Wuan’s pink roses and red berries hand bouquet, our gold wedding rings and
William and Cynthia’s gift of two heart-shaped rose quartzes.

Our marriage was solemnised at the stroke of twelve this afternoon. I was choked with emotions when I responded to the marriage registrar’s question with an “I do.” This is the happiest day of my life. After nine years of courtship, Wuan and I finally took the leap of faith to become man and wife in the eyes of the law.

Wuan was my pillar of strength when I sank into depression after Mum’s death. She has been there with me through thick and thin, supporting me all the way in whatever I did. My life would have been so incomplete without her. God took back the woman who loved me most and sent another who loves me equally as much. I am so blessed.

It was a private affair. William and Cynthia were our witnesses and the only persons in the room during the signing of the marriage certificates. All the four of us met around the same time back in the end of 1998. Therefore they were naturally the most suitable persons we could think of to become our witnesses on this joyous occasion.

Reallybites revealed this two days before in the entry titled Till Death Do Us Part.

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.

The Korean Organising Committee for the 7th Disabled Peoples’ International World Assembly had arranged to ferry participants to KINTEX in 3 types of vehicles – lift vans, non-step buses and lift buses. Lift buses took the longest time to board. This morning, I was in line to board to a non-step bus. I wheeled into it from the walkway with little effort. My wheelchair was secured by an electrical wheel clamp and a safety belt. There was also a foldable grab bar for me to hold on to.

The journey was uneventful. The sky was overcast. It has been like that since the day we arrived at Seoul. We arrived at KINTEX early. Peter and I had sandwiches for breakfast at one of the food outlets at KINTEX. We still had some time left after breakfast and before the programme of the day began and took that opportunity to visit the Korea Senior Life Expo 2007 that was being held at the adjacent exhibition hall. Many of the booths showcased items such as wheelchairs, adjustable beds and assistive devices that can make life easier for senior citizens and those with mobility impairments.

Throughout the day, I attended workshops by leaders of the Independent Living Centres from the USA, Canada, Japan, South Korea and Pakistan. It was an eye opener to listen to the speakers talking about the activities of their respective Independent Living Centres. The Independent Living Movement has just begun in Malaysia. Through those talks I learnt about the development in other countries and how those examples can be best applied in Malaysia.

On the same day in the afternoon, I presented a paper on the Independent Living Movement in Malaysia. I talked about the challenges that we face here as we work on supporting severely disabled persons living in the community. My focus was on disabled people in the Klang Valley who needed such services. I was also glad that I made a few friends who generously offered to assist us here in Malaysia.

The schedule for the day ran smoothly and ended right on the dot. Vivek and I shared the same bus on the way back. We decided to get the bus driver to drop us off at the shops near to the hotel for us to have our dinner and buy some groceries. There were six shops there and all served only bulgogi which is a popular cuisine in Korea.

Bulgogi is beef slices grilled over a charcoal stove and then wrapped in lettuce together with raw garlic, sliced onion, kimchi and other pickled vegetables. As I could not take beef, we also ordered pork and ate it with rice. It was nice but not something that I would want to eat everyday. Having filled our tummies, we went back to the hotel for a well deserved rest.

Peter having his breakfast at the Messe Snackbar at KINTEX.

The unmistakable pink coloured Mammo Bus offering breast cancer tests
at the Korea Senior Life Expo 2007 at KINTEX.

Exhibits at the Korea Senior Life Expo 2007.

Posing before the congratulatory floral arrangement with fellow participants.
(L-R) Vo Thi Hoang Yen, Director of Disability Resource And Development, Vietnam;
Dr. Glen White, Director of Research & Training Center on Independent Living, University of Kansas;
Peter Tan; Sainbayar Samdanjamts, Chairman of Mongolian Federation of Disabled Persons, Mongolia.
(Standing) Assistant of Mr. Sainbayar.

Peter and Peter posing before the floral tributes at 7th DPI World Assembly.

Peter Tan speaking at the 7th Disabled Peoples’ International World Assembly.
The other panelists at the workshop were Marica Miric, Manda Knezivic and Ljubica Lukacic
of the Croatian Union of Associations of Persons with Disabilities; Udomchok Churut,
Chairperson of Thailand Council for Independent Living;
and Sang Ho Lee of the People Love Yangchoen Center for Independent Living.

Peter Tan speaking at the 7th Disabled Peoples’ International World Assembly.
(L-R) Shoji Nakanishi, Executive Director of Japan Council on Independent Living Centers;
Peter Tan and Udomchok Churut.

Dr. Glen White, Park Chano, Director of Seoul Center for Independent Living, Korea; Peter Tan; and
John Lancaster, Executive Director of National Council of Independent Living, USA after the workshop.

Dinner - Bulgogi - Korean beef BBQ.

We were informed that the shuttle service to KINTEX, the venue of the 7th Disabled Peoples’ International World Assembly, would leave the hotel at 7.00am. I requested that the front office give us a wake up call at 5.45am. I wanted to go through the morning routine without having to rush through it. We were at the designated stop at 7.00am sharp but the first bus only left the hotel at 7.56am.

