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

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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

Thanks to Lilei Chow who forwarded news articles on Malaysia becoming the latest signatory to the United Nations Convention on the Right of Persons with Disabilities (CRPD). Malaysia signed the convention on April 8, 2008. This is a milestone in the disability movement in our country.

However, the same news articles did not mention if Malaysia also signed the Optional Protocol to the Convention on the Rights of Persons with Disabilities and whether Malaysia had reservations towards some of the articles in the CRPD. The Optional Protocol enables individuals whose rights are violated to seek redress from the Committee of Persons with Disabilities after exhausting all the remedies of national laws.

The United Nations Enable page on Convention and Protocol Signatories and Ratification listed Malaysia as having only signed the Convention. The government should show its full commitment by also signing the Protocol and at the same time ratify the Convention soonest possible.

At the same time, the government should also consider drawing up an anti-discrimination law to protect the rights of disabled people. The Persons With Disabilities Bill is non-punitive and therefore toothless. The Uniform Building By-Law 34-A (UBBL 34A) under the Streets, Drainage and Buildings Act must also be strictly enforced to ensure that all public buildings are fully accessible. It is high time the By-Law includes external environment as it currently does not require that those places be accessible to disabled people.

The UBBL 34A is a good example of how the rights of disabled people are not not being protected by a piece of legislation that has been in existence since the mid-90s. The government has had fifteen years to do what is required in the By-Law but they have done little. Therefore I wonder how the Persons with Disabilitie Bill will be any different when past laws have proven otherwise.

Nevertheless, having signed the Convention, the government should now get down to implementing the policies on disabilities to ensure that disabled people are accorded their equal and rightful place in society. Policies that discriminates should be removed with immediate effect. Infrastructure in the forms of public transport and built environment should be made accessible to all.

The government can begin by ensuring that RapidKL, Rapid Penang, Star LRT and all government facilities are accessible to disabled people within a fixed time frame. The other issues that must be looked into are education, employment and the provision of independent living support to people with severe disabilities. Are we up to it? Time will tell. Until then, I am reservedly optimistic. I have experienced too many empty promises and poorly enforced legislation to believe that things will change for the better any time soon.

The Star Online
Thursday April 10, 2008
Malaysia signs UN convention on disabled

NEW YORK: Malaysia has signed the Convention on the Rights of Persons with Disabilities at the United Nations headquarters here.

The Malaysian Government was represented by Datuk Faizah Mohd Tahir, Secretary General of the Ministry of Women, Family and Community Development, said a statement issued by her entourage.

The signing was witnessed by Annebeth Rosenboom, chief of the treaty section at the UN’s Office of Legal Affairs, Malaysia Consular at New York Raja Nurshirwan Zainal Abidin, and National Population and Family Development director Aminah Abdul Rahman.

The Convention entitles the disabled to the full enjoyment of all human rights and ensures full and effective participation as well as inclusion in society, on an equal basis with others.

The eight general principles of the Convention are:

* Respect for inherent dignity and individual autonomy; * Non-discrimination; * Full and effective participation and inclusion in society; * Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; * Equality of opportunity; * Accessibility; * Gender equality and respect for the evolving capacities of children with disabilities; and * Respect for the rights of children with disabilities to develop and preserve their identities.

The signing shows the Government’s concern and commitment following the formulation of the Policy on Persons with Disabilities and its Plan of Action, the Persons with Disabilities Act 2007 and the recent appointment of a disabled person as a senator, the statement said.

BERNAMA
April 09, 2008 18:44 PM

Malaysia Signs UN Treaty On Rights Of Persons With Disabilities

KUALA LUMPUR, April 9 (Bernama) — Malaysia is now a signatory to the Convention on the Rights of Persons with Disabilities, a treaty that upholds and safeguards the rights of people with disabilities to be independent and to live with dignity and respect.

Women, Family and Community Development Ministry’s secretary-general Datuk Faizah Mohd Tahir signed the treaty for Malaysia at a ceremony held at the United Nations’s (UN) headquarters in New York Tuesday.

According to a statement from the ministry, the signing of the convention was witnessed by UN’s Office of Legal Affairs’ Chief of Treaty Section Annebeth Rosenboom, Malaysia’s Counsellor in New York Raja Nurshirwan Zainal Abidin and Director of National Population and Family Development Aminah Abdul Rahman.

The long-awaited convention underlines eight general principles which include respect for inherent dignity and individual autonomy, non-discrimination, full and effective participation and inclusion in society, respect for difference, and acceptance of persons with disabilities as part of human diversity and humanity.

