The Star reported that Datin Seri Jeanne Abdullah, the wife of Prime Minister Datuk Seri Abdullah Ahmad Badawi, was touched by the disabled-friendly facilities she saw at the Paralympic Games Village when she was in Beijing to visit Malaysian Paralympians. Datuk Seri Jeanne is urging developers to design more disabled friendly housing projects, saying that the nation should do more for disabled people.

I hope this message will not fall on deaf ears. Disabled people in Malaysia have been facing such issues far longer than the 24 years that I have been on a wheelchair. Perhaps Datin Seri Jeanne is not aware that Malaysia already has the Uniform Building By-Law 34A (UBBL 34A) that requires all public buildings to comply with Malaysian Standard MS 1183 and MS 1184. MS 1184 is the Code of Practice on Access for Disabled People to Public Buildings. It specifies how accessible facilities inside buildings should be built. The UBBL 34A has been gazetted by the various states in the mid-1990s.

Sadly, this provision in the UBBL 34A is seldom enforced by local governments. Public buildings are still allowed to be constructed without fulfilling the said requirements. To exacerbate matters, there is no law to ensure that external built environment such as pedestrian walkways are accessible to disabled people although a code of practice in the form of Malaysian Standard MS 1331 has been drawn up for such purposes.

The newspaper report also stated that Datuk Seri Jeanne hoped schools will encourage children to help disabled people if they come across one and that we should change our mindset to be more caring. Although it is heartening to note that she is trying to inculcate a caring attitude in students, it would have been better if we can build a society where disabled people can live independently instead of depending on such ad hoc forms of assistance. At the moment, disabled people, especially those with severe impairments, are unable to practice independent living because of the prejudices against disabled people.

Society still hold on to the view that disabled people cannot do things for themselves and therefore cannot live independently. There is this notion that disabled people need charity to survive. These are all fallacies. People are disabled by the environment and attitudes, and not by their conditions. It is how we build things and how we perceive disabled people that is disabling. Malaysia has to move from the antiquated Medical Model of Disability to the Social Model of Disability in order for disabled people to benefit from a level playing field in society.

Medical Model of Disability sees the disabled person as the problem. It emphasizes the rehabilitation of disabled people to make them fit into society. The focus is on correcting the impairment rather than meeting the needs. Social Model of Disability defines the difference between impairment and disability. Impairment does not necessarily lead to disability. People are disabled by manmade environmental barriers and social prejudices. The Social Model of Disability advocates the restructuring of society to eliminate institutional discrimination. It promotes the establishment of a conducive environment where disabled people can coexist on equal terms with society in general.

In my working trips overseas, I have met people with severe physical impairments in that are living independently in their communities. They are able to achieve this through a social support system that provides personal assistants, peer counselling and independent living skills training, among others. The accessible built environment and public transport system also plays an important role in enabling disabled people to move around conveniently to participate in the activities of the community that they live in.

Disabled people in Malaysia have been screaming themselves hoarse to advocate for similar social support systems to enable us to live independently in the community too. If it can be done in other countries, it can be done here. For one reason or another, issues of disabled people have not been given the attention it deserves. Disabled people are still being marginalized in all areas in society.

Where disability rights advocates have failed, perhaps Datuk Seri Jeanne can whisper into the ear of Prime Minister Datuk Seri Abdullah Ahmad Badawi to seriously look into the issues affecting disabled people in a holistic manner? Surely a few words from lips of the wife is worth a thousand words of disability rights advocates who have been unsuccessful in impressing the government on the real and urgent needs of disabled people.

The Star
Monday September 8, 2008
Jeanne visits paralympic team
By CELESTE FONG

BEIJING: Developers have been urged to design more disabled-friendly housing projects.

Datin Seri Jeanne Abdullah, the wife of Prime Minister Datuk Seri Abdullah Ahmad Badawi, who was touched by the disabled-friendly facilities she saw at the Paralympic Games Village here, said: “We should do more for the disabled.

“I hope schools will encourage and teach children to help (the disabled) if they see a disabled (person). We should change our mindset to be more caring,” she added.

Pointing at the disabled-friendly ATM machine booth, Jeanne said the facilities in the village showed the level of consideration for the disabled.

She was also awed by the spirit of the paralympians and the courage displayed by them, saying that Malaysians could emulate them.

“This is what we should be doing in our country,” she said, hoping that Malaysians could raise the level of consideration for the disabled.

Jeanne, the patron of the Malaysian Paralympic Council, was accompanied by Youth and Sports Minister Datuk Ismail Sabri Yaakob, Malaysian Ambassador to China Datuk Syed Norulzaman Kamarulzaman, Kuala Lumpur Mayor Datuk Ab Hakim Borhan and National Sports Council director-general Datuk Zolkples Embong to the games village here.

On the Malaysian paralympians, Jeanne, who met them in the village, said Abdullah had conveyed his best wishes to them.

The Malaysian paralympians will begin their respective events today.

Some information in the article below is not accurate. My notes are in red below the paragraphs.

Click on image for larger version.

Saturday April 5, 2008
Treated lightly
By SHOBA MANO

Fifty years into Merdeka, and the disabled are still fighting social prejudice in order to live independently.

A disabled person is usually confined to the home or cared for by family members. Some are sent to live in institutions or private nursing homes.

With these limited options, the disabled can hardly lead a fulfilling life, and do all the things that the able-bodied take for granted.

