my two presentations to an international audience of my peers. I was still up there somewhere in between the clouds.

I did not follow the programme of the morning as it was all speeches, speeches and more speeches. As it was the last day of the World Assembly, I took the opportunity to take some shots with friends that I made over the course of the four days, not knowing when we could meet again.

After the closing ceremony of the World Assembly, Shoji-san had organised a meeting of leaders of the Independent Living Movement of the Asia-Pacific region. We discussed how we could cooperate and take the local and regional movement o a higher level through cooperation and sharing of resources. This multi-lateral cooperation would be under the auspices of the Asia-Pacific Network on Independent Living Centres (APNIL).

One thing that I like to do every morning on the way to KINTEX is to count the number of church spires. Seoul is a city full of those. Everywhere I turned to look, there was bound to be at least three spires sticking out from the amidst low rise buildings. As we were going back early today, I counted the spires on the way back to the hotel and lost count after thirty. I believe there could be more than 50 spires along the way.

Yes, I have a fascination for these non-step buses.

7th Disabled Peoples’ International World Assembly Wall of Dreams where we put down our dreams
and aspirations for a world without barriers and discrimination.

One for the memory - on the stage at the 7th Disabled Peoples’ International World Assembly.

Fellow Independent Living advocates - Lin Chun Chieh (Taiwan), Abner Manlapaz (Philippines),
Edwin de Villa (Philippines) and Peter Tan.

One for the memory - on the stage at the 7th Disabled Peoples’ International World Assembly.

Performance before the closing ceremomy.

Song Jin-Seok - Official photographer of the 7th DPI WA.

With Ko-Kwan-Chul - one of the leaders of the Independent Living Movement in Korea.

APNIL Meeting conducted by Shoji Nakanishi after the conclusion of the 7th DPI WA.

Seoul - Land of church spires.

Seoul - Land of church spires.

Seoul - Land of church spires.

After two days of trying to get a good shot, I finally managed to take several decent images of one of the non-step buses with its ramp deployed. When picking up or dropping off passengers in wheelchairs, the height of the bus is lowered. The entrance/exit side is then “kneeled” to match the height of the kerb and the ramp is deployed. A wheelchair user can then get into the bus with little effort.

We arrived at KINTEX early again. With time in hand, I decided to explore the vast ground outside the complex. When I say vast, it really is. I was also pleasantly surprised by the abundance of accessible parking at the car park. I was in for another pleasant surprise when I caught sight of Ai-Chan getting off one of the shuttle buses. She was scheduled to speak in one of the workshops on that day.

The day passed quickly as I attended one workshop to another. In between, that, I managed to squeeze some time to visit a few of the activities organised on the sidelines to keep delegates entertained while they are not attending any of the workshops. There were clowns sculpting balloons, caricature artists and day tours to the DMZ and other places of interests around Seoul.

The day did not end at the conclusion of all the workshops for the day. Many of us stayed back to attend the Global Summit on Independent Living. Among the highlight of the Summit was the unanimous support by all the delegates present to the proposal by Shoji Nakanishi to establish the Global Independent Living Network. He had earlier this year established the Asia-Pacific Network in Independent Living Centres (APNIL).

I was also one of the speakers at the Summit on IL in Asia-Pacific presenting the development of the Independent Living Movement in Malaysia similar to the presentation I did the day before. My fellow speakers were Udomchok Churut from Thailand, Muhammad Shafiq-ur-Rehman from Pakistan, Abner Manlapaz from the Philippines and Ko Kwan-Chul from Korea.

Although I have conducted trainings and spoke in many seminars on Independent Living, I was as nervous as a long-tailed cat in a room full of rocking chairs. Before me were my peers who have experience working in the movement for decades. Compared to them, the two years of my involvement made me feel like a kid on his first day of school. I am grateful for Shoji Nakanishi for giving me the opportunity to address such an esteemed audience.

The last event was a cake cutting ceremony to celebrate the successful conclusion of the Summit where all delegates grouped together before the stage as a sing of solidarity. Sitting there on the stage watching camera flashes going off in all direction and the seeming chaotic celebration of so many disabled persons gave me a sense of hope that we can accomplish great things if we put our hearts to it.

Non-step bus with the ramp deployed.

Boarding the non-step bus in my wheelchair.

KINTEX.

KINTEX.

KINTEX.

Accessible parking at KINTEX.

Aiko Tsutsumi, Peter Tan, Hiroaki Furihata and an unknown person outside KINTEX.

Peter Tan at KINTEX.

Jung Woon-dae of Ablenews and Peter Tan at KINTEX.