The statement said the signing of the convention showed the government’s concern and commitment following the formulation of the Policy on Persons with Disabilities and its plan of action.

– BERNAMA

Related entries:
The Malaysian Perspective On The Convention On The Rights Of Persons With Disabilities
Persons With Disabilities Bill 2007 - All Bark And No Bite

MEMORANDUM TO THE GOVERNMENT OF SELANGOR DARUL EHSAN ON FACILITIES FOR DISABLED PEOPLE

Introduction
The United Nations estimates that there are 650 million disabled people in the world which corresponds to 10 percent of global population. 80 percent of these people live in developing countries, many in conditions of poverty. 80 percent of disabled people of employable age are jobless.

The United Nations Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities states the following:

The fact that persons with disabilities are more likely to live in poverty is often the result of ignorance and neglect that is reinforced in Government and development policies and programmes that ignore, exclude, are not accessible to or do not support the rights of persons with disabilities to be included in the socio-economic life of the country.

1. Disabled People In Malaysia
In Malaysia, those statistics translate to 2.7 million disabled people. This does not include the number of senior citizens who become disabled through old age and illness. A total of 197,519 disabled people have registered with the Department of Social Welfare Malaysia (DSW) by the end of 2006. This figure is not a true reflection of the number of disabled people as registration is voluntary.

Disabled people are deprived of many of fundamental rights such as freedom of movement, education, employment, enjoying social life and even voting. To a large extent, schools, business premises, work places, public transport and public facilities are out of reach to disabled people. These factors cause disabled people to be further marginalised apart from the perception by society that they are objects of charity and are unable to lead fulfilling and independent lives.

Disabled people want to enjoy life’s fundamental experiences like everyone else. They want to go to school, get a job, get married, start a family, have a house to call their own and participate in social, cultural, religious and political activities. These all are not possible at the moment because of environmental and attitudinal barriers that are rife in society.

2. What Is Disability?
The general perception is that disability includes physical, visual, auditory and learning impairments. However, those impairments are not the reason why people are disabled. The Social Model of Disability states that people are disabled by social prejudices and environmental barriers, either purposely or inadvertently. People become disabled when society fails to accommodate and include them in all processes of social and infrastructural development.

Disability does not solely affect the person with impairment. The nuclear family and extended family are affected as well. In many cases, one member from the nuclear family has to stop working to care for the disabled person. Productivity within the nuclear family is vastly reduced and may cause financial hardship for the entire family.

3. The Issue – Accessibility
The built environment in Malaysia is generally inaccessible to disabled people. By-law 34A of the Uniform Building By-laws that requires all buildings to be accessible to disabled people is not strictly enforced. Malaysian Standard MS 1183: Part 8: 1990: Specifications for Fire Precautions in the Design and Construction of Buildings Part 8: Code of Practice for Means of Escape for Disabled People (MS 1183) and Malaysian Standard MS 1184: 2002 Code of Practice on Access for Disabled Persons to Public Buildings (MS 1184) that are employed in the By-law provide specifications for the construction of accessible facilities are not adhered to most of the time. Furthermore, there is no existing law to provide for accessibility outside buildings for disabled persons as specified in Malaysian Standard 1331: Code of Practice for Access for Disabled People Outside Buildings.

The lack of accessible environment within and without buildings makes it difficult for disabled people to integrate into the communities that they live in. They are unable to go out as walkways usually are not built with ramps and are fraught with barriers such as street furniture and uncovered drains that not only obstructs the passage but is liable to cause injury or death. Walkways that have ramps are usually not usable and dangerous as they do not comply with MS 1331.

4. A Barrier-Free Environment Enables Disabled People
A barrier-free environment is vital for the mobility of disabled people. It allows them to move around conveniently. This includes access to schools, shops, offices, hospitals and other places for social and recreational activities. A barrier-free environment is also the vital link for disabled people to access public transport in way of bus stops and bus hubs that complements non-step buses from RapidKL.

Many disabled people live in conditions of poverty. They cannot afford to own private vehicles. As such, public transport is the only affordable means for them to travel. A barrier-free environment will allow them access to public transport. This will then be able to reduce to a certain extent the poverty rate among disabled people as it allows them to go to school to get an education and then be gainfully employed. It also enables disabled people to move freely in their communities. They can then be active participants and contributors in the activities and development of the communities that they live in.

