Treated Lightly: The Star – Weekender – April 5, 2008

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

Treated Lightly: The Star Weekender - April 5, 2008
Click on image for larger version

Saturday April 5, 2008
Treated lightly

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

Author: Peter Tan

Peter Gabriel Tan. Penangite residing in the Klang Valley. Blissfully married to Wuan. A LaSallian through and through. Slave to three cats. Wheelchair user since 1984. End-stage renal disease since 2017. Principal Facilitator at Peter Tan Training specialising in Disability Equality Training. Former columnist of Breaking Barriers with The Borneo Post. This blog chronicles my life, thoughts and opinions. Connect with me on Twitter and Facebook.