The journey to KINTEX took 50 minutes. A team of volunteers were swarming around the bus providing assistance to participants who needed it. As I got into the building, the sight of so many people in wheelchairs overwhelmed me. I have never seen so many wheelchair users congregating in one place before.

There was a long queue of participants waiting to get their identification tags and vouchers for the conference kits. I waited for nearly one hour before mine was issued. We were then quickly ushered into the main hall where the opening ceremony of the World Assembly was to be held. The rest of the day went by in a blur as we moved very quickly from one event to another.

The most memorable event of the entire day was the Qianshou Guan Yin (Thousand Hands Bodhisattva) dance performance by the China Disabled People’s Performing Arts Troupe. All the dancers had hearing impairment. Their timing was impeccable. Never in my life had I seen such an incredible performance. If I ever have the opportunity, I would love to see them in action again. It was truly an unforgettable experience.

When we got back to the hotel at around 10.45pm. Even though, there was nothing much to do on the first day of the World Assembly except attending the opening ceremony and the welcoming dinner, it was tiring nevertheless. The size of the venue made moving from one location to another strenuous. By the time I finished bathing and got ready for bed, it was already 1.23am.

Non-step bus to ferry participants to the 7th DPI World Assembly from Grand Hilton Seoul to KINTEX.

KINTEX - Venue of the 7th DPI World Assembly in Seoul, South Korea.

Getting down from a lift bus.

With Prof. Akiie Ninomiya, Chief Advisor of APCD at KINTEX.

First view of Exhibition Hall 1 at KINTEX.

Opening ceremony of the 7th Disabled Peoples’ International World Assembly in progress.

7th Disabled Peoples’ International World Assembly Help Desk.

The 7th Disabled Peoples’ International World Assembly opening ceremony still in progress.

Portable toilets at the 7th Disabled Peoples’ International World Assembly.

Cleaning lady manning the portable toilet at the 7th Disabled Peoples’ International World Assembly.

Cleaning lady assisting me into the portable toilet at
the 7th Disabled Peoples’ International World Assembly.

Hyundai exhibiting a ramp van at the 7th Disabled Peoples’ International World Assembly.

A Hyundai lift van at the 7th Disabled Peoples’ International World Assembly.

Posing with a guide dog at the 7th Disabled Peoples’ International World Assembly.

Freshness Burger - one of the few food outlets at KINTEX.

7th Disabled Peoples’ International World Assembly Welcoming Dinner
The China Disabled People’s Performing Art Troupe performing the
impressive Qianshou Guan Yin (Thousand Hands Bodhisattva).

Independent Living Leader Reception at the 7th Disabled Peoples’ International World Assembly.

Independent Living Leader Reception at the 7th Disabled Peoples’ International World Assembly.

Calling it a day on the first day of the 7th Disabled Peoples’ International World Assembly.

Grand Hilton Seoul.

We woke up late as we did not sleep well in the aircraft the day before. The Grand Hilton Seoul has several restaurants. We decided to eat at the Atrium Cafe. I had Farfalle Primavera. Peter ordered something similar. Our first meal in Seoul cost RM150.

Ginkgo biloba fruits.

Nothing was planned for that day. The reason why I added an extra day to the original schedule was because I wanted more time to settle down. I knew that my body was no longer able to withstand the rigours of four full days of the World Assembly.

New found friends Yen and Vivek.

The weather was nice and cool with the temperature hovering around 20°C. We went for a walkabout around the hotel. I took some shots of the hotel for memories not knowing when I could return to Seoul again, if ever.

Itaewon.

I looked at a row of trees planted by the driveway and thought the leaves looked familiar. Indeed they were! Those were ginkgo trees! With fruits too! The tail started to wag again. I had always wanted to see how a live ginkgo tree looked like and there I was looking at them with fruits.

Yen, Vivek and I at Itaewon.

After the walkabout, we went back and met two fellow participants of the 7th DPI World Assembly who were also staying at the same hotel. Yen is from Vietnam while Vivek is from Singapore. When we exchanged name cards, Yen realised that she had quoted some of my blog entries regarding AirAsia for an article that she wrote.

Antique shop at Itaewon.

Apparently, Yen and Vivek were waiting to take the hotel’s shuttle bus to Itaewon. Peter and I told them that we would follow them since we had nothing planned for the day. We would also like to catch some sights of Seoul before the hectic schedule of the next few days.

McDonalds at Itaewon - The Golden Arches is everywhere in Seoul.

The trip from the hotel to Itaewon took 40 minutes. Itaewon was a street with shops and walkways of stalls selling souvenirs, apparels, footwear and other knick-knacks. There were also a host of restaurants offering authentic Korean and international cuisines, fast food and bars. After we had finished traversing the entire length of the street where we bought some souvenirs, we slowly made our way back to the bus stop to wait for the shuttle bus to take us back to the hotel. So much for the plan to rest before the World Assembly.