5. What Is Good For Disabled People Is Good For Everyone
A building with steps is only accessible to people who can walk. A building with ramps is accessible to people who can walk and disabled people. Therefore, what is good for disabled people is good for everybody. Accessible facilities also benefit senior citizens, pregnant women, parents with prams, children and people with temporary impairments.

Given the opportunity, disabled people will be able to contribute meaningfully to the development of the society that they are part of. Making the state of Selangor Darul Ehsan barrier-free and accessible is the first step towards that objective. We have among us, experts in various fields related to disability such as accredited Access Auditors, Disability Equality Trainers, Rights-based Advocates and Independent Living Resource Persons who are ready to impart our expertise to achieve that.

6. Representation In The Government
At 10% of the population, disabled people form one of the largest minorities in the country and also the most disadvantaged. This can be attributed to the fact that they are under-represented in the government. Without a voice in the government, disability issues are given little attention and priority.

As such, we call upon the Government of Selangor Darul Ehsan to :-

1. Recognise that disabled people have the same rights as other citizens.

2. Respect disabled people’s right to freedom of movement and barrier-free environment.

3. Take immediate steps to incorporate the needs of disabled people in all planning and decision making of the physical, economic and social development in the state.

4. Consult and involve disabled people in all policies and projects including education, housing, employment, public transportation, built environment, services, social and cultural activities, etc.

5. Ensure that all services provided by the Government of Selangor Darul Ehsan and companies contracted under the state are accessible to disabled people

6. Ensure that By-law 34A of the Uniform Building By-laws and the related codes of practices are strictly enforced and introduce legislation for accessible street environment and public transportation.

7. Apply the same accessible standards and service provisions to all government buildings.

8. Set a time frame for Selangor Darul Ehsan to become the first barrier-free state in Malaysia.

9. Compel all public transport operators in Selangor Darul Ehsan to provide accessible public transport service.

10. Allocate an employment quota in the Government of Selangor Darul Ehsan to disabled people

11. Provide disability awareness and equality training for all public service providers and local authorities at the managerial, operations and technical level.

Conclusion
We earnestly appeal to the Government of Selangor Darul Ehsan to take note of the pertinent points covered in this memorandum. Problems faced by disabled people deserve equal attention. We sincerely hope the Government of Selangor Darul Ehsan will work towards the equalization of opportunities for disabled people.

This memorandum was prepared by Peter Tan and Naziaty Yaacob.

Jenice Lee with Tan Weng Aun, Wang Siew Ming and Peter Tan.
Photo by Wuan.

Right after the 12th General Election, I thought it would be a good idea to present a memorandum to the incoming state governments on issues of accessibility for disabled people. Although there is a law to compel developers to include such features in their projects, this is seldom enforced. The Uniform Building By-Law 34-A (UBBL 34A) under the Street Drainage and Building Act specifically states that:

(3) Buildings to which this by-law applies and which on .the date of commencement of this by-law have been erected, are being erected or have not been erected but plans have been submitted and approved shall be modified or altered to comply with this by-laws within 3 years from the date of commencement of this by-law.

Fifteen years later now, old buildings have not complied with this requirement while many new buildings do not meet the minimum standards of accessibility. The onus of enforcements falls squarely on the majlis perbandaran (municipal councils) and they have done nothing with regards to this matter.

While the UBBL 34A is a move in the right direction, it is made impotent by indifferent officers within the many majlis perbandaran who are either ignorant of the existence of the law or are not technically savvy enough to understand the accessibility standards. Whatever the reasons, disabled people are left high and dry.

Hence, I wrote the memorandum with the hope that it would move the state governments to compel all municipal councils to enforce the UBBL 34A. Naziaty Yaacob of Inclusive Design for Malaysia provided valuable feedback that completed the document. My friends in Penang submitted the same document with some amendments to reflect the situation there to Penang Chief Minister Lim Guan Eng a couple of weeks ago.

Here in the Klang Valley, I secured an appointment to meet with the ADUN of Teratai YB Jenice Lee last Saturday morning together with fellow accessibility advocate Wang Siew Ming and Tan Weng Aun. We presented Jenice with the memorandum to forward it to the Selangor Menteri Besar. We spent nearly two hours discussing about the accessibility issues faced by disabled people and the badly done ramps along the walkways at Pandan Perdana and went through the various points in the memorandum.

At the same time, Wang presented Jenice with the Malaysian Standard MS 1184: Code of Practice on Access for Disabled Persons to Public Buildings and the Malaysian Standard 1331: Code of Practice for Access for Disabled People Outside Buildings. He presented the same books to the previous ADUN before the construction of the ramps but not one of the ten ramps complied with the standards and are not safe to use.

