Wednesday, 28 January 2009

Falling Short

Wednesday January 28, 2009

Falling short 

ONE VOICE By PANG HIN YUE


The Persons With Disabilities Act 2008 has been reduced to a mere administrative document. Who then can the disabled turn to for help?

UNLIKE previous seminars held at the Bar Council headquarters, there was a conspicuous absence of Special Branch officers at the recent talk on “Persons with Disabilities Act 2008: What Next?”

The Bar Council’s Human Rights Committee chairman, Edmund Bon, reckoned it was because the disabled community was perceived as “non-threatening”.

It may not have had the tension and drama that come with some of the more explosive issues that the Bar Council had attempted to address, but it was no less emotionally-charged. No less gut-wrenching, when participants shared how time and again they had been discriminated against by a system that was divided by the them-and-us polemics.

Among them was Christine Lee of Barrier-Free Environment and Accessible Transport (BEAT). Even though the Persons With Disabilities Act (PWDA) had come into force last July to accord equal rights to the disabled, Lee still found herself being discriminated against on account of her physical disability.

Just two days before the Bar Council meeting, she was invited to speak at a hotel. However, upon reaching the hotel, she discovered there was no parking space allocated for wheelchair users, forcing her to park her car at the VIP bay. The hotel staff warned that if she did, they would clamp her car. Sure enough, after her talk, she found her car clamped and was told to pay a fine.

“Why should I be made to pay for a service the hotel had failed to provide?” Lee asked. It was only after talking to the senior hotel management staff that they released her car without imposing a fine on her.

How ironic that Lee was penalised when the builders of the hotel had flouted the Uniform Building By-Laws by failing to provide facilities for the disabled. This incident underscores the fact that despite being touted as a rights-based law, the PWDA is silent on sanctions and penalties against parties that discriminate against the disabled.

As president of the Malaysian Bar Council Datuk Ambiga Sreenevasan noted: “There is no provision for any penalty for any party who does not live up to the obligations under the Act. In fact, (under Section 41 of the Act), the Federal Government is expressly excluded from any wrong-doing for any failure to address the needs of persons with disabilities.”

Access to public transportation remains a challenge for the physically disabled.

She added that although the Act states that persons with disabilities (PWD) have the right to enjoy the benefits of public transport, housing, education, employment and healthcare, it does not offer remedies if they face discrimination in these areas.

Bon admitted that many lawyers are unaware of issues confronting the disabled and urged the latter to bring their grievances to the law fraternity so that both parties could work together to push for equal rights for the disabled.

The participants testified that access to public transport, buildings and amenities remains the bane of the physically challenged. Even though it is compulsory for developers to incorporate features such as ramps and disabled-friendly toilets and car parks under the Uniform Building By-Laws, enforcement is sorely lacking.
Securing insurance is another mission impossible. For the learning disabled community that includes persons with Down syndrome, autism and attention deficit hyperactivity disorder, access to services to enhance cognition and to overcome sensorial problems, remains elusive.

The Special Education regulations under the Education Act, for instance, has a discriminatory clause that states only those who are “educable” are admitted to school.

Is it then possible to use the PWDA to compel the Education Ministry to amend the regulations?
Lawyer Helen Chin, an advocate for the learning disabled, pointed out that Section 28 of the PWDA states that persons with disabilities shall not be excluded from the general education system on the basis of their disability. “For the purpose of streamlining current legislation relating to special education, the term ‘educable’ should be deleted to avoid inconsistency and ambiguity,” Chin asserted.

Given the multi-faceted issues affecting the physically and mentally disabled, how is it that the PWDA seems to fall short of expectations? Perhaps the history of how it came about could shed some light.
In 2002, when representatives from various organisations were roped in to form a committee to draft the Bill, they rejoiced. They laboured over it for the next five years, raising salient points to be included in the Bill.

Among them was Bathmavathi Krishnan, secretary of the Malaysian Confederation of the Disabled.
But to their dismay, when the Bill was tabled and passed in Parliament late 2007, they realised it had deviated from the original draft. “It was a very much watered down version of the original,” said Bathmavathi.
Thus the PWDA had been reduced to what she called, “an administrative document which merely imposes obligatory responsibilities on the various ministries to undertake certain actions to improve the lives of PWDs. Without any sanctions for non-compliance, it renders the Act almost ineffective.”

Lawyer Mah Hassan Omar who is president of the Malaysian Confederation of the Blind and who presided over the committee said: “The final version (of the Act) was far different from the original draft and people with disabilities were not fully consulted for the final document.”

Under the Act, the Minister of Women, Family and Community Development is vested with power to appoint a maximum of 10 persons whom she deems as having appropriate experience, knowledge and expertise to be in the National Council for Persons with Disabilities. The council also has members representing nine ministries, including the the secretary-generals of finance, transport, health, human resources and education.

The secretary-general of the Housing and Local Government Ministry, strangely, is not in the council.
The council is expected to meet three times a year to review, recommend, implement and advise on various measures affecting the disabled. Towards this end, the Department for the Development of Persons with Disabilities will be created to assist the council in the areas of registration, protection, rehabilitation, development and well-being of PWDs.

While the Act is silent on protecting the rights of the disabled by way of imposing sanctions and penalties, it is explicit in shielding the council in that no party is allowed to take legal action against it.

Despite the hiccups, it is hoped that through other sections of the Act, there is room for the disabled to seek redress. Under Section 43 of the Act, the minister is given power to introduce regulations. It is hoped that through this provision, Datuk Dr Ng Yen Yen who took over the portfolio after the March 2008 election, will bring about the necessary reforms to make the Act air-tight.