Hence, to improve their quality of life, the Independent Living Movement began in the US, starting with the Center for Independent Living in Berkley, California in the late 1960s.
The amended Street Drainage and Building Act specifies the gradient of ramps, but this one is just too steep. — SHOBA MANO

From there, the movement spread to Asia and flourished in Japan, where a government agency called the Japan International Cooperation Agency (Jica) began helping other Asian countries to implement Independent Living (IL) for the disabled.

Between 2005 and 2007, Jica worked with the Social Welfare Department in Malaysia to organise IL workshops and seminars in Kuala Lumpur. They trained at least 60 peer counsellors to provide emotional, relational, information and job-related support to other disabled.

However, most of these peer counsellors are unable to provide their services on a fulltime basis due to the lack of funding.

Peter Tan, 42, is one such peer counsellor. But thanks to a grant from Toyota Foundation of Japan, he operates the Independent Living Centre (ILC) in Kuala Lumpur on an ad hoc basis.

This ILC is one of two in Malaysia. The other is in Petaling Jaya. Unlike in Japan, the Malaysian government does not provide them with an annual grant, and hence, these peer counsellors only provide their services when they are free to do so.

“By comparison, Japan currently has 60 ILCs under the auspices of the National Council on Independent Living (NCIL) and Japan Council of Independent Living Centres (JCIL),” said Tan.

The acronym for the Japan Council on Independent Living Centers is JIL. It represents more than 200 Independent Living Centres in Japan. The National Council on Independent Living (NCIL) is based in the USA and has more than 400 Independent Living Centres under its wing. Both are independent of each other but are part of the Global Independent Living Network that was established recently after the Global Independent Living Summit (GSIL) in Korea that ran parallel with the 7th World Assembly of Disabled Peoples International (DPI).

These organisations receive annual grants from the Japanese Government, so that the ILCs can employ full-time personal assistants to help the disabled with daily activities.

Personal assistants in Japan earn salaries equal to those of fresh university graduates. They are also selected from a pool, so even if one or more of them go on leave, there will still be others to care for the disabled.

The Japanese ILCs also provide job opportunities by hiring the disabled as clerical and administrative staff.

Tan said the biggest problem faced by the disabled regarding independent living was not their physical limitations.

“Our biggest problem is social prejudice. When society treats us as if we don’t exist, and don’t consider our disabilities when designing access to public transport, buildings and offices, then we are forced into isolation.

“This is when the futility of life sets in, and we become depressed,” he said.

Tan said under the standard set by Jica, IL was defined as having equal opportunities and access to education, jobs, mobility and all other basic rights enjoyed by the able-bodied.

The standards mentioned above were not set by JICA but are included as part and parcel of the rights-based advocacy of the Independent Living Movement. There are four key concepts of Independent Living that were promulgated by Ed Roberts, the father of the Independent Living Movement. These concepts are adhered to by many Independent Living Centres worldwide. They are as follows:

1. People with disabilities should live in their communities instead of staying in institutions.
2. People with disabilities are neither patients to be cared for, children to be protected, nor God to be worshipped.
3. People with disabilities themselves can identify the necessary assistance required and manage it.
4. People with disabilities are the victims of social prejudice rather than the victims of disabilities.

The criterias for accredited Independent Living Centres are set by the Independent Living Councils of the respective countries. These Independent Living Councils employ similar criterias:

1. 51% of the board members must be disabled persons where the chairman and other key members must also be disabled persons
2. The Centre must be non-residential
3. The Centre must provide core services – peer counseling, personal assistant service, Independent Living Skills training, social advocacy and referral services on housing and welfare

The Uniform Building (Amendment) Bylaws 1991 of the Street Drainage and Building Act 1974 provides clear guidelines for the disabled to have access to public buildings and even specifies the gradient for ramps.

“But even modern buildings do not adhere to the law. So whatever ramp they have is useless to the disabled as the gradient is too steep and can cause a wheelchair to tip backwards.”

For public transport, only the Putra LRT is accessible, while the STAR and Monorail services are still inaccessible to the disabled,” said Tan.

“Even feeder buses do not have disabled-friendly facilities, although some of them do have ramps. The problem is that when they are let down, these ramps do not align correctly to the curb and can cause a disabled person to fall off his wheelchair.”

N. Surendran, the legal advisor to Malaysians against Death Penalty and Torture (Madpet), an organisation dedicated to fighting for the rights of the disabled and animals, among others, said social prejudice had much broader implications in Malaysia.

“Social prejudice is not just confined to the disabled, but extends to animals too and that is why very few among the disabled community have pets.

“The blind and those in wheelchairs, for instance, can be far more independent if they were encouraged to have trained guide dogs to take them around. With guide dogs and service dogs that are trained for other disabilities, even the reliance on personal assistants will be reduced.

“But these dogs are not allowed in public places in Malaysia, unlike overseas where the disabled can take them everywhere they go,” he said

Surendran urged the government to provide funding for ILCs and support the medical and food bills of dogs and other pets, due to the therapeutic effect they have on humans.

He said with government funding, Madpet can even help to train dogs for the disabled.

“This will result in more dogs, cats and other animals being adopted from shelters as well, so it’s a win-win situation for humans and animals,” he said.

Surendran also complained that the proposed Persons with Disability Act, which was drafted in 2002, has yet to be tabled in Parliament.

“I’m also unable to obtain a copy of the Bill to check for any omissions. NGOs and others with experience in helping the disabled ought to have been consulted before the Bill was drafted, but this did not happen either,” he said.

o To learn more about independent living visit http://cilpenang.org/category/independent-living

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.