The day before concrete was poured, we specifically guided the contractor on how it should be done. He was annoyed with us for fussing over it. We were very disappointed when we went to check on the ramps after it was completed. He did not follow any of the specifications. That rendered the ramp useless. It was truly a waste of public funds.

We truly hope Selangor will live up to its developed state status and take the lead to become the first state to be generally accessible to disabled people. We have gotten a raw deal for so long and we hope that all the new state governments will seriously look into the problems faced by disabled people and resolve it for once and for all. We would also like to thank Jenice for spending the morning listening to us, making an effort to understand what we are facing and for promising to look into it.

Related entry:
Memorandum to the Government Of Selangor Darul Ehsan on Facilities for Disabled People

Scott Rains alerted me to this disconcerting piece of news forwarded to him by Kavita Agrawal. When will airlines learn to respect disabled people as real people and not just another piece of cargo? They should realise that disabled travellers are becoming more aware of their rights and are not going to take such mistreatment lightly. I experienced the same problem a few years back while flying from my hometown in Penang to Kuala Lumpur. Read about that incident here and here.

Para Olympics champion alleges humiliation
3/19/2008 12:18:52 PM
Para Olympic champion Malvi Hola narrates her ordeal on Jet Airways to TIMES NOW, with her wheel chair (background) that was found broken in the aircraft’s cargo hold

A disabled athlete - no less than a para Olympics champion - has accused the crew of a leading airline of humiliation.

India’s para Olympic shotput champion Malti Hola has today (March 19) charged Jet Airways officials with humiliating her.

The incident occurred on February 20 on a flight to Delhi from Bangalore. Hola says after a two and a half hour flight, she was made to wait for another one and a half hours on the plane due to a delay in the arrival of the special chair which would take her out of the plane. The athlete did not receive any aid from the crew to visit the lavatory on the plane, resulting in an embarrassing situation for her.

But the problems did not end there. Malvi recalled her ordeal in an interview to TIMES NOW:

“The total journey was almost 2 and a half hours. They made me sit for one more hour and a half because of the ‘in chair’ (aisle chair) that had not arrived - there was a big communication gap between the cabin crew and the ground staff. The in chair is directly wheeled to the seat and the passenger transferred to her seat. By the time this arrived, I had developed internal problems since I had not been able to go to the toilet. My bladder was full so I started wetting my clothes.

“When I finaly came out, I had a big argument with the ground staff and the Jet Airways people. When my wheelchair came out of the cargo hold, it was totally broken, I was not able to use it at all. You know how essential the wheelchair is to people like us,” she said.

Hola added that the Jet airways officials “did not have the courtesy to even taken down the complaint. They were just going on apologising for the delay.”

With her wheelchair damaged and the camp for the Bejing Para Olympics fast approaching, Hola says she cannot think of training. She wonders at the fate of other disabled people who have to face such problems. “At least I can raise my voice and be heard because I am known through the field of sports - what if a normal disabled person goes through this?” she asks.

TIMES NOW has sought a reaction from Jet Airways but the airlines said they were questioning the cabin crew to get details of the incident and have refused to come on record.

Passengers with disabilities are required to fill some forms before the flight to state their medical condition to the airlines. It is not yet clear whether Hola had put her disability ‘on record’ in this manner before boarding the flight, an airline official stated.

Continued apathy

Incidentally, a similar ordeal was reportedly borne by another high-profile passenger on Jet Airways late last year when the airlines found wheelchair-ridden Jindal family scion, Sminu Jindal, so unfit to fly that it asked her to either sign an indemnity bond or deplane.

The incident — which again highlights airlines’ apathetic attitude towards physically-challenged passengers — happened on December 25 when 34-year-old Sminu Jindal, who heads Jindal Saw, was travelling from Delhi to Bangkok on Christmas with her husband Indresh Batra on Jet’s business class.

Moreover in the return sector flight on January 1 Jindal alleged the airline did not provide any aisle chair. “My husband had to drag me to the seat on the flight. The issue is not about me being treated like this, but how airlines still refuse to provide basic assistance and dignity to physically-challenged passengers,” she said.

On its part, Jet Airways had accepted its mistake and apologised to Jindal. Jet’s EVP (commercial) Sudheer Raghavan at the time even admitted “Jet Airways does not currently provide aisle chairs to special need passengers. We are examining the possibility of providing such services.”