Jung Woon-dae of Ablenews, Hiroko Fujimoto and Peter Tan at KINTEX.

Disability Film Screening during the 7th DPI World Assembly.

Posing with the caricature artist. Unfortunately I misplaced the caricature.

What I had for lunch everyday - low-protein meal Korean-style.

Dr. Glen White giving a presentation on the management of Independent Living Centres.

Speaking at the Global Summit on Independent Living.

Celebrating the conclusion of a successful Global Summit on Independent Living.

INTRODUCTION

Independent Living (IL) is still at its infancy stages in Malaysia although it was introduced in Malaysia in 1999. Disabled people are still marginalised in all areas of their lives including education, employment and social support services.

OVERVIEW

This paper looks at the situation of disabled people, history of IL and the challenges of implementing IL in Malaysia.

QUICK FACTS

Malaysia has a population of 27.17 million people. A total of 197,519 disabled people have registered with the Department of Social Welfare Malaysia (DSW) at the end of 2006. This figure is not a true reflection of the number of disabled people as registration is voluntary. At the moment there is no anti-discrimination law. A proposed Persons with Disability Act drafted in 2002 has not been sent to the Parliament yet.

1 SITUATION OF DISABLED PEOPLE

1.1 Prevalence of Medical Model of Disability

The medical model of disability is deeply entrenched in the mindset of Malaysians. Disability is viewed as other people’s problems rather than the collective problem of society. There is a strong prejudice towards disability and disabled people. The general perception is that people are disabled by their conditions rather than by structural and attitudinal barriers.

1.2 Institutionalisation of People with Severe Disabilities

People with severe disabilities are mostly cared for at home by family members or by a domestic helper employed by the family. Other options include staying in institutions for disabled people or private nursing homes for the elderly.

Many of the institutions double up as training centres to provide vocational skills to residents for them to earn a living. Emphasis is placed on financial independence. This propagates the misconception that the ability to earn a living is the key to independence.

The DSW is giving out an allowance of RM200 (USD60) per month to disabled persons who are working and getting a monthly salary of below RM750 (USD215). Those who do no work are not entitled to this allowance.

Private nursing homes for the elderly are profit-oriented. They will accept anybody as long as the monthly charges are paid promptly. These homes are run like institutions where the daily routines of residents are regimented.

These options leave very little room for disabled people to assert their right to live independently. They have limited or no control over what they want to do. They do not have much say in how they want to live their lives. Dignity and self-determination are surrendered just to have a place to stay and be cared for.

1.3 Moving Towards Social Model of Disability

There is an urgent need to implement measures to advocate for the self-determination of disabled persons in Malaysia. Through the initiative of Japan International Cooperation Agency (JICA) and the DSW, a series of seminars and workshops were organised to empower disabled persons. These colloquiums have sowed the seeds of Social Model of Disability not only in disabled people but in officers at the DSW. This is a good move as welfare officers are now able to empathise better with the challenges faced by disabled people.

2 IL MOVEMENT IN MALAYSIA

2.1 History of Independent Living

The first IL Workshop in Malaysia was conducted in Kuala Lumpur from August 28 - 30, 1999 by a peer counsellor from the Human Care Association of Japan. This workshop was organized by a group of disabled leaders in Malaysia in close coordination with the Asia Disability Institute. 14 participants attended. Following that workshop, the IL Programme manual was translated into the Malay language.

From 2005 to July 2007, the DSW and JICA have organised one IL Workshop and Seminar and two Peer Counselling Workshops in Kuala Lumpur respectively. These trainings were all conducted by peer counsellors from the Human Care Association and assisted by local resource persons. To date about 60 disabled persons have been trained on IL and peer counselling in these courses.

Several one-day IL seminars have been held in various states outside Kuala Lumpur, namely in Penang, Perak and Johor by peer counsellors from the Human Care Association and Malaysia. IL workshops and peer counselling courses are also conducted by individual organisations working on IL projects for their members. Peer counsellors have been visiting hospital rehabilitation units to share the concepts of IL to newly disabled people and provide information support services provided by the government.

Recently, the IL Programme Manual was translated into Chinese. IL and Peer Counselling video have also been translated into Malay, English and Chinese in a project funded by JICA. These translated versions are important as Malaysia is multi-ethnic country of Malays, Chinese and Indians. Materials in different languages give a better understanding of the contents.

In 2005 and 2006 respectively, the DSW and JICA organised Training the Trainers Workshop on Disability Equality Training (DET). This was to familiarise leaders of the IL movement in using various methods to advocate for the removal of structural and attitudinal barriers.