Further, Section 13 states that the Council can recommend changes to existing laws or propose new ones to improve the lives of the disabled. “This area should be fully exploited,” stressed Bathmavathi.

She proposed that Article 8(2) of the Federal Constitution be amended to outlaw discrimination against the disabled. She urged the Minister in her capacity as the Council’s chairman, to institute Section 46 to amend the PWDA to include sanctions and penalties for non-compliance. And to ensure the Council acts without fear or favour, Bon proposes that a Shadow Council be established as well.

Although Dr Ng is barely one year into her new job, the burden is on her, being the key person vested with power under the PWDA, to do what is right for the 2.7 million PWDs in Malaysia.
  • One Voice is a monthly column which serves as a platform for professionals, parents and careproviders of children with learning difficulties. Feedback on the column can be sent to onevoice4ld@gmail.com.

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Thursday, 15 January 2009

Kids just as sweet
15 May 2008

ONE VOICE By YONG YEK MING

Parents of children with autism have to grapple with the many misconceptions surrounding the condition.

YONG: "Good Morning! This is Yong. How can I help you?" Amy: "Is this Autism Support Centre?"
Yong: "This is Parents' Resource for Autism or PR4A. Who am I speaking to?"
Amy: "My name is Amy. I want to ask about autism."
Yong: "How can I help? Are you a parent?"
Amy: "Yes, I am a parent. I want to know why autistic kids like to beat people."
Yong: "Amy, how old is your son?"
Amy: "Not my son, I have a daughter and she is in Year One now."
Yong: "How is she doing in school?"
Amy: "She was beaten on the back by this autistic boy recently. The autistic boy disturbs the class and because of that, she cannot concentrate in class. I want to know if autistic people can hurt people, why they are still allowed in a normal class?"

At that particular moment I was about to give her a piece of my mind and tell her off, but after taking a deep breath and keeping my emotions in check, I started to chat with her for about 90 minutes. I am very happy to say that I have made a new friend of Amy and now she will be another spokesperson on behalf of my two sons who have autism.

Had I told her off, I would have made another enemy and she would not have a nice word for someone who has autism. As parents of children with autism, we have been in situations where we were asked or told the following: "Is autism contagious?" "Are they psychotic?" "Will he hurt people?" and "If he cannot be quiet, please stay at home. You should discipline your kid."

Apparently the boy in Amy's daughter's class has autism and has been teased by his classmates. Kids will be kids. They love to play around without any bad intention. According to Amy, the boy tends to be quiet and usually cannot stand loud noise, so he uses his hand to cover up his ears. Apparently the kids in the class like to tease him because he is different. It comes to a point where he cannot take it anymore and acts to defend himself. Sadly, we only notice his act of self-defence but are blind to what he is going through.

Autistic children want to be happy and accepted by society.

I told Amy that kids with autism are usually victims of verbal and physical abuse. Amy admitted that her daughter likes to tease the boy too. I told Amy that from our experience, they are the sweetest boys and girls in the world. They don't feel resentment, they don't feel hatred and they are usually very happy to be within their own space.

Life is stressful for parents of children with autism due to the lack of awareness and public stigma. In fact, it drains the financial resources, and taxes the health and relationships of parents and siblings involved.
Some of my kind friends tried to comfort me saying, "They are going to recover", "God has a bigger plan for you". We, the parents, know the future of our children is not going to be so bright.

What we really want is for them to be independent in a society that can accept them for who they are. They may have some disabilities but inside them, they want to be happy and accepted by society.

The not-so-kind ones used to say, "You must have done something wrong in your past life and this is karma". That really hurts a lot. If I have done anything wrong in my past life or even current life, I should be punished instead. The kids are innocent and should not be paying for my sin. This line of argument comes from friends who do not have much exposure to medical information and awareness about autism.

Hence, anything that is not explainable, they attribute to repercussion. I usually try my best to explain to them about the whole autism issue and hopefully they will have the awareness to help someone in future.

When someone from the medical profession like Dr Amar Singh sparked off a debate on "classical autism" versus "new autism" following an article he wrote in a local newspaper, it naturally upset parents who are trying their best to cope with the situation.

Dr Amar Singh implied that "new autism" is caused by, among other things, lack of family interaction and lack of play. He also pointed out that Chinese children predominate among the cases of "new autism" and that the parents are predominantly from the upper middle-income group that is represented by the affluent, high-flying professionals.

Let me share my side of the story.

When my wife was pregnant with our eldest son, about four weeks into the pregnancy I went to a bookstore and bought a storybook titled 365 Bedtime Stories. For each day of the year, I read the story of the day to my unborn child. On top of that, I also sang nursery rhymes almost every night to my child in his mummy's womb.

When he was born, I was the one who bathed him every day even though my wife was a stay-at-home mother. His developmental milestones were perfect, and he even won a Baby of the Year contest in 2001.
My house is full of toys, so much so it is like a toyshop. We enrolled him for playgroup every weekend at a play centre. We brought him to the beach and played with mud and sand. Despite all the nurturing, eldest son has autism. My second son is also not spared.

From my experience, I gather that autism does not discriminate. It affects all races, rich and poor alike.

One Voice is a monthly column which serves as a platform for professionals, parents and care providers of children with learning difficulties. Feedback on the column can be sent to
dignity@tm.net.my. For enquiries of services and support groups, please call Malaysian Care (03 90582102) or Dignity & Services ( 03-7725-5569).

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