2.2 Advocacy

Since 2006, there has been an increase in high-profile advocacy activities on disability issues. These include advocacy on accessibility in the built-environment and public transport, and a call to the government to expedite the passing of the Persons with Disabilities Bill in the Parliament to remove discrimination and protect the rights of disabled people in Malaysia.

2.3 IL Centres

The support extended by JICA and the Human Care Association since 2005 in organising trainings for disabled leaders coupled with the current advocacy activities have created a greater awareness among disabled people on their rights and the concepts of Independent Living. The time is ripe now for the establishment of IL Centres in Malaysia.

Currently IL-based activities are being conducted by organisations on an ad-hoc basis as there are no IL Centres in Malaysia that adheres to the principles similar to those set by the National Council on Independent Living (NCIL) and Japan Council of Independent Living Centres (JIL).

Nevertheless, by the end of 2007 two Independent Living Centres will be officially set up in Malaysia based on established IL Centre principles. One is in Kuala Lumpur and the other in Petaling Jaya, a city next to Kuala Lumpur.

3 CHALLENGES OF THE IL MOVEMENT

3.1 Reservations Regarding IL

IL is a relatively new concept in Malaysia. As with all things new, doubts and fear of the unknown arises. There is a need to disseminate more information to target groups.

3.2 Funding of IL Centres and IL-Related Services

At the moment, the government does not provide grants for the running of IL Centres or for personal assistant services. IL Centres have to look for alternative sources of funding.

3.3 Peer Counsellors

Malaysia is not lacking in peer counsellors and resource persons on IL. About 60 persons have been trained since 2005. However, most are working in full-time jobs not related to IL. Financial independence is still seen as the only way to achieve independent living. There is a need to have peer counsellors working fulltime in IL Centres.

3.4 Personal Assistant Service

It is thought that with financial independence, carers can be employed to act as personal assistants. These carers are brought into Malaysia as domestic helpers and have two-year contracts. Some leave after their contract expires while others renew the contract for a few more terms.

The cost of employing domestic helpers is escalating. Many prefer to work in countries such as Singapore, Hong Kong and the Middle East where the salary is higher.

Unlike IL Centres which have a pool of personal assistants, there is only one domestic helper for one disabled person for the entire two-year duration. If the domestic helper is unable to work for any reason, the disabled person will be stranded. There is a need to build teams of local personal assistants to ensure continuity of service.

4 FUTURE DIRECTION

Subsequent to the setting up of the two Independent Living Centres, an umbrella body of IL Centres Council similar to that of the Japan Council on Independent Living Centres (JIL) will be formed to regulate the standards of Independent Living Centres. There are also plans to set up two more IL Centres within the next three years. One will be in Penang in the north and the other in Johor in the south.

To ensure the sustainability of these Independent Living Centres, it is essential to get support and funding from the government. It is also vital to get the government to provide funding for personal assistant service. To this end, Independent Living Centres and the Council have to actively engage the government and push for the recognition of IL as the fundamental human right of disabled people to live independently in the community with full support from the government.

CONCLUSION

This is an exciting time for disabled people in Malaysia. The country aspires to become a developed nation by 2020. The government is working on building human capital to power this aspiration. Disabled people in Malaysia would like to see the phrase “human capital” to include disabled people too. Recent high-profile advocacy activities have made the government aware of the problems faced by disabled people. In a way, we have created a demand and the government has no choice but to supply.

Disabled people too have to keep up with the advocacy activities. The seeds of IL have been sown in Malaysia. We have to continue nurturing it. The beginning may be difficult. The first few baby steps are always challenging. We believe that by putting our hearts into it we can slowly bring about changes our lives through IL. We have taken the first step in a journey of one thousand miles.

REFERENCE

Department of Social Welfare Malaysia.
Website: http://www.jkm.gov.my/

Department of Statistics Malaysia.
Website: http://www.statistics.gov.my/

Nakanishi, Shoji (1997) Historical Perspective and Development of Independent Living Movement in Japan. Human Care Association.
Website: http://www.dinf.ne.jp/doc/english/resource/z00009/z0000909.htm

Nakanishi, Yukiko (1999) IL Movement Spreads in Asia. Disability International; Asia-Pacific Region, Vol.11, No. 2 1999.
Website: http://www.independentliving.org/docs1/dpidi299.html

National Council on Independent Living.
website: http://www.ncil.org/

Tan, Peter (2005, 2006 & 2007) The Digital Awakening.
Website: http://www.petertan.com/blog/category/disability-issues/independent-living/

Note: This paper was presented at the 7th Disabled Peoples’ International World Assembly in Korea on September 6, 2007.